Hla Dq2

[jams]

I just got the call that both of my kids carry the DQ2 gene. I have read that 95% of celiacs carry this gene. Does anyone have any other information? My glasses are broken so it is hard for me to read all of the jibberish lingo on the web sites.

Also, for those in this situation, should I ask to have them tested annually, everyother year, or every 5 years? I have read different info on that too. Both of my kids show a few signs, but it could just be me being over protective too!!!

Any advice???

[wolfie]

Have they had the Celiac Panel run recently? My son's GI said the DD needs to be tested every 2 years OR if she is showing any symptoms.

[jams]

  wolfie said:

Have they had the Celiac Panel run recently? My son's GI said the DD needs to be tested every 2 years OR if she is showing any symptoms.

I had Megan tested this month and is neg. Josh was tested last November and neg. I just have heard so many conflicting stories that I thought I'd put it out here and see what others are doing. I am a little crazy when it comes to my kids. I over react a lot!!! At least I know it though!!

[Ursa Major]

Angi, have you considered testing them with Enterolab? It is much more sensitive than blood work or endoscopy, and would show if there is damage or not, and if they have active gluten intolerance at this point. Because even though their symptoms may be mild, or absent altogether, doesn't mean that damage isn't slowly accumulating. Why wait until they are actually sick and their villi are destroyed?

[mmaccartney]

I second Ursulas suggestion regarding Enterolab.

Both of my children have the DQ2 gene. they both seemed to show symptoms. The traditional Celiac Panel showed that one had an elevated anti-gliadin IgG, but nothing else. Enterolab showed negative across the board (anti-gliadin and anti-casein IgA, and ttg) which was quite reassuring.

I do plan on testing them about every year, unless they show symptoms which would make me test sooner. A year might seem like too much, but we have a lot of food issues, and the disease could trigger at any time. I wouldn't want them to go 4 or 5 years without symptoms only to find out they are one of the "silent" celiacs. I feel that testing every year gives us a better chance at heading off damage to their little bodies. When they get older they can get tested as often as they feel appropriate.

[jams]

I am a little confused...

What does entrolab test for that the regular dr doesn't? Is it supposed to be more detailed? I don't mean to sound so clueless, but I am!! I had a postive diagnosis without knowing we were looking. So, if the kids antibodies show up negitive, doesn't that mean they are fine?

I asked my dr if we could test every year and he seemed to think that was a bit of overkill. I would rather have them tested every year and know they are good. One concern of his (dr) was the costs of testing. We are not by any means weathly, but can you really put a price on your childs life?? I said I didn't care what I had to pay, just test them!!!

I'll have to find the website for entrolab and research more after I get my glasses repaired!!

[AndreaB]

Angi,

Enterolabs website is Open Original Shared Link. We got the full panel done which included dairy at the time (maybe it still does) for $369. If you opted for the egg/soy/yeast that would be another $199. If dairy is not longer included, it is $99. I had the testing done because of my allergy tests showing positive for gluten and other things (in sig). I had everyone tested full panels (except infant son). We had no symptoms whatsoever. 3 out of 4 of us tested positive for active gluten intolerance and my oldest son has mild malabsorption. If we hadn't had the testing done we would still be oblivious since we had no symptoms. I put the cost on credit card precisely for the reason you gave, you can't put a price on a child's wellbeing. Enterolab does stool testing and since the intestines are where the reaction starts, enterolab can catch the intolerance faster. By the time the blood levels are high enough, there is already a lot of damage. Enterolab cannot tell you whether you have celiac, only gluten intolerance, which from what I understand is pretty much the same thing. Is it only the propensity for other autoimmune diseases that separates the two or is it something else.....that's what I don't know. My husband and son have two celiac genes (DQ2 or DQ8) and my daughter and I have one of each (with DQ7 being the sensitive one). If you look at it that way, I would assume my son has the beginnings of celiac since those are the two genes he has. That would explain why he started having malabsorption I suppose. I'll have to look into this more. Just wanted to give you some info on enterolab.