By Elaine Thompson
TELEGRAM & GAZETTE STAFF
No matter what he did as a young man, Michael D. Peterson just couldn’t gain weight. At 5 feet 10, he only weighed 118 pounds. Although a long-distance runner, he had little energy and was constantly having stomach aches.
As he got older, his doctor suggested that he drink beer and eat lots of bread to put on weight. But, just like the toast and honey his coaches had him eat before a meet, that didn’t help.
“Everything he prescribed was just the opposite for me. It was actually doing me in,” said Mr. Peterson. “You could imagine, I was almost like a skeleton.”
At one point, Mr. Peterson said, his doctor suspected that he might have stomach cancer. But then his doctor inherited a patient who had moved to Massachusetts from California and had been diagnosed for the same long-term symptoms as Mr. Peterson.
“My doctor looked at my chart and said, ‘I’m 90 percent sure that you have celiac disease,’” recalled Mr. Peterson. An internal biopsy of his small intestines confirmed the diagnosis. When he stopped eating foods with gluten, he gained 30 pounds in six months and his energy increased.
“I’ve been diagnosed with this for almost 30 years,” said the 62-year-old Worcester native, who resides in Mendon and serves on the Blackstone Valley Regional School Committee. “Quite frankly, I was one of the lucky ones that was diagnosed and it was a little bit by accident and a little bit good luck.”
Celiac disease — also known as celiac sprue, gluten-sensitive enteropathy and notropical sprue — is a genetic autoimmune digestive disease that prevents people from being able to tolerate gluten, a protein found in wheat, barley and rye. Gluten is also found in some medicines and vitamins, and other products such as stamp and envelop adhesive.
When someone with the disease eats a product with gluten, the small intestines are damaged and the ability to absorb nutrients is affected.
Since the cause of the disorder is still a mystery, there is no cure. The only treatment is a lifetime of eating non-gluten foods, which can be very expensive. For instance, Mr. Peterson said, a loaf of non-gluten bread is 40 percent smaller than a regular loaf and costs three to four times more.
State Sen. Richard T. Moore, D-Uxbridge, recently filed a bill that would give diagnosed celiac sufferers up to a $5,000 state income tax deduction for the cost of gluten-free food that is in excess of the cost of food containing gluten.
Mr. Moore said his late mother-in-law suffered with diarrhea and not being able to digest food properly, but was not diagnosed with celiac disease until three years before she died in her 70s about five years ago. She was not able to take Communion the last few years of her life because the wafers contained gluten. Mr. Moore said his wife, Joanne, and her sister are showing some predisposition to the disorder.
“Not so much in restaurants, but in grocery stores, there’s a higher price to stick to the diet. We thought it would warrant the tax benefit so they can accommodate to some degree the higher cost of complying with the diet,” said Mr. Moore.
There is already a similar federal income tax deduction, but not many people are able to use it, according to Marilyn G. Geller, chief operating officer of the California-based Celiac Disease Foundation.
“In order to take the federal medical deduction for gluten-free foods, only the amount in excess of the cost of a normal diet may be deducted. Out-of-pocket medical expenses must exceed 7.5 percent of your adjusted gross income. For most people, this eliminates the deduction,” she said.
People also find it cumbersome to keep track of receipts of all their gluten-free food purchases and adequately document the cost of comparable non-gluten-free foods.
Ms. Geller said that since the 1950s, when little was known about celiac disease, there has been a fourfold increase in the prevalence. Based on worldwide screenings, one in 133 people has the disorder, making it the world’s most prevalent autoimmune disorder.
In the United States, only one in every six people with the disorder have been diagnosed. About 2.5 million people have not been diagnosed, she said.
Because there are more than 200 symptoms, many people with celiac disease have been misdiagnosed, she said.
The most common symptoms in adults are osteoporosis, anemia and infertility. In children it’s gas and stomach aches, she said.
“It takes on average six to 10 years of doctors telling you that you have other things before being diagnosed,” she said. “The silly thing about it is you can be diagnosed easily with a blood test. Then depending on what happens with the blood test, your doctor may recommend you have an endoscopy.”
Ms. Geller said the Celiac Disease Foundation, founded in 1990, was instrumental in putting together the serology workshop that led to today’s blood test in the early 1990s.
The foundation’s mission is to work with the medical community to promote research and education so doctors will understand the disease. It is working with the Federal Drug Administration to promote food safety and a proposed ruling on the standard of labels on gluten-free foods.
Kimberly Mirsky, a registered dietician with Reliant Medical Group in Worcester, coordinates a support group that meets about three times a year. The average attendance is from 20 to 40 people.
The number of people with celiac disease is growing but the need for support groups is decreasing because there is so much information now on the Internet.
Overall, the most common things she hears people with celiac disease speak about is the cost of food; access to foods, especially if you don’t have a lot of cooking skills; and acceptance from family and friends that the condition is real.
Typically, for newly diagnosed people she reviews the principles of a gluten-free diet, including the need to eliminate wheat, rye and barley and some oat products. She also emphasizes having diets of gluten-free foods, including fruits, vegetables, fresh meat, potatoes, rice and corn.
“I like to emphasize what they can continue to eat so they don’t feel like they have to start their diet from the ground up,” she said.