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Furthing Testing


beach

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beach Newbie

My sister has celiac and my question is this. For the past month I have had nausa and lose stools and a very rumbling stomach, especially first thing in the morning. I also have a lot of acid reflux, nervousness and dizziness (although the dizziness may be from the fluid my doctor said is in my left ear). I also have occassional night sweats and I can't sleep at night. I've also lost my appetite and have lost 7 pounds in the last month. (my doctor said it's just from not eating) He did blood work, although I have not heard back with the results, he said he would run the test for celiac as well. However, because I haven't been eating much I'm afraid the test will come back negative. If it does, should I pursue further testing? My doctor seems to think all my symptoms are related to anxiety. I know my chances of having celiac are only 10% but I'm curious. THANKS!


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lovegrov Collaborator

Top celiac rexperts and the NIH say ALL first-degree relatives should be tested. My whole family did this and my dad, with no symptoms, was positive on everything.

richard

SherriRoy Newbie

Anxiety might be the cause, but it doesn't hurt to check out celiac. I got celiac disease from my mothers half brother...so even though he's distant it is totally possible. Since it is your sister...the blood test is a good idea. I turned out half positive and half negative to the test...so they weren't initially sure if I had celiac, but with the biopsy it did show damage.

You do have a lot of symptoms that I have with celiac disease..and I even have IBS. So all aspects are worth checking out. Once you start feeling better, that might help with the sleeping problems.

Hope this helps,

Sherri

plantime Contributor

Since your sister has it, you should definitely get tested. My sister is taking my biopsy results to her doc and asking for the tests, since celiac is genetic. Your symptoms could be anxiety, which seems to be the diagnosis of choice these days, but they could also be celiac. I went to my doc about a severe headache that originated in my right ear, she said it was anxiety. Two doctors and three rounds of progressively stronger antibiotics later, the deep ear infection finally cleared up and the headache went away. Anxiety is not the cause of everything that ails us!

Carriefaith Enthusiast

You should ask your doctor to get tested for celiac, since your sister has it and because you have a lot of the symptoms. It may be just anxiety but it's better to know for sure.

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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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