As the Grateful Dead said, “what a long, strange trip it’s been!” And it’s only been a month since getting the phone call that my 12-year old son might be a celiac. For anyone who doesn’t know (most of us, I presume), Celiac disease is an auto-immune reaction to the gluten in wheat, barley and rye. It is an inherited condition. This experience has been so crazy that some friends are urging me to blog about it. If it will help someone else going through this, I am happy to share the ups and downs.
So, the backstory is similar to the many stories I’ve read in the internet blogs this past month – My son has had stomach aches, headaches, occasional diarrhea, and is in 10th percentile in weight (75th in height). The symptoms were intermittent. He’s outgoing, athletic and mostly full of energy, who knew? I don’t know if parenting gets easier or if the quality of your decisions improves when you have several kids, but with just one, I do know that everything is a new adventure.
So we mentioned the stomach issues to his pediatrician over time during our visits, but it never seemed to be a consistent problem. A couple of years back, we even had a whole year of not needing to go to the doctor. Amazing in hindsight.
As his headaches and stomach aches worsened this past fall, our pediatrician kicked things into high gear (with a lot of nudging from mom). When the doctor ordered a blood test, she included the antibody test for celiac just because of the intermittent stomach issues in his file. What a godsend! My husband and I don’t know of any family history at all so her expertise and thoroughness really saved the day. In my frustration with how bad my son felt, I’d even tried taking him gluten free and then dairy free for a couple of days. We saw no improvement, but I now realize that’s too short a time. I just thought I’d see some glimmer of improvement trying. But it also validates that mom instincts are good ones.
When I got the doctor’s call about the blood test results, I was shocked. I asked if we should do another test…what if it was a false positive? Do we just immediately jump into such an invasive procedure as an endoscopy for a kid? Turns out you do! We saw a pediatric gastroenterologist within two weeks. During out initial visit, he started right into what celiac is and talking about the procedure. Really? I actually had to back him up to get an explanation of what the blood test results told him. He told us the numbers were high enough to make it relatively certain my son had Celiac disease. To be honest, even if it was overly optimistic, we’d still hoped that this was all a big mistake. Pretty darn depressing to hear otherwise.
A big learning and yet another frustration was that you have to keep your kid on the evil gluten until the endoscopy procedure. It makes sense that the irritant has to be there to be detected, but it’s mighty hard to watch your kid struggle with stomach aches and headaches for two more weeks while waiting.
The endoscopy involved sedation, a hospital and many doctors and nurses asking my son lots of questions. The procedure confirmed Celiac. My son went gluten-free (as much as I can make a sure that things are that perfect – more on this later!) on January 11, 2011. It’s been two weeks. His stomach ache is just now starting to lessen (we talk scales of 1 to 10. 1 is ‘I feel something” and 10 is “Put me in the hospital.” We are down from 8 to 6 on the stomach ache) but the headaches are still just as bad. We did a brain MRI two days ago and are hoping for good results. The headaches could indicate some type of vascular response or calcification in the brain, if I understood the doctor. Fingers crossed! I don’t even know what that will mean if they find it.
One of the biggest struggles so far is trying to keep some level of normality around eating. Boy, that’s an understatement! I like to cook so dinner at home is easy with meats, a veg and a gluten free starch like potatoes, rice or sweet potatoes. Breakfast is fairly easy, but we are missing some easy, starchy choices like my son’s favorite cereals, biscuits and donuts. Lunch at school is hard. If it’s not fast, easy to handle and good, it just won’t get eaten. And dinner out is impossible so far. Not a good experience, but I am asking tons of questions at every restaurant we pass. “Take out food” from approved sources is less impossible. We have a couple of restaurants locally that support gluten free eating. (More on all this meal stuff later, too.)
Because of these challenges, we thought we would share a product evaluation and/or recipe each time we write. Did I mention I would be including my son’s viewpoint too? I figure the mom perspective is important but I KNOW the kid perspective is. If he won’t eat it, it doesn’t matter how good I think it is! J
Fumbling Mom Product of the day:
Kinnikinnick Foods K(inni)Toos Vanilla Sandwich Crème Cookies (K-Toos)
Mom rating: 10 of 10 (just because it made my son feel normal to pig out on yummy cookies.)
Kid rating: 10 of 10 – yummy cookies – what could be better?!