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manasota

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Gemini Experienced

You will find that notme! has a very finely tuned sense of humor, which we appreciate.  Doesn't hurt to laugh at things because if you don't, your head would explode!  Ha, Ha!

 

I used to have a Buddha belly but that is long gone.  I have to ask....are you dairy free also?  I know you have cut out a lot of foods from your diet but dairy intolerance often goes hand in hand with Celiac.  It can be permanent or temporary, depending on how your gut heals.  Mine is semi permanent so I have to eat dairy lite.  Dairy will cause bloating as badly as celiac.Really think about what foods you are cutting out and ask yourself if you really need to.  I hate to see people cut out foods that they don't have to because it makes weight gain harder.  But dairy can be a huge problem for Celiac's and I did not discover that issue until 2 years into the gluten-free diet. That might explain the Buddha belly problem.

 

Also, as a fellow thyroid disease sufferer, I know how fatigued and draggy one can feel when the thyroid is off.  That might explain some of your fatigue and body pain. If my thyroid gets too low, I have joint pain in my fingers (I don't have arthritis) and I can barely get my butt out of bed in the morning to go to work.  I will also get sick and I never get sick anymore....only when my thyroid is wonky.  I think part of your problem is that you haven't been able to finely tune food and meds enough yet and it can take a while to do. Things change as you heal so it's very tricky in the beginning to attain balance. You also have to realize that as you start absorbing better, thyroid meds need adjusting.  Then if you get stressed, that can throw things off. We don't have the capacity to have our bodies adjust to stress as well because we have to do it manually by taking thyroid hormone as we don't make enough.  With other people without thyroid disease, their thyroid pumps it out on demand.  It only made me appreciate how well the human body is designed to work...only mine and yours and many other's don't work that smoothly.  Just keep doing the things you have been doing but think about the dairy issue.  Test your thyroid more often and make sure they do a complete panel on you every time until your thyroid is in a happy place and stable.  Not just the TSH but the Free T3 and T4.....always good to know what the actual hormone levels are.  Those are the ones readily available for use by your body.

 

About your eyes.......One of the other AI diseases I have is Sjogren's Syndrome.  It occurs frequently with Celiac and, as you were diagnosed older, odds are it could be a problem.  If a doc has told you that you probably have dry eye, it could be Sjogren's.  Is your mouth dry or do you have a lot of dental problems?  Do you have trouble swallowing food, especially bread?  There is a blood test for Sjogren's so it's an easy test but they are testing for antibodies so it can be like Celiac.....you can test negative and still have it.  Might be something to look into if you have symptoms because the docs won't look for it.

 

That's enough for now and I hope your head isn't ready to explode!  :)   Any questions, just keep posting....... ;)


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manasota Explorer

I don't think my Buddha Belly is from dairy because I was totally off dairy for years & still had the BB.  I have restarted the SCD yogurt daily to get the giant probiotic doses recommended.  The BB has not increased.  (Maybe the SCD yogurt will help.)

 

I don't think I have Sjogren's because my mouth is not dry & I do not have dental problems.  Also, my eye issues are "only" intermittent.

 

My plan is to "just keep going" --like Churchill!  At my next MD appt., I'll get all the bloodwork you all have recommended.  My guess is that my continuing pain & fatigue are from a combo of the Graves and Celiac healing.  I will just keep going!

 

I might mention that my doc gave me zinc to treat the peripheral neuropathy (tingling in extremities) that I was having.  It worked for me!  I almost never have the tingling anymore.  YEA!

 

Just Keep Going!

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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