<<Disclaimer: Verify this information before applying it to your situation.>> ========================= Medical Information Much medical information is of no interest to celiacs, but articles are a simple way to explain an issue to a medical professional. These extracts are handy references to show your physician, in his technical language, what research has been documented throughout the world. When you encounter a similar problem or if you have a physician willing to learn from a patient, share these articles for the benefit of all concerned. 1. Flu Shots should be considered in October or November. Your physician can advise if the shot is appropriate for your medical condition. 2. The Management of the Well Patient with Stable Celiac Disease by Dr. Joseph A. Murray, University of Iowa. 1. Adherence to gluten free diet for life. The less frequent transgression the better. 2. Good nutrition emphasizing carbohydrates, calcium, adequate calories, and protein. 3. Micronutrients as part of the diet and probably a safe multivitamin with 100% of RDA of B-complex, iron, folate, and other vitamins and minerals. Avoid maxing out on any one vitamin. 4. Adhere to general cancer screening recommendations, monthly breast exams, mammograms and pap smears. Prostate check for men over 50 years. 5. Strategy for managing bone calcium (skim milk 32 oz. per day); vitamin D if deficient. Consideration for hormone replacement therapy post-menopausally. 6. Awareness of related illness, neuropathy, lupus, diabetes, thyroid disease (still low risk). 7. For DH patients the goal should be gluten free diet as the sole management with a decreasing need for dapsone or other drugs. 8. DH patients using these drugs need to have their blood tests monitored for side-effects. 9. Physical exam every year including stool hemoccult testing. 10. Blood tests: gliadin or endomysial antibody levels should fall and become negative on the gluten free diet. Follow-up tests of any that were abnormal should be done. Blood count and chemical panel are often done. 11. Cholesterol may rise after treatment. 12. Special strategies are needed for poorly responding cases. 13. Some advocate follow-up biopsies to normality and then every 5 years to assure continued healing. 3. How to Talk to Your Doctor, The Questions to Ask, by Dr. Janet R. Maurer, is an informative discussion of the patient-physician relationship. Through knowledge of this relationship, the patient can improve the process. Dr. Maurer's book is easy to read and explains the various subjects in medical terms. The major chapters are: common illness, medications, test procedures, the role of the specialist, hospitalization, and when to consider changing doctor. Sample questions in each chapter explain what to ask and how the physician may respond. The National Coalition for Cancer Survivorship publishes. This is similar to Dr. Maurer's book and is directed toward appropriate questions for cancer patients. Interviewing Your Physician is the subject of the by Dr. Wayne Sribnick. These techniques can be used in your search for finding a physician suited to your personal needs. 4. Laboratory Blood Test Values for Specialty Laboratories, Inc. antibody tests. These noninvasive blood tests are very useful in the diagnosis and follow-up of CD and DH in patients. A complete description of the tests is available in the November 1993 and January 1994 issues of The ActionLine. Positive results are only shown for those undiagnosed or when a celiac is off the GF diet. Results of tests and their reference range are: Test: Test: Test: EIA (Enzymatic Immuno- IFA (Immuno-Fluorescent IFA Assay) Antibody Assay) Results: Results: Results: less than 1:10 titer less than 10 EIA units less than 1:5 titer normal Negative normal greater than 1:10 titer 10-15 EIA units greater than 1:5 titer abnormal greater than 15 indeterminate abnormal EIA units positive 5. Absorption of Antibiotics or any medicine in adult celiacs is an item that can be overlooked. Celiacs report various responses to gluten These reactions can occur within hours, days or for some no symptoms may appear. If a biopsy were taken, it is likely that damage would be seen in all. The area of damage villi may also vary between celiacs. It is known that persons with damage to the first (proximal) part of their small intestine tend to absorb larger molecules and malabsorb smaller molecules, while the reverse is true in persons without damage to this section.'' (ii) 6. If medication is not giving the expected results; the status of the diet and absorption may be a factor to consider. An old screening test of normal subjects and celiacs with no indication of cardiovascular, liver, or kidney disease showed the following results for drugs excreted in the urine. an increased absorption of: cephalexin, clindamycin, fucidin, sulphamethoxazole, and trimethoprim an impaired absorption of: amoxycillin and pivampicillin a delayed absorption of: rifampicin normal absorption of: ampicillin, erthromycin, ethyl succinate, erythromycim sterate, and lincomycin. (iii) 7. Research Funding for celiac disease and dermatitis herpetiformis is minuscule. Without research, we can never expect a thorough understanding of the disease and the effect upon our body. Since CD is perceived as `foreign'* or a disease that is never seen outside of medical school by many doctors; there is limited expectation that the time from onset of symptoms to diagnosis can be reduced. Additionally, those without classical symptoms may remain undiagnosed for many years. Research grants are given to those problems that have a possibility of developing a commercial product or national visibility. A normal grant procedure is the submission of previous research in the planned area to show the direction that the proposed study will undertake. These facts and the membership of the review panels may effectively direct funds to other areas. During periods of tight budgetary restraints, new additional obstacles to overcome in their search for funding sources. The process is extremely difficult, but without personal contact between each celiac family and their Representative and Senator; celiac research funding may never increase. Small segments of the population find that it is impossible to raise a voice and be heard by elected officials. This is not always the case. Lyme disease affects 10,000 people and they presented their case to the Labor and Human Resource Committee and requested funding for research. The ActionLine proposes that each individual use every letter to elected officials or personal contacts as a vehicle for explaining our cause. We must request recognition and funding of celiac disease through research facilities of The National Institute of Health. Individual letters with your experiences may result in a response from Congress. Our horror stories can evoke a response. 8. As mentioned in the July issue and on the last page of this newsletter, Dr. Joseph Murray has established a foundation at the University of Iowa for celiac research and would effectively use any donations. * Foreign is used to denote publication of medical papers in foreign publications. Items not discussed in US magazines imply a negative applicability of the disease and doctors may perceive it as a condition not affecting their patients. 9. Reference Material is helpful when talking with your physician about secondary problems associated with CD. This is especially true of parents, who must overcome a perception of parental interference from physicians. One mother recently used Dr. Michael Marsh's book, , to inform a physician and change a diagnosis. 10. Celiacs with Diabetes should take into consideration the absorption difference between rice flour and other grains. Insulin requirements are affected by the carbohydrate consumed by the diabetic. Traditionally, carbohydrate equivalency lists have been derived from grains that are avoided by celiacs. ``The absorption of rice flour carbohydrate was close to 100 per cent as compared with an absorption of 80 to 90 per cent commonly consumed carbohydrates such as wheat, rye, oats, and barley. iv This difference may require diet or medication change to maintain the correct diet, exercise, and insulin balance. 11. E-Z-EM's Readi-CAT-2, Barium Sulfate, protein status is open to discussion. The company reports that the product contains no wheat, rye, oats, or barley in the vegetable gum or natural flavoring. The natural flavoring is orange flavor. The company is unable to report if this is pure oranges or an extract in a possible gluten solution. They recommend celiacs use item P-410, which does not contain any flavoring. Their phone number is (800) 544-4624.