Both my husband and I suffer from celiac disease, the auto-immune ailment where exposure to gluten damages your intestines. (Gluten is the protein in wheat, barley and rye that gives these grains their unique consistency.)
According to the Celiac Disease Foundation, one out of every 133 people in our country has the disease (though nine out of 10 people with the disease don’t know it). In addition to bowel problems, celiac sufferers can exhibit a wide range of symptoms (unexplained weight loss, bone and joint pain, canker sores, pale and smelly stool) – or they may exhibit no symptoms at all.
Both of us had symptoms beginning in infancy, with bowel troubles alternating between diarrhea and constipation. As I grew up, no one could figure out why I was always 10 to 20 pounds underweight, with occasional bouts where I would double over with severe abdominal pain, routinely diagnosed under the catch-all phrase “spastic colon.” My husband fared better, receiving an early diagnosis that allowed his mother to put him on a gluten-free diet as a child.
Determining whether you had the disease can be challenging. Blood tests and biopsies can help confirm the diagnosis. In my case, I simply went on a gluten-free diet two years ago and felt good almost immediately, for the first time in decades. As an adult, my husband began to eat gluten again and then began to experience a skin rash. It turned out to be dermatitis herpetiformis, another hallmark of celiac that does not appear in children.
Going gluten free
Treatment requires going on a gluten-free (GF) diet for life, and that’s easier said than done. In addition to the gluten in breads, pies, cakes, cookies and crackers, the offending substance can be hidden in food products ranging from baking powder to soy sauce to vanilla. Cooking with wheat flour can allow gluten to float in the air in your kitchen, coating plates and eating utensils.
Eating out is always a challenge. Few places specifically accommodate people with celiac by offering dishes that are reliably gluten free. And servers and cooks vary in taking requests for gluten-free food seriously.
People with celiac (also called sprue) in the Lansing area benefit from having a tremendously active support community that meets once a month at the Community of Christ Church. Greta DeWolf and her husband Nicholas work tirelessly to share information through the local chapter of the Michigan Capital Celiac/DH Group. Caring for a child with celiac is daunting, and the local chapter has a Cel-Kids group.. They also sponsor an annual celiac kids camp. The Lansing chapter networks with the Celiac Sprue Association.
Videos that can help
Making Gluten-Free Baking Powder (who knew?)
Gluten-Free Pizza at Guido’s*
Friendly owner Steve at Guido’s is my son, but I would rave about the GF pizzas even if he weren’t. (I highly recommend the Bucqueroux, which features tomato, spinach and feta.)
Links to other sites:
- Michigan Capital Celiac/DH Group – Our local chapter.
- Celiac Sprue Association – Our local chapter is part of this network.
- Cel-Kids – For young people and their families.
- National Foundation for Celiac Awareness – Includes a celiac symptom checklist.
- Celiac Disease Foundation – Excellent information, including how to sign up for research studies.
- Medline Plus – Loads of links from the U.S. National Library of Medicine and the National Institutes of Health.
- Mayo Clinic – Information on diagnosis and treatment.
- MedicineNet.com – Loads of links on the disease.
- American Celiac Disease Alliance – A coalition of groups that offer information and assistance for people with this disease.
*Note to FCC: The Federal Communications Commission recently issued new rules requiring bloggers who review products divulge whether they receive any free goods and other benefits. All I can say is, I wish.
My son Steve gives me a free GF pizza at Guido’s, but that’s because we’re family, and not because of any reviews. Husband Drew often performs at Foods for Living, where he literally sings for our supper, including the occasional bag of GF Hearty Whole Grain Bread Mix. Bob’s Red Mill, which sells numerous gluten-free flours and mixes, has never sent me any free items, though eating gluten free is expensive because of the need to take special precautions in the growing and manufacture of gluten-free grains. (About.com reports that a study in Canada showed the cost for gluten-free products is $1.71 per unit compared $0.61 for foods that aren’t certified GF.)