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Seeking Advice About Diagnosis


Brittm0807

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Brittm0807 Newbie

I’ve had issues for many years with my digestion and abdominal cramping/diarrhea. I have been told for so long that I have IBS, but recently my symptoms seemed to be getting worse and more random so I went back to the doctor for additional testing. The doctor ordered multiple blood tests and also stool tests. One test was the TTG-IgA test for celiacs disease, which I had done back in October and tested negative for. This time, the test for celiac came back positive, but I also tested positive for a GI bacteria that I seemed to have picked up in my recent travels to Portugal. I’m curious if there’s any possibility that the bacterial infection would have given me a false positive for the celiac test? Celiac makes sense based on the symptoms I’ve had for so long, but I can’t help but question it with having multiple diagnoses and a negative test last October. I know I can move forward and do the endoscopy, but am also happy to just try being gluten free and see how I feel. Thoughts? 

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trents Grand Master

There are some things that can generate positive tTG-IGA values. Crohn's disease, some tropical parasitic infections, some medications and even the dairy protein, casein,  in some people. You can develop celiac disease at any time in life. Some experts believe that gluten sensitivity (NCGS) can be a precursor to celiac disease. You can trial gluten free eating and see if your symptoms improve. But keep in mind that if you go for testing in the future, either antibody testing or biopsy, you would need to go back on regular amounts of gluten for weeks or months leading up to the testing in order for it to be valid. 

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Brittm0807 Newbie
2 minutes ago, trents said:

There are some things that can generate positive tTG-IGA values. Crohn's disease, some tropical parasitic infections, some medications and even the dairy protein, casein,  in some people. You can develop celiac disease at any time in life. Some experts believe that gluten sensitivity (NCGS) can be a precursor to celiac disease. You can trial gluten free eating and see if your symptoms improve. But keep in mind that if you go for testing in the future, either antibody testing or biopsy, you would need to go back on regular amounts of gluten for weeks or months leading up to the testing in order for it to be valid. 

Thank you for your response!! Glad to know that the bacterial infection likely didn’t offset the results. I’ve been suffering so long and I just want something to work!! Hopefully removing gluten from my diet will be that thing. Still waiting on some other tests to rule out crohn’s. 

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Awol cast iron stomach Experienced

Welcome to the forum Britt. I am glad you have a Dr. looking into this for you further. Trents gave you excellent information. I just wanted to chime in as I was long misdiagnosed IBS by symptoms only. I am diagnosed NCGS with additional food intolerances. I have a cousin who is Celiac.  I was unable to complete my 2 week gluten challenge when I had my scopes. I hope your tests get you some answers, as Trents sometimes NCGS is determined, and still requires a gluten-free diet. There are a few of us on here who were diagnosed IBS, as testing for Celiac was done less in the past, and thought rare. I can share I found the forums very helpful. I live as a celiac despite being NCGS, as the Celiac Lifestyle of a gluten-free home, no restaurants, gluten-free products is what keeps my multiple symptoms,  and pain at bay. 

I wish you the best on your path to diagnosis enlightenment, and healing.

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    • 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.
    • StrongerThanCeliac
      Hi,  I’ve noticed that it usually takes me about 5-6 days to recover from a glutening. I was just thinking and maybe I’m going crazy. Long story but I wasn’t able to brush my teeth for a couple days after being glutened. Is there a way the gluten could be like stuck in my teeth still and still causing some sort of reaction because I waited too long to brush? Or is that insane
    • cristiana
      @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
    • gemknorodo
      I wonder if the tTG-Iga result isn't back yet as there is nothing next to that one, perhaps it takes a little longer.  
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