Many more people – especially in the United States where we are exposed almost constantly daily to gluten by bagels, bread, cake, cookies, etc. – actually have celiac disease (CD) and/or are rapidly on their way to much more serious chronic diseases such as osteoporosis but are still totally unaware of this contributor to their bad health and symptoms.

A gluten free diet (GFD) is the solution, especially for people with gluten sensitivity. Most people with CD show substantial improvement within the first few weeks of starting a GFD, but 7 to 30 percent of people still have CD symptoms persisting. These symptoms can persist for a couple of reasons:

• They probably have sensitivities to other foods besides gluten which they are still consuming
• Gluten is so widespread in our society that even a supposedly GFD does not remove all of it.
• For many people they have to remain on a GFD for a number of years.
• A study of thirty adults showed that they had healed their intestines after eight to twelve years on a GFD.

Eighty percent of people not on the GDF develop a low spine BMD (Z score -2 +/- .04), but only forty percent of people on the GFD had low spine BMD (-1.6 +/-.02). The prevalence of osteoporosis with CD is consistent enough to justify screening of all patients with osteoporosis for CD with blood tests.

However, the gluten free diet (GFD) does cause some problems. Some 50 percent of adults treaded for celiac disease (CD) for several years get vitamin deficiencies. The most common are iron, folate, calcium, and fat-soluble vitamins. These people need temporary or long-term vitamin and mineral supplements. If bone disease is present or lactose intolerance persists, calcium and vitamin D supplements are needed. Another problem found in a test of over 30 adults on a long term GFD was CD maintained by fasting plasma. 

Cow’s milk (instead of human milk) is still used extensively by the huge dairy industry in our society. In about 50 percent of patients with CD, when they were given cow’s milk their intestines inflamed just like when they took gluten. This sensitivity to cow’s milk is one of the many reasons people following a GFD do not recover from the CD symptoms. In addition, celiac toxic proteins patterns were discovered in many other foods.

People without gluten sensitivity have many problems. These include villous (the many hair-like projections absorbing nutrients, especially in the small intestines) flattening of intestines and lymphocytes. Other problems include food allergies, autoimmune diseases, AIDS, and irritable bowel syndrome. In a study of 15 children (mean age 15) with cow’s milk allergy diagnosed and treated in infancy, currently on a normal diet, were referred to our department due to abdominal pain. The control group of eight children had no evidence of any allergy. Seven of the 15 children had focal villous atrophy in the descending part of their duodenum. The conclusion is that this villous atrophy is a good sign of food hypersensitivity from infancy.

Gluten has many sources. A 30mg. fragment of wafer contains 0.5 mg. of gliaden (1 mg of gluten). Management of non-responsive CD should begin with a very detailed dietary assessment to detect any source of gluten. Some people have inadvertently ingested gluten from corn or rice cereals with barley flavoring. Gluten can also be inadvertently consumed from tablets with wheat starch as filler of from antacids with a wheat flour base. Gluten can be inhaled as well as ingested.

Unchecked CD can lead to life threatening unmanageable complications such as intestinal lymphoma. Most studies have found the risks of malignancy or mortality at least twice as great. Significant mortality was seen in patients who did not adhere to a GFD recorded from clinical records and an interview. Non-adherence to a GFD – eating gluten once a month – increased the chance of death by 600%. These results emphasize the need for prompt diagnosis and treatment even for a very minor and symptom less form of CD. This reaffirms the need for skilled nutritional counseling in the treatment of CD.

In most cases, non recorded CD is due to inadequate education about being strict, hidden sources of gluten in commercial and restaurant foods, outdated product information, cross contamination, or the complexity of the diet. If one wishes to avoid gluten in processed foods, the advice of a professional dietician is required.

Social phobia – the fear of interacting with and being scrutinized by other people, and therefore spending all your time at home or isolated – results in a much higher likelihood of getting CD. People with CD and social phobia were 70% versus 16% in healthy controls. All these factors can lead to depression.

Even minute traces of gluten can trigger heightened immunological activity in gluten sensitive people. This emphasizes the need for clinicians to adequately educate people about the disease. Psychiatric therapy can also help at the time of diagnosis to help the patient start and adhere to a successful GFD. CD and a GFD are both lifelong and this should be explained to the patient. Patients often react with grief and cannot understand that something as fundamental as their diet is hurting them. But, with a successful GFD that they adhere to, life can still be very enjoyable.

Article by Andrew Fisher.

Thomas O'Brian, CCN, DACBN,  presented a lecture with Sueson Vess, to the American Nutrition Association in Fall, 2009.  This lecture is available for sale on DVD.  Email the ANA to order a copy.