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Why Get A Biopsy?

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elye Community Regular
elye
Posted

We also had a rare experience with a very with-it GP. My dad has had celiac symptoms for years, and he recently had inconclusive blood test results. When he questioned his family doc about having a biopsy, the doc said, "your intestinal tract is twenty-two feet long. Chances are excellent that tiny samples taken from it, even if there are many, will not show damage. There's just too much there to get a full picture". And he proceeded to recommend the gluten-free diet as a diagnostic. Why aren't there more of them like that? :)

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Guest nini
Guest nini
Posted

Vincent, I LOVE your explanation! That's brilliant!

My personal opinion is that the biopsy is too risky, when you can simply TRY the gluten-free diet and see if it helps. You don't have to commit to it permanently if it doesn't help you, but give it a good effort, at least six months. It does NOT have to be expensive, in fact the way I do the diet for me and my daughter, our grocery bill is actually cheaper. I buy very few of the specialty products, but the ones I do buy, I portion them out and freeze things so that they last a lot longer.

Ok, so the biopsy can only confirm IF positive. The diet doesn't have to be expensive, you don't have to commit to it permanently IF IT DOESN'T HELP. But if it does help, you've saved yourself from a costly and potentially risky surgical procedure. You don't need a Dr.s permission to go gluten-free. If you do not have a diagnosis of Celiac on your permanent record, you won't have to worry about being denied health insurance because of a pre existing condition (and before anyone says "oh that doesn't happen, IT HAPPENED TO ME.) Don't trust me. Trust yourself.

Helena Contributor
Helena
Posted

I'm dealing with this very question right now, and I've found the conversation in this thread to be very helpful. Thanks :D

jukie Rookie
jukie
Posted

The positive labs were enough for me, but I have a family history of colon, stomach, and intestinal cancer (coincidence...I think not). Anyway, because of the family history and years of chronic illness, I went ahead with the endoscopy/colonoscopy for my own peace of mind. In the meantime, I'm having my 4 year old tested with Enterolab and will NOT allow an endoscopy for him regardless of the results.

  • 2 weeks later...
KaitiUSA Enthusiast
KaitiUSA
Posted

I don't recommend biopsies because they can rule celiac in but not out. The only reason to get a biopsy would be possibly to see how much if any damage has occured so far into it.

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    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
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      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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