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Melissa's Story

 
11/17/2008

Melissa's Story

What do a 32 year-old with heartburn, a 21 year-old with no energy and “out of the blue” low blood sugars, an 11 year-with recurrent bone fractures and a 10 year-old with no symptoms at all have in common, aside from having type 1 diabetes? They all have Celiac Disease: an incurable, but treatable, autoimmune condition that is now being called one of the most misunderstood and under-diagnosed diseases in America today.

Once thought to be so rare that only 1 in 4000 Americans was diagnosed, celiac has now been shown to affect 1 in 133 Americans, and more significantly for the diabetes community, it may be present in 10% or more of those with type-1 diabetes. Left untreated, celiac can cause erratic blood sugars, infertility, miscarriages, dental problems, attention-deficit disorder, osteoporosis, lymphoma, neuropathy and other autoimmune diseases.

Celiac disease is caused by an inability to digest certain grains due to a deficiency of a particular enzyme. It is triggered by consumption of wheat, rye, barley, and in some cases, oats. In someone predisposed to develop celiac, eating “gluten” (the protein substance that gives baked goods their “chewy” feel) triggers an immune reaction that damages the lining of the small intestine where nutrients are normally absorbed.

Classically, celiac disease was thought to occur only in patients of short stature with chronic diarrhea. Now we know that more than 60% pf patients with celiac disease have neither of these symptoms. Potential warning signs include constipation, rapid weight loss or gain, psychological complaints, skin disorders, anemia, abnormally low cholesterol, unpredictable blood sugar swings, or no symptoms at all.

Many endocrinologists routinely screen their patients with diabetes for celiac disease every couple of years, even if the initial results were negative. A simple blood test that measures an antibody (tTG) can be used to detect celiac disease. If the blood test indicates the likelihood of celiac, the next step is an intestinal biopsy done under light sedation, and read by an experienced pathologist. Since 10% of first-degree relatives of those with celiac may also have the disease, a positive biopsy result should warrant having all family members screened.

So that’s the bad news. The GOOD NEWS is that, unlike diabetes, this disease requires no injections, no blood checks and no mind-numbing record-keeping… just a set of dietary changes. Removing the offending gluten from the diet heals the body almost miraculously. Within a matter of days, many people report an improvement in their general well-being. Within 3-6 months, blood tests may show a return to normal antibody levels and subsequent biopsies usually show a completely healed small intestine. The risks of other medical conditions also return to normal levels.

Sounds easy? Not exactly! Gluten must be eliminated 100%, since even a trace amount can trigger intestinal inflammation and prevent the healing. Gluten is not only found in the obvious places: pizza, beer, bagels, pretzels, pasta, baked goods, and cereal, but also in less expected foods such as soy sauce, licorice, sauces, and soups. Fortunately, there are wonderful on-line forums and a widely expanding market of gluten-free products and suppliers.

You might be wondering why, if few or no symptoms are present, it is important to know if you have celiac disease. Remember the 21 year-old mentioned in the first paragraph? That was my daughter, diagnosed with diabetes at age 9. I requested the celiac test for her last year, only because I heard of other children with diabetes testing positive. I had no idea that the depression, irritability, rising A1c, anemia, fatigue, and stomach aches that plagued her for years weren’t just blood sugar-related. Even our doctor was skeptical about running the tests. Lo and behold, the blood tests came back positive. An intestinal biopsy confirmed the diagnosis.

Today she is following a gluten free diet: NOT an easy task for a college junior in New York City. But her improved A1C, the absence of stomach aches, irritability, and fatigue are rewarding compensation for the rigors of this new lifestyle. Life is still a banquet, but today’s banquet features rice, potatoes, fruits, vegetables, meats, salads, and gluten-free substitutes instead of grabbing a bagel, donut, slice of pizza, wrap or soft pretzel on the way to class.

As the medical community awakens to the risks associated with celiac disease, I believe that greater awareness will make living gluten-free easier (and healthier) for all affected by this “silent” disease.

Does this story sound similar to your or a family members? You might have celiac disease, find out now, take our celiac disease symptoms checklist.

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