Expert Postings. Jun - Sept 1997

Copyright by Michael Jones, Bill Elkus, Jim Lyles, and Lisa Lewis 1997 - All rights reserved worldwide.
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This file contains postings made by the following professionals: 
 
Donald D. Kasarda, Ph.D.--a research chemist with the United States 
   Department of Agriculture.  Dr. Kasarda has worked on grain proteins 
   in relation to grain quality for 30 years.  He has colloborated with 
   medical groups working on celiac disease for about 25 years and has 
   often been used as an informal consultant by support groups. 
 
Joseph Murray, M.D.--a gastroenterologist at the University of Iowa, 
   USA, where they have a mutidisciplinary service for the clinical care 
   of people with celiac disease.  They are also involved with clinical 
   research and medical education related to celiac disease. 
 

Date: Wed, 9 Jul 1997 18:40:25 PDT From: "Donald D. Kasarda" (kasarda@PW.USDA.GOV) Subject: Farro or Faro I have had two people contact me recently about the grain Farro or Faro on the basis of a New York Times article on the grain that stated that, "Farro is not wheat, but a plant and grain all its own." I thought that farro was wheat and a check with an Italian colleague resulted in the information that Farro is in fact wheat. It is traditionally Triticum dicoccum, but spelt is often being sold as Farro these days. In either case, Farro would not be suitable for people who have celiac disease. Also, I heard a presentation at a recent meeting in which the speaker reported that quinoa and amaranth were both high in oxalates, almost as high in oxalates as spinach. The speaker also indicated that this might cause gastrointestinal problems in very young children. I don't know what research this is based on, it was new to me, and I tried to find the speaker later in the meeting to ask him about the source of this information, but I was not successful in finding him. Accordingly, I pass on the information with no further comment. Although I suspect his analyses are correct, I don't know if his information about foods high in oxalate possibly causing gastrointestinal problems for young children is correct. Don Kasarda Albany, CA ========================================================================= Date: Wed, 16 Jul 1997 13:34:12 -0500 From: Joseph Murray (Joseph-Murray@MAIL.INT-MED.UIOWA.EDU) Subject: re gluten challenge in celiac disease I read the comments that people had on a gluten challenge. As a gastroenterologist who does this quite a lot, I would like to make some comments. Firstly, this illustrates the need to test for celiac disease prior to the institution of a gluten free diet. This is an issue not so much for patients as it is for doctors to realize and test for it at an earlier stage of some one's problems. If a person thinks they may have it, please they should ask for test before they start on gluten reduction. Regarding doctors who have CD and whether they get biopsied, they should follow what they recommend for patients, rather than the other way around. Most experts do not require a second biopsy to prove healing in younger patients though in older patients it may be helpful . Exceptions to this include very young infants ( undr the age of one) and populations where other disease that can mimic celiac disease occur) In patients who are not doing well then a biopsy is essential to the investigation of those patients. It is helpful to have the first one to compare it with. The techniques for biopsy have improved to the point that they should be a routine outpatient test in both adults and children. I would advocate that all biopsies should be done by experienced gastroenterologists in the case of adults and Pediatric trained gastroenterologists in children. Regarding diagnosing people already on a gluten free diet for a long time who are now symptoms free but had a terrific history of severe reactions I carefully access the risk. If there is a history of anaphylaxis, suicidal tendencies I am very loathe to try it at all. Other issues relate to relative risks such as nutritional status, associated diseases, like insulin dependent diabetes can all make it a little more risky to do it. In the end it is the patient that should decide on a gluten challenge, with the doctors agreement. (i will occasionally put a patient off the challenge due to some of the concerns above) This a short comment on what is a very complex issue. This is not medical advice and should not be used as such. Joseph A Murray, MD Coordinator, Celiac Disease Clinic, Associate Professor of Medicine, Division of Gastroenterology/Hepatology, University of Iowa, 200 Hawkins Drive, Iowa City, IA 52242 ========================================================================= Date: Thu, 28 Aug 1997 07:44:47 -0500 From: Joseph Murray (Joseph-Murray@MAIL.INT-MED.UIOWA.EDU) Subject: untreated celiac disease While one can not predict the exact outcome for an individual patient who decides not to adhere to a gluten free diet, you can make some predictions based on their prior symptoms and the published experiences of larger centers examining both patients with delayed diagnosis (into later life) and outcome studies comparing non-compliant patients with compliant patients. The risk for the development of malignancy is higher in untreated patients. There is also the significant risk for osteoporosis. General ill health and continued GI symptoms can be expected in most patients though they may not be as severe as the initial presentation especially if the patient eats a little less gluten. Things like lactose intolerance, bloating often don't go away in the partailly treated patient. There are individuals who don't seem to have many symptoms at all but the damage may still be ongoing in the intestine. Problems with nervous system, infertility and joints may also occur and the patient may not realise that the gluten could be contributing to these also. This is not medical advice and is only a partial discussion of the topic. Joseph A Murray, MD Coordinator, Celiac Disease Clinic, Associate Professor of Medicine, Division of Gastroenterology/Hepatology, University of Iowa, 200 Hawkins Drive, Iowa City, IA 52242
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