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fedora

Throughly Confused Now

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My DD's test results just came back from enterolab.

Fecal Antigliadin IgA 9 (Normal Range <10 Units)

Her tTg, casein and malabsorption were all fine.

So she has the highest number posible for normal. Their response was that she could eat gluten and retest later, go off gluten for prevention, or go off gluten if she has symptoms.

Her symptoms are mouth sores, delayed growth this year, and horrible mood swings at time.

Her genes are:Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

I am thrilled she tested normal on so much.

We discussed the results. She seems okay with doing a 100% gluten free trial for awhile and then challenge it to be sure. She has been mainly gluten free.

Has anyone else had this? What was the final outcome for you or your family symptom wise and diet?

Thanks


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

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The person behind this page has a DQ1 kid, I forgot if she is DQ1 too. There are several others who are DQ1 and very gluten sensitive.

http://jccglutenfree.googlepages.com/home

Some have a celiac diagnosis, and some not, even though they are very symptomatic from gluten.

I might be DQ1.


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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I was thinking about another problem: Enterolab is not testing the alpha chains, just the beta chains, and thus they may miss the half DQ2 gene that is 0501 in the alpha chain (DQA1 0501) check out thefooddoc's blog where he srites about it in selverl entries.

I am wondering wether the other labs can tell yhou, and I think they report half a DQ2 gene because they test DQA1.

Interestingly, the Wiki article is continually growing I think. Previously they did not ginto such detail with the alpha and beta chains and that serotying is not accurate, only SSP-PCR is almost perfectly accurate.

http://en.wikipedia.org/wiki/HLA-DQ

http://thefooddoc.blogspot.com/2008/02/upd...ac-disease.html

And here http://www.ncbi.nlm.nih.gov/pubmed/12651074 they found three plus 20 DQA1 *01 DQB1 *05 which is DQ5 like your daughter is.

And, Dr. Hadjivassiliou found that 20 % of his gluten ataxia patients are DQ1 like your DD.

I hope this can persuade her that her results do not rule out celiac per se, and certainly not gluten sensitivity or neurological symptoms from gluten.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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Hey Nora,

Thanks for your input.

About the alpha part of the genes(DQA1)...the DQ7 genes are where the alpha half of the half celiac gene is located. But only some of the DQ 7 genes has the corresponding alpha celiac gene. With the enterolab tests you only get the beta part not the alpha part. With the DQ7 genes with the celiac alpha part it is A1 0505. The ones that are not celiac alpha DQ7 genes have different alpha numbers.

Hope that is not confusing. So only people with DQ7 could potentially have the celiac alpha part.

I have DQ2.2 so I have the celiac beta part but not the alpha part since I am not DQ2.5


gluten . . . Kiss my grits!

pork and beef free- 1994

wheat free or wheat light- 2003

gluten free- January 2008

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You have DQ2,2 which is DQA1 0201 DQB1 0202 according to wikipedia, It is DQ2 but not so susceptible to celiac because they do not sit on the same allele or gene, I do not remember which. If they are on the same gene the risk is high.

"Genetic Typing. With the exception of DQ2 (*0201) which has a 98% detection capability, serotyping has drawbacks in relative accuracy. In addition, for many HLA studies genetic typing does not offer that much greater advantage over serotyping, but in the case of DQ there is a need for precise identification of HLA-DQB1 and HLA-DQA1 which cannot be provided by serotyping.

Isoform functionality is dependent on αβ composition. Most studies indicate a chromosomal linkage between disease causing DQA1 and DQB1 genes. Therefore the DQA1, α, component is as important as DQB1. An example of this is DQ2, DQ2 mediates Coeliac disease and Type 1 diabetes but only if the α5 subunit is present. This subunit can be encoded by either DQA1*0501 or DQA1*0505. When the DQ2 encoding β-chain gene is on the same chromosome as the α5 subunit isoform, then individuals who have this chromosome have a much higher risk of these two disease. When DQA1 and DQB1 alleles are linked in this way they form a haplotype. The DQA1*0501-DQB1*0201 haplotype is called the DQ2.5 haplotype, and the DQ that results α5β


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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