Hla Type... I'm Confulsed

[idliketoknow]

Hi. My 2 year old son recently had HLA type test done. His Pediatric GI said he does not have celiac because he does not have the DQ 2.5/DQ 8 genes.

He has all the symptoms. GI did not want to scope, said it was not celiac. Can anyone tell me if his type, is he non celiac gluten intolerant?

These were the other HLA variants found.

HLA-DQA1* 01

HLA-DQA1* 02

HLA-DQB1* 0202

HLA-DQB1* 0602

Thank you.

Confused Mom

[kareng]

What were the results of his Celiac antibody panel? They certainly did that first?

Even if he doesn't have Celiac, he can have a gluten intolerance. That is usually diagnosed by a good result with the gluten free diet.

[idliketoknow]

What were the results of his Celiac antibody panel? They certainly did that first?

Even if he doesn't have Celiac, he can have a gluten intolerance. That is usually diagnosed by a good result with the gluten free diet.

His other tests were done at age 1 1/2 the results were:

Gliadin Antibodies, IgG >100

Gliadin Antibodies, IgA 4

Reference Range

<11 negative

11-17 equivocal

>17 positive

Tissue Transglutaminase IgA AB <3 Ref Range <5 negative

Endomysial Ab (IgA) Screen - Negative

End Ab Titer Reflex Reticulin Antibody, IgA- Negative

[roxieb73]

Looks to me like IgG is POSITIVE!!!!!!!!! I am not sure about the Gene test I will have to look it but something is amiss.

[Bubba's Mom]

Hi. My 2 year old son recently had HLA type test done. His Pediatric GI said he does not have celiac because he does not have the DQ 2.5/DQ 8 genes.

He has all the symptoms. GI did not want to scope, said it was not celiac. Can anyone tell me if his type, is he non celiac gluten intolerant?

These were the other HLA variants found.

HLA-DQA1* 01

HLA-DQA1* 02

HLA-DQB1* 0202

HLA-DQB1* 0602

Thank you.

Confused Mom

The Dr.s that say a person needs to have DQ2 or DQ8, or it's not celiac drive me crazy! They are still resarching this. They are finding more genes are involved than originally thought.

It looks like your son is a DQ2.2? Same as me!

I tested negative on the blood test, but a scope showed severe damage. Completly flattened villi..not patchy at all and very obvious to the naked eye.

There are a few of us here with DQ2.2.

[beachbirdie]

HLA-DQA1* 01

HLA-DQA1* 02

HLA-DQB1* 0202

HLA-DQB1* 0602

His other tests were done at age 1 1/2 the results were:

Gliadin Antibodies, IgG >100

Hmmm...I'm with Bubba's Mom, I think I see a DQ 2.2 in there. That, along with the very positive Gliadin IgG antibodies looks pretty suspicious. That IgG means your son's body IS reacting to gluten and not in order to like it better.

It doesn't just take a 2.5 to be vulnerable to celiac. There are some celiacs, though smaller in number, who are only 2.2. Besides that, there are other types they don't test for (DQ7) which can pair up with what your son has, and form the 2.5. Your ped GI is sort of clueless on this.

And there are some who have celiac without either DQ2 or DQ8. The absence of these genes does NOT mean impossibility of celiac, only greatly lowered probability.

Skylark and I think nora_n have the best quick understanding of the gene stuff, you could give a shout to one of them if you need more detail.

[idliketoknow]

Thank you all for your input. I didn't think I was crazy to push for more answers. My sons pediatrician is old med residency pals with the GI and shot me right down when I second guessed the GI' and his "non celiac; your son has allergies" diagnosis.

My guy + gluten = misery for days. He is very, very sensitive to CC. Also has severe food allergies to wheat, barley, peanut, dairy, egg, soy, chocolate, strawberry, bananna, and carrot. Feeding him is a challenge.

I again appreciate your feedback. So helpful!

[Bubba's Mom]

Thank you all for your input. I didn't think I was crazy to push for more answers. My sons pediatrician is old med residency pals with the GI and shot me right down when I second guessed the GI' and his "non celiac; your son has allergies" diagnosis.

My guy + gluten = misery for days. He is very, very sensitive to CC. Also has severe food allergies to wheat, barley, peanut, dairy, egg, soy, chocolate, strawberry, bananna, and carrot. Feeding him is a challenge.

I again appreciate your feedback. So helpful!

I'm also very sensitive to the slightest cc. Can't tolerate soy, dairy, peanuts, corn, MSG, or yeast. The only grain I eat is brown rice.

If I get trace cc, my reactions are severe and can be neurological (balance, memory, cognitive, mood) digestive, or DH like skin eruptions.

I just don't understand why the Dr.s dismiss anything but DQ2 and DQ8? Maybe the reason they think those are the only genes is because they're not DXing anyone that doesn't have those? I think in time they will find that there are a lot more genes involved!

From my own observation it seems like the DQ2.2s get more severe reactions to trace cc. I ate fruit cut on a "clean" wooden cutting board at a hotel and it was enough to zap me! Eating in a restaurant is not a safe option for those of us that are real sensitive.

When reading labels I don't eat anything made on "shared" machinery either.

You might want to ask your son's Dr. for a small intestine bacterial overgrowth (SIBO) test. I was told that if it's present, the bacteria emit toxins as they eat the nutrients from various foods. Those toxins will get into the bloodstream and cause reactions to foods.

Once they are knocked out the intestine heals and the reactions go away. It takes time though.

If SIBO is present, it can be treated with antibiotics and/or digestive enzymes and probiotics. IMO all Celiacs, and anyone with digestive issues (IBS)should be taking probiotics.

With your son's food restrictions you must have a hard time with meals/snacks? He has more than me and it's hard for me sometimes.

(((hugs to you both)))

[Ranne10]

How do you get the 2.2? This is very foreign to me. I was negative for Dq2 & Dq8 but my other results are:

DQB1 0601

DQB1 0604

DQA1 01

DQA1 -

There were no test for DQ7. Can someone help with decipering this?

Thank you!

You are all wonderful by the way. This site has been a resource and salvation to me over the last two months.

[nora-n]

You have DQ6 and DQ2,2 (there have been quite a number of DQ2,2 people here with celiac symptoms, and some have been diagnosed I guess too)

The 01 in the alpha belongs to the 06 in the beta, and is DQ6. DQ6 is a subtype of DQ1 (the other one is DQ5)

The 02 in alpha belongs to the 0202 in the beta chain

There is no DQ7 here since they are looking for a DQ7,5 whose alpha is 05* and there was none, and they already found DQ2,2 and DQ6 and the corresponding alpha chains

For charts, look up HLA DQ on en.wikipedia.org

[Ranne10]

Wow! Thank you! I was trying everything to figure this out. I even got an A in genetics in college - but I was stumped!

After all test results my doctor has diagnosed Celiac. Still trying to figure it all out.

[Ranne10]

Sorry Nora. Once I read back through the numbers I realized you were responding to Beach Birdie.