Celiac Disease and Going “Gluten Free”

glutenfreefoodIf you’ve been to the supermarket lately, you’ve probably noticed that many food manufacturers are jumping on the “Gluten-Free” bandwagon. It seems that a diet without gluten, the protein found in wheat, rye and barley, has replaced Macrobiotic or Vegan as the “regimen du jour.”

Is this a fad, or is it real? A little of both, I fear. Vegetarian, Organic, Free Range and Vegan lifestyles are on the rise as people seek ways to express their values or gain control over their lives in an otherwise chaotic world. Although avoidance of wheat products might fall into that category, and some people may find that they have some sensitivity to wheat products, a true and serious need for gluten-free food is quite another story because, for someone with Celiac Disease, a single crumb can make the difference between a normal day and one spent doubled over in pain.

In a person with Celiac Disease, the presence of gluten triggers changes in the intestinal lining, then stimulates the immune system in a way that eventually damages the small intestines so that they fail to absorb vital nutrients. The results? Digestive pain, cramping, diarrhea, weight loss, bloating, anemia, lack of energy, mouth sores, fatigue, reduced bone mineral density and increased risk of bone fractures. Children are often diagnosed when they fail to grow properly. Celiac Crisis is the most extreme form of Celiac Disease complication and can involve such severe symptoms of diarrhea and dehydration that hospitalization is sometimes required.

Celiac’s 1%

Once thought to be extremely rate, Celiac Disease is now believed to affect about 1% of the US population, or 3 million people.  Researchers estimate that only 20% of people with Celiac Disease are diagnosed.  That means that upwards of two million people with Celiac Disease have not been diagnosed, yet may be suffering the results of the disease even if symptoms are not that severe.  Celiac Disease affects women twice as often as men, and it also runs in families and occurs more frequently in patients with other autoimmune diseases like Type 1 diabetes and Hashimotos Thyroid Disease.


Celiac Disease can be difficult to diagnose sometimes. The December 20, 2012 issue of the New England Journal of Medicine highlighted Celiac Disease in its Clinical Practice Case Study, one in which a 22-year-old woman presented to the ER with a fractured wrist from playing volleyball.  Her only other complaints are of fatigue and mouth sores.  An x-ray of her wrist showed low bone density.  Her blood tests showed low levels of hematocrit, iron and vitamin D. Celiac Disease was suspected even though she had no gastro-intestinal symptoms. The specific serum antibody response of Celiac Disease can be measured with a specific blood test measuring antibody levels (IgA  and IgG anti TG antibodies, IgA antiendomysial, IgG DGP, and HLA-DQ2 or HLA-DQ*), and then a biopsy of the small intestine is required to confirm the diagnosis.

The natural history of Celiac Disease varies widely and can’t be completely attributed to a genetic predisposition.  And even more perplexing, in some patients loss of gluten tolerance can be reversed.  A Finnish Study showed that almost 50% of children diagnosed with Celiac disease had blood tests which revealed a complete reversal of the condition despite continued gluten exposure.  Their bodies were able to “outgrow” or correct the situation.

Because we understand the cause of the disease, treatment is simply adherence to a gluten-free diet.


Treatment for Celiac Disease requires a completely gluten-free diet, with no wheat, rye or barley proteins. Even the lowest amount of gluten can cause damage to the intestine.  Even a crumb can matter.

The good news is that gluten is a protein with limited nutritional value, so it can be replaced with other dietary proteins.  However, many nutrients often consumed along with gluten, like fiber, iron, calcium and folate, must be replaced elsewhere in the diet.

In most patients healing of the intestinal lining begins within 6-24 months after initiation of the diet.

Adolescents and children find that adherence to the gluten-free diet is difficult, and they report concerns related to relationships and management of daily life.


Patients should be followed by a physician for life to review adherence to the diet.  Blood tests can monitor antibody levels associated conditions such as anemia, low bone density and other autoimmune diseases.

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