Living With Celiac

I do not have Celiac, but as a Registered Dietitian I have worked with many families newly diagnosed. So I have an interest in related news and internet postings. Here is one that caught my eye today.

The Expense of Eating With Celiac Disease

By LESLEY ALDERMAN, NY Times. Posted Aug 15, 2009

YOU would think that after Kelly Oram broke more than 10 bones and experienced chronic stomach problems for most of his life, someone (a nurse? a doctor?) might have wondered if something fundamental was wrong with his health. But it wasn’t until Mr. Oram was in his early 40s that a doctor who was treating him for a neck injury became suspicious and ordered tests, including a bone scan.

It turned out that Mr. Oram, a music teacher who lives in White Plains, had celiac disease, an underdiagnosed immune disorder set off by eating foods containing gluten, a protein found in wheat, rye and barley.

Celiac disease damages the lining of the small intestine, making it difficult for the body to absorb nutrients. Victims may suffer from mild to serious malnutrition and a host of health problems, including anemia, low bone density and infertility. Celiac affects one out of 100 people in the United States, but a majority of those don’t know they have the disease, said Dr. Joseph A. Murray, a gastroenterologist at the Mayo Clinic in Minnesota who has been studying the disease for two decades. The disease can be detected by a simple blood test, followed by an endoscopy to check for damage to the small intestine.

Seven years after receiving his diagnosis, Mr. Oram, who is married and has one daughter, is symptom-free, but the cost of staying that way is high. That’s because the treatment for celiac does not come in the form of a pill that will be reimbursed or subsidized by an insurer. The treatment is to avoid eating products containing gluten. And gluten-free versions of products like bread, pizza and crackers are nearly three times as expensive as regular products, according to a study conducted by the Celiac Disease Center at Columbia University.

Unfortunately for celiac patients, the extra cost of a special diet is not reimbursed by health care plans. Nor do most policies pay for trips to a dietitian to receive nutritional guidance.

In Britain, by contrast, patients found to have celiac disease are prescribed gluten-free products. In Italy, sufferers are given a stipend to spend on gluten-free food.

Some doctors blame drug makers, in part, for the lack of awareness and the lack of support. “The drug makers have not been interested in celiac because, until very recently, there have been no medications to treat it,” said Dr. Peter Green, director of the Celiac Disease Center at Columbia University. “And since drug makers are responsible for so much of the education that doctors receive, the medical community is largely unaware of the disease.”

As awareness grows and the market expands, perhaps the prices of gluten-free products will come down. Meanwhile, if you suffer from the disease, here are some ways to keep your costs down.

When people first learn they have celiac disease, they tend to stock up on gluten-free versions of breads, crackers and pizza made from grains other than wheat, like rice, corn and buckwheat. But that can be expensive and might not even be that healthy, since most gluten-free products are not fortified with vitamins.

“The most important thing to do after being diagnosed is to get a dietary consultation,” Dr. Murray said. With planning, you can learn to base your diet on fruits, vegetables, rice and potatoes. “I have some patients who rarely use those special gluten-free products,” he said.

Get in the habit of reading labels, advises Elaine Monarch, executive director of the Celiac Disease Foundation, a nonprofit organization in Studio City, Calif. Soy sauce, for instance, often has wheat protein as a filler. But Ms. Monarch found a brand of light soy sauce at her local grocery with no wheat that cost much less than one specifically marked as gluten-free. “There are often alternatives to specialty products, but you have to look,” she said.

Gluten-free bread is more expensive than traditional bread and often less palatable. And that holds for many gluten-free items. Some people, including Mr. Oram, end up buying a bread machine and making their own loaves. Nicole Hunn, who cooks gluten-free meals for her family of five and just started the Web site glutenfreeonashoestring.com, avoids mixes, which she says are expensive and not that tasty, and instead bakes with an all-purpose gluten-free flour from a company called Bob’s Red Mill, which can be used in place of wheat flour in standard recipes.

If you’re too busy to cook, look for well-priced gluten-free food at large chains like Whole Foods Market and Trader Joe’s. “Trader Joe’s now carries fantastic brown rice pasta that is reasonably priced and brown rice flour tortillas that can sub for bread with a variety of things,” says Kelly Courson, co-founder of the advice site CeliacChicks.com. Ms. Courson put out a Twitter message to her followers and learned that many were fans of DeBoles gluten-free pastas, which can be bought in bulk on Amazon, and puffed brown rice cereal by Alf’s Natural Nutrition, just $1 a bag at Wal-Mart.

Finally, it may be worthwhile to join a celiac support group. You can swap cost-cutting tips, share recipes and learn about new products. Many groups invite vendors to bring gluten-free products to meetings for members to sample — members can buy items they like at a discount and skip the shipping charges. Support groups typically have meetings, as well as newsletters and Web sites where you can post questions. Groups to check out include the Celiac Disease Foundation and the Gluten Intolerance Group of North America.

Finally, if you itemize your tax return and your total medical expenses for the year exceed 7.5 percent of your adjusted gross income, you can write off certain expenses associated with celiac disease. You can deduct the excess cost of a gluten-free product over a comparable gluten-containing product.

Let’s say you spend $6.50 on a loaf of gluten-free bread, and a regular loaf costs $4; you can deduct $2.50. In addition, you can deduct the cost of products necessary to maintain a gluten-free diet, like xanthan gum for baking. If you mail order gluten-free products, the shipping costs may be deductible, too. If you have to travel extra miles to buy gluten-free goods, the mileage is also deductible. You’ll need a doctor’s letter to confirm your diagnosis and your need for a gluten-free diet, and you should save receipts in case of a tax audit.

Do you have a flexible spending account at work? Ask the plan administrator if you can use those flex spending dollars on the excess cost of gluten-free goods — many plans let you do this. For more on tax deductions, go to the tax section of the Celiac Disease Foundation’s Web site.

Yes, managing the disease is a hassle. But untreated celiac disease can wreak havoc with your health. A study published in the July issue of the journal Gastroenterology found that subjects who had undiagnosed celiac were nearly four times as likely to have died over a 45-year period than subjects who were celiac-free.

“Sometimes I resent how time-consuming it is to cook from scratch,” Ms. Courson of CeliacChicks.com said. “But I remind myself that my restrictions actually help keep me in line, more than the next person with unhealthy foods readily available.”
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Yes, if you are diagnosed with Celiac, the most important thing you can do is take the time to sit down with a Registered Dietitian (RD) to really learn about Gluten-free (GF) living. Make sure the RD is experienced and comfortable working with the GF diet and he/she will direct you to the proper books and websites for additional help. Physicians who just hand you a piece of paper or tell you to look it up on the internet are doing you a disservice. While there is a slew of good information available for self-motivators/self-studiers, there is also potential for misinformation.

The other issue I have noticed is a increase of 'self-diagnosed' folks beliving they are wheat-intolerant or that GF diet will change behavior. Wheat allergy is not the same thing as Celiac (although sometimes it's easier to explain the diet restriction to a layperson by using the term "food allergy"). Living GF isn't always easy, make sure you are properly diagnosed before you embark on the GF diet. Because once you are Celiac, you will always be Celiac and the GF diet is a lifetime (no cheating) committment to your health.

Some additional links:
University of Maryland Center for Celiac Research
Celiac Sprue Association
Gluten Free Living Magazine
Living Without Magazine
Whole Foods Market Gluten-Free Information
Trader Joe's Labels & Lists
The Gluten-Free Diet, by Shelley Case, RD