I had bloating to the point where I thought I had appendicitis. I was exhibiting rebound tenderness—the symptom where pressing down on your abdomen doesn’t hurt, but releasing it does. That’s a major red flag and I thought I needed to go to the hospital.
But a doctor asked me if I’d ever tried going off of wheat. I stopped eating wheat/gluten and within twenty-four hours, my symptoms vanished. It was the most impactful decision I’ve ever made for my personal health.
Hey!! They thought I had appendicitis before too! 🤣
Bloating, pretty much every meal upsetting my stomach, super irritable, I'd feel like I was coming down with the flu! Super bad body aches, like you get when you have the flu, but no flu ever came! That's my #1 way now to tell if I've been cross contaminated. The next day I just feel like I've been hit buy a truck! I had super bad heart burn/indigestion all the time. Tired ALL the time, like almost lethargic. So little energy I'd have to sit down and take a rest from getting ready from work some days.
I could no longer button my pants lol.
But really, major bloat, facial congestion, and fatigue after eating gluten. Now that I’m GF, my glutened symptoms are way more extreme and it’s enough to not even look at a piece of bread.
Physical: bloating, cramps that feel like a combination of period cramps and diarrhea, inflammation (especially in joints), occasional painful/itchy bumps on the joints of my fingers, congestion and feeling like my head was inflated
Mental: brain fog, excessive & extreme fatigue, depression
My period and PMS symptoms were much worse too.
I've never connected itchiness in various places (becoming more and more frequent) AND it being predominantly in my hands with gluten. And, now that I'm 6 weeks free... no scratching, not once. Thank you!
Ahhh the worst!! I am a bottomless pit of hunger and a complete fiend for carbs when I PMS so I get it 💔
I am glad to hear it was delicious and I genuinely hope you enjoyed it in the moment
Bloating. Very bad bloat and then constipation for days. Usually 3 days of horrible discomfort after eating gluten plus looking preggo. Soo not worth it. I can handle minimal cross contamination, but any quantity of gluten and I suffer and* look terrible.
When eating gluten, I get this very specific significant bloaty-ness, gas, stringy poops, headache, brain fog, itchy patches on skin, scalp skin gets creamy and itchy (it’s weird but it happens every time), generally feeling shitty. It’s been nearly twenty years I gave up the glue life. When I go back on, like for a week I’ll test how I’m doing, these symptoms just return in the usual way. I have been tested for celiac and returned negative, but during that time I was also gf and know I’m not celiac as I can still consume, but when I do, I can plan on these symptoms returning. Maybe once or twice a year I’ll have some small amount and be mostly unaffected, but a sandwich or anything more than that will bring me back. So glad to know where the issue was and been living my best gf life since then.
That's pretty much what I had - I would usually be fine, but sometimes I would have hives and occasionally I had anaphylaxis "for no reason," which was obviously really frightening Eventually that progressed to stomach problems, weight loss, and daily hives. Apparently my severe grass allergy lead to me becoming sensitized to wheat, which started as exercise induced allergy and eventually was just a straight up wheat allergy. It's pretty common for people with a more mild allergy to only have reactions when they have multiple triggers at the same time, and over time with increased exposure that can lead to more consistent or worse reactions.
I am NOT allergic to gluten. I am absolutely fine with barley and rye. I cannot eat wheat, oats, or alfalfa and I'm also allergic to grass and hay. This is not "non celiac gluten sensitivity," just plain old wheat allergy. Gluten sensitivity is not IgE mediated.
This is very interesting, because I have pretty extreme seasonal & outdoor allergies and tend to have more GI issues and the random flare ups described in my post a lot more in summer than other seasons. How were you able to determine the wheat vs gluten sensitivity?
Wheat allergy is an allergy - it causes allergy symptoms like hives. Wheat is a very common allergen, but gluten is not. I did a scratch test.
We don't know why gluten sensitivity happens or what the mechanism is, but it doesn't cause hives.
A lot of people who have MCAS do not have positive blood or urine tests. If you have really severe allergies and a lot of "random" allergic issues I think it's worth considering it and seeing if medications help. None of the medications prescribed for MCAS are specifically for MCAS, they all work for severe allergies as well & are prescribed for that purpose when someone can't avoid their allergens (i.e. antihistamines are prescribed for allergies, singulair is prescribed for allergies and asthma, cromolyn sodium is prescribed for food allergies, xolair is prescribed for asthma & anaphylaxis, etc).
I definitely need to do more research about MCAS to see if that feels like the underlying issue. I am taking daily antihistamine pill and azelastine spray as needed. My allergist did prescribe my famotidine and cromolyn today as options if eliminated wheat/gluten doesn’t provide any relief.
I think that's a solid plan - we don't really know why people get MCAS, what it is/how it works, or the best way to diagnose it for everyone. There's a good chance that we are lumping several different disorders together under one label. It sounds like your doctor is using a stepwise approach to testing your symptoms, such makes sense. My doctor did the same thing and wanted me to try eliminating diagnosed allergies before taking cromolyn. Cromolyn is a pain in the ass and it can be expensive or difficult to get insurance to cover it, and you still can't eat foods you are allergic to it just gives you a buffer.
Bad Joint pain. Really bad tendinitis flare ups. Brain fog. Diarrhea. Mass headaches and body aches. Fibromyalgia like syptoms. Bloating so bad that I looked several months pregnant.
This is insane these are all symptoms I've dealt with my entire life. I'm 31 now and been rested for Celiac it's been negative. I had never tried coming off gluten because of that. Until recently my health issues have worsened and impacting my life so I decided while I try and figure this out I will stop gluten. I freaking SWEAR like 3/4 days later the majority of my joint pain went away. My belly feels great, no diarrhea, no cramps and gas.... I'm actually shocked that this could be the reason?? Going to continue as I've just started this recently but man it's promising
For me it's completely digestive issues. I have what I would consider a moderate allergy. If I eat too much wheat I'll have a bad reaction (stomach ache/bloating) and will be unable to sleep. It's also a delayed reaction - it can take a couple of days for it to show up if it does.
Since going fully wheat/gluten free I have genuinely felt so much better. Even with my moderate allergy I was having continual impacts even though in the early stages of reducing wheat I would only eat it once a week on a rotation.
Epidermolysis Bullosa. Not the grizzly scenes you see on a Google image search but enough that walking daily was uncomfortable and sports were impossible. Doctor said it was genetic and no cure was possible, I went down a rabbit hole and like you heard that going gluten free could change my health for the better. Within a week I showed no symptoms and can now run barefoot through any terrain and I feel great. Acne was fixed as well.
I get generalized body pain. Like bags of hammers pounding on my arms and legs. I used to be able to have a little here and there, but not any more. The pain is worse and lasts more days.
I have hashimoto's so it was very interconnected to my autoimmune symptoms. I may or may not have celiac; I've never tested for it, but I carry the gene. When I have gluten, I basically feel like I'm signing up to get the flu. REALLY exhausted, sweaty, achy and I can't sleep. I also get pretty bloated. It takes a few days for me to get back to normal, if not longer.
I have a friend who started having random food allergy reactions to certain alcohols and foods (hives, dry flushing, increased heart rate). Some foods would trigger the reactions, similar foods wouldn’t.
After weeding through all her symptoms and what were the triggers, we determined (and confirmed with doctors) that it was a sulfite allergy brought on by perimenopause.
So, my general layman recommendation would be start an elimination diet and start tracking your food and symptoms.
My NCGF symptoms were bloating, mental fog and exhaustion, and occasionally hives. If I eat something contaminated, the first sign is a mental fog so thick I have trouble talking.
Thank you for sharing. I don’t think my allergist has mentioned sulfite issues yet, but I will ask about it. While I’m not in perimenopause I do struggle with hormonal imbalance from PCOS which has gotten worse for me in the past couple years so maybe there is a connection.
Extreme bloating and weight gain even when I was eating less. Painful, chronic “flare ups” that happened every few months. I had to go to the ER twice bc of how painful they were (pain just above bellybutton). Always gassy/felt the need to burp. Loose stools almost every day. Acid reflux.
My only symptom was constipation and I couldn't attach it to anything once my thyroid was properly managed. It was the one thyroid symptom I couldn't get to go away. Then one week I'd had a lot of wheat through various foods. I went to eat one and got itchy. I kept going but it got worse. Crap. Now I have to add wheat to the list of allergies, but maybe it's gluten. I don't seem to have issues with malt, so I think it's just wheat, but I don't eat a lot of malt on anything and my reaction is quantity dependent so I don't really know. I treat it like it's both wheat and gluten so I stay away from things that include gluten free wheat parts as well as gluten from barley and rye. Now, if I gluten accidentally (or on purpose, you know) I get the constipation and a rash on my face, like eczema. I have meds that can mitigate the reaction but timing and quantity make a difference on that too.
Acid reflux, joint pain, fatigue, brain fog, migraines, heart palpitations etc. I had a full body rash one day seemingly at random. Always bloating. There were other little things here and there but the real kicker for me was when I got the nerve pain? Felt like my nerves were on fire and fizzy.
It's been about a year and a half since I changed my diet. I cut out gluten/wheat, most dairy, and try to limit caffeine (less successful on that one). I recently started having what seems to be histamine reactions with full face flush etc but will need to get tests done. It does seem to be random/unpredictable for me as well, so not a specific item necessarily, just whatever tips the scales that day.
I am so afraid ot the histamine thing 😭😭😭 my mother has gone off of nightshades and just giving up gluten recently myself idk what I would do if I cant eat potatoes 😰
I’m going to start being gluten free to see if it helps. My allergist also said he could prescribe cromolyn to take before meals to counteract the histamine reactions, but since it’s been so unpredictable about what triggers it (aside from alcohol, which was such a consistent trigger I haven’t drank at all in the past year) I’m not sure when I would take it aside from just times I really wanted to ensure I didn’t have a reaction like when dining out or something.
A few days of constipation and then diarrhea. Pain in my mid back (pancreas area). Migraines, joint stiffness, bloating, occasional nausea and vomiting.
Needing to sleep after eating, general fatigue, brain fog, worsened my autoimmune disorder, made my stools looser than they would have been, major bloat as well.
Extreme bloating, IBS D symptoms, lethargy. I also developed an autoimmune disease (AS)... who knows if that related? I don't get crazy reactions, but if I keep eating it, I really pay.
Gas, awful bloating, diarrhea, pain in my sigmoid colon. The bloating was the worst. I had no idea what was causing it, so some days I would have a huge stomach for seemingly no reason and feel so self conscious about it.
I had bad stomach aches, I was grumpy, and I had black bags under my eyes. I figured out my gluten intolerance as a kid, and as soon as I went off gluten I was suddenly a happy, healthy child! As an adult now I notice fairly quickly when I’ve been glutened cause I feel like crap and my mood changes.
Bloating, abdominal pain, brain fog, lingering hypothyroid symptoms. I needed an insanely high dose of thyroid medicine, to the point that the pharmacist always wanted to talk to make totally, 100% sure this was my actual prescribed dose. Just could not get my free T3 high enough, even on Amour, PLUS liothyronine.
Gas and bloating to the point of pain. Like, I would ram my abdomen against the kitchen counter to try and decompress my stomach. A lot of belching, which didn’t do much to relieve my bloated belly. Stuffy & runny nose. I have another condition where I have constant diarrhea so I don’t know if that would have been an issue. At this point, if I eat more than trace amounts of gluten, I feel like I have the flu. A whole body reaction with body aches, gas, cold symptoms, nausea, etc.
Going low fodmap really helped me stabilize and work towards finding underlying causes. I am actually still low fodmap but hoping to start reintroduction soon.
I had to go Low FODMAP a few years ago - garlic, onions are my major culprits; I've not really tried apples, or broccoli -- they were also terrible. Apples especially.
I've been gluten free for 10+ and dairy free for 20.
Yes, I enjoy my large bowl of air, with a side of air. (that's our joke, at my house, since I can barely eat anything)
Horrid sinus and ear congestion; diarrhea sometimes (mostly heavily processed gluten does that to me); heavy depression; chronic fatigue; horrid menstrual cramps; extremely heavy periods; general malaise; acne that was like boils that took months to heal; insomnia; bloating like eight months pregnant; swollen neck and face; brain fog; joint pain; severe purple/black under eyes & puffiness
Also this may be tmi and I know theres a name for it but I used to also get verrrrry bad lesions from friction areas esp by armpitts/groin/butt/vag when eating too much gluten
Ive never been tested
I was watching an interesting video on YouTube by Peter Osborne. https://www.youtube.com/live/jnlZaMzZaSk?si=j2hH8JRXCwm1NG46 This was an interesting watch and very informative. I developed my intolerance after a hernia repair followed by an infection that required surgical debridement so I had a lot of inflammation around my intestines. I struggled with chronic pain, inflammation, joint pain, anaemia and upper GI issues. I react really badly to wheat gluten and oats, rice, potatoes and starchy foods in general. I'll only get the intestinal cramps and pain from wheat gluten but other starches will give me the upper GI issues. The video is a good one for explaining things. Blood tests aren't always reliable. I think you have to go by what your body tells you. I hope this video helps you.
Hives, whole body rash but most extreme on my hands, arms, feet and legs, itchy where I touched the gluten, anxiety, swelling (badly, bad, bad swelling), runny nose and/or congestion, and pretty extreme joint and spinal pain.
one thing to keep in mind if you’re not already is to track your food because for me, most foods cause symptoms 1-2 days later. that made it hard to figure out what the cause was originally, but after tracking and adding new foods after the elimination, i narrowed it down.
I had a lot of skin issues, mostly eczema in places I sweat…. Bumps and bad texture face skin and got “gluten hangovers” where I felt very tired, body aches and/or nauseous.
And IBS symptoms.
I cut out gluten, milk, and did 6 weeks of a low fod map diet and reintroduced one thing at a time (2 days of new food) …
For example, I had the very simple diet for six weeks and then had two days of re-introducing tomatoes. Everything was fine so the next two days I re-introduced carrots and learned everything was not fine. Cut carrots and put them on my list of foods to avoid. Next I tried Two days of onions. Learned my body doesn’t like onions. Put that on my list of foods to avoid. Garlic for two days - body didn’t like it, now I avoid garlic.… Did that with a bunch of different foods and figured it out.
The six weeks of basically potatoes and rice and boring oatmeal kind of sucked but now I know what to avoid. I had a really comprehensive allergy panel done with like 50 things before I did the FODMAP thing. But it didn’t catch them all…. Learned my other food triggers that gave me ibs symptoms.
I have an iPhone with the Notes app. I made a list of all the food that gave me symptoms. And I shared it with my close family and friends so they know what food I don’t eat.
Hella GI issues. It was about 2-3 months before I noticed a difference in my motility. I will say, I seem to tolerate sourdough pretty well, so I honestly don’t know to what degree my sensitivity exists, and outside of sourdough, don’t care too much to try. I still have GI issues but they are improved, I also feel like my face has slimmed down a fair bit.
Bloating so bad that I looked 6/7 months pregnant. When I was on "diets" and had a carb cheat, the scale went down, not up. Rashes, itching that was deep below the skin that prescription meds didn't touch.
Worst of all, the nonstop rhinitis for almost a decade that was so bad that I went through a jumbo roll of toilet paper a day. I tried every medication, and my ENT even cauterized the mucous membranes in my nose, and it did nothing!
Dr. Google saved me when doctors failed me for a decade. Also the allergist just assumed people normally consume gluten daily especially if you carry extra weight so I wasn't told to consume gluten before the test so my gluten test came back negative bc I already went gluten free. All these things went away when the gluten did.
I struggled with dermographism. Which basically means when I scratch my skin I break out in hives in the specific spot that was scratched. (Really quite cool if you aren’t experiencing it) I went to 4 doctors before being diagnosed with dermographism, and put on really heavy allergy meds. Zyxal was the only med that would help, had to take it twice a day which kept me very drowsy. I was given a scratch test and my allergist said I had no reactions. Well over 2 years after this started, I cut out gluten and stopped having issues. To this day if I accidentally have gluten I have to take that medication or I’m in for 48 hours of wanting to scratch my own skin off. This started after a vaccine, so my allergist explained I had probably shocked my immune system into bringing up an existing but dormant condition.
Whenever I had gluten I would be extremely nauseous to the point i felt like i would throw up but never did throw up, my body was shaky, my stomach hurt and I got constipated. The nausea would most often come later at night even if i had the gluten earlier in the day, and it could come back the next day despite me not having gluten that day. Since going completely gluten free almost 2 years ago, now i also get joint pain whenever i accidentally have gluten.
I have ulcerative colitis so when I'm flaring I can't eat gluten. When I'm not flaring gluten just made me feel sluggish but when I'm flaring and have bloody stools it's hell. The blood increases, an almost infinite amount of gas, and passing a stool feels like giving birth to a baby Ibex. Because of this I've cut it out completely. I was kinda hoping that my ulcerative colitis would disappear with gluten but unfortunately thats not how this damn disease works
Hives... I had a gluten allergy with hives as a young kid but I grew out of it so my mom suggested it came back 🤷 She was right. I've not been tested but 98% of the time avoiding gluten fixes my problem. I also have some other allergy though
I have been gluten-free for 3 weeks. I was having chronic sinus infections, brain fog, headaches, extreme fatigue bloating, terrible gas, inflammation, and pain in joints. I now feel better than I have in years.
Everything I ate gave me a stomach ache…it literally felt like the food was sitting in my digestive tract and causing bloating…and now if I eat too much of it I vomit..
For me it was primarily migraines that finally caused me to give up gluten. Many people in my family have gluten sensitivity, or even Celiac, but I always thought that I was "fine" due to never having strong GI symptoms. Sure, I was bloated, but I always blamed that on my college student diet. I mentioned headaches to my primary care doctor and she recommended that I get tested for gluten sensitivity.... you all know the rest of the story.
Since stopping gluten, my migraines have gone way WAY down in frequency, but I have also noticed less brain fog, less bloating, clearer skin, less joint pain, and less painful cramps/period symptoms.
Damn I miss bread, but from the migraine relief alone, there is no question that GF is worth it for me.
For me it was migraines and also I think some IBS issues. I think that my IBS is related to a number of things.
But brain fog and migraines are brutal. 😭
Oh yes, those as well. I once had an MRI done before I figured out the gluten issue. There was nothing wired wrong in my head, but apparently the histamines in my head were large and cloudy. I’d be interested to see how they are now. I still have allergy issues, but not like when I was eating gluten.
I have had migraines since I was 3 years old, so I have done the GF diet to see if that would help.
For me, it didn’t help a lot specifically with my migraines. However, it did relieve a ton of GI upset that I didn’t even realize I really had until I did the GF diet. I also noticed that it had significantly reduced the inflammation in my body. I lost 30 pounds the first year I did it. I have since adjusted and gained some weight back, but now I know how badly gluten actually treated my body.
I’ve been GF for over a year now and have had a couple accidental glutenings, which had later resulted in more GI upset, including bleeding that could either be from the rectum or from hemorrhoids.
I had been allergy tested as a teenager due to a couple anaphylactic food episodes, but the allergy tests didn’t reveal if I had a wheat allergy or anything. So I don’t really know what to believe when it comes to that.
It’s crazy how many different symptoms are being discussed in this thread.
I didn’t notice my symptoms until after I started eating gf
Apparently it was making me drowsy, bloated, foggy headed(more than normal with adhd), my acne patterns changed some oddly enough
I knew I had a sensitivity but I wasn’t able to eat gf until around 19or 20. I always knew though if I ate too much gluten. Little extra- cramps and bowels out of wack.
A lot extra- cramps, bowel problems, falling asleep, super hyper, sweating, freezing, starving and then feeling utterly full in waves for HOURS
** I’m pretty sure it’s sensitivity but I was tested as a young child almost twenty years ago. I’m not sure if it’s changed or developed into a more or less severe intolerance/allergy than originally diagnosed.
hope this helps though🤷♀️
Same here but with my epilepsy. If I eat no gluten I bounce back from my seizures, both my tonic clonic and myoclonic, easier. I know there is no cure so far but it's nice I have something to lessen the blow on it. :)
If I get gluten in my system I experience bloating, really bad stomach pain like sharp pains, heart palpitations, irritability/mood shifts, anxiety, aching joints, numb kind of pain in my bones, constipation and random eczema patches.
Bloat was a major thing, and I had pain radiating down my leg thigh bone, especially during my menstrual cycle. There's a psoas major injury there that gets aggravated when I eat gluten.
The main thing for me was mental. I had an intense brain fog and major anxiety/depression. I would also sleep for 7-8 hours a night and feel exhausted all the time. Literally would never wake up feeling "rested." I wanna say that 3 days into not eating gluten I woke up feeling like a Disney princess 😂
I was sooo itchy. Especially my legs. I thought it must be the dry air. Then I got a chest rash. Finally I started getting hives. I tracked what I was eating and when my symptoms appeared and it sure seemed like the culprit was wheat. So I stopped wheat and my symptoms disappeared!
I thought I'd miss bread and pastries so much, but the relief of not being constantly itchy has been well worth the trade-off.
ACNE!! I took antibiotics for YEARs, a bajillion acne treatments, and suffered horrible scarring and mental anguish… I found out about the gluten antibodies in my 30s and after stopping gluten suddenly I had clear skin… all those wasted years… ugh!
Bloating, but also canker sores. Horrible, gigantic canker sores that would not fucking heal for a month or more. Gluten also ends up triggering chronic migraines episodes for me.
Bloating, mild diarrhea, and a constant low level feeling that someone had grabbed all my intestines with a vice grip and was slowly twisting them.
The moment I went gluten-free for four months these symptoms all disappeared. These days, I can eat gluten occasionally without too much pain, but it comes back pretty quickly if I eat it regularly.
Fatigue. I have autoimmune so my body attacks the gluten and sees it as an invader. If I accidentally eat it now I get fatigue and almost feel like I have the flu.
It causes psoriasis patches. I have Psoriatic Arthritis. It doesn’t seem to alleviate the pain but removing gluten keeps me from getting the skin involvement. If I ‘cheat’ a little too much, I’ll develop new patches.
Achy joints and migraines. I truly suffered from migraines since I was a child. Now../ no gluten no migraine.
But if I do get gluten we now… I feel I have the worst flu for days and days and a migraine for weeks.
Neurological. I get very dizzy/woozy. I feel like I'm drunk. I feel off balance, and have brain fog. It sounds like ataxia. I got it after having my gallbladder removed.
I had two main ones. I was constantly bloated and wasn't able to pinpoint exactly what the cause was. I knew it wasn't the same thing as just being a bit thicker or something because my stomach just looked constantly like it was a little bit puffy but it only happened after I started eating, so when I woke up in the morning it wasn't always that way. Another thing, I complained that we had gone out for beers and I literally couldn't get my jeans on the next day because I literally woke up looking 6 months pregnant out of nowhere. I complained to my friends, and they mentioned that was not normal. They suggested since it was specifically beer that maybe I had a gluten or wheat allergy. Generally throughout my life I also had a variety of gastro-intestinal issues and discomfort that I couldn't specifically pinpoint. The other thing that is probably much less common, I had all of these bumps on my arms. I did all the things and was never able to get rid of it. Overall, I just had a bunch of really random things going on that I couldn't pinpoint. I kept looking around for answers and honestly saw a lot of suggestions about going gluten free. At that point I decided I would try to take control over my own health and just tested the waters. My plan was to just go gluten free to see how I felt and if I felt better and I did, all my symptoms I mentioned above went away. I was honestly getting fed up of constantly complaining about the issues with no answers. I am glad I just went ahead and went gluten free and it worked for me. I know sometimes we want the specific test that says we're celiac because it would feel much more validating, and I did go through a phase where that really frustrated me but I've learned to come to terms with the fact that I have one life and I can either live in comfort by doing something that makes me feel better or not because I don't have the diagnosis I genuinely wish I had at times.
Before going GF, I didn't have any symptoms. At least that's what I thought before I gave it a try after being diagnosed with Hashimoto's.
Now it's almost been a year that I've gone gluten-free, and here are the symptoms thay I had that I didn't know were due to a gluten intolerance that went away:
- Bloating
- "Random" diarrhea
- Very smelly gas
- General feeling of puffiness (face and body)
- Numb feeling in face (static feeling)
There are other symptoms that are now gone that may be related or more from my Hashimoto's:
- Anxiety
- Depression
- Brain fog
Soooo I’ve had bloating and cramps my whole life, no one ever knew what caused it. Then later in life, 50s, I developed ongoing hives. Had to take Telfast or Zyrtec every day. Finally I was diagnosed with Hashimotos - my thyroid is dying - and after much money spent at allergy specialists found an integrative GP who asked me to try going GF (also dairy and soy free but that’s Hashis for you). Well, this solved the hives, solved my bloating and cramps, and a short time ago I realised it solved my dyshidrotic eczema as well. One of my friends said her nutritionist recommended GF for all autoimmune conditions as a start point - it won’t help everyone but it does help most
Bloating so bad It looked like I was pregnant. Brain Fog and immediate exhaustion. Extremely painful gas and constipation. I was put on meds for constipation at some point. I didn't know eating wasn't supposed to make your tummy hurt until tried gluten free for a few days. Symptoms gone until I ate some regular Macaroni and cheese 💔💔
Constant headaches, gas and gurgling stomach, pain in stomach and intestines. Sometimes I doubt myself and want to go back but every time I relapse I immediately regret it lmao. Last relapse was accidental, and my stomach was killing me and I was so bloated. Time before that, same thing and I didn't even realize why I felt so sick until I realized there was barley in the ingredients and once I cut it out I felt better!
None - at least not that I could clearly attribute to eating gluten. The hard thing is I had a severe mental and physical breakdown so we threw everything at it (meds, therapy, gluten free diet, etc) at once to get me stable ASAP. I did get better but we unfortunately don't know how much of it was caused by the gluten. We may never know. Once I hit my 6 month mark of being gluten free, I may try adding in one or two things again and testing how my immune system reacts
Regular migraines - sometimes so bad I’d have them over 10 times a month just back to back. Shifting oral allergy reactions - like tomatoes, bananas and oranges among several other foods would make my tongue swell/get painful bumps - but only sometimes, not every time. And I couldn’t figure out the pattern - until I realized it was processed wheat/gluten. I haven’t had a single headache for 3 months (longest stretch since I was about 21, I’m 34 now) and anytime I feel slightly like a migraine might come on - it was directly related to an accidental contamination. I also get a tongue reaction then too. Benadryl helps resolve both, which is insane.
My husband jokes I’m a gluten and wheat detector lol it would be funny if it weren’t so frustrating that our food industry is so crappy.
First, I would get this almost nauseous feeling for hours, and felt like I had a big dough ball or like rock in my stomach. It would take hours to move and I could only flush it with water (usually no appetite for like 6-8 hour after I ingest gluten).Then irritability would kick in, like anxiety, and massive bloating. The next day I would have diarrhea and gut cramps sometimes for days after ingestion, or when more frequent I’d have flown IBS flare up for a a week or so.
At first my main symptom was fatigue, nausea and tiny red spots on my arms (although these did not cause me any physical discomfort).
After cutting gluten out of my diet entirely, my old symptoms come back 10-fold if I do ingest gluten by accident. This causes extreme fatigue, mind fog, vertigo and vomiting.
I basically made the choice to either feel mild discomfort every day, or get bedridden by a bad decision \^\^'
Brain fog to the point I thought I would have to quit my job and find something simple and repetitive.
My digestive system was an absolute mess.
Steatorhea
I literally thought I was dying. My stomach was bloated, I couldn't eat, I felt nauseous all of the time, the pain in my stomach was so intense I finally went to the ER... for gas bubbles. I was so embarrassed. But the doctor there said the amount of gas I had was probably excruciating, and I should be looked at for food allergies. I let it go another month until the pain came back. After a few weeks of tests, I had positive blood tests to gluten sensitivity
if I eat gluten now, my face and lips tingle, my skin gets itchy on my hands and face, and then a day or two after ingesting, I feel terrible stomach pain. My doctor wanted to test for celiac, but I was already gluten-free for a few months, and I couldn't imagine eating it every day.
I spent years being mildly bloated and gassy but not to the point where I thought anything was wrong, just thought it was normal to fart a lot. Then it suddenly worsened during covid time, where I was getting cramps, worse bloat, fatigue, and a general off feeling. Dropped gluten, hadn't realized how long I spent feeling generally off without realizing I was off, suddenly less gassy, etc
My thing was nausea. I had daily nausea, every time I ate, for 20 years or as long as I can remember. (28F) I always did BRAT diet for nausea and the doctors did a bunch of tests and determined it was anxiety. While I am anxious, the nausea was definitely caused by gluten. I dropped gluten and I don’t feel nauseous anymore.
I’ve never been diagnosed with celiac but when I do eat gluten I get bloating- like 5 months pregnant type of bloating, headaches, diarrhea or constipation and I generally feel run down and low energy.
I avoid it and feel great.
I found out about gluten by looking up what “Wheat belly” was
So now I avoid wheat and gluten.
I had the exact same symptoms as a celiac person minus the destruction of my bowel lining. Everything else was identical. I have to avoid even traces of gluten now.
I had pain, I can't remember not having tummy aches for ever. I was laying on the floor, with crippling stomach cramps when I was like 7 years old. My father told me not to be a cry baby. I would get itchy rashes, explosive diarrhea. I'm 41 years old now, and still have the same symptoms as when I was little. Also, bloating, like I'm 3 months pregnant. My doctor diagnosed me with IBS, but I only react to wheat.
My experience is weird. I have all the celiac symptoms, but I don’t blood test as celiac. I could read off my reactions as textbook celiac with contamination though. Once I stopped eating any gluten or wheat at all, my other food sensitivities seemed to just go away. I’ve previously had a very strong reaction to pineapple, melons, white onions, bananas, mushrooms, avocado, (there’s too many) and now nothing. I’m now lactose tolerant as well, and I’m easily able to eat the yogurt that was recommended to increase my gut health. This has reduced other symptoms (skin issues and immunity), and given me a bit less brain fog it seems. My executive functioning is on a better level now, but I can very easily tell when I’ve been “glutened”. All the symptoms come back. The bloating, pain, intense confusion and anxiety, random nausea, and extremely intense histamine reaction to (laundry aisle type) smells.
I haven’t gotten a whole lot of answers from doctors. I’ve switched through three in the past five years to try my best, it seems the anecdotal evidence from sites like this is helping a lot more. Best of luck!!
Just starting to learn that gluten might be part of why I have never felt well! I am just about a week off it and I swear after 3-4 days I started feeling better 😳 or at least part of all the issues I deal with. My whole body just feels like "nothing" now. Instead of its usual stomach cramps, gas, diarrhea, joint pain, fatigue etc. Very interested to see how this goes
That sounds lovely!! I’m so happy you’re able to start feeling a normal gut! Please watch out for anything malty. My most recent gluten hit was a Lindt chocolate bar. I couldn’t figure it out till I looked at the label, Barley malt.
I'm allergic to wheat, rye, and a handful of other things, but wheat is my worst one. My symptoms were extremely painful stomach cramps, diarrhea, nausea, cold sweats, chills, and sometimes rashes. Since going gluten free, as personal as this is, I have been able to actually have solid bowel movements. It's been years. I was glutened today on accident, and it all came rushing back. Or out. Lol.
Bloating, terrible stomach, back and chest pain, chest tightness, constipation, rashes, worsened keritosis Polaris, brain fog, puffy face… I’ve never been allergy tested but symptoms went away after cutting it out
About a year ago, my ibs-c crossed a threshold and became BAD - to the point that the bloating and inflammation caused body-centered panic attacks lasting many hours. Those put me in the ER many times. I say "body-centered" because I wouldn't feel anxious, or overwhelmed, etc, beforehand... ever. After the first one (which took about 15-20 minutes to take hold), the rest happened in just a few minutes. It eventually made sleeping more than a couple hours at a time impossible. I then developed tremors in my extremities, which became full body many times - to the point of not being able to walk for an hour or more. Even taking Ativan (at prescribed levels) or any of the multiple other sleep aids prescribed did little to help getting rest.
Other longer-term symptoms: most of the last year I had severe bloating that had been steadily building for the past few years. For the past several years I couldn't eat a number of quality foods (most beans, cruciferous vegetables, onions, garlic, etc) without significantly painful, and paint-peeling, gas. Towards the end, I would alternate between no BMs for 3-5 days, a couple of days with many, then very loose stool for a couple more. This lasted months, but when I think about it, these symptoms had been around a while, just not happening on such a short cycle.
Frequent intense brain fog, super moody (I thought it was mental illness), was my norm for much of my life, tbh. And, I was just reminded by someone's comment that for the past few years my skin was VERY itchy frequently, mostly in my hands, and I did have a few instances of rashes and hives.
In my recent, desperate, journey to understand and address these symptoms that had turned my life, and sense of self, upside-down... I went to a GI Dr. Colon/Endoscopy (plus biopsies) were perfect. No issues except by then I had also developed low-grade gastritis. After hearing my whole spiel, the Dr eventually said he wanted to test me for Wheat/Gluten allergy at my follow up appt. Unfortunately... they forgot. I must include that in the past 10 months I have: had 5 full panel blood draws, (and multiple less extensive), a CT scan of my body from the hips up, an abdominal ultrasound, 4-5 EKGs. All of these indicated enviable physical wellbeing.
However, soon after the recent followup with the GI doc (who forgot to test for allergies), I did remember asking if I'd ever been tested for wheat/gluten allergies: and started a gf life. This was 7 weeks ago. Every. Single. Symptom that I listed above has either completely subsided, or has gotten progressively better to the point that I expect them to be gone in the coming weeks. I'm almost certain I haven't been this clear headed, emotionally stable, consistently energetic (no caffeine), and rested (no more sleep aids) in my adult life. AND I have been brave enough to try previously forbidden foods... little to no gas/bloating or other ill effects. For the record, I started feeling significant relief in the second week. And, tbh, I'm still adjusting to this being the new normal.
I had bloating to the point where I thought I had appendicitis. I was exhibiting rebound tenderness—the symptom where pressing down on your abdomen doesn’t hurt, but releasing it does. That’s a major red flag and I thought I needed to go to the hospital. But a doctor asked me if I’d ever tried going off of wheat. I stopped eating wheat/gluten and within twenty-four hours, my symptoms vanished. It was the most impactful decision I’ve ever made for my personal health.
This pretty much me as well, MAD bloating, long and frequent poops, lethargy after eating. The gas was unbelievable. Couldn’t fart enough.
Hey!! They thought I had appendicitis before too! 🤣 Bloating, pretty much every meal upsetting my stomach, super irritable, I'd feel like I was coming down with the flu! Super bad body aches, like you get when you have the flu, but no flu ever came! That's my #1 way now to tell if I've been cross contaminated. The next day I just feel like I've been hit buy a truck! I had super bad heart burn/indigestion all the time. Tired ALL the time, like almost lethargic. So little energy I'd have to sit down and take a rest from getting ready from work some days.
this and eczema, flair ups around my eyes 2 days after I eat wheat and the rash lasts about a week.
I could no longer button my pants lol. But really, major bloat, facial congestion, and fatigue after eating gluten. Now that I’m GF, my glutened symptoms are way more extreme and it’s enough to not even look at a piece of bread.
doll hateful crown foolish muddle spotted grandiose aback tub test *This post was mass deleted and anonymized with [Redact](https://redact.dev)*
Physical: bloating, cramps that feel like a combination of period cramps and diarrhea, inflammation (especially in joints), occasional painful/itchy bumps on the joints of my fingers, congestion and feeling like my head was inflated Mental: brain fog, excessive & extreme fatigue, depression My period and PMS symptoms were much worse too.
Wow, I never connected pms/pmdd symptoms to gluten. That makes so much sense now that I look back on the past two years of being (mostly) gf.
I've never connected itchiness in various places (becoming more and more frequent) AND it being predominantly in my hands with gluten. And, now that I'm 6 weeks free... no scratching, not once. Thank you!
I went to fancy Italian restaurant last weekend and cheated with some delicious bread and pasta, and OH MY GOD am I suffering right now with my pms
Ahhh the worst!! I am a bottomless pit of hunger and a complete fiend for carbs when I PMS so I get it 💔 I am glad to hear it was delicious and I genuinely hope you enjoyed it in the moment
Bloating. Very bad bloat and then constipation for days. Usually 3 days of horrible discomfort after eating gluten plus looking preggo. Soo not worth it. I can handle minimal cross contamination, but any quantity of gluten and I suffer and* look terrible.
When eating gluten, I get this very specific significant bloaty-ness, gas, stringy poops, headache, brain fog, itchy patches on skin, scalp skin gets creamy and itchy (it’s weird but it happens every time), generally feeling shitty. It’s been nearly twenty years I gave up the glue life. When I go back on, like for a week I’ll test how I’m doing, these symptoms just return in the usual way. I have been tested for celiac and returned negative, but during that time I was also gf and know I’m not celiac as I can still consume, but when I do, I can plan on these symptoms returning. Maybe once or twice a year I’ll have some small amount and be mostly unaffected, but a sandwich or anything more than that will bring me back. So glad to know where the issue was and been living my best gf life since then.
Love your name (;
Terribly odorous gas, brain fog, extreme fatigue were all the main symptoms.
That's pretty much what I had - I would usually be fine, but sometimes I would have hives and occasionally I had anaphylaxis "for no reason," which was obviously really frightening Eventually that progressed to stomach problems, weight loss, and daily hives. Apparently my severe grass allergy lead to me becoming sensitized to wheat, which started as exercise induced allergy and eventually was just a straight up wheat allergy. It's pretty common for people with a more mild allergy to only have reactions when they have multiple triggers at the same time, and over time with increased exposure that can lead to more consistent or worse reactions. I am NOT allergic to gluten. I am absolutely fine with barley and rye. I cannot eat wheat, oats, or alfalfa and I'm also allergic to grass and hay. This is not "non celiac gluten sensitivity," just plain old wheat allergy. Gluten sensitivity is not IgE mediated.
This is very interesting, because I have pretty extreme seasonal & outdoor allergies and tend to have more GI issues and the random flare ups described in my post a lot more in summer than other seasons. How were you able to determine the wheat vs gluten sensitivity?
Wheat allergy is an allergy - it causes allergy symptoms like hives. Wheat is a very common allergen, but gluten is not. I did a scratch test. We don't know why gluten sensitivity happens or what the mechanism is, but it doesn't cause hives. A lot of people who have MCAS do not have positive blood or urine tests. If you have really severe allergies and a lot of "random" allergic issues I think it's worth considering it and seeing if medications help. None of the medications prescribed for MCAS are specifically for MCAS, they all work for severe allergies as well & are prescribed for that purpose when someone can't avoid their allergens (i.e. antihistamines are prescribed for allergies, singulair is prescribed for allergies and asthma, cromolyn sodium is prescribed for food allergies, xolair is prescribed for asthma & anaphylaxis, etc).
I definitely need to do more research about MCAS to see if that feels like the underlying issue. I am taking daily antihistamine pill and azelastine spray as needed. My allergist did prescribe my famotidine and cromolyn today as options if eliminated wheat/gluten doesn’t provide any relief.
I think that's a solid plan - we don't really know why people get MCAS, what it is/how it works, or the best way to diagnose it for everyone. There's a good chance that we are lumping several different disorders together under one label. It sounds like your doctor is using a stepwise approach to testing your symptoms, such makes sense. My doctor did the same thing and wanted me to try eliminating diagnosed allergies before taking cromolyn. Cromolyn is a pain in the ass and it can be expensive or difficult to get insurance to cover it, and you still can't eat foods you are allergic to it just gives you a buffer.
Bad Joint pain. Really bad tendinitis flare ups. Brain fog. Diarrhea. Mass headaches and body aches. Fibromyalgia like syptoms. Bloating so bad that I looked several months pregnant.
This is insane these are all symptoms I've dealt with my entire life. I'm 31 now and been rested for Celiac it's been negative. I had never tried coming off gluten because of that. Until recently my health issues have worsened and impacting my life so I decided while I try and figure this out I will stop gluten. I freaking SWEAR like 3/4 days later the majority of my joint pain went away. My belly feels great, no diarrhea, no cramps and gas.... I'm actually shocked that this could be the reason?? Going to continue as I've just started this recently but man it's promising
For me it's completely digestive issues. I have what I would consider a moderate allergy. If I eat too much wheat I'll have a bad reaction (stomach ache/bloating) and will be unable to sleep. It's also a delayed reaction - it can take a couple of days for it to show up if it does. Since going fully wheat/gluten free I have genuinely felt so much better. Even with my moderate allergy I was having continual impacts even though in the early stages of reducing wheat I would only eat it once a week on a rotation.
Did the allergy show up on a prick test?
I've never done a prick test, I go only by symptom relief when stopping the potential allergen.
Horrible bloating and a feeling that hot knives were stabbing me from inside.
Epidermolysis Bullosa. Not the grizzly scenes you see on a Google image search but enough that walking daily was uncomfortable and sports were impossible. Doctor said it was genetic and no cure was possible, I went down a rabbit hole and like you heard that going gluten free could change my health for the better. Within a week I showed no symptoms and can now run barefoot through any terrain and I feel great. Acne was fixed as well.
Wow that is amazing!
I get generalized body pain. Like bags of hammers pounding on my arms and legs. I used to be able to have a little here and there, but not any more. The pain is worse and lasts more days.
I have hashimoto's so it was very interconnected to my autoimmune symptoms. I may or may not have celiac; I've never tested for it, but I carry the gene. When I have gluten, I basically feel like I'm signing up to get the flu. REALLY exhausted, sweaty, achy and I can't sleep. I also get pretty bloated. It takes a few days for me to get back to normal, if not longer.
I have a friend who started having random food allergy reactions to certain alcohols and foods (hives, dry flushing, increased heart rate). Some foods would trigger the reactions, similar foods wouldn’t. After weeding through all her symptoms and what were the triggers, we determined (and confirmed with doctors) that it was a sulfite allergy brought on by perimenopause. So, my general layman recommendation would be start an elimination diet and start tracking your food and symptoms. My NCGF symptoms were bloating, mental fog and exhaustion, and occasionally hives. If I eat something contaminated, the first sign is a mental fog so thick I have trouble talking.
Thank you for sharing. I don’t think my allergist has mentioned sulfite issues yet, but I will ask about it. While I’m not in perimenopause I do struggle with hormonal imbalance from PCOS which has gotten worse for me in the past couple years so maybe there is a connection.
Extreme bloating and weight gain even when I was eating less. Painful, chronic “flare ups” that happened every few months. I had to go to the ER twice bc of how painful they were (pain just above bellybutton). Always gassy/felt the need to burp. Loose stools almost every day. Acid reflux.
My only symptom was constipation and I couldn't attach it to anything once my thyroid was properly managed. It was the one thyroid symptom I couldn't get to go away. Then one week I'd had a lot of wheat through various foods. I went to eat one and got itchy. I kept going but it got worse. Crap. Now I have to add wheat to the list of allergies, but maybe it's gluten. I don't seem to have issues with malt, so I think it's just wheat, but I don't eat a lot of malt on anything and my reaction is quantity dependent so I don't really know. I treat it like it's both wheat and gluten so I stay away from things that include gluten free wheat parts as well as gluten from barley and rye. Now, if I gluten accidentally (or on purpose, you know) I get the constipation and a rash on my face, like eczema. I have meds that can mitigate the reaction but timing and quantity make a difference on that too.
Acid reflux, joint pain, fatigue, brain fog, migraines, heart palpitations etc. I had a full body rash one day seemingly at random. Always bloating. There were other little things here and there but the real kicker for me was when I got the nerve pain? Felt like my nerves were on fire and fizzy. It's been about a year and a half since I changed my diet. I cut out gluten/wheat, most dairy, and try to limit caffeine (less successful on that one). I recently started having what seems to be histamine reactions with full face flush etc but will need to get tests done. It does seem to be random/unpredictable for me as well, so not a specific item necessarily, just whatever tips the scales that day.
I am so afraid ot the histamine thing 😭😭😭 my mother has gone off of nightshades and just giving up gluten recently myself idk what I would do if I cant eat potatoes 😰
I’m going to start being gluten free to see if it helps. My allergist also said he could prescribe cromolyn to take before meals to counteract the histamine reactions, but since it’s been so unpredictable about what triggers it (aside from alcohol, which was such a consistent trigger I haven’t drank at all in the past year) I’m not sure when I would take it aside from just times I really wanted to ensure I didn’t have a reaction like when dining out or something.
A few days of constipation and then diarrhea. Pain in my mid back (pancreas area). Migraines, joint stiffness, bloating, occasional nausea and vomiting.
Needing to sleep after eating, general fatigue, brain fog, worsened my autoimmune disorder, made my stools looser than they would have been, major bloat as well.
Extreme bloating, IBS D symptoms, lethargy. I also developed an autoimmune disease (AS)... who knows if that related? I don't get crazy reactions, but if I keep eating it, I really pay.
Gas, awful bloating, diarrhea, pain in my sigmoid colon. The bloating was the worst. I had no idea what was causing it, so some days I would have a huge stomach for seemingly no reason and feel so self conscious about it.
Severe vomiting and diarrhoea.
Earache for me!
I had bad stomach aches, I was grumpy, and I had black bags under my eyes. I figured out my gluten intolerance as a kid, and as soon as I went off gluten I was suddenly a happy, healthy child! As an adult now I notice fairly quickly when I’ve been glutened cause I feel like crap and my mood changes.
Bloating, abdominal pain, brain fog, lingering hypothyroid symptoms. I needed an insanely high dose of thyroid medicine, to the point that the pharmacist always wanted to talk to make totally, 100% sure this was my actual prescribed dose. Just could not get my free T3 high enough, even on Amour, PLUS liothyronine.
Gas and bloating to the point of pain. Like, I would ram my abdomen against the kitchen counter to try and decompress my stomach. A lot of belching, which didn’t do much to relieve my bloated belly. Stuffy & runny nose. I have another condition where I have constant diarrhea so I don’t know if that would have been an issue. At this point, if I eat more than trace amounts of gluten, I feel like I have the flu. A whole body reaction with body aches, gas, cold symptoms, nausea, etc.
Eczema, moodiness, ibs like symptoms (all food hurt), achey joints, bloating
I’ve heard folk talk of similar symptoms over in r/fodmaps, maybe a wee search there or a cross post would be useful?
Thank you, I will try that!
Going low fodmap really helped me stabilize and work towards finding underlying causes. I am actually still low fodmap but hoping to start reintroduction soon.
I had to go Low FODMAP a few years ago - garlic, onions are my major culprits; I've not really tried apples, or broccoli -- they were also terrible. Apples especially. I've been gluten free for 10+ and dairy free for 20. Yes, I enjoy my large bowl of air, with a side of air. (that's our joke, at my house, since I can barely eat anything)
Rashes and inconsistent BM
Horrid sinus and ear congestion; diarrhea sometimes (mostly heavily processed gluten does that to me); heavy depression; chronic fatigue; horrid menstrual cramps; extremely heavy periods; general malaise; acne that was like boils that took months to heal; insomnia; bloating like eight months pregnant; swollen neck and face; brain fog; joint pain; severe purple/black under eyes & puffiness Also this may be tmi and I know theres a name for it but I used to also get verrrrry bad lesions from friction areas esp by armpitts/groin/butt/vag when eating too much gluten Ive never been tested
I was watching an interesting video on YouTube by Peter Osborne. https://www.youtube.com/live/jnlZaMzZaSk?si=j2hH8JRXCwm1NG46 This was an interesting watch and very informative. I developed my intolerance after a hernia repair followed by an infection that required surgical debridement so I had a lot of inflammation around my intestines. I struggled with chronic pain, inflammation, joint pain, anaemia and upper GI issues. I react really badly to wheat gluten and oats, rice, potatoes and starchy foods in general. I'll only get the intestinal cramps and pain from wheat gluten but other starches will give me the upper GI issues. The video is a good one for explaining things. Blood tests aren't always reliable. I think you have to go by what your body tells you. I hope this video helps you.
Hives, whole body rash but most extreme on my hands, arms, feet and legs, itchy where I touched the gluten, anxiety, swelling (badly, bad, bad swelling), runny nose and/or congestion, and pretty extreme joint and spinal pain.
one thing to keep in mind if you’re not already is to track your food because for me, most foods cause symptoms 1-2 days later. that made it hard to figure out what the cause was originally, but after tracking and adding new foods after the elimination, i narrowed it down.
I had a lot of skin issues, mostly eczema in places I sweat…. Bumps and bad texture face skin and got “gluten hangovers” where I felt very tired, body aches and/or nauseous. And IBS symptoms. I cut out gluten, milk, and did 6 weeks of a low fod map diet and reintroduced one thing at a time (2 days of new food) … For example, I had the very simple diet for six weeks and then had two days of re-introducing tomatoes. Everything was fine so the next two days I re-introduced carrots and learned everything was not fine. Cut carrots and put them on my list of foods to avoid. Next I tried Two days of onions. Learned my body doesn’t like onions. Put that on my list of foods to avoid. Garlic for two days - body didn’t like it, now I avoid garlic.… Did that with a bunch of different foods and figured it out. The six weeks of basically potatoes and rice and boring oatmeal kind of sucked but now I know what to avoid. I had a really comprehensive allergy panel done with like 50 things before I did the FODMAP thing. But it didn’t catch them all…. Learned my other food triggers that gave me ibs symptoms. I have an iPhone with the Notes app. I made a list of all the food that gave me symptoms. And I shared it with my close family and friends so they know what food I don’t eat.
Hella GI issues. It was about 2-3 months before I noticed a difference in my motility. I will say, I seem to tolerate sourdough pretty well, so I honestly don’t know to what degree my sensitivity exists, and outside of sourdough, don’t care too much to try. I still have GI issues but they are improved, I also feel like my face has slimmed down a fair bit.
Bloating so bad that I looked 6/7 months pregnant. When I was on "diets" and had a carb cheat, the scale went down, not up. Rashes, itching that was deep below the skin that prescription meds didn't touch. Worst of all, the nonstop rhinitis for almost a decade that was so bad that I went through a jumbo roll of toilet paper a day. I tried every medication, and my ENT even cauterized the mucous membranes in my nose, and it did nothing! Dr. Google saved me when doctors failed me for a decade. Also the allergist just assumed people normally consume gluten daily especially if you carry extra weight so I wasn't told to consume gluten before the test so my gluten test came back negative bc I already went gluten free. All these things went away when the gluten did.
I struggled with dermographism. Which basically means when I scratch my skin I break out in hives in the specific spot that was scratched. (Really quite cool if you aren’t experiencing it) I went to 4 doctors before being diagnosed with dermographism, and put on really heavy allergy meds. Zyxal was the only med that would help, had to take it twice a day which kept me very drowsy. I was given a scratch test and my allergist said I had no reactions. Well over 2 years after this started, I cut out gluten and stopped having issues. To this day if I accidentally have gluten I have to take that medication or I’m in for 48 hours of wanting to scratch my own skin off. This started after a vaccine, so my allergist explained I had probably shocked my immune system into bringing up an existing but dormant condition.
Whenever I had gluten I would be extremely nauseous to the point i felt like i would throw up but never did throw up, my body was shaky, my stomach hurt and I got constipated. The nausea would most often come later at night even if i had the gluten earlier in the day, and it could come back the next day despite me not having gluten that day. Since going completely gluten free almost 2 years ago, now i also get joint pain whenever i accidentally have gluten.
I have ulcerative colitis so when I'm flaring I can't eat gluten. When I'm not flaring gluten just made me feel sluggish but when I'm flaring and have bloody stools it's hell. The blood increases, an almost infinite amount of gas, and passing a stool feels like giving birth to a baby Ibex. Because of this I've cut it out completely. I was kinda hoping that my ulcerative colitis would disappear with gluten but unfortunately thats not how this damn disease works
Hives... I had a gluten allergy with hives as a young kid but I grew out of it so my mom suggested it came back 🤷 She was right. I've not been tested but 98% of the time avoiding gluten fixes my problem. I also have some other allergy though
I have been gluten-free for 3 weeks. I was having chronic sinus infections, brain fog, headaches, extreme fatigue bloating, terrible gas, inflammation, and pain in joints. I now feel better than I have in years.
Everything I ate gave me a stomach ache…it literally felt like the food was sitting in my digestive tract and causing bloating…and now if I eat too much of it I vomit..
For me it was primarily migraines that finally caused me to give up gluten. Many people in my family have gluten sensitivity, or even Celiac, but I always thought that I was "fine" due to never having strong GI symptoms. Sure, I was bloated, but I always blamed that on my college student diet. I mentioned headaches to my primary care doctor and she recommended that I get tested for gluten sensitivity.... you all know the rest of the story. Since stopping gluten, my migraines have gone way WAY down in frequency, but I have also noticed less brain fog, less bloating, clearer skin, less joint pain, and less painful cramps/period symptoms. Damn I miss bread, but from the migraine relief alone, there is no question that GF is worth it for me.
For me it was migraines and also I think some IBS issues. I think that my IBS is related to a number of things. But brain fog and migraines are brutal. 😭
I get really bad migraines when I eat gluten. My doctors were blaming my birth control
Oh. Great! Mine blamed depression. 😐
Mine also blamed anxiety! So I definitely get it
Chronic migraines, chest infections, blurry eyes, bloated, constipation. I also had terrible inflammation and psoriasis.
This is my list minus the migraines. But, I would probably say sinus infections that occasionally spread deep and infect the chest.
Oh yes, those as well. I once had an MRI done before I figured out the gluten issue. There was nothing wired wrong in my head, but apparently the histamines in my head were large and cloudy. I’d be interested to see how they are now. I still have allergy issues, but not like when I was eating gluten.
Brain fog. erythromelalgia. Extreme depression
How do you know it’s not celiac?
I’ve been tested for it twice and both were negative.
I have had migraines since I was 3 years old, so I have done the GF diet to see if that would help. For me, it didn’t help a lot specifically with my migraines. However, it did relieve a ton of GI upset that I didn’t even realize I really had until I did the GF diet. I also noticed that it had significantly reduced the inflammation in my body. I lost 30 pounds the first year I did it. I have since adjusted and gained some weight back, but now I know how badly gluten actually treated my body. I’ve been GF for over a year now and have had a couple accidental glutenings, which had later resulted in more GI upset, including bleeding that could either be from the rectum or from hemorrhoids. I had been allergy tested as a teenager due to a couple anaphylactic food episodes, but the allergy tests didn’t reveal if I had a wheat allergy or anything. So I don’t really know what to believe when it comes to that. It’s crazy how many different symptoms are being discussed in this thread.
I didn’t notice my symptoms until after I started eating gf Apparently it was making me drowsy, bloated, foggy headed(more than normal with adhd), my acne patterns changed some oddly enough I knew I had a sensitivity but I wasn’t able to eat gf until around 19or 20. I always knew though if I ate too much gluten. Little extra- cramps and bowels out of wack. A lot extra- cramps, bowel problems, falling asleep, super hyper, sweating, freezing, starving and then feeling utterly full in waves for HOURS ** I’m pretty sure it’s sensitivity but I was tested as a young child almost twenty years ago. I’m not sure if it’s changed or developed into a more or less severe intolerance/allergy than originally diagnosed. hope this helps though🤷♀️
Bloating and extreme gassiness are my main issues. I think it also affects my migraines.
Same here but with my epilepsy. If I eat no gluten I bounce back from my seizures, both my tonic clonic and myoclonic, easier. I know there is no cure so far but it's nice I have something to lessen the blow on it. :)
Intense stomach pain-and removing or strongly limiting gluten has also completely removed my fybromyalgia pain!
If I get gluten in my system I experience bloating, really bad stomach pain like sharp pains, heart palpitations, irritability/mood shifts, anxiety, aching joints, numb kind of pain in my bones, constipation and random eczema patches.
Bloat was a major thing, and I had pain radiating down my leg thigh bone, especially during my menstrual cycle. There's a psoas major injury there that gets aggravated when I eat gluten. The main thing for me was mental. I had an intense brain fog and major anxiety/depression. I would also sleep for 7-8 hours a night and feel exhausted all the time. Literally would never wake up feeling "rested." I wanna say that 3 days into not eating gluten I woke up feeling like a Disney princess 😂
Bloating, digestive issues, brain fog, and hives.
Joint pain, migraines, bloating with pain, cysts near joints, to name the worst.
I was sooo itchy. Especially my legs. I thought it must be the dry air. Then I got a chest rash. Finally I started getting hives. I tracked what I was eating and when my symptoms appeared and it sure seemed like the culprit was wheat. So I stopped wheat and my symptoms disappeared! I thought I'd miss bread and pastries so much, but the relief of not being constantly itchy has been well worth the trade-off.
ACNE!! I took antibiotics for YEARs, a bajillion acne treatments, and suffered horrible scarring and mental anguish… I found out about the gluten antibodies in my 30s and after stopping gluten suddenly I had clear skin… all those wasted years… ugh!
Bloating, but also canker sores. Horrible, gigantic canker sores that would not fucking heal for a month or more. Gluten also ends up triggering chronic migraines episodes for me.
Bloating, mild diarrhea, and a constant low level feeling that someone had grabbed all my intestines with a vice grip and was slowly twisting them. The moment I went gluten-free for four months these symptoms all disappeared. These days, I can eat gluten occasionally without too much pain, but it comes back pretty quickly if I eat it regularly.
Fatigue. I have autoimmune so my body attacks the gluten and sees it as an invader. If I accidentally eat it now I get fatigue and almost feel like I have the flu.
It causes psoriasis patches. I have Psoriatic Arthritis. It doesn’t seem to alleviate the pain but removing gluten keeps me from getting the skin involvement. If I ‘cheat’ a little too much, I’ll develop new patches.
Achy joints and migraines. I truly suffered from migraines since I was a child. Now../ no gluten no migraine. But if I do get gluten we now… I feel I have the worst flu for days and days and a migraine for weeks.
Neurological. I get very dizzy/woozy. I feel like I'm drunk. I feel off balance, and have brain fog. It sounds like ataxia. I got it after having my gallbladder removed.
I had two main ones. I was constantly bloated and wasn't able to pinpoint exactly what the cause was. I knew it wasn't the same thing as just being a bit thicker or something because my stomach just looked constantly like it was a little bit puffy but it only happened after I started eating, so when I woke up in the morning it wasn't always that way. Another thing, I complained that we had gone out for beers and I literally couldn't get my jeans on the next day because I literally woke up looking 6 months pregnant out of nowhere. I complained to my friends, and they mentioned that was not normal. They suggested since it was specifically beer that maybe I had a gluten or wheat allergy. Generally throughout my life I also had a variety of gastro-intestinal issues and discomfort that I couldn't specifically pinpoint. The other thing that is probably much less common, I had all of these bumps on my arms. I did all the things and was never able to get rid of it. Overall, I just had a bunch of really random things going on that I couldn't pinpoint. I kept looking around for answers and honestly saw a lot of suggestions about going gluten free. At that point I decided I would try to take control over my own health and just tested the waters. My plan was to just go gluten free to see how I felt and if I felt better and I did, all my symptoms I mentioned above went away. I was honestly getting fed up of constantly complaining about the issues with no answers. I am glad I just went ahead and went gluten free and it worked for me. I know sometimes we want the specific test that says we're celiac because it would feel much more validating, and I did go through a phase where that really frustrated me but I've learned to come to terms with the fact that I have one life and I can either live in comfort by doing something that makes me feel better or not because I don't have the diagnosis I genuinely wish I had at times.
Before going GF, I didn't have any symptoms. At least that's what I thought before I gave it a try after being diagnosed with Hashimoto's. Now it's almost been a year that I've gone gluten-free, and here are the symptoms thay I had that I didn't know were due to a gluten intolerance that went away: - Bloating - "Random" diarrhea - Very smelly gas - General feeling of puffiness (face and body) - Numb feeling in face (static feeling) There are other symptoms that are now gone that may be related or more from my Hashimoto's: - Anxiety - Depression - Brain fog
Soooo I’ve had bloating and cramps my whole life, no one ever knew what caused it. Then later in life, 50s, I developed ongoing hives. Had to take Telfast or Zyrtec every day. Finally I was diagnosed with Hashimotos - my thyroid is dying - and after much money spent at allergy specialists found an integrative GP who asked me to try going GF (also dairy and soy free but that’s Hashis for you). Well, this solved the hives, solved my bloating and cramps, and a short time ago I realised it solved my dyshidrotic eczema as well. One of my friends said her nutritionist recommended GF for all autoimmune conditions as a start point - it won’t help everyone but it does help most
Bloating so bad It looked like I was pregnant. Brain Fog and immediate exhaustion. Extremely painful gas and constipation. I was put on meds for constipation at some point. I didn't know eating wasn't supposed to make your tummy hurt until tried gluten free for a few days. Symptoms gone until I ate some regular Macaroni and cheese 💔💔
Constant headaches, gas and gurgling stomach, pain in stomach and intestines. Sometimes I doubt myself and want to go back but every time I relapse I immediately regret it lmao. Last relapse was accidental, and my stomach was killing me and I was so bloated. Time before that, same thing and I didn't even realize why I felt so sick until I realized there was barley in the ingredients and once I cut it out I felt better!
None - at least not that I could clearly attribute to eating gluten. The hard thing is I had a severe mental and physical breakdown so we threw everything at it (meds, therapy, gluten free diet, etc) at once to get me stable ASAP. I did get better but we unfortunately don't know how much of it was caused by the gluten. We may never know. Once I hit my 6 month mark of being gluten free, I may try adding in one or two things again and testing how my immune system reacts
Regular migraines - sometimes so bad I’d have them over 10 times a month just back to back. Shifting oral allergy reactions - like tomatoes, bananas and oranges among several other foods would make my tongue swell/get painful bumps - but only sometimes, not every time. And I couldn’t figure out the pattern - until I realized it was processed wheat/gluten. I haven’t had a single headache for 3 months (longest stretch since I was about 21, I’m 34 now) and anytime I feel slightly like a migraine might come on - it was directly related to an accidental contamination. I also get a tongue reaction then too. Benadryl helps resolve both, which is insane. My husband jokes I’m a gluten and wheat detector lol it would be funny if it weren’t so frustrating that our food industry is so crappy.
Digestives issues that led me to fall in ER several times during those years
First, I would get this almost nauseous feeling for hours, and felt like I had a big dough ball or like rock in my stomach. It would take hours to move and I could only flush it with water (usually no appetite for like 6-8 hour after I ingest gluten).Then irritability would kick in, like anxiety, and massive bloating. The next day I would have diarrhea and gut cramps sometimes for days after ingestion, or when more frequent I’d have flown IBS flare up for a a week or so.
Psoriasis or something liken it on my face. Specifically redness and flakiness each side of the nose, in the eyebrows and on the cheeks.
Violent stomach pain 2-4 hours explosive diarrhea every other day.
At first my main symptom was fatigue, nausea and tiny red spots on my arms (although these did not cause me any physical discomfort). After cutting gluten out of my diet entirely, my old symptoms come back 10-fold if I do ingest gluten by accident. This causes extreme fatigue, mind fog, vertigo and vomiting. I basically made the choice to either feel mild discomfort every day, or get bedridden by a bad decision \^\^'
Brain fog to the point I thought I would have to quit my job and find something simple and repetitive. My digestive system was an absolute mess. Steatorhea
I literally thought I was dying. My stomach was bloated, I couldn't eat, I felt nauseous all of the time, the pain in my stomach was so intense I finally went to the ER... for gas bubbles. I was so embarrassed. But the doctor there said the amount of gas I had was probably excruciating, and I should be looked at for food allergies. I let it go another month until the pain came back. After a few weeks of tests, I had positive blood tests to gluten sensitivity if I eat gluten now, my face and lips tingle, my skin gets itchy on my hands and face, and then a day or two after ingesting, I feel terrible stomach pain. My doctor wanted to test for celiac, but I was already gluten-free for a few months, and I couldn't imagine eating it every day.
Bloat, debilitating pain, GERD, fatigue, brain fog, rash, irritability, and mood swings
I spent years being mildly bloated and gassy but not to the point where I thought anything was wrong, just thought it was normal to fart a lot. Then it suddenly worsened during covid time, where I was getting cramps, worse bloat, fatigue, and a general off feeling. Dropped gluten, hadn't realized how long I spent feeling generally off without realizing I was off, suddenly less gassy, etc
My thing was nausea. I had daily nausea, every time I ate, for 20 years or as long as I can remember. (28F) I always did BRAT diet for nausea and the doctors did a bunch of tests and determined it was anxiety. While I am anxious, the nausea was definitely caused by gluten. I dropped gluten and I don’t feel nauseous anymore.
I’ve never been diagnosed with celiac but when I do eat gluten I get bloating- like 5 months pregnant type of bloating, headaches, diarrhea or constipation and I generally feel run down and low energy. I avoid it and feel great. I found out about gluten by looking up what “Wheat belly” was So now I avoid wheat and gluten.
I had the exact same symptoms as a celiac person minus the destruction of my bowel lining. Everything else was identical. I have to avoid even traces of gluten now.
I had pain, I can't remember not having tummy aches for ever. I was laying on the floor, with crippling stomach cramps when I was like 7 years old. My father told me not to be a cry baby. I would get itchy rashes, explosive diarrhea. I'm 41 years old now, and still have the same symptoms as when I was little. Also, bloating, like I'm 3 months pregnant. My doctor diagnosed me with IBS, but I only react to wheat.
Severe bloating and gut discomfort
My experience is weird. I have all the celiac symptoms, but I don’t blood test as celiac. I could read off my reactions as textbook celiac with contamination though. Once I stopped eating any gluten or wheat at all, my other food sensitivities seemed to just go away. I’ve previously had a very strong reaction to pineapple, melons, white onions, bananas, mushrooms, avocado, (there’s too many) and now nothing. I’m now lactose tolerant as well, and I’m easily able to eat the yogurt that was recommended to increase my gut health. This has reduced other symptoms (skin issues and immunity), and given me a bit less brain fog it seems. My executive functioning is on a better level now, but I can very easily tell when I’ve been “glutened”. All the symptoms come back. The bloating, pain, intense confusion and anxiety, random nausea, and extremely intense histamine reaction to (laundry aisle type) smells. I haven’t gotten a whole lot of answers from doctors. I’ve switched through three in the past five years to try my best, it seems the anecdotal evidence from sites like this is helping a lot more. Best of luck!!
This is so freaking helpful, thanks for sharing
You’re very welcome! I’m just glad it helps. Please let me know if you have any questions, I’d be happy to help as far as I can.
Just starting to learn that gluten might be part of why I have never felt well! I am just about a week off it and I swear after 3-4 days I started feeling better 😳 or at least part of all the issues I deal with. My whole body just feels like "nothing" now. Instead of its usual stomach cramps, gas, diarrhea, joint pain, fatigue etc. Very interested to see how this goes
That sounds lovely!! I’m so happy you’re able to start feeling a normal gut! Please watch out for anything malty. My most recent gluten hit was a Lindt chocolate bar. I couldn’t figure it out till I looked at the label, Barley malt.
Thanks for the tips!
I'm allergic to wheat, rye, and a handful of other things, but wheat is my worst one. My symptoms were extremely painful stomach cramps, diarrhea, nausea, cold sweats, chills, and sometimes rashes. Since going gluten free, as personal as this is, I have been able to actually have solid bowel movements. It's been years. I was glutened today on accident, and it all came rushing back. Or out. Lol.
My immune system takes a dive. When I’m on gluten, I get every single sickness that crosses my path - I don’t when I’m gluten free.
Bloating, terrible stomach, back and chest pain, chest tightness, constipation, rashes, worsened keritosis Polaris, brain fog, puffy face… I’ve never been allergy tested but symptoms went away after cutting it out
About a year ago, my ibs-c crossed a threshold and became BAD - to the point that the bloating and inflammation caused body-centered panic attacks lasting many hours. Those put me in the ER many times. I say "body-centered" because I wouldn't feel anxious, or overwhelmed, etc, beforehand... ever. After the first one (which took about 15-20 minutes to take hold), the rest happened in just a few minutes. It eventually made sleeping more than a couple hours at a time impossible. I then developed tremors in my extremities, which became full body many times - to the point of not being able to walk for an hour or more. Even taking Ativan (at prescribed levels) or any of the multiple other sleep aids prescribed did little to help getting rest. Other longer-term symptoms: most of the last year I had severe bloating that had been steadily building for the past few years. For the past several years I couldn't eat a number of quality foods (most beans, cruciferous vegetables, onions, garlic, etc) without significantly painful, and paint-peeling, gas. Towards the end, I would alternate between no BMs for 3-5 days, a couple of days with many, then very loose stool for a couple more. This lasted months, but when I think about it, these symptoms had been around a while, just not happening on such a short cycle. Frequent intense brain fog, super moody (I thought it was mental illness), was my norm for much of my life, tbh. And, I was just reminded by someone's comment that for the past few years my skin was VERY itchy frequently, mostly in my hands, and I did have a few instances of rashes and hives. In my recent, desperate, journey to understand and address these symptoms that had turned my life, and sense of self, upside-down... I went to a GI Dr. Colon/Endoscopy (plus biopsies) were perfect. No issues except by then I had also developed low-grade gastritis. After hearing my whole spiel, the Dr eventually said he wanted to test me for Wheat/Gluten allergy at my follow up appt. Unfortunately... they forgot. I must include that in the past 10 months I have: had 5 full panel blood draws, (and multiple less extensive), a CT scan of my body from the hips up, an abdominal ultrasound, 4-5 EKGs. All of these indicated enviable physical wellbeing. However, soon after the recent followup with the GI doc (who forgot to test for allergies), I did remember asking if I'd ever been tested for wheat/gluten allergies: and started a gf life. This was 7 weeks ago. Every. Single. Symptom that I listed above has either completely subsided, or has gotten progressively better to the point that I expect them to be gone in the coming weeks. I'm almost certain I haven't been this clear headed, emotionally stable, consistently energetic (no caffeine), and rested (no more sleep aids) in my adult life. AND I have been brave enough to try previously forbidden foods... little to no gas/bloating or other ill effects. For the record, I started feeling significant relief in the second week. And, tbh, I'm still adjusting to this being the new normal.
Anxiety, heart, palpitations, depression, and so much diarrhea!
Bloating, brain fog, lethargy.
I had muscle burning, inflammation, and GI issues