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MelissaNZ

So what else could it be?

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So my daughter's biopsy came back negative.  Which is great. However, I'm now wondering does that mean something else is wrong causing her to have elevated markers.  I know that biopsy's aren't always correct due to them not being able to test all the intestine (they took 6 samples), however, I guess I have to go with the results as they are presented, but would appreciate your advice on what else you could thinks going on?

Her symptoms are: very small in height, constipation, frequent urinary leaking, bumps on the back of her arms, occasional achey joints and vomitting, but these two things are very sporadic, like maybe once a month. During the 2 month gluten challenge she has developed scaley areas on her chin and eyelid, and had a crack at the corner of her mouth, that's now gone away after being gluten free for a week.

Her results are as follows:

TTG IgA Ab: 15.4 U/ml (<15.0) HH

Deaminated Gliadin Peptide IgG: 17.2 U/ml(<15.0)HH

IgA: 0.7 g/L (0.4 - 2.2)

Endomysial Antibodies: Positive A

DQ2 gene: demonstrated

DQ8 gene: not demonstrated.

So if its not celiacs, what else could be the issue?  The doctors just seem to wash their hands of it and say "it's not celiac disease, the end".  What could be my next steps?  I have taken her to a Natropath who has identified some nutrient deficiancies.  Could these cause the elevated markers?  Or is there something else I should get her tested for?

I'm at a bit of a loss now!

 

Thanks for your help.

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Positive blood trumps negative biopsy. There is no other cause of elevated Celiac panel results. Can you get a copy of the biopsy reports? Some doctors will not call a biopsy positive until the villi are completely destroyed and discount any changes that come before that. Some will even tell a person to go back on glutenand come back in a year or so to retest to see if the villi are completely destroyed yet.

IMHO you should keep her strictly gluten free and let her heal. Being gluten free is not going to interfere with testing for other problems. Then when she has recovered have the celiac panel run again to see if those numbers have gone back to a negative range.

Good luck and I hope she is feeling better soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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