NYT Article- expense of eating w/celiac

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http://www.nytimes.com/2009/08/15/health/15patient.html

August 15, 2009

Patient Money

The Expense of Eating With Celiac Disease

By LESLEY ALDERMAN

YOU would think that after 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. ph 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. 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.â€

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. 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 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,â€

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.â€

Copyright 2009 The New York Times Company

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