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New testing and results question


DMarie1017

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DMarie1017 Newbie

Hello.  New here.  Little background, i was sick starting new years with a sinus infection.  Was given augmentin which in turn wreaked havoc on my intestines.  Was tested 2 times for bacterial infections and im on my 3rd round of antibiotics for that.  Follow a bland diet.  In the mean time since i was not getting better (excessive and horrible bathroom issues and everything was making me sick) the dr added a gluten blood test as well.  I have been 'tested' loosley for GI and hashimotos's  in the past by my gyn and was always told negative even though she thought symptomatic.  I do have a large gallstone that is relatively quiet.  While i was eating this bland diet the past 2 months they had me eating basically bread, bagels, pasta which i kept saying made me feel horrible.  Blood work came back again negative for bacterial but he said i need an endoscopy because its looking like celiac (he said he suspected and ran test on a hunch) 

GLIADIN DEAMIDATED AB,IGA  5  Reference Range: <20 (unit

GLIADIN DEAMIDATED AB,IGG  32  Reference Range: <20 (units

TISSUE TRANSGLUTAM AB IGA  1  Reference Range: <4

(TTG) AB, IGG  1 Reference Range: <6

From what i have been reading the deamidated testing is pretty accurate but im curious 1 being out of range and 3 appearing ok, does any one hold more weight than others?  

Since drs have suspected in the past and few symptoms i had been describing even before i was sick he thinks ive had it and when the antibiotics rearranged everything in the gut the 'quiet' celiac was basically 'awakened' and now more obvious (and i had not been seeing a gastro dr before)

Does any of this make sense?  


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ironictruth Proficient

 I would highly suggest making sure you have a celiac savvy GI and a decent endocrinologist.

I have had some positive DGP tests as well and was told by a celiac research center that they are likely to not be as accurate as is portrayed online.

I literally am doing a second lengthier gluten challenge now and driving out of state to see a GI and am waiting AGAIN for another endocrinologist because I have been loosely diagnosed with possible celiac by my 2nd GI (after the first GI said no but forgot to run bloodwork). I was diagnosed with Hashimoto's by an endocrinologist despite having a normal antibody test, and then told by other docs I likely do NOT have Hashi's.

There is nothing more frustrating then feeling like s$#&, thinking you finally know why, then being told it may not be the case. You are left still searching.

Keep eating the gluten. Do not stop until all testing is done. Make sure your doc knows enough about celiac to take enough samples and run all of the relevant bloodwork (your panel should have a EMA test) and get a decent endo for the thyroid.

Good luck!

 

 

 

 

 

 

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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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    • 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
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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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