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Blood tests vs biopsy


Dp0155

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Dp0155 Rookie

Hi guys, 

I last week received diagnosis of celiac via blood tests and what the dr described as “pretty much 100% certain you are celiac as we don’t usually see numbers like that”. I suffered from severe symptoms nausea , vomiting , stomach pains , bloating. I dropped 6kg in weight rapidly and my state was awful to say the least especially as an advid athlete. 

I was advised by the dr to go gluten free immediately and the difference has been astounding. I can train again with increased strength , I can get outta bed some days I just couldn’t , no more nausea ect. I’m also on vitb12 and iron pills as I was also malabsorpbing. 
 

I was advised follow up appointments would be made and I now have an appointment with my dr to discuss a biopsy. I mean as I understand it’s the gold standard for testing in adults but my dr seems to be convinced I’m celiac, so it did take me by shock when she said once the biopsy date comes through I would need to eat gluten again for 6 weeks. Like what am I meant to do be happy with feeling horrendous again for 6 weeks and get weak ! Seems so counter productive to me. I’m just wondering if anyone else has had Similar issues and if I should contest a biopsy or not ? 
 


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cyclinglady Grand Master

While I think an endoscopy to obtain biopsies can be very valuable (benchmark), getting one now during this pandemic seems risky.  Your blood tests were high and you responded to the diet.  You would have to do a gluten challenge of 2 to 4 weeks (for endoscopy, longer for blood tests) which can be pure misery once you have been gluten free.  If you need a solid diagnosis, consider waiting until this crisis is over.  In the meantime, in six months, repeat the blood tests to see if they are trending downward.  Consider a genetic test too.  Many doctors will give you a formal diagnosis based on all these results.  

  • 1 month later...
Larzipan Rookie

Hi there, I'm not a medical professional but I had a very similar experience. I got a very high result on my blood test and my gastro doctor thought it was pretty definite that I had Celiacs Disease. They wanted me to do a colonoscopy and an endoscopy to 100% confirm it, which I could not afford so I turned it down. I've been eating gluten free since November and all of my symptoms have gone away. I feel very confident that I have Celiacs even though I didn't get a biopsy. I no longer have nausea, chronic diarrhea, migraines, anxiety/depression, and terrible joint pain after quitting gluten. I personally don't think it's necessary to get a biopsy if you can feel your body healing itself while being gluten free. I don't think it's worth the pain of eating gluten again for weeks to get further proof that an ingredient really hurts your insides, but that's just me haha.  

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      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
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      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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