Celiac disease is a potentially fatal condition triggered by eating the protein gluten that is found in wheat, rye and barley (and any food or ingredient that has even miniscule amounts of these grains). Eating gluten causes an immune reaction and damage to the small intestine, leading to abdominal pain, diarrhea and weight loss. Essential nutrients are not absorbed, which leads to a host of deficiencies including anemia, osteoporosis, infertility, skin rashes, joint pain and even certain cancers. Undiagnosed and untreated, celiac disease quadruples the risk of death. Treatment is avoiding anything with gluten.
It's hard to believe that it's been 10 years since my husband was diagnosed with celiac disease. He has carefully followed a gluten-free diet and has thrived. I asked my husband what has helped him be successful with this life-changing disease.
Q: What did you think when you were diagnosed?
A: I was relieved. I thought I was lucky that I had a disease that I could do something about and that I could live a long time. What was really important was that I took responsibility for deciding what I'd purchase and put into my mouth. This forced me to take charge — and it gave me confidence that I could do it.
Q: What steps did you take to become gluten-free?
A: I tried to learn as much about the diet as possible. There are resources including websites and celiac disease support groups that provide lists of manufacturers who make gluten-free foods including brand names of items. We also opted to make our kitchen gluten-free. This made me feel safe — that I could eat anything at home without thinking too much about it. (Note: Not all families may decide to do this. It may be more practical to designate which cupboards or part of the refrigerator is gluten-free.)
I looked hard for and found good-tasting everyday foods (breads, crackers, pasta). I especially like rice crackers and pasta — they're even less expensive than the wheat-containing ones. It took a while to find gluten-free bread that had good taste and texture. Over the years food manufacturers have really come through with great gluten-free products.
Q: What remains a challenge?
A: Eating out. I don't like having to work through the menu with waiters and chefs to determine what might be gluten-free. You also wonder if all ingredients used are gluten-free, you wonder if the food is cooked and handled so there is no cross-contamination. It's also no fun when food is made so plainly that there is no taste. What is a joy is to find restaurants that have taken training and become certified gluten-free.
I'm also concerned about a recent study that showed cross contamination of naturally gluten-free grains. Of the 22 grains samples that are assumed to be naturally gluten-free, 7 contained gluten at levels higher that the proposed Food and Drug Administration cut-off. Our food supply — every step of the way from farm to table — is complex. We need to find out where cross contamination occurs.
I'm looking forward to the FDA releasing federal standards for labeling foods gluten-free. Currently it's voluntary for food companies to test their foods for presence of gluten, and they don't have to take cross contamination into account.
Q: Anything else?
A: It's amazing how quickly I felt better going gluten-free. I felt better in less than a week — and I still feel great.
If you have celiac disease — or any other medical condition treated by diet — what has worked for you? Share your thoughts.
Jan. 11, 2011