No Man's Land

[melblondin]

Sooooo, I feel like I'm in the middle of no-man's land with trying to figure out if we do in fact have celiac or not. The gist of it is in the fall of '08 I was diagnosed with hypothyroid and then shortly after that with a wheat allergy. I had/have suspected celiac all along because of chronic symptoms such as anemia, joint pain, extreme fatigue, chronic constipation, random headaches, gas, bloating, stomach cramps, etc.

On top of all of my symptoms I have 3 boys who are between the 3rd and 5th percentiles for growth and who before solid foods were introduced were up in the 75th range. They oldest two (3 and 5) complain of frequent tummy aches, have very loose stools, the 5 year old has eczema, and the 3 year old has face flushing pretty much all the time and little raised bumps on his upper arms. Then at the now 3 year old's 2 year check up his bloodwork for celiac came up "inconclusive." If I remember correctly he was 1 or 2 points away from being a positive. After that we went to a GI who looked at both boys, did some stool tests to check for parasites, said they were fine and sent us on our merry way.

Since I still strongly suspect celiac being that they are both very small and my infant just recently went from the 75th to the 10th percentile in a 5 month period of time, I went ahead and did genetic testing for myself. The genetic test came back positive for DQ2.5 hetrozygous. I don't want to go back on gluten to have a biopsy because I'll feel awful and my asthma attacks will come back due to the allergy, but I feel like I'm in this land of thinking I have it, but not totally certain. I wouldn't be eating gluten either way, but I want to know what's going on for the sake of my kids and I just kind of wish I could get a definitive answer one way or another.

I'm leaning toward having the 3 year old biopsied despite his most recent bloodwork being negative, but I don't know. Ugh....

Thanks for listening :-)

Any thoughts or opinions are most certainly welcome!

[ravenwoodglass]

You do sound like you and the kids are in the right place. Noone can make the choice about the biopsy for your little one for you. It is usually an easy procedure but he will be under anesthesia. There is also a chance of a false negative. The drop in percentile is significant, my son also had this effect and going from 75th to 10th in 5 months is something that happened with him. If you are going to biopsy then of course keep them on gluten until that is done but I would start the diet as soon as testing is over and see if it helps them, no matter what the test results.

[melblondin]

Thx for the input Ravenwood. We have an appt. next Thurs. Now I'm leaning the other way and just want to get them gluten free as soon as possible. I recently weighed the 10 mth old and he's not even on the growth chart anymore :-( The weird thing though is that I stopped giving him gluten about 2 months ago....

On a side note, do you know if when people say that 30% of the population carry the celiac genes and don't ever develop the disease if that number is referring to all the diff. "celiac" genes that they know of or is that 30% referring to the DQ2.5 gene specifically?? Just curious.