<<Disclaimer: Verify this information before applying it to your situation.>> A Review of Celiac Disease ------------4------------- by Thomas Alexander, MD summarized by Tom & Carolyn Sullivan At the October 9, 2000 general meeting TCCSSG Physician Advisor Dr. Thomas Alexander provided a layman's version of the presentation he makes to Beaumont Hospital doctors during the year as part of the in-house continuing education program. Highlights of the talk follow: Dr. Alexander noted that the modern view and knowledge of Celiac Disease (CD) is only about 50 years old. And although there has been more learned in the last 10 years than in the first 40, there are still many unknowns. CD is a chronic disorder. It occurs in about 1:250 Caucasians. And the female to male ratio is about 2:1. There are probably at least two genes involved in CD. Answers are still being sought as to why in identical twins, if one has CD only about 75% of the time does the other also have CD. Also, among the HLA-identical siblings of celiacs only about 30% will also have CD. (It is thought that other, non-HLA genes may also be involved, and perhaps one may have a protective effect; but this is only speculation at this time.) With earlier diagnosis of CD occurring today, there are fewer classic presentations. And because the blood tests and biopsy are very specific, a second gluten challenge is not usually required any more. The latest blood test, tTg (Tissue Transglutaminase), is considered the most accurate and has both a sensitivity and a specificity of 95% or greater. However, this still means that 1 in 20 tests is wrong with either a false positive or a false negative. The macroscopic (visible to the naked eye, or during endoscopy) findings of CD are seen in approximately 88% of patients with active CD, while the microscopic (biopsy) findings are seen in all patients with active CD. There is no consensus as to the meaning of the term "latent CD". It generally includes those who have positive blood tests and normal biopsies, but also with an increase in certain T-cells found when studying specially-stained biopsy slides. About 25% of this group will be diagnosed with CD within five years. The treatment for CD is the gluten-free (GF) diet. In addition, Dr. Alexander now recommends that celiacs take a daily multiple vitamin with minerals. Besides the fact that it generally won't be harmful, it can serve to protect against many of the vitamin deficiencies that are reported as being linked to CD.. The diagnosis of "classic" CD is easy. But the frequency in which classic symptoms are found decreases as the suspicion of CD increases. (In other words, the more you look for CD, the more likely you are to find it in people with the less obvious, non-classic symptoms.) Some of the more common non-classic presentations are iron deficiency, osteoporosis (6% have CD), and (in children) growth retardation. The gluten-free (GF) diet, requires support, and the best help is a support group. The post diagnosis medical involvement is generally not much. Annually it would include basic blood work plus iron, folic acid, and B12 levels. It could include an antigliadin or other antibody test to verify dietary compliance. A baseline DEXA test for bone density is advisable. A 24-hour urine test for calcium may be indicated. And at one year a second biopsy may be helpful to get a new baseline, as not all patients will heal completely. (A second biopsy should not be taken any earlier than one year because it takes at least four months to get the diet down pat and another four to six months for healing of the intestines to reach a steady point.) Dermatitis Herpetiformis (DH) is an extremely itchy skin rash that is relatively rare and usually appears in the teens or early twenties. In 85-90% of DH patients, CD is also present. The genes involved in DH and CD are similar and both diseases have the same associated diseases. Dapsone is generally prescribed to help control outbreaks of the rash associated with DH. However, it does nothing for the CD. Most DH patients respond to the GF diet, so they can reduce or even eliminate the use of Dapsone and have fewer flare ups. Dr. Alexander answered a few questions from the floor: Q: Is it true as one internet site stated that one should not take folic acid with pernicious anemia because it reduces B12? A: As usual, one must be careful of internet information even from reputable sites. In this case, unless the patient already has a high level of folic acid in the body, there is no problem with taking folic acid. Q: Is wheat starch safe? A: Wheat starch should be avoided because commercial sources cannot be guaranteed to be washed clean of gliadin. Oats should also be avoided because commercial sources cannot be guaranteed to be free of cross contamination. Q: Should all celiacs get a biopsy after one year on the GF diet? A: I still do it because it is helpful to know what the status of the intestinal CD was when the patient was feeling "well". Should the patient later deteriorate, biopsies are often taken. In the absence of post-treatment "well" biopsies for comparison, these later biopsies become less meaningful. Many are getting away from the post-treatment biopsy and are instead relying on the blood antibody tests to follow their patients' progress. However, the cumulative cost of doing so is not inexpensive, and the rises and falls in the antibody levels are less reliable and less predictive on an individual basis. Q: If my hands itch, do I have DH? A: If one does NOT have a rash, it is NOT DH. It could be dryness or a reaction to an organic or chemical product. Q: What symptoms would be seen in an infant with CD? A: There would be no symptoms until after the offending grains were introduced into the child's diet. After introduction, the symptoms could include diarrhea, colic, weight loss, behavioral changes and growth retardation. Q: Should someone with myasthenia gravis or multiple sclerosis be put on a GF diet. A: If the disease is Type 1 Diabetes, the answer might be "yes", because there is a high correlation between the Type 1 Diabetes and CD. However, there is only a weak correlation with multiple sclerosis and none with myasthenia gravis so I would recommend staying on a gluten-containing diet until a diagnosis of CD is made. A family with many autoimmune diseases should always think of CD but no one should go on a GF diet until after a biopsy-proven diagnosis, because after you go on the GF diet it becomes extremely difficult to later make a diagnosis of CD. Q: What are the symptoms of esophageal cancer? A: The primary symptom of esophageal cancer is the sensation of food sticking in the esophagus after it is swallowed. Unfortunately, the cancer is usually more advanced by the time this symptom occurs. It has been suggested that certain types of esophageal cancer occur with greater frequency in CD, though I've not seen such a case myself in 16 years. Q: What is the prevalence of constipation with CD? A: About 25% of all CD patients have constipation and it does not necessarily go away with the GF diet.