Coeliac biopsy

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hi, my 3 year old had the blood test that indicated she could be coeliac. Her behaviour is terrible after eating wheat and I know she is not well. I am happy to put her on a gluten free diet now as I am pulling my hair out, but the doc recommends I do a biopsy. Why should I do a biopsy when I know not eating gluten helps?

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  • Posted

    Oh, boy, I can really relate!  My younger son was a bit of a terror at age three, but we didn't find his Coeliac until he was six. I totally understand why you're eager to quit wheat.  But, I have a feeling that you live somewhere that makes a true diagnosis important...as in medical benefits that one can get with the diagnosis but not without. But, also knowing if it's a case of Coeliac Disease through the "Gold Standard" of endoscopy/biopsy will also let you know if your daughter has this auto-immune disease or if it's a different issue such as an intolerance or allergy.  Auto-immune diseases are a different animal in that they could lead to other auto-immune issues. You (and she) will really want to know exactly what happens to her body, not just her behaviour.

    Without wheat, the body may be healing itself, making it harder to detect evidence of CD.  A false positive can be harmful down the road if doctors don't know to look for issues that tend to come with CD.  It could lead her to stray from a strict diet when she's on her own, etc.  Speak to your Dr./surgeon though...you may be able to give her sufficient amounts of gluten in the mean time through other, non-wheat sources such as barley.  Perhaps that won't set her off the same way wheat does??

    I'm sorry your daughter/family is suffering and I hope you have answers and wellness soon!

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  • Posted

    Hi there.

    It is important that your little girl has a biopsy to see if she has coeliac disease. If she just has a wheat allergy the diet and treatment is completely different. If she has undiagnosed coeliac she is susceptible to many other things such as osteoporosis. This is because she will not be able to absorb the nutrients of her food. If the blood test indicates that she has CD the biopsy will confirm it one way or the other. I have CD and was diagnosed in 1998. One of my grandson's had symptoms and had to have the biopsy when he was 4. The hospital team was great with him and he coped really well. When poeple have CD it is lifelong whereas some kids who are wheat intolerent sometimes outgrow it as they get older. Also if you daughter has CD it is not just enough to omit wheat. You would need to contact the coeliac society to find out exactly what you have to do. They are great and helped us a lot in the early days. Good luck. Let us know how you get on.

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  • Posted

    Sorry should have added. If you omit gluten now which seems the easy way for your daughter to feel better the biopsy will not reveal CD and you will have put her through it for nothing. She might still have CD and you will not know one way or another. In other words you will be exactly where you are now !! good luck again
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  • Posted

    Hi

    My son having chronic diarrhea for 7 years due to unremarkable gut inflammation

    they test many biopsies from his intestine through many colonscopies that carried out , but no evidence for food allergy found. Before 3 weeks he did a test of saliva and blood at nutrition Doctor so he found specific wheat protine that made this disorders (Diarrhea) so when he exclude the bread and rice ,his diarrhea stoped

    at the first time since 2008. My opinion is the biopsy not reavel all type of wheat protine so the Lab. with high technic update is the best ?

    My kindly greeting

    Denver,Co,USA

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  • Posted

    Sorry I understand why you wouldn't want to submit your child to such an intrusive test. We managed to avoid it when our 7 year old was diagnosed as her readings on tests were so high. However I agree with advice above. You need to know whether it's coeliac. If it is then you need to be vigilant of the slightest cross-contamination. It's a life style changing diagnosis. But better to know so you Can avoid osteoporosis, cancers or fertility problems. Hope this helps
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    • Posted

      Good advice. Glad you managed to avoid the biopsy, but at least you have a definitive diagnosis from the blood test.
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  • Posted

    yes start test because more specific for wheat sensativity but in addition of blood test

    perform saliva test which more accurate than blood. why:  the coeliac start first discovered at mouth before transfer to blood . this happened with me. No any Lab. can do this but there is a special Lab. do this test through nitrution doctor

    (ND) as that happened with me. The biopsy some for specific wheat sensativity reveal  for Negative as happened with me seven time of colonscopies.

    My wish to heal

    (execuse me for my bad english)

    My

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