Celiac Disease Is The Great Pretender

By Susan Coney

Do you have an irresistible craving for a warm, chewy, chocolate chip cookie, or a huge slice of gooey pie or are you enticed by a steaming hot plate of pasta? If you are among the 1 out of 133 people who suffer from celiac disease, these tempting comfort foods are a diet no, no.

Celiac disease is a digestive disease that damages the small intestine and prohibits proper absorption of nutrients from food. People suffering with celiac disease have a genetic intolerance for foods which contain gluten, a protein found in wheat and other grains.

 Gluten from wheat, barley, rye, and other grains trigger an immune response which in turn causes the protein in the gluten to destroy the villi in the small intestine. The villi are the vehicles which allow nutrients to be absorbed by the body.

Classic symptoms of the disease are chronic inflammation of the upper portion of the small intestine, vomiting, diarrhea, gas, cramping and weight loss; which is why it is commonly mistaken by physicians for irritable bowel syndrome. The disease may also present itself with symptoms such as constant fatigue, joint pain, or in the form of a painful skin rash known as dermatitis herpetiformis.

 A generation ago doctors were told that the disease was extremely rare and that as a practitioner they may never see a case of it. Alessio Fasano, a gastroenterologist, and director of celiac research at the University of Maryland School of Medicine, however, states that the condition is becoming more and more prevalent. And, because about 40 percent of people with the disease are symptom-free, the disease can cause damage such as loss of bone mass, infertility, anemia, and depression due to the fact that the body is actually being starved of valuable nutrients.

Most people are unaware that they have the disease because either they have no symptoms or it shows up masked as other afflictions — which is why it is known as the great pretender. Stephen P. James, head of digestive disease research at the National Institute of Health (NIH) said that doctors should think of celiac disease more often than they do.

 At a recent conference held by the NIH a panel of experts estimated that as many as 3 million Americans suffer from celiac disease. A survey of 1,600 people who participated in celiac support groups across the United States found that the average person with the disease went for 11 years before being properly diagnosed.

Left untreated celiac disease can be life threatening. Celiacs have difficulty absorbing nutrients which leads to malnutrition, anemia, osteoporosis, tooth enamel defects, pancreatic disease, organ disorders, and seizures due to inadequate absorption of folic acid. Untreated the disease may cause increased risk for certain types of cancer and diabetes.

Celiac disease may appear at any stage in life. Many people appear symptom free for years only to have the disease become active for the first time after a severe emotional trauma, surgery, pregnancy or childbirth. Infants and children with the disease often exhibit failure to thrive, delayed growth, vomiting, gas and diarrhea.

Dr Joseph Fiorito, chief of gastrointestinal disease at Danbury Hospital, said that celiac disease is an auto-immune disease that has a genetic component. While anyone may get celiac disease it is more prevalent in the Irish and Romanian populations.

 “We see more patients with it now because we are on the lookout for it,” he said. “Generally the most common symptom was diarrhea, now we recognize that other symptoms such as iron deficiency and osteoporosis present themselves as a result of celiac disease. We have a much easier method of diagnosing now that we have a blood test that is very reliable. If the results are positive then we confirm the diagnosis with a biopsy of the small bowel.”

The procedure for taking the biopsy is relatively painless. A long, thin tube called an endoscope is inserted through the mouth and stomach and into the small intestine where a small tissue sample is obtained to be sent to a laboratory for testing.

Dr Fiorito said that the disease is treated by a change in diet. Patients must maintain a gluten-free diet.

“Diet is a mainstay, all side effects can be mitigated through a proper diet, allowing for proper nutrient absorption,” he said.

 Dr Fiorito stressed that celiac disease must be taken seriously because it can lead to great damage to the body.

“Now there are many avenues in diet, many more choices for a varied diet,” he said.

Newtown resident Ivy Pearson suffers from celiac disease. She was first diagnosed with problems as an infant when she seemed to out grow the condition. Then three years ago after a stressful event in her life she became very ill.

“I personally get violently ill and vomit. I get terrible stomach pains. There is nothing you can take for it; basically it has to get out of your system,” she said.

“My father suffered for years with colitis and then developed non-Hodgkins lymphoma, now looking back he probably had celiac disease. It is a genetic disease. I have had my two children tested and they were negative, but I will keep an eye on them,” she said.

“My frustration is not being able to eat what everybody else can eat. It gets old after a while. It’s very hard to go out to eat, it’s chancy. I always try to develop a good rapport with waiters when I go out to eat. Outback Restaurant has been very good about it,” Ms Pearson said.

“I was in denial for a while. You don’t want to admit to yourself that you have it. My friends have been very supportive and they try to understand. Many will go out of their way to try to prepare foods I can eat but it helps to talk to someone who has the same problem,” she said. She attended a support group in Danbury which recently disbanded but has continued to find support from others through emailing.

“We vent and support each other by email. Also there is a very family oriented group, The Greater New Haven Celiac Group, that has been very helpful,” Ms Pearson said.

Ms Pearson said that she gathered a great deal of information through websites. “I try to attend patient education days at area medical facilities. It helps to keep up to date with new products and samples. It’s nice to find new things like a new breakfast bar that you can eat,” she said. “I buy about half of my food at health food stores, but it is more expensive. I shop at Chamomille Natural Foods Store in Danbury. They are very knowledgeable and the owner’s wife bakes delicious gluten free muffins and cookies,” she said.

Tanya Cutolo of Newtown has a young daughter, nine-year-old Morgan, who suffers from celiac disease. Ms Cutolo had a difficult time finding a physician who would take her daughter’s symptoms seriously. Ms Cutolo, the mother of two, knew that Morgan was not growing as she should.

 “Morgan always looked sickly. She wasn’t growing, just a little bit every year,” Ms Cutolo said. “She always had headaches, stomachaches, suffered from mood swings, and had dark circles under her eyes.”

Ms Cutolo had taken her to a few doctors, none of which could make a proper diagnosis of Morgan’s condition. One day a relative who knew of Morgan’s symptoms sent Ms Cutolo an article about celiac disease and everything seemed to click from that point. Even then she had to convince the doctors to take her seriously and test Morgan for the condition. Even when the blood test confirmed that Morgan did indeed suffer from celiac disease one of the physicians they met with said, “You don’t want your daughter to be on that strict diet for the rest of her life.”

 Ms Cutolo said that because there is no quick fix or pill that can be prescribed many people tend to go toward a holistic approach to treating the disease. She continued to do more research and put her daughter on a gluten free diet. Today Morgan is symptom free and thriving, gaining weigh regularly since being diagnosed almost two years ago.

When Morgan first learned she had celiac disease she did an independent research project about the disease and presented it to her classmates as a way to inform them about her condition. Morgan said, “My friends all know and sometimes they will read ingredients to me. My classmates are very protective of me. The hardest things are probably being different from everybody else. Like at birthday parties I can’t eat pizza, cake or cupcakes like everybody else. Sometimes my friends will remember and they will bring me something special that I can have instead, like Skittles.”

Ms Cutolo and her daughter Morgan are both active members of The Greater New Haven Celiac Group, which is the largest support group in Connecticut. This past May the group sponsored a walkathon to raise awareness and funding for celiac research. Morgan Cutlolo won a scholarship to attend a summer camp for children with celiac disease. The scholarship money was made possible by funds raised at the walkathon. The group distributes a very informative newsletter, offers support and resources and holds all types of family oriented activities such as a Christmas cookie exchange and a Halloween party, all with gluten free foods.

Following a gluten-free diet is challenging. Obvious foods that should be eliminated from the diet are pasta, pizza, breads, and cereals. Other surprising offenders are baked beans, beer, licorice, canned soups, creamed vegetables, dry roasted nuts, any type of fried food (if coated in flour), gravies, sauces, tomato sauces, dips, ketchup, mustard, certain cold cuts, malt vinegar, and nondairy creamers just to mention a few. Another overlooked and seemingly harmless source of gluten is the glue flap on an envelope.

Celiac suffers must also be on the look out for cross contaminated foods, which are foods [that contain gluten] that might come into contact with gluten-free foods in the manufacturing, processing or preparation of the foods. People with celiac disease need to be vigilant about reading product labels.

The good news for people afflicted with celiac disease is that it can be controlled through diet. Also many specialty shops and online shopping offer products such as bread, pizza crusts and pastas that are gluten free. Some even sell flour blends so that pancakes, waffles, cookies and brownies may be made at home. Morgan Cutolo raves about the gluten free products that are available such as Pamela’s pancake, cookie and brownie mixes and Amy’s macaroni and cheese.

There continues to be more information about celiac disease available as well as support groups to help people suffering with the disease. Ivy Pearson continues to remain optimistic. “I’m hoping in the future they will develop a vaccine or a cure for the disease,” she said.

For more information you may contact Beverly Lombardi at 203-272-9757 or log on to www.connceliac.com/newhaven.htm.