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What is Celiac Disease (CD) and Should I Test For It?

"Celiac disease (also known as Celiac Sprue or gluten-sensitive enteropathy) is a chronic disease in which malabsorption of nutrients is caused by a characteristic...lesion of the small intestine mucosa. The lesion is produced, through unclear mechanisms, by protein constituents of some cereal grains". (J.S. Trier, 1993) Traditionally, doctors have suspected CD only when patients show poor growth, extreme gastrointestinal problems and fatty stools. It is now known that many patients with a sensitivity to gluten serious enough to damage the gut wall show no such symptoms!

In patients with CD, the intestinal wall is excessively porous; not only are nutrients improperly absorbed, but large molecules which should be contained by the gut wall are not. This could be the way in which improperly digested peptides pass into the bloodstream and then cross the blood-brain barrier. Thus, the speculation that CD is present in some autistic children who would benefit from a gluten free diet is not inconsistent with the opioid excess theory of Reichelt and Shattock.

Various experts on autism seem to have long ago dismissed the idea that gluten could be a significant causal factor. However, gluten exists as a "hidden ingredient" in many foods, medicines and even in the envelope glue we lick. It is possible that autistic children put on a so-called gluten free diet were inadvertently ingesting gluten in minute amounts. For those with full blown Celiac Disease, tiny amounts can be toxic; it is not so far fetched to imagine that in less severe forms of gluten intolerance, minute amounts could also cause harm. When full blown CD is diagnosed, it can take more than a month on a gluten-free diet to see changes; again, it is not far fetched to assume that the same is true for people with gluten intolerance that have different outward symptoms. It may be then, that early researchers and parents who tried this intervention in the past simply gave it up too soon. Patients with full-blown CD often have terrible symptoms of gastrointestinal distress, fatigue, failure to grow or gain weight. Therefore, these symptoms are not ignored and the diet is changed when the child is relatively young. But it is possible that far less severe forms of CD exist and are, in fact, quite common. If so, these could go undiagnosed for years. Undiagnosed, the toxic effects of the ingested gluten could prove extremely damaging and could cause what is likely to be permanent damage to the central nervous system. According to Reichelt, there are fifteen opioid sequences in a single molecule of gluten!

According to an article by Dr. Allessio Fasano in a recent newsletter of the American Celiac Society:

In recent years there has been a noticeable change in the age of onset of symptoms and the clinical presentation of celiac disease. Because the typical symptoms of gastrointestinal dysfunction are frequently absent in older children, the diagnosis beyond the first two years of life is more difficult and often delayed. These cases are now regarded as having atypical or late onset forms of celiac disease.

Rimland and Meyer noted as long ago as 1967, that children with the highest scores on Rimland's E-2 Diagnostic Checklist also showed many gastrointestinal symptoms. It has also been suggested that CD is an auto-immune disorder with gluten stimulating increased synthesis of some antibodies in CD patients. Ruth Sullivan noted that "though few children with celiac disease have autism, it seems a disproportionate number of autistic children have celiac. Why? Does malabsorption of the small intestine prohibit vital substances (like serotonin...) from reaching the brain? If so, why do not all 'classic cases' have celiac? Or do they? (1975)"

A disorder very closely related to celiac disease, and necessitating the same dietary intervention, is a skin disease known as dermatitis herpetiformes (DH). According to the newsletter of the American Celiac Society, "Dermatitis herpetiformes is the skin manifestation of gluten sensitivity and 70-80% of DH patients have coexisting damage in the intestine." In many cases DH sufferers have no outward signs of intestinal difficulty, and yet at least 70% actually do suffer from CD! DH appears as a bumpy rash, usually on the arms, legs or buttocks. It is extremely itchy and may also burn.

My own son had such a rash on his arm and inner thigh. This rash first appeared at approximately age 2 (around the age his autistic symptoms also appeared) and was diagnosed by our pediatrician and two dermatologists as severe eczema. All prescribed cortisone creams but the rash did not improve. It was so itchy that my son would frequently scratch until he bled. We removed all synthetic fibers, dressing him in only 100% cotton washed in soap that had no colors or dyes. Nothing helped.

Then, as mysteriously as it appeared, the rash went away. Around the time that I changed my son's diet I began giving him evening primrose oil, which was said to help eczema. I credited the oil and bought several bottles. Then I stopped using it and the rash did not reappear. I now realize that the cause of the improvement was probably not the oil, but rather the removal of gluten from Sam's diet! Though I cannot have the tests run (because he is been off gluten too long) I am convinced that he was likely showing signs of DH, which were unrecognized by the doctors who saw it.

New blood tests show latent and sub-clinical cases of CD. Because even latent celiac disease will cause damage to the intestinal wall, it makes sense to have these tests run. The relevant tests involve screening the blood for celiac antibodies. The tests are called endomysial IgA, gliadin IgA and reticulin IgA. The blood test can rule out or suggest Celiac Disease. If CD is not ruled out it can only be confirmed via intestinal biopsy. If a gluten free diet has already been implemented, these tests will not be valid. While these tests will not reveal a possible sensitivity to casein, they should certainly be done on children who developed normally for up to two years (and who are thus more likely sensitive to gluten). Additionally, many autistic children toilet train late, which delays the possibility of collecting a 24 hour urine sample. Not all labs are equipped to run these tests. If a local lab cannot do it, you might want to contact Specialty Laboratories, Inc., in Santa Monica, CA at 310-828-6543

Although no child will willingly donate blood, all four tests can be performed following a single draw. While it is doubtful that all autistic people will turn out to have celiac disease, these tests should be performed to rule it out. Certainly CD causes a leaky gut; if various proteins are being improperly metabolized, such a gut would provide a pathway into the bloodstream for these peptides. Clearly these tests should be added to the battery that children undergo when a diagnosis of autism, PDDNOS or atypical autism is made.

Intestinal Permeability tests also exist, and should be performed, if possible [see section on the DAN! protocol, below.] This test requires a patient to ingest a sweet drink provided by the lab performing the test, then eat nothing for several hours. This is followed by a collection of all urine for the next 24 hours. This test must be ordered by a doctor, and will show whether or not the patient has a "leaky gut." If the child is not toilet trained, a bag (obtainable from your doctor) can be taped used to collect urine at each diaper change.

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