Today is International Celiac Awareness Day
In honour of the first ever International Celiac Awareness Day (refer to the page set up by the Association of European Celiac Societies at http://www.aoecs.org/) I’ve decided to write about my experience with the disease so far. Please share your own story in the comment section below.
Almost two years ago I found out I have celiac disease. Since then, everything has changed.
For 47 years and 45 days, minus however long my mother fed me baby formula, I have been eating wheat, rye, barley, millet and other gluten-containing substances. The lining of my small intestine was damaged and many nutrients were not absorbed.
This disease may or might not be behind the stomach pains and leg aches that plagued me as a teenager, the days lost due to migraines (see http://traceyarial.com/blog/migraine-sufferers-should-be-tested-for-celiac-disease/), and a miscarriage between my two children. It definitely caused heavy periods, borderline anemia, four damaged molars and tooth enamel literally pulling away from some of my teeth.
Given that this is a genetic disorder and my dad doesn’t have it, I assume it caused my mothers’ life-long digestive difficulties, her extreme menopause symptoms and perhaps even the non-Hodgkin’s lymphoma that killed her when she was only 67 years old.
Eliminating gluten from my diet is clearly important for these reasons, but I’ve noticed other positive effects too. An uncomfortable bloating feeling I thought was normal has disappeared, as has a constant feeling of having to urinate. My doctor says my iron levels are higher than he’s ever seen them. The hot flashes and headaches linked to menopause are significantly less severe than they were, although that may be timing coincidence.
Given all those ramifications, it’s clear that knowing I have celiac disease is significantly better than continuing to damage my health by eating gluten. Despite this, there are many daily inconveniences.
I’m now 20 pounds too heavy and few of my clothes fit. Despite exercise and attempting to relearn how to eat, I keep getting heavier. Most of the weight is settling on my hips and stomach, a bad sign for someone whose family history includes heart disease and diabetes.
Worse than that is my frequent discomfort around food.
It took a while, but my family consumes fewer wheat products at home now, and that limits arguments. I can freely use the butter dish, the bread board, the knife, the pizza pallets and everything else. Other family members still enjoy bagels and bread, but they store them sealed in the freezer and carefully use a separate knife and cutting board for them. It was evident how far we had come the other day, when my daughter carefully put the dishcloth and towel in the wash after she contaminated it with a gluten-containing product.
We’ve also replaced the toaster for a four-slice one and my husband made a wonderful little steel cap to make sure that no one accidentally uses my side. It also prevents crumbs from wheat products from falling into it.
Everyone is working hard to protect my health.
We all still find the transition frustrating though. Pizza night no longer feels as joyful as it once did. Everyone has switched to gluten-free crust to avoid flour flying around, but not everyone likes it. Although family members are careful, mistakes still happen and I’m not particularly pleasant when I have to don rubber gloves to clean wheat bread crumbs off the counter or carry beer bottles to the basement. Every time I have to do this, I feel unloved.
Family and friends often go out of their way to make gluten-free dinners, but it’s clear they still find it uncomfortable. It’s even worse when hosts or hostesses feel bad either because they forgot or because their efforts didn’t work because they used some food product that is contaminated with wheat and they didn’t think to check the label. As one friend said, “who would imagine that mustard has wheat in it?”
Going out for dinner is difficult too. There aren’t many restaurants that provide gluten-free food. The ones that do, like Chez Chose (http://traceyarial.com/blog/chezchose/) and Mozza (http://traceyarial.com/blog/enoteca-mozza/), work very hard, but even they can’t guarantee 100% gluten-free conditions.
Conferences and business lunches have been horrifying, not just because I have to take care to avoid wheat, rye and barley but occasionally another participant bristles at my request. After hosts caringly provided gluten-free options at one such event, another workplace participant harped at me about how unrealistic I am. She also rhymed off all sorts of things I should do, including treating myself slowly with gluten so that I wouldn’t get symptoms. Why do strangers feel the need to advise people on matters they know little about?
I’m afraid that the journey I’ve gone through may have made me equally annoying. I see gluten in everything and possible signs of gluten intolerance everywhere. I’m always asking people if they’ve been tested and I’ve been berating my children and my spouse about getting tested, although their doctor doesn’t think it’s necessary. Just ask me the tiniest question and I go into details about the disease that are just not polite.
Social discomfort aside, I’m also finding it difficult to figure out how to eat to avoid cravings, satisfy hunger and avoid over-eating. I get full faster, but it takes longer to actually feel it. It feels like I’m living in someone else’s body.
My doctor says my thyroid works well now that gluten has been eliminated but I’ll ask him to test it again when I next see him. He also told me to add folic acid to my diet, which I’ve done.
Avoiding dairy and taking iodine drops, like William Davis mentions in http://www.wheatbellyblog.com/2011/10/i-eliminated-wheat-and-i-didnt-lose-weight/ hasn’t helped yet, but it might, I suppose.
Perhaps even more protein needs to be added to my diet, as my nutritionist suggested?
I’ve also decided to try some of the tips that John Libonati provides in his article http://glutenfreeworks.com/blog/2010/01/21/weight-gain-in-celiac-disease-how-to-lose-weight-on-the-gluten-free-diet/#.UZTvNbWG1JQ.
He says to:
- choose foods that contain glutamine – eggs, fish, meats, cabbage, beets, beans, spinach and parsley to satisfy gluten cravings;
- take probiotics; and
- try drinking a glass of water with 1 tbsp flaxseed meal before going to bed.
So these are my next steps. I’ll let you know how it goes.
About the Author
Tracey Arial helps Canadians grow with notable nonfiction and urban agriculture.