I’m not sure how many of you are actually interested in the nitty gritty of Benjamin’s celiac diagnosis (and Owen’s likely diagnosis, though we haven’t done the blood test yet to be sure), but I wanted to keep some notes here for others dealing with this disease and other food allergies. I also want to spread awareness — there is a lot of bad information out there about the hows and whys of being gluten free, and now that my family is in that boat I realize just how vital it is that everyone understand what the diagnosis means and what we can do to treat it.
First things first, there is a difference between a wheat allergy, a gluten sensitivity, and celiac disease.
Celiac Disease: Celiac disease is an autoimmune disorder where the body reacts to gluten by attacking itself and causing damage to the small intestine. This inflammation of the lining of the small intestine leads to malnutrition (due to the inability to absorb vitamins) and puts celiacs at a much higher risk for many issues like other autoimmune disorders, cancers, and even pneumonia. In addition, many celiacs have violent physical reactions to coming into contact with gluten, even the tiniest amount.
Gluten Sensitivity: An individual has undesirable symptoms when he/she eats gluten (fatigue, indigestion, constipation/diarrhea, gas, etc.), but does not have celiac disease. Although bothersome, there is no inflammation or damage to the intestine. Some people with gluten sensitivity can have very extreme physical responses to the tiniest amount of gluten, while some responses are quite minor.
Wheat Allergy: The body launches an exaggerated response to wheat proteins (which may show up as a rash/hives, wheezing, swelling, etc.) but the damage to the small intestine is mild.
Benjamin’s blood tests confirmed the celiac diagnosis and an endoscopy (where he swallowed a camera so they could see the inside of his intestines) was done to see the extent of the damage to his intestinal villi. This procedure and the biopsies they took indicated that Benjamin has extremely damaged villi — they were worn down completely, whereas healthy villi stick up like little tiny fingers. That means we have to take immediate and extreme action to eliminate all gluten from his diet.
At first I thought, “Oh, that won’t be that hard, since Owen already eats gluten free. There are gluten free versions of everything. You’ll be fine.”. But what I didn’t realize is that it’s not just about the obvious sources of gluten like flour, cereal and bread. It’s not even about hidden sources of gluten like in marinades and soy sauce and some flavored yogurts. It’s not even just about reading labels like “produced in a facility that also processes wheat”. We have to be extremely aware of cross-contamination too. That means getting rid of every sponge, plastic utensil and tupperware in our kitchen because they likely have gluten proteins on them. It means getting rid of every nonstick pan because the nonstick coating is porous and may be harboring gluten proteins. It means new baking sheets and even a new toaster. It means reading every label in our pantry and getting rid of, well, almost everything. It means questioning and Googling every brand and every ingredient before taking it off the grocery store shelf. It even means changing chapsticks and shampoos and hand lotions.
Phew. It’s a lot.
We did a major kitchen cleanout and got all new nonstick pans, kitchen tools and baking sheets over the weekend. We reorganized our cabinets and removed all products with even the smallest trace of gluten in them (except for a few boxes of cereal and some granola bars for me — those I can keep relatively contained and I fear that I can’t live without them!).
The great news is that while celiac disease can’t be cured, you can literally regenerate the intestinal villi and essentially reverse ALL of the symptoms and increased likelihood of developing future issues by sticking to a strict gluten free lifestyle. Unfortunately, unlike those with gluten sensitivity, Benjamin will never be able to “cheat” once in awhile or risk being glutened. If he’s not sure about a particular food at a restaurant, he can’t eat it. Bottom line.
Benjamin and I are both struggling with his diagnosis. He is mourning food he’ll never eat and the crazy things he’ll need to do before he can eat out in public again. I am mourning having to write a 10 page email when someone invites us over for dinner, and not being able to bake homemade bread (yes, yes, I know there are gluten free flour blends and mixes, but they are NOT THE SAME). But we’ll get through it, and then it will just be… life.
So… anyone want to invite us over for dinner?