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Positive biopsy, negative blood test


Mrami023
Go to solution Solved by trents,

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Mrami023 Newbie

I was referred to a gastroenterologist due to me having Diverticulitis, but since i had lots of other symptoms mainly unexplained nausea & vomiting every time i eat out they did an endoscopy and i was not aware that its recommended to be eating gluten before endoscopy if they suspect celiac since they didn’t with me, i normally was already cutting gluten without really trying since it makes me sick but never knew about gluten allergy, well they did a biopsy and they suspected i was on the early stages of celiac and the GI send me to get a blood test to confirm when we got the results they where negative for celiac, and told i could eat it but my primary care doctor & nutritionist told me they should of diagnosed me with celiac because the endoscopy is the gold standard to diagnosed celiac disease & was not eating enough gluten so im very confused and wanted to see if anyone have experience this before and thinking if i should look for a second opinion. Thank you.


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Mrami023 Newbie

Forgot to mentioned that after learning of celiac disease i have lots of the symptoms 

 

  • Solution
trents Grand Master
(edited)

Welcome to the forum community, @Mrami023! Your experience is very common. Many people don't get tested for celiac disease until after they have started eating gluten free or at least started cutting back on gluten. They don't necessarily know any better and no one has told them that this may invalidate testing, either the antibody blood testing or the scope/biopsy or both. As a matter of fact, many doctors neglect to inform their patients of this when testing for celiac disease.  Life happens. We do  things in the order that makes sense to us at the time based on the knowledge we have at that time.

Yes, the endoscopy with biopsy is considered to be the gold standard of celiac disease diagnosis. So, given the results of the biopsy and the sequence of events that led up to it, it makes sense to conclude that you have celiac disease. If you are feeling compelled to go through with proper blood antibody testing to confirm the biopsy results, you would need to resume eating significant amounts of gluten for three weeks or more in the amount of 10g. daily (about 5 slices of wheat bread) leading up to the day of the blood draw.

Your other reasonable option would be to assume you have celiac disease and commence gluten free eating whole heartedly and see if your symptoms improve. I will include a link for getting off to a good start with achieving a gluten free eating status.

Oh, yes. Celiac disease is not an allergy to gluten. It is an autoimmune disorder in which the consumption of gluten triggers inflammation in the small bowel that damages the lining of the small bowel.

 

 

Edited by trents
Almost forgot to include the link I mentioned.
Mrami023 Newbie

Thank you for the response, i will probably do the blood test to confirm later but as for now i will do a gluten free diet i need to feel better, and am just scared to be wrongly diagnosed since i been before with my diverticulitis, with my grandma dying from stomach cancer 20 years ago but no one can confirm if she had celiac disease since im not sure they where testing for that back than and my mom has symptoms but refuses to do the endoscopy & colonoscopy, im just glad i was able to get the doctor to do both on me hopefully this helps after years of having food making me sick without knowing why. Your comment was very helpful and made me feel better about my decision. Thank you

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    • trents
      Welcome to the forum, @ABP! We can't comment on the test numbers you give as you didn't include the range for negative. Different labs use different units and different ranges. There are no industry standards for this so we need more information. If your daughter doesn't have celiac disease she still could have NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x more common than celiac disease. However, there is no test for it yet but it does share many of the same symptoms with celiac disease. Both require complete abstinence from gluten.  It is seldom the case during testing where all tests are positive, even for those who do have celiac disease. This is no different than when diagnosing other medical conditions and that is why it is typical to run numbers of tests that come at things from different angles when seeking to arrive at a diagnosis. It seems like you are at the point, since you have had both blood antibody testing and endoscopy/biopsy done, that you need to trial the gluten free diet. If her symptoms improve then you know all you need to know, whatever you label you want to give it. But given that apparently at least one celiac antibody blood test is positive and she has classic celiac symptoms such as slow growth, constipation and bloating, my money would be on celiac disease as opposed to NCGS.
    • ABP
      My nine-year-old daughter has suffered with severe constipation and bloating for years as well as frequent mouth sores, and keratosis Polaris on her arms. She also has recently decreased on her growth curve her % going down gradually.  After seeing a gastroenterologist, her IgG GLIADIN (DEAMIDATED) AB (IGG) was 22.4 while her IGA was normal. Her TISSUE TRANSGLUTAMINASE AB, IGA was 11.9.  Most recently her genetic test for celiac was positive.  After an endoscopy her tissue showed inflammation of the tissue as well as , increased intraepithelial lymphocytes (IELs) but there was no blunting of the change in the villi.    It seems that every result that we get one out of two things positive rather than all leading to an inconclusive diagnosis. While we do have another appointment with the doctor to go over the results. I'm curious based on this information what others think.    I would hate to have her eliminate gluten if not necessary- but also don't want to not remove if it is necessary.    Signed Confused and Concerned Mama
    • 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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