Help!

[Alikae]

My mother has celiac disease and I've been noticing symptoms in my daughters, 1 & 2 years old. Before making them go through all kinds of blood work I decided to have myself tested - my celiac panel came back negative, but I need help interpreting the HLA typing results. My mother was positive for DQ7 and DQ8 when she was tested, and these are my results:

HLA-DQ2 - Negative

(DQA1*05/DQB1*02)

HLA-DQ8 - Positive

(DQA1*03/DQB1*0302)

HLA-DQA1* 05

HLA-DQA1* -

HLA-DQB1* 0301

HLA-DQB1* 0302

And no mention of DQ7. Any help would be appreciated!

[basilicious]

Hi Alikae,

I can't interpret the results for you, but your doctor *should* be able to walk through them with you. (It's a nice test of your doctor, actually.)

Also, if you had it done by Quest Labs, they should be able to provide you with a sample report, which is helpful in explaining the various outcomes. I am waiting for my genetic test results from Quest, and I found the sample report on their website a few weeks ago. Unfortunately, I couldn't find it when I searched a few minutes ago, but I'm sure I probably just missed it. Hope this helps!

[mamaupupup]

Hi there,

I have twin tiny 5 year olds (32 and 34 lbs) who will in all likelihood be positively confirmed Celiac next week. I know the agony of worrying about them and not wanting to poke them!

I can't interpret the results other than to pass along that our specialist, Dr. Pietzak at Children's Hospital LA, emphasizes that 30% of the population has the gene pair for Celiac and that the population with Celiac is about 1 in 133. So, it is helpful to know if you have a predisposition for Celiac. Also, Dr. Pietzak mentioned that there is some evidence of generation skipping, so your mom and kids may develop it, but not you!

My kids were symptomatic and it took me way too long to a) find a doctor to write orders to get them tested and b)get up the courage to draw their blood. I worried about it longer than it actually took to do the blood draws!!! I'll write what I ended up doing, just in case it's helpful!

- I made sure I was certain of all the tests I wanted done: (celiac panel, CBC, including all the related celiac deficiencies--iron, vitamin D, etc.) and made sure I had the paperwork for it all. I also checked in with the lab front desk and made them repeat back to me (from the labels the lab tech was going to use) which tests blood was being drawn for--I didn't want them to miss anything...(as it was, one doctor left out some other bloodwork and I did have to poke them again two weeks later--which went more smoothly the first time). Note that they can only draw a certain amount of blood based on weight. We were borderline on weight (I rounded up just to get it all to work--not necessary medically appropriate, but emotionally appropriate for us!).

- I asked friends/family/doctors who was the best person to draw the kids' blood

- I had MY bloodwork done by that person to double check!

- I called the lab ahead on the day I had the courage to do it to make sure the guy I wanted was there and checked to see when he was taking lunch, etc!

- I did tell my kids ahead of time what was going to happen, not sure I would explain much to kids as young as yours until it's imminent (like when you're in the actual chair!)

- I took one kid at a time (left the other child with my Mom)

- I held the child on my lap and gave her something distracting to hold in the other hand (one of those sort of snowglobe/water/oil/wave things)

- One child bawled the whole time, the other whimpered once and then was fine

- I took each child to get a small thing from Claire's afterward

I'm so glad I did it...but I waited way too long! Hang in there! I hope this helps a little!