Intro - Possibly Celiac 10 And 11 Year Olds

[domesticactivist]

Hi,

I hope it's ok that I'm putting my intro here! I got started on the forums at glutenfree as "joy" but have found that the forums here are more active.

Over the past couple months, my partner and I have begun to suspect that our 10 year old son has celiac disease, and now we are wondering about our 11 year old daughter and myself as well. My kids spend half of each week with their dad (who adopted them and is my ex-husband, they have different biological fathers and I do not have access to their medical history). We also homeschool our kids and always have. Their dad is cooperative and we are on the same page in trying to get our kids healthy. We are having some issues trying to get consistent with the food and other things from house to house.

Ds has always had a lot of hay fever symptoms. He was a colicky baby, then had asthma which cleared up when he was about 3. For many years he's also had a lot of joint pains and other "random" aches and pains. I've asked drs about this and no one had answers. This August both he and his sister got pertussis (they had been vaccinated, got it anyway). They both ended up with pneumonia, then ds got intense pain in his right hip. He had an emergency surgery to aspirate it, they thought it might be septic, and did a further procedure as well to really clean it out. They guessed that it was either staff or a reactive rheumatoid arthritis to the walking pneumonia, though either of those things would have been rare for a kid his age, and the tests did not come back conclusive. He had 3 weeks of heavy duty antibiotics and did recover. He's also been on allergy shots for his seasonal stuff all year, and xyzal.

No one seemed to think it was related to his previous aches and pains, but we thought it must be. He'd also been having nightly stomach aches and anxiety that wouldn't go away, dyslexia, and adhd type issues. My partner did some research and thought it might be celiac. We started cutting out gluten and his symptoms improved drastically. Even getting a little bit of gluten via cross contamination brought them right back. We looked at some old allergy tests his dad had run, and while everything came back "low" and we had discounted it, he had noticeable IgG for wheat, rye, barley, soy, blueberries, pineapple, peanuts, and some other stuff. He had noticeable IgE for corn. We cut out corn and his stuffy head went away within a month. Reintroducing it brought his stuffed up head and sinus problems right back.

We didn't realize right away that the testing for celiac can only take place if he's eating gluten, and we didn't know how important it is to stay COMPLETELY away from it if he has celiac. Now that we know, we've decided to keep him 100% gluten-free rather than undergoing testing. This is what he wants as well.

Dd doesn't have the same kinds of symptoms, but she is very small for her age - she's never even been ON the growth charts. She also has Tourette's (unmedicated), and some attention and anxiety issues. We're keeping her on gluten right now so that we can get blood tests done for her - basically this amounts to keeping one loaf of bread in the house with her own peanut butter, honey, and paper towels.

We decided to make our house 100% gluten-free and have been getting rid of old appliances, containers, utensils, cleaning everything, etc. At their dad's house it will be mixed since their dad doesn't want to be gluten free (yet). I had terrible problems when we started going gluten-free, but I think it was because of rice flour making me feel bad and then not eating and screwing up my blood sugar. Now it's going better. My partner saw her eczema improve dramatically when we cut gluten.

We have our first dr visit for all this tomorrow and I'm going to request genetic testing from Kimball Labs so that we can see our risk level for celiac disease and then take it from there.

I have lots of questions, would love input from others, and have been wanting to post on some of your threads, so I'll be around!