Going Gluten-free: The Realities Of Celiac Disease

David Mittleman
Attorney
(866) 735-1102 Ext 430
Posted by David MittlemanOctober 16, 2008 9:00 AM

Celiac Disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. The disease can be confused with irritable bowel syndrome, iron deficiency anemia, inflammatory bowel syndrome, diverticulitis, intestinal infections, and chronic fatigue syndrome. While the disease affects one in every 133 Americans, 97% of those who have the disease remain undiagnosed. The risks associated with the disease are malnutrition, anemia, osteoporosis, thyroid disease, type-1 diabetes, infertility and cancer. While there is no cure "per se", one with celiac disease may avoid these complications by adopting a gluten-free diet. Gluten, found in many different kinds of foods including, but not limited to, breads, cereals, pastas, beers, seasonings, and food additives, attack the villi lining the small intestine. This causes nutrients to not absorb into the body and can cause severe long term problems.

My law clerk was just diagnosed with the disease just two weeks ago. After complaining to her doctors for 5 years about extreme abdominal pain, she was finally tested for the disease. Two weeks after adopting a gluten-free diet, she feels amazingly better. Mimi Winsberg, a triathalete and marathon runner realized she had the disease when her health and her athletic performance spiraled downward. Little did she know, the power bars and pasta she had been ingesting for energy caused her great fatigue. Similarly, Dave Hahn, who had reached the summit of Mount Everest 10 times, realized that he had the disease when he became inexplicably weak during his second hike up to the summit. Diagnosing the disease and changing your diet are key to successfully fighting this disease.

The problem that has lead to many underdiagnoses is that many doctors believe that celiac disease is extremely rare. My law clerk saw four different doctors, two of them being gastroenterologists, before her primary care physician decided to run the necessary blood test and diagnosed her with the disease. Dr. Peter H. R. Green, a professor at the College of Physicians and Surgeons at Columbia and the director of the university’s celiac disease center, believes that it is the "lack of pharmaceutical backing for the disease" that is the root of the problem. Because treatment involves a dietary change and not a traditional medicinal one, the lack of research, medical education and public awareness leads to under and mis-diagnoses. Alba Therapeutics and Alvine Pharmaceuticals, Inc. are working towards finding drugs to inhibit the destructive autoimmune response to gluten. Additionally, dietary supplement manufacturers are working to find enzyme formulations that will assist people in digesting gluten, similar to those used for lactose-intolerance.

Until celiac disease becomes more well-known, patients must pay close attention to their symptoms and push their doctors for appropriate testing. Symptoms to which attention should be paid are: abdominal cramping/bloating, abdominal distension, acidosis, anemia, appetite (to the point of increased craving), back pain, constipation, decreased ability to clot blood, dehydration, reduced fat padding, gas, gluten ataxia, mouth sores or cracks in the corners, muscle cramping, night blindness, very dry skin, change in stools, tooth enamel defects, weakness and weight loss. Also pay attention to depression, disinterest in normal activities, irritability, mood changes and inability to concentrate. If you are suffering from any of these symptoms, seek treatment immediately. The long-term effects and consequences are too risky to ignore.

2 Comments

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Albert Vala
Posted by Albert Vala
October 16, 2008 10:36 AM

Good article! However it missing the reason why is gluten so deadly. It is hormone Zonulin
Zonulin works like the traffic conductor or the gatekeeper of our
body?s tissues,? says lead author Alessio Fasano, M.D., professor of
pediatrics and physiology at the University of Maryland School of
Medicine, and director of Pediatric Gastroenterology and Nutrition at
the University of Maryland Hospital for Children. ?Our largest gateway
is the intestine with its billions of cells. Zonulin opens the spaces
between cells allowing some substances to pass through while keeping
harmful bacteria and toxins out,? explains Dr. Fasano.
I believe that zonulin plays a critical role in the modulation of our
immune system. For some reason, the zonulin levels go out of whack, and
that leads to autoimmune disease,? explains Fasano.

Sue in MD
Posted by Sue in MD
October 17, 2008 8:27 AM

Excellent article. Another often misleading symptom of celiac is obesity. In some folks who are not absorbing essential fatty acids, the food cravings are so severe that they become very obese. These folks are still malnourished and anemic. Many celiacs go through stages with pain, without pain, from constipation to many movements per day of bulky stools, thin to weight gain and back to the final weakened stage when the hair begins to fall out, muscle deteriorates, the mind becomes confused and memory is affected because of B-12 deficiency. In addition to a gluten free diet, celiacs need supplemental vitamins to help them during the healing process. I have found sublingual (under the tongue) B-12 and Omega 3 (at least 2000 mg.) to be especially helpful. High doses of Vit. D have also been prescribed because of inability to absorb that nutrient. A high-potency Multi-Vitamin with minerals is also a good idea. A person with suspected celiac should not quit eating gluten until they are blood tested and receive an endoscopy. It is impossible to diagnose once you are gluten free because the body stops making antibodies. Another aspect of the "gluten syndrome" - some folks do not have celiac, but are still "gluten intolerant". If you test negative, going gluten free on your own for a period of a few weeks will give you an indication of whether being gluten free will alliviate your symptoms. Then you might challenge yourself by eating gluten and see if the symptoms return. Finally, some folks are Iga deficient. These folks may have celiac, but they do not have the antibodies and will test negative. If you strongly believe celiac is your problem, insist on an Iga test to see if you are producing antibodies. If Iga deficiency is a problem, demand an endoscopy to check your intestinal villi. Also, go online to one of the many celiac websites and request a "celiac friendly" doctor in your area. There are some excellent online support groups on Delphi, and at CELIAC@LISTSERV.ICORS.ORG. Best of luck to all who endeavor to be diagnosed.

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