And then there were two...

We officially have another child with celiac disease. This is not a surprise...we were fully expecting the result we received, but were totally taken aback by the severity of Connor's celiac disease. The boys each have different genes, one each celiac and one each gluten sensitive, so Charlie and I obviously are double gened ourselves. I would never have guessed that Connor was as severe as he has proved to be, given that his symptoms were so much less dramatic than Timmy's. We took him off gluten almost a month ago, and we're not looking back.

He is HLA-DQ2 and DQ6 positive, which means that his particular brand of celiac disease is strongly associated with "brain fog", gluten ataxia, apraxia and aphasia. Since going off gluten 3.5 weeks ago, he has made more progress in his speech than in the previous year. He's using "-ing", actually using "is" and "the", possessives for people other than himself, and putting together sentences of increasing complexity. Speech has been our biggest worry with Connor -- he's been evaluated several times, and each time no one in the process could figure out why he didn't talk properly. At 30 months, he was testing at 18-20 months. At 36 months, he was testing at 20-24 months. Now he's matching markers for 36 months at almost 41 months, so he's done six months of catch up in less than a month. It's been nothing less than miraculous.

Other things that have dramatically improved...

- He's gained almost half an inch of height in a month, and one lb. Oddly enough, he's eating less though. His tests showed that he was actually absorbing less than 30% of what he was eating as opposed to 90-95% of a non celiac person. As a result, we suspect he has some nutritional deficiencies. Dr Fine and Dr Fasano estimated a full 6-12 months before his gut is fully healed and only then if he stay STRICTLY gluten free.

- Despite weight gain, he's actually had to have his pants tightened because belly swelling has gone down. I never particularly noticed he had a swollen tummy until it was gone.

- He's asking again for naps after quitting taking them for almost a year, and is sleeping at least 11 hrs at night as well. Considering that at 15 months he was getting up 8-10 times a night and kept that up until almost 3, this is damn near miraculous.

- He actually has healthy bathroom time. I won't share too much here, but he and I are both pleased with poop time! In the last few months before his diagnosis, he had been experiencing sudden unexplained uncontrolled diarrhea -- it even threatened his "Day Out with Thomas", it was so bad. We had to buy emergency underwear out on Baltimore harbor. And we took him to the Air and Space Museum in DC and had to go home because of a horrid series of accidents on the National Mall. Poor kid HATES having accidents, and he's had no episodes at all since going gluten free.

I am so glad that if the boys had to have this condition that Timmy was as dramatically sensitive as he is. He saved his brother a few years of pain, because I believe it would have taken me a much longer time to put together the puzzle from speech delay and some diarrhea. But I also believe that if I hadn't pushed so hard and been willing to depart from the military healthcare model, both children would be in much worse shape today. Celiac disease is a sneaky insidious disease that cripples people and shortens their lives; and unfortunately it is one of the most vastly underdiagnosed diseases in America today. It takes 11 years on average from onset of symptoms to find out what is wrong. That is about 11 years too long in my opinion, and all I can hope is that my sweet babies were caught in enough time to make sure that they will never feel the ill effects of unchecked CD.

I've jumped into gluten free baking and studying nutritional issues. For people interested in gluten intolerance, sensitivity, celiac disease, what have you...I strongly recommend "The Gluten Connection" by Sheri Lieberman. This book is revolutionary and ties many seemingly disconnected issues to include osteoporosis, fibromyalgia, weight gain, acid reflux, etc to gluten intolerance. You don't have to be full blown celiac like my children to really have gluten screw up your health.

I've take the kitchen completely gluten free. I bought some applications for gluten free shopping and cooking for my iPhone. I prepare and pack food for every outing. I've perfected a standard bread recipe, and found a kick ass chocolate cake recipe. I've read book after book about healing with food, and am sneaky chefing my butt off to get needed nutrients into the kids. I've got rid of the vast majority of prepared foods - not that we had many to begin with - but am hoping to take the whole family in the direction of organic fresh foods with a heavy emphasis on lean meat, vegetables, fruit and nuts with a smattering of whole grains like brown rice and quinoa. I joined a local organic community supported agriculture (CSA) and will be getting an amazing amount of fresh organic locally grown produce starting in a week or so. We are off of all artificial sweeteners and high fructose corn syrup is strictly verboten. I am strongly trying to avoid almost all food additives to include the polysorbate family and noxious food dyes. I'm seriously considering brewing my own kombucha. I bought a book about celiac disease for Connor and after an unfortunate shared cracker incident have repeatedly emphasized that he must check with mommy to find out if he's eating a "feel good" food. I've got plans in place for preschool, birthday parties, PCS, etc. I will be a gluten policeman until my kids can be responsible on their own for their own health.

I'm not saying any of this to be patted on the back, but just to show that this disease is totally manageable and practically nonexistent if it's actively pursued daily. And I am pursuing all these other health related changes because I think that the current American diet and food processing is seriously endangering our children's health -- the incidence of genetically modified foods, processing, celiac disease, diabetes, lupus, asthma, allergies and autism are all rising at roughly the same rate. That can't be entirely coincidental.

I'm going to follow up this post with some nutritional changes I'm making...we're doing a few incremental things (we're still eating too much pasta and bread IMO, but we're moving away from it...just to show what I'm trying to do. If people have any other ideas, I would love to hear them...

So...Connor has celiac disease. I gave him some extra hugs tonight, got "Wuv oo, mommy" and sigh...here we go, kiddo...let's make you well.