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Dont Know What To Do


Conec

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Conec Newbie

Hi everyone. I'm new here and I wanted to talk to people here because I think I might have celiac disease. I have had various different symptoms all my life but over the last few weeks something has changed. Over the last few weeks I have had strong pains in my stomach.

I dont really know if anyone can help me here but I thought I could at least talk about my symptoms and see what people think. I'm aware that nobody can diagnose me here but I need to talk.

I usually get really strong cramps as soon as I finish eating my breakfast and then I usually have to run to the bathroom where I have an urgent need to pass a movement which varies between diarrarehia and just being soft but its always quite explosive.

I always feel full of gas. I have a very noisey stomach at all times, its actually embarrassing (quiet waiting rooms etc).

About 3 months ago I got this strange itchy burning rash, only on my wrists which were these tiny little blisters that would heal and come back again. I went to the doctor and he just told me I was allergic to something and gave me some cream. He couldnt tell me what I was allergic to. The rash seems to have healed now after using a strong steroid cream.

Then there was something else that caught mt attention, the description of Neuropathy - problems with nervous system not related to the spine. I have chronic pain with the nerves in my neck and my legs are constantly cramped and painful.

I have always suffered from headaches and migraines.

I have suffered from depression.

Another description was dental problems, the enamel just seem to ware away so quickly.

I have also been skinny but I have a pot belly.

So it just seems to me that all these unrelated issues I've been dealing with all my life seem to all come together with celiac disease.

I even got an allergy test done at a health food store a few years ago because I was so sick of my stomach and digestion feeling like there was a storm going on in my insides.

I wanted to ask advice because basically my doctor sucks, he plies you with perscriptions and shoves you out the door. I can imagine how I might find it quite difficult to convince him that I'm not making this up and that I would like to be taken seriously. Does anyone have any advice on how I can adress my concern with a doctor whos too busy to listen?

Any advice greatly appreciated. (sorry about the long post).

Conec - Ireland - age 30

Anyway thanks for reading.


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Ahorsesoul Enthusiast

Go gluten free and find a new doctor. I doubt there's a way to convince the doctor unless he's open minded enough to do some research about celiac disease.

hannahp57 Contributor

I would go both gluten and dairy free. Go back to a safe diet of whole inprocessed foods. rice, corn, veggies and fruits, meat (plain or with little seasonings like salt and pepper). Everyone will recommend this as a good idea. you can see how much better you feel and then after a few months (it will take time and patience) you may start adding things in one at a time to see what the problem is.

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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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    • 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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