Dr. Fasano on New Gut & Autoimmune Research, Autism, & Clearing Up the Gluten Confusion with His New Book

Interview by Elisabeth Veltman

Alessio Fasano, MDIt was a true privilege to once again speak with Dr. Alessio Fasano, a pioneer in the research and treatment of celiac disease, other gluten related disorders, and autoimmunity. Dr. Fasano is the Chief of Pediatric Gastroenterology and Nutrition at Massachusetts General Hospital, and is the Director of the Center for Celiac Research, which he founded in 1996. He is also one of the most beloved figures in the gluten-free and celiac community. His passion for his work and his love for people are absolutely palpable. He is tireless and uses a rare combination of science and art in the way he approaches his research. He can break down a very complex subject into picturesque language, and is an absolute joy to interview.

 

THE IMPORTANCE OF DR. FASANO’S RESEARCH

My first interview with Dr. Fasano was in December of 2011, after he and his research team discovered a “new food allergy” called gluten sensitivity in April of that year. During the interview, one of the most interesting and shocking facts he discussed was that no one has the ability to digest “gluten,” a term that was just becoming a household word at the time. In that interview, he offered some of the reasons why so many people are affected by the “gliadin” class of proteins found in gluten-based grains like wheat, rye, barley, and other grains within the grass genus Triticum (read more). Dr. Fasano became recognized around the world when he published a study on the dramatic rise of celiac disease in the 2003 Annals of Medicine, and even before this when he discovered “zonulin”, a protein in the human body that regulates the permeability of the body’s tissues, including the intestine. Zonulin causes the intestinal wall to open and close as required by the body to keep nutrients in and harmful stuff out. Too much zonulin seems to cause the intestinal walls to stay open, allowing other allergens and substances into the body, alerting the immune system, and giving credence to the term, “leaky gut.” This discovery led researchers to an interesting pattern: people in the acute stages of celiac disease have increased zonulin levels. His research links increased zonulin levels to the development of celiac as well as other autoimmune diseases. Additionally, since celiac disease is the only autoimmune disease where a clear trigger (gluten) is known, Dr. Fasano’s research will benefit all autoimmune research, as it will help scientists find the triggers to diseases like type 1 diabetes, multiple sclerosis, and rheumatoid arthritis and could pave the way to a cure.

Read about his new study here: How to predict the onset of celiac disease & how gut bacteria influences autoimmunity.

HIS NEW BOOK

Dr. Fasano has been interviewed and quoted in hundreds of publications including The New York Times, The Washington Post, NPR, Bloomberg News, and the The Los Angeles Times; and has been featured on television on shows like “Good Morning America.”

I was very excited to learn about his new book called, “Gluten Freedom” which was published this week, and authored with the help of writer Susie Flaherty. His book will help dispel some of the myths that have arisen around gluten related disorders. These myths and misunderstandings have caused quite a stir (in other words: argument) in the gluten-free community and in the media, so it will be very interesting to see what Dr. Fasano has to say. The book will also discuss some of the exciting research that he and his team have done and are doing, including studies on the microbiome in the gut and how that protects us from disease, and the gut’s relationship to the brain. The book is available now on amazon.com.

THE INTERVIEW

Our interview helps answer some of the questions and concerns that The Tender Foodie receives from readers about the confusion in celiac diagnosis, the importance of early diagnosis, a new term called “the gluten sensitivity spectrum”, the dangers of cheating on your diet, the relationship between gluten and autism, and the propensity for developing autoimmune disease because of gluten sensitivity or celiac disease. He also gives a few more highlights into the delicious morsels of information that we can find in his book.

Celiac Testing

TENDER FOODIE: When we last spoke two and a half years ago, we discussed how to get tested for celiac disease. You had mentioned that 4 out of 5 markers is the new standard for a celiac diagnosis, and that following this standard might help avoid a biopsy. Has anything changed since then?


DR. FASANO: At that time we were discussing a proposal to the medical community that we change the existing criteria to the 4 out of 5 marker algorithm.

We had decided that we needed to invent an algorithm that addressed patients who were exceptions in the celiac community. In reality, 80% of patients will fulfill the old criteria, but there were many patients who fell through the cracks when it came to diagnosis. One year after we spoke last, this new algorithm (the 4 out of 5 markers) became official in the European community and is now accepted worldwide. The method has been reviewed using an evidence-based method by the medical community at large.

NOTE: The method has been reviewed by: European Society of Pediatric Gastroenterology, Hepatology and Nutrition

TENDER FOODIE: Many of my readers are confused when they hear that the small intestinal biopsy is the “gold standard” for celiac diagnosis. They often ask – can there be a false negative? Can surgeons miss the part of the small intestine that is diseased, and therefore misdiagnose a patient?

DR. FASANO: We don’t call the biopsy the “gold standard” anymore. In fact, it is not the silver standard, nor even the copper standard! One main reason is that someone with celiac disease may have no damage to the small intestine. Not yet.

Two years ago, we didn’t have the strong screening tests that we do now.

NOTE: Watch this page for updates on testing for celiac disease and other food allergies and sensitivities.

TENDER FOODIE: Is celiac disease the only disease that can destroy the small intestine? If not, what else can?

DR. FASANO:  Infections, viruses, and other inflammation can destroy the villi in the small intestine, too. In fact, for some of the people who have it, the AIDS virus can be quite devastating to the small intestine. Radiation from cancer treatments can also destroy the villi in the small intestine.

Young kids can have a list of diseases that can affect the gut, as well, damaging the small intestine, such as Cow’s milk (lactose) intolerance, parasitic infections, rotovirus, and autoimmune enteropathy.

CAN THE SMALL INTESTINE HEAL?

TENDER FOODIE:  You’ve mentioned in past interviews that the small intestine can regenerate itself. Is there ever a point of no return? A point where the small intestine can no longer regenerate?

DR. FASANO: It takes 3-5 days for the small intestine to regenerate itself because within the blood system, we have the capability to continually regenerate. Intestinal cells constantly have to replace themselves, so this is a natural process that continually is happening.

There is no “point of no return.” The regenerative stem cells are in what we call “the crypts.” These are depressions in the small intestine where the stem cells live. These crypts actually expand themselves in people who have untreated celiac in order to create more regenerative cells. The crypts can get overwhelmed with demand in people who have untreated celiac.

In other words, it’s normal to have 100 cells die, and 100 cells regenerate on a regular basis. With celiac disease, cells die early, and stem cells can’t keep up with the regeneration process, so the crypts where the stem cells live expand to try to keep up with the need for new cells.

NOTE: In other words, if a person with celiac disease is not on a gluten-free diet, the crypts keep expanding to try to keep up with the die off of the villi, but cannot, so the destruction of the villi continues, and more damage to the small intestine occurs.

KEY DIFFERENCE BETWEEN CELIAC DISEASE & GLUTEN SENSITIVITY

TENDER FOODIE: In our last interview, you had mentioned that, “We don’t know all of the necessary genes to develop Celiac Disease; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease.”

How common is it to have a negative celiac panel, but a positive biopsy of the small intestine? And simply to clarify again, can you have a diagnosis of celiac disease without the aforementioned genes?

DR. FASANO:  It is very rare to have celiac disease without these genes. That is why we have developed the 4 out of 5 markers. I mentioned before that the biopsy of the small intestine is no longer the gold standard, and can be avoided if the other 4 markers are present. But, if you have symptoms and a positive serology (antibodies are showing up in your blood test) in view of a negative HLA, you cannot avoid a biopsy, because at this point, we don’t know if the patient has gluten sensitivity or celiac disease.  For instance, a negative serology (zero antibodies in the blood) plus symptoms (you get sick from consuming gluten) plus a negative HLA (the DQ2 / DQ8 genes are not present) is most likely gluten sensitivity and not celiac disease.

TENDER FOODIE: What about antibodies to the small intestine itself?

DR. FASANO: Positive or negative serology is just a test for the autoantibodies against tTG. There is an anti-enterocyte antibody test that is available that measures antibodies against your small intestine. However, it is not routinely performed and not widely available in labs. This condition is extremely rare.

CAN YOU CHEAT ON YOUR GLUTEN-FREE DIET?

TENDER FOODIE: Here is one of the most common questions that I receive often. Some readers who have been diagnosed with gluten sensitivity and even those with celiac disease have mentioned that they “cheat” on their diets and once in a while eat their favorite gluten-filled foods.  I always shudder when I hear this. Can you tell us the rules on diet for both celiac and gluten sensitivity?

DR. FASANO: For people with celiac disease, cheating is an absolute NO-NO. it is like diabetes. If a diabetic skips insulin he/she will be in big trouble. The same for those with celiac disease, cheating is not an option.

For people with gluten sensitivity, we don’t know yet what cheating will do to the body. People appear to have different thresholds. Some people who are gluten sensitive (not celiac) can’t tolerate even a trace of gluten. Others people with gluten sensitivity (again, not celiac) can tolerate it occasionally. There appears to be a spectrum of tolerance for those with gluten sensitivity, so, unlike celiac, you need to be as strict as your body requires.


TENDER FOODIE: There are a lot of mom’s with celiac disease or with the disease in their families who would like to know if gluten can be transferred through breast milk?

DR. FASANO: Yes, gluten can be transferred via breast milk.

CELIAC, GLUTEN SENSITIVITY  & OTHER AUTOIMMUNE DISEASES

TENDER FOODIE: Can you develop other autoimmune diseases either from untreated celiac disease or untreated gluten sensitivity?   Also, have researchers gathered the statistics on whether or not DQ8 celiacs have a greater number of other autoimmune diseases than DQ2 or vice versa?

DR. FASANO: There are two schools of thought. Here are a couple of examples.

The first school says that if you have X number of genes that put you at risk for celiac, but are also born with Y # of genes for Hashimotos (a thyroid condition), for instance, then you are likely to get Hashimotos.

The 2nd school of thought says that untreated celiac disease leads to other autoimmune diseases, but you might reduce this risk of other autoimmune diseases if the celiac disease is caught early.

TENDER FOODIE: Do the celiac genes need to be expressed or triggered in order to develop other autoimmune diseases?

DR. FASANO: Here is another way to put it: Again, if you develop celiac disease and have complications from other autoimmune disorders, by default the celiac genes are expressed. So if you believe that other autoimmune disorders are due to untreated celiac disease, the answer would be yes, the genes must be triggered.

Here are some of the statistics for those with celiac disease who are at risk for other types of autoimmune diseases: 

15/20% of celiacs are at risk for Hashimotos (A thyroid disease)
7-10%  of celiacs are at risk for Diabetes
5% at risk for Auto Immune Hepatities Herpetiformas (A serious skin rash)
2-3% at risk for Sjögren's syndrome

For both of these schools of thought, you can’t make a celiac diagnosis without discovering intestinal damage. However, progressive thinkers say it doesn’t matter if the celiac is activated, or if the intestines are damaged or not, the person still could have celiac disease now and damage later in life. We need a third option where a diagnosis should come before the onset of celiac disease. We are more focused on prevention now than we have been in the past.

A study of children under the age of 2 in Sweden showed that the intestines of the celiac children who went on a gluten-free diet went back to normal, but those who were untreated -- almost all of these kids’ intestines had damage. The study suggests that there is an opportunity for early prevention because of early diagnosis.

Read about Dr. Fasano's new study on early diagnosis.

TENDER FOODIE: What about gluten sensitivity? Is that a precursor to autoimmune disease as well?

DR. FASANO: Gluten sensitivity is not an autoimmune disease, but I would not be shocked if we eventually find a link between it and autoimmune diseases.

NOTE: After the interview I followed up on this statement, "I would not be shocked to find a link between gluten sensitivity and autoimmune disease", as it is quite a powerful one, to confirm that this was exactly what he said. Dr. Fasano verified this statement.

WHAT IF YOU DON’T GET BETTER ON A GLUTEN-FREE DIET?

TENDER FOODIE: There are some people with celiac disease who do not seem to get better even when strictly adhering to a gluten-free diet. Could you talk about why?

DR. FASANO: Yes. There are some people who don’t respond to a gluten-free diet. This is a condition called Refractory Sprue. Refractory Sprue is defined by a persistent or recurrent malabsorptive symptoms and villous atrophy despite strict adherence to a gluten-free diet*. Most people with celiac disease do well on a gluten-free diet, but this is a small group who does not respond to strict adherence to it, and continue to have gut damage and symptoms. The immune system doesn’t even need to be instigated by gluten anymore in these patients. We also refer to these patients as “non-responsive celiacs” and this condition needs to be studied more carefully.

NOTE: In plain language, “malabsorption” refers to the inability of the small intestine to absorb nutrients because of damage to the villi. “Villous atrophy” simply means that the part of the small intestine that absorbs the nutrients (the intestinal villi) is being eroded or destroyed.

TENDER FOODIE: I’ve heard that you have a new diet that is successful for non-responsive celiac patients?

DR. FASANO: Yes! It’s called the Fasano Diet, although I wish they didn’t call it that!


TENDER FOODIE:  Why not?

DR. FASANO: Oh, it was a team effort. It is a diet for everyone and not for me!


TENDER FOODIE: That’s funny, I love it! Tell me a little about this Fasano diet.

DR. FASANO: The patient is on the diet for 3-6 months only so that the immune system can have time to recalibrate itself, and calm down.


TENDER FOODIE: is this similar to GAPS or the Specific Carbohydrate Diet? And what is your opinion on these diets?

DR. FASANO: I don’t have an opinion either way on these diets. The bottom line is to be in favor of the quality of life of the patient. The difference is that the diet we’ve created allows all fish, vegetables, olive oil, and only one grain: rice.  Rice is the only grain that is completely gluten-free. We are going back to the way our grand parents used to eat, and the ingredients allowed in the diet are all whole, unprocessed foods that are naturally gluten-free.

INFLAMMATION, GLUTEN SENSITIVITY & THE THYROID, GALLBLADDER & BRAIN

TENDER FOODIE: How does inflammation factor into the immune response for gluten sensitivity? Can you review how this works for readers who do not have celiac, but are reacting to gluten?

DR. FASANO: You need to make a clear distinction between celiac disease and the immune system’s attack on other tissues, like the thyroid. Gluten (or more specifically, “gliadin”) is inflammatory because it cannot be digested by any human (read more here). If gluten is ingested, it causes a leaky gut**. If the gut doesn’t heal after ingestion of the gluten, it starts a war that has collateral damage of some kind. If that war is confined to the intestine, then the distress is in the function of the intestine.

However, sometimes the immune cells, or the soldiers in the war, leave the intestine and then attack other types of tissues, like those in the gallbladder, thyroid, and brain. Inflammation because of gluten can even be a factor in diseases like autism and schizophrenia.

NOTE: "Leaky Gut" is where too much zonulin (see first paragraph) actually opens the normally tight junctures of the small intestine letting undigested particles that are too large to be absorbed properly, into the system.

GLUTEN & AUTISM

TENDER FOODIE: Many people ask about a gluten-free diet for kids with autism.  Since we are on that subject, can you address the effectiveness of a gluten-free diet as a tactic?

DR. FASANO: This is a controversial field and has been looked at by researchers for many years. The paradigm of celiac and autism does not really fit: there is another Swedish study has found no link between celiac disease and autism. However, there may be other types of gluten reactions that could be at play. We don’t know whether this is part of the general rise in gluten sensitivity throughout the population, or not. The real issue is that autism is very complex. Researchers are starting to accept that autism can have different causes, including genes, toxins, vaccines, or food intolerance like gluten sensitivity. There is no single magic bullet, and the approach to each case must be customized. Twenty out of 100 autistic kids respond to a gluten-free diet, but if you can identify the cause and the triggers of any complex disease, and isolate the biomarkers associated, this is a much better approach. We are just scratching the surface, but this gives us a lot of food for thought.


TENDER FOODIE: This is really fascinating and very helpful, thank you. I have to ask, although I know you don’t have all of the answers to this as this is not specifically part of your research, I’d love your opinion. Have you found any link between the “new” pesticide producing GMO’s and the rise of gluten-related disorders?

DR. FASANO: We don’t know enough to make that determination. But I don’t think they are driving the rise in celiac disease because celiac disease has increased dramatically in many countries, including the European countries who ban these GMO’s. We still have not found the cause of the rise in gluten-related disorders.

NOTE: After our interview, I ran across a proposal for a study from research scientists at the Massachusetts Institute of Technology (MIT). This was forwarded to Dr. Fasano’s team for comment at a later date, should it be appropriate.
 
STUDY ABSTRACT (PARTIAL): Europe provides disturbing confirmation that glyphosate residues are prevalent in the Western diet (Hoppe, 2013). This study involved exclusively city dwellers, who are unlikely to be exposed to glyphosate except through food sources. Despite Europe’s more aggressive campaign against GMO foods than that in the Americas, 44% of the urine samples contained quantifiable amounts of glyphosate. Diet seems to be the main source of exposure. One can predict that, if a study were undertaken in the U.S., the percentage of the affected population would be much larger.

Source: http://www.intertox.sav.sk/ITX_pdf/06_04_2013/10102-Volume6_Issue_4-01_paper.pdf

MORE ON THE BOOK & NEW RESEARCH

TENDER FOODIE: Let’s talk about your book. Will you tell us a little more about it and why you wrote it?

DR. FASANO: Yes! We are very excited. The book summarizes our seventeen years of experience in research and how we’ve had to shift the paradigm. At first, no one was interested. Now, the subjects of gluten and celiac disease are very popular, and the facts are getting distorted. The book will help dispel some myths and clarify the facts, as we know them now.


TENDER FOODIE:  What is some of the newest research that people can find in the book?

DR. FASANO: There is an entire section devoted to the brain. We’ve learned so much about the brain in recent years that is very interesting. We’ve also done new research on the gut and the microbiome and the cross talk between our genes and the gut bacteria. We may be born with a certain gene for a particular disease, but our gut bacteria may influence whether or not that gene gets triggered. We would like to see if we are able to locate a single biomarker before the gene gets triggered, and therefore prevent the disease from occurring. We published a paper on this, I'll have someone send it to you, it is a very ground breaking area of research.

Here is the paper: Pathophysiology of the Intestinal Paracellular Pathway

TENDER FOODIE: Oh terrific, thank you. And thank you so very much for working through these reader questions with me, Dr. Fasano. It has been such a privilege to be able to speak to you again.

DR. FASANO:  You are most welcome.

MORE FROM DR. FASANO

If you would like to learn more about Dr. Fasano's work, here are a few other great articles that you will enjoy and find very educational.

RHR: Pioneering Researcher Alessio Fasano M.D. on Gluten, Autoimmunity & Leaky Gut, by Chris Kresser

Dr. Fasano's Guidance on Probiotics from Autism Speaks

And here are the other interviews that I did with Dr. Fasano on Tender Foodie in 2011:

Should Anyone Eat Gluten?

How To Get Tested for Celiac Disease

Gluten Sensitivity, A New Food Allergy

A special thanks to Susie Flaherty for her help in getting the details necessary for these interviews. You are greatly appreciated!

About the Author of This Article

 Writer, owner of Blue Pearl Strategies, and lover of all culinary delights, Elisabeth started The Tender Palate & Tender Foodie, for people with food allergies, sensitivities and intolerance. She believes that everyone should live deliciously and have a healthy seat at the table.

Opinons on Food Allergies in Schools. Journalism or Narcissim?

The Reason for the Rant

I don't often rant or use this blog for that purpose. I feel that there is enough "opinion" out there. Uninformed opinion that is geared to gain attention and attract traffic. What the world needs now, is not ranting, but sound information that we can use, and that is what I strive to do.

However, there have been several opinion pieces about food allergies recently that deserve a response. The piece that spurred me to rant today was posted in the Huffington Post Blog (click link to read the article) yesterday by an author who is very upset. Her daughter can't have a birthday cake in school because of "those" kids with food allergies. The author herself has an egg white allergy, and when she was a child she knew a peanut-allergic girl who had died from eating a Twix candy bar containing traces of peanuts. She acknowleges the "skyrocketing number of food allergies and intolerances" (then proceeds to improperly diagnose), yet, she still believes that what works for her, an adult, and what worked for food allergic kids when she was growing up, should still work for kids today.

• Even though the number of people with allergies, sensitivities, and celiac disease have skyrocketed, gotten more complex, and the reactions more varied and sometimes more severe.
• Even though many kids could have damaged intestines from celiac, tummy aches, headaches, flu-like symptoms, long-term complications... and that we should care about this suffering as well.
• Even though some kids are so sensitive that having allergens in the air could cause a reaction.
• Even though kids are dying from anaphylaxis at such a rate that state governements are enacting laws for schools to allow trained personnel to use emergency autoinjectors.
• Even though the CDC just released a guide for schools to help them naviagate this complex problem.
• Even though life threatening food allergies and celiac disease are considered a disability by the American with Disabilities Act, section 504
  
• Even though 25% of emergency epinephrine injections given in schools involved kids who did not know they had an allergy at the time and that more than 15% of school-aged children with food allergies have had a reaction in school.
• Even though what worked when the author was growing up did not work very well. A little girl died.

The complete lack of compassion in this article is what spurred me to respond to the post, and also post it here, because I know that this author is not alone in her frustration. Sometimes a person can become so annoyed with day-to-day circumstances that they don't realize that they are being a real jerk. It's OK to be frustrated, it is a frustrating problem to have the basic needs and joys like food banned in schools, and we should listen to those who are frustrated. But sometimes people don't think beyond their emotion to realize that there is a lot more research to be done before drawing such an opinionated conclusion in public. I'm hoping that this is the case for this author, and I'm hoping that my passionate response to the article will help educate others who might feel the way that she does. I hope that this exchange will spur this discussion about food in schools to a much, much higher level.

A friend of this blog said it best: A school is a place of learning. This parent is missing a wonderful, teachable moment of putting others' needs first, and she is placing her convenience over the needs of a child. Another Tender Friend who has no food issues in her family offered that there are many, creative ways to celebrate a birthday, like bubbles and silly string (although these would have to be checked for allergens, too). On that wonderful creative note - what about taking silly pictures with your classmates? Writing a poem to celebrate the birthday boy or girl? These are things that can have a lasting, positive impression for everyone in class. These are activities that teach real emotional, mental and physical skills as well as celebrate the occasion. What a wonderful thing to walk away from your birthday celebration with such solid memories to keep for years to come. What joy!

Further, what a wonderful thing to think beyond ourselves, since this often spurs us to some of our most creative thinking! I personally can't stand seeing even one little kid feeling ostracized or alone because of quirks, religious orientation, race, creed, disability, family problems, or food issues - especially when just a little creative thinking and care can help grow loving and confident kids who feel like they belong.

This is a world community problem and a local community problem. It isn't about you. It isn't about me. It's about taking care of each other, caring for each other, and solving a very, very tough problem together.

So here is my rant. Feel free to rant back.

"While I empathize with the author's frustration, I think it is unwise to post an article in such a public forum based solely upon opinion, and personal experience, feelings and frustration; and without proper journalistic research. This article doesn't take into account the incredible rise in serious allergies, the rise in deaths from the same, the rise in other types of food reactions that kids are having to multiple foods. It also has no sympathy or regard for the kid that might have intestinal damage because of celiac disease, or flu like symptoms or a tummy ache because of sensitivities or slow onset allergies. It also discusses children as if they were adults, capable of making the same type of rational, spur of the moment decisions necessary to turn down that brownie. Kids don't know brownies are made w/ egg. Kids also are very physical - they kiss, hug, tumble, throw or even spit food in play. I empathize more with schools who have to figure out what is safe for their students and what is appropriate action to take so that each child is cared for, than with parents who no longer can make cupcakes. And I love cupcakes. I empathize with the parents of FA kids who put their kids into the hands of uneducated people every day. The kindest of people can make a mistake, and that is the sad part of this all. No one intends to harm with food. Food should be good for us and delicious and enjoyable. But the reality is that millions of people are having several different types of immune reactions to it. So something is wrong.

We are a community, and this is a community problem. We can't take the narcissistic position of, "I"m sick of this" and serve the solution to this growing problem appropriately."

Sincerely,

Elisabeth Veltman

The Tender Foodie

Learn more about this subject

What is a Food Allergy, Anyway?  A list of food reactions and what they mean.

The CDC Guide for Managing Food Allergies in Schools:  an excellent guide for schools and parents.

Emergency Auto-Injector Law Has Passed

How Can Parents Feel Less Stress with a Food Allergic Child in School?: Interview with Melanie Potock, MA, CCC-SLP, of www.mymunchbug.com

Be True to Your Heart, Dear Celiac: an excellent post by Brandy Wendler, RN, MSN, ACNP-BC, spokesperson for celiac disease and heart disease, and Ms. Northwest Territories Intl.

Still More ...

Should Anyone Eat Gluten? (Part 1) Interview with world-renowned researcher, Alessio Fasano, MD

How to Get Tested For Celiac Disease (Part 2) Interview with world-renowned researcher, Alessio Fasano, MD

Gluten Sensitivity, a New Food "Allergy" (Part 3) Interview with world-renowned researcher, Alessio Fasano, MD

Other Responses to This Article

Food Allergies in the Classroom: Using Science and Empathy to Drive Your Cupcake Decisions
  by Sheela Raja, PhD in the Huffington Post, Feb. 24, 2014

Released Today: The CDC Guide to Managing Food Allergies in Schools

Today,October 30, 2013, the Centers for Disease Control & Prevention (CDC) published “Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs." It is the first national comprehensive guidelines to help schools manage food allergies in their facilities and with their students.

This guide was created for schools, but I think every parent should download it and read it. It will help parents with food allergic kids understand what you can expect from schools, and also help parents of kids who have no food allergies understand why these regulations are in place. It might even help a parent save a kids life.

A Quick Snapshot of the Guide

The guide was created with the help of a team of experts, including federal agencies with the expertise in food allergies, consumer organizations who give advice on the clinical management of food allergies (like FARE and The American Academy of Pediatrics), organizations who represnt professional groups who work in schools, like school nurses.  They also worked with one school district, one state education agency, and two parents of food allergic kids.

The guide also takes into account the emotional needs & symptoms of food allergic kids, as well as guidelines on how to deal with bullying. Emotional needs are important, as well, since "the peanut table" can be a very lonely experience, as can be being forced to eat in the nurse's or principle's office.

The guide describes the symptoms of a classic allergic reaction, and how to recognize it as such from a clinical perspective, including mental and emotional symptoms. A child, for instance might have a sudden mood change or have a "sense of impending doom." I've certainly experienced this as part of a food allergy reaction, and I'm super glad that they included emotional symptoms in the guide.

The guide also gives examples of how a kid might describe a classic allergic reaction (one that might result in anaphylaxis). Here are a few examples:

• It feels like something is poking my tongue.
• There’s a frog in my throat; there’s something
• stuck in my throat.
• My tongue feels full (or heavy).
• My lips feel tight.
• It feels like there are bugs in there
• (to describe itchy ears).

A very important component of the guide is the strategic planning and framework section. It helps the schools set up a system for the school so they can properly and quickly respond to an emergency, and document any emergency, so they can learn from any incident that might occur. This includes guidelines on professional development and training for any staff who has frequent contact with food allergic kids.

It also sets up a system for each child to help prevent and reduce the risk of any emergency, including child/parent education. How many times have we heard that a parent didn't realize that their food allergy posed such a risk for their child? The parent didn't learn from the doctor who diagnosed the child, but learned from an emergency room visit?

There are several sections that describe how to put these guidelines into practice, including checklists and recommended practices from the cafeteria to the bus, to field trips, to outside groups who use the school. 

Finally, the guide gives a clear description on the Laws that govern food allergies:

• Section 504 of the Rehabilitation Act of 1973 (Section 504)
• the Americans with Disabilities Act of 1990 (ADA)h
• Governing Statutes and Regulation for U.S. Department of Agriculture’s (USDA) Child Nutrition Programs (CNPs)
• Individuals with Disabilities Education Act (IDEA)
• Family Educational Rights and Privacy Act (FERPA) of 1974

...and a very comprehensive list of federal resourses to help schools and individuals find and understand the laws.  These are listed at the end.

This is an incredible resource with a great deal of information, that is very well organized. 

Download it here:  Voluntary Guidelines for Managing Food Allergies in Schools and Early Care and Education Programs.

You can also read more about this, and find other resources on the FARE website.

Symptoms of Celiac Disease & Some Guides to Help

This is a great infographic of some of the major symptoms of celiac disease. The graphic is put together by The Gluten Dude, who has some interesting stuff on his site. If these symptoms ring true for you, look below the graphic for a few more articles that might help you figure this out with your doctor.

Celiac Disease Symptoms – Courtesy of Gluten Dude

Guides to Why & What to Do - Discuss with You Doctor

Interview with Alessio Fasano Part I: Should Anyone Eat Gluten?

Interview with Alessio Fasano Part II: How to Get Tested for Celiac Disease

Interview with Alessio Fasano Part III: Gluten Sensitivity

What is a Food Allergy, Anyway?

Follow Your Gut (Part 1): What's Eating My Daughter's Stomach?

Follow Your Gut (Part 2): Going Through a Celiac Biopsy

There is also something called "silent celiac" which can happen in some people who are asymptomatic but who have celiac disease. I hope this helps any of you who are trying to get to the bottom of some crazy stuff!

The Most Surprising Places for Hidden Gluten

 

The Way We've "Always" Done It

For years, food processors have gotten used to procuring, milling, making, packaging, and shipping our food in a certain way.  Marketing, science, operations have all jumped on board to make modern processes more efficient, food more "palatable" (sometimes more addictive), and shelf- and shipping- life longer. 

Progress.  It's a natural human response to ... progress.  However, in solving our business problems, we've forgotten the human equation. That wonderful, natural symbiosis of land, plant, animal, atmosphere, mind, body, and spirit is lost in the needs of mass production. It isn't the way we've "always done it".  It's new, and what affects our food supply affects us.

Take gluten, for instance.  Sometimes it's simply how something is made - with wheat, rye, or barley.  But often, we've added gluten as a thickener and a preservative.  We've floured our gargantuan machines with it so the coffee beans don't stick. We process wheat products along with other foods that have nothing to do with grain.  We've increased (genetically engineered) by 14% the protein content of gliadin, one of the proteins in the gluten grains we farm without realizing that human beings don't have the enzyme to digest it.  It's true. 

Read what a leading expert says about this.

So here we are, the food consumer, with health problems. Celiac disease has increased 4-fold (at least) within the last 50 years, and 90% don't know they have it.  A new food allergy called "gluten sensitivity" is affecting over 25 million people. Gluten is thought to trigger behavioral issues and increase symptoms of many other diseases.  There are several credible theories as to why, and all of them probably hold a great deal of water.  One of these theories is that we have more gluten in our food than our bodies can handle.

I use this list in different talks that I give to help illustrate the surprising places you can find a significant amount of gluten. Significant, meaning, it will make you sick. People ask me to put this list on the blog, so here you go.  I'll keep adding to the list and put it on a more permanently accessible place on the site as well.  In the end, it all comes down to reading the label and knowing your brands... and listening to you intuition and your body, as well as to the experts.

Read more about the labeling differences between the USDA & the FDA. 

The Surprising List

Add your own in the comments section and help other Tenders out! 

• Chicken/Beef/Vegetable Broth (thickener) - Make your own, see beef broth recipe here... and chicken broth/general recipe here.
• The Bulk Bin: any item that you find in bulk has a high risk of cross contamination - either during processing before it reaches the store, or at the store, as customers use, mix, and re-use the scoops.
• Tomato Paste & Condiments like catsup and mustard (thickener) - I like Annie's ketchup & mustards
  
• Soy Sauce (ingredient - get gluten-free tamari (like San-J), or gluten-free soy, or gluten-free coconut aminos, like Coconut Secret)
• Nuts (if processed w/ grains.  Blue Diamond almonds are generally accepted in the GF community as gluten-free)
• Dried Fruit (often processed w/ grains - I LOVE Made In Nature dried fruits)
• Flax/chia seeds (often processed w/ grains)
• Corn flour, tortilla, corn chips (often processed w/ grains.... flour cross contaminates easily and abundantly in factories)
• Rice Noodles (can be processed w/ gluten grains)
• Potato Puffs (sometimes coated with corn flour that can be processed with gluten)
• Hot dogs/ Bratwurst (as a filler)
• Processed hamburger patties (as a filler)
• Coffee (large processors often use a gluten-containing white powder to flour their machines, although this practice is changing, processors aren't talking...  get to know your local roasters.  Smaller roasters do not need this powder - read more here.)
• Commercial chicken & turkey (some use gluten solution as a "plumper")
• Cold Cuts (as a filler)
• Oats (processed w/ gluten grains... also some people react to a compound in oats... if you can eat them, get gluten-free oats)
• Pickles & Olives (malt vinegar is often made from barley)
• Smoke Flavoring (often derived from barley malt, or other gluten-grains)
• Caramel Coloring (can be derived from barley, although in the U.S. it is usually derived from corn - read the label, but it is best to be safe and avoid caramel coloring)
• Vanilla and all other extracts (distilled, grain-based alcohols are used in extracts... some people do react to distlled grain alcohols and vinegars. Also, some extracts contain caramel coloring derived from barley)
• Spices - especially spice blends (McCormick pure spices are gluten-free and generally accepted by the GF community.  McCormick spice blends, however, can contain gluten ingredients - so read your labels)
• MSG: read more about MSG here.
  
• Salad dressing - often contains gluten as a thickener and/or has grain-derived vinegars (malt vinegar especially). Many react to wheat/barley derived vinegars.
  
  
• Flavored potato chips (some non-flavored potato chips) - double check the label of anything that has a flavor coating or additive
• Low Fat Dairy: yep, can be thickened with gluten.
• Bacon: if it is made w/ smoke flavoring, the flavoring can be derived from various sources of gluten (including barley, and brewer's yeast. Brewer's yeast is a by product of beer.)  A clue to safe bacon is that which is local, apple or hickory smoked - but call the manufacturer to double check.
  
  
• Personal Care Products & Toothpaste: Read more here
• Mouthwath
  
• Toothpaste & Flavored Dental Floss: Many toothpastes contain gluten, but there are gluten-free toothpastes, like Desert Essence, which I love. Minted or flavored dental floss are suspected of containing gluten as well, and I'm researching this further as it became clear that I was reacting to something in it. Unflavored is a much safer bet.  Here is a list of companies that are starting to claim a gluten-free status:
  • Oral B Dental Floss
  • Oral B Stages Toothpaste (does not say anything about other toothpaste lines)
• Dental gloves,  Polishing paste, Flouride, Topical Anesthetic: The gloves that your dentist uses? Make sure they are not powdered. They can be powdered wtih starch, usually starch that contains wheat or could be corn starch cross contaminated. Gluten is hiding in many common dental products, such as toothpaste and the flavored polishing paste, topical anesthetic and even the fluoride commonly used in many dentist offices. Check with your dentist before your next visit to see if they know if the products they use include gluten - it might not appear in the ingredients, since by law it does not have to. If they aren't able to or won't properly research the ingredients, ask for alternatives (or find a new dentist).
• Orthodontic Retainers & Dentures:  Really. Some plastics (many, actually) are made with gluten.  Read more.
• Surgical Implants: Intra-ocular implants to replace the lens in the eye, bone cement, dental implants, are often made from Poly(methyl methacrylate) (PMMA), and this substance can contain gluten. So have your surgeon double check that the materials they are using for any implants do not contain gluten.
• Cosmetic Surgery: fluids used to reduce the appearance of wrinkles or scars can also be made from PMMA, which can contain gluten. Check w/ your surgeon/doctor to be sure they are able to use a non-gluten material.
• Beauty Products: Read more here
  
• Medications & Supplement:  Read more here
• Cough Syrups
  
• Envelope glue UPDATE: Dr. Alessio Fasano had his team investigate this in his book, Gluten Freedom, and found that envelope glue does not contain gluten, but is corn starch-based (so if you are allergic to corn, take note.) This is according to the Envelope Manufacturers Association based in Alexandria, Virginia.
• Powdered / Confectioners Sugar: many (if not most) powdered sugars are mixed with a wheat or corn-based starch (and corn starch can also be cross contamintaed with gluten).
• Charcoal Briquets: Becky, from a local Celiac Support Center here in Grand Rapids, let me know about this. Many charcoals have a form of starch, usually wheat-based (but also could be corn, rice, or potato), that holds the charcaol in the briquette form, and allows a controlled burn. There is a risk that the gluten from the briquette could be inhaled, as well as get on the food cooked over it and digested. Your best bet is to use an all wood charcoal (lump charcoal) that can be found at major hardware stores chains and some grocery stores.
• Laundry Detergent
• Window Cleaner
• Kitty Litter (esp. the "natural" kind)
• Playdoh - & molding clays: contain wheat and can cross contaminate on hands, and easily get into a child's mouth or eyes from the hands.

A Note on Distilled Alcohols & Vinegars

There is a debate in the gluten-free community upon whether or not distillation removes all of the proteins from a grain-based alcohol or vinegar.  There are respected leaders in the community that say that all distillation removes all gluten proteins so that all vinegars, spirits, and alcohols are "safe" for the gluten-free, even if derived from a grain.  I have a great deal of respect for the research these leaders have done, but I've never heard them say, "we've tested this and the protein content is zilch."  I've also heard them say, "if you are really sensitive to gluten, like an allergy, then avoid gluten-based alcohols."  This is very confusing. Also, there are food processors, who pay close attention to the vinegars in mustard, for instance, and I wonder, if they are testing and using non-gluten vinegars and alcohols, why others do not.  These processors either test for the presence of gluten, or use vinegars that are derived from non-gluten sources.

I've also seen and received comments that gluten-free Tender Foodies DO REACT to distilled vinegars, spirits, and alcohols that are dervied from grains, but DO NOT react to vodkas, for instance, that are purely derived from potato; or to pure rum, or to pure tequilla (for example).  I am one of them, and it took me a long time, and great discomfot before I figured this out. There are many reasons to react to alcohol (yeast, sulfites, just plain drinking too much etc), but grains could be one of those reasons, and to me, experimenting is not worth the risk. There are some great, non-grain options out there, and even some beer that has been tested for gluten, but dervied from barley.  Confusing?  Yep. So the questions, creativity and debate continues. Please pay attention to your body and intuition as much as you do labels and experts.

I'll be doing more research on this and may come up with my tail between my legs.  However, I would like you to be aware of your options and possible pitfalls; and throw your opinonated hat in the ring in the comments below!  I'd love to hear about your experience. 

Do you react to distilled, gluten-based alcohols?

What are some of the most surprising place where you have found gluten?