Re: Now - The cure for celiac -scd/carol

July 26, 2006

You might find this interesting reading. :-) Oh.. and meant to clarify the damp paper towel with the lettuce. It gets damp from the moisture, you don't want to make it damp as too much moisture is what causes the rot. Whatever happened to the cure for coeliac disease? Until 1952, the most prominent experts in coeliac disease - a wastingcondition associated with the severe malabsorption of food - agreed that it was caused by carbohydrate intolerance, the inability to digestcertain types of carbohydrate. A diet avoiding these carbohydrates wasfound to treat the condition effectively. Then an article in the Lancetstarted the current fashion that coeliacs are merely allergic to gluten.The success of a

gluten-free diet, however, required the diagnosis ofcoeliac disease to be thenceforth restricted only to those patients whobenefited from such a diet. Author and researcher Elaine Gottschallexplains that this change has left thousands of people with severesymptoms which are going undiagnosed and untreated. By Elaine GottschallNutritional 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.( Crichton) [1]. Coeliac disease appears to have always existed. Because its numeroussymptoms 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 earlyyears of the Roman Empire by the physicial Aretaeus, who refers to" coeliac disease" as a chronic diarrhoea condition consisting ofundigested food, lasting an extended period, and a debilitation of thewhole body. [2] Arataeus described the diarrhoea as being light incolour, offensive in odour, and accompanied by flatulence. Additionallythe 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 thesymptoms 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 Gee laid the foundation for notonly describing the condition, but also establishing criteria fordiagnosis. Additionally, he established guidelines for successfullytreating the condition with a dietary approach. In his classic report "Onthe Coeliac Affection", he wrote There is a kind of chronic indigestionwhich is met with in persons of all ages, yet is especially apt to affectchildren 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 strikingretardation in growth of the skeleton, the muscles and the variousorgans and associated with a chronic intestinal infectioncharacterised by the overgrowth and persistence of bacterial florabelonging normally to the nursling period. (4) The chief manifestations of this intestinal infantilism are arrest inthe development of the body but maintenance of good mental powers and a fair development of the brain; marked abdominal

distention; aslight or moderate or considerable degree of simple anaemia; therapid onset of physical and mental fatigue; irregularities ofintestinal 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 tomalabsorption 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 verycommon 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 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 attacksof diarrhea they are large, light gray in color, often frothy, andusually very foul.. Growth suffers in proportion to the length of timethat the symptoms persist, and many children are greatly below theaverage in height. From clinical experience, it has been found that ofall 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 theelimination of carbohydrates, the stage where carbohydrates are addedis the most difficult. He explained that although the

initial phase maybe time consuming, "these patients well repay the efforts expended onthem. They do not remain semi-invalids, many become vigorous andstrong, some even with no trace of dietary idiosyncrasies... Halfwaymeasures are quite unavailing and cause only loss of time.' Otherdoctors 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 aftercarbohydrate source, in the dietary treatment for coeliac. He soondiscovered that coeliacs could tolerate this carbohydrate, and, morethan that, the banana could be fed in large quantities with beneficialeffects. He further experimented with carbohydrate containing fruitsand some vegetables and found that they, too, could be tolerated andthe coeliac could regain health on a far more varied diet than justprotein and fat. During the next few years, Dr Haas treated over 600 cases of coeliacdisease with his Specific Carbohydrate Diet™, maintaining his patientson it for at least 12 months, and found that the prognosis of coeliacdisease was excellent. "There is complete recovery with no relapses,no deaths, no crisis, no pulmonary involvement and no stunting ofgrowth." [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 greatpediatricians, 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, publishedThe 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 Crichton has written, "the battle" continued. Within oneyear after the publication of the Drs Haas's book, a singular reportappeared in the English medical journal Lancet [12]. A group of sixfaculty members of the Departments of Pharmacology, Paediatrics andChild Health of the University of Birmingham, after testing only 10children,

decided that it was not the starch (carbohydrate) in thegrains that so many had reported as being deleterious, but it was theprotein 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; coeliacdisease. The changes were very similar to those in adult idiopathicsteatorrhoea. The removal of wheat flour from the diet resulted in rapidimprovement, both clinically and biochemically. Deterioration followedthe reintroduction into the diet of wheat flour or wheat gluten, butwheat starch had no harmful effect. Did you know? If you thought thatsweetcorn 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 theculprit but that it was the protein gluten and that when the gluten was'washed out" of the flour, the remaining starch was perfectly fme. Andovernight, the hypothesis gained ready acceptance. No need now fordoctors to worry about adherence to a diet which eliminated specificcarbohydrates 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 generalwell-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 coeliacsufferers [17].additional reports implicated rice as well as other grainsas 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 anumber of specialists. The flattened or blunted intestinal surface hasbeen reported in innumerable disease states: infectious hepatitis,ulcerative colitis, parasitic infections of the intestine includingvarious types of worms and single-cell parasites, kwashiorkor [21], soyprotein intolerance, intolerance to cow's milk protein, intractablediarrhoea of

infancy, Crohn's disease [22] and bacterial overgrowth ofthe small intestine [23]. Just about all conditions associated withdiarrhoea 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 toconfirm 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 aresuffering and have never been given a diagnosis other than to see apsychiatrist, and thousands of patients are following gluten-free dietsand are getting minimal relief, if any. The following is part of anunsolicited letter to the author, and her story is unfortunately only toocommon: After eight years

of mysterious symptoms, dozens of doctors,gruelling and often humiliating tests and general misery, no-one coulddecide 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 orgluten-like proteins while also recognising the limitations of theinjured intestinal surface. For those people who are not satisfied withtheir progress on the gluten-free diet, the specific carbohydrate dietoffers 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 WesternOntario researching the effects of various sugars on the digestive tractat cellular level, and one year researching the changes that occur in thebowel wall in inflammatory bowel disease. The results of her work arepublished in the journal Acta Anatomica21:178(22).The details of the specific carbohydrate diet can be found in herbook Breaking the Vicious Cycle: Intestinal Health through Dietavailable from SPNT Books,P.O.Box 47, Heathfield East Sussex TN21 8ZX at Pound Sterling 13.95including P & P. Elaine Gottschall will be speaking at SPNT's annualconference 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 chronicdisease. The Sydenham Society, London, 1856.3. Gull W: Fatty stools from disease of the mesenteric glands. Guy'sHospital Report 1:369, 1853.4. Gee S: On the coeliac affection. St Bartholomew's Hospital Report4:17,1888.5. Herter C: On infantilism from chronic intestinal infection.MacMillan, New York, 1908.6. Newland J: Prolonged intolerance to carbohydrates. Transactions ofAmerican Pediatric Society 44:11, 1921.7. Golden Jubilee World Tribute to Dr Sidney V Haas. The Storv of DrSidney V Haas. New York Academy of Medicine, New York, 1949.8. Haas SV and Haas MP: Management of celiac disease, p x. J BLippincott 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, 111.Haas SV and Haas MP: Management of celiac disease. J B LippincottCompany, Philadelphia, 1949.12.

CM, French JM et al: Coeliac disease: gastrointestinalstudies and the effect of dietary wheat flour. Lancet:836-842, 1952.13. Congdon P, Mason MK et a[: Small bowel mucosa in asymptomaticchildren with celiac disease. Am J Dis Child 135:118-122,1981.14. Rubin CE, Brandborg LL et al: Studies of celiac sprue. 111. Theeffect of repeated wheat instillation into the proximal ileum ofpatients 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 coeliacdisease. 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 withserum complement depression. Clin Allergy 8:51-58,1978.19.Vitoria JC, Camarero C et al:

Enteropathy related to fish, ric6 andchicken. Arch Dis Child 57:44-48, 1982.20.Cluysenaer OJJ and van Tongeren HMM: Malabsorption in coellac sprue. us 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 - JA: Specificity of ultrastructural changesof small intestinal epithelium in early childhood. Arch Dis Child28:844855,1975.25.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 ofgastroenterology 2:1644. Lippincott Company, Philadelphia, 1995.27.Personal correspondence from Stenberg of RA1, Holstein,Ontario, Canada NOG 2AO, to the author, 6th November 1996. © Elaine Gottschall. Originally printed in Nutritional TherapyToday, Vol 7, No 1, 1997, page 8-11 Web site design by Iain MacMasterPlease report any errors or comments to Iain MacMaster Information published on Breaking the Vicious Cycle Web site is

intended to support the book Breaking the vicious cycle by Elaine Gottschall and is for information purposes only. It is not the intention of this site to diagnose, prescribe, or replace medical care. Your doctor or nutrition expert should be consulted before undertaking a radical change of diet.© 2005 Breaking the Vicious Cycle rdavis900@... wrote: Once you have celiac disease you have it. There is no cure except a totally GF diet. Once you are on a Gf diet your symptoms disappear but you can never eat gluten again. Interesting article, thank you for sharing. This is all so interesting. I often wondered if my 7 year old has it. Her moods are wild. Waiting for her blood results. everyone else's came back negative today but no answers for her yet. Carol in IL Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma, subglottal stenosis, chronic constipation ( cured now ) and DS. My problem is not how I look. It's how you see me.

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

July 27, 2006

Carol this is indeed very interesting reading , can I forward it to my

sibilings ( who are ceoliac?/) . Its likley they will want to forward it on too

..

I am very tired of this ceoliac business!! Downs Cp , dyspraxia are fine can

handle all those but ceoliac is a pain in the neck. Time to kick its butt !!!

Once and for all. Thanks for all your tips!! I intend to be at home to cook

proper meals . Sam always has a cooked from scratch home cooked meal. He is not

good at chewing ( but is geting there ) so not so sure about the raw veggies .

Will keep on trying him though as he never ceases to amazing me and STILL has

a new skill almost every day at 6 years old !!!

Thanks again , SCD is looking to be the answer to my prayers!! I dont ahve the

availability of foods you have over there ( would love to get my hands on a

spagetti squash ) and I think zukini is a courgette over here ;-) I would love

the lasagne recipe !!! Sounds like something we would all love !!! Anything in

particular she does other than subsitute the pasta ???

HUGE thank you

Re: Now - The cure for celiac -scd/carol

You might find this interesting reading. :-)

Oh.. and meant to clarify the damp paper towel with the lettuce. It gets damp

from the moisture, you don't want to make it damp as too much moisture is what

causes the rot.

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.

( 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 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 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 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. 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. us

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 - 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 Stenberg of RA1, Holstein,

Ontario, Canada NOG 2AO, to the author, 6th November 1996.

Originally printed in Nutritional Therapy

Today, Vol 7, No 1, 1997, page 8-11

Web site design by Iain MacMaster

Please report any errors or comments to Iain MacMaster

Information published on Breaking the Vicious Cycle Web site is intended to

support the book Breaking the vicious cycle by Elaine Gottschall and is for

information purposes only. It is not the intention of this site to diagnose,

prescribe, or replace medical care. Your doctor or nutrition expert should be

consulted before undertaking a radical change of diet.

rdavis900@... wrote:

Once you have celiac disease you have it. There is no

cure except a totally GF diet. Once you are on a Gf diet your symptoms

disappear but you can never eat gluten again. Interesting article, thank you

for sharing. This is all so interesting. I often wondered if my 7 year old has

it. Her moods are wild. Waiting for her blood results. everyone else's came

back negative today but no answers for her yet.

Carol in IL

Mom to seven including , 6 with TOF, AVcanal, GERD, LS, Asthma,

subglottal stenosis, chronic constipation ( cured now ) and DS.

My problem is not how I look. It's how you see me.

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

You might find this interesting reading. :-) Oh.. and meant to clarify the damp paper towel with the lettuce. It gets damp from the moisture, you don't want to make it damp as too much moisture is what causes the rot. Whatever happened to the cure for coeliac disease? Until 1952, the most prominent experts in coeliac disease - a wastingcondition associated with the severe malabsorption of food - agreed that it was caused by carbohydrate intolerance, the inability to digestcertain types of carbohydrate. A diet avoiding these carbohydrates wasfound to treat the condition effectively. Then an article in the Lancetstarted the current fashion that coeliacs are merely allergic to gluten.The success of