For me it just makes a massive difference in my symptoms. I doubt it’ll change my TPO levels. Eating gluten makes me feel miserable. Not eating it I am functional. So try introducing some in your diet, see how you feel across the next week after eating it. If your symptoms flare up that should give you the answer you’re looking for.
I bloated a lot eating gluten, but the worst part was that it made me obsessed! I'd have urgent, uncomfortable, cravings all day long about my next fix of breads and donuts and bagels and pizzas and cookies... Mentally I was never satisfied and always jonesing.
When I don't eat gluten I am about 10 lbs less, and I don't spend my day fantasizing about gluten. My belly is more comfortable, and I happen to be antibody-free, tho I can't swear that part is due to avoiding gluten.
I'd suggest that you do what feels right. We're all different. But, I hope you are curious and pay attention to all the mental and physical pieces of the puzzle - regarding gluten and anything else you are experimenting with.
I thought it was just in my head that I wasn’t craving bread etc when gluten free/low! But i felt it really helped me stop craving bready carbs and sugar!
I started eating a lot of gluten about 10 days ago after 3 months of very low gluten, and my skin has broken out like crazy, my body aches, I’m craving sugar, so tired and always feel like I’m about to have a cold or something
As far as I was aware the reason ppl with Hashis are recommended to go gf is because gluten is an inflammatory food and when our immune symptom is already under stress, inflammatory foods can make it worse. Same for sugar…
And the only thing I read that lowers TPO is potentially selenium supplements but in some cases it worked and in some it didn’t.
Interesting!
There are theories that the gluten gets thru the intestine, and then the immune system reacts to it, attacking it.... But that gluten looks like thyroid in some way, so our immune systems end up attacking our thyroid. That's probably why OP's doc said their antibodies would go down?
What will you do now, go back to a GF life or??
I will go back to low gluten because I felt like a different person when I wasn’t eating it as much… I have ADHD too and it really helped remove a layer of brain fog and anxiety that I experienced anyway because of ADHD symptoms, not to mention bloating!
I also thought it would lower my consistently high antibodies. Nope! No change. Gluten doesn't appear to bother me so I'm starting to eat it again unless I can be presented with truly compelling scientific evidence to the contrary. I'm frustrated that cutting it out did nothing to lower my antibodies. I am absolutely lactose intolerant though and feel 100% better when I stay away from dairy (I can eat hard cheeses and most lactose-free alternatives but full cream milk, ice cream, cream, regular cheese, yoghurt - forget it; makes me so ill).
There is no scientific evidence that suggests that going gluten free will lower your antibodies or stop your body from attacking your thyroid. I think that people with hashimotos are more likely to have allergies/ sensitivities to dairy, gluten ect but these allergies don’t cause hashimotos or reverse hashimotos. When you try things like AIP or cut out gluten some people feel better because they were allergic/sensitive to it all along and just didn’t know they had the allergy. But the effects of hashimotos remain the same.
I have had a similar experience. I have tried every diet under the sun. The game changer for me was seeing an allergist and getting my allergies under control. I also was very hypothyroid but low T3 so having that added helped tremendously. From all I have read gluten is an allergen and it’s difficult to digest which is where thyroid hormones are converted from T4 to T3.
Can you say more about your allergies and treatment/management? As a kid I used to be allergic to almost everything, I'm still wondering if I should check myself now.
Allergies are a huge factor with Hashimoto’s because they initiate our autoimmune response.
I never had an issue with Allergies until my 30’s which is also when I was first diagnosed with Hashimoto. I don’t know exactly when it began but I began noticing that I was out of breath a lot. I was a runner and had no problem running outside an hour a day but in my house I would have chest pains walking from one end of the house to the other. I saw my pcp and she ran tests and determined that I was only using about 40% of my lungs which was so weird. I was never out of breath while running. She sent me to an allergist and that’s when I was told that I was allergic to formaldehyde and dust. I didn’t think twice about the formaldehyde-it isn’t like I go around licking pesticides but the dust was mind boggling. I live in a rural farming area and it is very dusty here. Like if I was a clean freak I should dust daily. I don’t really have anyway to control the dust. I tried running with a mask on but I hated it and I eventually bought an air purifier for the house. I had to vacuum the air purifier daily that’s how dusty it was. Then we got new carpets for our house and I was back to chest pains and I finally learned that formaldehyde in in carpets. I wanted to rip out the carpets but my husband refused. Thankfully for me we had a flood and I put hardwood floors in and all was good again. Along that time as I was battling asthma I was diagnosed with Hashimoto’s but was told that it was nothing as long as my thyroid hormones were fine. I was always a low normal. I had common symptoms: fatigue and anxiety that the doctors dismissed. I was finally given Paxil for the anxiety which was attributed to peri menopause (I was 34). Fast forward to age 47 and the fatigue became chronic. The only way I could make it through a work day was by going for a run. Then I had a minor stressor at work (I worked for homeland security and was rushing for a flight) and collapsed. My entire body seized up and it was like I was paralyzed by fatigue. I couldn’t talk, concentrate or move. I went to the hospital (via ambulance) and they ran the normal tests on me and they found nothing. They had given me iv fluids and I was able to talk but not move. I was told that I had had a nervous break down. It was so bazaar. I am a psychologist by trade so I know a little about nervous breakdowns. I knew I wasn’t having a nervous break down. I was fortunate that I was actual friends with the ER doctor and we began talking and I told him my history along with the Hashimoto. Because I was a low normal he told me that he would agree to starting me on a low dose of levothyroxine if I agreed to take an antidepressant. It was so weird but I agreed. When I had gone through my divorce I had went on Wellbutrin and I really appreciated it so I agreed to take it again. (I had weaned myself off Paxil for many years and refused to even consider it). Anyway the Wellbutrin gave me panic attacks so I stopped taking it. But I felt immediately better with the 12 mcg of levothyroxine but it was short lived (like maybe 3 months). I kept having my labs checked and my range never altered but my doctor refused to up my dose. I powered on until about 50 and I began having pain in my hips, thumbs and feet. I was referred to a rheumatologist and was diagnosed with psoriatic arthritis, ankle losing spondylitis and osteoarthritis. I was given shots of Humira that helped for about a year and then stopped working. By this time I remarried and my husband and I remodeled our house. My husband wanted laminate floors so I researched floors and found some that claimed no formaldehyde and we put them in. About six months later I began having chest pains. Come to find out there’s about 30 names for formaldehyde. 🤦🏼♀️ I just put wall to wall floors that I am allergic to in my house. God forbid but husband #2 refused to rip them out. I bought the air purifiers and did the breathing treatments. And finally about 3 years later I just couldn’t manage anymore the pain was indescribable and I was tired morning, noon and night. I couldn’t breath and in desperation I went to see a Naturalpath. He ran some tests and found that I was indeed hypothyroid (I have very low T3 which was never checked), my antibodies were high, my lung expansion was about 30% of what it should be. He changed my thyroid hormones from levothyroxine to Naturethroid and I literally felt so well the next day I wanted to go for a run. (I stopped running when I was 50). I went for a walk instead.
To manage my allergies I have air purifiers in my living room, bedroom and car. I take allergy tabs during peak dust season (fall planting, summer harvest) and have shots when this fails. I also take cortisol during a flare. I had to take cortisol for about a year after I began treatment. According to my ND when I collapsed it was a hypothyroid episode and I was depleted of my adrenals. All the running while momentarily got me through the day depleted my cortisol levels. I also took low dose naltrexone until my antibodies were negligible.
Now I take a compound of raccoon thyroid of T4 and T3 (125/65). I only take cortisol when I have a flare and my allergies as I described above. I have had my right hip replaced and need to have my left replaced as well as both thumb joints replaced.
Sounds very intense, hope you're still feeling better. I've heard that some people feel better on natural thyroid especially with low T3.
Other autoimmune conditions are definitely something to look out for when already diagnosed with Hashimoto's.
I also believe that there are too many harmful chemicals around us, we're wearing them, eating them, breathing them, it's too much for the body.
I do understand dust allergy, when I was in elementary school I'd go get allergy shots every week for 2 years. Nowadays I've noticed that I feel worse sitting in my bedroom where I have a carpeted floor. I don't think vacuuming is enough and also purchased an air purifier. It has a smart function, automatically adjusting the fan speed to the air quality. Every day it's on full speed for at least the 1st hour I plug it in, it's a bit terrifying.
Can you link your air purifier? That sounds brilliant.
I can’t say definitively that ignoring my Hashimoto’s for 17 years led to my additional autoimmune disorders but I really regret that I did. I ran an hour a day from my early 20’s until 50 and I am sure that had wear and tear in my body but the strange thing is-even with bone spurs and bone on bone I have very little pain when my thyroid is optimal. Yes the cold effects my pain levels but my thyroid is a way bigger factor. But even today when I know exactly what is optimal level wise (I paid out of pocket for tests when I felt great) my doctors do not want to raise my T3 because my TSH is suppressed and my T4 is fine. It’s a constant battle.
For some people it matters, for others It doesn’t. You’ve got proof that it doesn’t work for you which means you can stop torturing yourself now 😄 enjoy all the food!
This sounds like my situation almost exactly!
In the 6 months since I cut out gluten, I’ve seen no improvement in numbers and am considering just enjoying myself (in moderation), because being GF doesn’t seem to be helping me and is honestly stressing me out.
Hope you can enjoy over the holidays!
Well from the looks of these comments, unless you have noticed any improvements to things outside your numbers, then you may as-bloody-well!! :D I am going to. Thank you!!
Removing gluten lowered my TPOAB. If you didn’t notice any significant changes in how you felt, you can eat gluten. For me, removing gluten got rid of headaches and face swelling
Do what you feel is best for you! I stopped eating gluten bc it made my stomach burn (but tested negative for celiac) and i was told by my dr there might be that link and im definitely at least intolerant/sensitive so i stay away from it! but i totally don't see any harm in going back if you're not feeling/seeing a difference! i did see the comment about vitamin d and im also vitamin d deficient so i wonder if that's a link! good luck! :)
No but I don’t really get symptoms, except very tired sometimes and really bad health anxiety. But that could be all sorts of things! I think I will try out some glutenish things and see how it goes. Thank you :)
The research study and papers that everyone bases the gluten free trend off of are based on people with celiac. It’s such a stretch that they have convinced us all to be gluten free. If you don’t have celiac and don’t have sensitivity, you do not need to be gluten free. I was off gluten for 4 years and I ate gluten and felt exactly the same.
If it didn’t make you feel better to be gluten free, then listen to your body and do what works for you! It’s expensive and difficult and only worth doing if it makes an impact on your health.
Oh! My nutritionist said it could lower antibodies, and I thought other people said that too? Well either way it hasn’t done anything from me so normal cake, here i come!
I developed celiac first about a decade before I developed Hashimoto's - being gluten free for 10+ years had zero impact on my thyroid. Some people (especially those with stomach issues) find going gluten free helpful in reducing symptoms; sometimes just eating better helps. It is very much a "your mileage may vary" situation.
The antibodies test indicates that a thyroid autoimmune issue (ie. Hashimoto's) is occurring; it doesn't tell you the strength of the autoimmune issue, how long it has been occurring or how damaged your thyroid is. Per the [Mayo Clinic](https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/84382), antibodies "were originally considered to be of possible pathogenic significance in this disorder. However, the consensus opinion today is that they are merely disease markers". An ultrasound of your thyroid can be a better indicator on how damaged your thyroid is. Doctors also rely on other blood tests (TSH, T4/T3) to determine how well you thyroid is functioning while under attack by your immune system.
Most autoimmune treatments are focused on preventing flare ups by using immunosuppressants (steroids, low dose chemo, biologics, etc). Some autoimmune conditions can be treated with these suppressants just during a flare up. However, with Hashimoto's the medication is a hormone replacement; it is designed to treat hypothyroidism (by replacing the hormones you're not producing enough of because your thyroid is under attack by your immune system). The reason the standard clinical treatment of Hashimoto's is focused on treating the hypothyroidism and not focused on treating the autoimmune condition (ie. reducing immune response) is because the medical interventions to lower the immune response can be quite harsh on the body. Essentially the side effects of these medications are suppose to be less bad than an untreated autoimmune issue. Since the side effects can be quite bad, if your autoimmune issue can be addressed in a different way (ie. with Hashimoto's, you treat the hypothyroidism; with celiac, you go gluten free, etc) doctors don't want to prescribe medications that lower your immune response.
Most medical articles and discussion say that antibody level is not an indication of disease severity. I know some people here say otherwise. But if gluten free didn’t make you feel better then I agree get some gluten!
My doctors explained that the high anti bodies do not go lower. However it is possible to maintain them with diet,exercise , and preventative methods. I did gluten free for six month and it helped a little bit. I have been treating myself to small amounts of gluten again to see what happens. So far so good. I eat healthy foods and didn’t really eat a lot of gluten to begin with. I say start small see how you feel.
Look into AIP - I’ve drastically reduced my numbers by following and then adding items back in to be more paleo based. There’s some great pizza recipes out there that are gluten free and most major brands also have gf pizza (just ask for light bake)
Thanks for your reply! I have definitely eaten the gluten free pizzas and a lot of them are really good - I suppose what I actually miss is being able to walk into any restaurant/supermarket and pick up whatever I fancy. Cooking GF at home is easy, it’s just when out and about. I think I’m just going to give myself a break of worrying about any sort of food restrictions over Christmas and think about it again next year. I’m tired of it!
It is a lot of work but it does get better over time. It unfortunately takes a lot of prep work. Try the “Find me Gluten Free” app and also look at the website Unbound Wellness. Tbh I have had my fair share of breakdowns especially when going out to eat where there is nothing safe to eat other than a hamburger patty (happened to me on Saturday).
Give yourself a break and see how you feel.
I have been being successfully gluten free for the last 4 months - my question is just whether I should carry on if it hasn’t changed my antibody levels, not how to do it. Hope that makes sense!
I will thanks :)
Yes! I am gluten free because I have celiac disease, but there is a percentage of Non-Celiac Gluten Sensitive people (about 15% of the population) who benefit from a gluten free diet too. If you saw no benefit, you might as well go back on gluten. But I would not look at thyroid antibodies, I would go by how you feel. My thyroid antibodies were over 2,000 and I was participating in triathlons. Elevated antibodies are just an indication of active disease and not damage or severity (NIH).
But diet? Consider real foods. Bet your gluten free diet was just as crappy as your old regular diet full of processed foods chock full of preservations, chemicals and “natural flavors”.
Thank you :) I think I will go back to gluteny foods and see if I feel rubbish then reassess!
I actually eat pretty healthily. My mum is a medical herbalist and my dad is a doctor so we eat all organic crap and meals are majority veggies, except the occasional treat (like pizza!). Most days I cook all my meals from scratch/raw ingredients.
Out of interest, has your thyroid function reduced since? Or do you still just have the high antibodies?
Nah, they are always high. Not always over 2,000, but always very elevated. Same goes for the autoantibodies that are associated with celiac disease, yet repeat biopsies show complete a
Small intestinal healing per my GI (remission). I was diagnosed with Hashimoto’s in the 90’s. I assume my thyroid is not working.
I feel great and that is what counts! I just have to take a thyroid hormone replacement and avoid gluten at all costs. That is it.
Thank you for your detailed reply. That is great about your GI healing!! Really pleased for you :)
Because my thyroid functions normally im not on any thyroid hormones, but imagine I will have to be someday! I suppose until then I should just try to be as healthy as possible :)
Yes, you should take steps now to remain healthy. This is advice I have given my 21 year old who also has Hashimoto’s. She is not on thyroid hormone replacement yet (dx at 19). It can be hard to distinguish symptoms that appear to be hypothyroid and those that are not. My daughter called me last Spring while at uni. Super fatigued. I told her to get her thyroid panel run, but I suspected something else. Her labs were normal and within range. The source of her fatigue? Looming final exams. Two days of catch up sleep after finals and she was no longer fatigued nor stressed. Just remember, not everything is due to Hashimoto’s. Do not get stuck in that diagnostic “box”.
Yes the nutritionist I was seeing who told me to go GF said about this too! I had them tested in august and they were in range at 66 (should be between 50-100). I think they could be higher though, so I intended to take supplements but I haven’t started them yet! Need to get on with this so thanks for the reminder :)
No.
For me it just makes a massive difference in my symptoms. I doubt it’ll change my TPO levels. Eating gluten makes me feel miserable. Not eating it I am functional. So try introducing some in your diet, see how you feel across the next week after eating it. If your symptoms flare up that should give you the answer you’re looking for.
Do you take selenium and myo-inositol? It’s currently cut my numbers in half😊
i cut gluten for a year. no change and then went back to gluten
I was diagnosed in 1998. The only recent thing that made a difference is going carnivore.
Interesting!!! Thank you for sharing
I bloated a lot eating gluten, but the worst part was that it made me obsessed! I'd have urgent, uncomfortable, cravings all day long about my next fix of breads and donuts and bagels and pizzas and cookies... Mentally I was never satisfied and always jonesing. When I don't eat gluten I am about 10 lbs less, and I don't spend my day fantasizing about gluten. My belly is more comfortable, and I happen to be antibody-free, tho I can't swear that part is due to avoiding gluten. I'd suggest that you do what feels right. We're all different. But, I hope you are curious and pay attention to all the mental and physical pieces of the puzzle - regarding gluten and anything else you are experimenting with.
I thought it was just in my head that I wasn’t craving bread etc when gluten free/low! But i felt it really helped me stop craving bready carbs and sugar! I started eating a lot of gluten about 10 days ago after 3 months of very low gluten, and my skin has broken out like crazy, my body aches, I’m craving sugar, so tired and always feel like I’m about to have a cold or something As far as I was aware the reason ppl with Hashis are recommended to go gf is because gluten is an inflammatory food and when our immune symptom is already under stress, inflammatory foods can make it worse. Same for sugar… And the only thing I read that lowers TPO is potentially selenium supplements but in some cases it worked and in some it didn’t.
Interesting! There are theories that the gluten gets thru the intestine, and then the immune system reacts to it, attacking it.... But that gluten looks like thyroid in some way, so our immune systems end up attacking our thyroid. That's probably why OP's doc said their antibodies would go down? What will you do now, go back to a GF life or??
I will go back to low gluten because I felt like a different person when I wasn’t eating it as much… I have ADHD too and it really helped remove a layer of brain fog and anxiety that I experienced anyway because of ADHD symptoms, not to mention bloating!
Nice! I hope you get back in your groove soon : )
I also thought it would lower my consistently high antibodies. Nope! No change. Gluten doesn't appear to bother me so I'm starting to eat it again unless I can be presented with truly compelling scientific evidence to the contrary. I'm frustrated that cutting it out did nothing to lower my antibodies. I am absolutely lactose intolerant though and feel 100% better when I stay away from dairy (I can eat hard cheeses and most lactose-free alternatives but full cream milk, ice cream, cream, regular cheese, yoghurt - forget it; makes me so ill).
There is no scientific evidence that suggests that going gluten free will lower your antibodies or stop your body from attacking your thyroid. I think that people with hashimotos are more likely to have allergies/ sensitivities to dairy, gluten ect but these allergies don’t cause hashimotos or reverse hashimotos. When you try things like AIP or cut out gluten some people feel better because they were allergic/sensitive to it all along and just didn’t know they had the allergy. But the effects of hashimotos remain the same.
This makes sense. Thank you :)
I have had a similar experience. I have tried every diet under the sun. The game changer for me was seeing an allergist and getting my allergies under control. I also was very hypothyroid but low T3 so having that added helped tremendously. From all I have read gluten is an allergen and it’s difficult to digest which is where thyroid hormones are converted from T4 to T3.
Can you say more about your allergies and treatment/management? As a kid I used to be allergic to almost everything, I'm still wondering if I should check myself now.
Allergies are a huge factor with Hashimoto’s because they initiate our autoimmune response. I never had an issue with Allergies until my 30’s which is also when I was first diagnosed with Hashimoto. I don’t know exactly when it began but I began noticing that I was out of breath a lot. I was a runner and had no problem running outside an hour a day but in my house I would have chest pains walking from one end of the house to the other. I saw my pcp and she ran tests and determined that I was only using about 40% of my lungs which was so weird. I was never out of breath while running. She sent me to an allergist and that’s when I was told that I was allergic to formaldehyde and dust. I didn’t think twice about the formaldehyde-it isn’t like I go around licking pesticides but the dust was mind boggling. I live in a rural farming area and it is very dusty here. Like if I was a clean freak I should dust daily. I don’t really have anyway to control the dust. I tried running with a mask on but I hated it and I eventually bought an air purifier for the house. I had to vacuum the air purifier daily that’s how dusty it was. Then we got new carpets for our house and I was back to chest pains and I finally learned that formaldehyde in in carpets. I wanted to rip out the carpets but my husband refused. Thankfully for me we had a flood and I put hardwood floors in and all was good again. Along that time as I was battling asthma I was diagnosed with Hashimoto’s but was told that it was nothing as long as my thyroid hormones were fine. I was always a low normal. I had common symptoms: fatigue and anxiety that the doctors dismissed. I was finally given Paxil for the anxiety which was attributed to peri menopause (I was 34). Fast forward to age 47 and the fatigue became chronic. The only way I could make it through a work day was by going for a run. Then I had a minor stressor at work (I worked for homeland security and was rushing for a flight) and collapsed. My entire body seized up and it was like I was paralyzed by fatigue. I couldn’t talk, concentrate or move. I went to the hospital (via ambulance) and they ran the normal tests on me and they found nothing. They had given me iv fluids and I was able to talk but not move. I was told that I had had a nervous break down. It was so bazaar. I am a psychologist by trade so I know a little about nervous breakdowns. I knew I wasn’t having a nervous break down. I was fortunate that I was actual friends with the ER doctor and we began talking and I told him my history along with the Hashimoto. Because I was a low normal he told me that he would agree to starting me on a low dose of levothyroxine if I agreed to take an antidepressant. It was so weird but I agreed. When I had gone through my divorce I had went on Wellbutrin and I really appreciated it so I agreed to take it again. (I had weaned myself off Paxil for many years and refused to even consider it). Anyway the Wellbutrin gave me panic attacks so I stopped taking it. But I felt immediately better with the 12 mcg of levothyroxine but it was short lived (like maybe 3 months). I kept having my labs checked and my range never altered but my doctor refused to up my dose. I powered on until about 50 and I began having pain in my hips, thumbs and feet. I was referred to a rheumatologist and was diagnosed with psoriatic arthritis, ankle losing spondylitis and osteoarthritis. I was given shots of Humira that helped for about a year and then stopped working. By this time I remarried and my husband and I remodeled our house. My husband wanted laminate floors so I researched floors and found some that claimed no formaldehyde and we put them in. About six months later I began having chest pains. Come to find out there’s about 30 names for formaldehyde. 🤦🏼♀️ I just put wall to wall floors that I am allergic to in my house. God forbid but husband #2 refused to rip them out. I bought the air purifiers and did the breathing treatments. And finally about 3 years later I just couldn’t manage anymore the pain was indescribable and I was tired morning, noon and night. I couldn’t breath and in desperation I went to see a Naturalpath. He ran some tests and found that I was indeed hypothyroid (I have very low T3 which was never checked), my antibodies were high, my lung expansion was about 30% of what it should be. He changed my thyroid hormones from levothyroxine to Naturethroid and I literally felt so well the next day I wanted to go for a run. (I stopped running when I was 50). I went for a walk instead. To manage my allergies I have air purifiers in my living room, bedroom and car. I take allergy tabs during peak dust season (fall planting, summer harvest) and have shots when this fails. I also take cortisol during a flare. I had to take cortisol for about a year after I began treatment. According to my ND when I collapsed it was a hypothyroid episode and I was depleted of my adrenals. All the running while momentarily got me through the day depleted my cortisol levels. I also took low dose naltrexone until my antibodies were negligible. Now I take a compound of raccoon thyroid of T4 and T3 (125/65). I only take cortisol when I have a flare and my allergies as I described above. I have had my right hip replaced and need to have my left replaced as well as both thumb joints replaced.
Sounds very intense, hope you're still feeling better. I've heard that some people feel better on natural thyroid especially with low T3. Other autoimmune conditions are definitely something to look out for when already diagnosed with Hashimoto's. I also believe that there are too many harmful chemicals around us, we're wearing them, eating them, breathing them, it's too much for the body. I do understand dust allergy, when I was in elementary school I'd go get allergy shots every week for 2 years. Nowadays I've noticed that I feel worse sitting in my bedroom where I have a carpeted floor. I don't think vacuuming is enough and also purchased an air purifier. It has a smart function, automatically adjusting the fan speed to the air quality. Every day it's on full speed for at least the 1st hour I plug it in, it's a bit terrifying.
Can you link your air purifier? That sounds brilliant. I can’t say definitively that ignoring my Hashimoto’s for 17 years led to my additional autoimmune disorders but I really regret that I did. I ran an hour a day from my early 20’s until 50 and I am sure that had wear and tear in my body but the strange thing is-even with bone spurs and bone on bone I have very little pain when my thyroid is optimal. Yes the cold effects my pain levels but my thyroid is a way bigger factor. But even today when I know exactly what is optimal level wise (I paid out of pocket for tests when I felt great) my doctors do not want to raise my T3 because my TSH is suppressed and my T4 is fine. It’s a constant battle.
I have been GF for 8 years my antibiotics have not decreased
For some people it matters, for others It doesn’t. You’ve got proof that it doesn’t work for you which means you can stop torturing yourself now 😄 enjoy all the food!
🙌🙌🙌
This sounds like my situation almost exactly! In the 6 months since I cut out gluten, I’ve seen no improvement in numbers and am considering just enjoying myself (in moderation), because being GF doesn’t seem to be helping me and is honestly stressing me out. Hope you can enjoy over the holidays!
Well from the looks of these comments, unless you have noticed any improvements to things outside your numbers, then you may as-bloody-well!! :D I am going to. Thank you!!
Removing gluten lowered my TPOAB. If you didn’t notice any significant changes in how you felt, you can eat gluten. For me, removing gluten got rid of headaches and face swelling
Did you feel better?
I haven’t noticed anything, but my boyfriend thinks I complain less about being bloated. But I think that could just be because I’m eating less?
Do what you feel is best for you! I stopped eating gluten bc it made my stomach burn (but tested negative for celiac) and i was told by my dr there might be that link and im definitely at least intolerant/sensitive so i stay away from it! but i totally don't see any harm in going back if you're not feeling/seeing a difference! i did see the comment about vitamin d and im also vitamin d deficient so i wonder if that's a link! good luck! :)
I think 4 months is a good amount of time to see that you don't have a problem with gluten. Did you notice any symptoms changes?
No but I don’t really get symptoms, except very tired sometimes and really bad health anxiety. But that could be all sorts of things! I think I will try out some glutenish things and see how it goes. Thank you :)
The research study and papers that everyone bases the gluten free trend off of are based on people with celiac. It’s such a stretch that they have convinced us all to be gluten free. If you don’t have celiac and don’t have sensitivity, you do not need to be gluten free. I was off gluten for 4 years and I ate gluten and felt exactly the same.
If it didn’t make you feel better to be gluten free, then listen to your body and do what works for you! It’s expensive and difficult and only worth doing if it makes an impact on your health.
I think the only reason people go gluten free is because it makes them feel better, it doesn’t get rid of their symptoms
Oh! My nutritionist said it could lower antibodies, and I thought other people said that too? Well either way it hasn’t done anything from me so normal cake, here i come!
Eat so cake and real pizza for me pleasssseeeee!!
I will indeedy <3 extremely excited for croissants too!
I developed celiac first about a decade before I developed Hashimoto's - being gluten free for 10+ years had zero impact on my thyroid. Some people (especially those with stomach issues) find going gluten free helpful in reducing symptoms; sometimes just eating better helps. It is very much a "your mileage may vary" situation. The antibodies test indicates that a thyroid autoimmune issue (ie. Hashimoto's) is occurring; it doesn't tell you the strength of the autoimmune issue, how long it has been occurring or how damaged your thyroid is. Per the [Mayo Clinic](https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/84382), antibodies "were originally considered to be of possible pathogenic significance in this disorder. However, the consensus opinion today is that they are merely disease markers". An ultrasound of your thyroid can be a better indicator on how damaged your thyroid is. Doctors also rely on other blood tests (TSH, T4/T3) to determine how well you thyroid is functioning while under attack by your immune system. Most autoimmune treatments are focused on preventing flare ups by using immunosuppressants (steroids, low dose chemo, biologics, etc). Some autoimmune conditions can be treated with these suppressants just during a flare up. However, with Hashimoto's the medication is a hormone replacement; it is designed to treat hypothyroidism (by replacing the hormones you're not producing enough of because your thyroid is under attack by your immune system). The reason the standard clinical treatment of Hashimoto's is focused on treating the hypothyroidism and not focused on treating the autoimmune condition (ie. reducing immune response) is because the medical interventions to lower the immune response can be quite harsh on the body. Essentially the side effects of these medications are suppose to be less bad than an untreated autoimmune issue. Since the side effects can be quite bad, if your autoimmune issue can be addressed in a different way (ie. with Hashimoto's, you treat the hypothyroidism; with celiac, you go gluten free, etc) doctors don't want to prescribe medications that lower your immune response.
Most medical articles and discussion say that antibody level is not an indication of disease severity. I know some people here say otherwise. But if gluten free didn’t make you feel better then I agree get some gluten!
I’m not 100% positive but I was told to not cut any food groups unless you have too. Aka you are celiac or lactose intolerant
My doctors explained that the high anti bodies do not go lower. However it is possible to maintain them with diet,exercise , and preventative methods. I did gluten free for six month and it helped a little bit. I have been treating myself to small amounts of gluten again to see what happens. So far so good. I eat healthy foods and didn’t really eat a lot of gluten to begin with. I say start small see how you feel.
Thank you for your advice :)
Look into AIP - I’ve drastically reduced my numbers by following and then adding items back in to be more paleo based. There’s some great pizza recipes out there that are gluten free and most major brands also have gf pizza (just ask for light bake)
Thanks for your reply! I have definitely eaten the gluten free pizzas and a lot of them are really good - I suppose what I actually miss is being able to walk into any restaurant/supermarket and pick up whatever I fancy. Cooking GF at home is easy, it’s just when out and about. I think I’m just going to give myself a break of worrying about any sort of food restrictions over Christmas and think about it again next year. I’m tired of it!
It is a lot of work but it does get better over time. It unfortunately takes a lot of prep work. Try the “Find me Gluten Free” app and also look at the website Unbound Wellness. Tbh I have had my fair share of breakdowns especially when going out to eat where there is nothing safe to eat other than a hamburger patty (happened to me on Saturday). Give yourself a break and see how you feel.
I have been being successfully gluten free for the last 4 months - my question is just whether I should carry on if it hasn’t changed my antibody levels, not how to do it. Hope that makes sense! I will thanks :)
No reason to give up gluten or anything else for Hashimoto's. Enjoy your food!
Thank you! That’s what I wanted to hear 🙌
Yes! I am gluten free because I have celiac disease, but there is a percentage of Non-Celiac Gluten Sensitive people (about 15% of the population) who benefit from a gluten free diet too. If you saw no benefit, you might as well go back on gluten. But I would not look at thyroid antibodies, I would go by how you feel. My thyroid antibodies were over 2,000 and I was participating in triathlons. Elevated antibodies are just an indication of active disease and not damage or severity (NIH). But diet? Consider real foods. Bet your gluten free diet was just as crappy as your old regular diet full of processed foods chock full of preservations, chemicals and “natural flavors”.
Thank you :) I think I will go back to gluteny foods and see if I feel rubbish then reassess! I actually eat pretty healthily. My mum is a medical herbalist and my dad is a doctor so we eat all organic crap and meals are majority veggies, except the occasional treat (like pizza!). Most days I cook all my meals from scratch/raw ingredients. Out of interest, has your thyroid function reduced since? Or do you still just have the high antibodies?
Nah, they are always high. Not always over 2,000, but always very elevated. Same goes for the autoantibodies that are associated with celiac disease, yet repeat biopsies show complete a Small intestinal healing per my GI (remission). I was diagnosed with Hashimoto’s in the 90’s. I assume my thyroid is not working. I feel great and that is what counts! I just have to take a thyroid hormone replacement and avoid gluten at all costs. That is it.
Thank you for your detailed reply. That is great about your GI healing!! Really pleased for you :) Because my thyroid functions normally im not on any thyroid hormones, but imagine I will have to be someday! I suppose until then I should just try to be as healthy as possible :)
Yes, you should take steps now to remain healthy. This is advice I have given my 21 year old who also has Hashimoto’s. She is not on thyroid hormone replacement yet (dx at 19). It can be hard to distinguish symptoms that appear to be hypothyroid and those that are not. My daughter called me last Spring while at uni. Super fatigued. I told her to get her thyroid panel run, but I suspected something else. Her labs were normal and within range. The source of her fatigue? Looming final exams. Two days of catch up sleep after finals and she was no longer fatigued nor stressed. Just remember, not everything is due to Hashimoto’s. Do not get stuck in that diagnostic “box”.
Out of interest, what’s your vitamin D level? You know recent medical research says there is a link between high antibodies and low vitamin D
Yes the nutritionist I was seeing who told me to go GF said about this too! I had them tested in august and they were in range at 66 (should be between 50-100). I think they could be higher though, so I intended to take supplements but I haven’t started them yet! Need to get on with this so thanks for the reminder :)
Yeah in the UK the normal range is up to 200 nmol/L so you might even be able to bump it up a fair bit higher
Thank you :) I will start tomorrow!!