Remember when we FINALLY figured out that Owen’s eczema (and likely a lot of his breastfeeding issues) was related to a wheat sensitivity/allergy? Since he was 8 or 9 months old we have kept Owen gluten free and so many of his health issues have disappeared. Despite the fact that we thought maybe he would grow out of it as he grew up, every time that we have re-tested wheat back into his diet (under direction from his doctor), his rash/ear infections/other illnesses have returned. It’s so clear to me that there is a link here, even though it hasn’t been confirmed by blood tests or extensive allergy testing. That’s enough for me.
Still, Benjamin and I were somewhat confused at the diagnosis because neither of us have any food allergies (Benjamin has developed oral allergy syndrome late in life, but that’s just a minor reaction, likely related to his seasonal allergies). But, I figure they have to start somewhere. And even if we never know “where it came from”, it’s there. Which, again, is enough for me.
Fast forward to this past April. Benjamin started having extreme stomach pains, tenderness and bloating. At first I thought he was just complaining (which, as a self-proclaimed hypochondriac, he has a tendency to do…), but the pain persisted for weeks. He saw several different doctors, had blood tests, a urinalysis and an ultrasound done, but still, no solid diagnosis. It began to feel like even the doctors thought he was imagining it. The stomach pain spread to back pain and even materialized as testicular pain, leading him to new doctors to rule out [very scary] things like testicular cancer. Finally, a blood test came back with a marker than indicated celiac disease. After a few more appointments, seeking out a celiac specialist (thank goodness for living so close to some of the top medical institutions in the country, including Beth Israel, which is one of the only hospitals in the world with a Celiac Center) and an endoscopy, the diagnosis is now confirmed.
Benjamin has celiac disease, an autoimmune disorder characterized by a damaged intestinal lining that can lead to serious health issues if a strict gluten free diet is not adhered to. The endoscopy showed that his intestinal lining is pretty severely damaged, despite the fact that he hasn’t had any poop issues or other common celiac symptoms. If we hadn’t persisted with the doctors for these vague stomach pains, we never would have found out.
We had been testing out a gluten free/dairy free diet for Benjamin for several months while he saw the multitude of doctors, since I am a firm believer in the impact of diet on our bodies and suggested he try it. As it turned out, my instincts were right again. And, given Owen’s experiences with wheat, Benjamin’s diagnosis almost doesn’t surprise me. I say almost, because I’m still totally amazed at how acutely the symptoms materialized, and how extreme they were, despite the fact that he has eaten gluten his whole life with no issues.
Since we already keep Owen gluten free, I am pretty familiar with what the good products are, how to bake muffins and breads, and what I can and can’t make for him. However, we often “cheat” a little with him (using soy sauce, for instance, or a marinade with a wheat-based ingredient in it) because he is able to tolerate very small amounts of wheat with no symptoms.
With Benjamin’s celiac diagnosis, though, there can’t be any more cheating. For him, it’s not the symptoms (in fact, even when staying gluten free, his stomach pains still come and go) that are the problem. It’s the invisible and undetectable damage to his intestinal lining. “Cheating” now means permanently damaging his body and increasing his chances of cancer, malabsorption of vitamins, other autoimmune disorders, liver disease, and on and on.
Given that 1st degree family members of celiacs have a higher likelihood of having the disease, I am going to conservatively assume that Owen has celiac and work to make our house 100% gluten free (perhaps later in life we will get him blood tested and even do an endoscopy to see how damaged his intestines are). I’ll still eat some granola bars and boxed cereals with gluten, but in general, this won’t be a huge shift for us, given that we’re already more than halfway there. I feel so thankful that we know this now so that Owen has the potential to escape the serious health implications of this disease through a strict gluten free diet for the rest of his life.
So, any fellow celiacs out there? How strict are you about sharing dishes – do you have a strictly gluten free set of pots and pans, baking dishes? What about things like butter and peanut butter – do you have a separate one for knives that touch gluten? What do you say at restaurants or when friends invite you over for dinner so they understand the severity and what it means? Where is the strangest place you’ve ever found wheat/gluten? Just this morning we realized our multivitamins had gluten and we need to find a different kind. Thankfully we eat very little processed food so I’m very in control of the ingredients we use, but things like vitamins and shredded cheese were not even on my radar before this diagnosis.