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Dr. Says I Don't Have The Celiac Genes?


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16 replies to this topic

#1 Bubba's Mom

 
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Posted 27 January 2012 - 01:56 PM

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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#2 pricklypear1971

 
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Posted 27 January 2012 - 02:38 PM

Are these half of the genes? Did they reference those with dq2 or dq8? What lab ran them?
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#3 ravenwoodglass

 
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Posted 27 January 2012 - 03:00 PM

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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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#4 Bubba's Mom

 
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Posted 27 January 2012 - 03:11 PM

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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#5 ravenwoodglass

 
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Posted 27 January 2012 - 04:20 PM

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?
  • 0
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#6 Skylark

 
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Posted 27 January 2012 - 04:30 PM

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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#7 pricklypear1971

 
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Posted 27 January 2012 - 04:31 PM

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?
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
.
Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#8 Skylark

 
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Posted 27 January 2012 - 04:45 PM

I don't understand your question. DQbeta 1 02:02 is one of the two DQ2 alleles.

Perhaps this article on Wikipedia will help.
http://en.wikipedia.org/wiki/HLA-DQ
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#9 researchmomma

 
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Posted 27 January 2012 - 05:02 PM

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

This made me laugh out loud. I am beginning to think that idiot GIs are almost as common as DQ 2 or 8 in Celiac. hahahah
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#10 nora_n

 
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Posted 28 January 2012 - 05:21 AM

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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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)

#11 Bubba's Mom

 
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Posted 28 January 2012 - 07:02 AM

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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#12 Skylark

 
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Posted 28 January 2012 - 08:55 AM

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....pubmed/20519276
http://www.ncbi.nlm....pubmed/16810593
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#13 Bubba's Mom

 
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Posted 28 January 2012 - 10:52 AM

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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#14 nora_n

 
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Posted 28 January 2012 - 10:59 AM

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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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)

#15 Bubba's Mom

 
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Posted 28 January 2012 - 11:02 AM

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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