Celiac.com 08/11/2021 - It takes a well-trained CIA operative to decipher some of this stuff.  If the consumption of fat is thought to contribute to fatty liver (which it doesn’t), then why is it found in the context of starvation?  Why is alcoholism the leading cause of fatty liver disease in people?  And why does gastric bypass surgery, which involves a dramatic reduction in calories, trigger fatty liver disease?  This same surgery is also associated with the precipitous development of iron deficiency anemia, bone density issues (osteoporosis) and immune failure in many cases.  The morbidity rate following this harmful surgical invention is staggeringly high, and totally explainable.  They’re making acute surgical celiacs out of these people.  The symptoms they show could be the direct result of malabsorption of vital nutrients that would normally be picked up by the duodenum (calcium, iron, iodine, B complex, vitamin C, and trace minerals).  This kind of physiological stress could trigger just about anything, including a subclinical viral infection (or viral adaptation) of the liver.

But why do I get so upset over seemingly insignificant news items claiming that fatty liver disease is the result of eating fat?  Because the low fat diet is one of man’s worst dietary inventions!  Fat is crucial to a healthy diet, serving as a vehicle for certain vitamins to enter our body (the fat soluble A,D,E,K) the source of essential fatty acids (omegas), and the provider of protection against things trying to affect and invade our body, including these pesky lectins I keep writing so much about.  Yes, dietary fat (animal fat not man-made trans fats) helps to block the attachment of certain dietary glycoproteins (e.g.  the harmful ones from gluten, dairy, soy, etc.) to the villi of our intestinal tract.  Other things that help in this regard are good carbs and glycoproteins from fruits and veggies such as pectin from apples.  Pectins actually bind lectins.  Fats more or less coat the GI tract and prevent the attachment of lectins.  That is why whole milk is less harmful than skim milk, as I have discussed before.  

About five years ago I started seeing more and more chicken allergies in dogs.  I wondered if it was because dogs were eating more chicken and that it was a secondary food allergen due to the damage being done by the “big 4” (gluten, casein, soy, and corn) like so many other food allergies, or whether there was something in the chicken that was inducing the problems.  
 
I decided to check out what they were feeding poultry on the hunch that they were loading them up with gluten grains and corn.  Five minutes into an Internet search yielded my answer.  As of about 10 years ago now, they have been pouring the wheat to chickens and turkeys.  If they fed them too much wheat, do you know what happened?  They died of fatty liver syndrome.  Until now, fatty liver syndrome has been considered “idiopathic: in veterinary medicine.  Cats die from fatty liver syndrome.  Fatty liver disease is the leading cause of liver disease and failure in the cat.  
 
And what is the leading cause of fatty liver disease in people?  Alcohol—grain alcohol.  Most alcohols are made from grains, including beer.  Could it really be the lectins in the grains that are inducing the fatty liver disease more than the alcohol itself?  That makes sense when you think about the number of people who drink (excessively) versus the number who develop fatty liver disease.  There has to be something special about those people.  Either they have gluten sensitivity or a resident virus or both.
 
We are making great strides in expanding our understanding of lectins (e.g.  those in the “big four”, legumes, grains, corn and dairy), environmental pollutants, trans fats, and the damage done by some drugs.  Celiac awareness has opened a number of doors and will lead to improved understanding of dairy, soy and corn intolerance as well.  I can’t wait for cow milk to finally be publicly convicted for what it has done to human and veterinary health.  That time is coming soon.  
 
We have had this wrong for years and the evidence has pointed us in a better direction for a number of years as well.  Fat is not the enemy.  You don’t get fat from eating fat.  Dr. Atkin’s helped prove this.  Similarly, your cholesterol does not go up primarily from eating dietary cholesterol.  Further, an unusually low cholesterol diet is not healthful.  Cholesterol, for example, is the building block for all of our hormones, including sex hormones and cortisones.  It is an essential component in immune responses and in the protection of individual cells from invasion by harmful substances and organisms.  The anti-cholesterol and anti-fat campaigns are ill-conceived, misguided, and harmful to our health, thus my passion on this topic.  

Celiac.com 08/07/2021 - The following is a summary of the 2007 International Celiac Symposium

February 20, 2007—Meeting Dr. Michael Marsh

The XII International Celiac Disease Symposium was held on November 9th through 11th, 2006, at the Hilton Hotel in New York City.  International Celiac Disease Symposiums have been held every two years throughout the world.  I was thrilled to be able to attend this Symposium because it was in New York.  

The Celiac Symposium was separated into two categories for this event.  Physicians attended one forum and celiacs and dietitians attended a separate Clinical Forum, however, many physicians also presented material at the Clinical Forum.  

The highlight of the Symposium, for me was meeting Dr. Michael Marsh—quite by accident.  Who is Dr. Marsh?  He wrote the only textbook for gastroenterologists on Celiac Disease in 1992 and updated it in 2000 and he is constantly being quoted in celiac literature.  When a celiac patient’s biopsy is taken for the diagnosis of celiac disease, the category of markers used to evaluate that biopsy are called the Marsh scale, named after this great man!  The Marsh scale describes the amount of gut damage seen on a biopsy as Marsh I, Marsh II, Marsh III, etc.  These markers have been used since the eighties!

Dr. Michael Marsh was a gastrointestinal researcher from the University of Manchester when he wrote the first textbook on celiac disease.  He has since retired to study Neurobiology at Oxford.  He is clearly one of the nicest people I have ever met.  I met him quite by accident because the Hilton was very crowded with never enough tables, so I crashed a table of all men so that I could have a seat to eat my lunch.  I found out one person at the table was Dr. Michael Marsh!  I asked him how he felt about all the research going on for a cure for celiac disease.  He said, “we have a cure for celiac—the gluten-free diet”.  

Dr. Marsh was given an award at the Symposium by his fellow peers, which is testimony to the contributions they feel that the man has made in providing the level of understanding that was needed to make a true diagnosis of celiac.

Dr. Chaitan Khosla from Stanford was Impressive

Dr. Chaitan Khosla from Stanford made a very impressive presentation.  In the past, most research on celiac disease has been done by gastroenterologists—Dr. Alessio Fasano, Director of Research from University of Maryland, Dr. Peter Green, Director of Columbia Celiac Research Center, etc.  However, Dr. Khosla is a Professor of Chemistry in Biochemistry at Stanford and clearly a scientist.  He became motivated to become involved in celiac research because his wife and one of his children are diagnosed celiacs.  I am very optimistic when celiac research is attracting those with such a variety of medical backgrounds, and I feel it can only help to lend new understanding to one of the most frequently undiagnosed diseases in medicine today.  

There was much discussion about which country was making the most progress in raising money for celiac research.  I was impressed that the Swedish government recently gave $8.5 million toward celiac research.  However, Sweden is a country with socialized medicine and a much smaller country than the U.S.  It also has one of the highest ratios of celiacs.

I was most impressed when Dr. Khosla became rather irritated by the many comments relating to which country had the most funding.  He announced, “Science is not owned by any one country—it belongs to the world!  We need the best scientists in the world to work on celiac disease research!”  I will never forget that impressive statement!

Dietitians/Nutritionists Discuss the Gluten-Free Diet

• Tricia Thompson, MS, RD, USA, discussed “The Gluten-Free Diet”
• Carol Semrad, Gastroenterologist and Nutritionist from University of Chicago discussed “Determining Safe Amount of Gluten”
• Ann Lee, MSEd, RD, CDN from Columbia Celiac Disease Center discussed “What are Safe Grains?”
• Melinda Dennis, MS, RD, LDN from Beth Israel Deaconess Medical Center discussed “Gluten Contents of     Medications/Supplements:  A cause for concern?”

These four are recognized as some of the most respected nutritionists in the country.  Tricia Thompson, author of the American Dietetic Association’s booklet, “Celiac Nutrition Guide” said, “There is no worldwide agreement on the gluten-free diet.  In some places, like the U.K.  wheat starch where the gluten has been removed is fully acceptable, whereas in the USA we still have zero tolerance for wheat starch.”

Ann Lee stated that there is no requirement that gluten-free grains be fortified.  There was much concern amongst these professionals about celiacs consuming recommended amounts of fiber, iron, calcium and grain foods.  They encouraged celiacs to try the many alternative grains such as amaranth, buckwheat, millet, quinoa, teff and wild rice that provide greater nutrition for celiacs.

Melinda Dennis stated that over-the-counter and prescription medications do not have to disclose allergens.  Many over-the-counter drugs contain gluten and must be researched.  We should check for gluten in nasal sprays, inhalants and eye-drops.

Carol Semrad says the gluten-free Labeling Law will go into effect in 2008, which will determine the proposed amounts allowable for a manufacturer to label products “gluten-free.   Between now and 2008 there will be much discussion about this topic.

One of the most rewarding feelings I had at the Symposium was in meeting so many dietitians who were sent to the Symposium by their gastroenterologists so they could return to their communities and update others on the many dimensions of celiac disease and the gluten-free diet!  One gastroenterologist from North Carolina not only attended himself, but paid the expenses for his whole staff including  a nurse, a nurse practitioner and a dietitian  to educate them about celiac.  Many gastros from all over the country financed the cost of the seminar and travel expenses for their dietitians—a wonderful trend that I hope “spreads.”  I met so many dietitians whose expenses were being funded by their gastroenterologists that I was clearly impressed.  However, I did not meet any dietitians from Connecticut whose expenses were being paid.

Contributions Made by Connecticut People 

When I heard Dr. Khosla speak, it reminded me of the fact that Connecticut’s own Dr. Ted Mahalias, dentist from Waterford got involved in celiac research because he also had a wife and daughter with celiac and noticed dental enamel defects in their teeth.  It is exciting that now his study is being conducted through the Columbia Celiac Research Center.  Dr. Ted Mahalias spoke at the Symposium and discussed, “Dental Enamel Defects—Another piece of the puzzle.” Can dentists help diagnose celiac disease?

Another Connecticut resident, Rory Jones from New Canaan was extremely busy selling the recent book she co-authored with Dr. Peter Green, Director of Columbia Celiac Research Center.  The name of the book is Celiac Disease:  A Hidden Epidemic.  The book has made giant strides in creating celiac awareness throughout the country and is the only book written by a celiac expert and his patient!  Rory had gone for years without a true diagnosis of DH until Dr. Green initiated his celiac research at Columbia by asking local endocrinologists to send him their “worst case scenario” of blood tests that were misleading to them.  Because of that effort, Rory was finally referred to Dr. Green and diagnosed after many years of pure frustration!   Rory, a medical writer was able to convince Dr. Green that they could write a book together on celiac so that others would not have to suffer needlessly as she did.  The book has been warmly received by celiacs, physicians and dietitians throughout the country!  

Many speakers stressed the need to develop awareness programs among primary care physicians and pediatricians.  I have spearheaded that effort personally by giving all of my doctors a copy of the book, Celiac Disease:  A Hidden Epidemic and I encourage others to do the same.   We live in an age of specialists and celiac is a “multi-system” disease.   The more your doctors know about celiac, the healthier you will be.  The book has been welcomed by all of my doctors.  

Celiac medical experts are making serious efforts to create celiac awareness among physicians by writing articles for medical journals.  Celiacs themselves can create celiac awareness by joining a celiac support group and participating in Walkathons to help fund celiac research or by “spreading the word” in their own communities by giving their doctors current books on celiac.  Celiac awareness can be accomplished from the top down or the bottom up!  Because celiac is genetic, the people you might be helping could be one of your own relatives!  

Celiac International Society Being Formed

The Celiac International Symposium has been held every two years throughout the country on even numbered years for many years.   Much progress has been made in celiac research, understanding the disease as a “multi-system” disease and helping to get more cases of celiac disease diagnosed with the best possible diagnostic tools.  Many people feel that meeting more frequently would keep up the enthusiasm that was felt at the Symposium and hasten the progress that is being made in all aspects of celiac research!

Immediately after the Symposium, Dr. Peter Green, Director of Columbia Research Center announced that he was forming the first Celiac International Society which would meet in the US on odd numbered years and therefore creating a forum so that researchers could meet yearly.  This is exciting news for the celiac community and we applaud Dr. Green’s efforts!  No decision as to where the International Celiac Society in the U.S.  will meet, but this gesture is clearly a giant step in promoting celiac research throughout the world and keeping up the steady pace of creating “celiac awareness.” which is so sorely needed.  

We encourage you to help create celiac awareness in your own community.  Join a support group!  Support Walkathons to raise money for celiac research!  Get involved!  Together we can “make a difference”.  

Celiac.com 07/31/2021 - Although my theory on the ultimate, underlying cause if idiopathic epilepsy (viruses) is only a theory (backed by mounds of data), the response of epileptic dogs (and people) to the elimination diet I propose is far from theoretical.  It has halted seizures in even the most refractory of cases time and time again.  It has stopped seizures overnight in dogs that were about to be euthanatized by board-certified veterinarians for “non-responsive” epilepsy.  It has eliminated seizures in people with a lifetime of seizures, ranging from children to adults in their 40’s and 50’s, including those with head trauma-induced epilepsy.
 
The response of theses individuals, in addition to the fact that there are more than 24 known viral causes of seizures, has led to my “theory” of chronic latent viruses being the ultimate reasons why one individual has epilepsy and the one next to them does not.  This is no more far-fetched than what we know about cancer...viral information embedded in our very genome that is “unleashed” once the circumstances are correct.  (Once we have done enough wrong to ourselves and our pets, actually.) I guess we could use the term “epileptogens” rather than carcinogens when discussing the things that cause epilepsy to begin between 6 months and 6 years of age, 2-14 years, and then again, after age 65 in people).  Why the delay?  Doesn’t that pattern in people smack of the same things that cause leukemia?  
 
My ultimate “cause” of epilepsy theory is driven by viral agents but the dietary management of these patients is a 6.5 year fact, supported by similar, published, and well-publicized work in human medical research into the ketogenic and now the “modified Atkins” diets.  They are coming close to the real answer, which is my diet, but they are woefully deficient in what they are eliminating.  The step from ketosis (for which NO healthy individual should ever volunteer) to a non-ketotic diet found in the “modified Atkin’s” is a step in the right direction.  Are you familiar with these dietary developments in human medicine, studied extensively at John’s Hopkins and The Mayo Clinic?  I’m sure you must be.  
 
What is it that they are eliminating that is making a difference in 30-50% of individuals to which they apply it?  Why not 60, 70 or 90%.  Why not 100% like we are experiencing.  Yes 100% of patients with idiopathic epilepsy that I have been involved with have had a notable response, the majority of which stopped seizing completely.  100%.  That is a stiff claim, isn’t it?  It’s true, though.  And it is the wellspring of the passion I have for this topic and why I spend my time writing on forums instead of playing golf.
 
Why not speak at ACVIM meetings?  Why not write in peer-reviewed journals?  First, I am a solitary practitioner.  Other than my internship at Angell Memorial, I have no clout.  And believe me when I say that I tried to reach people in high places.  

Academia is an ivory tower that is difficult to approach, especially in human medicine.  Thank God (literally) there are alternatives to simply trying to change the mind of the two professions before any help can be rendered to the masses.  Thank God (again, literally) that the afflicted can now be their own best advocates and find answers on their own.  Thank God for the Internet.  
 
The time has come for medicine to change.  Our blind approach of masking symptoms with drugs has come to an end.  Seizures serve a purpose just like every other symptom that occurs in our body and until we see that, we will never be better at curing disease that we are now, and our success is dismal at this point.  Our limited understanding of nutrition is appalling.  How any educated person can say that diet has nothing to do with epilepsy (or any other medical condition for that matter) is beyond me but that has been the response of almost every board certified vet or practitioner that has been presented with this idea by an interested client...just before their seizures were stopped by changes to the diet.  
 
The “startling” fact is that nutrition has everything to do with our body running on the nutrients it acquires from food.  We don’t get proteins, fats, vitamins, and minerals from air, do we?  Cellular metabolism and enzyme systems don’t run on oxygen alone, do they?  So how could a board-certified doctor, human or veterinary, say that “nutrition has nothing to do with seizures”???  Do you sense my frustration?  I have spent the past 7 years trying to get this word out to colleagues and doctors alike.  My head is bloody from hitting it so hard against that wall.
 
But the progress I have made in the private sector has been astounding.  Now my time has come to share it with the professionals.  If I waited to hear from my or the human medical profession, I would have died waiting.  Google “DogtorJ” and you’ll see where I’ve been (other than car forums).  I spoke at two AHVMA conferences.  I recently spoke at an international conference of MDs.  And I will be speaking at the upcoming NAVC conference in Orlando in January.  Dr. Jean Dodds and I are in total agreement on this approach and correspond very regularly.  I have doctors at both Johns Hopkins and Mayo interested in this work, and the director of integrative medicine at Mayo is trying to get an NIH grant to study it.
 
Maybe this approach has been backwards when viewed from inside the ivory tower, but this is becoming the mode these days.  Most of us are aware of the public’s rising level of dissatisfaction with medical care.  If medicine was a government a revolution would be in the offing.  The doctor jokes are exceeding the lawyer jokes now.  My clients regularly volunteer to me how much they “hate” the medical profession.  I didn’t think I would see that day.  
 
Why are they so vehement about their disdain for “us”?  Simply put, they are waking up.  They see the absurdity of taking fever-reducers for a fever ‘caused by a virus or bacteria because they intuitively know that the fever serves a vital purpose in our healing.  Similarly, they don’t see the logic in treating cancer with more carcinogens.  They don’t understand why you would treat a condition like MS or lupus that results in individuals with weakened immune systems with immunosuppressive drugs.  The scary thing is that these treatments eem to make sense to those who prescribe those “remedies”, just as they did to me for 21 years.  Now that’s a scary and humbling thought.
 It’s time for us all to wake up.  And, it’s time for us to put aside our pompous attitudes, imagining that we know so much when we really understand so little.  Hey, “idiopathic” is our favorite word.  How can we be so smug when we know that this is true?  Even worse, how can we let a word like that shut off our brains when there is a finite number of causes for any disease we care to discuss.  We hold up that word like a banner while casting aside ideas that actually work.
 
I do understand how the system works.  Again, thank God there are alternatives to that system.  Otherwise, conventional (internal) medicine would lead us all into our graves.  Granted, they often squeeze another 15 years out of a human life using drugs, controlling heart disease and the like.  But they have done nothing to halt the incidence of heart disease, immune-mediated diseases, and cancer.  It has simply been a race to determine this year’s number one killer.  It is time to actually prevent and even CURE these conditions.  Our disbelief that this can be done only illustrates how far we have strayed from the proper path of the healing arts.

Celiac.com 07/16/2021 - I’d like to serve a healthy, home-cooked dinner to my family, but it takes too much time.

I frequently hear these words from harried cooks who are probably among the 75 percent of us who—at 4 PM on any given day—don’t know what they’re having for dinner that night, except that they want it to be quick and easy.  

A recent study by the NPD Group ( a market research organization) found that while the majority of Americans say they want to eat healthy—that is, more whole grains, fiber, calcium, and vitamin C and less fat, calories, cholesterol, and sugar—the driving force in their eating habits is convenience.  

Everyone loves a home-cooked dinner, yet few of us have time to prepare one from scratch.  Over the years, I’ve discovered some principles that make food preparation quicker and easier.  They’re in my latest cookbook, Gluten-Free Quick and Easy, (Avery/Penguin Group, August, 2007).  Here are some excerpts from that book.

Planned-Overs Save Time and Reduce Waste

While some people turn their noses up at leftovers, smart cooks know that using them in new and different ways not only disguises them, it also saves time and reduces waste.  In fact, these clever cooks intentionally create leftovers.  However, we call them planned-overs to show that we have definite plans for how we intend to use them again.  

For example, if I roast a chicken, I automatically know that a couple of days later we’ll have chicken pot pie or some other kind of chicken casserole.  The chicken bones immediately go into the stockpot to make chicken broth, which usually simmers during dinner.  Later that evening, after the broth has simmered, it goes into the refrigerator to cool—right in the stockpot.  The next day, I skim off any unwanted fat and freeze the broth in 2-cup containers.  If I have any leftover broth after filling all of my containers, I whip up a quick chicken noodle soup.  If there is any leftover chicken meat, it goes into a gluten-free tortilla wrap for a quick lunch.  Nothing goes to waste.  As you can see, that single roasted chicken determined several meals for later that week.  

Prepping Ingredients Ahead

Sometimes it pays to prepare larger amounts of ingredients that you know you’ll use in the near future.  For example, when I buy bacon, I fry the whole package until not quite done and freeze it in heavy-duty food-storage bags.  Layered between two paper towels, a slice just takes a few seconds to become crispy in the microwave when I need it quickly for a recipe.  

Perhaps your recipe calls for a half cup of chopped onion.  Why not chop the whole onion and store the remainder in the refrigerator or freezer in a food storage bag?  Or, perhaps a recipe calls for a half pound of browned ground beef.  Brown the whole pound and freeze the remainder.  Need a quarter cup grated cheese?  Grate a whole cup and store it for a future pizza (it will grate faster if it’s really cold or slightly frozen and the grater is coated with cooking spray).  That way, it’s ready when you need it and you trim precious minutes off preparing a future meal.  

Suppose you have a recipe that calls for a pound of browned ground beef.  Why not buy two pounds and cook both of them, freezing the extra pound for later use in pizza, sloppy Joes, or beef goulash—shaving precious time off food preparation on a busy weeknight.  

This “extra” technique works for side dishes, too—extra mashed potatoes top a shepherd’s pie later in the week and two cups of cooked rice becomes pork fried rice.  Cooked vegetables show up in a couple of days as a hearty soup.  Too many apples?  Peel, then fry them in a pan with a little butter and cinnamon to cook up some chunky applesauce.

Even the preparation of small, seemingly insignificant ingredients can reap time savings.  Grate zest from lemons or oranges before you squeeze them—even if the recipe doesn’t call for zest—and freeze it in a container.  Wash and dry an entire bag of lettuce, rather than just the amount you need today and store it in a plastic food storage bag in your vegetable crisper. 

Fewer, But More Flavorful, Ready-Made Ingredients

We can reduce our time in the kitchen by using fewer, but more flavorful ingredients.  For example, a splash of vinegar or lemon juice in a sauce can jazz up the flavor and reduce the need for more salt.  Chicken broth is more flavorful than water; sherry vinegar or balsamic vinegar is more flavorful than plain vinegar.  Dried herbs are far more potent than fresh ones and don’t require washing and chopping.

Since the Food Allergen and Consumer Protection Act of 2006, we can use more ready-made ingredients because the label will indicate whether they contain wheat.  For example, I make a wonderfully easy black bean soup with 3 ingredients: canned black beans (rinsed and drained), chicken broth, and enough Mexican tomato salsa to bring the flavor to the desired intensity.  

Everything in Its Place for Efficient Organization

You’ve probably heard chefs use the term “mise en place” (pronounced meez-ahn-plahs).  This elegant French culinary term simply means “everything in its place,” or having all the ingredients ready on your work space (measured, chopped, etc.) so you can cook quickly and efficiently.  It’s particularly important in baking, where precision and accuracy are critical.  

This concept of “everything in its place” can also apply to a tidy, organized work space as a major time-saver.  A messy kitchen counter slows you down if you constantly have to push other items aside to make room to do your work.  As you organize your kitchen, sort through appliances, utensils, bakeware, and cookware.  Toss (or donate) anything that isn’t being used and organize the things you do use so that they’re easy to access.  

Use a Grocery List to Maximize Shopping Time

Efficient cooks have a system to know what to buy and when, much like a company maintains its inventory.  That’s where a grocery list comes in handy.  To minimize your shopping time, you need a grocery list format that works for you and doesn’t make you run back and forth between aisles, wasting precious time.  

If you already have a master grocery list, great!  If not, here’s how to make one.  Lay out the list in the order in which you walk the aisles of your favorite grocery store, ending up at the checkout line.  Organize it by what foods are in each aisle.  If possible, assemble this master list on your computer so you can print a supply of forms.  Carry this list with you at all times so you can add to it when necessary.  

Reap the Benefits of Saving Time in the Kitchen

Getting a healthy, safe dinner on the table every night can seem daunting, especially when we’re pulled in so many different directions at that time of the day, but it can be a reality if you follow these quick and easy principles.  At the least, they should help you get dinner on the table sooner, freeing up the rest of the evening for other chores such as helping the kids with homework, doing the laundry, or spending a few precious minutes with that special someone.  

Celiac.com 07/09/2021 - In this age of "Sex & the City," more and more women are taking a headstrong, Samantha Jonesian approach to dating.  I used to be one of them.  I remember once shoving a guy I barely knew into a bedroom at a house party and slamming the door shut behind us.  But all that changed a year and a half ago when I was diagnosed with celiac disease.  

What's a Samantha Jones to do?  Whisper into someone's ear, "uh, listen, I'd love to shove you into that bedroom and kiss you but the list of things to which I'm severely allergic is so extensive that in order not to risk damaging my health I'll need you to first proceed to the bathroom and brush your teeth." As well as the toothbrush obstacle, other dating dilemmas plague us celiacs.  Most restaurants offer few dishes which we can feel confident are gluten-free.  Even at home, we have to be wary of slip-ups by our friends and family.  Constant vigilance is necessary, and this unfortunately takes the form of nagging.  

I spent several months mourning the sudden loss of my spontaneous and care-free self.  With a faint and awkward hope I kept what I referred to as "the emergency make-out tooth brush" in my bag, but it remained entombed with my confidence beneath my wallet and ipod.  

My dating dry-spell had more to do with my sunken confidence than my strict diet.  I felt apprehensive about approaching people.  Whereas before I would guide the evening through my conversation and body language, now I feared to tread into overtly flirtatious territory because the dreaded tooth-brushing conversation loomed ominously over the beer bottle in the hand of every prospect.  

I dreamed that a handsome, confident individual would lift this downtrodden rag doll off the floor.  I imagined him taking me in his self-assured arms and reminding me how special and desirable I still was.

One weekend, at long last, I met someone.  We connected instantly.  I braved the tooth-brushing talk and he responded with a warm chuckle.  Finally, I thought, I am saved.  Yet when it came to discussing the severity of my lifestyle restrictions, I held back.  My health necessitated a forthright and extensive conversation.  Instead, I euphemized, tip-toed, and scurried ineffectually through the matter, hoping that he would put together the pieces.  

There was a constant procession of things I needed to bring up with him: What kind of toothpaste was he using?  I can't drink that kind of instant coffee; Was the buckwheat flour in those cookies ground on the same mill as wheat?  …and so on.  Embarrassing gastro-intestinal reactions occurred because I was sometimes too ashamed to assert my needs.  After a few weeks, my mind was so confused by the onslaught of insecurity and annoyance that our relationship soured.  

In the early stage of most relationships, it is probably better to touch upon our quirks rather than delve into the awkward details.  I do not think, however, that this is the case for celiacs.  We are a breed who must lead by example: If others see us taking a laid-back attitude toward our diet, they will think it's acceptable for them to do so, too.

I have been asking myself the same question ever since I was diagnosed: "Why should I feel ashamed?  I am meticulous for medical reasons.  I am not just ‘fussy' or ‘picky.'" I've come to realize that my new insecurity is the result of two things: first, I sadly admit that my pre-diagnosed self would probably not be very empathetic towards a celiac.  The second reason for this hang-up is that I wasn't that secure and confident to begin with.  

In retrospect, I see that I was simply enacting roles I'd seen successfully executed by others.  Clever remarks, flirtatious gestures, bold actions—these were facades which hid self-doubt.  Had I truly been confident, I would have accepted my disease as a unique quirk.  Instead I felt flawed, undesirable, even freakish.

I am slowly coming to terms with my new life.  Things are going to be different, but that doesn't mean they will be worse.  I can no longer be the same carefree person I once was.  Maybe that's okay.  Personal growth has come from no longer relying on spontaneous kisses to fulfill me.  I've also come to better empathize with the disabled and seriously ill.  Finally, I've accepted the fact this Raggedy-Ann must build her own muscle.  I am now developing the strength to stand tall from within, not searching for it from without.

Celiac.com 07/02/2021 - Do you suffer from symptoms of abdominal pain, stomach aches, excess bloating, gas, diarrhea, fatigue, bone or joint pain, skin rashes, headaches, difficulty concentrating or irritability?  Gluten, the major protein in wheat, barley and rye causes these symptoms in many people but most, including their physicians, are unaware that gluten is the cause and that a gluten-free diet may relieve these symptoms.  Though there are diagnostic blood tests available for identifying gluten sensitivity, these test have limitations.  Many physicians are unaware these blood tests are available, including genetic tests for the risk.  Most physicians are also unaware of the broad manifestations of gluten sensitivity and fail to order tests that could diagnose the cause.  Sadly, the condition often goes unrecognized and untreated when it is very common and reversible by simply following a gluten-free diet.  No medications or surgery are required.

Worldwide nearly 1 in 100 people have the most severe form of gluten sensitivity or intolerance known as Celiac disease though it is estimated that more than 90% are undiagnosed.  Startlingly, many more than this, possibly 10-30% of people of northern European ancestry, have lesser forms of gluten sensitivity that causes symptoms that improve on a gluten free diet.  The low carbohydrate diets have become popular because many have lost weight but they also frequently experienced dramatic improvements in general feeling of well being, increased energy, relief from fibromyalgia, joint aches, improved skin, fewer headaches, and improved digestive symptoms.  However, many fail to gain full benefit because they don’t know they are gluten sensitive and have not completely eliminated gluten from their diet since gluten is present in so many foods that we eat.

Gluten is insulinogenic, meaning it stimulates insulin release, and thereby promotes weight gain.  Abnormal blood sugar regulation also often occurs.  Some people will gain weight despite malabsorbing essential nutrients.  It is now known that more than 10% of insulin dependent diabetics have celiac disease.  What is not yet known is whether the celiac came first or the diabetes, but that they commonly occur together.  Celiac disease is also commonly associated with other autoimmune conditions such as lupus, rheumatoid arthritis and thyroid problems.  Celiac disease is a reversible cause of infertility, low birth weight infants, pre-term labor, and recurrent miscarriages.  Untreated it is associated with a significantly increased risk of numerous cancers including all GI cancers and lymphoma.  It is a common cause of unexplained anemia especially from iron deficiency and causes premature osteoporosis.  Dietary elimination of gluten allows the intestine to heal so that absorption is normalized and symptoms are relieved.  After five years of a gluten-free diet the cancer risk returns to normal as long as the individual remains gluten-free for life.

Classic celiac disease is diagnosed by abnormal blood tests and an abnormal intestinal appearance on biopsy.  Blood tests for celiac disease include antibody tests for gliadin (AGA), the toxic fraction of gluten; endomysial antibodies (EMA); and tissue transglutaminase antibody (tTG).  High antibody levels to EMA and tTG are generally accepted as diagnostic for celiac disease though some individuals with celiac disease and most with lesser degrees of gluten sensitivity may have normal levels.  AGA levels have, in the past, been considered very sensitive but not specific for celiac disease.  Newer assays for AGA antibodies for gluten that has undergone a chemical change called deamidation that appears to be more specific for celiac disease (Gliadin II, Inova) may be as or more accurate than EMA and tTG antibody tests.

However, lesser forms of gluten intolerance may be missed when any of these blood tests are normal or borderline and/or small intestine biopsy is normal or indeterminate.  Stool antibody testing for antigliadin and tTG has been performed in research labs and published in a few studies.  The commercial lab, Enterolab, now offers these tests though the former research gastroenterologist Dr. Ken Fine, who patented the test, has yet to publish the results of his findings in a peer reviewed journal.  His unpublished data and the clinical experience of some of us who have used his test have indicated the tests are, to date, 100% sensitive for celiac disease.  They are highly sensitive for gluten sensitivity of lesser degrees before blood tests or biopsies become abnormal but when symptoms exist.  These symptoms reverse on a gluten-free diet instituted by those with abnormal stool antibody levels.

Small intestine tissue obtained by biopsy during upper gastrointestinal endoscopy has been considered the “gold standard” for the diagnosis of celiac disease since the 1950s.  However, recent studies have demonstrated that some people with gluten sensitivity, especially relatives of celiacs with few or no symptoms, may have changes from gluten injury in the intestine that can only be seen on a small intestine biopsy with special stains not routinely used, or on electron microscopy done in the research setting.  Immunohistochemistry stains can detect increased numbers of specialized white blood cells called lymphocytes in the intestinal lining tips or villi as the earliest sign of gluten induced injury or irritation.  Electron microscopy also reveals very early ultrastructural changes in some individuals when all other tests are normal.  According to published research, when people are offered the option of gluten-free diet based on these abnormalities they have usually responded favorably, whereas those who continued to eat gluten often later developed classic celiac disease.

What these studies suggest is that a “normal small intestine biopsy” may exclude celiac disease as defined by strict criteria but it does not exclude gluten sensitivity, a fact appreciated by many individuals who ultimately started a gluten-free diet based on their symptoms, family history, suggestive blood test or stool antibody test(s).  Those few physicians who appreciate the concept of the spectrum of gluten intolerance or sensitivity are outnumbered by the medical majority that continues to insist on strict criteria for the diagnosis of celiac disease before recommending a gluten-free diet.  Physicians either unfamiliar with the research on celiac or who are holding onto the strict criteria for celiac as the only indication for recommending a gluten free diet unfortunately often leave many gluten sensitive individuals confused or frustrated.  Some seek answers on the Internet or from alternative practitioners.  Many have their diagnosis missed, challenged, or dismissed.  Others are misinformed or receive incomplete information.  As a result many may fail to benefit from the health benefits of a gluten-free diet because they are advised that it is not required because they have normal blood tests and/or normal biopsies.

Another source of confusion lies in the knowledge that certain genetic patterns are present in over 90% of individuals with celiac disease.  Testing for such specific blood type patterns on white blood cells known as HLA DQ2 and DQ8 is increasingly employed to determine if a person carries the gene pattern predisposing to celiac disease.  Some use the absence of these two patterns as a way of excluding the possibility of celiac disease and the need for testing or gluten-free diet.  However, there are rare reports of classic Celiacs who are DQ2 and DQ8 negative.  Moreover, recent studies indicate other DQ patterns may be associated with gluten sensitivity though very unlikely to predispose to classic celiac disease.

Testing for all the DQ patterns has been advocated by Dr. Fine based on his experience with stool antibody testing that has revealed that the other DQ types are associated with elevated levels, symptoms, and positive response to gluten-free diet.  According to his unpublished data, all the DQ types except DQ4 are associated with a risk of intolerance to gluten.  Testing for the DQ types allows a person to determine if they carry one of the two high risk gene types for celiac disease or the other “minor” DQ type associated with gluten sensitivity but low risk for celiac disease.

Enterolab also offers the stool testing for gliadin antibodies and tissue transglutaminase antibodies as well as several other stool tests for food intolerance or colitis.  Though not widely accepted, these tests have gained favor with the lay public as an option for determining sensitivity to gluten or other food proteins, either despite negative blood tests and/or biopsies, or in place of the more invasive tests.  Most recommend the accepted blood tests and small bowel biopsy for confirmation of celiac.  The favorable reports in the lay community have been overwhelmingly positive though they can’t be subjected to peer review by the medical community prior to the publication of Dr. Fine’s data.

Physicians open to the broader problem of gluten sensitivity are reporting these tests helpful in many patients suspected of gluten intolerance with negative blood tests and/or biopsies, though some are not certain how to interpret the tests.  The national celiac organizations have difficulty commenting on their application without published research though a recent article in the British Medical Journal did show stool tests highly specific for celiac.  Dr. Fine’s has publicly commented that his unpublished data demonstrates those with abnormal stool tests indicating gluten sensitivity overwhelmingly respond favorably to a gluten free diet with improvement of symptoms and general quality of life.

There is no agreed-upon definition for gluten sensitivity or intolerance, especially for those who do not meet the strict criteria for celiac disease yet may have abnormal tests and/or symptoms that respond to gluten-free diet.  Those individuals become confused when they realize that because they aren’t diagnosed with celiac disease, they don’t know where to turn for more information.  Consensus in the medical community on definitions and more research in this area are greatly needed.

Celiac.com 06/26/2021 - The USDA healthy eating guide and the Canada food guide have let us down.  They tout foods that are literally poisonous to people with celiac disease and gluten sensitivity, which amounts to at least 12%(1) and perhaps as much as 42%(2) of the population.  And they push dairy products when 2/3 of the world’s adult population is lactose intolerant(3) and this statistic ignores that many others have allergies to dairy proteins.  If our government agencies can be that far wrong, how useful are the rest of their dietary recommendations?  In brief, they are useless to those who wish to promote longevity and good health through diet.  These political documents are little more than reflections of the powerful maneuvering of competing and complimentary industries and economic forces with enormous vested interests in maintaining the status quo in our food supply.  And these forces have been exercising their influence since the very first USDA food guide was published in 1898, when the first Canada Food Guide was published in 1942, and with every subsequent revision of each of these documents.  

The discerning reader will notice that these food guides look more like promotional literature than objective recommendations.  Yet both governmental bodies that issue and support these healthy eating guides firmly insist that they are valuable, science-based instructions for their respective citizens to follow.  Conversely, a massive, long-term study of diet and chronic disease among more than 67,000 female health care workers, conducted at Harvard University over a period of 12 years, has clearly discredited such claims(4).  We can also challenge such claims on a purely logical level.  

From a historical perspective, current nutritional claims from the USDA and Health Canada were first published in 1898 and 1942, respectively.  The minor changes since 1933 in the U.S. and 1942 in Canada have brought little meaningful change.  Thus, this information was first published decades before any modern scientific evidence was available to support or refute these faulty claims.  Surely, once a governmental body has issued such strident ‘healthy eating guides’ they have a vested interest in maintaining the general thrust of their recommendations.  And that is exactly what appears to have happened.  Despite the plethora of discrediting research data, revisions to recommendations from the USDA and Health Canada, over the last 65-75 years, are little more than cosmetic, sometimes offering concessions to special interest groups.  

Examination of relevant, up-to-date medical research shows a preponderance of discrediting evidence for two large food groups endorsed by these food guides—dairy and grain-derived foods.  There is also considerable evidence that debunks the anti-fat bias of these guides.  For instance, one report of a study of almost 20,000 post-menopausal women who followed a low fat diet over a period of 12 years showed that a diet low in fats and high in fruits, vegetables and grains did not significantly reduce the risk of heart disease, stroke, or cardiovascular disease(5).  I will not waste the reader’s time citing and quoting from the many congruent studies.  Neither will I claim that there are no reports that support these guides.  Nonetheless, there can be little doubt that North Americans are becoming more and more obese and are dying of cardiovascular disease and cancers at alarming rates despite our finely honed (and very expensive) medical systems that increase longevity through thwarting deadly injuries and infections.

Our sedentary lifestyle is certainly not helpful, but our diets are abysmal.  Each step we take that brings us closer to the dietary recommendations of our government agencies moves us further away from the healthy lifestyle we seek.  In my own desperation, just prior to my celiac diagnosis, I was eating bran muffins every morning on my doctor’s recommendation and getting sicker and sicker.

Many of us with celiac disease and gluten sensitivity have been forced to re-evaluate food guide recommendations and go in search of meaningful, valid data that will help guide us to a healthier diet.  Yet such individual quests are both inefficient and fraught with hazards.  We need our elected representatives to set aside political and economic concerns and bring the economic clout of their elected offices to bear on this question.  Dietary recommendations need to be based on solid science and examination of the data from both sides of conflicting views.  The one-sided myopic views of special interest groups and those with vested interests in the current dietary guides need to be set aside in favor of a search for genuine answers for those of us who count on our elected leaders to exercise prudent judgment in the guidance they offer us.  

References: 

1. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A.  Does cryptic gluten sensitivity play a part in neurological illness?  Lancet.  1996 Feb 10;347(8998):369-71.
2. Fine, Kenneth.  Personal communication.
3. Sahi T.  Genetics and epidemiology of adult-type hypolactasia.  Scand J Gastroenterol Suppl.  1994;202:7-20.
4. McCullough ML, Feskanich D, Stampfer MJ, Rosner BA, Hu FB, Hunter DJ, Variyam JN, Colditz GA, Willett WC   Adherence to the Dietary Guidelines for Americans and risk of major chronic disease in women.  Am J Clin Nutr.  2000 Nov;72(5):1214-22.
5. Howard BV, Van Horn L, Hsia J, Manson JE, Stefanick ML, Wassertheil-Smoller S, Kuller LH, LaCroix AZ, Langer RD, Lasser NL, Lewis CE, Limacher MC, Margolis KL, Mysiw WJ, Ockene JK, Parker LM, Perri MG, Phillips L, Prentice RL, Robbins J, Rossouw JE, Sarto GE, Schatz IJ, Snetselaar LG, Stevens VJ, Tinker LF, Trevisan M, Vitolins MZ, Anderson GL, Assaf AR, Bassford T, Beresford SA, Black HR, Brunner RL, Brzyski RG, Caan B, Chlebowski RT, Gass M, Granek I, Greenland P, Hays J, Heber D, Heiss G, Hendrix SL, Hubbell FA, Johnson KC, Kotchen JM.  Low-fat dietary pattern and risk of cardiovascular disease: the Women’s Health Initiative Randomized Controlled Dietary Modification Trial.  JAMA.  2006 Feb 8;295(6):655-66.   

Celiac.com 06/18/2021 - Gluten has puzzled me for a long time.  Why does this grain-protein, gluten, make so many people so sick?  I am a professor in pediatrics.  I run the Children’s Gastroenterology and Allergy Clinic in New Zealand.  For over thirty years I have been investigating and looking after children (and their families) who have reactions to food (in other words they have food allergies and food intolerances).  Their symptoms are often due to gluten.  I see a lot of families with celiac disease and gluten sensitivity.

Gluten and Cow’s Milk

The puzzle was this.  Gluten, that sticky protein that makes wheat-flour go all gooey, is well known to make people sick.  But, conventionally, it has been only been implicated as causing celiac disease (that is gut damage of the small bowel caused by gluten).  Consequently, the bunch of symptoms that celiac sufferers experience has been directly attributed to this gut damage (and also to the subsequent nutritional deficiencies).  However, I think that this explanation is too simplistic.

By contrast, in the area of cow’s milk allergy and intolerance, medics recognize that the cow milk proteins can cause a multitude of different problems (such as: diarrhea, vomiting, gastric reflux, colitis, constipation, enteropathy, migraine, rashes, eczema, urticaria and poor growth).  These complaints are instigated by a number of different immunological mechanisms.

My point is this: if cow’s milk can cause a host of different problems, surely gluten can behave in a similar manner.

Gluten—the Culprit

It is my observation that gluten is the culprit for setting off most of the celiac type symptoms.  It does not seem plausible that all of the symptoms experienced by celiac sufferers are caused through a nutritional deficiency or from the damaged gut.  Clearly, with extensive gut damage, there will be significant malabsorption of foods and nutrients with subsequent diarrhea and poor nutrition.  But these are the more extreme cases.  My theory is that gluten harms the nerve network that controls a person’s gut—this brings about gut malfunction, which in turn sets off many symptoms.

The symptoms reported in association with celiac disease vary widely.  Some celiacs, even some with severe gut damage, have few symptoms.  While others, even with their gut fully healed (because they have been on a gluten-free diet), experience extreme symptoms from exposure to small traces of gluten.  Surely, this can only be explained by people having different degrees of sensitivity to gluten, rather than by the extent of their gut damage.

Medical evidence is accumulating that confirms this picture.  To illustrate this, I would like to tell you about the last ten of my gluten patients who I saw this week.  Their names, ages and problems are listed below (see Table 1).
All of these ten children have had a small-bowel biopsy by endoscopy: only three showed the typical celiac gut damage.  All ten children had high IgG-gliadin antibody levels.  All ten children recovered on a gluten-free diet.  In this group, they were all very sensitive to gluten: that is they all get their symptoms back again when they eat even tiny amounts of gluten.

The things we can learn from these children are:

• Only three have celiac disease.  Most, the other seven, can be called “non-celiac gluten-sensitive”.
• Gastric reflux is a common symptom of gluten sensitivity.
• Eczema can be driven by gluten.
• Gluten causes a wide spectrum of symptoms, including celiac disease.
• We need to actively look and test for gluten sensitivity to ever make the diagnosis.
• They were diagnosed by finding a high gluten antibody level in their blood (elevated IgG-gliadin).
• They improved within weeks of going gluten free.
• They found going on the gluten-free diet is quite easy with a little bit of help.
• The children with eczema and reflux can usually come off their medications once they are established on their gluten-free diet.

Gluten—the Diagnosis

I have now diagnosed many hundreds of children and adults with celiac disease and thousands of people with gluten sensitivity.  After seeing all of these patients, I now realize that I cannot distinguish clinically who has celiac disease and who does not.  Therefore, I test everyone!  My mantra is “Test—don’t guess”.  I test both for celiac disease and gluten sensitivity.  

Celiac Disease versus Gluten Sensitivity

Celiac disease:  The story of celiac disease began over a hundred years ago with Samuel Gee describing the “Coeliac Affection”.  Fifty years later, gluten toxicity was first reported in 1950 by Dr W Dickie.  Gluten was subsequently linked to the gut damage a few years later.  With the clinical picture now described, a small bowel biopsy became, within a few years, a mandatory test for the diagnosis of celiac disease.  Nowadays, celiac disease is still considered to be a gut disease which is confirmed by finding the classic microscopic tissue damage called “villus atrophy”.   Over the last eight years the ‘gut damage blood test’ called tTG (tissue TransGlutaminase) has helped make celiac much easier to detect.  About one in a hundred people have celiac disease.  But doctors seem to still be looking for the classic celiac: sick people with bloated tummies and diarrhoea.  However, most people who are getting sick from gluten have subtle symptoms.

Gluten sensitivity: The recognition of adverse reactions to grains also has a long history.  However, blood tests for gluten antibodies have been only available over the last fifteen years.  This has radically changed our understanding of gluten sensitivity.  Population tests have shown that at least ten percent of the population have high levels of gluten antibodies.  (That is the IgG-gliadin antibodies, also called Anti-Gliadin Antibodies.)  “Non-celiac gluten-sensitivity” is now the term used to describe these people who have the clinical manifestations of celiac disease but who have a normal endoscopy and who recover on a gluten-free diet.  Studies are finding that at least one in ten people are gluten-sensitive.

Glutened for 30 Years

Sylvia is 60 years old.  I saw her last week and she told me: “I never realized how bad I was until now that I feel so good!  Yes!  Now I actually realize how bad I was!”

Next, Sylvia said a sad thing: “I didn’t know that I could get a test!  I have been having trouble with my gut for about 30 years and have been suspicious about wheat but I didn’t know I could be tested.  I get symptoms of tummy bloating, headaches, abdominal pains, extreme tiredness, and sometimes I just feel dreadful.  People think that I am a hypochondriac or something because I am so often unwell.”

“It is such a relief at last to be recognized as having gluten sensitivity.  I have been off gluten for the last six weeks.  I am feeling great for the first time ever!  It’s wonderful!”

What a story!  After 30 years of being unwell, Sylvia has discovered that gluten was the cause of it all.  She has non-celiac gluten sensitivity.  The tTG is normal but she has high gluten antibodies.

How do you know if you are being Damaged by Gluten?

Simply, if you (or your child) have any ongoing symptoms, then you should arrange to get your blood tests.  Why?  Because both celiac disease and gluten sensitivity have a very wide range of symptoms.  You can’t tell if you don’t test.  

This article appeared in the Spring 2007 edition of Open Original Shared Link.

Celiac.com 08/29/2007 - The XII International Celiac Disease Symposium, proudly hosted by the Celiac Disease Center at Columbia University, featured presentations from researchers from all over the globe. The last session of the scientific portion of the symposium, entitled “Non-Dietary Therapies”, was full of controversy and fireworks. Talks given by Drs. Khosla, Gray, Paterson, Anderson and Mitea all revealed that potential alternatives to the gluten free diet are now being aggressively pursued. Several groups have even spun off from pharmaceutical companies to raise funds to test these alternatives in patient trials. However, several questions remain. How close are we to a “pill” or “vaccine” to treat or prevent celiac disease? And do we even need, or more importantly, WANT them, given that the diet is safe and effective?

Any alternative therapy for celiac disease must be at least as safe as the gluten-free diet, which, if done correctly, has NO side-effects. So the bar is raised very high. An alternative must offer great medical benefit to celiac patients without causing any medical harm. It is also unclear how, exactly, these new therapies will be implemented. Can they treat existing celiac disease? Will they prevent those at increased risk for the disease (such as siblings) from having symptoms? Will these medications allow celiac patients to ingest as much gluten as they want, or will they just take away the fear of contamination when eating questionable foods? What follows is a summary of several important points raised by some of these speakers in regard to the research that their center is doing in this area of “alternative therapies for celiac disease.

Two groups discussed their research on what has commonly become known as “the celiac pill”. The idea behind the “pill” is somewhat similar to the idea of taking a lactase enzyme supplement to digest the milk sugar lactose (if you are lactose intolerant). However, digesting the proteins that trigger the immune reaction in celiac disease is much more complex than digesting the simple sugar found in dairy products. The small fragments of the gluten proteins from wheat, rye and barley, which stimulate the immune system in someone with celiac disease, contain a large quantity of an amino acid called proline. The stomach and pancreatic enzymes in humans have difficulty digesting the fractions where these prolines are located, making the gluten highly resistant to complete digestion. The idea behind the “celiac pill” is to provide enzymes to break down the gluten into smaller fragments which will not be recognized by a celiac patient’s immune system. Therefore, theoretically, gluten would not cause an immune reaction and could be safely eaten.

Dr. Gary Gray, an adult gastroenterologist working at Stanford University in California, addressed this issue in his presentation “Oral Enzyme Therapy”. Their study looked at 20 biopsy-proven celiacs in remission (without symptoms) who received orange juice with either gluten or gluten pre-treated with a special enzyme (abbreviated PEP, for prolyl endopeptidase). Each patient consumed a low dose of gluten daily, 5 grams, which is equivalent to one slice of bread. The patients completed a daily symptom questionnaire, and had urine and stool tests of to measure intestinal damage. The researchers concluded that pretreatment of gluten with PEP avoided the development of fat or carbohydrate malabsorption in the majority of those patients who, after a 2-week gluten challenge, developed fat or carbohydrate malabsorption. The PEP enzyme needs to be investigated further in larger trials of celiac patients.

Cristina Mitea, working with Dr. Fritz Koning at Leiden University in The Netherlands, also presented some data using similar technology, entitled “Enzymatic degradation of gluten in a GI-tract model”. This group published in 2006 that the above described PEP enzyme may not work optimally in the celiac patient, since it is not active at low stomach pH. The PEP enzyme may also be broken down by pepsin, a digestive enzyme in the stomach, before it reaches the small bowel where gluten causes the most damage. Given these facts, this group of researchers characterized a prolyl endoprotease enzyme, derived from the fungus Aspergillus niger, abbreviated AN-PEP. The AN-PEP enzyme, according to some publications, has been shown to work at stomach pH while resisting pepsin digestion. In the lab, the AN-PEP was able to degrade intact gluten as well as small fragments of gluten, including those that stimulate the immune system in patients with celiac disease. It also appeared to act within minutes, which is 60 times faster than PEP. This is particularly important, as ingested gluten will leave the stomach to enter the small bowel within 1 to 4 hours after being eaten. These researchers state that this enzyme is very stable, and could be produced at low cost at food-grade quality in an industrial setting. However, it has not yet been tested in human clinical studies.

In summary, some of these future potential treatments include:

• The development of genetically detoxified grains
• Oral or intranasal celiac vaccines to induce tolerance
• Inhibitors to the effects of zonulin on intestinal permeability
• Detoxification of immunogenic gliadin peptides (or gluten proteolysis) via oral peptidase supplementation
• Inhibitors of tissue transglutaminase

Dr. Michelle Pietzak, “The Gluten Free MD” is an Assistant Professor of Clinical Pediatrics at the University of Southern California Keck School of Medicine. She sees patients at Childrens Hospital Los Angeles and Los Angeles County Women’s and Children’s Hospital. With New Era Productions, she has recently released an audio celiac disease set as well as a 2 disc DVD set about celiac disease and the gluten free diet, available at Open Original Shared Link.