Celiac disease is a genetically inherited autoimmune disorder triggered by gluten, a protein in certain grains.  Celiac disease goes by many names, such as celiac sprue, non-tropical sprue, malabsorption syndrome, gluten intolerance, gluten sensitivity or gluten-sensitive enteropathy.  In celiac disease, when gluten-containing grains are eaten, the absorptive surface (villi) of the small intestine is damaged.  The villi, small hair-like projections that greatly expand the capacity of the intestinal surface to absorb nutrients, are flattened or broken off.  Because of this destruction of the villi, the body is unable to absorb the nutrients – protein, fat, carbohydrates, vitamins and minerals – which are necessary for good health.

There are separate proteins in each of the gluten-containing grains: gliadin in wheat (including all forms of wheat, such as triticale, spelt, durum and kamut), secalin in rye, hordein in barley (including malt and malt flavoring), protein in oats and avenin, which is still under scrutiny and testing in regards to gluten content.  It is controversial in the celiac community as being safe for celiacs, therefore, we cannot advocate the consumption of oats at this time. 

The symptoms of celiac disease are many and varied.  The most common symptoms include chronic diarrhea or constipation, pale and bulky stools, abdominal cramping, intestinal gas (flatulence), distention and bloating, anemia, fatigue, osteoporosis, weakness, lack of energy, weight loss, depression, irritability in adults and short stature, slow growth, stomach pain, vomiting and behavior changes in children.  Many adults receive a diagnosis of irritable bowel syndrome and it may take years to finally come to the correct diagnosis of celiac disease.  A significant percentage of people with celiac disease exhibit no symptoms at all; these individuals are considered to have “silent celiac disease” and often are relatives of patients positively diagnosed.  Screening of first and second degree relatives is highly recommended.

Initial screening for celiac disease is by antibody blood tests.  These blood tests should include:  antiendomysial antibody (EMA), anti-tissue transglutaminase (tTG) and the determination of total serum IgA level.  Positive blood test results call for the most definitive test we currently have, the small bowel biopsy.  A small tube, an endoscope, is passed down the throat, through the stomach and into the small intestine (duodenum and jejunum) where 12 to 15 smal tissue samples (biopsies) should be taken.  If partial or total villous atrophy is found, the patient is placed on a gluten-free diet.  If improvement of the patient’s health results, a diagnosis of celiac disease is confirmed.

The gluten-free diet is the only treatment we have for celiac disease.  This means that the diet for patients with celiac disease must be strict, involving complete, lifelong avoidance of all products containing gluten.  Celiac disease may strike at any age, from babies who have just been introduced to foods containing gluten to the elderly.  But once diagnosed, it is for life.  Children cannot outgrow celiac disease.  The saying “Once a celiac, always a celiac” is all too true.

Upon diagnosis, people with celiac disease are often intolerant of milk.  This lactose intolerance results from inflammation in the brush border of the surface of the small intestine, which can create a deficiency in the lactase which digests the milk.  Fortunately, with healing of the intestinal surface, the lactose intolerance usually goes away.  But it may be wise to avoid milk for a time when going on the gluten-free diet.

During this period of healing, patients may require vitamin and mineral supplementation as well, as determined by their doctor.  It is also a good idea to get a bone density evaluation to check for possible bone loss due to calcium malabsorption.  Some doctors advise testing right after diagnosis to see if you have suffered bone loss and to determine whether you might possibly need immediate treatment.  Other doctors prefer to delay scheduling this test for a year or two, to first allow maximum beneficial effect to your bones from the gluten-free diet.  Children, in particular, have shown an ability to recover from the effects of calcium deficiency and resume normal growth.  Discuss the timing of your bone density test with your doctor to determine whether you should have one now or whether it should be scheduled after you have been on the gluten-free diet for a while.

The gluten-free diet is not simple.  Gluten is hidden in many food products.  Simply looking for wheat, rye, barley or oats among the ingredients listed on food labels will not be sufficient.  Many innocent sounding ingredients may contain gluten.  For example, hydrolyzed vegetable protein (HVP), textured vegetable protein (TVP) or modified food starch may contain gluten.  We call these ingredients “questionable”, meaning that we should question the manufacturer to determine exactly what they are.  The manufacturers use these terms so that they can switch ingredients to the lowest cost provider without the expense of changing the ingredient listing.  This means that we must be alert and check frequently with manufacturers on the gluten-free status of their products.  So, as you can see, the gluten-free diet is a lot more than just eliminating familiar bread, pasta, cookies, cereal and breaded fried foods.   Fortunately, the celiac community, including our support group, can help you learn how to go gluten-free and stay gluten-free.