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Why Get A Biopsy?


Mayflowers

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elye Community Regular

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

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

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

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

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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    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
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      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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