# 1 - WHY FOLLOW "SCD"? > * CELIAC DISCUSSION BETWEEN KAY STENCE & ELAINE GOTTSCHALL (AUTHOR OF BREAKING THE VICIOUS CYCLE)


The following is correspondence between Certified Health Coach, Kay Stence & Elaine Gottschall, author of BREAKING THE VICIOUS CYCLE, after Kay forwarded an article posted on the St. John's Celiac list regarding bacteria and Celiac Disease.

 

-----Original Message-----

From: Elaine Gottschall

Sent: Saturday, May 08, 2004 5:04 PM

To: kstence

Subject: Re: A Role for Bacteria in Celiac Disease?

 

Dear Kay

First, about the research on that celiac list.  It is really old hat. My lectures include scanning electron micrographs showing the mucus layer in celiac disease with bacteria of all sorts embedded in the mucus layer. These people are blind to past research.  Dr. Haas's 1951 medical textbook talks about the bacteria at length citing so many published papers during the early 1900's.  It's a wonder you have not developed apoplexy with that group.

 

By the way, the autism community has, in part, accepted SCD instead of GF. I just returned from lecturing in Washington, D.C. for 1300 people at the DAN (Destory Autism Now) Conference and will be leaving for Chicago for another autism conference at the end of May.  So far I have 5 speaking engagements throughout USA before the end of the year and they are increasing by the week.

 

Oh my goodness - feeding those sick people all that starchy gluten free stuff!  Oh my, oh my.

 

Thank you fellow warrior for your strength to follow that celiac group. Those poor people!

 

By they way, my latest printing - the 10th anniversary printing 2004 is now available at most stores.  If you send me your address, I will be happy to have one sent to you from our MI warehouse.

 

My website has links.  You can send people to any of them.  Rachel is still running the LI listserv and there are a few others.  I am not active on any lists because I continue to do research.  However, I keep in touch with people on all these lists and the testimonies of healing increase day by day.  Epilepsy, autism, celiac, Crohns, ulcerative colitis and on and on.

 

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

 

Elaine,

Thanks for taking the time to write back.  I'm so glad you are doing well and are making speaking engagements! Yes, I've kept up somewhat with the progress with autism.  What a great breakthrough!

 

I don't follow the Celiac list like I used to.  Just once in a great while I'll read a little . . . it's just so depressing.  I don't have the time to contact them personally, and of course, they won't let me write on the St. John's site any more . . . they said I wasn't "Celiac specific".  Humph! They will post my meeting announcement, however, so I am often contacted by some local Celiacs who are on the list.  I still run the announcement as Austin Gluten-Free Friends although we officially call ourselves Austin SCD Friends now.  Others who try to write about the SCD have gotten the boot, too.  I've finally faced the sad fact that the food, pharmaceutical & medical industries don't want the public to get well or even healthy.  So sad.

 

I recently received a free copy of A PERSONAL TOUCH from a vendor, and was heartsick by the time I finished reading it.  It's a compilation of 'success stories' of Celiacs.  I noticed that many of them are newly diagnosed Celiacs who've followed the GF diet only a short while.  I wish the author would go back and do a follow-up story on all these people a year later . . . and report the results . . . but I'm sure we won't see that happening. What I see is that Celiacs get some better when gluten is removed and then become sick again when they replace the gluten with "gluten free junk foods" loaded with the starch that feed the bacteria. They think they are getting gluten somewhere and are frantic to find the source.

 

Our group in Austin is steadily growing.  We are having more Crohn's people join us than anything else.  Some get serious, some don't . . . but we're doing what we can. It's amazing to me how many people are passing the info on to desperate people that you or I will never meet.  Your work is spreading!!!

 

Questions:

1.  What can I tell Celiacs who've been told that they have the gene that causes Celiac Disease? Am I correct in saying that one can carry the gene/genes that can predispose them to getting intestinal diseases . . be it called Celiac, Crohn's, UC, Colitis, etc.?  If there are some "magic words" to explain this better, please let me know.

2.  Also, am I correct in saying that gluten intolerance, is like lactose intolerance, acid reflux, flatulence, diarrhea, constipation, etc. . . . in that they are all "symptoms" of a digestive problem or damaged gut caused by inappropriate diet, meds, etc.?

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

 

Dear Kay

Here are my answers to your questions:

 

****You are correct in stating that certain variations in genes can predispose people to certain diseases if the environmental factor plays upon this so-called polymorphisms (variation in gene).

 

I have some background in chromosomal work but I have often wondered from which cells at what age, these chromosomes (with their specific locations of genes) have been garnered.  DNA which makes up the genes is susceptible to mutations because of deficiencies of vitamins such as folic acid and B12. For example, for a celiac:  if his chromosomes have been checked out after he/she has expressed malabsorption problems, then these various changes in the genes which the researchers have reported and which they admittedly must interact with environmental stimuli - well the lack of absorption of B12 and folic acid, may actually cause the gene to show these variations from what is considered normal. New cells are forming all the time and must have certain nutrients in order for the DNA of these new cells to be formed normally.

 

Furthermore, it has been shown that gluten separated from grains does not effect these celiacs.  But they keep drumming the same old story over and over again.  And these poor people are so happy that they were not sent to a psychiatrist that they buy into it.

 

I should get you in touch with one of our supporters on the autism list. Carol Frilegh was diagnosed with celiac and was sick as a dog before SCD. We have many.  The link on my website to the Bed and Breakfast on Vancouver Island run by Natalie P is another one who found cure of celiac by following SCD.  And on and on.

 

****Gluten intolerance is explained by the fact that they believe that part of the gluten molecule is not broken down into its amino acids by normal digestive processes and is getting into the blood stream intact through what is termed "leaky gut."

 

Then this inappropriate entry provokes immune reactions which they say can run the full gamut of symptoms.  But what causes leaky gut!!!!  It is bacterial overgrowth on the surface of the intestinal cells which allows the tight junctions between cells to open up.

 

These autistic children showed some improvement sometimes when gluten was removed.  But their guts got worse on the gluten free diet.  On SCD, we are seeing them emerge from their autism.

 

Fondly, E

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

 

Elaine,

Are you saying that the DAMAGED genes that predispose someone to gut disease can be passed from parents to children also predisposing the children to have gut problems . . if the environmental factors are right?

 

In Celiac research they are saying that if you carry a certain gene, you'll have Celiac Disease. They also say Crohn's, and perhaps some of the other diseases, are genetic.  I'm trying to understand that if someone carries the gene that THEY SAY causes Celiac Disease, is it possible that gene could predispose someone to IBS, Crohn's, UC, Diverticulitis, or any of the other intestinal diseases . . . depending on the environmental damage, of course? I guess I'm asking, is there a common gene that all people with gut problems (no matter what name they give their gut problem) carry?

 

I know that different doctors sometime diagnose the same person's gut problem differently.  And of course, they are saying that Celiac Disease is one of the most misdiagnosed diseases.  (It seems to me it is THE most misdiagnosed disease . . . since it's not a disease at all!)  Am I right in saying that a damaged gut is a damaged gut, and that all these diseases are basically a result of damage from overgrowth, and that  doctors just give them different names based on what area of the intestine/colon is affected and the degree to which they are damaged?

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

 

Kay,

There are multiple genes that have been identified when working together with the proper environmental factors that will PREDISPOSE someone to celiac, UC, or Crohns.  Additionally, if someone is suffering a nutrient deficiency such as folic acid, B12 or even essential proteins which must come from the diet - well then you can have a disease manifest itself.

 

They have NOT IDENTIFIED A GENE WHICH, if you have it, will cause celiac. And they are still up in the air about gluten and they don't really know what is going on with the immune system and they keep getting more involved and telescopically examining everything.  Blaming gluten is as bad as blaming heart disease on cholesterol in the diet:  certain people seem to have an agenda where they MUST PROVE THIS.

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

Elaine Gottschall’s personal experience that led to writing Breaking The Vicious Cycle:

THE SPECIFIC CARBOHYDRATE DIET

Elaine Gottschall, B.A., M.Sc.

www.breakingtheviciouscycle.info

Two Views: Mother and Scientist

 

A Mother's View: From 1952 to 1960, there seemed to be no answers to the series of health problems facing our child. Periods of severe diarrhea, severe constipation, spontaneous nosebleeds, night-time siezures, failure to thrive, and, finally, the diagnosis of ulcerative colitis. The years of treatment with prednisone and sulfonamides, plus innumerable other medical approaches, had been unsuccessful and surgery seemed imminent. The prospect of the removal of an eight year old child's colon can be described , as one Mother said when faced with the same prospect, "it was like every black cloud ever created was hovering over us." And then, it happened! An acquaintance pointed us to the office of Dr. Sidney Valentine Haas, a specialist practicing pediatrics in New York City. Ninety-two year old Dr. Haas placed our child on the Specific Carbohydrate Diet and within days, the neurological symptoms went, never to return, the colitis symptoms were completely gone in one year . She began to thrive leaving all the previous problems behind and making up for lost time.

 

How could a simple diet cure an "incurable disease?" The mystery haunted me and launched me on a "treasure hunt" through academia for the next 12 years.

 

A Scientist's View: The pieces of the puzzle began falling into place during the process of integrating old and new findings in the science of digestion, immunology, nutritional biochemistry, microbiology, cellular biology, and histology. Even as this odyssey progressed, discoveries were rapidly being reported in the medical literature. It became apparent that in those suffering with intestinal problems there is injury to the intestinal surface, specifically, to the digestive enzymes residing on the intestinal cells. This prevents the completion of digestion of most carbohydrates and some protein and, therefore, these undigested foods provide excess nutrition for the unseen world of intestinal microbes. Result: they overpopulate. Their increase in numbers results in an increase in fermentation. This results in :

 

The production of an excess of short chain organic acids (thus lowering of the pH of the colon);

 

An increase in the production of metabolic byproducts of fermentation as well as bacterial toxins; and

 

A possible mutation of some harmless bacteria into pathological forms.

 

Additionally, excess mucus production on the surface of the intestinal cells prevents further digestion and absorption of carbohydrates.

 

The Specific Carbohydrate Diet, developed by Dr. Sidney V. Haas, provides an intervention to this vicious cycle by depriving intestinal microbes of their energy source while providing excellent nutrition to the patient. By providing a diet that contains predominantly "predigested" carbohydrates, the individual with an intestinal problem can be maximally nourished without over-stimulation of the intestinal microbial population.

 

Slides show biopsies taken from children, all with chronic diarrhea, (including soy-protein, milk protein, and gluten sensitivities). It can be seen that the intestinal mucosa has an increase in mucus covering in which colonies of microorganisms are found. There is increased cell shedding and turnover, damage to the intestinal microvilli, partial and complete villous atrophy, and resulting carbohydrate intolerance.

 

To summarize, the continual, indiscriminate feeding of undigestible, and, thereby, unabsorbable carbohydrates to individuals with chronic diarrhea (with various diagnoses) can only perpetuate and exacerbate the problems.