Going Gluten-free: The Realities of Celiac Disease

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,(1) 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 [free of a protein contained in wheat, rye, barley, and for some, oats].

Gluten, found in many different kinds of foods including, but not limited to, breads, cereals, pastas, beers, seasonings, and food additives, attacks 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 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 triathlete 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 led to many under-diagnoses 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(2) 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 toward 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 [lack of coordination],
• 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.(3) The long-term effects and consequences are too risky to ignore.

* * * *

1. “A recent large, multicenter study investigating the prevalence of celiac disease, the first of its scale in the United States, revealed biopsy-proven prevalence rates of 1 in 133 asymptomatic subjects without known family histories of the disease,” according to the Columbia University Celiac Disease Center website. See “Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: A large multicenter study.”

2. Diagnosis of Celiac disease starts with a blood test for certain antibodies; and may include endoscopy to observe the lining of the duodenum (the first part of the small intestine that connects to the stomach); or the traditional “gold standard” – a biopsy of the duodenum to test for changes in the villi (fingerlike projections that absorb nutrients and may become inflamed or “blunted” with Celiac disease), plus positive clinical response to a gluten-free diet. Last week a Canadian firm launched a home blood testing kit for Celiac-associated antibodies that provides a result in less than 10 minutes.

3. Many Celiac information and support websites may help you to find a “celiac friendly” doctor in your area. Just one example is ClanThompson.com.
* David Mittleman is a registered pharmacist and practicing personal injury attorney with an interest in healthcare quality & safety news. This article is reproduced with kind permission from his website InjuryBoard.com.

Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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