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Immune Problems - Does This Match Others Experience?


healthychris

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healthychris Newbie

Does this match with anyone else’s experience?

 

Until I went gluten-free two years ago (something that has transformed my health), I’d been chronically under par for nearly 15 years with recurring swollen neck glands, sore throat, conjunctivitis and exhaustion. I thought this was an immunological problem caused by having toxoplasmosis shortly followed glandular fever in my late 20s.   

 

The crisis point (which led to the gluten-free diet) came after the usual symptoms appeared  towards the end of holiday in France where I had been eating bread at every meal, which was very unusual for me. I developed an odd abdominal pain, which over the next few weeks got to so bad I could hardly walk and I ended up  in hospital on morphine. I recovered by not eating. Over the following months, I relapsed every time I got my appetite back. During that time, my weight dropped drastically and I developed a bend in my spine, I guess  from malabsorption. Doctors were confused. I cut out gluten from sheer desperation in case it helped. By the time an endoscopy and biopsy appointment came through, I was perfectly well (and had been pretty much gluten free for over the 6 weeks necessary). There was visual erosion of the duodenal folds but the biopsy was normal.

 

Like many people who are not 'officially' coeliac I struggle at times to not have a proper diagnosis but  feel so healthy now and the ill- effects when I do get accidently 'glutened' are so bad that I don't feel there is any doubt about avoiding gluten.


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ccassid1 Newbie

This sounds somewhat similar to my case. 

 
I'm a active 42 year old male and since my teen years I had chronic fatigue, sore throat, swollen glands in my neck that would come and go (more coming than going in the last 10 years). I have been to no less than 8 ENT's and even had my neck glands biopsied (once at 21 and once at 31), both times they both came back as normal reactive glands, but there was a mystery to what they were reacting to? Every time I went to one of my many family docs, they said it was just allergic rhinitis and prescribed a steroid and a antihistamine (the steroid used to work a little, but the antihistamines never worked).
 
I have been to rheumatologists, oncologists, infectious disease docs, had numerous cat-scans, mri's, you name it and I had it! Most doctors would prescribe antibiotics, allergy meds and some even wanted to put me on antidepressants and anxiety meds!
 
Last year I asked my doctor about an allergy to wheat because I like my micro-brews; he said there is a blood test for a disease called celiacs, but I didn't need it because I wasn't having any stomach issues....Fast forward to a couple of weeks ago and I went to the family doctor with major upset stomach, back pain, rib cage pain and gas issues (along with my "normal" tennis ball-sized neck glands), and he said I probably needed my gallbladder out?? Before I went to that appointment I did a little research on celiacs and demanded a blood test for it and sure enough it came back positive!
 
I'm almost positive that celiacs was my problem the whole time. I'm in my first week of being gluten-free and I'm not feeling better yet, but my issues have been going on so long, I guess I will have to give it some time to see improvements. I'm so frustrated, but I'm happy to finally have a diagnosis I'm looking forward to feeling healthy again....

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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.
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      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. 
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      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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