BY JAMIE LOBER
Local celiac experts weigh-in on the misnomers, truths, tests, and treatments of this potentially life-threatening disease.
Georgia families are becoming more open to talking about celiac disease, a digestive disorder that affects both children and adults. “Celiac disease is an allergy to gluten which is in wheat and related products. It causes you to have to eliminate anything made from wheat from your diet,” summarizes Dr. Steven Wilson, family physician at Houston Medical Center in Warner Robins. Though you may not realize it, it is likely that you know somebody with this
condition. “It is very seriously underdiagnosed. A lot of people do not know they have it and think they have irritable bowel or chronic diarrhea,” says Wilson.
“No two people seem to have the same symptoms,” comments Carol Hinton, President of Gluten Intolerance Group. One or more of the following symptoms may indicate that you could have celiac disease:
• Chronic abdominal pain
• Unexplained weight loss or gain
• Vitamin K deficiency
• Bone or joint pain
• Missed menstrual periods
• Muscle aches
• Feeling lousy
There is a big misconception about celiac disease. “It is an autoimmune disease with a genetic component, so it is not a food allergy,” says Elaine Monarch, executive director at Celiac Disease Foundation.
If you suspect you may have celiac disease, you are not alone. “Some studies say that up to one in one hundred and fifty people in the United States have it,” educates Wilson. If you want to get tested, you must be on a wheat-containing diet in order to receive accurate results. Simple antibody blood tests include:
• Endomysial antibody
• Anti-gliadin antibody
• Total serum IgA
• Tissue transglutaminase antibody
If you are found to have celiac disease, it is advised that your child be tested too. “We run various panels looking to see if you have the positive antibodies. We can also check to see if they have certain genes. The earlier you catch this and the sooner you get on the proper diet, the fewer problems you will have,” says Wilson.
It is important to find a doctor who understands celiac disease. Many doctors don’t consider it the life-threatening disease that it is, nor how it should be treated in their patients. “It can be controlled, but there is no cure because it is a genetic disease. The only way to manage it is with a proper diet,” says Wilson. The celiac diet is not limiting. “We are only concerned with wheat, rye, and barley,” reinforces Monarch. Betty Crocker’s baked goods and General Mills’ cereals offer gluten-free options. Restaurants like Outback Steakhouse are also meeting the nutritional requirements of patients with celiac by providing a special gluten-free menu. It is all about lifestyle choices and restraints. “There is no pharmaceutical drug for celiac disease,” says Monarch.
Those with celiac disease need to be cautious when eating out. “A lot of restaurants have things that are breaded or floured and if it gets on something else, you can contaminate things,” notes Wilson. In fact, even many soy sauces contain gluten. While one must be careful when eating any processed food, gluten can be eliminated from the diet. You will find that when you are no longer eating gluten, your small intestine will begin to heal and your overall sense of wellbeing will improve.
There is support for celiac sufferers. In Central Georgia, there is the Gluten Intolerance Group, which is part of the Gluten Intolerance Group of North America. “We talk about how to make pizza, how we travel, how we read a label safely, what the health problems are, how we get more vitamins and the nutritional aspects, how to go out and eat safely and how to cook and adapt recipes,” shares Hinton. The group meets on the third Saturday of every month except for January and July at Central Baptist Church in Warner Robins.
Members have found the support to be helpful and learned to enjoy life with celiac disease. “I have done research and reading and now I travel, cruise, go to Disney and learn to pick which restaurants are safe. I very seldom have an exposure anymore,” shares Hinton.
There are consequences if celiac disease goes untreated. Avoidable complications include:
• Vitamin and mineral deficiencies
• Iron deficiency anemia
• Thyroid and other autoimmune diseases
• Early onset of osteoporosis or osteopenia
• Pancreatic insufficiency
• Neurological problems
• Gall bladder malfunction
The medical community is hopeful that there will be advances in celiac disease research in the near future. “There is a lot of genetic testing and research going on to see if there could be a reversal of the genes or if we could block the genes from ever doing anything. I am hoping we will have some breakthroughs in the next five to ten years,” says Wilson.