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WHATEVER HAPPENED TO THE CURE FOR COELIAC DISEASE?

Whatever happened to the cure for coeliac disease?

February 20th, 1997

Whatever happened to the cure for coeliac disease?

Until 1952, the most prominent experts in coeliac disease - a wasting condition associated with the severe malabsorption of food - agreed that it was caused by carbohydrate intolerance, the inability to digest certain types of carbohydrate. A diet avoiding these carbohydrates was found to treat the condition effectively. Then an article in the Lancet started the current fashion that coeliacs are merely allergic to gluten. The success of a gluten-free diet, however, required the diagnosis  of coeliac disease to be thenceforth restricted only to those patients who benefited from such a diet. Author and researcher Elaine Gottschall explains that this change has left thousands of people with severe symptoms which are going undiagnosed and untreated.


By Elaine Gottschall
Nutritional Therapy Today, Vol 7, No 1, 1997, page 8-11

The last time anyone counted, there were 15,000 named diseases of man, and cures for 5,000 of them. Yet it remains the dream of every young doctor to discover a new disease. That is the fastest and surest way to gain prominence within the medical profession. Practically speaking, it is much better to discover a new disease than to find a cure for an old one; your cure will be tested, disputed and argued over for years, while a new disease is readily and rapidly accepted.
(Michael Crichton) [1].

Coeliac disease appears to have always existed. Because its numerous symptoms mimic those of several other conditions and because an obvious cause has been elusive throughout the years, its recognition as a distinct disorder and one which physicians could readily diagnose has been fraught with disagreement.

One of the first descriptions of this disorder was given in the early years of the Roman Empire by the physicial Aretaeus, who refers to " coeliac disease" as a chronic diarrhoea condition consisting of undigested food, lasting an extended period, and a debilitation of the whole body. [2] Arataeus described the diarrhoea as being light in
colour, offensive in odour, and accompanied by flatulence. Additionally the patient is described as "emaciated and atrophied, pale, feeble, incapable of performing any of his accustomed works."

In 1855, Dr Gull writing in Guy's Hospital Reports [3] outlined the symptoms found in a 13 year-old boy that clearly suggest coeliac disease as we understand it today: enlarged abdomen, frequent and voluminous stools of a dull, chalky colour.

A few years later, in 1888, Dr Samuel Gee laid the foundation for not only describing the condition, but also establishing criteria for diagnosis. Additionally, he established guidelines for successfully treating the condition with a dietary approach. In his classic report "On the Coeliac Affection", he wrote There is a kind of chronic indigestion
which is met with in persons of all ages, yet is especially apt to affect children between one and five years old Signs of the disease are yielded by the faeces; being loose, not formed, but not watery; more bulky than the food taken would seem to account for; pale in colour, as if devoid of bile, yeasty, frothy, an appearance due to fermentation; stench often very great, the food having undergone putrefaction rather than concoction. The causes of the disease are obscure. Children who suffer from it are not all weak in constitution. Errors in diet may perhaps be a cause, but what error? [4]

Despite the meagreness of Gee's information about coeliac disease, he saw clearly several important facts that escaped many later investigations: (1) If the patient can be cured at all, it must be by means of diet and that cow's milk is the least suited kind of food, that highly starchy food, rice, sago, corn flour, are unfit.

(2) We must never forget that what the patient takes beyond his power of digestion does harm. (Gee implied that unfit foods played more than a negative role and actually produced a pathologic condition in the digestive tract.)

Intestinal Fermentation

For many years there were numerous reports on the cause as well as the treatment for what appeared to be coeliac. While these inconsistent and inconclusive reports appeared in Europe, there was much less interest in North America. Shortly after the turn of the century, however, Drs L Emmett Holt Sr, Director of Children's Medicine at Bellevue Hospital, and Christian Herter of Columbia University worked together for over seven years on the clinical as well as the theoretical aspects of this disorder. Their conclusions, published in 1908, entitled On Infantilism from Chronic Intestinal Infection included the following main points:

(3) There is a pathological state of childhood marked by a striking retardation in growth of the skeleton, the muscles and the various organs and associated with a chronic intestinal infection characterised by the overgrowth and persistence of bacterial flora belonging normally to the nursling period.

(4) The chief manifestations of this intestinal infantilism are arrest in the development of the body but maintenance of good mental powers and a fair development of the brain; marked abdominal distention; a slight or moderate or considerable degree of simple anaemia; the rapid onset of physical and mental fatigue; irregularities of intestinal digestion resulting in frequent diarrhoeal seizures. [5]

Drs Holt and Herter continued in their monograph to describe the dominant bacteria found in the stools as well as some of the byproducts of intestinal fermentation and putrefaction. They noted that fat appeared in the stool and attributed this to impaired fat absorption. Also, note was made of increased mucus in the stool along with evidence of abnormal shedding of intestinal cells. They continued to stress that two leading features of this intestinal infantilism must be further investigated:
(5) The retardation of growth;
(6) The chronic intoxication.

They commented that retardation in growth could be attributed to malabsorption of nutrients and the malabsorption could probably be due to a chronic inflammation located in the ileum and colon associated with the presence of abnormal forms of bacteria. The chronic intoxication, they were certain, resulted from the action of products of bacterial origin with the toxins having as their main target the nervous system and muscles.

They concluded their treatise by stating: Temporary relapses are very common in the course of this disease, even when great care is being taken to prevent them. The most frequent cause of such relapses is the attempt to encourage growth by the use of increased amounts of carbohydrates.

Disordered Carbohydrate Digestion

Although Herter's conclusions failed to gain acceptance, his observations were so perceptive that further researchers "stood on his shoulders" in pursuing the most effective dietary treatment. He saw that in every case proteins were very well handled, fats were handled moderately well, while carbohydrates were badly tolerated, almost invariably causing relapse or a return of diarrhoea after a period of improvement. He said, "It has been already mentioned that the carbohydrates are the obvious and fruitful cause of derangements of digestion that are clinically determinable, especially diarrhoea and flatulence."

Meanwhile, the interest shown by Drs Holt and Herter had been transmitted to Dr Holt's two younger assistants at the Vanderbilt Clinic, Dr John Howland and Dr Sidney V Haas. In 1921, Howland, in his presidential address before the American Pediatric Society, read a paper on "Prolonged Intolerance to Carbohydrates"[6]. Although Howland did not use the term coeliac disease (the condition was still known by a great variety of names) he described his cases vividly: There are loose stools from time to time with loss of weight. The condition improves between the attacks somewhat, but sooner or later a relapse occurs and there is a renewed loss of weight. The relapses are increasingly severe. Eventually, there is a condition of marked malnutrition in a peevish, fretful, but often precocious child. The abdomen is distended at first  intermittently, and then almost constantly. The stools are never normal Even between attacks of diarrhea they are large, light gray in color, often frothy, and usually very foul.. Growth suffers in proportion to the length of time that the symptoms persist, and many children are greatly below the average in height. 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 protein and fat are almost always well digested even though the absorption of fat may not be as satisfactory as in health.

Dr Howland warned that after initial improvement occurs with the elimination of carbohydrates, the stage where carbohydrates are added is the most difficult. He explained that although the initial phase may be time consuming, "these patients well repay the efforts expended on them. They do not remain semi-invalids, many become vigorous and strong, some even with no trace of dietary idiosyncrasies... Halfway measures are quite unavailing and cause only loss of time.' Other doctors confirmed Howland's treatment as achieving greater success than any previous one, but the need for some tolerable carbohydrate in the coeliac diet remained.

Specific Carbohydrate Diet™

Despite the remarkable success of Dr Howland's treatment with emphasis on carbohydrate restriction, other doctors, distracted by the occurrence of fatty stools continued to believe that dietary facts were at fault. But although there was some confusion resulting from this belief, there was a steadily increasing recognition of the primary role of disordered carbohydrate metabolism and digestion in causing coeliac disease.

Dr Sidney Valentine Haas, working with Dr Howland, was in full agreement with Dr Howland's work but was interested in learning if some form of carbohydrate could be added to the diet to hasten recovery and provide a more varied and nutritious diet. He had noted reports throughout the years whereby children with severe diarrhoea had done very well on banana flour (made of 70 per cent ripe banana) and plantain meal. It was at the Home for Hebrew Infants that Dr Haas first experimented with banana feeding [7]. One of his patients was an infant who had difficulty in eating. The baby refused all food. Dr Haas offered the baby a banana. At that time, banana was considered completely indigestible by a sick child. Everybody was horrified at the idea of feeding it to an infant everybody, that is, except the infant, who not only took it but asked for more. He was given more and thus Dr Haas discovered the banana could be well tolerated.

He then decided to experiment with the banana, as the sought after carbohydrate source, in the dietary treatment for coeliac. He soon discovered that coeliacs could tolerate this carbohydrate, and, more than that, the banana could be fed in large quantities with beneficial effects. He further experimented with carbohydrate containing fruits and some vegetables and found that they, too, could be tolerated and the coeliac could regain health on a far more varied diet than just protein and fat.

During the next few years, Dr Haas treated over 600 cases of coeliac disease with his Specific Carbohydrate Diet™, maintaining his patients on it for at least 12 months, and found that the prognosis of coeliac disease was excellent. "There is complete recovery with no relapses, no deaths, no crisis, no pulmonary involvement and no stunting of growth." [8]

By 1949, Dr Sidney Haas's reputation was known throughout the world and on April 5th of that year, more than 100 leading physicians met at the New York Academy of Medicine to pay him tribute. The New York Times reported: Today, on the occasion of the fiftieth anniversary of his entrance into the medical profession, one of America's great pediatricians, Dr Sidney V Haas, is being honored for his pioneer work in the field of pediatrics. Among Dr Haas's most important accomplishments was in the treatment of celiac disease, a digestive disturbance in which the child is intolerant of starchy food, and which was generally fatal at the time of his original work. Following his discovery that the carbohydrate in bananas could be tolerated by celiac patients, Dr Haas developed an accepted routine therapy which laid the basis for later research and basic treatment in this field. [9,10]

In 1951, Dr Haas, together with his son, Dr Merrill P Haas, published The Management Of Celiac Disease, the most comprehensive medical text that had ever been written on coeliac disease [11]. With 670 references to published reports, the book described coeliac disease more completely than had ever been done before. The Drs Haas presented their success with the Specific Carbohydrate Diet™ and offered their hypothesis in the last chapter of their book as to why the diet was effective. After decades of searching, it appeared that not only was an effective and lasting dietary treatment found, but that the Haas Specific Carbohydrate Diet™ was accepted by medical colleagues throughout the world as a cure for coeliac disease.

Protein vs. Carbohydrate Battle

But as Michael Crichton has written, "the battle" continued. Within one year after the publication of the Drs Haas's book, a singular report appeared in the English medical journal Lancet [12]. A group of six faculty members of the Departments of Pharmacology, Paediatrics and Child Health of the University of Birmingham, after testing only 10 children, decided that it was not the starch (carbohydrate) in the grains that so many had reported as being deleterious, but it was the protein gluten in wheat and rye flour that was causing coeliac symptoms.

They concluded their Lancet report by stating in their summary: Gastro-intestinal function was investigated in 10 children with; coeliac disease. The changes were very similar to those in adult idiopathic steatorrhoea. The removal of wheat flour from the diet resulted in rapid improvement, both clinically and biochemically. Deterioration followed the reintroduction into the diet of wheat flour or wheat gluten, but wheat starch had no harmful effect. Did you know? If you thought that sweetcorn was a gluten-free food, think again! Gluten is one of the most important byproducts of maize, and bags of corn are sold as animal feed. In the making of cornflour, the hardest part is separating the gluten from the starch.

They contradicted all previous work by stating that there was no need to restrict carbohydrates and, therefore, an unlimited choice of food could be ingested, provided that wheat and rye gluten were excluded. Further, 'a high caloric diet may be given throughout with biscuits made from cornflour, soya flour, or wheat starch instead of wheat flour."

They maintained that it was not the starch in grains that was the culprit but that it was the protein gluten and that when the gluten was 'washed out" of the flour, the remaining starch was perfectly fme. And overnight, the hypothesis gained ready acceptance. No need now for doctors to worry about adherence to a diet which eliminated specific carbohydrates found in many foods; only one dietary exclusion would have to be made: the gluten in wheat and rye flour. No need to delve into food biochemistry and ask why gluten-containing foods such as corn would be considered permissible; it was to be a "black and white" remedy with no shades of grey.

Some patients showed remarkable clinical improvement in their general well-being after following a "gluten-free" diet. However, biopsy samples, as viewed under the microscope, showed intestinal cells that were still markedly abnormal 13. In addition, some patients who started eating gluten suffered no ill effects at one time but became extremely ill at other times. Thus, not only do different coeliac patients vary in their response to a gluten-free diet but the same patient may vary from time to time [14]. When the all too common relapse occurs, the patient is most often told that he/she must have inadvertently consumed gluten, and it is common for patients to become so nervous about making a mistake that they assume that anything on a product that begins with 'glut" must be gluten: glutamic acid, glutamine, monosodium glutamate, etc. Or that gluten had somehow crept into the food in spite of the fact that it did not appear on the label.

It soon became apparent that grains which contained proteins other than gluten were having deleterious effects on the digestive tract. Some patients suffered relapses and exhibited damaged intestinal cells (microscopically) upon eating soy products (15, 16). Oats and barley were found to contain gluten-like proteins which offended many  coeliac sufferers [17].additional reports implicated rice as well as other grains as being harmful to intestinal cells (18, 19).

Restricted Diagnosis

But the diet to manage coeliac disease had been simplified and there now remained the problem simplifying the diagnosis. It was decided that the new diagnostic tool, the intestinal biopsy instrument, would be used to identify coeliac. In spite of the symptoms the patient manifested, the patient would not be diagnosed as a true coeliac until other criteria were met. A series of intestinal biopsies would be done: one tissue sample would be taken from the small intestine before gluten was removed from the diet; a second sample would be taken after the patient had been on a "gluten-free" diet. The biopsy samples would have to reflect the changes in the diet. When viewed under the microscope, the intestinal surface would have to appear flattened or blunted while the patient ingested gluten. After gluten withdrawal, the intestinal surface would have to revert to its normal architecture of "hills and valleys". If a patient fulfilled these established criteria, his condition would then be given the name 'gluten-induced enteropathy cocliac disease". Thus, only a small number of persons exhibiting the clinical symptoms of malabsorption including diarrhoea, bloated belly, and failure to thrive could now be classified as coeliacs. The others, an even larger group, suffering with the same symptoms (but who did not pass the required test using the intestinal biopsy criteria) would be diagnosed as suffering from diarrhoea from an unknown cause, steatoffhoea (fatty stools), malabsorption, sprue, etc. Therefore, if a physician applied the strict definition for diagnosing coeliac disease, the number of "true" coeliacs would remain very small while there would remain a large group of patients with assorted diagnoses or no diagnosis of any kind [7]. In a recent review of coeliac disease, the gastroenterologist writing the article referred to this method of diagnosis as "the current gold standard for diagnosis" [26].

However, this method of diagnosis has been seriously questioned by a number of specialists. The flattened or blunted intestinal surface has been reported in innumerable disease states: infectious hepatitis, ulcerative colitis, parasitic infections of the intestine including various types of worms and single-cell parasites, kwashiorkor [21], soy protein intolerance, intolerance to cow's milk protein, intractable diarrhoea of infancy, Crohn's disease [22] and bacterial overgrowth of the small intestine [23]. Just about all conditions associated with diarrhoea seem to result in the same appearance of the small intestine as is seen in the so-called "true coeliac" [24, 25].

Exceptions

And in spite of increasing numbers of sophisticated tests developed to confirm the diagnosis of coeliac disease, including antibody tests, genetic testing involving HLA (histocompatibility antigens) markers, and twin studies, there appear to be more exceptions to the rule than those who follow the rule. The reality is that thousands of patients are suffering and have never been given a diagnosis other than to see a psychiatrist, and thousands of patients are following gluten-free diets and are getting minimal relief, if any. The following is part of an unsolicited letter to the author, and her story is unfortunately only too common: After eight years of mysterious symptoms, dozens of doctors, gruelling and often humiliating tests and general misery, no-one could decide what was wrong with me. I discovered that because my two sisters and my daughter had been diagnosed as celiacs that I too should go on the gluten-free diet. Unfortunately for both my daughter, another sister and I, the gluten free diet did not work. Some symptoms were arrested but none of us were thriving and we just weren't absorbing food. We eventually found the Specific Carbohydrate Diet™ and it has been a godsend. I have never been healthier. My daughter, once a sickly (often whiney), withdrawn child with thin hair and dark circles under her eyes is outgoing, rosy-cheeked and happy. Everyone has noticed her thick, shiny hair. In fact she ran a marathon this year and placed 15th out of 79 children. Last year she ran the same race (before the diet) and placed 53rd, arrived weepy and slept all the way home in the car. [27]

The Specific Carbohydrate Diet™ has been shown to completely cure most cases of coeliac disease if followed for at least one year. It is truly a gluten-free diet, eliminating all grains which contain gluten or gluten-like proteins while also recognising the limitations of the injured intestinal surface. For those people who are not satisfied with their progress on the gluten-free diet, the specific carbohydrate diet offers them the opportunity to become healthy. In the concluding words of the writer of the above letter: I have been on the specific carbohydrate diet for less than a year and still have a way to go but my life has changed drastically in this short time. I have more energy, virtually no pain anywhere (before, my list of symptoms was endless) and no longer spend half my life in the bathroom where my life was literally going down the drain. I was underweight, had dry pale skin, dull looking eyes, suffered from hair loss and was generally miserable. Now I am actively pursuing my art interest - something I always had inside me, but didn't have the energy or drive to tackle.

Elaine Gottschall has spent four years at the University of Western Ontario researching the effects of various sugars on the digestive tract at cellular level, and one year researching the changes that occur in the bowel wall in inflammatory bowel disease. The results of her work are published in the journal Acta Anatomica 21:178
(22).The details of the specific carbohydrate diet can be found in her book Breaking the Vicious Cycle: Intestinal Health through Diet available from SPNT Books, P.O.Box 47, Heathfield East Sussex TN21 8ZX at Pound Sterling 13.95 including P&P. Elaine Gottschall will be speaking at SPNT's annual conference on 8th March 1997 in London.

References

1. Crichton M: A case of need, p 84. Penguin Books, New York, 1968.
2. Aretaeus the Cappadocian: On the causes and symptoms of chronic disease. The Sydenham Society, London, 1856.
3. Gull W: Fatty stools from disease of the mesenteric glands. Guy's Hospital Report 1:369, 1853.
4. Gee S: On the coeliac affection. St Bartholomew's Hospital Report 4:17,1888.
5. Herter C: On infantilism from chronic intestinal infection. MacMillan, New York, 1908.
6. Newland J: Prolonged intolerance to carbohydrates. Transactions of American Pediatric Society 44:11, 1921.
7. Golden Jubilee World Tribute to Dr Sidney V Haas. The Storv of Dr Sidney V Haas. New York Academy of Medicine, New York, 1949.
8. Haas SV and Haas MP: Management of celiac disease, p x. J B Lippincott Company, Philadelphia, 1951.
9. Editorial. New York Times p 28, col 2, April 5th 1949.
10.Physicians Honor Pediatric Pioneer: New York Times p 34, col 2, 1
11.Haas SV and Haas MP: Management of celiac disease. J B Lippincott Company, Philadelphia, 1949.
12. Anderson CM, French JM et al: Coeliac disease: gastrointestinal studies and the effect of dietary wheat flour. Lancet:836-842, 1952.
13. Congdon P, Mason MK et a[: Small bowel mucosa in asymptomatic children with celiac disease. Am J Dis Child 135:118-122,1981.
14. Rubin CE, Brandborg LL et al: Studies of celiac sprue. 111. The effect of repeated wheat instillation into the proximal ileum of patients on a gluten free diet. Gastroenteroigy 43:621-641, 1962.
15. Bleumink E: Allergens and toxic protein in food. In Eds Hekkens WTJMand Pe6a AS: Coeliac Disease. Stenfert Kroese, Leiden, 1974.
16. Weiser MM: An alternative mechanism for gluten toxicity in coeliac disease. Lancet 1:567-569,1976.
17. Baker PG, Read AE: Oats and barley toxicity in celiac patients. Postgrad Med J 52:264-268,1976.
18. Strunk RC, Pinnas JL et al: Rice hypersensitivity associated with serum complement depression. Clin Allergy 8:51-58,1978.
19. Vitoria JC, Camarero C et al: Enteropathy related to fish, ric6 and chicken. Arch Dis Child 57:44-48, 1982.
20. Cluysenaer OJJ and van Tongeren HMM: Malabsorption in coellac sprue. Martinus Nijoff Medical Division, Hague, 1977.
21. Creamer B: Coeliac thoughts. Gut 7:569-571, 1966.
22. Poley JR: Ultrastructural topography of small bowel mucosa in chronic diarrhea in infants and children: Investigations with the scanning electron microscope. In Ed Lebenthal E: Chronic diarrhea in children. Nestit, Vevey/Raven Press, New York, 1984.
23. King CE and Toskes PP: Small intestine bacterial overgrowth. Gastroenterology 76:1035-1055, 1979.
24. Araya M and Walker-Smith JA: Specificity of ultrastructural changes of small intestinal epithelium in early childhood. Arch Dis Child 28:844855,1975.
25. Brunser 0 and Araya M: Damage and repair of small intestinal mucosa in acute and chronic diarrhea. In Ed Lebenthal E: Chronic diarrhea in children. Nestlt, Vevey/Raven Press, New York, 1984.
26. Kagnoff MF: Celiac disease. In Eds Yamada T et al: Texbook of gastroenterology 2:1644. Lippincott Company, Philadelphia, 1995.
27. Personal correspondence from Jennifer Stenberg of RA1, Holstein, Ontario, Canada NOG 2AO, to the author, 6th November 1996.

© Elaine Gottschall.
Originally printed in Nutritional Therapy
Today, Vol 7, No 1, 1997, page 8-11


 
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I'm following the "specific carbohydrate diet" book for one year and I have regained my health. I'd been struggling with colitis and the side effects from drugs for years. I'm getting off all the drugs with the help of this diet. Thank You Ms.Gottshall!
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