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Am I Likely To Be Dx-Ed? Please Help!


Justscared

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Justscared Newbie

 

Panel came back negative (results below). I guess I am now going to take the gluten out for the truly gold standard. It is amazing how many people without Celiac swear they feel so much better when completely off gluten. This has been quite the roller coaster - thank you so much everyone for your support. I did learn a lot - now if only I could figure out how to bake some really nice gluten-free cakes. 

 

 

Component Results Component Standard Range Your Value Gliadin IgA Ab 0 - 19 units 2 Negative 0 - 19

Weak Positive 20 - 30

Moderate to Strong Positive >30 GLIADIN IGG AB 0 - 19 units 2 Negative 0 - 19

Weak Positive 20 - 30

Moderate to Strong Positive >30 Tissue Transglutminase Ab,IgA 0 - 3 U/mL <2 Negative 0 - 3

Weak Positive 4 - 10

Positive >10

Tissue Transglutaminase (tTG) has been identified

as the endomysial antigen. Studies have demonstr-

ated that endomysial IgA antibodies have over 99%

specificity for gluten sensitive enteropathy. Tissue Transglutaminase Ab,IgG 0 - 5 U/mL <2 Negative 0 - 5

Weak Positive 6 - 9

Positive >9 Endomysial IgA, Ab Negative Negative IgA 91 - 414 mg/dL 194

 

 

The final gold standard test (after antibodies) is to go 100% gluten free and see how it goes.  Keep track of symptoms to describe what happened to a doctor later if needed.  Endoscopy's sometime miss damage.  I also believe checking some nutrient levels could help determine how your digestion is working.  Vitamin B, iron, vitamin D, and magnesium might be low if the villi are damaged or you have celiac. 

 

D


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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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