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New Here----possible Symptoms?


dorothy13

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dorothy13 Newbie

Hi, I found this site today in my quest of trying to put "puzzle pieces" together. I'm 40+ years old.

I began experiencing fatigue 12 years ago.

Since then, I've been diagnosed with:

autoimmune hypothyroidism

morpea (autoimmune skin disorder)

severe vitamin D deficiency (had rickets during early childhood but wasn't treated)

osteopenia

migraines (averages 5 a month)

I also have chronic neck pain, muscle spasms/twitches in my middle back, middle back pain, occaisional muscle spasms in my thigh, abnormally low white blood cells that haven't been investigated, tiny white spots on my arms (I suspect vitiligo), swollen thumb joint, bloating/abdominal pain and hard stools come and go depending on my food choices, mild redness in face which worsens under heat/poor sleep/food choices. My massage therapist says my back muscles are consistent with those she treats who have fibromyalgia.

About 9 years ago I went through a long period of reoccuring sore throats, exhaustion, brain fog, flu-like pain and symptoms. Going on a low-glycemic diet and mild exercise program really helped my symptoms. I particpated in celiac testing research (out of Maryland, I think) and the test came back negative. I've heard Dr. Kenneth Fine speak as well & he makes a lot of sense. I also went gluten-free for awhile and felt better.

I'm considering going gluten-free again to see if I can stop the migraines, spasms, back pain. Going gluten-free is such a huge commitment and I wanted to see if anyone here can relate to the symptoms I've listed.

(FWIW, I'm now on a maintance dose of prescription vitamin D 50,000U every 2 weeks and daily take 1000mg calcium/400IU vitamin D/400 mg magnesium. Finally, my bone density improved. It didn't improve on weight bearing exercise. My vitamin D is now in normal limits. I'm tested every 6 months.)

Thanks for any help!

Dorothy


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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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