Laura A. Stokowski shares 10 things she wishes her doctor had told her when she was first diagnosed with celiac disease. 1
“I was diagnosed with celiac disease as an adult, a few years after having my second child. A low iron level on routine blood work prompted my gastroenterologist to astutely deduce that I might have celiac disease. However, after confirming the diagnosis, he told me very little other than to follow a gluten-free diet. As a healthcare professional, I investigated the implications of a gluten-free diet to understand it better. Here are 10 things I wish my doctor had told me when I was first diagnosed with celiac disease.”
1. Gluten-free substitutes are about twice as expensive as standard foods. They are more costly to produce and are not sold in high enough quantities for low prices.
2. Gluten-free substitutes are less nutritious and more fattening than equivalent wheat-based foods. There is nothing “healthy” about gluten-free food substitutes. Most gluten-free substitutes are also made with rice flour, thereby exposing me to an excess of arsenic in my diet. No thanks.
3. “Gluten-free” is not always gluten-free. The popularity of the gluten-free diet for those without celiac disease has prompted a wave of new gluten-free offerings. Famous pizza chains have even started to offer gluten-free pizza, albeit with heavy disclaimers that their gluten-free products are not appropriate for people with celiac disease. The reason? They cannot prepare the foods in a completely gluten-free environment, so it is possible that a few wheat molecules can contaminate the so-called gluten-free food during preparation. If you are not overly sensitive, you may be able to get away with eating these foods, but they are not for the gluten-intolerant.
4. Focus your diet on foods that are naturally gluten-free, not gluten-free substitutes. This took me a while to learn. When I first went gluten-free, my inclination was to follow my usual diet but substitute gluten-free products for the foods I used to eat. After sampling gluten-free breads, pizza crusts, and pasta, I found that, in most cases, the taste was not worth it. Although gluten-free foods have improved, I have found that a sandwich is best eaten in a lettuce wrap.
5. After being gluten-free for a period of time, you will not tolerate gluten; eating any significant quantity will make you very sick. I was not prepared for this and had a learning experience when a restaurant worker mixed up the special-diet pizzas, giving me what I thought was a gluten-free pizza. It wasn’t. I should have known by the excellent taste, but I surely knew when an ambulance was called to take me to the hospital for severe vomiting, diarrhea, and an inability to walk or even stand up. After another experience with a major inadvertent gluten-ingestion episode, I also now carry promethazine (Phenergan®) when I eat outside of the home. Although I have had very few accidental ingestions, I do not wish to be rushed to the hospital when they occur.
6. When I began to investigate the gluten-free diet, I kept seeing this pithy warning: “A molecule is as bad as a mouthful.” It terrified me at first, but I realized that I would never be able to eat out or travel if I worried incessantly. So I still use the family toaster and bake things (for other people) with wheat flour. I am as careful as I can be about what I eat. I have never had clinical symptoms from unknown trace exposures, but I am aware that they could be harming me.
7. How will I know whether my diet is truly gluten-free? I asked my gastroenterologist; he was surprised and responded that people usually wanted to know how much gluten they could get away with eating. I eventually underwent another endoscopy to find out that my villi had normalized, the mucosa had healed, and I had no evidence of celiac disease on biopsy. That does not mean that I do not have celiac disease, but it is reassuring that my diet is not harming me.
8. The world does not understand celiac disease. This was obvious from the start. Often, when I told a waitress in a restaurant that I had celiac disease and needed gluten-free food, she would immediately notify the manager, who would show up at my table to discuss my order. They tended to equate celiac disease with a life-threatening peanut allergy—or they assumed that I was a health nut who thought the gluten-free diet was healthy but not actually necessary. I gradually learned not to mention “gluten-free” to the waiter but instead ask about specific ingredients in the foods. These days, you will often see “gluten-free” written on restaurant menus; but even so, I have had salads brought to me with regular croutons or bread on the side.
9. Having been diagnosed as an adult, for many years I was not absorbing calcium and other nutrients and thus am at high risk for osteoporosis. If I had known about my osteoporosis risk, I might have sought ways to reverse it earlier. Instead, it was identified many years after my celiac diagnosis—and no one told me that being on a gluten-free diet was not going to be enough to reverse my long-standing calcium deficit.
10. Celiac disease is an autoimmune disorder. This is widely known now, but it was not framed this way when I was diagnosed. My own investigations uncovered this fact, but the science was still fuzzy on the significance. Was the gluten-free diet the only way to protect myself from complications of celiac disease (eg, other autoimmune diseases or lymphoma)? Should I be screened at regular intervals for them? No one advised me about these complications or discussed their importance with respect to the gluten-free diet—in other words, would staying on the diet lower or reverse my risk?
Laura Stokowski is a graduate of the University of Michigan School of Nursing (BS and MS degrees). She specialized in neonatal intensive care throughout her career at hospitals in the United States, from North Carolina to Alaska, and also in Heidelberg, Germany. Laura was on the editorial board of Advances in Neonatal Care for 13 years before joining Medscape in 2015.
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