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Edition:
September 02, 2010
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NEWS
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Celiacs’ health improves after diagnosis, but they must eat carefully
 | | Co-chairs of the second International Walk for Celiac Disease, May 3 at the mall area of the campus of Minnesota State University Moorhead are Stacey Juhnke (left) and Sandy Kohler, right. Stacey is holding her 2-year-old son Austin, who is celiac. Sandy is also celiac. |
May 3 Walk for Celiac Disease to alert public to
once-unfamiliar but
common condition
• by Jerry Barney
Sandy Kohler must carefully analyze the ingredients of everything she eats—or else she'd risk getting very ill.
Stacey Juhnke must carefully analyze the ingredients of everything her 2-year-old son Austin eats—or else she'd risk his getting very ill.
Sandy and Austin are among an estimated 2.2 million people in the United States—about one in 133—who are celiac. That means they don't dare eat anything with wheat, oats, rye or barley, or any derivative thereof—or else they risk getting very ill.
Sandy and Stacey are co-chairs of the second International Walk for Celiac Disease Awareness, known as "Making Tracks for Celiac" from 10 a.m.-1 p.m. May 3 at the mall area of the campus of Minnesota State University Moorhead. The International Walk was started last year by Rich Gannon, Oakland Raiders quarterback, whose daughter has celiac disease, to raise awareness and funds for research.
The purpose of the mile-long walk is to call attention to a condition about which very few people know, but which so many people have, at least in its latent form. There will also be a health fair, silent auction including items signed by Rich Gannon, and gluten-free refreshments.
Proceeds (after expenses) are to go toward an educational conference Oct. 4 in Fargo and to the Center for Celiac Research, Baltimore.
Celiac disease is an inherited autoimmune disorder which affects the digestive process of the small intestine. When a person who has celiac disease consumes gluten, a protein found in the above-mentioned grains, the individual's immune system responds by attacking the small intestine and inhibiting the absorption of important nutrients into the body.
Undiagnosed and untreated, celiac disease can lead to the development of other autoimmune disorders, such as osteoporosis, infertility, neurological conditions, and in rare cases, cancer.
(It is important to note some people can be gluten-intolerant without being celiac, Sandy noted. A person must have the gene to be celiac.)
So how ill can celiac get?
Well, symptoms can include diarrhea, vomiting, gas and abdominal pain. But the body's ability to absorb proper nutrients can cause other symptoms, too, such as extreme fatigue, weight loss and anemia.
Sandy, Moorhead, married to Frazee native Virgil Kohler, said she and her family thought she was dying before she was finally diagnosed as a celiac. After two months she sought a second opinion at Mayo Clinic, Rochester, which has a celiac specialist, Dr. Joe Murray, and proper measures were taken. Diagnosis is made based on blood tests, followed by a small bowel endoscopy which currently is essential for accurate diagnosis.
Austin was 18 months old when he was finally diagnosed with celiac disease in September, at the Pediatric Center at the University of Minnesota Hospital, Minneapolis.
He had been sick for about two months. His symptoms were distended belly, diarrhea, gas, vomiting, weight loss, irritability and lethargy.
"Austin was hospitalized twice," said Stacey, Fargo, granddaughter of
Velma Wirth, Frazee. "Between the two hospitalizations, he had numerous tests, upper GI study, X-rays, ultrasounds and CT scans of his belly and a CT scan of his head. It is very frustrating as a parent to see your child go through this change in mood, appetite (and) sleep patterns."
Celiac disease is hard to diagnose if the doctor is not familiar with it," emphasized Sandy.
Celiac disease symptoms can often be mistaken for other ailments, and that's dangerous, because the disease can raise the risk of gastrointestinal cancer if left untreated. The immune reaction damages structures called villi in the small intestine, which are vital for nutrient absorption.
She describes it using a floor-covering analogy.
"Your small intestine is supposed to be like a shag carpet, and catch everything," she said. "In a celiac person, it's more like linoleum."
In other words, she explained, the body does not absorb. Everything goes through. It can be like a malnutrition disease.
Celiacs can bloat if they eat grains with gluten, which was the case with
Austin, Stacey noted.
Celiacs not only can't eat anything which contains wheat, rye, oats or
barley, they shouldn't even eat anything which has had contact with them or has been cross-contaminated with them.
"You have to check virtually everything you put in your mouth," said Sandy. "When in doubt, go without."
Celiac disease is a hereditary genetic disorder, Sandy explained, and many people can have it in their genes but not necessarily be symptomatic of it until certain points in their lives. Something has to trigger it. People can have the gene and may never have it triggered.
In a landmark prevalence study, investigators determined 60 percent of children and 41 percent of adults diagnosed during the study were without symptoms.
This, too, she stressed, is a particularly hazardous thing. Damage can be done to the body, even when no symptoms appear.
Sandy said this was pretty much the case with her. Full-fledged symptoms (including severe fatigue, weakness and weight loss) didn't hit her until she was well into adulthood, and now she has many allergies and other problems as a result.
"Had I discovered it years and years ago, I wouldn't have the problems I have now," she said.
On the other hand, said Stacey, it was discovered (triggered by tonsillitis) and treated in Austin as a small child, so if he stays away from grains with gluten, he has good chances of living a normal life, she
explained. "Once he was on a gluten-free diet a couple months, his health shot back up," she said. For each child with symptoms, four children have celiac disease with no symptoms.
Once thought to be rare, research has revealed celiac disease is more common than many better-known maladies such as Alzheimer's disease, cystic fibrosis, Parkinson's disease and multiple sclerosis.
It has been widely recognized in Europe for a long time, and there is still more awareness on that continent, but American awareness is growing, according to Sandy.
Still, she stressed, it does not receive the recognition it should get.
Celiac disease has support groups in many places, including one based in Fargo, to which Sandy and Stacey belong. There are also 90 R.O.C.K. (Raising Our Celiac Kids) groups. Stacey is the coordinator of the North Dakota Chapter. She can be reached at 701-237-4854.
Gluten-free recipes and cookbooks are now more readily available, and prepared gluten-free foods and baked goods are becoming much more common as new companies emerge due to the number of people who are requesting gluten-free foods—even pizza. Gluten free beer is in the process of being developed. Some restaurants have gluten-free menus in larger cities. Many celiacs have their own restaurant cards, listing food products and ingredients they cannot eat. There are celiac kid camps and even gluten-free cruises.
So there is no reason to feel deprived. It is a very healthy diet.
Still, there are always sacrifices celiacs must make. Sandy, a Catholic, cannot take communion because of the wheat wafers. And she said she really misses homemade chicken soup and fluffy dumplings.
Celiacs (and parents of celiac children) usually take special food with them in case they encounter situations in which celiac-friendly food is not available.
Stacey needs to be sure to send gluten-free food to daycare for Austin. And when he starts school, it will be a whole new adventure into the gluten free lifestyle, she said.
Both Sandy and Stacey believe that having a local support group is essential to a celiac, to keep abreast of new research, products and moral support as right now the medical community does not offer the support needed by many celiacs.
Much information is found on a number of celiac websites, including
ndceliac30.org. Local info: 218-233-4898.
Either the website or the number can be used to register for the May walk.
The next regular meeting of the North Dakota Celiacs will start at 11 a.m. Saturday, April 5 in the Innovis Hospital innovations room, Fargo.
It will be a hands-on bread baking session, featuring Jan Hammer. A potluck is slated for 12 p.m. "Everyone is welcome, especially newcomers, said Sandy.
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