In 2001 most people hadn’t heard the word gluten, never mind seeing it plastered on everything from cereal boxes to shampoo bottles.
That year, I experienced a life changing event.
Even though I’d made some positive dietary changes, I was still experiencing troubling symptoms. After receiving the results of blood tests in which the IgA and IgG were all in the high range, my M.D. told me to stop eating gluten-containing foods.
He wrote out the grains I needed to avoid, and sent me on my way. These included – wheat, rye, barley, and oats.
The next step in a positive diagnoses is, and should have been, a small bowel (intestinal villi) biopsy to test for celiac disease. This procedure is done under anesthetic in a day clinic. My doctor didn’t advise or order the endoscopy biopsy, the gold standard test for CD, just an elimination of gluten-grains. Would a biopsy have caused me to take this situation more seriously? Perhaps. But I don’t fault him, as he likely saw it as invasive and unnecessary.
I went home and started researching how to cook for a gluten-free diet. I learned from reading, that it was going to be challenging. The focus seemed to be on what I’d be deprived of. Still, I was determined to figure it out, because I new I felt better when I avoided gluten. Not only did I join the small ranks of other gluten-free eaters, at the same time I knew because of my long standing sensitivity to dairy foods, I needed to also stop sneaking chunks of extra old cheddar cheese.
Being a perpetual optimist, I refused to believe I was doomed to a life of deprivation. I knew I had to focus on what I could still eat, not on what I couldn’t.
I did my best, seeking out recipes and local resources. But choking down dry cardboard-like rice bread or oily starchy gluten-free muffins and cookies were hardly something to get excited about.
So, with a love of baking, instilled by my “what-kind-of-pie-would-you-like-today-dear?” grandmother, I set out to play with traditional family recipes, making them vegan and gluten-free. Things were looking up!
The bloating, cramping, and pain, as well as much of the heavy fatigue and brain fog I’d lived with too long, began to become non-issues. What a relief!
However, I’d still get weak in the knees when I’d visit my friends who made the best baklava I’d ever eaten and lose all discipline. I loved tempeh as a “meat replacement” and the only one available had a teeny tiny amount of wheat-containing soy sauce. Also I didn’t want to inconvenience my friends or family so ate foods I shouldn’t have been consuming when invited out for meals. And cross-contamination in restaurant kitchens…no awareness back then.
I didn’t realize the true health risks of not being 100% compliant to a gluten-free intake because I didn’t know back then the damage that could be done to the gut with only a trace amount of gluten.
And then my adult daughter was also diagnosed. With chronic anemia her only known symptom, I started to suspect she may have CD, and encouraged her to get tested. When her blood work and intestinal biopsy came back positive (one of the worst cases her gastroenterologist has seen), I knew I needed to get more strict, for her sake as well as my own.
Her diagnoses propelled me into getting rid of every tiny bit of gluten containing foods. I knew for the sake of her recovery we needed to enforce the absolutely no gluten rule as strictly as if our life depended on it…because it does! In fact, those with un-diagnosed CD or those who are non-compliant to a CD diet, are at risk of much higher rates, possibly 80% higher, for digestive/intestinal cancers!
What happened next was an interesting surprise, and a lesson in how we can become so accustomed to a symptom and not even recognize it as un-healthy.
Low and behold, I discovered a lingering symptom that I didn’t even know was a symptom, as I’ve lived with them for as long as I can remember! A week after removing the tiny amounts of gluten from my intake, I realized I didn’t have any mouth blisters.
Prior to removing most of the gluten, I’d lived with small pus-filled blisters in the insides of my cheeks, usually 3-9 at a time. I would roll the tip of my tongue around the inside of my cheeks feeling them unconsciously because they were annoying. As they filled (usually over just a few days) they would “mature” I could scrape it off with my fingernail. I’d asked doctors and my dentist about them in the past, but they’d alway shrugged them off, not knowing what they were.
I came to realize that they were directly related to the gluten when I became 100% compliant after my daughter’s diagnosis, when the blisters completely disappeared. (Rarely when I’ve eaten in a restaurant, where cross contamination is common, will I get a small blister, or I inadvertently buy something I think is celiac safe, but turns out to have hidden ingredients.)
When I think about the chronic eruption of those mouth blisters in years past, I can’t help wonder – what was happening in the rest of my gut when I ate gluten foods?!
Do I, like my daughter, also have celiac disease? Or do I have non-celiac gluten intolerance (a more recent discovery and diagnosis), or perhaps just wheat allergy? I’ll likely never know for certain, but I will tell you that because of the likelihood, and due to the damaging affects/effect of eating gluten if I do have celiac disease (it’s too late to have a biopsy, I’d have to go back on gluten for 6 weeks and become sick again) I have since made my daily food choices as if I have CD.
The great news is that, not only have I learned to live within the “restrictions” of a celiac diet, but just as when I moved to a vegetarian and eventually a vegan intake, a whole new world of deliciousness has opened to me (and my family!)
In fact, gluten-free vegan choices are abundant! Unfortunately there are a lot of commercial GF vegan products available but much of them are made from inferior ingredients, not whole-food ingredients. You can read more about that in this post! (coming soon!)
And if you’d like to learn more about GF grains, and alternatives to baking with gluten-containing flours, check out this blog: GLUTEN-FREE GRAINS