In the process of being diagnosed...

[bahrbdoll 0]

Ok, so I talked my gastro Dr. into doing genetic testing to rule out celiacs- Because of my gastric bypass he was not able to do the standard biopsy. I thought the gluten free diet was slowly improving symptoms. It's been over 4 mo. He said he was almost certain it wasn't celiacs- told me to eat what ever I wanted while we waited 2 weeks for the results. So, I thought ok it's been 4 mo. maybe if it's not celiacs my system would be "healed or better" so I had 15 pizza rolls- almost died over the next 4 days. took my stomach a week to get off the roller coaster ride. Who knows? no one I know! so this is what his nurse sent to me- Alleles detected: HLA DQ1 5 detected/less than 0.1xRelative Risk: Extremely low..........What the crap is that? Is it some confusing way to say it was detected but not enough to be positive? could some one help me w/ this. Thanks

[ravenwoodglass 1,345]

You can't rely on gene testing for diagnosis. IMHO. If you ask for a copy of the tests and post them there are a couple folks with a great deal of knowledge that may be helpful with them.

How are you doing on the diet? Have you noticed any improvement? You said you thought you might have healed so you tried the pizza rolls. I take that to mean you were feeling better. Go back to the diet and then when symptoms stop ff you want to challenge the gluten-free diet what you need to do is to challenge it with something that is just gluten. I used cream of wheat and triscuits.

[nora_n 60]

Could be DQ 1 on one allele, and 5 on the other allele.

But that could mean that it was tested by Quest diagnostics, and the last one posting with quest results, had both the alpha and beta chains. And, there was half a celiac gene in the alpha chain.

I think quest would have reported that nowadays.

Well, turns out there are several DQ1 (Both 1 and 5 are DQ1) on the celiac or gluten free forums, and they are even more sensitive to gluten than the DQ2 and 8 celiacs once they react to gluten.

Dr. Hadjivassilou found that about 20% of his gluten ataxia patients were DQ1.

And, read this one:

http://www.celiac.com/articles/1101/1/Glut...ewey/Page1.html there is a percentage of diagnosed celaics wihtout DQ2 or 8, and certainly lots of people with non-celiac gluten sensitivity.

For the genes go to wikipedia and type in HLA DQ and there is a chart there.

nora