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Celiac or Not??


MaryIsa

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MaryIsa Newbie

Hello, I am very new to all of this so please bear with me. After about a year of GI issues and random testing, I was given an Upper GI and told my stomach was irritated and to go gluten-free then be re-tested. On my retest, the results said my stomach had healed and looked good, yet said they did not see celiac evidence. I was extremely confused by this. To me, if my stomach healed from being gluten-free, then gluten was my problem. Anybody else have any idea on this strange result? 


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cyclinglady Grand Master

Yeah, your GI seems like he does not know anything about celiac disease.  Run, don't walk, to another GI for a consult.  If celiac disease was suspected, a simple blood test could have been ordered prior to the endoscopy.    Even the endoscopy without the blood test  and before recommending that you go gluten free, the blood panel should have been ordered that day.  

You should get all copies of your lab tests and medical records to share with your new GI and possible attorney.  You should always keep all your medical records.  You are the customer and it is you health.

At this point, since you have been gluten free, it might be difficult to get a firm diagnosis because all celiac tests require you to be on a gluten diet.  Maybe some information is missing here.  Another reason to get these medical records.  

I wish you well.  

MaryIsa Newbie

Thank you so much, I really appreciate the advice!! I have an app in Dec with a different doctor so hopefully it will give me some clear answers! 

Victoria1234 Experienced

Did you have any problems before going gluten-free? Did they resolve when you went gluten-free? 

MaryIsa Newbie

I was having lots of abdominal pain randomly and suffered from terrible migraines at least twice a week. Since going gluten-free, my migraines are much better. Stomach issues still occur once in a while. My biggest problem is that when I eat an actual meal, I have a BM and then am immediately starving again. This problem is stil there, but I'm happy to at least be rid of the migraines! 

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    • Scott Adams
      I guess using "GF" instead of "PL" would have been too easy! 😉
    • trents
      I was wrong, however, about there being no particular health concerns associated with high total IGA: https://www.inspire.com/resources/chronic-disease/understanding-high-iga-levels-causes-impacts/ So maybe the physician's "borderline" remark is relevant to that.
    • trents
      Sometimes that is the case but what is curious to me is the remark by your physician about being "borderline". I assume he was referring to the total IGA score but it just seems like an irrelevant remark when it is on the high side rather than being deficient.
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      @Gluten is bad Hi!  I just caught this post, and am writing on the off-chance that you might be based in the UK.  If so, I was told some years ago by a pharmacist that in the UK that if a medicine has a Product Licence printed on the packaging, which will appear as the letters PL plus a long number.... for example....  PL 4525908 (making that number up!) it will be gluten free.   I have just checked this on an NHS website, and indeed it appears to be true.  According to the same website, all medications prescribed by GPs in the UK are gluten free. https://www.nhsinform.scot/healthy-living/food-and-nutrition/special-diets/gluten-free-diet/#medicines The same NHS website also makes a very good point.  You might take a gluten-free medication prescribed by a GP that might set off symptoms very similar to a glutening.  Like some meds cause stomach pain or diarrhea, but that doesn't mean they contain gluten. Obviously, if you are purchasing medication from overseas, the above might not apply. Hope this is helpful, and that you can get your medication soon - I have an acquaintance who has had to wait some time. Cristiana
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