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CeliacMommaX2

Both parents negative for celiac gene, 2 kids diagnosed with celiac

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We have 2 children diagnosed with celiac at ages 3 & 4.  My husband and I just did genetic testing for ourselves (expecting 1 or both of us to be positive).  We both came back negative!   Any ideas why?  Could our children be misdiagnosed?  Both had elevated TTG & EMA that improved on a gluten-free diet and one had very clear damage on her scope (son had slight damage).  

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CeliacMommaX2,

It is not well known but Milk can trigger some of the same issues especially in children that later goes on to be diagnosed as celiac disease ie. stunted/blunted villi.

Your children being young as they are still (at an age where lactose) can still be a problem for them Milk should be eliminated in their diet to see if Caseins are also causing their antibodies to be elevated.

Here is the research entitled "IgA anti-gliadin antibody immunoreactivity to food proteins" ie Caseins if you read the research link.

https://www.tandfonline.com/doi/full/10.1080/09540100400003204

And I find this often. . . the research is out there like the "X-Files" if you have the time and the interest too learn/look for it.

note this timeline . . .it was discovered 15+ years ago

Received 01 Dec 2002, Accepted 01 Apr 2003, Published online: 11 Oct 2010

And only published in 2010 but still 8 years later this information/knowledge of this knew research is/has not  been incorporated into clinical practice.

I hope this is helpful but it is not medical advice.

I feel your pain. ... I was an ejectile vomiter as a kid due probably to Milk in my diet which  most people at the age of your children tend (unless your Asian/Indian/Chineses etc.) grow out of around 4 or 5 years old.

The other thing that it could be is due to the stunted/blunted Villi your children secondarily due to low B-Vitamins might have developed either Beri Beri or Pellagra.

Both are linked to GI problems in the literature.

see this celiac.com blog post post about B-Vitamins in/with a Celiad dagnosis.

https://www.celiac.com/forums/topic/123208-vitamins-do-we-really-need-them/?tab=comments#comment-998976

Try and read the links if  you have time and want to learn why this can happen and does in a subset of Celiac patients.

I call it a sub-clinical diagnosis because it is not at a level of awareness that the clinician knows to test for it or if they do . . . .the tests results like for the Thiamine deficiency (Beri Beri) the results are indeterminate ie at normal levels but a healthy state for IBS sufferers returning to a normal state after supplementation.  And I believe this is true for many of the B-Vitamins and taking a B-complex 2/day for 2 or 3 months can prove this hypothesis.

Since B-Vitamins are water soluble by nature there is little down side risk to at least trialing a B-complex for 3 months.

I must quit for now but again I hope this is helpful but it is not medical advice I only know it helped me!

Praise bee to God!

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

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It is also possible that family has one of the rarer celiac associated genes. In my family it is DQ9 that is present not the usual DQ2 or DQ8. Doctors don't usually check for that one.

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ravenwoodglass is correct. I tested negative for the DQ2 & 8 genes, but positive on one of the others.. B1 or something like that.  Make sure the complete genetic thing was done, not all doctors request them all and not all labs check them all.

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