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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Dr. Says I Don't Have The Celiac Genes?
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17 posts in this topic

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Bubba's Mom    103

For the life of me, I'll never understand the genetic testing for Celiac, other than I've read in a lot of places DQ2 and DQ8 are the Celiac genes.

I tested negative on the Celiac panel, but I had been gluten light for a while because I was too nauseated to eat.

I got a very strong positive DX on the results of my endoscope. I was rescoped in December and found to have a lot of damage even though I've been gluten-free for almost 6 months. The GI did the genetic test. He says I don't have Celiac genes. Does anybody know what my gene test means?

DQ alpha 1 01:03,02:01

DQbeta 1 02:02, 06

equivical

Any clarification would be greatly appreciated. :blink:

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ravenwoodglass    1,218

While I am not good at gene tests interpretation I can say that there are more genes than just DQ2 and DQ8 that are associated with celiac. Those are the most common but there are diagnosed celiacs that don't have either, myself included.

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Bubba's Mom    103

Thanks for looking.

It says Mayo Genetic Order

Test name Celiac

The report says: While the patient lacks the gene pairs usually seen in Celiac disease, there are rare exceptions in which celiac disease can occur with only one half of the gene pair.

Method: Low to Medium or High Resolution Molecular test.

Performed by Mayo Clinic Dpt of Lab Med and Pathology. :blink:

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ravenwoodglass    1,218

Thanks for looking.

It says Mayo Genetic Order

Test name Celiac

The report says: While the patient lacks the gene pairs usually seen in Celiac disease, there are rare exceptions in which celiac disease can occur with only one half of the gene pair.

Method: Low to Medium or High Resolution Molecular test.

Performed by Mayo Clinic Dpt of Lab Med and Pathology. :blink:

Perhaps you are one of the (IMHO not so) rare exceptions?

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Skylark    935

Does anybody know what my gene test means?

DQ alpha 1 01:03,02:01

DQbeta 1 02:02, 06

equivical

Any clarification would be greatly appreciated. :blink:

Yeah. It means your GI is an idiot. :blink:

You are DQ2.2, DQ6.3. You have a form of DQ2 that gives a lower risk of celiac disease than DQ2.5 but it still gives more risk than not having DQ2 at all. That's why the test is labeled "equivocal" rather than "negative".

I hope you're off dairy as well as gluten while you're healing.

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You are DQ2.2, DQ6.3. You have a form of DQ2 that is associated with a lower risk of celiac disease than DQ2.5 but it is still considered a celiac gene.

Skylark, when they don't specify which is dq2 or 8 how do you know which is which?

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nora_n    60

I see you are DQ2,2 which is also a celiac gene, and int eh old days they did not discriminate between DQ2,5 and DQ2,2....just that 2,2 is less celiac prone.

I see you also are DQ1, it is the DQ6 .

There are some other forums, and there are several DQ1 there and they can be much more gluten sensitive than DQ2,5, they tend do react to even smaller amounts of gluten than the mainstream celiacs. They often ahve neuro issues from gluten.

Just google hadjivassiliou and there should be several articles out there and about 20% of his gluten ataxia patients are DQ1.

Also, there have been at least two officially diagnosed DQ6 celiacs here, with antibodies and biopsy.

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Bubba's Mom    103

I see you are DQ2,2 which is also a celiac gene, and int eh old days they did not discriminate between DQ2,5 and DQ2,2....just that 2,2 is less celiac prone.

I see you also are DQ1, it is the DQ6 .

There are some other forums, and there are several DQ1 there and they can be much more gluten sensitive than DQ2,5, they tend do react to even smaller amounts of gluten than the mainstream celiacs. They often ahve neuro issues from gluten.

Just google hadjivassiliou and there should be several articles out there and about 20% of his gluten ataxia patients are DQ1.

Also, there have been at least two officially diagnosed DQ6 celiacs here, with antibodies and biopsy.

Thank you BOTH so much! Nora you have given me more to look for in regards to the genes.

I AM extremely sensitive to even trace gluten. When I called to get the results of my blood test I was told I don't have Celaic. It REALLY confused me, because I get such a strong reaction from gluten! It's a good thing I didn't celebrate by having pizza and beer, or donuts?

I tried to Google celiac genes, but most of what I found was saying DQ2 and DQ8 are the Celiac genes. I saw that there *might* be other Celiac genes, but they're not sure what they are? It's kind of scary, because I'm going to the Mayo Clinic in Feb. to see if they can sort out what's going on with me. If they don't know what the genes mean, I wonder if I'll get the answers I need?

Skylark..I had gone "dairy light" since December, but in early Jan. I tried Annie's mac and cheese dinner. It was a gift, and I was short on time for cooking that eve. (The one with a pouch of the cheese sauce). It made me really sick with a bad migraine, and I quit all dairy right after that episode, not knowing for sure if it was the dairy or the other chemicals in it?

I've been using So Delicious coconut milk, with the thought that the caprillic acid would be good for yeast problems too?

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Skylark    935

Caprylic acid is lovely for yeast. I asked about dairy because folks have been linking to articles that dairy allergy can cause villous atrophy.

Mayo knows what the genes mean. Did your GI tell you that it can take a while to recover from strong damage with a scope? There are studies showing it can take a couple years to recover.

http://www.ncbi.nlm.nih.gov/pubmed/20519276

http://www.ncbi.nlm.nih.gov/pubmed/16810593

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Bubba's Mom    103

I had this most recent scope 6 months from the first. After the procedure he said he saw obvious scalloping of the intestine and suggested I might have refractory sprue? He seemed to think I should have healed completly in that much time? :blink:

Maybe he just doesn't know much about Celiac?

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nora_n    60

if you want to look for the forums where some DQ1 are, it is the gluten sensitivity folder on braintalk and same on neurotalk, and the glutenfree and beyond forum.

The subject on celiac and other genes has been discussed several times here.

One member (who had half a gene) had access to some publications and listed the other genes that were listed in an article about what genes celiacs actually had.

Since then there has been published a dutch paper which says the same thing, that about 2% have other genes.

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Bubba's Mom    103

Thank you Nora! I'll check these out. I'm thinking I'll need to have some science to back me up on the genetic thing? I was told my genetic result was negative for Celiac, even though the report said equivical.

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nora_n    60

there are w few articles out there where they list celiaics with other genes!

I guess I have posted some here over the years. I have not posted the dutch one here I think. (try a search)

I am a bit interested in the subject since I have two DQ5. (only beta chains tested)

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