55% of Celiacs Don’t Stick to their Gluten-Free diet
I opened the door to my daughter’s pre-school and peeked in. I spotted my daughter munching on some potato chips that I left at school for when all the other kids were eating food with gluten. If she was eating them it meant there must be a party of some kind that I forgot about. I was probably supposed to bring her a gluten-free cupcake that morning. I slipped into the room, tip-toed over to the teacher, and apologized profusely. “Don’t worry about it,” she insisted. “She’s fine. Take a look.” I glanced over to the table and saw her laughing with a friend. She really was fine.
Being diagnosed with celiac disease at a young age is a blessing in disguise. The adjustment for the younger child is really quite smooth; Younger children accept change more easily. To be honest she only had a couple of years of gluten-based foods before they were taken away. It must be more difficult for a teenager or an adult who has been eating gluten for a decade or more to adjust to gluten-free products.
Recently, I had a discussion with a neighbor about celiac disease. She told me that both her brother and her niece (his daughter) were diagnosed with the disease.
“My brother doesn’t follow the diet, but his daughter does. They make the most unbelievable food for her.” she pointed out.
At first I was shocked that somebody could be diagnosed with celiac disease and not abide by the diet, but then I thought about it some more. It must be torture to suddenly have to refrain from the foods you have been eating for forty or fifty years. By that point in life you have established an eating routine and learned your food preferences. You know that your favorite pie is Boston Cream, your favorite cookie is chocolate chocolate chip, and your favorite cake is an angel food pineapple cake. You know that you like Cheerios for breakfast and lasagna for lunch. You know because that is what you have been doing for four decades!
According to the celiac disease center 55% of celiacs don’t follow a strict gluten-free diet. When you really think about it, it is not a surprising statistic. The gluten-free diet is not an easy one, and gluten-free products are expensive. We can only hope that with the explosion of the gluten-free food industry this statistic will vastly improve over the next few years. The celiac disease center suggests support groups as one method of helping celiacs stay true to their diets (http://www.everydayhealth.com/celiac-disease/celiac-disease-support-groups.asp).
I can’t imagine how difficult it is to make this life change. My only hope is that by getting my daughter diagnosed at age three I’ve made it easier for her to stick to her diet as an adult.
5 Responsesto “55% of Celiacs Don’t Stick to their Gluten-Free diet”
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It’s not easy to get used to – it took me a full year before I really felt comfortable. And I’m still not used to the taste changes in some of my favorite foods. (Oh, how I miss REAL cornbread instead of the GF stuff!) But based on the way I feel off gluten vs. on, I don’t know why anyone wouldn’t follow the diet. I’d rather be functional!
But some people are in denial. My own father was diagnosed, but refuses to acknowledge the fact. He says he’s been on gluten his whole life, so why should he change now. He says that he doesn’t show any symptoms – never mind all of the “unrelated” health problems he’s been experiencing. And it certainly doesn’t help that his ignorant doctor told him, “you only have a mild case of celiac” – and my dad took that to mean that he didn’t have to do anything about it.
I think it’s a lot easier once you’ve experienced a true GF lifestyle, because you understand the benefits that those who slip on and off the wagon never really see.
The main thing we need is to push greater education about it – among celiacs and wheat-eaters alike!
I have suffered a long time. I am thrilled that simple compliance keeps me pain free as well as out of all the bathrooms around doubled over in pain. I don’t even think about going off because when I happen to be accidently “poisoned” when I eat out, it is not worth the feeling that comes with it within 20 minutes. I am also glad to know what the problem has been my whole life and the medical help that I had sought all this time had failed me. My life has truly changed and a piece of pizza or cake isn’t worth it.
Many people dont keep with their diet. Its almost like watching someone who hits themself in the head with a hammer and they keep saying ‘ow, ow, ow, ow’ If you dont want to have that pain, stop hitting yourself!
I can understand the temptation to cheat for those who do not have GI symptoms, because the diet can be difficult at times. For myself, I couldn’t imagine it – knowing I’ll be sick for days is enough to make me turn away any food. I think it is easier when you are younger – my five year old will educate anyone within 50 feet about gluten and Celiac disease, but my 7 year old ate a cookie her friend gave her at school, knowing she gets GI problems. (We were all diagnosed in June). Having the Babycakes cookbook has helped with having tasty alternatives, though!