<<Disclaimer: Verify this information before applying it to your situation.>> Q & A ----- Q: Is there any connection between arthritis and CD? A: I don't know of any even though arthritis is sometimes the only presentation. Q: If a patient has positive blood tests but a normal biopsy, do they have CD? A: This may describe latent CD. Symptoms alone will not tell if CD is present. Testing must be done for a certain type of lymphocyte. Within 5 years a typical CD biopsy may develop. Q: Does a negative blood test always mean no CD? A: No. Family history and symptoms consistent with CD are also factors in determining if a biopsy is necessary. Q: If all tests for CD are negative but a patient has CD symptoms and a family history of CD, should they have a biopsy? A: Absolutely yes. Q: A patient was diagnosed 7 years ago and has been OK on the GF diet until about 3 months ago when bloating, diarrhea and other symptoms started appearing. Why? A: Several things are possible. First, it need not be CD. There are various other diseases that have similar symptoms such as spastic or irritable bowel which would require other treatment. There may be inadvertent gluten ingestion or the CD could have progressed to the refractory stage where it doesn't respond to treatment in which case a new biopsy would be required. Or lymphocytic colitis could be a possibility to consider. Q: How does one handle the diet in a hospital? A: You must be very emphatic. This is your health that is in danger. NOTE: Ron De Cicco, who spent time in the hospital for knee replacement surgery (see "Total Knee Replacement", The Sprue-nik Press, April 1997, pg. 3), stated that you should get the doctor to write it on the orders. Then it must be followed; you have your doctor's orders to point to if it isn't. Q: After a patient has been on the GF diet for a long time, what are the results of inadvertent intake of gluten? A: There is no answer. The longer one is on the GF diet, usually the better control of the diet one has. However, individual responses to inadvertent gluten intake are just that, individual. Q: A patient was recently diagnosed with CD but the follow-up biopsy showed no change. Why? A: It may take time for any improvement to show. The patient usually requires about 3 or 4 months to figure out the diet and then the body requires another several months to heal. The European practice is to re-biopsy in 3 to 6 months but I consider that too soon. It might be valid if the symptoms are very minor. Q: What about vitamin and mineral supplements? A: Take a standard "One-A-Day" type of vitamin. Vitamins are important, you have been deficient in them for a long time, and the one-a-day variety can't hurt. B12 deficiency, for example, can cause a nerve deficiency. The megavitamin regime- NO! But the regular one-a-day, yes. Q: If one has anemia, negative blood tests, but a flat small intestine biopsy, is there a possibility of mixed up test samples and is a second opinion necessary or does one have CD? A: Mixed-up blood test samples is not the problem here. If you see the disease in the biopsy, you have it. If you don't see it, you don't have it. A second opinion in this case is unnecessary. Q: After the initial diagnosis of CD and being placed on the GF diet, what follow-up should be done? A: Each year there should be a physical exam and blood tests. (This would be prudent even if the patient has no symptoms.) At the initial diagnosis a bone density test should be taken. Depending upon the age, sex (women should be tested more often) and symptoms of the patient, bone density tests should be taken probably every 5 to 15 years. After the first year there should be a follow-up biopsy. Q: Should blood tests be used with children for follow-up? A: Blood tests could be used for every patient. They are helpful for monitoring purposes. They can check for inadvertent gluten in children and/or adults. Q: Does CD cause headaches and migraines? A: The symptoms are listed but the connection is not known. If one is diagnosed with CD and the headaches still persist, look for another cause. Q: What about a partial GF diet? A: It is not good and is definitely NOT recommended. The lower limits of tolerable gluten intake are not known. If cancer develops, it is extremely difficult to treat. Q: What does one look for to diagnose CD in young children? A: The most common presentations in young children are diarrhea and/or a drop in the growth curve. Q: What does one look for to diagnose CD if there are no symptoms? A: Blood tests such as gliadin, endomysial, and tissue transglutaminase antibodies are the first clinical tests. If there is any suspicion from these tests or from other symptoms, then the biopsy should be done. Q: How does all this apply to dermatitis herpetiformis (DH)? A: DH is a very itchy skin condition usually found symmetrically on the body extensions, elbows, buttocks, etc. 90% of DH patients also have CD but many have no gastrointestinal symptoms. When DH patients are put on a GF diet, the majority respond. For DH patients it is recommended that they be tested for CD and usually they should have a biopsy too. NOTE: A member suggested that a change to 100% cotton sheets, no polyester, helped her skin irritation problems. Q: How is the absorption of medications, and in particular thyroid, affected by CD? A: Untreated or newly-diagnosed celiac patients can have problems with drugs. The absorptive capacity is severely restricted because drugs are processed into the body via enzymes on the tips of the villi. Q: Why isn't the medical profession more aware of CD? A: The history of CD is one of a slow learning process. It wasn't until after World War II that a connection was made between the disease and wheat. Then the gluten portion of wheat was found to be the problem for celiacs, and finally the gliadin portion in wheat gluten. In the last 5 years, the publication of information in journals has just exploded. Doctors are now checking for the disease earlier, they are recognizing that it doesn't have to be accompanied by diarrhea and weight loss. Each celiac can help the learning process by providing information to their own personal doctor. Q: Are there different standards for the GF diet? A: Yes. In the United States, we espouse a zero tolerance standard. In England, for example, they allow wheat starch. A celiac must read labels and be aware of the differences between countries when using imported products. Q: Is alcohol OK? A: There is no one answer. Alcohol is simply an OH radical at the end of a chemical name. If you are referring to alcoholic drinks, then wine, potato vodka, tequila, and rum would generally be acceptable. Wine coolers are generally not acceptable because malt is usually added to them. If you are referring to a pharmaceutical, you would need to talk to the company. If you are talking about distilled alcohol with a food chemist, then the answer would be that gluten can't transfer through the distillation process even though gliadin is the alcohol-soluble portion of the gluten molecule. [Editor's note: Distillation involves evaporating the liquid, capturing the vapor it forms, and then allowing the vapor to condense back into a liquid in another container. Any impurities in the liquid are left behind, unless these impurities evaporate as well. Gliadin is a protein, and proteins don't evaporate. Therefore, the process of distilling alcohol or vinegar should remove any gluten proteins from the liquid. In theory, the only way you could still have gliadin in distilled alcohol or vinegar is if there is some environmental cross contamination between the original gluten grains and the distilled end product.] Q: Is there any correlation between an allergic reaction to sulfites in wine and CD? A: No. Allergic reactions and celiac reactions are caused by two different mechanisms in the body. Q: What is the time lag between ingesting gluten and having a gluten reaction? A: It can vary anywhere from almost immediate to taking years. Everybody is different, but usually an individual will react within 24 hours. Q: Are oats, buckwheat, and millet OK? A: Oats are not recommended because of the high probability of cross-contamination in the products commercially available to celiacs. The one study done on oats was conducted for only one year and was done with specially-grown and handled pure oats-something not commercially available in the United States. Buckwheat and millet are not a problem themselves, but again, you may have trouble finding a source that does not have cross-contamination issues.