GF bread I made from the mix in the video
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.
Carraba’s offers a gluten-free menu. Guido’s Pizza in Okemos offers numerous gluten-free specialties. (See the video below.)
Local support
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 Hearty Whole Grain Bread* - The Bob’s Red Mill mix is available at Foods for Living in Okemos and Better Health in Frandor
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.)
We just launched our website http://www.gfhomecooking.com to help people get started on
cooking Gluten Free. We hope you will find the time to take a look at it. Thank you.
Thanks for giving our group publicity. Besides monthly meetings, we have an annual dinner at the MSU School of Hospitality where no one needs to wonder “what is in it.” We have an annual Gluten Free Vendor Fair with vendors, books, and cooking demonstrations. We publish a monthly Gluten Free Newsletter. We also have an annual Cookie Exchange, picnic, and more. Everyone is welcome to join. As we are a chapter of the Celiac Sprue Association, insurance is covered. We provide information from the annual CSA conference.
Bonnie, thanks for helping to raise awareness for celiac disease. It is frightening, but I hear the same story over and over again - patients visits a number of doctors, never get diagnosed correctly, eventually stumble across CD on the internet, and only then actively ask their doctor for a test. Articles likes yours are therefore extremely important!
You point out that gluten-free food is more expensive than the off-the-shelf equivalent that contains gluten. Very true. However, there is some relief: if you officially diagnosed with celiac, the IRS qualifies the additional costs for food expenses as medical expenses, which are tax deductible if they exceed 7.5% of your adjusted gross annual income. While 7.5% seems a lot, gluten-free food expenses over the course of an entire year add up quickly, so it makes a lot of sense to keep all receipts. If you haven’t done so in the past, 2010 is near and you should start this habit in the new year. The nice part is that if you purchase gluten-free food items on the internet, shipping costs are 100% deductible.
Last but not least - there are tons of helpful, active gluten-free bloggers out there, so browse around and bookmark a couple of their pages. Hope this was helpful.
What wonderful information. I had heard that food was deductible, but I have not been good about keeping all receipts. Beginning in January, I certainly will.
Thank you for the wonderful article. I want to add my praise of Steve at Guido’s Pizza in Okemos. He is a best friend of the GF community. I have a GF teenage son and Guido’s is 5 minutes from our house. But I would drive much farther and longer for his GF items - not just as good as “real” pizza, but pasta, sandwiches, stromboli, “motz” sticks and more! He is also opening a totally GF deli next door! This man goes way above and beyond the call of customer service and my family really appreciates it! No, I am not related to Steve in any way, nor do we receive any free products or compensation of any sort. Though I am really grateful for the coupons that arrive in the mail fairly frequently.