Why is it important for people with Celiac Disease and/or other auto-immune diseases to be concerned about food safety and why would it be useful to go see Food, Inc.?

Celiac Disease and Auto-immune Disorders

Over the last 65 years, Celiac Disease diagnosis has moved from a pediatric centered, symptomatic diagnosis, to people of all ages increasingly being diagnosed by various tests, scans and more thorough biopsies.  In addition, Celiac Disease has been incorporated into a larger category: autoimmune disorders/diseases. Although I wouldn’t want to jump to any rash collusions, I think that what this means is that we can say with a bit more certainty that our immune systems are severely and continually stressed, most likely jeopardized and/or compromised. Add to the fact that approximately 70% of our immune system is in our “gut”, it makes a person stop and wonder just HOW stressed and/or compromised our immune system is or will be, and what the additional health risks and consequences are of such continuous stressing.
Food Safety
While attending Culinary School, I learned that people with compromised and/or undeveloped immune systems are more likely to be at higher risk for foodborne illnesses. And as a health educator I already know how important it is for people with compromised and/or continually stressed immune systems to be careful what they eat and drink.

Since I started my culinary studies two years ago, incidences of food born illnesses have increased immeasurably.
Some occurrences we know about because they fly above the “news” radar:

• peanut butter
• meat,
• lettuce
• sprouts

and then there are those instances that fly below the “news” radar:

• recalls of raisins because of undeclared sulfites,
• cilantro recalls,
• and salmonella outbreak from imported scallion contamination,

An interesting below the radar article is “Emulsifiers delay staling in gluten-free bread.” The on-line report talks about the various “items” being researched for use in making gluten free bread to extend its shelf life. Although the items/ingredients may be plant based, they are used to “preserve” the product. And these are elements that are NOT listed on the ingredients list. Like the significant bank crisis last year, this year our crisis is with our food: how it’s developed, protected, manufactured, distributed, imported and engineered.

Foodborne Illness
So, when you mix foodborne illnesses such as E.coli, Salmonella, Shigella, Hepatitis, and others, with an already compromised immune system, the risk of infection and illness becomes much greater than to the “healthier” public. According to Bill Marler, “Since the 2002 ConAgra e. coli 0157-H7 outbreak “millions more have been sickened and permanently disabled by food tainted with Salmonella, E. coli O157:H7, Listeria, Campylobacter, and other pathogens. Thousands have lost their lives.” If you don’t already know about Bill Marler and his work in food poisoning outbreaks and litigation, I strongly encourage you to read his blog. Marler is an accomplished, internationally known personal injury and products liability attorney.

Food, Inc.

Food, Inc., is a new documentary currently playing in a theater near you. Variety’s says: “With a constituency limited to anyone who eats, “Food, Inc.” is a civilized horror movie for the socially conscious, the nutritionally curious and the hungry. …it does for the supermarket what “Jaws’” did for the beach — marches straight into the dark side of cutthroat agri-business, corporatized meat and the greedy manipulation of both genetics and the law.” I encourage you to see it, but if you can’t get to see the movie for whatever reason, you can view an extensive interview by PBS ‘s David Brancaccio with David Brenner, director of Food, Inc. Access to the interview video is at the bottom of the page within an article about “The Veggie Libel Laws.” An interesting read, the on-line article says “Veggie Laws limit your right to talk freely about the food you eat.” One of my questions is how come there isn’t a law yet to limit or provide restrictions on the health claims of food products?
The Fragile Web
The first time I saw Food, Inc., I was overwhelmed. I thought I was already doing a lot and had a pretty solid understanding of food “stuff.”…but the movie has so much information, it has taken me 3 viewings to feel like I “get it” all. Living gluten free is a HUGE challenge, and now this….It felt like I was back at the beginning.

Gradually, as I’ve reflected on the film’s messages, I’ve begun to have even MORE questions about what is stressing/compromising our immune systems. I have believed for sometime now, although it hasn’t been “scientifically” proven yet, that gluten is not our only immune trigger. So now I am in even more of a dilemma about where to buy my food. I am fortunate that I can afford to shop in many places or that I live in a place where I can buy local. How do I reconcile what’s available in a conventional store with buying food and products that support my health and well-being? Why, as a consumer, do I have to choose?

And how fragile is the web that supports the commercial food system that feeds those people who can’t buy local, for whatever reason. Although it would seem as if it’s only conglomerates that would be affected, there are people that are and will be affected by the choices that others and I make. So, what are the unintended negative consequences of our choices?

Living in the World
I believe someplace in here it’s important to notice that we are all doing our very best. Whatever I’m doing, no matter how large or small I may think it is, I’m doing it. And when I can, I add a little extra effort in the food safety department.

We live at a time in history when there are many types of “crisis of faith.” There is a lot of information, much of it conflicting. It is becoming harder and harder to know which choice is which. Sometimes for me, it’s not even about which choice is right. Now, I balance my choices on this social activity called eating and my health. When I grew up these were not separate choices.

So, What To Do?
What can you do to care for yourself? Educate yourself. Eat less processed food. See Food, Inc. Buy local. Buy seasonal. Practice seed exchange if you garden. Read “Food Matters” by Mark Bittman. Educate yourself about what goes into your food and what affect it has on your immune system. By the way, do you know who owns the organic companies you buy your food from? Check it out.
Although the landmark Food Safety Bill HR 2749 finally passed the House on July 30, 2009, the law is no where near the President’s desk. You can track the happenings at La Vida Locavore.

Lately, I think we live in a pretty instant and fast paced world. Fixing the food safety system is a big job that can and must be changed.  It’s a brittle and rigid system that could use our care and stewardship. I believe that any change in a system, changes the whole.

Doing is an important part.

Dr. Alessio Faisano, Director of the Center for Celiac Research at the University of Maryland, in his new article: Surprises from Celiac Disease in the August issue of Scientific American,  states that “gluten causes this inflammation and intestinal damage by eliciting activity by various cells of the immune system.”  Dr. Faisano’s acknowledgment that gluten is an inflammatory agent is an important connection.  As many know the prevailing professional wisdom is that there is a relationship between Diabetes and Celiac Disease.  It is highly likely that we will see more dual diagnoses of Diabetes and Celiac Disease, so understanding how the Glycemic index works is going to be increasingly important.

My life-long journey with Celiac Disease led me to the Glycemic Index through Anti-Inflammation diets some years ago and I have been waiting for this book or one like it to reach me.  Although published in 2007, I just discovered it while in Portland, OR.  I mention Portland, OR because that was the place I first became aware of the problem with the Celiac Disease diet and recipes and diabetes.

Last year, my friend’s husband was diagnosed as gluten intolerant and pre-diabetic.  Handed the GF diet what he and his wife soon discovered was that his insulin spiked when he ate the “traditional” CD diet of rice, potato starch, tapioca and the like: all those staples in most of our recipes. Insulin spiking is not a good thing when you are pre-diabetic. Shortly after he was diagnosed, I met an Irish MD who was doing her internship at one of the hospitals in Portland, OR.  Her sister, who had Downs syndrome, is an insulin dependent diabetic and was recently diagnosed with Celiac Disease, was adamant that the “Celiac Disease” diet “needed major revision”…actually what she really said was that the CD diet was “just plain rubbish” in this very thick Irish accent.  Her sister couldn’t eat any of the recommended bread and certainly the rice was also major issue.  So, if there are friends of yours who are already dually diagnosed, the “Low GI Gluten Free Eating Made Easy” will be an important resource.

In addition to understanding the Glycemic Index, the authors make another important distinction.  They delineate 5 categories related to Celiac Disease.  Celiac Disease itself, Dermatitis Herpetiformis, Gluten Intolerance, Wheat Intolerance and Wheat Allergy.  Diagnosed as an infant in 1945 with Celiac Disease, I currently do not test positive for the changed classification of Celiac Disease. Not only are there people like myself, there are also many people who do not currently test positive for Celiac Disease for whatever reason.  Here in the US the prevailing allopathic medical view is that those of us who do not test positive for Celiac Disease do not need medical attention or are not as important. I have been told several times by allopathic doctors that it was fashionable to diagnose Celiac Disease in the 1940s and ‘50s and that my diagnosis is not a valid diagnosis. I am relieved to finally see that there is a book written with everyone in mind.

The recipes in “Low GI Gluten Free Eating Made Easy” are quite interesting and weekly food plans are certainly a good place to start. There is one suggestion I have when making wraps these days…Either use Vietnamese Rice wrappers or Iceberg or Romaine lettuce leaves as wraps.  The book refers to some gluten free wraps…but I suspect they are Australian and not a common item here in the US….yet.  The most important thing tho’ is that finally there is a book that connects the first set of dots between diabetes and celiac disease.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The NIH was interested in knowing:

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

There was one recommendation.

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

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

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

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