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Archive for the ‘The Past and Present’ Category

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History of Celiac Disease

Posted by Kathy Dee Zasloff on August 18, 2008

I have found this historical accounting of Celiac Disease to be very thought provoking. I believe that Coeliac is the British spelling for Celiac Disease.

I can say that the diet referred to in this accounting as the “Hass diet” is what I lived on as a child. I ate lots of ripe bananas, rice and cottage cheese.

History of the Coeliac Condition
By: Dr James S. Steward, Consultant Physician, West Middlesex University Hospital, Isleworth, Middlesex.

About 10,000 years ago, after the end of the last Ice Age, people learnt that hunting animals and gathering wild berries and other fruits were not the only ways of supporting life. They discovered that if they settled in one place for long enough they could sow and then harvest crops of cereals like wheat. This was the neolithic revolution. One of its consequences was civilization. Another was that people who could not tolerate wheat in their diet became ill with the coeliac condition.

The first description of childhood and adult coeliac disease was written in the second half of the second century A.D. by a contemporary of the ancient Roman Physician, Galen. He is known as Aretaeus of Cappadocia and his writings which have survived to more recent times were edited and translated by Francis Adams and printed for the Sydenham Society in 1856. The original Greek Text of the sections on “The Coeliac Affection” suggests that Aretaeus may possibly have understood a remarkable amount about the coeliac condition.

The chapter on “The Coeliac Diathesis” describes fatty diarrhoea (steatorrhoea) for the first time in European literature and then proceeds to give an account of several other features of the condition including loss of weight, pallor, chronic relapsing and the way in which it affects children as well as adults. The chapter on “The Cure of Coeliacs” opens with the first passage in which these patients are specifically called coeliacs: “If the stomach be irretentive of the food and if it pass through undigested and crude, and nothing ascends into the body, we call such persons coeliacs”. While some people with disorders which may mimic the coeliac condition were doubtless unwittingly included in this description, the same is true for subsequent descriptions until the second half of this present century. The Greek work “koiliakos” used by Aretaeus had originally meant “suffering in the bowels” when used to describe people. Passing through Latin, ‘k’ became ‘c’ and ‘oi’ became ‘oe’. Dropping the Greek adjectival ending ‘os’ gave us the word coeliac.

It was not until seventeen centuries after Aretaeus that there follows the next clear clinical account of childhood and adult coeliac condition. In 1888 Samuel Gee, using an identical title to Francis Adams’ translation, “The Coeliac Affection”, gave the second classic description of the condition. Several passages from Gee’s account have often been quoted as prophetic, particularly “to regulate the food is the main part of treatment … The allowance of farinaceous foods must be small … but if the patient can be cured at all, it must be by means of diet.” During the early part of this century the doctors most responsible for increasing the understanding of the coeliac condition were looking after children. This may well have been because coeliac children tend to respond more rapidly and more dramatically than adult coeliacs to successful dietary treatment. Whatever the reason, children’s physicians (pediatricians) continued to lead the advance in the treatment of this disease, leaving the main discoveries on diagnosis to physicians caring for adults.

In 1908 there appeared a book in coeliac children by Herter, a paediatrician accepted as such an authority on this subject that the condition was often referred to as Gee-Herter’s disease. His most important contribution was his statement that fats are better tolerated than carbohydrates. This original observation was later supported by Sir Frederick Still, another famous paediatrician who, in a memorial lecture to the Royal College of Physicians in 1918, first drew attention to the specifically harmful effects of bread in coeliac disease. “Unfortunately one form of starch which seems particularly liable to aggravate the symptoms is bread. I know of no adequate substitute.”

This theme was developed further by Howland in a farsighted presidential address to the American Pediatric Society in 1921 on “Prolonged Intolerance to Carbohydrates” describing the treatment of children with coeliac disease. “From clinical experience it has been found that, of all the elements of food, carbohydrate is the one which must be excluded rigorously; that with this greatly reduced the other elements are almost always well adjusted even though the absorption of fat may not be so satisfactory as in health.” His three-stage diet allowed carbohydrates only in the last stage, when they had to be added, “very gradually with the most careful observation of the digestive capacity … Bread, cereals and potatoes are the last articles which can be allowed. The treatment is time consuming but these patients will repay the effort expended on them.”

Three years later came the banana diet advocated by Haas, which was essentially a diet low in carbohydrate except for ripe bananas. In a later paper, in 1938, Haas noted that a minute amount of some foods containing carbohydates will produce fatty diarrhoea even when the patient is taking hardly any fat in the diet, but a high carbohydrate intake in the form of banana will be well tolerated even though a much larger amount of fat is eaten.

After the 1939-45 war came a fundamental discovery, which proved to be the main advance in the treatment of coeliac children and adults alike. This discovery was made and described in detail by a Dutch paediatrician, Professor Dicke, in his doctoral thesis for the University of Utrecht in 1950. He showed how coeliac children benefited dramatically when wheat, rye and oats flour were excluded from the diet. As soon as these were replaced by wheat starch, maize flour, maize starch or rice flour the children’s appetite returned and their absorption of fat improved so that the fatty diarrhoea disappeared.

This work was confirmed and extended by Charlotte (now Professor) Anderson and her colleagues in Birmingham, who extracted the starch and some other constituents of wheat flour and found that “the resulting gluten mass” was the harmful part. Since 1950, therefore, the basis of treatment of coeliac patients has been the gluten-free diet.

The original observation which, together with Processor Dicke’s discovery, led to our present understanding of the nature of the coeliac condition was made by Dr. J. W. Paulley, a physician in Ipswich, and reported to the British Society of Gastroenology in Birmingham in the same year as Professor Dicke’s discovery. Dr. Paulley described an abnormality of the lining of the small intestine found at the operation in an adult coeliac patient. This abnormality consisted of an inflammation, the exact nature of which is still being investigated. The existence of this inflammatory change was confirmed in several patients by Dr. Paulley and was then found by many doctors in this country, the United States and elsewhere to be the most essential single feature on which the diagnosis of the coeliac condition could be based. Its importance to the patient is that it results in a loss of the microscopic projections or villi, which are partly responsible for providing the lining membrane of the small intestine with a large surface area. It is from this mucous membrane lining that the absorption of food into the bloodstream takes place.

It is encouraging to note that treatment with a strict gluten- free diet usually leads to a return of the “flat” lining of the coeliac small intestine to the normal stage. On the whole, the younger the patient, the more dramatic the improvement tends to be, but the most important single point is the strictness of the diet.

Within three years of Dr Paulley’s discovery an American physician, Colonel Eddy Palmer, used a tube which had been designed to take a tiny piece of the lining of the stomach to help find the cause of a different disorder, changed it slightly and slipped it into the small intestine of patients who had part of their stomach removed at a previous operation for something which had nothing to do with the coeliac condition. His paper (1953) includes an excellent photograph of normal intestinal lining obtained by this technique.

Two years later some doctors in Argentina made the biopsy tube more flexible so that it could pass through the intact stomach into the small intestine. In 1956 Dr Margo Shiner introduced further changes so that intestinal biopsy became the standard technique for diagnosis of the coeliac condition. Dr (later Professor) Israel Doniach, with whom the young Dr Shiner did this work at the Hammersmith Hospital in London, interpreted the changes in the intestinal lining of the coeliac patients.

Next year a completely flexible biopsy tube was designed by another American army officer, Colonel Crosby, working with an engineer, Kugler. Their instrument, known as the Crosby capsule, soon became the most widely used biopsy instrument throughout the world.

In the 1960s Physicians caring for disorders of the skin (dermatologists) discovered that a particular type of itchy rash call dermatitis herpetiformis may also be associated with atrophy of the villi and usually responds to a strict gluten-free diet.


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Call for comments in the Federal Register

Posted by Kathy Dee Zasloff on August 18, 2008

On August 8th, 2008 there was a call for comments for the new labeling law that is coming soon.

To see the complete request please go to: The Federal Register

If you think that your words don’t count, think again. My experience is that when it comes to making sure that people in government have all the correct information, I found that if I didn’t tell them what I thought they needed to know, often they never got the correct information. It’s important that we all voice our thoughts and opinions.

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Is There More Celiac Disease or Better Awareness?

Posted by Kathy Dee Zasloff on July 14, 2008

In 2005 I was hunting for a recipe on the Today Show web site and saw a link to Celiac Disease (CD). As I was diagnosed as an infant with CD that caught my interest. Three years later with lots more links and experiences, there’s much more information for me and lots of other people.

Here’s some of what I learned in the beginning:

From June 28 to 30, 2004, The National Institute of Health convened a Consensus Conference to look at the prevalence of Celiac Disease in the United States. Having some previous experience in health related Government activities. I was in awe at the list of people who came together for the Consensus Conference. Clearly, this was a serious undertaking. Click here to go to the NIH Awareness Campaign

The NIH was interested in knowing:

  • How is celiac disease diagnosed?
  • How prevalent is celiac disease?
  • What are the manifestations and long-term consequences of celiac disease?
  • Who should be tested for celiac disease?
  • How is celiac disease managed?
  • What are recommendations for future research on celiac disease and related conditions?

There was one recommendation.

To educate physicians, dietitians, nurses, and the public about celiac disease by a trans-NIH initiative, to be led by the NIDDK*, in association with the Centers for Disease Control and Prevention. The first CD Awareness Campaign newsletter came out in the Fall of 2005.

*The National Digestive Diseases Information Clearinghouse (NDDIC) was given responsibility for developing the Celiac Disease Awareness Campaign. NDDIC is an information dissemination service of the NIDDK. The NDDIC was established in 1980 to increase knowledge and understanding about digestive diseases among people with these conditions and their families, health care professionals, and the general public. To carry out this mission, NDDIC works closely with a coordinating panel of representatives from Federal agencies, voluntary organizations on the national level, and professional groups to identify and respond to informational needs about digestive diseases.

I can tell that the awareness campaign is working. My friends send me articles, recipes from the news, or they ask me if I’ve seen this or that book, tv show or news item. Recently, a classmate of mine was diagnosed with Celiac Disease. She tested positive for CD and was clearly not prepared for the diagnosis. In fact, I don’t know that she was informed that she was being tested for CD. In addition to being told she tested postivie for CD, she was also told that she is a-symptomatic. That means she has “no symptoms.” I don’t know what her Dr. told her, but in my conversations with her it certainly didn’t sound complete. But at least she knows.

Remember, as of this date (July 14th, 2008) 95% of people with CD are undiagnosed.

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