I was diagnosed with celiac when I was a baby, having chronic diarrhea. But this was back in the 1950s, when there was very little information on celiac. It was believed that only babies got celiac, and that it was something you outgrew. According to my mother, she was told to not give me dairy; gluten, or even wheat, was never mentioned. And the diarrhea continued until I was a toddler. And then, I supposedly outgrew celiac!
I remember being a tired, whiney kid. I was very skinny and of short stature. I was a very picky eater—I never liked sandwiches or pasta (strange for a kid), and my favorite foods were potatoes and corn/rice-based cereals. I loved hot dogs, but I ate them wrapped in a paper towel, since I refused to eat a bun! I can remember my mother’s frustration that I didn’t like bread. What does a child bring for school lunch when they refuse to eat sandwiches? (Now, in retrospect, I realize my body was telling me what foods I should stay away from!)
I developed psoriasis at age 12. I had scoliosis. I had a cardiac septal defect. I was the small, frail sibling who had medical conditions and was always tired. But I didn’t have gastrointestinal symptoms, other than periodic constipation.
Years went by, I conceived and delivered 3 healthy, full-term children with no complications, and I had no serious medical problems. At the age of 45, I went to my internist for a routine annual physical. I asked my doctor to prescribe a bone-density scan since I had read that being petite and fair put me at increased risk for osteoporosis. My doctor didn’t want to do it, he told me that it did not need to be done until after age 50. Yet I insisted and he finally agreed to do it as a baseline test. To his surprise and mine, the test was positive, revealing that I indeed had osteoporosis! He didn’t seem particularly concerned, he just told me to exercise and take calcium supplements.
But I pursued. I asked my internist to send the report to my gynecologist. Upon receiving it, my gynecologist called me and she said I should see an endocrinologist who specializes in osteoporosis, because such a diagnosis is not normal in premenopausal women. She felt that my osteoporosis might be caused by another medical condition. So the endocrinologist ordered blood tests for a laundry list of things, and the celiac test came back positive! I couldn’t believe it, the same disease I had had as a baby that I had supposedly outgrown!
I called my mother and cried. But she has type 2 diabetes, controlled by diet, and has been on a carb-free diet for many years now. She reminded me that at least I could still eat many of the foods that she can’t (sugar, potatoes, corn, rice, etc). Hearing that put it all in perspective for me. I realized how lucky I was that I was diagnosed and can prevent further health problems down the road. And it was pretty much a fluke that I was diagnosed. if I hadn’t been my own advocate and insisted on that bone-density scan, the whole process of my diagnosis wouldn’t have snowballed the way it did.
My gastroenterologist who did my endoscopy was not full of information. He basically referred me to the Internet to learn more. I think, that by the time we sat down to talk about my biopsy results, I had learned more about a gluten-free diet from my research than he could have provided. But he did advise me to have my children tested.
Two of my 3 children tested positive (one of whom had been totally asymptomatic). My third child tested positive for the celiac gene, but repeatedly has tested negative for the disease so far (we will continue to test annually). My siblings tested negative as well, but one them has a child with celiac. It seems to be a strong gene in our family!
We’re all dealing with the diet quite well now. Of course, it helps to have family members on the same diet, so none of us feels alone. My children, who are both teenagers, accepted their diagnoses relatively well since they had already seen that I was managing. Like any other change in routine or lifestyle, we got used to it. We learned self-control when we’re confronted with a smorgasbord of desserts. We learned to acquire a taste for gluten-free, substitute foods (of which there is an abundance available now!). We learned to order food naked in restaurants, to avoid breading or sauces that may contain wheat flour. We learned to be sure that we don’t go to a party on an empty stomach, in case the selection of safe foods is too limited. We all learned to vigilantly read labels of all processed foods that we buy. And I also learned the fine art of baking, something I never had had much interest in before. Now, with my pantry cabinet stocked with soy flour, brown rice flour, potato starch, xanthan gum, tapioca starch, millet flour, sorghum flour, and corn starch, I can convert any wheat flour recipe into a delicious gluten-free one!
Although I hadn’t suffered the severe gastrointestinal symptoms that many other diagnosed celiacs have, I had symptoms that I hadn’t been aware of. For instance, I was so often exhausted by late afternoon, that I was too tired to finish cooking dinner for my family. I had always thought this was a side effect of motherhood. But after going on a gluten-free diet, I never have to lie down during the day anymore!
I’ve met many people with celiac, or with celiac family members. We instantly form a common bond, almost cult-like, sharing stories, favorite foods, etc. And my kids are tired of hearing me recommend to many people that they get tested. But the more I learn about celiac, the more I realize that so many more people could be helped if only they were diagnosed.
Maybe we can’t have our gluten flour cake and eat it too, but we can take control of our well-being.
Does this story sound similar to your or a family members? You might have celiac disease. Find out now, take our celiac disease symptoms checklist.