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Blood Test Still + After 10 Months Gf?!?!


jen-schall

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jen-schall Rookie

:( hi, I was diagnosed in December after being gluten-free one month. I continued to be gluten-free and had antibody blood tests re-done in the spring which showed, reportedly, that I was still getting "significant" gluten. I did find out there was barley and oats in a nutrition bar that I had thought was okay previously (because I looked at it so early on in the diagnosis and didn't recheck!)

since that major bummer, I have been SO vigilant. now it is 10 months that I have been gluten-free and my antibody tests still show up as positive! ! !

has this happened to anyone else?

what do I do? I am not eating any gluten- and I know ALL about the hidden places, and I am not taking any risks, and even my make-up is gluten-free, and I don't know what more I can do.

someone please help if you can! I can handle being celiac and going gluten-free but if it never actually gets *better* (although I haven't felt sick at all!!) then what do I do???

:angry: Jen


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FreyaUSA Contributor

I don't know if your doctor has suggested this (are you seeing a nutritionist who is aware of celiac disease?), try documenting every single thing you put in your mouth (including brand names.) From toothpaste to water. Then, have either your nutritionist look at it or post it somewhere so that others who are aware (here on the board? I'm new here so I don't know the procedures yet, but it might help. :) ) Or maybe do both things. Also, where do you work? This may sound silly, but if you work in or near a bakery, you could be inhaling your gluten. Imo, you are getting into it somehow, it just might take some time to figure out exactly how. (And, if you're getting into it unknowingly, chances are others are or will to. Maybe some company isn't documenting their ingredients like they should be. :o )

tarnalberry Community Regular

Well... _how_ high? I mean, if they've gone down 50%, maybe you're body is just slow at healing on this one. If they've gone down 10%, maybe it's time to have the GI dig really deep into those "other reasons" to have a higher IgG that I keep hearing about but have never heard anything _specific_ about...

lovegrov Collaborator

What's still high? One of the tests is very slow to fall. After 14 months of being extremely careful one of mine, I think the Iga, was still one point above the line. My doctor said to continue being careful but that I was doing a good job.

richard

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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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