Was JFK the Victim of an Undiagnosed Disease Common to the Irish?

tags: JFK

Dr. Green is Professor of Clinical Medicine, Director of the Celiac Disease Center at Columbia University College of Physicians and Surgeons.

HNN: The JFK Medical Files Media Reaction to Robert Dallek's Disclosures Rick Shenkman, Are the Medical Disclosures Intended to Manipulate Public Opinion? Laurence Leamer, A Kennedy Biographer Assesses the Dallek Disclosures Barron Lerner, Kennedy: Disease, History and Secrecy Interview with Bob Dallek How Many Presidents Have Lied About Their Medical History?

New revelations that have appeared in the New York Times and the Atlantic Monthly, about John F. Kennedy's health have raised questions about his physical condition during his presidency. Robert Dallek, in the December Atlantic Monthly, described in "The Medical Ordeals of JFK" long standing medical problems that started in childhood. In Kennedy's adolescence, gastrointestinal symptoms, weight and growth problems as well as fatigue were described. Later in life, he suffered from abdominal pain, diarrhea, weight loss, osteoporosis, migraine and Addison's disease. Chronic back problems, due to osteoporosis resulted in several operations and required medications for chronic pain. He was extensively evaluated in major medical centers including the Mayo Clinic and hospitals in Boston, New Haven and New York. Among the multiple diagnoses were ulcers, colitis, spastic colitis, irritable bowel syndrome, and food allergies. His medications included corticosteroids, antispasmotics, Metamucil and Lomotil. However it is not clear that his physicians obtained a definitive diagnosis.



Review of this medical history raises the possibility that JFK had celiac disease. Celiac disease is caused by ingestion of gluten, which is the main protein component of wheat and related cereals, rye and barley. The small intestine develops villous atrophy that results in difficulties in the absorption of nutrients. Diarrhea and abdominal pain are common symptoms. Elimination of gluten from the diet results in resolution of the inflammatory condition in the intestine and the associated symptoms and prevention of the complications of the disease. A life-long gluten free diet is then required. People with celiac disease, providing they adhere to the diet have normal longevity.



Celiac disease can present at any age. In infancy and childhood it may cause chronic diarrhea, abdominal pain, and growth, behavioral and development problems. In older individuals the presentation of celiac disease is frequently due to the development of complications of the disease. These include anemia, osteoporosis, skin rashes or neurologic problems. The neurologic problems include neuropathy, epilepsy, ataxia (balance disorders) and migraine. While the disease is more common in females, men are affected as well. Osteoporosis is common in patients with celiac disease, men often are more severely affected than women. Gastrointestinal symptoms in celiac disease persist for many years prior to diagnosis and are often attributed to an irritable bowel syndrome or spastic colitis. Patients typically see many physicians prior to the diagnosis of celiac disease.



Autoimmune disorders occur more frequently in patients with celiac disease than the general population by a factor of ten. Frequently the autoimmune disorder assumes greater clinical significance than the celiac disease and as a result is diagnosed first. The associated autoimmune disorders include thyroid dysfunction, psoriasis, dermatitis herpetiformis (an intensely itchy skin rash), Sjogren's syndrome, and Addison's disease. Relatives of patients with celiac disease have a greater risk, not only of celiac disease, but also of other autoimmune diseases.

THE IRISH CONNECTION Celiac disease was formerly considered a rare disease of childhood. It is now recognized as being very common in those of European descent, one of the most common genetically determined conditions physicians will encounter. Recent studies have demonstrated the country with the greatest prevalence to be Ireland. In Belfast one in one hundred and twenty two have the illness.



The prominent familial association of the disease indicated by the occurrence in one of ten first degree relatives and in 80 percent of identical twins points to a genetic component of the disease. However the actual genes responsible for the disease have not been discovered though there are many groups working on the problem. It is known that there is a strong association with specific HLA genes that are required for the disease to occur, but are themselves not sufficient for the disease to be manifested. Kennedy's Irish heritage, long duration of gastrointestinal complaints (since childhood), diagnosis of irritable bowel syndrome and migraine, presence of severe osteoporosis, and the development of Addison's disease all lead to a presumptive diagnosis of celiac disease. Kennedy was given steroids for his problems. Steroid use is associated with the development of osteoporosis and Addison's disease. However steroids were initially used in clinical practice in the 1930s and 1940s for many indications, not considered appropriate now. In the case of Kennedy, if he did in fact have celiac disease, the steroids would have suppressed the inflammation in the intestine and reduced his symptoms, making diagnosis of celiac disease less likely to be established. The occurrence of Addison's disease in his sister, however, argues for a familial cause of his Addison's disease, rather than an iatrogenic one.



Could celiac disease have been diagnosed in Kennedy during his lifetime? Possibly. The disease was first recognized in 1887 as well as its treatment with an elimination diet. It was recognized to occur at all ages. However, it was not until the 1950s that the shortage of bread during the Second World War and its subsequent reintroduction in Holland prompted recognition of the role of wheat as a cause of this malabsorption syndrome. While it was in the 1970s that physicians became aware of the more subtle presentations of the disease. The diagnosis of celiac disease initially requires consideration that it may be present in an individual patient, even now many physicians do not consider the diagnosis.



It would however be possible to diagnose celiac disease in JFK now, if biopsies taken during his life, or autopsy material of the small intestine had been archived and was now made available. Frozen blood samples could also provide diagnostic material for there are serologic tests now available that are sensitive and specific for the condition..



A diagnosis of celiac disease, if it had been made could have been treated by diet alone. This would have prevented all the manifestations of the disease and its complications. Because of the strong genetic component of celiac disease, Kennedy's family may well be interested in obtaining the diagnosis as well.



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Ursula K Sindlinger - 3/14/2008 I would have never made the connection to the money that can be made in healthcare when a person has undiagnosed celiac disease. And yet I should have ...



In the past several years, I was sent from one specialist to another, all of various disorders I now know are related to celiac disease and no one ever got to the root of it until I had tests done, colonoscopy and the upper one and it was discovered.



Man, healthcare in America is abysmal.

Karen - 1/29/2008 Someone should call Michael Moore too!

Dr. Green is a hero and an inspiration!

Some of us notice the potential Celiac every day, everywhere we go... In the US, statistically there are 33 undiagnosed celiacs for each one diagnosed.



And by the way, the diagnosis for each person is averaging over 10 years per! Cha-ching, Folks! It is driving up the cost of care and doctor waiting room time and insurance premiums, to say the least!We should all be screaming for universal screening!

Jeff Kelly - 1/16/2005 What causes the seizures is an imbalance of vitamins and minerals, particularly b-complex vitamins and magnesium and calcium and vitamin D also. These deficiencies all affect the central nervous system. In advanced stages, calcification can actually occur in the skull, meaning, the bone becomes fused together in abnormal fashion.

Clearing up the malabsorption by a strict gluten free diet should solve the issue. The importance of adhering to that cannot be overstressed. If for some reason the malabsorption continues despite the strict diet, then the only mode which is successful would be parental nutrition, intravenous perhaps, to bypass the GI tract and get those nutrients into the bloodstream and the nervous system which requires them.

Jeff Kelly - 12/16/2004 I ran across recently some material of interest with respect to the JFK-Celiac connection. It is an exchange Pathologist Michael Baden had with a Radiologist present at JFK's autopsy. Baden asks of him a question, which he does not answer, thusly:"Did you notice the calcification of his bones especially in the extremities and did you think that was unusual for a man his age?"(The radiologist for his part countered he was present solely for determining whether there were still any missiles in JFK's body). Another indication of Celiac disease, although certainly not definitive to the skeptical, yet another in the long list of affirmative signs thereof...I do not have a URL to relate however I believe this was either the result of the ARRB investigation or perhaps the earlier House Assassinations Cmte. work in the 1970's.

Sayer - 9/2/2003 Somewhere it is said that when the high gluten wheat berry was introduced into Ireland via English colonization a significant portion of the population died after experiencing severe allergic reaction to gluten. Does anyone out there have any tips as to where I can find out more. Any books, or websites? Thanks. Sayer.

Greg - 6/12/2003 I was diagnosed about ten years ago with celiac sprue. I never strictly folllowed the gluten free diet. All seemed ok until about 5 years ago........I had a seizure. The doctors found nothing. I had another real minor seizure two years ago and then last month another grand mal seizure. All of the doctors test have proven negative to this point. I have been strictly following the gluten free diet. What should I tell my doctors and will a strict diet stop the seizures? What actually causes the seizures to occur? PLEASE HELP

Cara - 3/10/2003 Thanks Stephanie. Guess what? I only saw this response because it came up under a google search when entering seizures and gluten. But..coincidentally, I did the genetic testing through Enterolab just three weeks ago for predisposition to gluten sensitivity or celiac disease..and found both my daughter and I have double copies of the HLA DQ1 marker. This is not associated with celiac disease, but it is associated with gluten sensitivity.



Dr. Hadjivassiliou has noted the DQ1 marker in 20% of his gluten sensitive neurological patients, and the rest have the celiac associated markers DQ2 or DQ8. Any of these three markers, in combination with positive antigliadin antibodies and neurological symptoms are considered diagnostic in his opinion...and he recommends a gluten free diet.



I saw Dr. Fine in lecture a year ago, and based on my daughters symptoms and positive antigliadins he suggested a gluten free diet.



My daughter, unfortunately, believes her GI who says...no problem..keep on eating gluten because you had a negative biopsy.



I'm glad I did the genetic testing because it gives me more information to help convince my daughter that her GI didn't give her the best advice. I recommend the testing for anyone whose diagnostics are in the 'grey zone'. I'm glad you recommended it here.



Cara

Sally - 2/20/2003 http://www.csaceliacs.org/neurocomp.html



This is an article from the Journal of Gastroenterology that says neurological symptoms can occur in Celiacs in the absence of gastrointestinal symptoms and with a negative biopsy. It also says that sometimes neurological symptoms precede other symptoms of Celiac. The anti-gliadin antibodies seem to be the key.



I was having neurological symptoms (leg jerks and restless legs) before my doctor diagnosed Celiac and it seemed like a wonderful bonus (at that time) that those symptoms cleared up along with the g.i. symptoms. Now I can see why.



Good luck!

Stephanie Kennedy - 2/5/2003 Have you tried Enterolab. http://www.enterolab.com. Dr. Kenneth Fine runs a lab that specializes in testing for Celiac/gluten sensitivity through a stool test. You obtain the test yourself and mail in the stool sample. Dr. Fine then sends you your results via e-mail. I tested negative through a blood test. My son tested borderline through a blood test. Dr. Fine's test shows that we are both positive and that we have malabsorption issues. We have improved greatly on the gluten-free diet, which to me is the best test of all. good luck.

Stephanie K.

Jeff Kelly - 1/17/2003 Listen, to discover this "evidence" would be great;however, for the medical profession to sit on this medical revelation of our time on the pretext of "holding out for evidence" is a waste of time and more evidence the medical profession is a waste of money and space and in terms of quality, more worthy of existing in a third world country than in the United States. You doctors are all brainwashed;what we need in this country is a complete overhaul of medical curriculum to at least approximate the diseases of our day and culture. The ability of an American Doctor to diagnose Celiac Disease in timely fashion--if at all--is approximately nil to nonexistant.

Furthermore, this story illustrates the complete and utter moral disaster of the Catholic Church in their perennial CULTURE OF DENIAL(the same organization that put me through a Psych Unit at age 11 for five weeks out of their extreme control issues and for which I shall forevermore have no legal recourse). Please God, spare us from the likes of the Cardinals and the Premise of Infallibility--so pertinent to the psychology behind medical practice. New York City, Dr. Green, is a place where the Catholic Church has ruled for the last couple centuries and today I imagine the Presbyterians don't have quite as much influence on the mindset of medicine at Columbia-Presbyterian than the Catholic Church does. My final comment:Dr. Robert Mendelssohn, from that other American City the Catholic church owned called Chicago, was fond of analogizing the culture of medicine with the structure of the Catholic Church:The doctors, he said, were the Priests, the Hospitals were the Churches, and the AMA was the Vatican! I couldn't agree more, and to prove it I belong to the club named after him here in Kingston!!! Ahahahahhahahaaaa!!

Jeff Kelly - 1/13/2003 Doctors are going to disagree with me on this, but my encouragement is simply this:despite the fact that it may be next to or defintitely impossible to now prove JFK had Celiac Disease according to pathological examinations,Celiacs are content to accept the information presented as sufficient proof and beyond the scientific question, we should all be able to agree that this is not a necessary prerequisite in order to move forward with VIGOR in pursuing better treatment for Celiacs via this apparent connection with a US President.

Jeff Kelly - 12/25/2002 AMEN, AMEN, and..........AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA-MEN!!!!

Jeff Kelly - 12/25/2002 As a Celiac and an upstate New Yorker 90 miles from Columbia-Presbyterian hospital, it makes me proud of that institution despite the neighborhood within which it is located and proud to boot of what I am known to refer to as "The Big Crapple." LOL

Jeff Kelly - 12/25/2002 Interestinnnng...yes, something to think about especially since women are more prone to autoimmune disease than men, and certainly a more medically valid possibility in my mind than the pseudoscientific premise of the book "Eat Right For Your Blood Type".

Jeff Kelly - 12/25/2002 As a Celiac who just reached this accurate diagnosis after over 35 years of suffering with NO help from the medical community on this, I wish to COMMEND wholeheartedly Dr. Green for his insightful comments which paralleled mine upon reading Kennedy's medical history. I had JFK's symptom profile to a "T". Since going gluten free, I have recovered to the point of near humanity at age 46. FINALLY.

As a note, Dr. Fine's ENTEROLAB in Dallas, Texas(obviously the site of JFK's murder)is doing wonderful work in this field and he and I have great rapport going via email. He suggested a JFK memorial in Dallas contain reference to Celiac and insists on contacting the Kennedy family for "permission" to do things even on the most simple plane in this JFK-Celiac connection and regard. My feeling is that the Kennedy family was content to keep such important information from the public for thirty-nine years after JFK's death. These folks aren't obviously inclined to go along with such ideas because they obviously have little or no conscience with regard to how this information could have helped those suffering with the same ailment(s) by a timely release of this information. I will have comments in the JFK-Celiac-personal family vein posted by the end of December(so Dr. Fine assures me) on the website finerhealth.com I direct all interested parties to that cyber-location to read further comments of possible interest on this topic.

Cara C, - 12/20/2002 Mary,



Thank you for your suggestion. I actually did get a second opinion from Dr. Fasano, and it was also negative. At least I am confident that the samples taken show no evidence of intestinal damage. However, I am aware that some suggest as many as 15 samples be taken, and only three were. Also, samples should be taken from the jejunem...and I'm not sure they were.



My daughter did show evidence of lymphocytic gastritis on biopsy, a condition which is associated with both celiac disease and h. pylori (h. pylori having been ruled out in pathology), but of itself is not diagnostic. Add to that an extremely strong family history of autoimmune thyroid disease (80% of two generations on my dad's side- myself and two siblings, father included). And a younger sister who has improved on the diet...two years of chronic diarrhea and neurological symptoms resolved.



Yet..I can't find a doctor who will "prescribe" a gluten free diet for my daughter who has positive antigliadin IgG antibodies, history of seizure disorder, and a long list of celiac symptoms (muscle spasms, joint pain and inflammation, dental enamel defect, seizures, more), and other supportive lab work (high alkaline phosphatase, low potassium, high ck). Our GI dismisses the notion of gluten sensitivity being meaningful outside of biopsy evidence of celiac disease, and the neurologist and pediatrician don't know anything about it, period.



My teen daughter prefers to think her doctors know more than her mother.



Sorry to vent that all (certainly outside the scope of Kennedy), but it is a very frustrating position to be in. She continues to consume gluten based on her doctors recommendation. This thing called gluten sensitivity is even more elusive than celiac disease.



jcc







Therese Spruhan - 12/18/2002 I have always wondered whether JKF's wife Jackie had coeliac disease as she was always rather thin and died of lymphoma(in the bowel or stomach area) which is a long-term complication of undiagnosed coeliac disease. I have coeliac disease which was diagnosed finally about six years ago after nearly three years of illness. I also strongly suspect that my mother had coeliac disease. She, however, was never tested as she died of lymphoma of the lining of the stomach 10 years ago.

Something to think about?

Ann Rudolph - 12/13/2002 Your article was right on the mark. CD was my first thought when

I read the "New York Times" article. I have shared the article with our medical advisor and many friends. As a former patient of

yours I want to congratulate you on your new Celiac Disease Center and to thank you for your great contribution to the Celiac community.



Peter Green - 12/8/2002 It would certainly be interesting to to fill in the gaps in respect to medical illnesses in JFK's family tree. If there are truely other family members with celiac disease or a significant number with autoimmune diseases it would provide some more evidence that he had celiac disease. It would also be important for other family members for there is evidence that early diagnosis of celiac disease, in children, can prevent bautoimmune diseases.

Cara Mia Diegoli - 12/6/2002 Dear Dr Green,

I have found out in the last year that I suffer from Celiac disease. My maternal grandmother was related to JFK. My mother, now deceased, suffered from "nervous colitis" but I think she also suffered from celiac disease

Thanks.

M.N. Hopkins - 12/5/2002 "woof,woof"

Bud Wood - 12/2/2002 Of interest is that I found that I had Sjogren's Syndrom which is noted as an autoimmune disease coming from the celiac disease. I was cured of it by a physician who treated it as if it was arthritis, of which it is a type. However, as I was being treated, I gave up wheat coincidentally as part of the O blood type diet (Eat Right for Your Type by Peter D'Adamo). Possibly, that did as much as the treatment - - I'm not sure of what happened, but I'm in pretty good shape, now.

I might suggest that people look at D'Adamo's web site (http://www.dadamo.com) as I am convinced that many of us who have the "O" blood type really need to be much more aware of the ramifications of what we ingest.

Editor - 12/2/2002 Robert Dallek is aware of this article. It was thanks to him that HNN heard about Dr. Green.

Mary Thorpe - 12/2/2002 Dear Cara,



You might want to consider getting a second opinion on the biopsy taken of your oldest daughter. Not all clinicians are adept at recognizing the early stages of celiac disease. Dr. Fasano at UMB could be approached about this, or perhaps Dr. Green. You would need to ask them first, then request the slides from the pathologist who read them.



Mary T.

Peter Green - 11/29/2002 I contacted Robert Dalleck concerning the possible diagnosis of celiac disease in JFK and whether there was autopsy material available for analysis. He got back to me that there was apparently no autopsy specimens available.

Marie Pizzolatto - 11/29/2002 My diabetic son actually has DH, although it's usually much easier to say he is celiac. The rash doesn't look like hives - it's small, extremely itchy pustules that form a scaly patch and doesn't go away with antihistamine treatment. Which then leaves the doctors scratching their heads, while the patients continue to itch! My son was misdiagnosed first with contact dermatitis and then eczema. But it's an interesting idea to wonder how many other historical figures were affected by celiac disease.

Kathryn Kellison - 11/29/2002 oops...I meant of course many doctors misdiagnosed DH as hives.

Kathryn Kellison - 11/29/2002 Dear Dr. Green,

Thank you for your timely article on the possibility JFK had celiac disease. Have you sent this to the Atlantic Monthly, or to Robert Dalleck? I have started a letter to them, but won't send it if you have already approached this possibility. You didn't mention the part of Dalleck's article where JFK was sent to the hospital with severe hives. I know they aren't the same thing, but according to the internet boards, many doctors misdiagnose CD as hives.

Kit Kellison

Andrea Marshall - 11/28/2002 There has also been discussion about the possibility that Kurt Cobain, the lead singer of Nirvana who commited suicide in the early 90's, may have had celiac disease. He suffered from chronic stomach pain and through an attempt at self medicating, developed an addiction to heroine, which only alleviated the pain for a brief period of time. I believe that he may very well have had this disease. I say this because I know of the emotional exhaustion, the hopelessness and helplessness that undiagnosed sprue can cause. I think that your work is wonderful. There are too many people suffering needlessly due to ignorance and its time that the public be educated about this not so uncommon condition.

CC - 11/28/2002 Jane,

Am I right in reading between the lines that the gluten free diet was abandoned in your case? At one time they thought children could "outgrow" celiac disease. You do not. The symptoms may diminish or become silent, but the underlying disease stays. Seizures associated with biopsy proven celiac disease are well documented. What is new is the notion that gluten sensitivity may manifest in neurological disease BEFORE or WITHOUT intestinal celiac disease.



If you truly 'had' celiac disease, you still do. You should be rescreened for it.





Jane M. Curtin - 11/27/2002 I find this theory quite interesting You see as a young child 2-3 I had celiac disease. And then the only

treatment for it was bananas for every meal. And when Iwas 12 had heart surgeryIN 1961. And delveloped epilepsy

shortly after surgery.[my brother also had heart surgery and delveloped muscles spasms after his surgery.

and the drs felt his spasms were caused by the surgery.] So when I delveloped epilepsy it was assumed

that surgery was the cause. Now what makes this interesting is that I have osteo-

porosis and it is thought that the anti convusion med Dilantin@ caused that.

And I have a slight case of I.B.S. And oh yes I'm french, german, and IRISH And I'M mostly irish Both Grandpas were irish

Liz Kramer - 11/27/2002 Very interesting article.



Thanks.



Liz

Cara C. - 11/27/2002 Thank you for your response. I am actually well read on Dr. Hadvimassiliou's material, and some others. I have had trouble finding medical professionals who have heard of this, or who are willing to invest the time into doing the reading. It could take ten or twenty years for the research to fully play out on this, while continued gluten ingestion potentially puts my girls at risk of permament brain damage.



May I ask you, most seriously and most respectively, would you continue to feed your children gluten under these circumstances?





Marie Pizzolatto - 11/27/2002 Thank you, thank you, thank you, Dr. Green. My oldest child was diagnosed with hypo-thyroidism at age 8, my fourth with diabetes at 11 mos and then both diagnosed with celiac within a year. Two years later my third showed celiac symptoms at age 7 and 6 months after that developed ITP. The interesting question is which came first. I am hoping that by keeping them and my other three children on the gluten free diet, we can prevent additional occurences of auto-immune diseases. I believe that everyone should be screened for celiac disease, especially school-aged children. Test them when they are vaccinated!

Peter Green - 11/27/2002 There is some evidence that neurologic symptoms may occur individuals who have pos antigliadin antibodies and normal biopsies and then there is improvement on a gluten free diet. This concept has been popularized by Dr Hadjivassiliou, from Sheffield, UK. This is, scientifically, an area with little documentation. There is active research into these problems.

Cara C. - 11/27/2002 Dear Dr. Green,



You mentioned in your article that celiac disease can cause neurological problems including seizures.



My daughters have gluten sensitivity with "only" positive antigliadin IgG, but both have had neurological problems. One had many vague symptoms of celiac throughout her life, and presented with seizures (clean MRI) four years ago at age 12. My six year old had two years of chronic diarrhea and symptoms of staggering, eye lid drooping, leg drag, and limp body fatigue. I put the six year old on a gf diet (no biopsy) and all symptoms resolved within months. I pursued a biopsy on the oldest and it fell short of diagnostic criteria of villous atrophy, but did show lymphocytic infilitration of the stomach. She is refusing a trial of the gf diet because her doctors have told her it is not necessary, and that her neuro problems are unrelated.



My question to you: Do you feel that gluten sensitivity OUTSIDE of evidence of intestinal celiac disease can cause neurological problems...and should this be treated with a gluten free diet?

B. Anderson - 11/27/2002 Dr. Green, I do agree that celiac could be a possibility. What concerns me, in medicine in general, is the complete absence of discussion regarding achlorhydria in people of Northern European descent. Low or no stomach acid can, after even a couple years, produce such inflammation in the GI tract that the symptoms of celiac and achlorhydria are barely indistinguishable. Have you done any research on achlorhydria? It runs in my family (Norwegian heritage) and often goes hand in hand with many of the autoimmune diseases. My achlorhydria went undiagnosed for years until I finally had "frank" pernicious anemia from it.



What concerns me more than whether or not President Kennedy had celiac is the current over-advertising of antacid medications when most Americans probably need acid, since we lose it as we grow older. This epidemic of taking antacids instead of eating good food with omega-3 fatty acids is reducing people's stomach acid, increasing a lack of digested food, allergies, B-12 and other nutritional deficiencies and inflammation and exposing people to the adverse immunological effects of no acid.



I would like to see you concentrate on how many people are being harmed TODAY than to speculate on how one person was harmed in the past.

Peter Green - 11/26/2002 Delayed gastric emptying is a well documented manifestation of celiac disease that will usually improve on a gluten free diet. The mechanism is unknown. It is unlikely the mechanism is via a neuropathy for the improvement on the diet is relatively rapid

Jeff Kelly - 11/26/2002 This was my belief after reading JFK's medical history. I have been suffering for years and years and finally found I was a Celiac this year. The gluten free diet has been a Godsend. Thank God I found the information I needed on the Internet because despite the telltale labs mentioned I had for years no doctor put it together. And the information about this disease has been abominably hard to find in other venues as well.

Kennedy had Celiac Disease-- there is no question in my mind. I sent that comment to the director of Enterolab in Dallas and he and I have agreed it would be good to connect JFK with Celiac Disease as a way to spur on the research and the awareness. He has even thought about making such a connection at a JFK memorial site there in Dallas and asked me to contact the family with the idea;I have done so. I wouldn't expect the family would be thrilled about this particular idea but some connection made with JFK will help the cause, of this there can be no doubt.

Too bad the family waited so long to allow release of this information;had they not waited so long perhaps we would find a spur in awarness of Celiac much much sooner;but--better late than never!



M. C, Koester - 11/26/2002 I am a celiac and I recently read a biography of Rose Kennedy and she also reported many symptoms of celiac disease but, in fact, after being hospitalized in Boston for severe diarrhea several times figured out that a bland diet of poached chicken and pureed vegetables eliminated these symptoms. So, she put herself on a gluten free diet in her 50's and lived to be 104! I have suspected JFK SR and JR were celiacs for a number of years.

Laura Y. - 11/26/2002 I asked my gastroenterologist, Chief of Gastroenterology, whether peripheral neuropathy could have played a role in causing my slow stomach emptying and gastritis. The symptoms were greatly exacerbated during gluten challenges directed by my gastroenterologist. After the final gluten challenge, I had trouble drinking and eating solid foods, any acidic or alkaline foods, and could only tolerate a few grams of fat. I had severe stomach spasms, bloating, and early satiety. These symptoms have been resolving over a period of months.

We discussed the possibility that nerve irritation could cause the stomach inflammation and lead to slow stomach emptying.

As the stomach symptoms receded, fat tolerance increased, weight increased, and steatorrhea has fully resolved.

He agreed to this possibility. Do you agree and why or why not?

Richard Henry Morgan - 11/26/2002 Wow!! That's interesting. I wonder if a gluten-free diet, in conjunction with other treatment, can halt an auto-immune neuropathy in its tracks. I'm thinking, in particular, of recent NIH trials with HAT therapy, which has shown some promise in auto-immune neuropathies of the eye, and might very well have broader applications. Thanks for the mind candy.

Peter Green - 11/26/2002 I am referring to an autoimmune neuropathy. We have found that celiac disease is a not uncommon cause of peripheral neuropathy (associated with antiganglioside antibodies). The association with autoimmune diseases was formally considered to be a genetic predisposition, ie shared genetic predisposition. Recent evidence is that the celiac disease predisposes to the autoimmune diseases. The older the age of diagnosis of the celiac disease the greater the chance of an autoimmune disease. Children diagnosed at age 3 or less have the same rate of developing an autoimmune disorder as the general population. In addition children with celiac disease have autoantibodies to the pancreas and the thyroid that disappear on a gluten free diet. The autoimmune disorder is usually diagnosed prior to the celiac disease because it is relatively "silent". The celiac disease is, however, thought to be the cause of the autoimmune disorder disorder.