Friday, September 11, 2009

The Expense of Eating with Celiac Disease

The Expense of Eating With Celiac Disease
from New York Times

Published: August 14, 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, 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 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 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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Tuesday, September 1, 2009

School Time!

It has been a year now since I started this blog. I wanted to thank you all for reading and emailing me with questions. It means a lot when I hear from you. It brightens my day when I recieve an email saying that they enjoy and learn a lot. Always feel free to email with any questions or worries.

School time is here again. If you have a newbie or experienced celiac child and trying to figure out what to make for his or her lunches. Here are some ideas that will keep lunch making easy.


Corn tortillas, with lettuce, tomatoes,mayo or salad dressing and Oscar Meyer meat.

Rice cakes makes a good peanut butter and jelly sandwich. Two plain rice cakes, put Jiffy peanut butter and Smuckers jelly in the middle. They maybe hard, but they taste great. You can even get apple Cinnamon rice cakes, which are good. Quacker ones are gluten free, but don't get the multi grain ones because they contain oats, which those oats are not gluten free.
You can use the rice cakes to make meat sandwiches too.

Oscar Meyers lunchables or any others are off limits, but you can create your own.
Glutino Crackers are the best. To make it more like the real thing, purchase a thinker meat. Get a small cookie circle cutter or shapes. Try to find a cookie cutter that is the size of the GF cracker. You can also use the cookie cutter to cut out the cheese.
For a side you can put applesauce.
For dessert you can put a fun size Hershey, Reeses.

A pizza lunchable- you can cut corn tortillas into a smaller circle. Or Gluten Free pizza crust mix or cut Kinninnick's frozen pizza crust.
Put canned tomato sauce and cheese on the side.

Hot dog type lunchables- you can use corn tortillas,Kinninnick's frozen pizza crust to wrap the hot dog. Cut it in a small circle.
Oscar Meyer hot dogs, cut them into half.

With any of these lunchables that I mentioned, you can find a container that has one big space and then three side spaces. This makes it feel like your child will have a real lunchable.

Making lunchables with your child is a great way to spend time with them.

If your child would like hot lunch, I would suggest telling the school early. I would bring information about celiac. You can go to sites like Make sure they know about the contamination issue.

If you are a college student for lunches you can:

Chicken Salad- Mix celery, mayo or salad dressing, canned chicken, and use Glutino Crackers to dip. I puts cantaloupe in it.
Tuna Salad- can be done the same way like the chicken salad.

With any type of sandwiches you can use corn tortillas, make your own bread, find a bakery that bakes gluten free in a clean contamination free environment.

If you are in the Grand Rapids I would recommend Bread Stone Bakery.

Hope this helps.

Feel free to email me with any questions

Keep watch for the 2009 Halloween candy list which will be posted soon.

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