Celiac disease – I know of no disease more rare that is a fixation for more people. Practically everything I see in the processed food area advertises itself as being gluten free, yet celiac disease affects about only one in 100 people.  Even the dogs that I see on my walk are claimed by their owner to be on a gluten restricted diet.

Celiac disease-it’s hard to imagine a more complicated and variable disease. Although Coeliac Disease runs in families with HLA-DQ2 and HLA-DQ8, having these markers is not alone sufficient to cause Coeliac Disease. Eating gluten is not even sufficient, but requires an enzymatic change via tTG2 to make gluten fire up the immune system. Testing  for an antibody to tTG2 is one of the better tests for celiac disease, and a drug that blocks tTG2 has recently proven helpful as a treatment for celiac disease.

CD often starts in young children, but the disease can begin at any age. Although gastrointestinal symptoms such as diarrhea or constipation, bloating, and bulky, oily stools are typical, even clear-cut cases may have no recognized symptoms at all. In other cases almost any organ can be involved, or the symptoms can be non-specific such as Weight loss, anemia and fatigue.

it is estimated that only about 10% of people with celiac disease are ever proven to have the diagnosis. It Is massively under diagnosed in spite of permeating the popular lore.

A lot of people place themselves on a gluten-free diet and  claim to feel better, but being on a gluten-free diet makes the diagnosis difficult to make; if celiac disease is seriously suspected, the doctor will place the patient on a gluten-containing diet which allows the tests, such as  anti-t-TG2, or villous atrophy of the small bowel to become positive.

Among people who actually have real, valid, proven celiac disease, who have every reason to want to restrict gluten to improve their Disease, 40% of them have great difficulty in adhering to the necessarily draconian gluten free diet.

Even the doctors can have a blind eye to celiac disease, since it is quite rare. A good friend of mine with chronic bloating went to a gastroenterologist who declared her free of disease, without having ruled out celiac disease. One would think that a gastroenterologist  would be tuned in to coeliac disease, given the prominence of gastrointestinal symptoms and pathology.

The patient should be her own advocate.

—Dr. C

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