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Just Had Biopsy


gabyy

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gabyy Rookie

Hi everyone,

I posted a little while ago, but I'll review real quickly. I have had low ferritin levels for years (as low as 2, never higher than 30 even while taking iron). I initially had a blood test done for celiac and it was negative. My doctor decided that I needed the biopsy done though to be absolutely sure it was not celiac. So I was referred to a gi doc. The gi doctor was great - he definately thought it could be celiac, was also concerned it could be silent chron's disease or silent ulcerative colitis. He did a egd/colonoscopy on me on Thursday. He took several biopsies from the upper and lower intestines. He told me that the his initial thought just from looking at them is that I am negative for any type of stomach/intestinal disease. But he said he needs to wait a month for the final biopsy results. If they are definately negative, he is going to refer me to a hematologist for a bone marrow aspiration. Although I must say I am impressed with my doctors, as they have advocated me getting tests done and getting to the root of the cause for the ferritin problems and I know most people have not had that experience, I am VERY nervous about a bone marrow aspiration. At this point I am hoping the biopsies are positive! Anyone out there been told that the original glance at the biopsy was negative/normal, then have the final report show celiac? Thanks!


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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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