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Questions and answers on coeliac disease

Joseph Murray, MD, PhD, answers questions on coeliac disease ( summarised by
Jim Lyles for the Sprue-nik Press, November 1996.

Dr Joseph Murray, one of the leading USA physicians in the diagnosis
of celiac disease (CD) and dermatitis herpetiformis (DH),  originally
came from Ireland and got his medical degree and a doctorate from the
National University of Ireland in Galway.  His residency was at the
University of Dublin and he completed his fellowship in gastroenterology
at the University of Iowa College of Medicine, where he has been since

Dr Murray started off the questions and answer session with a warning: All the information from his talk and from the question and answer session is "general" information. It is NOT specific information for you to go home and act on. Every celiac is unique, with unique problems. Anything that requires medical intervention needs to be discussed with your personal physician. Nutrition questions should be discussed with your dietitian. It is important that people do NOT go off and self-medicate, self-treat, or self-diagnose. It may seem simpler and cheaper to do without an official diagnosis. You may think, "Why should I go see my doctor, when I'm feeling good?" The answer is that it is important for your doctor to see you when you're feeling good, because a year from now you may not be feeling good. Q: What is the latest on the oats question? A: A lot of time was devoted to the oats question at the Tampere conference. As you know, there was a Finnish study published in the New England Journal of Medicine doing a six-month follow-up on patients with CD that had been eating oats. The study compared their intestinal biopsies after six months with CD patients on a regular GF diet. Note that in this case GF has a different meaning, because they allow wheat starch as part of the GF diet there, which is generally not recommended in this country. The same percentage in both groups still had intestinal damage, and the two groups had similar symptoms. There have also been a couple of other studies in Sweden and Denmark, confirming these findings. However, we need to consider a couple of things. In the study they used a batch of oats that was specifically grown for the study. These oats were examined in the field and it was verified that there were no contaminating grains such as barley or wheat also growing there. These oats were then specially milled and specially stored for the study. Finally, these oats were tested using the most sensitive methods available for any wheat contamination. There were several presentations at the conference about testing commercial sources of oats in different European countries. About 10% of commercial oats and wheat-free oat-containing foods were found to have significant traces of wheat gluten in them. These tests have not been done in the USA, so we don't know how pure the oats would be in our country. Some of the largest cereal plants in the world are in Cedar Rapids, my home. I know people who work there and there is a lot of cross-contamination in that large setting of wet-milling and dry-milling of oats and other grains. So it is probably not safe for celiacs to consume oats that are commercially available in the USA. Oats, rye, and barley, and to some extent, wheat; are all grown in the same fields, often in rotation one year after another. So there will always be some "wild" shoots sprouting from the seeds of the previous year's crop to contaminate the current crop. This problem does not occur with rice because rice is cultivated in an entirely different way. Another point to consider: The studies that were done used 50 grams of oats per day, which is a little under two ounces. That is not very much, and may not have been at a high enough level to cause any significant intestinal damage in only six months. So unless you can get a hold of a batch of oats as pure as that used in the Finnish study, oats are probably not safe for celiacs. Q: I have optic neuropathy, which has been attributed to my CD. Do you see this very often? A: There are several eye problems that can relate to CD in many ways. Vitamin A deficiency is the most important factor. Other related causes include autoimmune neuropathy, in which the body's immune system attacks other tissues, and the optic nerve is one possibility. If Vitamin A is taken in very large quantities then eye problems can develop as well as intercranial hypertension (high pressure in the fluid surrounding the brain). This is another reason why you should not go off and take massive amounts of vitamins without professional advice. Q: Is alcohol consumption a factor in causing, worsening, or contributing to the development of CD? A: Yes, if it is whiskey or beer, because these come from a gluten grain. But alcohol itself probably does not bring on the damage associated with CD, and may even suppress some of the symptoms by making you feel "good" (i.e., intoxicated). For anybody to drink more that two alcoholic drinks per day, five days a week, is probably not a good idea. For women, that is just about the threshold for causing liver damage, regardless of whether you are a celiac or not. Also, celiacs may be more sensitive to the effects of alcohol. Q: Can you touch on the importance of being biopsied before going on a GF diet? A: Things get difficult when you come to a GI specialist after having already been on a GF diet. At best, you will be facing a gluten challenge, which may take some time to define it; and you may get really sick. I'd say about half of the patients who come to me in that situation cannot tolerate being on a gluten challenge. If somebody who does not have a family history of CD comes to me and says, "I think I have CD. Do I really need a biopsy?:" Well, it may be important for their family. He may think he has CD and has gotten better due to the GF diet, but he may not actually have it. Q: Please discuss intestinal complications associated with CD. A: Lymphoma is one of the complications. It is a cancer of the lymphocytes, which are the same cells that attack gluten and your body, causing the intestinal damage. Those cells are growing and dividing at an accelerated rate to fight off the gluten, and then something triggers one to turn into a lymphoma. It is rare in treated celiacs, but it does happen. It is like smoking and lung cancer; the longer you've stopped smoking the less chance you have of getting lung cancer. The longer a celiac has been GF with a healed small intestine, the lower the chance of getting lymphoma. After 20 years on a GF diet your chances of getting lymphoma are very small. If a child is diagnosed with CD and sticks to a lifelong GF diet, the odds of getting lymphoma are probably the same as for the non-celiac population. Q: Is the danger of intestinal cancer as high with DH if you are not completely compliant to the GF diet? A: It is probably not quite as high in DH as in CD, but it still happens and there still is an excess of lymphomas in DH patients, especially in middle-aged men. Q: What causes ulcers? A: Most duodenal ulcers are caused by a bacterium in the stomach. If you treat that bacterium, the ulcer will disappear and not come back about 90% of the time, except for patients on arthritis drugs. But there is a smaller group of people who have duodenal ulcers caused specifically by CD. These ulcers go away on a GF diet. Currently, duodenal ulcers are detected by performing an endoscopy to see the ulcers and taking a stomach biopsy to find the culprit bacterium. Once this has been done the ulcers are treated by using antibiotics to combat the bacterium which is responsible for the ulcer. I like to go farther and take a biopsy from the duodenal area [which is the first section of the small intestine--ed.] Also, because I've found that for some of our patients the ulcer is not caused by the bacterium, but rather by untreated CD. Q: Can you have dermatitis herpetiformis (DH) without having CD? A: If you have DH, then you have an intestinal sensitivity to gluten. If you eat gluten, you will have some damage to your intestine. That damage may become more significant as you get older. I've seen patients that managed just fine for years using dapsone, who then come in to see me, complaining of GI symptoms. The treatment for both CD and DH is a GF diet. If you have DH you may also find some relief from dapsone, which suppresses the symptoms until the diet takes effect. Q: Is there an association between Down's Syndrome and CD? A: People with Down's Syndrome are much more prone to having CD. Different studies suggest anywhere from 2-40% of Down's Syndrome patients have CD. Down's Syndrome patients are prone to other autoimmune problems such as thyroid disease. It is not known if CD occurs in African-Americans or Asians with Down's Syndrome; this just hasn't been studied. Q: Is TPN (Total Parenteral Nutrition) GF? A: It is pretty reliably GF. Another thing to consider is that you can't get a gut reaction from it, because it bypasses the gut entirely. Q: Can you touch on bone pain? A: The most common cause of severe bone pain with untreated CD is osteomalacia, which is malformation of the bones due to lack of Vitamin D and calcium. It affects mostly the hips, and sometimes the shoulders and back. It usually gets better with specific treatment, which includes the GF diet for celiacs and sometimes includes Vitamin D supplementation and other interventions. Another cause of bone pain is osteoporosis. It can often cause pain in the back, due to vertebrae which have become shortened and have begun squeezing the nerves. This condition is very painful and is not going to get better; once the vertebrae have shortened they are not going to stretch back up to their original size. Muscle pain can also occur, due to Vitamin D deficiency. I have seen some leg pains as the initial presentation of CD which cleared up with the GF diet. Q: Is there any kidney disease associated with CD? A: Yes: IgA nephropathy, which is a common condition causing blood in the urine (possibly in microscopic amounts that would not be detected visually), may be caused by CD. This may be similar to what happens in DH, where antibodies produced in the intestine get deposited under the skin. In IgA nephropathy, you've got IgA that was produced somewhere (we don't know where) getting deposited in the kidneys, causing secondary damage to the kidneys. Q: What is the treatment for arthralgia (joint pain)? A: Celiacs with arthralgia at the time they are diagnosed often get better on a GF diet. Sometimes anti-inflammatory drugs are needed. Occasionally there are other dietary sensitivities which cause arthralgia. Q: Is there any research being done on finding something to counteract gluten? A: It is being "thought about", but there is no current research. Researchers are thinking about how you can "turn off" the immune system's response to gluten. The problem is, it may turn off more than just the response to gluten, which would be a problem. What we need is for the immune system to recognize foreign invaders, but not recognize gluten. I think we are a long ways from coming up with a safe, acceptable alternative to the GF diet. Q: I have both lupus and CD. What studies have been done to determine the frequency of CD in lupus patients? A: There hasn't been very much research in this area. It is probably a little bit more common than in the general population. CD is also more common in scleroderma and Sjogren's patients. That is because these diseases all come from the same autoimmune tendencies. Q: What can you say about the importance of having first-degree relatives screened for CD? A: I think it is important. We find a significant number of our patients by looking at family members of celiacs. It is always better to avoid illness. If someone has CD it is a whole lot better to find out about it early, and to be on a GF diet. It is still somewhat debatable in expert circles as to how you handle the asymptomatic family member who has intestinal damage. Some people say it is a greater hardship to impose a GF diet on them when they are not symptomatic. I tend to think otherwise. I say it is a whole lot better for them to avoid getting sick by learning to avoid gluten from an earlier age. Why isn't CD suspected by gastroenterologists more often? For one thing, they are being taught in this country that it is very rare. Many gastroenterologists, from very fine, world-class programs, have never seen a case of CD. Why? Because many of those programs are based in inner cities, where CD is not all that common. Or they come from centers that are specialized. 30 years ago Inflammatory Bowel Disease (IBD), which collectively refers to Crohn's disease and ulcerative colitis, was considered to be a mystery. President Eisenhower had Crohn's disease and people were amazed because it was thought to be so rare. More recently, we learned that President Bush's son had either Crohn's disease or ulcerative colitis, and there was not much of a public reaction. So in 30 years public awareness of IBD has greatly increased. The Crohn's/Colitis Foundation (CCFA) is probably the single best-organized support organization for furthering knowledge about IBD. It funds research in most medical centers. There are GI Fellows that are funded by the CCFA, some of whom go on to be faculty in our medical schools where they teach about IBD. So most gastroenterologists come out of medical school knowing a lot about IBD. And a lot of it is due to the efforts of the CCFA. Ulcer research has been funded mostly by drug companies, who are trying to find better ways to treat ulcers. As a result, ulcers are also in the public eye. CD has been more "covert". However, that is changing. In Iowa, many private practitioners that were not diagnosing any CD five years ago are now diagnosing 10-12 new cases a year, simply because they've become more aware of it. The efforts are beginning to pay off: internet efforts, the various support organizations getting hooked up with people like Dr. Alexander [our group's physician advisor], spreading and exchanging information. But the pity is that all these efforts are not on the level of an organization such as the CCFA. That sort of effort is what really gets attention and gets built into the curriculum at medical schools. Q: Are Vitamin B-12 shots often given to celiacs? A: Vitamin B-12 deficiency is usually caused by a malabsorption problem. B-12 is important for nerve function and for making blood cells. A B-12 deficiency can cause temporary problems with making blood cells, but with nerve function the damage may be permanent or only improve months or years later. So if a patient is B-12 deficient then regular shots are generally used to ensure that the levels of B-12 are adequate. The shots bypass the intestine, so any malabsorption problem is avoided. The shots are safe and cheap, whereas the tests for B-12 absorption are not; so I will often put someone at risk for B-12 deficiency on B-12 shots for the rest of their life. The problem with B-12 deficiency is that the first symptom to show up may very well be a serious neurological symptom that the patient may not recover from. Q: Can a person who tests allergic to gluten also have CD? A: When you speak of an allergy, you aren't talking about gluten. Some people have a wheat allergy, with symptoms such as hives, swelling, etc.. That doesn't mean they have CD; but like a celiac they certainly should not eat wheat. Some celiacs develop other allergies, probably because their gut is more permeable due to the villi damage. They can get allergies to other things (not just wheat) such as peanuts or shellfish. Q: How important are periodic bone density tests? A: I would tend to do a bone density test on most adult patients at least once at the time of diagnosis. If the test comes back normal, then I don't usually repeat it. If it is very low, then I tend to repeat it 18-24 months later to see how much improvement has occurred. Disclaimer: ----------- No liability is assumed. Individuals should consult their physicians and dietitians before following any medical or dietary recommendations published here. Original material used in The Sprue-nik Press is placed in the public domain for the benefit of all celiacs. The Sprue-nik Press is published by the Tri-County Celiac Sprue Support Group (TCCSSG), a local chapter of CSA/USA located in southeast Michigan. Members receive this newsletter, a shopping guide, and a new member packet full of articles and useful information. Mail-in subscriptions are welcome. 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Mary Guerriero
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