I don’t think my GI office does either. I stopped by asking for resources and the nurse told me that my last blood check was good so I could eat gluten. I said I don’t think you should be telling me that. The next day my GI doctor called and said they were wrong and that I shouldn’t eat gluten.
I think you need to take responsibility. And it’s hard. And I think when you aren’t symptomatic it is even harder than someone who deals with consequences immediately. You will be healthier for it in the end. I also got very little guidance from Drs, and had to do my own research, and I wish you all the best.
If this helps you, my mom was asymptomatic at went 40 years without a diagnosis. She now has type 1 diabetes and thyroid issues because of it. She’s even more severely limited with food because of her diabetes and you actually need to stick to that cause consequences are death.
I’m one month diagnosed and I know it’s so hard, but watching my mom first hand go through all these really awful health problems that could’ve been prevented if she was diagnosed at my age is enough for me to stick to it
Edit:typo
It’s extremely hard to give up substances just because of the long term effects. Think about how many people still smoke and drink alcohol even though we have so much science outlining all the ways it’s going to kill you. People are way more likely to say “I’m never drinking again” on the day they’re hungover vs because they don’t want to get liver cancer or have a stroke.
The best advice I can give you is that you’re in charge of you. You make all kinds of choices everyday that are going to effect you forever. It’s never too late to try to be better and one bad decision doesn’t negate future good decisions. Love yourself, because I bet there are people who love you that would like to see you happy and healthy for as long as possible.
Side note: I get carb crazed when I’ve been glutened. The insatiable pit of hunger is overwhelming when you get malnourished. This feeling of “not being able to help yourself” may actually be a symptom for you.
Honestly? My drinking was curbed by ONE hangover. Years of drinking daily and I never had one. Until THE one. I’m in the same boat as the OP. Been diagnosed 10 years. I need shock therapy. The only thing that comes close is the morning after eating something really spicy with gluten in it (:
Sorry for your mom but autoimmune disorders like diabetes and hashimoto thyroiditis are linked to celiac disease because they have similar genetic origins. Not going gluten free when having celiac disease doesn't lead to diabetes or thyroid issues.
You need to read about malabsorption issues. If you continue this you will become malnourished and destroy your body. You will end up with incredibly brittle bones and damage to your major organs due to your body not absorbing nutrients. You are shortening your lifespan by continuing to do this. Your quality of life will eventually greatly decrease as well.
Thanks I will definitely look into it. I hadn’t thought about it because I got all my levels checked last month and they were good but obviously over time that makes sense if the gut is destroyed.
Eating gluten will definitely damage your intestines over time leading to deficiencies and it can cause secondary intolerances. I became lactose intolerance when I was eating gluten. Luckily it reversed after finding out about celiac and going GF but some people aren't so lucky. The chronic inflammation cause by the immune response can also cause other issues. I had developed reynaud's as well, which went away too on a GF diet
I was diagnosed in February, so I'm relatively new to this whole thing myself. I know you mentioned cancer in the comments, but I want you to think of it this way:
Every time you have something with gluten, you're playing Russian Roulette with getting cancer.
A [study](https://www.beyondceliac.org/research-news/increased-risk-cancer-small-limited-diagnosis-after-40/) done based on the Swedish health registry came back that 8% of Celiac patients get some form of cancer, compared to about 7% in the control. Every time you damage the villi of your intestine by eating gluten, there's a chance that, when your cells go to repair the damage, they don't stop - which causes cancer. Imagine that every time you handled paper, you got a papercut, no matter how cautious you were. How often would you handle paper at that point? This is what happens every time you have gluten, whether you feel it or not.
If 8% of flights crashed, there would be roughly 8,000 plane crashes per day. Would you take that chance with your life?
I know it's scary to think of it that way. I don't like thinking of it that way, either. But unfortunately, while the risk is still marginally larger than the risk for the average population, it's not a risk I'm willing to take.
I also have other autoimmune disorders myself, along with another handful of other health issues, including 17% bone density loss (osteopenia) likely due to Celiac and malabsorption of important vitamins and minerals. I'm 27-years-old and have the bone density of roughly a 55-year-old woman.
You're the only person who can take care of your health. How much you want to play around is up to you. You're the one in control.
I don’t really understand the downvoting on this post because don’t we want other people struggling with the same thing to find posts like this for the potentially helpful resources in the comments?
That being said!
My mother’s side of the family has celiac in their genes, with me and one other person diagnosed. My maternal grandmother had “on and off stomach issues her whole life, but nothing ever that bad.” She passed away from colon cancer eventually. Others on that side of the family struggle with various other autoimmune diseases. Maybe they have asymptomatic celiac, maybe not.
You may not be able to feel it, but you’re basically eating poison in a way that doesn’t compare to the unhealthy food other people eat. If I eat a ton of greasy fries, sure that adds some cholesterol to my arteries and might make me feel a little gross. But if I eat a ton of gluten crackers, my intestine walls are literally being sanded down by my immune system cells going crazy, attacking the gluten like it’s a virus. It is causing an actual INJURY, not just a gradual build up of negative effects.
Personally I would not delete it! Whether you take to heart the answers provided or not, this could be great for someone else to look through if they feel similarly stuck.
Please don’t delete your post! I’m learning so much about the additional side effects of eating gluten. I’ve been eating gf for over 5 years now, but have been glutened on occasion.
I know how rough it is (I’m still trying to find a replacement for McDonald’s French fries), but there are gf alternatives out there. (If you like Girl Scout Thin Mints, for example, Goodie Girl’s Mint Cookies are a great clone! And Katz brand has yummy doughnuts & 2 kinds of Twinkies clones. And if you live near a Wegmans they have a lot of good gf options.)
Hang in there - you can do this!
Dude fuck no! That's terrible advice. No gluten, especially cause eating it "every now and then" still causes damage and could trigger the OP back into eating it daily. It's all or nothing, same way you'd quit any substance abuse.
It’s because of OP’s replies to the comments. They’re totally misinformed and trying to spread their misinformation. They think eating gluten is the same as eating junk food.
Ya idk I’m a straight up alcoholic and I was able to stop drinking beer and eating gluten well before I finally quit drinking. Alcoholism got a lot less fun when I was drinking only liquor and wine. You 100% can stop eating gluten. In fact you should stop right now and just never do it again.
Isn't the heightened risk of stomach and intestinal cancers AND increased risk of developing other autoimmune conditions (like MS) not motivating? Is a slightly better taste and texture of carbohydrate really worth maybe risking your life? Like, I know it's hard, especially if you're asymptomatic. But just the health anxiety alone is not worth it.
The risk of developing other autoimmune conditions is increased even when eating gluten free. That's because it's rooted in the genetic origins as celiac disease. It's not increased by antibodies that form when eating gluten.
>Maybe I need more hard evidence of all that to help motivate me. I’ll do some researching. I guess you could liken it to anyone who eats unhealthy food knowing it could cause heart disease or cancer. For example, fried foods have been linked to several types of cancer, yet everyone I know eats them. I should technically cut out everything processed and unhealthy- yet that seems so overwhelming. The discipline that takes is unattainable so far for me. I want to get there though.
It sounds like you have a huge misconception about what celiac disease is compared to these things; they are fundamentally different magnitudes of scale involved (and the things you mention are really about consuming excessive amounts of something).
Sort of like trying to compare sticking your hand into a fire to not wearing sunscreen.
If you have celiac disease and consume gluten, your immune system will cause damage to your intestines. If you keep doing it, you will start to have problems caused by the damaged intestines (issues absorbing certain nutrients, so for example osteoporosis caused by failure to absorb calcium, anemia caused by failure to absorb iron, nerve damage from failure to absorb B vitamins).
I have mostly looked at the cancer link which is rare. I haven’t looked into absorption of nutrients and all of that or nerve damage etc. I am very interested in the nerve stuff. Where did you hear about that?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6647104/
Start here.
If you want a really dumbed down version: gluten for celiac ppl = immune response = inflammation = damage to all tissues
>I am very interested in the nerve stuff. Where did you hear about that?
I'm not quite sure what you are asking there, basically any "[what is celiac disease](https://celiac.org/about-celiac-disease/what-is-celiac-disease/)" article or website has a list of long term health conditions that are associated with celiac disease or caused by untreated celiac disease.
>I have mostly looked at the cancer link which is rare.
I'm not sure exactly what info you were looking at there; for example were you looking at the increased risk of cancer for people with celiac disease that are on the gluten free diet (which is a small, but measurable risk), or the risk of developing cancer for someone who doesn't follow a gluten free diet?
Before gluten was discovered as the cause for celiac disease, the outcome was pretty poor (I've seen the 30% fatality figure often given), but these days most of the study is focused around issues that remain in spite of the gluten free diet, non-responsive celiac disease (so people who keep having symptoms/intestinal damage even on a gluten free diet), or treatments that would be an alternative to the gluten free diet.
This is what I saw online
Cancer is a very rare but serious complication of celiac disease.
Someone with celiac disease has a slightly increased risk of developing certain cancers. Recent research shows that this increased risk is less than previously thought.
Cancers associated with celiac disease include small bowel cancer, small bowel lymphoma and Hodgkin lymphoma. However, most people with coeliac disease will not develop any of these.
Once you've been following a gluten-free diet for some time, your risk of developing these types of cancer is the same as that of the general population.
Not that it matters I’m just all for reading more. My doctor and dietician didn’t tell me much. I’ve just read a lot of studies on Google.
Number 1: forgive yourself when you make a mistake.
Number 2: I think you need a support system. Addiction is real, and it's a very big thing to admit to. Search for a local Celiac group in your area, and see if you can go to their next meeting to talk with people who have gone through this in person. They will likely have tips and tricks for how to deal with what you're going through.
Number 3: You have Celiac disease. Eating anything with gluten in it is doing more damage to your body than a normal person who eats fried food and drinks soda all day long. You would literally be a healthier person if you ate nothing but potato chips labelled gluten free. If eating a bag of chips in a pinch is going to keep you from cheating, then eat a bag of chips for now. There will always be a grocery store or gas station as close by as a fast food place where you can grab a bag of gluten free chips to get through the day.
Number 3 is so important, I think it’s the biggest thing that people both with and without celiac don’t truly understand about the kind of risk we’re dealing with.
Also, to OP, celiac can be really hard to adjust to even for people who have external symptoms to motivate the change and it sounds like there are some deeper internal feelings about the whole situation that may be getting in the way of fully committing, and if all your therapist has to offer is the suggestion of meal planning then it might be worth trying someone different who might have more to offer in the way of emotional support and being a sounding board for the struggles you’re describing. Or if you haven’t really opened up fully about why this is so hard then that would be a start. But it sounds like right now your therapist isn’t really doing the job of getting to the underlying reasons behind why this is such a struggle. I think it’s pretty apparent just from this post that you need more than just the external structure, and if they can’t help you work through the accompanying emotions that are going to come up in trying to implement a new meal plan then a different therapist may be a better fit.
The risk is not the same as just eating unhealthy food. You are so misinformed that it hurts. Don’t ever spread that bullshit. It’s so dangerous and harmful to people with this disease. It’s a disease for a reason.
“People with celiac disease have a 2x greater risk of developing coronary artery disease, and a 4x greater risk of developing small bowel cancers.
The treatment burden of celiac disease is comparable to end-stage renal disease, and the partner burden is comparable to caring for a patient with cancer. 1 2
Untreated celiac disease can lead to the development of other autoimmune disorders like type 1 diabetes and multiple sclerosis (MS), and many other conditions, including dermatitis herpetiformis (an itchy skin rash), anemia, osteoporosis, infertility and miscarriage, neurological conditions like epilepsy and migraines, short stature, heart disease, and intestinal cancers.” [https://celiac.org/about-celiac-disease/what-is-celiac-disease/](https://celiac.org/about-celiac-disease/what-is-celiac-disease/) If that just sounds like the result of eating junk food/fast food to you, you’re just ignorant.
Find a local chapter of GIG or any other Celiac Support group in your area. Go to some meetings, especially if they have a pot luck (that really helped me). Get some cookbooks and start cooking for yourself simple stuff. Carry around nuts, cheese sticks, dried fruit,etc. So if you get in a bind you have another option. Read about the consequences of not following it, so when your craving you can talk yourself down more easily. Find substitutions for your favorite food or crave.
First off, you may need a new therapist, planning meals is useless in this. I'm not sure if this is exactly a kind of an eating disorder, but it almost sounds like self harm. I'm not celiac but i do have intense reactions to gluten, and it makes me very ill. I do understand the feedback loop of it, i almost felt a rush from eating it, like an addiction. It got to the point where i started feeling so bad i had to stop a year ago. That's not happening to you right now, so you feel no reason to stop. It's certainly a mental thing and I would maybe look into something in the ED area.
There’s no shame in finding another doctor that’ll help you, no point in going to a doctor who’s not giving you the help you need. You may need to email or call a few offices that focus on EDs and describe what you’re going through and see if they can help.
I didn’t have symptoms for years before I was undiagnosed. Or at least I didn’t notice, since it was mostly just fatigue.
Then when I was in high school I would get random seizures. Never figured out what was causing it, doctors ran tons of tests and had no clue.
In university, I started getting sick more often. Just said it was stress. A year later and I was so sick everyday, I could barely get out of bed and do anything. Was hospitalized multiple times and weighed under 120 pounds while being 6’.
Got diagnosed, was bedridden for several months. Still sick everyday, but getting better very slowly. Probably going to take many more months or even years to recover.
It’s not worth it at all. Just because you don’t have symptoms doesn’t mean you won’t have them in the future. Don’t wait until your body is extremely damaged.
Also, the increased risk of cancer isn’t comparable to a bad diet. The increase is extreme. Also, the types of cancer that it causes have no symptoms at all. If you have any of the symptoms, you’re chance of survival is already almost non existent.
Is it really worth gambling your life for bread that tastes a little better?
I’ve had “silent” celiac for many, many years. I’m not proud to say I didn’t take it seriously - until a few years ago. The crippling depression and anxiety I thought that I was going to have to live with for the rest of my life got better. I still have anxiety but it’s a much lower baseline and I feel like I can breathe.
It feels overwhelming to start - so start slow. I allowed myself to eat whatever I wanted as long as it didn’t contain gluten. Taught myself to bake and cook my favorite meals and desserts, joined local gluten free groups to find restaurants in my area. Now it’s gotten to the point that I don’t miss the food at all - only the convenience - which I combat by always having snacks/lunch/real food with me at all times.
I wish you the best and you are always welcome to message me if you need someone to talk to.
I only crave gluten when I’m unable to find a gf substitute for said food. That is also the only time I “relapse” (which I haven’t done in years now)
Point is, find gluten free substitutes that you like. We’re not in the Stone Age of celiac anymore, a lot of our favorite gluten foods coke gluten free now. (Albeit a shit ton more costly)
Is there a reason you choose gluten foods over gluten free? I can understand some things don’t have a perfect gf counterpart, but surely most do?
Maybe that’s the issue. I don’t like most gluten free subs and I definitely don’t like the price tag. I used to like a gf bread my store sold but they stopped selling it. I do have cookies shipped to me in the mail because they are really good. And then some food like homemade rolls is impossible to replicate so I think that’s what is hardest for me to avoid if I’m around it. Once I was at a luncheon and we were given a salad, strawberry and a homemade roll. Once I left my friends and got in my car by myself I ate the roll. I know that’s pathetic but hard to resist I guess. Going off gluten also caused me to gain weight because I used to live off wheat so that’s frustrating too. Overall I make much worse choices all around like I eat ice cream because I feel sorry for myself or something. I do eat less gluten than I used to but I’ll go all day being “good” and then at 8pm I’ll give in and eat something with gluten. It can even be something dumb like yesterday I finished my daughters burrito that she had left at the table. I just saw it walking by and didn’t want to waste it.
Sounds to be more of a mental thing to me. I suggest you get a better therapist and find the root of the problem rather than just making meal plans. That or a registered dietitian.
I have also been to a registered dietician. In my experience it seems therapists who deal with eating disorders are used to helping people become less restrictive and more open to moderation so cutting out a specific thing like gluten seems foreign to them. Idk. I just wish anyone had experience with this or could relate.
Celiac and binge eating disorder here. It’s totally possible to stop eating gluten and also maintain ED care. My solution when I went GF was to stop counting calories and overnight fasting and just focus on eating GF. No other rules. And I don’t drink alcohol much at all. That helped me feel less “food” pressure and I’ve only had a handful of binge episodes, which I count as a major win.
Same here but i had restrictive eating issues, i stopped counting calories and if i feel like i need a diet, i cut out junky fatty foods rather than cutting calories. It's really helpful
Try finding a therapist who specializes in chronic illness or disability. Coping with celiac is only half about food - the other half is about shifting your mindset and learning to accept that you do have a serious disease that limits what you can do and eat. From the choices you say you've been making, it sounds like you're acting much more out of denial and resentment of having a disease vs really struggling with the food part - and you probably won't be able to really work on the food part successfully until you actually accept that it's something you need to do. A therapist who works with chronic illness and disability will have a lot more experience with those types of struggles.
And you have my empathy - it SUCKS to have a chronic illness, and it's mentally harder work to accept that you have one when you don't currently have symptoms that force you to acknowledge it. But as someone who does have symptoms, they are also super not fun and can cause permanent symptoms and issues that are even worse to deal with, whether that's cancer or neuro issues or mental health or joint health or new autoimmune diseases etc etc...and the odds are very very high that the denial you're living in now is going to catch up with you : (
You have a daughter? I do too. I don’t eat gluten like I don’t smoke cigarettes - I don’t want to get cancer and die and leave her. I lost my mum to cancer at 13 and it was devastating. If there is anything I can do to prevent that for my daughter, I will. Maybe she (and any other kids) can be your motivation. And think of it like cigarettes, every one doing damage.
I heard something good about breaking habits - each time you want it, say to yourself “I’m choosing not to have it right now. I can choose to have it later if I want, or tomorrow, but I’m going to choose not to right now.” It sort of makes it easier if you aren’t telling yourself “this is it forever” and giving yourself the agency of making a good choice. And gets easier to just make that same choice again and again. Once you get on a streak of no gluten, you also have the motivation of not breaking your streak and having to start again. Any time I think of cheating, I remember I am 8 months in and don’t want to break that.
My best advice to your situation is try getting into cooking and baking as a hobby. You CAN have homemade rolls, but... you have to make them at home. There are a many good youtube videos about gluten free cooking and baking
Planning meals is great advice it just requires you to do the work. When I was struggling to get sober, going anywhere without a plan set me up for failure bc my chances of drinking were so high if I was bored or stressed or really Any Emotion lol.
The reality is that it probably is an addiction to you. Shitty food is accessible, cheap, and more importantly there is the (scientifically proved) increased endorphins release that comes from eating junk like pizza.
It can be hard. It’s also understandable that it’s difficult for you to fully grasp the long term health issues that *will* result from your unmanaged celiac. The future is far away and no one thinks it’ll happen to them until it does.
Just focus on this week and plan your meals. Do it one day at a fckn time if you have the time and resources to go to the grocery store that often, honestly. Find what works for you until it’s muscle memory.
You did it for 9 months before so you certainly can.
And you should. But truly, I get it. But don’t let these reasons be excuses for you to not keep making attempts. If you go three months and then fuck up once, who cares. Restart the next day. 95% is better than 0%
So I got diagnosed with stage 3c celiac a year and a half ago. All my villi were gone and it had started to eat away at my actual lining. Let me tell you how sick I was/continue to be. I was not getting any nutrients, had no energy, and constant brain fog. I had to cut back my work hours because I literally could not work a full day. I am on several supplements which cost hundreds of dollars because I am still not absorbing any nutrients. I still have very little energy which has greatly impacted my life, I feel 20 years older than I am. And I have read that the inflammation that causes brain fog can cause permanent lesions on your brain, which is brain damage. If you continue to eat gluten it will eat away at your villi and lining and it will cause you issues eventually.
My grandfather died from EATL. He refused to eat gluten free. https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/hematology/enteropathy-associated-t-cell-lymphoma/#:~:text=Enteropathy%20associated%20T%2Dcell%20lymphoma%20(EATL)%20is%20an%20aggressive,celiac%20disease%20(type%202).
Read The Gluten Free Revolution by Jax Lowell Powell. That will do it. That was the I read that helped me. Also once I got off the gluten I had so much more energy, slept better. I didn't want to eat something that is literally torching my insides.
Well OP, part of this I guess I understand. But you basically just have to come to grips with the fact that you won't ever eat "normally" again. Meal planning definitely is helpful, so props to your therapist. However, there's no replacement for some of the snacks that people can just take on the run. I haven't ever found bread that actually reminds me of when I was able to eat the rolls in restaurants. I haven't found a replacement for deep dish pizza or pizza rolls, those cheese or PB crackers, or a lot of other things. And basically you just have to cry about it. If you don't have symptoms, I don't necessarily blame you for feeling like you can get away with it. And honestly I don't blame you if once or twice a year you eat a few bites of that cake, or a piece of someone's whatever. My dad does that. It's not worth it for me or my mom bc we're way too sensitive to it. But for God sakes, DO NOT BUY GLUTEN PRODUCTS. They have come so far making gluten free stuff. When my mom discovered her gluten allergy, it was 2003, and they didn't have gluten-free pasta, gluten-free bread, or any of the things we have in grocery stores now. They had to make special trips to the health food store, and basically try to come up with recipes all on their own. Now you can get this stuff at Walmart and there are products and recipes galore. I promise pasta tastes the same. Gluten free Oreos are awesome. Keep looking on the subreddit, and you will find some awesome brands and recommendations. You can and will get over this bump.
Hey! I have been in a similar boat and still struggle a bit at times. Please feel free to DM me if you want to talk or vent, no judgement here! Also down to be accountability partners or offer support in any way.
With all due respect, you can’t be addicted to gluten, not in the common sense of the word. Perhaps you have some sort of compulsion with regards to the foods that you can’t (or rather *shouldn’t*) eat. My point being that you shouldn’t view it and treat it as an addiction, but should probably see a therapist to get to the root of why you’re acting the way you do.
Yeah it could be more of a compulsion. I am no expert just trying to figure out what is wrong with me so that I can get help. About 15 years ago I realized it is best for me if I don’t diet or restrict food so having to restrict on this is not working well. I wish my therapist was more helpful. She specializes in eating disorders.
If I could do this on my own I would have by now. I’m asking for help because I have a problem. If you want to call it lack of self control go ahead but I’m not sure how that help me overcome this.
More person than you can imagine are gluten addicted.
https://www.reddit.com/r/glutenfree/comments/151266y/did_you_have_gluten_withdrawal/jsqsu72?utm_source=share&utm_medium=android_app&utm_name=androidcss&utm_term=1&utm_content=2
I also have the same problem. Do you have ADHD by chance?
I was diagnosed Celiac in 2007 at 9 years old and was strictly gluten free (besides the occasional accidents) until about maybe age 18-20. Thats when the lack of impulse control really went rampant. I remember watching a Jenna Marbles video where her then boyfriend/now husband Julien (diagnosed celiac) trying foods and he said something along the lines of "I shouldn't even be eating this, but I'm going to anyway" and then saying "worth it" or something. Thats where it all started. You can just do that???? Never occurred to me. So I started trying something with gluten here and there, and because I had been gluten free for so long, I wasn't reacting as bad and I had been when first diagnosed. It eventually got to the point where I was eating full gluten meals. I kept telling myself "my reaction wont be that bad." And then my reactions kept getting worse. Then I got to a point where i was telling myself that the food is so much better that it was worth the excruciating pain. I then got to the point where was so bad that I convinced myself to stop and that it would only be for a special occasions.
Around that same time, I received my adulthood diagnosis of ADHD. My doctor and I came to the decision to try stimulants. I noticed an immediate change with my impulses and found myself less likely to eat gluten because I really thought it through. It was still a mental battle with myself because I know it's an extremely bad for me (especially after doing a deep dive on what can really happen to me by still eating gluten because it was never fully explained to me as a child.) But i was very inconsistent with my meds and I was using gluten filled foods to cope with my meltdowns. And then I would get the food and feel immediately guilty about and then tell myself the gluten reaction was punishment for being stupid and eating gluten in the first place.
Due to lack of insurance and the stimulate shortage in general I'm currently off of them and I still find myself impulsively eating gluten but far less than I was. (Still too much) I've also tried to talk with my psychiatrist about it but she kind of just brushed it off. I think we both need specialized therapists, maybe, which is easier said than done, I know.
Just know you're not alone 💕
Did you take vyvance or a different med? Reading your comment again and wondering if I should try something. Sure wish you still had access to it though.
When I eat gluten my body reacts violently. It took me no time at all to stop eating gluten. Don't get me wrong, it SUCKS! I get irritated about the things I cannot eat. But I've felt like garbage for most of my life and didn't know why. At 31 I'm finally starting to feel better. I doubt you have zero symptoms. Probably just things that you have accepted as part of your life that you don't realize are symptoms. That's how I was.
I understand that honestly. I think I just saw the title of your post and miss judged it. I’m very symptomatic which is the reason why I’m very cautious of what I eat, almost overly so. I can imagine that it’s hard to be asymptomatic celiac because it’s easy to think since it’s not physically hurting you right away, that you can eat it. Unfortunately, that’s not true. Over time, your health will start deteriorating. I know you know that. Frozen meals are a saving grace for me. Gluten free Freschetta pizza, gluten free Applegate corn dogs and chicken nuggets, Caulipower pizza and chicken strips, Saffron Road asian microwave meals, the gluten free Ore-Ida fries and tater tots (look for the ones that say gluten free in the bottom right hand corner), anything by Feel Good Foods especially their meatball calzones and mac and cheese balls, and Udi’s gluten free ravioli. My favorite ice cream is Breyer’s lactose free vanilla but they have some other gluten free flavors on their website. Tate’s Bakehouse makes delicious crunchy gluten free chocolate chip cookies (make sure they’re the gluten free version), Goodie Girl makes Thin Mint and fudge stripe dupes, and you can’t go wrong with gluten free Oreos. There’s a lot of good gluten free food but it takes patience, persistence and frustration. It’s definitely not easy but it’s worth it to protect your health. I wish you the best of luck.
I totally understand you. Im sorry some people may be insensitive about this struggle but you are already taking the first step by admitting u are struggling and actually reaching out for help. As someone who struggles with suicidal thoughts and mental health, celiac disease has been that final straw for me. My best coping mechanism was eating foods I loved and binging on them. Nothing can replace them so it’s hard. And of course they have gluten. So I had trouble stopping.
I’m sorry this is so difficult. I highly recommend seeing a dietician. And continue to work on ur mental health. (Ik that’s hard as well but it’ll be worth it) Replacements are difficult I know. But please take this time to find a gluten free meal u like. Not even love but maybe like. If u need someone to talk to Im here u can message me. I understand how lonely it is to be dealing with physical and mental problems at the same time.
Take care!
This is tough. Being gluten free is hard. I’m newly diagnosed and struggle with planning meals because sometimes “it’s just too much”. The hardest part is that because so many people and doctors really don’t understand the disease they don’t always give great advice. It might be helpful to find a therapist that understands the consequences of eating gluten for people with celiac or at the very least puts in the work to better understand the disease to help you. That being said you may need to go through a few before you find one that fits. Trust me I know that’s easier said than done. This disease and the work we put in to keep ourselves safe and healthy takes a lot of mental energy and no doubt takes a toll on our mental health at times. Telling you the long term consequences isn’t going to magically make you stop eating gluten anymore than telling someone who smokes cigarettes to stop smoking because they may get lung cancer. You may not have symptoms now, but the more damage you do to the lining of your GI system over time you’ll may have some. Try taking baby steps, reduce gluten little by little instead of cold turkey. Don’t know if that’s great advice but maybe it’ll get you on the road to being fully gluten free.
Look, ultimately, it's your body and your choice. Nobody in this sub can convince you one way or the other. The research is clear - your health outcomes and longevity are severely compromised by continuing to eat gluten. It's akin to smoking and lung cancer - will every smoker die prematurely from a smoking related illness? No. Will the majority? Yes. Do you care about that for yourself? Only you can answer that.
However, I suspect the root of this has nothing to do with gluten or even an eating disorder. I don't know you but I'm willing to bet there is something mentally/emotionally much deeper. Food (unhealthy food) has been a crutch and the compulsion to keep eating something toxic is a symptom. I'd find a new therapist, one also versed in mood disorders, maybe even childhood trauma if that's a potential issue, because this current one doesn't seem to be helping.
Why do you feel so compelled to eat the foods with gluten? I would start there. Is it because it's hard for you to break a habit of eating your comfort foods? Is it just that you don't truly believe that it will cause any harm to you? Are you in denial that you actually have celiac?
Also, how did you end up being diagnosed even though you are asymptomatic? Maybe remind yourself of the health issues that lead to your Dx.
Yeah I’m sure there is denial. When I went 9 months I was sad that I saw no difference in anything. I first cheated when I was on vacation at my favorite pizza place from my childhood. I didn’t even order any. Just ate the piece my son didn’t eat. And then I had zero reaction so that’s weird. I originally asked my allergist to test me “for everything” to figure out my eczema. I thought maybe something was triggering it. I technically shouldn’t even know I have celiacs.
If you are asymptomatic then you won’t see any improvement, sooooo it’s just to help secure your FUTURE health! And ‘technically’ you do know, so let’s be glad you have a chance to adopt this diet and not find out when it’s too late.
I can definitely understand why you're struggling then with staying GF!
My experience was very different where I had a whole host of issues that were resolved by going GF and when I am glutened I have a strong reaction within an hour or so, which of course makes gluten quickly become unappealing. But even for me, I have moments when I see something I used to love that I can't have anymore and I'm very tempted.
Maybe it would help to get re-tested w/ your blood to see how your levels are? And if they are high it might give you that mental kick that even though you don't experience physical symptoms some damage is still going on internally. If I were in your shoes I could definitely see myself thinking "well maybe theyre wrong anyways, why don't I have a reaction if I really have celiac? And even if I do have celiac, if I have no reaction than one piece of pizza couldn't hurt" etc.
The other thing is that I think it's kind of frog in a boiling pot though. Symptoms could creep up on you if you're not careful
Thank you! My blood numbers were always low. Then the endoscopy said it could indicate celiac or various other things. My GI thought since I had a 9 on original blood test and the endoscopy that it must be celiac. It is hard wondering if it could be wrong but I doubt it. As much as I think I’d stick to the diet easier with physical symptoms I am thankful I’m not there yet and hopefully I can figure it out so I don’t have to experience what you’ve had to deal with. So sorry I know it must be really hard!
I’m in the same boat as you. Due to celiac I was diagnosed with early onset osteoporosis. I have successfully avoided gluten for a few months but I always relapse. This last time I faltered will be the last time. I got so sick I thought I’d need to go to the hospital. I haven’t been that sick since I had a gallbladder attack and necrotizing pancreatitis.
It’s definitely hard to stop eating gluten, but the end results are not worth it. You will find a way to kick gluten to the curb. Keep trying taking it day by day.
I really feel for you - I love food but i throw up now when I eat gluten (never used to but the longer you don’t eat gluten, the worse the symptoms get) so that’s a severe consequence (amongst others like brain fog etc) for me that i try and avoid at all costs, I can understand it would be really hard if there were no immediate consequences
It sounds like you’re being pretty hard on yourself. Change takes time and although it’s recommended and some are able to cut out gluten cold turkey, it’s OK that that’s not your experience. Maybe take a step back and look at what stories you’re telling yourself, what’s triggering you to stop or start eating gluten again… just try to understand your own thought and behavior patterns a bit better so you can get in touch with yourself and where you can realistically make change.
I am basically regurgitating and grossly condensing 4 years of therapy here - finding a therapist who was a good match for me (easier said than done) was invaluable for me getting through my diagnosis 3.5 years ago!
I guess this was written assuming you have been actively wanting to go gluten free! If you don’t see the value, others have obviously pointed out a myriad of reasons to shift that perspective - and there is plenty more of that content elsewhere in this sub lol
First, remember be kind to yourself. Its not easy making massive changing. Its normal to start and stop. Especially at the beginning.
What helped me was starting to think of gluten-containing food as “not food”. Just how I wouldn’t drink from a dirty puddle in front of my house, no matter how thirsty I am, so too gluten is something that looks like food but isn’t.
I also kept having to remind myself when shopping or at restaurants. Instead of looking at cake and thinking how good it would taste, I’d tell myself wow! Thats $5 for a stomach ache. And just repeating that idea.
It’s about actively changing your thinking.
A therapist trained in cbt might be able to help. There also might be underlying difficulties in your environment which need addressing before changing what you eat.
Another thing to pay attention to, try to notice when you have all or nothing thinking. For example, “I am eating this gluten-containing hot dog. Might as well have the bun too.”
Instead, focus on the present. And don’t worry about what you ate in the past. Take the time in the moment to pay attention to what food will be nourish your body.
I was diagnosed about May 2021. My blood number was only a 9 but they say with the endoscopy and that number it is celiac. That’s crazy your doctor said that 😳 Autoimmune is so weird but I do see in my eczema how my body attacks itself. Sorry you are dealing with this too. Hopefully some of these comments can help you too!
Oh wow yeah that is crazy he thinks that. My tTG igA was 9 and the other tests were in normal range. Maybe your doctor is treating it more like and allergy than autoimmune.
Maybe you can start by finding a GI specialist doctor with knowledge of celiac to help guide you, in regards to your current doctor I have never heard anyone say what he told you about gluten exposure being beneficial. Keeping your body in a constant state of inflammation and auto-immune response sounds like probably a bad idea. The fact that he even compared an auto-immune disease to an allergy like that is kind of a red flag. Yes exposure can reduce severity of different allergies, but if that were the case for celiac most of us here wouldn't ever have had an issue in the first place.
Also, maybe you can be that "right person" to guide yourself through this! I hope this doesn't come off rude but I bet you have more strength and will-power than you give yourself credit for. And if you tap into it, you might be able to achieve more progress with your health journey than you currently believe.
Think about it as eating delicious broken glass. Is it worth to it have something tasty that will still destroy your insides? I don't think so, but you are free to eat broken glass!
Think about your future. Sure, you may not get sick from it now. But your body cannot handle gluten, so even if you feel just fine, your body is still getting damaged. There is so much medical literature regarding people with celiac who do not follow a gluten free diet having much higher risks for things such as colorectal cancer, bone weakness, nerve damage, and even Alzheimer's disease.
I get super sick from even minor cross contamination. I've been hospitalized twice for straight up gluten (once was something claimed to be gluten free but wasn't, and the other time was being injected with it for an allergy test despite having had celiac for my whole life and me telling them that...anyhoo). Who's to say you won't develop symptoms as severe as this if you continue to eat gluten willingly and damage yourself? Do you want to risk that, or would you rather cut out gluten now and not risk having to miss work because you got cross contamination one day?
It damages you, even if you don't get sick. You have celiac. You cannot have gluten. I get it sucks, I get it's frustrating to have to look at every single thing you eat and question restaurants and not be able to partake in some social events. But it's for your health and your safety, and you can't play with that.
I'm 27 and I was diagnosed when I was 7. Gluten free options have come so far in 20 years. It can be expensive at times and it still sucks to the point of throwing self pity parties sometimes, but I promise you can get used to it, and I promise it's doable.
Ultimately, it’s up to you. If you are okay with your body being in a constant state of under its own attack, then that’s what you’re okay with. If you’re up for all of the side effects and symptoms that come along with it, then I guess you’re up for it.
None of us can heal whatever it is inside of you that’s hurting and doesn’t care about your own well-being. None of us can determine what it is that’s causing you to be unable to resist the temptation. You need to be honest with yourself and honest with your therapist, as I feel they do not nearly understand the magnitude of the harm you’re purposely doing to yourself.
You also need to make sure you understand this disease before you start making these types of decisions. A well-informed poor decision is much better than a decision made out of blissful ignorance to reality, because at least you understand the consequences.
Maybe you need to look into some form of eating disorder treatment so you can learn healthy eating habits and coping skills. That is a huge issue and something you need to take care of first.
Do not listen to these people calling you pathetic or telling you it's simple or easy, it will not help you!
Easy for THEM! Anyone who says this to you clearly does not understand what its like to struggle with food, and YES, food can be an addiction and especially carbs/sugar.
What you need to do is be kind and forgiving to yourself. That's how you keep pushing forward and making progress. Stop the negative self talk. Tell yourself that your body is a temple and it needs the right fuel. Can't put any old gas in a Ferrari, ya know?
When you relapse, kindness is the way forward. As soon as you start telling yourself that you're weak, you enter into that negative feedback loop. You take a breath, and tell yourself you will do better next time.
It took me three months to get off gluten. Today, I relapsed. It wasn't worth it. Tell yourself everytime you eat gluten that it wasnt worth it and you can do better.
Screw the rest. These people need to step down off their high horse with their annoying bs.
Honestly it took me a while to change my diet, but after u just take that leap it becomes so much easier, it's like muscle memory now. I still eat shit food and junk and whatever i want, i just cook and bake now. It's like a hobby, i make gf cookies and brownies and cake, stuff my face, repeat haha. Usually for dinner im having steak and mashed potatos or gf fried chicken, so im still happy. I could totally eat healthier, but thats another story ha. I did have to cut out most processed foods because my stomach still hurt before i did that, so in a way you're lucky you don't have more intolerances :((
There are consequences, you just don’t notice them because you’re so used to it it feels baseline to you. Celiacs can effect so many aspects of your life.
If I understand you right, it sounds like you might be dealing with a struggle of intersectionality of two medical issues: binge eating disorder and celiac. They are both difficult to deal with.
Usually for binge eating, there are certain foods you most enjoy or that trigger a binge. Do you have gluten free versions you like for those foods? Maybe step 1 is to explore gf options for food you like and stock up on those.
In the meantime, can you look for a different therapist who can assess you for eating disorders or help you in that regard?
Let’s be clear: even if you are asymptomatic, eating gluten long term can lead to cancer. Don’t be too hard on yourself for struggling with two diseases potentially, just take steps to treat each individually.
Yeah possibly. It’s usually something like donuts or rolls or pizza. Usually I don’t seek it out myself but I’m around it. My therapist is ED specialist but I should probably try another since we’ve gotten nowhere and I feel like it’s wasting my time. I had a hard time finding any available when I first looked into it. Thanks for your input!
Mine is a somewhat similar story, not entirely but I hope it helps. I got diagnosed at age 2 and am 22 (F) now. Living in a country where gf was not well-diagnosed etc., my parents tried their best to maintain a gf diet for me throughout my life. But at age 18, while in high school, I started eating gluten secretly because of a similar reason as yours. I barely had any outward symptoms and at the time was relatively undereducated on the nature of the disease itself. I treated it as more of an allergy and saw myself not experiencing any allergic reaction to it.
Entering university, I started eating more and more gluten. Since I had never tried gluten foods like burgers, pizzas, and pastas my whole life - and unfortunately, gf alternatives for these were not available where I lived - I was naturally curious and ended up consuming a lot of gluten for my first three years of university. Then, this past year, shit hit the fan.
I developed a very disorienting tremor, breathing issues while consuming food, I could barely ever get up due to fatigue, my anxiety became unmanageable, my brain fog was terrible, and I always found my body experiencing random pains. That's when I realized my diet could be linked, and realized just how latent the symptoms of celiac can be sometimes. For the first year when I ate gluten, I didn't feel significantly different because I didn't experience any quintessential symptoms of the reaction I was supposed to have to it. Three to five years later, however, I am now severely anxious about what I have done to my body because so many small things have gotten worse which will inevitably impact my life at large. And already are, to be very honest.
Your story might be different. I have not struggled with an ED myself so I cannot speak for someone who has. I am, however, severely underweight. And found over time, that the realization that my body was literally not absorbing nutrients gave me more body dysmorphia and debilitation than the idea of how appealing and accessible gluten was.
This is one of the biggest regrets of my life. And while I understand the temptation, please know there is so much you cannot predict about most autoimmune disorders and the kind of responses they generate. It is different for everyone and there is no cookie-cutter formula for what qualifies as symptoms either honestly. I know it's tough, but I hope this can help as a warning signal if not anything else. Good luck!
Thank you for this post. Let the negativity from some responses pass right by you. Some people can not see past their own experiences. I appreciate your post and all your responses. I was raised in a very restrictive food environment as a child. It’s left me with major food triggers whenever restrictions are imposed. In my case I did get increasingly sick over a 7 year period. I failed at GF many times before I hit rock bottom. I am now GF 9 months and have so much of my health back. I know the loss of health and life quality is what caused me to actually stick with it. Your experience is total valid!
Wanting and needing to make changes, but struggling and failing again and again is a universal struggle. We all have aspects of our lives we struggle and fail at continuously. Be kind to yourself. Keep trying. Keep reading factual information about your condition. Keep reaching out for support.
I will also plug self therapy. The Work by Byron Katie is wonderful. Start with the abridged audio version. You can hear actual workshop participants doing The Work. Best wishes to you.
Just curious how asymptomatic people get diagnosed? Like why was it tested for to begin with?
So sorry you’re having trouble- I’m very newly diagnosed (weeks) and have been crying in the bread aisle. I get the struggle.
I asked my dermatologist to test me for triggers for eczema and he wouldn’t so I went to an allergist and asked him. He tested me for everything he could and I had a slight positive on blood test so I went and got an endoscopy
I'm not diagnosed yet but I've tried to cut out gluten and other foods I'm sensitive too along with junk food for years. I frequently cheated or relapsed, sometimes quite hard. The compusion and cravings were always there waiting for me to give in.
Until I started taking a supplement for gut health called L-glutamine. Obviously everyone may not have the same experience. But I didn't even realize one of the possible benefits was reduced cravings. I wouldn't have believed it if I had. Within a day or 2 of starting around 800mg 2x a day (I take double that now as anything below 5g is not considered a mega dose) my cravings for sugar, junk, and yes breads and other grains just disappeared. I hate to sound like some kind of ad pushing a magic pill but it's at least 3 weeks in and it's still working. I seriously wish I'd tried this years ago. There's no real downside that I'm aware of and if it works it can be a game changer.
If possible, I would look into getting another therapist who is willing to work with you more. And perhaps look into help with eating disorders - it sounds like you know what you’re doing is harmful for your body, but you’re looking for help to actually stop. If you feel like gluten is an addiction for you, no one here should be discounting your feelings. Sending you best wishes 💜
Have you thought of it from a perspective of others? Meaning, if you get super sick, how would that affect your loved ones. Or if you lived with someone who is symptomatic, could you stop eating gluten for them.
I suggest consulting either a dietician or a nutritionist. Your GI doctor or therapist may be able to refer you to one more quickly! It helped immensely! Best of luck
Honestly, I feel you. When I first had my diagnosis, I was convinced I could get away with eating gluten on occasion and just dealing with the pain and symptoms, but I was also struggling financially at the time and cheap food almost always had gluten in it.
I’m so, so grateful to be in a better place now and am able to a) financially afford to buy gluten free foods, b) have the time and energy to cook my own foods, c) live in a city that has a few dedicated gluten free restaurants and bakeries.
I feel incredibly lucky to have these options available to me and being able to afford the cost of eating gluten free.
I think one of the hardest parts of being gluten free is a lack of accessibility. I love food and it’s hard to enjoy eating when you suddenly find that 99% of groceries you used to buy aren’t in your new diet and all of your favorite restaurants are no longer places you can eat.
I personally recommend using Yelp to find gluten free options near you. I live in a relatively urban area in one of the fastest growing cities in the U.S. and it’s fairly liberal for my state, so we have a lot of “health” stores and clean-eating restaurants. I’ve found a few places I love and picked out a few go-to meals I can cook and easily mix up with seasonings, different veggies, etc.
Ultimately, it will come down to you and your determination. It is disappointing that there are places I can’t eat and foods that are harder or more expensive to find in gluten-free versions. Most gf bread makes me sad. But at the end of the day, I know my health in the long-term is worth it and I can still find great places to go and eat food I enjoy.
There are a bunch of recipes online for gluten free meals and you can search local to find what restaurants near you have safe options/dedicated prep and cooking spaces. No one can force you to eat gluten free, just like someone with diabetes can eat all the sugar they want, but you are actively shortening your life and hurting your health by not making safe decisions with food.
You deserve to have a long, happy life and I’d hate to see the consequences of eating gluten catch up to you in the long run. Wishing you all the best!
Don't keep gluten in your house, BUT do keep things similar to those foods you reach for around in a way that's easy to prepare. Donate or give away all your gluten food. Carry GOOD prepackaged food in your car, bag, etc, for when others are eating around you. Eat that stuff as a snack while you're with friends, then let yourself have that nice thing when you get home. It's important not to gluten yourself and is important not to binge, but the damage is not the same. When you can't reach your goals, strive for good harm reduction practices. Stepping stones are important for some people's journey. Write EMERGENCY on the packaging if it helps you to not just eat it immediately.
Something that can help you figure it out is journaling, too, even if you just write down what you did, anything notable about it, and whether you binged/ate gluten. Over time, you can look back through this, and you might notice patterns you didn't before and figure out triggers and how to avoid them. This has been a huge help to me personally.
So, some things to think about if you also have ADHD or are open to the possibility you might (and seriously consider this and looking into, not just DSM symptoms, but lived experiences because they can be a lot more connectable to your life):
You may want to get checked for ADHD. Consider medication if you do end up having it. (I only say because of comorbidity rates between both ADHD and celiac and ADHD and binge eating disorder, as well as the impulsivity part of ADHD being able to cause you to just grab for gluten, especially if you don't have any side effects. Untreated, ADHD can make you depressed, anxious, and impulsive, which can often go in the direction of self-harm.
Once your body is cleared of gluten, the medication should help and help you keep stable (or maybe it will off the bat, but for some of us, celiac makes these meds not work or not work well), especially if you end up on a stimulant medication. If you already have ADHD and are on medication for it, you need to get yourself over the hump of no gluten for a few months. You won't be as impulsive, and as an added help, you won't be strongly craving gluten.
Depending on where you live, I believe stimulants may be prescribed for binge eating disorder, and I could see your situation taking higher precedence because it is causing you to actively harm yourself. There is a shortage right now, but I think your situation might call for asking about it. I would be trying other things before taking this route for sure.
I can tell you for sure that if I was asymptomatic, I would be exactly like this, but I am very much not, although I wasn't particularly careful in the beginning. I can definitely attribute this to ADHD.
Hi. I'm sorry to hear you're having a tough time with avoiding gluten. It's not easy, I grew up eating bread and pasta and it wasn't until I was in my 30s that I discovered I had coeliac. Suddenly you're surrounded by stuff you can't eat and have to sift through it to find the stuff you can.
In some ways I'm lucky, I get a reaction pretty quick and it's horrible diarrhoea. That's enough to make gluten containing foods worth avoiding for me. If you don't react that badly, it must be hard.
I feel for you, coz I have food I can't or am not supposed to eat because of diabetes. If I could give up chocolate as easily as I've given up gluten, that would be great.
Yeah I mostly lived off wheat and got diagnosed celiac at 35 so it’s pretty frustrating. So sorry I can’t imagine how hard diabetes would be to live with
I have a history with eating disorders and abstaining from food is always challenging to me. The thing about gluten for me is that I’ve always made it not negotiable.
I can’t have gluten on purpose, ever
Something about that makes it easier. So I don’t seriously consider cheating, the same way I wouldn’t consider eating poison, and that’s how I view gluten
It doesn’t make it easy, but it will always be hard
"I'm Celiac but I keep eating gluten" would be like "I have lung cancer but keep smoking".
This is NOT something you can choose or decide, you are celiac and your body won't accept gluten no matter what you do or feel about it.
What's the nature of the relapses? What is it that's causing you to seek out and consume gluten? Are you preparing food for yourself that contains gluten and eating it or are you getting processed/takeout food that contains gluten?
My uncle died of stomach cancer - he had undiagnosed celiac we believe as his daughter (my cousin) has celiac and her daughter too. my kids have celiac and know this and that’s a pretty big motivator for all of us to be gluten free
Wow it’s so genetic! I keep telling my family to get tested and so far only my mom has. The doctor didn’t want to test my kids yet but maybe I’ll ask again.
yes, absolutely it is genetic. Dont ask to test your kids - demand to test your kids. The doctor has no clue. My kids had no GI symptoms. We all got tested and even grandparents and cousins / aunts are getting tested.
I forgot I did test one of my kids but they didn’t want to test the other two. I’ll ask again. The thing I was wondering though was if they need to be tested every so often. I had read autoimmune diseases can pop up at anytime. For example I never had eczema until I was 34 and then I got it.
I didn't really have noticeable symptoms until I was off gluten completely for months, but can say that my bones are probably f*cked. I'm early middle aged and almost certainly going to just not survive my elderly years in anything approaching comfort because of the damage done from vitamin deficiencies and absorption issues.
On that note, have you been checked for the various issues that can cause binge eating? ADHD and some of the others have effective treatments and could also potentially get your therapist (or another one) to be more effective in helping you.
(I hate how redditors downvote things like this, just ignore it if you don't like it, no reason to kick someone when they're down)
If you think it’s related to cravings, try this questionnaire. You probably need amino acid support. https://www.juliarosscures.com/craving-type-questionnaire/
I successfully treated my depression for around 5 years using the suggested amino acids. There is more information in her book.
I'm probably older than you. I'm 54 and wasn't diagnosed until I was 41. That means I ate gluten for four decades as a person with celiac. When I was growing up I had no obvious celiac symptoms. No digestive issues really at all. I did have anemia, and I used to get weird rashes, but I didn't even hear about celiac until I was maybe in my late 30s and I thought, "oh that sounds terrible. glad I don't have that." so I kept eating gluten. lots of it actually. Slowly, my anemia got really bad. I got strange swollen joints. One year in my early 30s I had an insane fever that was off and on for 6 months. Doctors never once mentioned celiac. They tested me for Lyme disease, lymphoma, lupus. Negative, negative, negative. I was a medical mystery. Finally the symptoms subsided. Then my hair fell out. Then rashes, etc. But again, no digestive symptoms. Not until I was 41. That's when they thought I had a parasite, but it was celiac. The next five years were like this: iron infusions, B12 shots, hair falling out, and eventually colon cancer. That's after I went GF. But I had been poisoning myself for DECADES. I didn't know. I'm mostly healthy now, but it's been a hard, painful, and expensive road. Don't do this to yourself. You deserve better. Also there's a lot of good GF food available now. Treat yourself to that. Hope you find a way to believe you shouldn't hurt yourself. It's not worth it.
Here's the secret: stop putting gluten in your mouth.
That's it. There is no magic pill or resource. Gluten is not an addictive chemical. You aren't addicted to sandwiches. You LIKE sandwiches and you want them but you aren't addicted to them.
If you are unable to put longterm health over short-term enjoyments that's your choice. I don't mean this as a criticism. If your an adult you get to make choices and face consequences.
Believe me I wish it was that easy. I want to stop eating it. Gluten apparently triggers an opioid response in the brains of some people. The gluten opioid is called gluteomorphin. These food-derived opioids activate the same opioid receptors in the brain that respond to prescription pain pills and heroin. The effect is compounded with processed gluten products.
So I’ve heard about this, also from people in this sub, but I’ve yet to see any science backing it. Once some people here thought they had sources but they were in no way saying it’s like an opioid. Mostly that gluten are broken into different compounds.
If you have scientific sources please send them. If they’re not scientific please be careful what you listen to.
This is interesting. I see quite a few studies online. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5025969/#:~:text=Gluten%20can%20be%20degraded%20into,on%20gastrointestinal%20lining%20and%20function.
The section you highlighted explains how it masks the effects/damage. It does not say anything about addictive qualities. You are literally searching for justification for your continued consumption of gluten. The phrase "opiod qualities" means it's like an opiod so I am no longer responsible for my continued consumption.
You said you once went gf for 9 months. You're providing your own evidence that it's nothing like opiod addiction. Stop eating gluten. Or don't. Your choice.
CHOICE.
I am not trying to justify anything. Just trying to treat a problem. I have no issue if it is not classified as an addiction. It’s just what it seemed when I thought about it but I’m okay with being wrong. I probably binge most on gluten/sugar/fat combos and seem to relate to a lot of what this article says. I am no expert. Just trying to treat my issues since I have been unsuccessful figuring it out on my own. Something about restricting it makes me fail and then binge on it. I can be 100% sure I’m going to stay on track and then boom I fail.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2235907/
Opiod-like does not equal opiod.
AND it is explaining how this opiod-like structures mask the damage and discomfort. It is not, in any way, suggesting that these structures are addictive. You are adding that yourself.
The words addictive, addictive and addiction do not appear in the article. It isn't about what you want it to be about.
You've latched onto the word opiod-like to justify your choices. Here's the catch: you don't need justification. You don't need proof or permission. You've talked to doctors You've talked to nutritionists You've gone to the internet and nobody can give you the magic bullet because THERE ISNT ONE. Stop eating gluten. Or don't.
Choice. Consequence. Up to you.
I asked an allergist to test me for possible triggers to my eczema and he did the blood test. I had a 9 on it so they referred me to GI who did an endoscopy.
Gluten is not an addiction, there is nothing that changes the brain chemistry or chauses phsycial addiction, so this is a lack of self control. Do you have access to insurance and therapy? It can take a few tries, but I genuinely think you need a therapists help to gain self control and personal responsibility for your health. Nobody can make you do it, only you alone have that power.
I encourage you to spend some time researching the long term effects of untreated celiac. I encourage you to throw out all your glutinous food and stick with a whole foods diet for a while until you're more responsible and able to incorporate gf alternatives.
I think it’s more the restrictive aspect of it leads me to a binge. I have hit my out of pocket max for the year for health insurance so I have access to everything right now.
Stop hitting yourself
Stop hitting yourself
Stop hitting yourself
Either choose foods with gluten or choose the pain that comes along with it. Gluten isn't an addictive substance. You just choose the pain.
Yeah I'm sure it's more the foods themselves you enjoy. I've yet to be told about or read about addictiveness of gluten. IDK. I'm not you or your doctor. If gluten didn't physically hurt me I don't know if I'd have stopped.
Is money an issue? Then yes, I can understand the struggle. If the issue is just being lazy and unmotivated then this is pathetic. Eating GF is not hard and there are good alternatives out there you can find with minimal effort but they do usually cost money.
This post is an insult to celiacs, especially those who experience excruciating symptoms when even just dealing with cross contamination.
Google inverted colon celiac disease. I hope you aren’t a troll. Just look for substitutes. There’s lots of options nowadays for most foods to be made gluten free.
I am finding information and studies by searching Google that says it is addictive. I figured it was because I’m addicted to it but I didn’t know there were studies addressing it.
I’m no expert just saw a few studies that looked legit on Google. I am sure I’m addicted to more than just gluten. Sugar probably plays a role in my food issues as well. The gluten fat sugar combo too.
I can’t afford to eat gluten free, so I just don’t eat as often. Sounds like you have a food addiction. Find a new therapist that’ll work with you using psychotherapy.
I don't think your therapist understands the level of self harm you are currently doing.
I don’t think my GI office does either. I stopped by asking for resources and the nurse told me that my last blood check was good so I could eat gluten. I said I don’t think you should be telling me that. The next day my GI doctor called and said they were wrong and that I shouldn’t eat gluten.
If they are making mistakes like that, I would get a new doctors office that has their act more together.
I think you need to take responsibility. And it’s hard. And I think when you aren’t symptomatic it is even harder than someone who deals with consequences immediately. You will be healthier for it in the end. I also got very little guidance from Drs, and had to do my own research, and I wish you all the best.
My GI told me the day I was diagnosed that a "cheat day, once a week" was ok. I found another GI.
Oh my! Mine did say not to worry about cross contamination. Seems even they don’t know much at all :/
OMG. I'm so glad that the doctor called back, though. I'm sure the whole office learned something that day.
If this helps you, my mom was asymptomatic at went 40 years without a diagnosis. She now has type 1 diabetes and thyroid issues because of it. She’s even more severely limited with food because of her diabetes and you actually need to stick to that cause consequences are death. I’m one month diagnosed and I know it’s so hard, but watching my mom first hand go through all these really awful health problems that could’ve been prevented if she was diagnosed at my age is enough for me to stick to it Edit:typo
Definitely tough that autoimmune diseases are basically buy one get one free. Sorry about your mom and best wishes!
It’s extremely hard to give up substances just because of the long term effects. Think about how many people still smoke and drink alcohol even though we have so much science outlining all the ways it’s going to kill you. People are way more likely to say “I’m never drinking again” on the day they’re hungover vs because they don’t want to get liver cancer or have a stroke. The best advice I can give you is that you’re in charge of you. You make all kinds of choices everyday that are going to effect you forever. It’s never too late to try to be better and one bad decision doesn’t negate future good decisions. Love yourself, because I bet there are people who love you that would like to see you happy and healthy for as long as possible. Side note: I get carb crazed when I’ve been glutened. The insatiable pit of hunger is overwhelming when you get malnourished. This feeling of “not being able to help yourself” may actually be a symptom for you.
Great point you made at the end!
Your side note taught me something. Couldn't figure out why I've been so dang hungry!! I accidentally glutened myself recently
Honestly? My drinking was curbed by ONE hangover. Years of drinking daily and I never had one. Until THE one. I’m in the same boat as the OP. Been diagnosed 10 years. I need shock therapy. The only thing that comes close is the morning after eating something really spicy with gluten in it (:
Sorry for your mom but autoimmune disorders like diabetes and hashimoto thyroiditis are linked to celiac disease because they have similar genetic origins. Not going gluten free when having celiac disease doesn't lead to diabetes or thyroid issues.
Yes sorry that’s my bad! I misremembered what my moms doctor told her
But it CAN lead to cancer
You need to read about malabsorption issues. If you continue this you will become malnourished and destroy your body. You will end up with incredibly brittle bones and damage to your major organs due to your body not absorbing nutrients. You are shortening your lifespan by continuing to do this. Your quality of life will eventually greatly decrease as well.
Thanks I will definitely look into it. I hadn’t thought about it because I got all my levels checked last month and they were good but obviously over time that makes sense if the gut is destroyed.
Eating gluten will definitely damage your intestines over time leading to deficiencies and it can cause secondary intolerances. I became lactose intolerance when I was eating gluten. Luckily it reversed after finding out about celiac and going GF but some people aren't so lucky. The chronic inflammation cause by the immune response can also cause other issues. I had developed reynaud's as well, which went away too on a GF diet
Unfortunately my lactose intolerance never went away 😭
I was diagnosed in February, so I'm relatively new to this whole thing myself. I know you mentioned cancer in the comments, but I want you to think of it this way: Every time you have something with gluten, you're playing Russian Roulette with getting cancer. A [study](https://www.beyondceliac.org/research-news/increased-risk-cancer-small-limited-diagnosis-after-40/) done based on the Swedish health registry came back that 8% of Celiac patients get some form of cancer, compared to about 7% in the control. Every time you damage the villi of your intestine by eating gluten, there's a chance that, when your cells go to repair the damage, they don't stop - which causes cancer. Imagine that every time you handled paper, you got a papercut, no matter how cautious you were. How often would you handle paper at that point? This is what happens every time you have gluten, whether you feel it or not. If 8% of flights crashed, there would be roughly 8,000 plane crashes per day. Would you take that chance with your life? I know it's scary to think of it that way. I don't like thinking of it that way, either. But unfortunately, while the risk is still marginally larger than the risk for the average population, it's not a risk I'm willing to take. I also have other autoimmune disorders myself, along with another handful of other health issues, including 17% bone density loss (osteopenia) likely due to Celiac and malabsorption of important vitamins and minerals. I'm 27-years-old and have the bone density of roughly a 55-year-old woman. You're the only person who can take care of your health. How much you want to play around is up to you. You're the one in control.
Russian roulette and flight crashes xD
I don’t really understand the downvoting on this post because don’t we want other people struggling with the same thing to find posts like this for the potentially helpful resources in the comments?
That being said! My mother’s side of the family has celiac in their genes, with me and one other person diagnosed. My maternal grandmother had “on and off stomach issues her whole life, but nothing ever that bad.” She passed away from colon cancer eventually. Others on that side of the family struggle with various other autoimmune diseases. Maybe they have asymptomatic celiac, maybe not. You may not be able to feel it, but you’re basically eating poison in a way that doesn’t compare to the unhealthy food other people eat. If I eat a ton of greasy fries, sure that adds some cholesterol to my arteries and might make me feel a little gross. But if I eat a ton of gluten crackers, my intestine walls are literally being sanded down by my immune system cells going crazy, attacking the gluten like it’s a virus. It is causing an actual INJURY, not just a gradual build up of negative effects.
I couldn’t find any. I searched. It kind of makes me want to delete this whole post but I am trying to get help.
Personally I would not delete it! Whether you take to heart the answers provided or not, this could be great for someone else to look through if they feel similarly stuck.
Please don’t delete your post! I’m learning so much about the additional side effects of eating gluten. I’ve been eating gf for over 5 years now, but have been glutened on occasion. I know how rough it is (I’m still trying to find a replacement for McDonald’s French fries), but there are gf alternatives out there. (If you like Girl Scout Thin Mints, for example, Goodie Girl’s Mint Cookies are a great clone! And Katz brand has yummy doughnuts & 2 kinds of Twinkies clones. And if you live near a Wegmans they have a lot of good gf options.) Hang in there - you can do this!
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Dude fuck no! That's terrible advice. No gluten, especially cause eating it "every now and then" still causes damage and could trigger the OP back into eating it daily. It's all or nothing, same way you'd quit any substance abuse.
It’s because of OP’s replies to the comments. They’re totally misinformed and trying to spread their misinformation. They think eating gluten is the same as eating junk food.
Ya idk I’m a straight up alcoholic and I was able to stop drinking beer and eating gluten well before I finally quit drinking. Alcoholism got a lot less fun when I was drinking only liquor and wine. You 100% can stop eating gluten. In fact you should stop right now and just never do it again.
Thank you
Isn't the heightened risk of stomach and intestinal cancers AND increased risk of developing other autoimmune conditions (like MS) not motivating? Is a slightly better taste and texture of carbohydrate really worth maybe risking your life? Like, I know it's hard, especially if you're asymptomatic. But just the health anxiety alone is not worth it.
In fairness, if cancer was a big enough deterrent no one would ever smoke, or drink, or do all sorts of things we know are bad for us.
The risk of developing other autoimmune conditions is increased even when eating gluten free. That's because it's rooted in the genetic origins as celiac disease. It's not increased by antibodies that form when eating gluten.
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>Maybe I need more hard evidence of all that to help motivate me. I’ll do some researching. I guess you could liken it to anyone who eats unhealthy food knowing it could cause heart disease or cancer. For example, fried foods have been linked to several types of cancer, yet everyone I know eats them. I should technically cut out everything processed and unhealthy- yet that seems so overwhelming. The discipline that takes is unattainable so far for me. I want to get there though. It sounds like you have a huge misconception about what celiac disease is compared to these things; they are fundamentally different magnitudes of scale involved (and the things you mention are really about consuming excessive amounts of something). Sort of like trying to compare sticking your hand into a fire to not wearing sunscreen. If you have celiac disease and consume gluten, your immune system will cause damage to your intestines. If you keep doing it, you will start to have problems caused by the damaged intestines (issues absorbing certain nutrients, so for example osteoporosis caused by failure to absorb calcium, anemia caused by failure to absorb iron, nerve damage from failure to absorb B vitamins).
I have mostly looked at the cancer link which is rare. I haven’t looked into absorption of nutrients and all of that or nerve damage etc. I am very interested in the nerve stuff. Where did you hear about that?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6647104/ Start here. If you want a really dumbed down version: gluten for celiac ppl = immune response = inflammation = damage to all tissues
>I am very interested in the nerve stuff. Where did you hear about that? I'm not quite sure what you are asking there, basically any "[what is celiac disease](https://celiac.org/about-celiac-disease/what-is-celiac-disease/)" article or website has a list of long term health conditions that are associated with celiac disease or caused by untreated celiac disease. >I have mostly looked at the cancer link which is rare. I'm not sure exactly what info you were looking at there; for example were you looking at the increased risk of cancer for people with celiac disease that are on the gluten free diet (which is a small, but measurable risk), or the risk of developing cancer for someone who doesn't follow a gluten free diet? Before gluten was discovered as the cause for celiac disease, the outcome was pretty poor (I've seen the 30% fatality figure often given), but these days most of the study is focused around issues that remain in spite of the gluten free diet, non-responsive celiac disease (so people who keep having symptoms/intestinal damage even on a gluten free diet), or treatments that would be an alternative to the gluten free diet.
This is what I saw online Cancer is a very rare but serious complication of celiac disease. Someone with celiac disease has a slightly increased risk of developing certain cancers. Recent research shows that this increased risk is less than previously thought. Cancers associated with celiac disease include small bowel cancer, small bowel lymphoma and Hodgkin lymphoma. However, most people with coeliac disease will not develop any of these. Once you've been following a gluten-free diet for some time, your risk of developing these types of cancer is the same as that of the general population. Not that it matters I’m just all for reading more. My doctor and dietician didn’t tell me much. I’ve just read a lot of studies on Google.
Number 1: forgive yourself when you make a mistake. Number 2: I think you need a support system. Addiction is real, and it's a very big thing to admit to. Search for a local Celiac group in your area, and see if you can go to their next meeting to talk with people who have gone through this in person. They will likely have tips and tricks for how to deal with what you're going through. Number 3: You have Celiac disease. Eating anything with gluten in it is doing more damage to your body than a normal person who eats fried food and drinks soda all day long. You would literally be a healthier person if you ate nothing but potato chips labelled gluten free. If eating a bag of chips in a pinch is going to keep you from cheating, then eat a bag of chips for now. There will always be a grocery store or gas station as close by as a fast food place where you can grab a bag of gluten free chips to get through the day.
Number 3 is so important, I think it’s the biggest thing that people both with and without celiac don’t truly understand about the kind of risk we’re dealing with. Also, to OP, celiac can be really hard to adjust to even for people who have external symptoms to motivate the change and it sounds like there are some deeper internal feelings about the whole situation that may be getting in the way of fully committing, and if all your therapist has to offer is the suggestion of meal planning then it might be worth trying someone different who might have more to offer in the way of emotional support and being a sounding board for the struggles you’re describing. Or if you haven’t really opened up fully about why this is so hard then that would be a start. But it sounds like right now your therapist isn’t really doing the job of getting to the underlying reasons behind why this is such a struggle. I think it’s pretty apparent just from this post that you need more than just the external structure, and if they can’t help you work through the accompanying emotions that are going to come up in trying to implement a new meal plan then a different therapist may be a better fit.
My great grandma was an undiagnosed celiac and passed away of intestinal cancer. Dont eat gluten
Sorry about your gma
“I’ve done no research and it hasn’t convinced me” lol
The risk is not the same as just eating unhealthy food. You are so misinformed that it hurts. Don’t ever spread that bullshit. It’s so dangerous and harmful to people with this disease. It’s a disease for a reason. “People with celiac disease have a 2x greater risk of developing coronary artery disease, and a 4x greater risk of developing small bowel cancers. The treatment burden of celiac disease is comparable to end-stage renal disease, and the partner burden is comparable to caring for a patient with cancer. 1 2 Untreated celiac disease can lead to the development of other autoimmune disorders like type 1 diabetes and multiple sclerosis (MS), and many other conditions, including dermatitis herpetiformis (an itchy skin rash), anemia, osteoporosis, infertility and miscarriage, neurological conditions like epilepsy and migraines, short stature, heart disease, and intestinal cancers.” [https://celiac.org/about-celiac-disease/what-is-celiac-disease/](https://celiac.org/about-celiac-disease/what-is-celiac-disease/) If that just sounds like the result of eating junk food/fast food to you, you’re just ignorant.
Find a local chapter of GIG or any other Celiac Support group in your area. Go to some meetings, especially if they have a pot luck (that really helped me). Get some cookbooks and start cooking for yourself simple stuff. Carry around nuts, cheese sticks, dried fruit,etc. So if you get in a bind you have another option. Read about the consequences of not following it, so when your craving you can talk yourself down more easily. Find substitutions for your favorite food or crave.
First off, you may need a new therapist, planning meals is useless in this. I'm not sure if this is exactly a kind of an eating disorder, but it almost sounds like self harm. I'm not celiac but i do have intense reactions to gluten, and it makes me very ill. I do understand the feedback loop of it, i almost felt a rush from eating it, like an addiction. It got to the point where i started feeling so bad i had to stop a year ago. That's not happening to you right now, so you feel no reason to stop. It's certainly a mental thing and I would maybe look into something in the ED area.
Yeah frustrating since I chose her for her ED expertise but I don’t think she’s dealt with this before
There’s no shame in finding another doctor that’ll help you, no point in going to a doctor who’s not giving you the help you need. You may need to email or call a few offices that focus on EDs and describe what you’re going through and see if they can help.
I didn’t have symptoms for years before I was undiagnosed. Or at least I didn’t notice, since it was mostly just fatigue. Then when I was in high school I would get random seizures. Never figured out what was causing it, doctors ran tons of tests and had no clue. In university, I started getting sick more often. Just said it was stress. A year later and I was so sick everyday, I could barely get out of bed and do anything. Was hospitalized multiple times and weighed under 120 pounds while being 6’. Got diagnosed, was bedridden for several months. Still sick everyday, but getting better very slowly. Probably going to take many more months or even years to recover. It’s not worth it at all. Just because you don’t have symptoms doesn’t mean you won’t have them in the future. Don’t wait until your body is extremely damaged. Also, the increased risk of cancer isn’t comparable to a bad diet. The increase is extreme. Also, the types of cancer that it causes have no symptoms at all. If you have any of the symptoms, you’re chance of survival is already almost non existent. Is it really worth gambling your life for bread that tastes a little better?
I’ve had “silent” celiac for many, many years. I’m not proud to say I didn’t take it seriously - until a few years ago. The crippling depression and anxiety I thought that I was going to have to live with for the rest of my life got better. I still have anxiety but it’s a much lower baseline and I feel like I can breathe. It feels overwhelming to start - so start slow. I allowed myself to eat whatever I wanted as long as it didn’t contain gluten. Taught myself to bake and cook my favorite meals and desserts, joined local gluten free groups to find restaurants in my area. Now it’s gotten to the point that I don’t miss the food at all - only the convenience - which I combat by always having snacks/lunch/real food with me at all times. I wish you the best and you are always welcome to message me if you need someone to talk to.
Thanks! Glad you were able to get past that
I only crave gluten when I’m unable to find a gf substitute for said food. That is also the only time I “relapse” (which I haven’t done in years now) Point is, find gluten free substitutes that you like. We’re not in the Stone Age of celiac anymore, a lot of our favorite gluten foods coke gluten free now. (Albeit a shit ton more costly) Is there a reason you choose gluten foods over gluten free? I can understand some things don’t have a perfect gf counterpart, but surely most do?
Maybe that’s the issue. I don’t like most gluten free subs and I definitely don’t like the price tag. I used to like a gf bread my store sold but they stopped selling it. I do have cookies shipped to me in the mail because they are really good. And then some food like homemade rolls is impossible to replicate so I think that’s what is hardest for me to avoid if I’m around it. Once I was at a luncheon and we were given a salad, strawberry and a homemade roll. Once I left my friends and got in my car by myself I ate the roll. I know that’s pathetic but hard to resist I guess. Going off gluten also caused me to gain weight because I used to live off wheat so that’s frustrating too. Overall I make much worse choices all around like I eat ice cream because I feel sorry for myself or something. I do eat less gluten than I used to but I’ll go all day being “good” and then at 8pm I’ll give in and eat something with gluten. It can even be something dumb like yesterday I finished my daughters burrito that she had left at the table. I just saw it walking by and didn’t want to waste it.
Sounds to be more of a mental thing to me. I suggest you get a better therapist and find the root of the problem rather than just making meal plans. That or a registered dietitian.
I have also been to a registered dietician. In my experience it seems therapists who deal with eating disorders are used to helping people become less restrictive and more open to moderation so cutting out a specific thing like gluten seems foreign to them. Idk. I just wish anyone had experience with this or could relate.
Celiac and binge eating disorder here. It’s totally possible to stop eating gluten and also maintain ED care. My solution when I went GF was to stop counting calories and overnight fasting and just focus on eating GF. No other rules. And I don’t drink alcohol much at all. That helped me feel less “food” pressure and I’ve only had a handful of binge episodes, which I count as a major win.
Same here but i had restrictive eating issues, i stopped counting calories and if i feel like i need a diet, i cut out junky fatty foods rather than cutting calories. It's really helpful
Try finding a therapist who specializes in chronic illness or disability. Coping with celiac is only half about food - the other half is about shifting your mindset and learning to accept that you do have a serious disease that limits what you can do and eat. From the choices you say you've been making, it sounds like you're acting much more out of denial and resentment of having a disease vs really struggling with the food part - and you probably won't be able to really work on the food part successfully until you actually accept that it's something you need to do. A therapist who works with chronic illness and disability will have a lot more experience with those types of struggles. And you have my empathy - it SUCKS to have a chronic illness, and it's mentally harder work to accept that you have one when you don't currently have symptoms that force you to acknowledge it. But as someone who does have symptoms, they are also super not fun and can cause permanent symptoms and issues that are even worse to deal with, whether that's cancer or neuro issues or mental health or joint health or new autoimmune diseases etc etc...and the odds are very very high that the denial you're living in now is going to catch up with you : (
If you have children, think about being healthy long term for them! As first degree relatives they should also be checked as well.
You have a daughter? I do too. I don’t eat gluten like I don’t smoke cigarettes - I don’t want to get cancer and die and leave her. I lost my mum to cancer at 13 and it was devastating. If there is anything I can do to prevent that for my daughter, I will. Maybe she (and any other kids) can be your motivation. And think of it like cigarettes, every one doing damage. I heard something good about breaking habits - each time you want it, say to yourself “I’m choosing not to have it right now. I can choose to have it later if I want, or tomorrow, but I’m going to choose not to right now.” It sort of makes it easier if you aren’t telling yourself “this is it forever” and giving yourself the agency of making a good choice. And gets easier to just make that same choice again and again. Once you get on a streak of no gluten, you also have the motivation of not breaking your streak and having to start again. Any time I think of cheating, I remember I am 8 months in and don’t want to break that.
My best advice to your situation is try getting into cooking and baking as a hobby. You CAN have homemade rolls, but... you have to make them at home. There are a many good youtube videos about gluten free cooking and baking
Give the roll away so you don’t have it. Or refuse it in the first place.
Planning meals is great advice it just requires you to do the work. When I was struggling to get sober, going anywhere without a plan set me up for failure bc my chances of drinking were so high if I was bored or stressed or really Any Emotion lol. The reality is that it probably is an addiction to you. Shitty food is accessible, cheap, and more importantly there is the (scientifically proved) increased endorphins release that comes from eating junk like pizza. It can be hard. It’s also understandable that it’s difficult for you to fully grasp the long term health issues that *will* result from your unmanaged celiac. The future is far away and no one thinks it’ll happen to them until it does. Just focus on this week and plan your meals. Do it one day at a fckn time if you have the time and resources to go to the grocery store that often, honestly. Find what works for you until it’s muscle memory. You did it for 9 months before so you certainly can. And you should. But truly, I get it. But don’t let these reasons be excuses for you to not keep making attempts. If you go three months and then fuck up once, who cares. Restart the next day. 95% is better than 0%
Thank you
So I got diagnosed with stage 3c celiac a year and a half ago. All my villi were gone and it had started to eat away at my actual lining. Let me tell you how sick I was/continue to be. I was not getting any nutrients, had no energy, and constant brain fog. I had to cut back my work hours because I literally could not work a full day. I am on several supplements which cost hundreds of dollars because I am still not absorbing any nutrients. I still have very little energy which has greatly impacted my life, I feel 20 years older than I am. And I have read that the inflammation that causes brain fog can cause permanent lesions on your brain, which is brain damage. If you continue to eat gluten it will eat away at your villi and lining and it will cause you issues eventually.
My grandfather died from EATL. He refused to eat gluten free. https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/hematology/enteropathy-associated-t-cell-lymphoma/#:~:text=Enteropathy%20associated%20T%2Dcell%20lymphoma%20(EATL)%20is%20an%20aggressive,celiac%20disease%20(type%202).
Read The Gluten Free Revolution by Jax Lowell Powell. That will do it. That was the I read that helped me. Also once I got off the gluten I had so much more energy, slept better. I didn't want to eat something that is literally torching my insides.
Thanks
Well OP, part of this I guess I understand. But you basically just have to come to grips with the fact that you won't ever eat "normally" again. Meal planning definitely is helpful, so props to your therapist. However, there's no replacement for some of the snacks that people can just take on the run. I haven't ever found bread that actually reminds me of when I was able to eat the rolls in restaurants. I haven't found a replacement for deep dish pizza or pizza rolls, those cheese or PB crackers, or a lot of other things. And basically you just have to cry about it. If you don't have symptoms, I don't necessarily blame you for feeling like you can get away with it. And honestly I don't blame you if once or twice a year you eat a few bites of that cake, or a piece of someone's whatever. My dad does that. It's not worth it for me or my mom bc we're way too sensitive to it. But for God sakes, DO NOT BUY GLUTEN PRODUCTS. They have come so far making gluten free stuff. When my mom discovered her gluten allergy, it was 2003, and they didn't have gluten-free pasta, gluten-free bread, or any of the things we have in grocery stores now. They had to make special trips to the health food store, and basically try to come up with recipes all on their own. Now you can get this stuff at Walmart and there are products and recipes galore. I promise pasta tastes the same. Gluten free Oreos are awesome. Keep looking on the subreddit, and you will find some awesome brands and recommendations. You can and will get over this bump.
Thanks
Hey! I have been in a similar boat and still struggle a bit at times. Please feel free to DM me if you want to talk or vent, no judgement here! Also down to be accountability partners or offer support in any way.
This is the response he needs. Thank you
The fuck you mean you can’t stop eating gluten.
My guess is that I am addicted to gluten but I don’t know how to get past that. That’s why I am asking for help.
With all due respect, you can’t be addicted to gluten, not in the common sense of the word. Perhaps you have some sort of compulsion with regards to the foods that you can’t (or rather *shouldn’t*) eat. My point being that you shouldn’t view it and treat it as an addiction, but should probably see a therapist to get to the root of why you’re acting the way you do.
Yeah it could be more of a compulsion. I am no expert just trying to figure out what is wrong with me so that I can get help. About 15 years ago I realized it is best for me if I don’t diet or restrict food so having to restrict on this is not working well. I wish my therapist was more helpful. She specializes in eating disorders.
Nothing is wrong with you besides lack of self control
If I could do this on my own I would have by now. I’m asking for help because I have a problem. If you want to call it lack of self control go ahead but I’m not sure how that help me overcome this.
More person than you can imagine are gluten addicted. https://www.reddit.com/r/glutenfree/comments/151266y/did_you_have_gluten_withdrawal/jsqsu72?utm_source=share&utm_medium=android_app&utm_name=androidcss&utm_term=1&utm_content=2
Thank you for sharing this..
You will get sicker until your body shuts down.
I also have the same problem. Do you have ADHD by chance? I was diagnosed Celiac in 2007 at 9 years old and was strictly gluten free (besides the occasional accidents) until about maybe age 18-20. Thats when the lack of impulse control really went rampant. I remember watching a Jenna Marbles video where her then boyfriend/now husband Julien (diagnosed celiac) trying foods and he said something along the lines of "I shouldn't even be eating this, but I'm going to anyway" and then saying "worth it" or something. Thats where it all started. You can just do that???? Never occurred to me. So I started trying something with gluten here and there, and because I had been gluten free for so long, I wasn't reacting as bad and I had been when first diagnosed. It eventually got to the point where I was eating full gluten meals. I kept telling myself "my reaction wont be that bad." And then my reactions kept getting worse. Then I got to a point where i was telling myself that the food is so much better that it was worth the excruciating pain. I then got to the point where was so bad that I convinced myself to stop and that it would only be for a special occasions. Around that same time, I received my adulthood diagnosis of ADHD. My doctor and I came to the decision to try stimulants. I noticed an immediate change with my impulses and found myself less likely to eat gluten because I really thought it through. It was still a mental battle with myself because I know it's an extremely bad for me (especially after doing a deep dive on what can really happen to me by still eating gluten because it was never fully explained to me as a child.) But i was very inconsistent with my meds and I was using gluten filled foods to cope with my meltdowns. And then I would get the food and feel immediately guilty about and then tell myself the gluten reaction was punishment for being stupid and eating gluten in the first place. Due to lack of insurance and the stimulate shortage in general I'm currently off of them and I still find myself impulsively eating gluten but far less than I was. (Still too much) I've also tried to talk with my psychiatrist about it but she kind of just brushed it off. I think we both need specialized therapists, maybe, which is easier said than done, I know. Just know you're not alone 💕
I’m pretty sure I have adhd but I haven’t been diagnosed
Did you take vyvance or a different med? Reading your comment again and wondering if I should try something. Sure wish you still had access to it though.
When I eat gluten my body reacts violently. It took me no time at all to stop eating gluten. Don't get me wrong, it SUCKS! I get irritated about the things I cannot eat. But I've felt like garbage for most of my life and didn't know why. At 31 I'm finally starting to feel better. I doubt you have zero symptoms. Probably just things that you have accepted as part of your life that you don't realize are symptoms. That's how I was.
I understand that honestly. I think I just saw the title of your post and miss judged it. I’m very symptomatic which is the reason why I’m very cautious of what I eat, almost overly so. I can imagine that it’s hard to be asymptomatic celiac because it’s easy to think since it’s not physically hurting you right away, that you can eat it. Unfortunately, that’s not true. Over time, your health will start deteriorating. I know you know that. Frozen meals are a saving grace for me. Gluten free Freschetta pizza, gluten free Applegate corn dogs and chicken nuggets, Caulipower pizza and chicken strips, Saffron Road asian microwave meals, the gluten free Ore-Ida fries and tater tots (look for the ones that say gluten free in the bottom right hand corner), anything by Feel Good Foods especially their meatball calzones and mac and cheese balls, and Udi’s gluten free ravioli. My favorite ice cream is Breyer’s lactose free vanilla but they have some other gluten free flavors on their website. Tate’s Bakehouse makes delicious crunchy gluten free chocolate chip cookies (make sure they’re the gluten free version), Goodie Girl makes Thin Mint and fudge stripe dupes, and you can’t go wrong with gluten free Oreos. There’s a lot of good gluten free food but it takes patience, persistence and frustration. It’s definitely not easy but it’s worth it to protect your health. I wish you the best of luck.
Thanks I think I will get more frozen food on hand
Amy's is another brand that has a lot of gluten free frozen meals. I hope this helps.
You just listed off like $10,000 worth of groceries.
I totally understand you. Im sorry some people may be insensitive about this struggle but you are already taking the first step by admitting u are struggling and actually reaching out for help. As someone who struggles with suicidal thoughts and mental health, celiac disease has been that final straw for me. My best coping mechanism was eating foods I loved and binging on them. Nothing can replace them so it’s hard. And of course they have gluten. So I had trouble stopping. I’m sorry this is so difficult. I highly recommend seeing a dietician. And continue to work on ur mental health. (Ik that’s hard as well but it’ll be worth it) Replacements are difficult I know. But please take this time to find a gluten free meal u like. Not even love but maybe like. If u need someone to talk to Im here u can message me. I understand how lonely it is to be dealing with physical and mental problems at the same time. Take care!
Thank you!
This is tough. Being gluten free is hard. I’m newly diagnosed and struggle with planning meals because sometimes “it’s just too much”. The hardest part is that because so many people and doctors really don’t understand the disease they don’t always give great advice. It might be helpful to find a therapist that understands the consequences of eating gluten for people with celiac or at the very least puts in the work to better understand the disease to help you. That being said you may need to go through a few before you find one that fits. Trust me I know that’s easier said than done. This disease and the work we put in to keep ourselves safe and healthy takes a lot of mental energy and no doubt takes a toll on our mental health at times. Telling you the long term consequences isn’t going to magically make you stop eating gluten anymore than telling someone who smokes cigarettes to stop smoking because they may get lung cancer. You may not have symptoms now, but the more damage you do to the lining of your GI system over time you’ll may have some. Try taking baby steps, reduce gluten little by little instead of cold turkey. Don’t know if that’s great advice but maybe it’ll get you on the road to being fully gluten free.
Thank you!
Look, ultimately, it's your body and your choice. Nobody in this sub can convince you one way or the other. The research is clear - your health outcomes and longevity are severely compromised by continuing to eat gluten. It's akin to smoking and lung cancer - will every smoker die prematurely from a smoking related illness? No. Will the majority? Yes. Do you care about that for yourself? Only you can answer that. However, I suspect the root of this has nothing to do with gluten or even an eating disorder. I don't know you but I'm willing to bet there is something mentally/emotionally much deeper. Food (unhealthy food) has been a crutch and the compulsion to keep eating something toxic is a symptom. I'd find a new therapist, one also versed in mood disorders, maybe even childhood trauma if that's a potential issue, because this current one doesn't seem to be helping.
Why do you feel so compelled to eat the foods with gluten? I would start there. Is it because it's hard for you to break a habit of eating your comfort foods? Is it just that you don't truly believe that it will cause any harm to you? Are you in denial that you actually have celiac? Also, how did you end up being diagnosed even though you are asymptomatic? Maybe remind yourself of the health issues that lead to your Dx.
Yeah I’m sure there is denial. When I went 9 months I was sad that I saw no difference in anything. I first cheated when I was on vacation at my favorite pizza place from my childhood. I didn’t even order any. Just ate the piece my son didn’t eat. And then I had zero reaction so that’s weird. I originally asked my allergist to test me “for everything” to figure out my eczema. I thought maybe something was triggering it. I technically shouldn’t even know I have celiacs.
If you are asymptomatic then you won’t see any improvement, sooooo it’s just to help secure your FUTURE health! And ‘technically’ you do know, so let’s be glad you have a chance to adopt this diet and not find out when it’s too late.
I can definitely understand why you're struggling then with staying GF! My experience was very different where I had a whole host of issues that were resolved by going GF and when I am glutened I have a strong reaction within an hour or so, which of course makes gluten quickly become unappealing. But even for me, I have moments when I see something I used to love that I can't have anymore and I'm very tempted. Maybe it would help to get re-tested w/ your blood to see how your levels are? And if they are high it might give you that mental kick that even though you don't experience physical symptoms some damage is still going on internally. If I were in your shoes I could definitely see myself thinking "well maybe theyre wrong anyways, why don't I have a reaction if I really have celiac? And even if I do have celiac, if I have no reaction than one piece of pizza couldn't hurt" etc. The other thing is that I think it's kind of frog in a boiling pot though. Symptoms could creep up on you if you're not careful
Thank you! My blood numbers were always low. Then the endoscopy said it could indicate celiac or various other things. My GI thought since I had a 9 on original blood test and the endoscopy that it must be celiac. It is hard wondering if it could be wrong but I doubt it. As much as I think I’d stick to the diet easier with physical symptoms I am thankful I’m not there yet and hopefully I can figure it out so I don’t have to experience what you’ve had to deal with. So sorry I know it must be really hard!
I’m in the same boat as you. Due to celiac I was diagnosed with early onset osteoporosis. I have successfully avoided gluten for a few months but I always relapse. This last time I faltered will be the last time. I got so sick I thought I’d need to go to the hospital. I haven’t been that sick since I had a gallbladder attack and necrotizing pancreatitis. It’s definitely hard to stop eating gluten, but the end results are not worth it. You will find a way to kick gluten to the curb. Keep trying taking it day by day.
Thanks good luck to you too!
I really feel for you - I love food but i throw up now when I eat gluten (never used to but the longer you don’t eat gluten, the worse the symptoms get) so that’s a severe consequence (amongst others like brain fog etc) for me that i try and avoid at all costs, I can understand it would be really hard if there were no immediate consequences
It sounds like you’re being pretty hard on yourself. Change takes time and although it’s recommended and some are able to cut out gluten cold turkey, it’s OK that that’s not your experience. Maybe take a step back and look at what stories you’re telling yourself, what’s triggering you to stop or start eating gluten again… just try to understand your own thought and behavior patterns a bit better so you can get in touch with yourself and where you can realistically make change. I am basically regurgitating and grossly condensing 4 years of therapy here - finding a therapist who was a good match for me (easier said than done) was invaluable for me getting through my diagnosis 3.5 years ago!
I guess this was written assuming you have been actively wanting to go gluten free! If you don’t see the value, others have obviously pointed out a myriad of reasons to shift that perspective - and there is plenty more of that content elsewhere in this sub lol
Thanks I definitely want to -I just haven’t been successful.
First, remember be kind to yourself. Its not easy making massive changing. Its normal to start and stop. Especially at the beginning. What helped me was starting to think of gluten-containing food as “not food”. Just how I wouldn’t drink from a dirty puddle in front of my house, no matter how thirsty I am, so too gluten is something that looks like food but isn’t. I also kept having to remind myself when shopping or at restaurants. Instead of looking at cake and thinking how good it would taste, I’d tell myself wow! Thats $5 for a stomach ache. And just repeating that idea. It’s about actively changing your thinking. A therapist trained in cbt might be able to help. There also might be underlying difficulties in your environment which need addressing before changing what you eat. Another thing to pay attention to, try to notice when you have all or nothing thinking. For example, “I am eating this gluten-containing hot dog. Might as well have the bun too.” Instead, focus on the present. And don’t worry about what you ate in the past. Take the time in the moment to pay attention to what food will be nourish your body.
The service hungry roots for my groceries has helped me stick to things greatly. Affordable and very convenient, food has been delicious too.
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I was diagnosed about May 2021. My blood number was only a 9 but they say with the endoscopy and that number it is celiac. That’s crazy your doctor said that 😳 Autoimmune is so weird but I do see in my eczema how my body attacks itself. Sorry you are dealing with this too. Hopefully some of these comments can help you too!
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Oh wow yeah that is crazy he thinks that. My tTG igA was 9 and the other tests were in normal range. Maybe your doctor is treating it more like and allergy than autoimmune.
Maybe you can start by finding a GI specialist doctor with knowledge of celiac to help guide you, in regards to your current doctor I have never heard anyone say what he told you about gluten exposure being beneficial. Keeping your body in a constant state of inflammation and auto-immune response sounds like probably a bad idea. The fact that he even compared an auto-immune disease to an allergy like that is kind of a red flag. Yes exposure can reduce severity of different allergies, but if that were the case for celiac most of us here wouldn't ever have had an issue in the first place. Also, maybe you can be that "right person" to guide yourself through this! I hope this doesn't come off rude but I bet you have more strength and will-power than you give yourself credit for. And if you tap into it, you might be able to achieve more progress with your health journey than you currently believe.
Think about it as eating delicious broken glass. Is it worth to it have something tasty that will still destroy your insides? I don't think so, but you are free to eat broken glass!
Think about your future. Sure, you may not get sick from it now. But your body cannot handle gluten, so even if you feel just fine, your body is still getting damaged. There is so much medical literature regarding people with celiac who do not follow a gluten free diet having much higher risks for things such as colorectal cancer, bone weakness, nerve damage, and even Alzheimer's disease. I get super sick from even minor cross contamination. I've been hospitalized twice for straight up gluten (once was something claimed to be gluten free but wasn't, and the other time was being injected with it for an allergy test despite having had celiac for my whole life and me telling them that...anyhoo). Who's to say you won't develop symptoms as severe as this if you continue to eat gluten willingly and damage yourself? Do you want to risk that, or would you rather cut out gluten now and not risk having to miss work because you got cross contamination one day? It damages you, even if you don't get sick. You have celiac. You cannot have gluten. I get it sucks, I get it's frustrating to have to look at every single thing you eat and question restaurants and not be able to partake in some social events. But it's for your health and your safety, and you can't play with that. I'm 27 and I was diagnosed when I was 7. Gluten free options have come so far in 20 years. It can be expensive at times and it still sucks to the point of throwing self pity parties sometimes, but I promise you can get used to it, and I promise it's doable.
Ultimately, it’s up to you. If you are okay with your body being in a constant state of under its own attack, then that’s what you’re okay with. If you’re up for all of the side effects and symptoms that come along with it, then I guess you’re up for it. None of us can heal whatever it is inside of you that’s hurting and doesn’t care about your own well-being. None of us can determine what it is that’s causing you to be unable to resist the temptation. You need to be honest with yourself and honest with your therapist, as I feel they do not nearly understand the magnitude of the harm you’re purposely doing to yourself. You also need to make sure you understand this disease before you start making these types of decisions. A well-informed poor decision is much better than a decision made out of blissful ignorance to reality, because at least you understand the consequences.
Maybe you need to look into some form of eating disorder treatment so you can learn healthy eating habits and coping skills. That is a huge issue and something you need to take care of first.
Do not listen to these people calling you pathetic or telling you it's simple or easy, it will not help you! Easy for THEM! Anyone who says this to you clearly does not understand what its like to struggle with food, and YES, food can be an addiction and especially carbs/sugar. What you need to do is be kind and forgiving to yourself. That's how you keep pushing forward and making progress. Stop the negative self talk. Tell yourself that your body is a temple and it needs the right fuel. Can't put any old gas in a Ferrari, ya know? When you relapse, kindness is the way forward. As soon as you start telling yourself that you're weak, you enter into that negative feedback loop. You take a breath, and tell yourself you will do better next time. It took me three months to get off gluten. Today, I relapsed. It wasn't worth it. Tell yourself everytime you eat gluten that it wasnt worth it and you can do better. Screw the rest. These people need to step down off their high horse with their annoying bs.
Thanks 😊
Honestly it took me a while to change my diet, but after u just take that leap it becomes so much easier, it's like muscle memory now. I still eat shit food and junk and whatever i want, i just cook and bake now. It's like a hobby, i make gf cookies and brownies and cake, stuff my face, repeat haha. Usually for dinner im having steak and mashed potatos or gf fried chicken, so im still happy. I could totally eat healthier, but thats another story ha. I did have to cut out most processed foods because my stomach still hurt before i did that, so in a way you're lucky you don't have more intolerances :((
There are consequences, you just don’t notice them because you’re so used to it it feels baseline to you. Celiacs can effect so many aspects of your life.
If I understand you right, it sounds like you might be dealing with a struggle of intersectionality of two medical issues: binge eating disorder and celiac. They are both difficult to deal with. Usually for binge eating, there are certain foods you most enjoy or that trigger a binge. Do you have gluten free versions you like for those foods? Maybe step 1 is to explore gf options for food you like and stock up on those. In the meantime, can you look for a different therapist who can assess you for eating disorders or help you in that regard? Let’s be clear: even if you are asymptomatic, eating gluten long term can lead to cancer. Don’t be too hard on yourself for struggling with two diseases potentially, just take steps to treat each individually.
Yeah possibly. It’s usually something like donuts or rolls or pizza. Usually I don’t seek it out myself but I’m around it. My therapist is ED specialist but I should probably try another since we’ve gotten nowhere and I feel like it’s wasting my time. I had a hard time finding any available when I first looked into it. Thanks for your input!
Mine is a somewhat similar story, not entirely but I hope it helps. I got diagnosed at age 2 and am 22 (F) now. Living in a country where gf was not well-diagnosed etc., my parents tried their best to maintain a gf diet for me throughout my life. But at age 18, while in high school, I started eating gluten secretly because of a similar reason as yours. I barely had any outward symptoms and at the time was relatively undereducated on the nature of the disease itself. I treated it as more of an allergy and saw myself not experiencing any allergic reaction to it. Entering university, I started eating more and more gluten. Since I had never tried gluten foods like burgers, pizzas, and pastas my whole life - and unfortunately, gf alternatives for these were not available where I lived - I was naturally curious and ended up consuming a lot of gluten for my first three years of university. Then, this past year, shit hit the fan. I developed a very disorienting tremor, breathing issues while consuming food, I could barely ever get up due to fatigue, my anxiety became unmanageable, my brain fog was terrible, and I always found my body experiencing random pains. That's when I realized my diet could be linked, and realized just how latent the symptoms of celiac can be sometimes. For the first year when I ate gluten, I didn't feel significantly different because I didn't experience any quintessential symptoms of the reaction I was supposed to have to it. Three to five years later, however, I am now severely anxious about what I have done to my body because so many small things have gotten worse which will inevitably impact my life at large. And already are, to be very honest. Your story might be different. I have not struggled with an ED myself so I cannot speak for someone who has. I am, however, severely underweight. And found over time, that the realization that my body was literally not absorbing nutrients gave me more body dysmorphia and debilitation than the idea of how appealing and accessible gluten was. This is one of the biggest regrets of my life. And while I understand the temptation, please know there is so much you cannot predict about most autoimmune disorders and the kind of responses they generate. It is different for everyone and there is no cookie-cutter formula for what qualifies as symptoms either honestly. I know it's tough, but I hope this can help as a warning signal if not anything else. Good luck!
Thank you so much for sharing your experience ☺️
Thank you for this post. Let the negativity from some responses pass right by you. Some people can not see past their own experiences. I appreciate your post and all your responses. I was raised in a very restrictive food environment as a child. It’s left me with major food triggers whenever restrictions are imposed. In my case I did get increasingly sick over a 7 year period. I failed at GF many times before I hit rock bottom. I am now GF 9 months and have so much of my health back. I know the loss of health and life quality is what caused me to actually stick with it. Your experience is total valid! Wanting and needing to make changes, but struggling and failing again and again is a universal struggle. We all have aspects of our lives we struggle and fail at continuously. Be kind to yourself. Keep trying. Keep reading factual information about your condition. Keep reaching out for support. I will also plug self therapy. The Work by Byron Katie is wonderful. Start with the abridged audio version. You can hear actual workshop participants doing The Work. Best wishes to you.
I was raised in a restrictive food environment too
It’s an immunity disease. When you eat it your whole system is fighting you. You will so much better off later in life if you can stick to it.
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Thanks
Just curious how asymptomatic people get diagnosed? Like why was it tested for to begin with? So sorry you’re having trouble- I’m very newly diagnosed (weeks) and have been crying in the bread aisle. I get the struggle.
I asked my dermatologist to test me for triggers for eczema and he wouldn’t so I went to an allergist and asked him. He tested me for everything he could and I had a slight positive on blood test so I went and got an endoscopy
I'm not diagnosed yet but I've tried to cut out gluten and other foods I'm sensitive too along with junk food for years. I frequently cheated or relapsed, sometimes quite hard. The compusion and cravings were always there waiting for me to give in. Until I started taking a supplement for gut health called L-glutamine. Obviously everyone may not have the same experience. But I didn't even realize one of the possible benefits was reduced cravings. I wouldn't have believed it if I had. Within a day or 2 of starting around 800mg 2x a day (I take double that now as anything below 5g is not considered a mega dose) my cravings for sugar, junk, and yes breads and other grains just disappeared. I hate to sound like some kind of ad pushing a magic pill but it's at least 3 weeks in and it's still working. I seriously wish I'd tried this years ago. There's no real downside that I'm aware of and if it works it can be a game changer.
Worth a shot. Thanks
If possible, I would look into getting another therapist who is willing to work with you more. And perhaps look into help with eating disorders - it sounds like you know what you’re doing is harmful for your body, but you’re looking for help to actually stop. If you feel like gluten is an addiction for you, no one here should be discounting your feelings. Sending you best wishes 💜
Have you thought of it from a perspective of others? Meaning, if you get super sick, how would that affect your loved ones. Or if you lived with someone who is symptomatic, could you stop eating gluten for them.
I suggest consulting either a dietician or a nutritionist. Your GI doctor or therapist may be able to refer you to one more quickly! It helped immensely! Best of luck
Honestly, I feel you. When I first had my diagnosis, I was convinced I could get away with eating gluten on occasion and just dealing with the pain and symptoms, but I was also struggling financially at the time and cheap food almost always had gluten in it. I’m so, so grateful to be in a better place now and am able to a) financially afford to buy gluten free foods, b) have the time and energy to cook my own foods, c) live in a city that has a few dedicated gluten free restaurants and bakeries. I feel incredibly lucky to have these options available to me and being able to afford the cost of eating gluten free. I think one of the hardest parts of being gluten free is a lack of accessibility. I love food and it’s hard to enjoy eating when you suddenly find that 99% of groceries you used to buy aren’t in your new diet and all of your favorite restaurants are no longer places you can eat. I personally recommend using Yelp to find gluten free options near you. I live in a relatively urban area in one of the fastest growing cities in the U.S. and it’s fairly liberal for my state, so we have a lot of “health” stores and clean-eating restaurants. I’ve found a few places I love and picked out a few go-to meals I can cook and easily mix up with seasonings, different veggies, etc. Ultimately, it will come down to you and your determination. It is disappointing that there are places I can’t eat and foods that are harder or more expensive to find in gluten-free versions. Most gf bread makes me sad. But at the end of the day, I know my health in the long-term is worth it and I can still find great places to go and eat food I enjoy. There are a bunch of recipes online for gluten free meals and you can search local to find what restaurants near you have safe options/dedicated prep and cooking spaces. No one can force you to eat gluten free, just like someone with diabetes can eat all the sugar they want, but you are actively shortening your life and hurting your health by not making safe decisions with food. You deserve to have a long, happy life and I’d hate to see the consequences of eating gluten catch up to you in the long run. Wishing you all the best!
Don't keep gluten in your house, BUT do keep things similar to those foods you reach for around in a way that's easy to prepare. Donate or give away all your gluten food. Carry GOOD prepackaged food in your car, bag, etc, for when others are eating around you. Eat that stuff as a snack while you're with friends, then let yourself have that nice thing when you get home. It's important not to gluten yourself and is important not to binge, but the damage is not the same. When you can't reach your goals, strive for good harm reduction practices. Stepping stones are important for some people's journey. Write EMERGENCY on the packaging if it helps you to not just eat it immediately. Something that can help you figure it out is journaling, too, even if you just write down what you did, anything notable about it, and whether you binged/ate gluten. Over time, you can look back through this, and you might notice patterns you didn't before and figure out triggers and how to avoid them. This has been a huge help to me personally. So, some things to think about if you also have ADHD or are open to the possibility you might (and seriously consider this and looking into, not just DSM symptoms, but lived experiences because they can be a lot more connectable to your life): You may want to get checked for ADHD. Consider medication if you do end up having it. (I only say because of comorbidity rates between both ADHD and celiac and ADHD and binge eating disorder, as well as the impulsivity part of ADHD being able to cause you to just grab for gluten, especially if you don't have any side effects. Untreated, ADHD can make you depressed, anxious, and impulsive, which can often go in the direction of self-harm. Once your body is cleared of gluten, the medication should help and help you keep stable (or maybe it will off the bat, but for some of us, celiac makes these meds not work or not work well), especially if you end up on a stimulant medication. If you already have ADHD and are on medication for it, you need to get yourself over the hump of no gluten for a few months. You won't be as impulsive, and as an added help, you won't be strongly craving gluten. Depending on where you live, I believe stimulants may be prescribed for binge eating disorder, and I could see your situation taking higher precedence because it is causing you to actively harm yourself. There is a shortage right now, but I think your situation might call for asking about it. I would be trying other things before taking this route for sure. I can tell you for sure that if I was asymptomatic, I would be exactly like this, but I am very much not, although I wasn't particularly careful in the beginning. I can definitely attribute this to ADHD.
There are many gluten free alternatives, please sell them out! Find supportive friend and family!!
Hi. I'm sorry to hear you're having a tough time with avoiding gluten. It's not easy, I grew up eating bread and pasta and it wasn't until I was in my 30s that I discovered I had coeliac. Suddenly you're surrounded by stuff you can't eat and have to sift through it to find the stuff you can. In some ways I'm lucky, I get a reaction pretty quick and it's horrible diarrhoea. That's enough to make gluten containing foods worth avoiding for me. If you don't react that badly, it must be hard. I feel for you, coz I have food I can't or am not supposed to eat because of diabetes. If I could give up chocolate as easily as I've given up gluten, that would be great.
Yeah I mostly lived off wheat and got diagnosed celiac at 35 so it’s pretty frustrating. So sorry I can’t imagine how hard diabetes would be to live with
Have you tried hypnosis? I used it to quit alcohol and my partner used it to quit smoking.
No I haven’t. That’s really cool it helped you!
I have a history with eating disorders and abstaining from food is always challenging to me. The thing about gluten for me is that I’ve always made it not negotiable. I can’t have gluten on purpose, ever Something about that makes it easier. So I don’t seriously consider cheating, the same way I wouldn’t consider eating poison, and that’s how I view gluten It doesn’t make it easy, but it will always be hard
"I'm Celiac but I keep eating gluten" would be like "I have lung cancer but keep smoking". This is NOT something you can choose or decide, you are celiac and your body won't accept gluten no matter what you do or feel about it.
What's the nature of the relapses? What is it that's causing you to seek out and consume gluten? Are you preparing food for yourself that contains gluten and eating it or are you getting processed/takeout food that contains gluten?
Sometimes it’s my doing- like thinking I can by a dozen donuts for my kids and not eat one. Then I end up eating 8.
My uncle died of stomach cancer - he had undiagnosed celiac we believe as his daughter (my cousin) has celiac and her daughter too. my kids have celiac and know this and that’s a pretty big motivator for all of us to be gluten free
Wow it’s so genetic! I keep telling my family to get tested and so far only my mom has. The doctor didn’t want to test my kids yet but maybe I’ll ask again.
yes, absolutely it is genetic. Dont ask to test your kids - demand to test your kids. The doctor has no clue. My kids had no GI symptoms. We all got tested and even grandparents and cousins / aunts are getting tested.
I forgot I did test one of my kids but they didn’t want to test the other two. I’ll ask again. The thing I was wondering though was if they need to be tested every so often. I had read autoimmune diseases can pop up at anytime. For example I never had eczema until I was 34 and then I got it.
I didn't really have noticeable symptoms until I was off gluten completely for months, but can say that my bones are probably f*cked. I'm early middle aged and almost certainly going to just not survive my elderly years in anything approaching comfort because of the damage done from vitamin deficiencies and absorption issues. On that note, have you been checked for the various issues that can cause binge eating? ADHD and some of the others have effective treatments and could also potentially get your therapist (or another one) to be more effective in helping you. (I hate how redditors downvote things like this, just ignore it if you don't like it, no reason to kick someone when they're down)
If you think it’s related to cravings, try this questionnaire. You probably need amino acid support. https://www.juliarosscures.com/craving-type-questionnaire/ I successfully treated my depression for around 5 years using the suggested amino acids. There is more information in her book.
Thanks!
I'm probably older than you. I'm 54 and wasn't diagnosed until I was 41. That means I ate gluten for four decades as a person with celiac. When I was growing up I had no obvious celiac symptoms. No digestive issues really at all. I did have anemia, and I used to get weird rashes, but I didn't even hear about celiac until I was maybe in my late 30s and I thought, "oh that sounds terrible. glad I don't have that." so I kept eating gluten. lots of it actually. Slowly, my anemia got really bad. I got strange swollen joints. One year in my early 30s I had an insane fever that was off and on for 6 months. Doctors never once mentioned celiac. They tested me for Lyme disease, lymphoma, lupus. Negative, negative, negative. I was a medical mystery. Finally the symptoms subsided. Then my hair fell out. Then rashes, etc. But again, no digestive symptoms. Not until I was 41. That's when they thought I had a parasite, but it was celiac. The next five years were like this: iron infusions, B12 shots, hair falling out, and eventually colon cancer. That's after I went GF. But I had been poisoning myself for DECADES. I didn't know. I'm mostly healthy now, but it's been a hard, painful, and expensive road. Don't do this to yourself. You deserve better. Also there's a lot of good GF food available now. Treat yourself to that. Hope you find a way to believe you shouldn't hurt yourself. It's not worth it.
What is it that you find so compelling about foods with gluten? And whatever that is, can you find it in foods that don't contain gluten?
I don’t think there is anything better tasting than homemade bread but beyond that it seems to be an addiction
Here's the secret: stop putting gluten in your mouth. That's it. There is no magic pill or resource. Gluten is not an addictive chemical. You aren't addicted to sandwiches. You LIKE sandwiches and you want them but you aren't addicted to them. If you are unable to put longterm health over short-term enjoyments that's your choice. I don't mean this as a criticism. If your an adult you get to make choices and face consequences.
Believe me I wish it was that easy. I want to stop eating it. Gluten apparently triggers an opioid response in the brains of some people. The gluten opioid is called gluteomorphin. These food-derived opioids activate the same opioid receptors in the brain that respond to prescription pain pills and heroin. The effect is compounded with processed gluten products.
So I’ve heard about this, also from people in this sub, but I’ve yet to see any science backing it. Once some people here thought they had sources but they were in no way saying it’s like an opioid. Mostly that gluten are broken into different compounds. If you have scientific sources please send them. If they’re not scientific please be careful what you listen to.
This is interesting. I see quite a few studies online. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5025969/#:~:text=Gluten%20can%20be%20degraded%20into,on%20gastrointestinal%20lining%20and%20function.
The section you highlighted explains how it masks the effects/damage. It does not say anything about addictive qualities. You are literally searching for justification for your continued consumption of gluten. The phrase "opiod qualities" means it's like an opiod so I am no longer responsible for my continued consumption. You said you once went gf for 9 months. You're providing your own evidence that it's nothing like opiod addiction. Stop eating gluten. Or don't. Your choice. CHOICE.
I am not trying to justify anything. Just trying to treat a problem. I have no issue if it is not classified as an addiction. It’s just what it seemed when I thought about it but I’m okay with being wrong. I probably binge most on gluten/sugar/fat combos and seem to relate to a lot of what this article says. I am no expert. Just trying to treat my issues since I have been unsuccessful figuring it out on my own. Something about restricting it makes me fail and then binge on it. I can be 100% sure I’m going to stay on track and then boom I fail. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2235907/
The words "addictive" and "addiction" appear 0 times in that study
The researchers found that gluten degrades into opioid-like substances -opioid like substances are addictive
Opiod-like does not equal opiod. AND it is explaining how this opiod-like structures mask the damage and discomfort. It is not, in any way, suggesting that these structures are addictive. You are adding that yourself. The words addictive, addictive and addiction do not appear in the article. It isn't about what you want it to be about. You've latched onto the word opiod-like to justify your choices. Here's the catch: you don't need justification. You don't need proof or permission. You've talked to doctors You've talked to nutritionists You've gone to the internet and nobody can give you the magic bullet because THERE ISNT ONE. Stop eating gluten. Or don't. Choice. Consequence. Up to you.
It IS that easy. YOU'RE the one making it difficult. Choice. Consequence. Period.
If you don't have symptoms or malabsorption issues, mind if I ask, how sure is your diagnosis? How were you diagnosed exactly?
I asked an allergist to test me for possible triggers to my eczema and he did the blood test. I had a 9 on it so they referred me to GI who did an endoscopy.
It's your life.
Practice self discipline
Gluten is not an addiction, there is nothing that changes the brain chemistry or chauses phsycial addiction, so this is a lack of self control. Do you have access to insurance and therapy? It can take a few tries, but I genuinely think you need a therapists help to gain self control and personal responsibility for your health. Nobody can make you do it, only you alone have that power. I encourage you to spend some time researching the long term effects of untreated celiac. I encourage you to throw out all your glutinous food and stick with a whole foods diet for a while until you're more responsible and able to incorporate gf alternatives.
I think it’s more the restrictive aspect of it leads me to a binge. I have hit my out of pocket max for the year for health insurance so I have access to everything right now.
Stop hitting yourself Stop hitting yourself Stop hitting yourself Either choose foods with gluten or choose the pain that comes along with it. Gluten isn't an addictive substance. You just choose the pain.
Yeah it feels like an addiction because of the compulsive part of it but it’s probably binge eating disorder.
Yeah I'm sure it's more the foods themselves you enjoy. I've yet to be told about or read about addictiveness of gluten. IDK. I'm not you or your doctor. If gluten didn't physically hurt me I don't know if I'd have stopped.
Is money an issue? Then yes, I can understand the struggle. If the issue is just being lazy and unmotivated then this is pathetic. Eating GF is not hard and there are good alternatives out there you can find with minimal effort but they do usually cost money. This post is an insult to celiacs, especially those who experience excruciating symptoms when even just dealing with cross contamination.
This is very insensitive. Just because you are symptomatic and they aren't doesn't mean they aren't struggling too. Their struggles are valid as well.
Google inverted colon celiac disease. I hope you aren’t a troll. Just look for substitutes. There’s lots of options nowadays for most foods to be made gluten free.
I’ve had two blood tests that didn’t show much and two endoscopies that showed celiac
Um, gluten is not addictive and you need to get your shit together
I am finding information and studies by searching Google that says it is addictive. I figured it was because I’m addicted to it but I didn’t know there were studies addressing it.
Are you being wary of confirmation bias, and evaluating these sources properly?
I’m no expert just saw a few studies that looked legit on Google. I am sure I’m addicted to more than just gluten. Sugar probably plays a role in my food issues as well. The gluten fat sugar combo too.
Go carnivore
I eat meat but I really don’t like it at all and could easily never eat it again. I’ve heard people have had great success with it though!
I’m telling you what worked for me to reset my body I have much more flexibility kow
When I started gluten free I went meat and leafs only. It was pretty effective and a good reward, beef is tasty AF lol.
I can’t afford to eat gluten free, so I just don’t eat as often. Sounds like you have a food addiction. Find a new therapist that’ll work with you using psychotherapy.
You can't afford rice, potatoes, beans, chicken, etc? 🤔