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To Biospsy Or Not To Biopsy? That Is The Question.


bahstonsox

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bahstonsox Newbie

I just got my Enterlab results this past week and have started a gluton free diet. I am wondering if I should wait, continue to eat gluton and go for a biopsy?

Is there any benefit outside of peace of mind to a biopsy? (Insurance etc..)

Is the procedue dangerous in any way?

Should I just consider my results below from EnteroLab as final and just continue my gluten-free diet without ever doing a biopsy?

Any advice would be great:)

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Anti-gliadin IgA 14 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 11 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow


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Looking for answers Contributor

I'll let someone else chime in on your genes. If you have a celiac gene then I would probably have the scope done. It might be needed for the future to get the kind of monitoring my your doctors that you deserve.

RoseTapper Newbie

For starters, the gene test is done to RULE OUT celiac, not to rule it in. Because more than 30% of the population has either or both DQ2 and DQ8, doctors use gene testing to rule out whether a person has celiac or gluten sensitivity. Being positive for either gene just means that you have the disposition to become a celiac, but that might never happen.

Dr. Alessio Fasano, one of the leading experts in celiac disease, recently spoke at a celiac conference at Stanford University. He stated that he is about to publish an article that informs doctors and patients that a biopsy may not be necessary for a diagnosis of celiac. He says that there are five tests for celiac, and if you are positive for FOUR of them, you don't have to perform the fifth--so, because biopsies are notoriously incorrect, he says that the biopsy should be the test that is not done. You see, many doctors don't know how to perform one correctly to test for celiac, sometimes the damage is beyond the reach of the scope, and oftentimes the pathologist is not trained well enough to perform the pathology. Therefore, if you 1) have symptoms, 2) have one or both genes, 3) have a positive blood test for celiac, and 4) the symptoms resolve on a gluten-free diet, BINGO! You have celiac. No need for a biopsy.

Skylark Collaborator

You should continue to eat gluten and go for a proper celiac blood panel from your doctor. Enterolab results are not validated well enough to make any conclusions about celiac disease from them.

Ahorsesoul Enthusiast

It is a personal choice.

With the insurance, they really want to know what illnesses you have so in the future, if you change insurance companies, they could refuse to pay for previous documented problems. On the other had, without the testing insurance companies can refuse to pay for some treatments because it's not documented that you have a disease. It is set up to the insurance companies advantage, not the patients. Catch 22.

Not to say that you shouldn't push for testing. Some people need that hard-copy diagnosis to avoid gluten. Something tangible could help. You need to decide if you need an authority figure to tell you to go gluten free or if going on the diet and feeling good is enough for you.

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  • Posts

    • Pinkdoglady
      Thank you everyone for your answers, they were all very helpful, and some very useful links. I am rethinking the value of having the biopsy as I’m not sure it will give any actual benefits. 
    • trents
    • Nikki03
      Ok Ty i have a dermatologist so I’ll also discuss this with her as well as the new GI when I get in ty again so very much!!! Hope I get answers soon I’m sick of being sick every single day not even able to get my normal task done I feel so horrible. Appreciate all the info!
    • trents
      There is also something called "seronegative celiac disease" in which there is damage to the villous lining of the small bowel but no celiac antibodies are produced by the immune system. It's not very common and there can be numerous causes including infections, some medications and even some nongluten foods.  If you have dermatitis herpetiformis, that is proof positive you have celiac disease since there is no other known cause for it. If you get it biopsied during an outbreak it can be used to establish a diagnosis of celiac disease, therefore. But not every dermatologist knows how to biopsy dermatitis herpetiformis correctly and it can be difficult to get an appointment with one on short notice.
    • Nikki03
      Ty very helpful I’m in the process of getting in with a new gI doctor and will ask more about all that then and yes the rash is exactly like that. I have a half cousin with celiac but that’s it in my whole family and idk if that matters as I see it is hereditary and others say the the only in the family with it. Either way this was very much appreciated ty again. 
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