Event: Poof! An Allergic World. Why? How? What We Can Do.

Event Topic

Food allergies seem to have magically appeared out of nowhere.  Twenty years ago, finding an actual kid with peanut allergies was like searching for Sasquatch.  We had heard that this kid exists, but sightings were few and far between.  Today, peanuts are banned from airplanes and schools, and kids are wearing labels on their clothing like little air-mailed packages, marked “fragile”.  “Gluten” is a household word, but we still don’t know what it is. Adults leave their doctor with lists of foods to avoid, even developing celiac disease and other autoimmune conditions in their 40’s, 50’s, 60’s & 70’s. 

Why?  What has happened?  Is there something we can do?

Join The Tender Foodie, for some interesting fact, figures, and discussion.  Elisabeth will review the impact of our food environment, the difference between “allergy”, “sensitivity”, & “intolerance”; cross-reactions & why there is no such thing as a gluten-free pizza.  You will leave armed with a few positive changes you can make in your every day life.

FREE.   CALL TO REGISTER: (616) 447-9902

About Elisabeth Veltman

Elisabeth owns The Tender Foodie, a blog to help shorten the food allergy learning curve through a community of experts – including chefs, bakers, doctors, nutritionists, counselors, researchers, fitness professionals, and more. The Tender Palate will become an interactive website with tools to help people manage their food and health more successfully.

Very pleased and excited to also have Leslie Berigan R.N., one of the nurse educators from Grand Rapids Allergy on hand to answer specific IgE and EpiPen related questions after the talk.  Welcome Leslie! 

Organic? All Natural? GMO’s? What’s Happening to Our Food?

As seen in Women's Lifestyle Magazine's April 2012 Edition.  Read the Full Magazine.

Photo Courtesy of Women's Lifestyle Magazine

It's Not Just About Food Allergens Anymore

When you become a Tender Foodie, you start to read labels.  As entertaining as this sounds, it is a necessary and regular exercise that helps keep people with food allergies safe.  Labeling gives us important information, and it helps build trust with manufacturers.  But as you apply this label-reading practice to your daily life, you begin to see how essential each ingredient is to your overall health.  It is as important to read what’s ON the label as it is to understand what is NOT on the label.  ‬

‪In this article, I’ll help decipher some of the labels you see every day, and then outline important events that are happening off- label, so you can better understand your choices.  It isn’t just about food allergens anymore. ‬

‪ORGANIC LABELING‬

Organic is a labeling term that indicates that the food or other agricultural product has been produced through approved methods that integrate cultural, biological, and mechanical practices that foster cycling of resources, promote ecological balance, and conserve biodiversity. Synthetic fertilizers, sewage sludge, irradiation, and genetic engineering may not be used.

‪~USDA National Organic Program‬

‪The label “Organic” is important for the many reasons stated in the above quote.  One of the most important issues of our time, however, is that it’s one of the only ways to know that your products do not contain Genetically Modified Organisms (GMOs).  You could also get to know your farmers and vineyard owners, learn about their practices, and trust them.  It’s not scientific, but there are responsible farmers out there who grow organically, even bio-dynamically (above and beyond organic), but who do not use the USDA certification process.  We’ll get into GMOs in the next section.  ‬

‪First, let’s roll up our sleeves, get out our magic decoder rings, and review organic labeling.  ‬

‪“100% Organic” / USDA Certified Organic Seal‬

‪Only manufacturers who have met the USDA requirements and who have been certified by a licensed agent may use this claim and use the USDA Certified Organic Seal.  All agricultural aids and processing agents must be 100% organic, must not be irradiated, and may not contain GMOs, or anything (including chemicals) from the National List of Prohibited Substances.  ‬

‪“Organic” / USDA Certified Organic Seal‬

‪At least 95% of the product must be composed of certified organic agricultural products.  The remaining 5% must consist of organically produced agricultural products if commercially available. If not, the product may consist of certain non-organic agricultural ingredients or non-agricultural or synthetic ingredients listed in the regulation.  No genetically modified organisms (GMO), sewage sludge or irradiation are allowed in the remaining 5%.  ‬

‪Food producers can use the above terms (“Organic” & “100% Organic”) anywhere on the package, as long as it doesn’t interfere with other legal labeling requirements.‬

‪“Made with Organic Ingredients”‬

‪Up to 3 organic ingredients can be highlighted anywhere on the package.  This practice is often used as a marketing tool to underscore that the product contains organic ingredients.  An unlimited number of organic ingredients can be marked as such in the ingredient list.  For a food producer to use the “Made with Organic Ingredients” label, however, at least 70% of the ingredients must be certified organic.  The remaining 30% may be substances from any non-organic product produced without GMO, sewage sludge, or irradiation.  ‬

‪What Happens When a Product is Less Than 70% Organic?‬

‪If a product is made with less then 70% organic ingredients, the manufacturer is not permitted to use the term “organic” anywhere on the label, EXCEPT in the ingredient list itself (such as “organic carrots, peas, organic tomatoes”, etc.)  The USDA Certified Organic Seal may not be used.  The label must, however, identify the certifying agent, identify which ingredients are organic, and may include a statement or organic percentage in the ingredient information panel.‬

‪“ALL NATURAL”‬

‪. . . Ah, the wild west of food marketing.  I hear people say, “But the label says that it’s All Natural?  How could that be bad?”  ‬


‪Steve Kluting, an attorney with Varnum, who focuses his practice on food industry issues, including product labeling, explains:  ‬

‪While the use of "organic" and its related terms is strictly regulated, the use of "natural" and "all natural" on food labeling is much more loosely dictated under the law.  To label a product as "natural", a food business does not have clear and straight-forward rules to comply with so, as a result, the grocery aisle is filled with "natural" products that a consumer might purchase despite that consumer having a definition of "natural" that's vastly different from the FDA, the USDA, or the food processor that labeled it.

‪In short, the FDA does not consistently define this claim, nor regulate it.  It’s policy (not law) is that natural foods contain no added color, synthetic substances or flavors, and that nothing artificial or synthetic has been included in, or added to, a food that would not normally be expected to be in food.  But what is considered “synthetic”?  High fructose corn syrup is one example of an inconsistency and is under scrutiny by a number of courts.  GMO products are also allowed with this label.‬

‪GMO LABELING‬

‪According to the USDA Economic Research Service, 90% of soy crops produced in the United States, 86% of corn and 93% of cotton are genetically modified.  About 80% of our processed foods contain GMOs (think soy lecithin, sugar from GM sugar beets, and high fructose corn syrup).   At least 30 countries (including Japan and the entire European Union) have either banned, demanded labeling, or have greatly restricted GMOs.  According to Reuters in February 2012, China, the 2nd largest corn consumer in the world, is considering approval for GMO corn for 2013.  ‬


‪The U.S. has been using GMO crops since around 1996 without any labeling.  There is also no standard definition of “Non-GMO” labeling.‬

Photo Courtesy of Women's Lifestyle Magazine
‪Petitions created by consumer and farmer groups raise important questions about the wisdom and safety of GMO crops.  In March 2012, 45 Congressmen and women and 10 Senators have recognized that GMOs are a critical issue and have prompted the FDA to look at GMOs much more closely.  ‬

‪In January of 2000, a group of 828 concerned scientists from 84 different countries have issued an open letter to all governments, urging them to immediately suspend all release of GMO crops:‬

‪We urge the US Congress to reject GM crops as both hazardous and contrary to the interest of family farmers; and to support research and development of sustainable agricultural methods that can truly benefit family farmers all over the world. ‬

‪We, the undersigned scientists, call for the immediate suspension of all environmental releases of GM crops and products, both commercially and in open field trials, for at least 5 years; … and for a comprehensive public enquiry into the future of agriculture and food security for all.

‪  ~ From an open letter to all governments Signed by 828 scientists from 84 different countries, including Majory U.S. Universities.‬

‪What is a GMO?‬

‪A GMO food contains genes replicated in a lab from other plants, animals, bacteria or even viruses that give these foods different characteristics – such as a resistance to insects, increased yield, or drought resistance.  This is not crossbreeding.  GMO crops are specifically engineered to withstand the direct application of herbicide, and /or to produce insecticide.‬
‪ ‬

‪What’s Wrong with GMOs?‬

‪Some of these new characteristics sound noble and helpful.  GMO manufacturers have made claims that genetic engineering will “feed the world”.  However, they have released new genes into our food supply without knowing how these genetic alterations would affect human, animal or farming health.  ‬

‪Independent, long- term studies have exposed serious health and farming concerns.  The Non-GMO Project, a non-profit organization dedicated to preserving non-GMO foods, has compiled an impressive, but frightening list of scientific research using large and small animals.  According to these studies, GMOs have caused problems with immune, reproductive, and gastrointestinal systems; and have also caused organ damage and accelerated aging in these animals.  ‬

‪In one of only a handful of human studies performed at the University of Sherbrooke Hospital in Quebec, Canada, 93% of pregnant women had traces of insecticide present in their blood, namely, the bacterial toxin, “bacillus thuringiensis”, or Bt, found in GMO Corn.   The health effects were beyond the scope of this study, but significant, none-the-less.  ‬

‪GMOs are an experiment, plain and simple.  It is not the consumer’s responsibility to prove that GMOs are safe or to put their health on the line in the name of science.  GMOs must be removed from the market and then be properly and independently tested.  Until then, we have the power to act.  We can demand labeling of GMO foods.  The FDA has until mid-April to respond to the petition to label GMO’s.   Go to www.justlabelit.org to learn more.‬

‪7 Simple Actions You Can Do Now‬

‪1.    Read every label – every time‬
‪2.    Know your brands‬
‪3.    Stay away from the top GMO 8:  corn, soybeans, canola, cottonseed, sugar beets, Hawaiian papaya, yellow squash and zucchini (buy these organic, but be aware that cross-breeding between GMO & Organic can easily occur for certain crops, like corn)‬
‪4.    Go Organic whenever possible‬
‪5.    Look for the “Non-GMO Project” Seal‬
‪6.    Shop using the “Non-GMO Shopping Guide”‬
‪7.    Ask the FDA for Labeling.  Nearly one million people have sent their comments to the FDA through the “Just Label It!” campaign at www.justlabelit.org.  The FDA has until mid-April to respond to the petition to label GMOs.  ‬

‪MORE RESOURCES‬

‪The Institute for Responsible Technology (http://www.responsibletechnology.org)‬

‪Just Label It!  (http://justlabelit.org)‬
‪ ‬
‪The Non-GMO Shopping Guide  (http://nongmoshoppingguide.com‬)

About Elisabeth

Writer, owner of Blue Pearl Strategies, and lover of all culinary delights, Elisabeth is a Tender Foodie. She started The Tender Palate, a website for foodies with food allergies where she consults with experts from every area of the Tender Foodie life. She believes that everyone should live deliciously and have a healthy seat at the table. Find her at www.tenderpalate.com.

10 Steps to Living Allergen-Free (& Doing it Well) - Women's Lifestyle

Women's LifeStyle Magazine Jan. 2012 - Fresh Starts (Find this article pgs 36-37)

After being featured in their October 2011 issue, This Tender Foodie is so pleased to be a new writer for Women's Lifestyle Magazine this year.   This article is reprinted here with their permission.  But do visit the full January 2012 issue called"Fresh Starts".  It is full of great stuff for the new year. Plus, this article (and all of the others) is so gorgeous laid out in the magazine!

Food Allergies Have Risen - Have You Noticed?

The number of people diagnosed with food allergies or intolerances (aka “Tender Foodies”) has risen significantly and rapidly.  An online search will lead you to gads of stories about people, including celebrities, who struggle with their reactions to food.  To help us understand how quickly food allergies have “spread”; here are a few facts:

•    Peanut allergies have tripled from 1997-2008 (FAAN)
•    There are 4 times more people with Celiac Disease than there were 50 years ago (March 2011, University of Maryland study).  
•    12 million people (and counting) have classic food allergies (FAAN)
•    In March 2011, a study revealed that as many as 18 million people are suspected to have gluten sensitivity.  (U of Maryland study).


This rapid rise in food allergies has also spawned virtual Petri dish of confusion.  Thus, in honor of 2012, this Tender Foodie column will start at the very beginning (it’s a very good place to start) with some tips to help you better understand what your Tender Foodie life is all about.

Take These 10 Steps

1. Understand Your Reaction to Food

There are eight types of foods that cause 90% of all allergic reactions (namely, eggs, dairy, gluten, soy, fish, shellfish, tree nuts, peanuts).  Very simply, allergic reactions occur because your immune system mistakes a food (or foods) for a foreign invader.  There are several different types of immune responses that can cause a variety of symptoms including hives, itching, eczema, difficulty breathing, swollen joints, diarrhea, constipation, fatigue, nasal congestion, depression, anxiety, anaphylaxis (a severe reaction to an allergen) and possibly death.  

So when it comes to living with food allergies, the first step to “doing it well” is to understand your particular reaction to food.   Is it a Food Allergy?  Intolerance?  Sensitivity?  Celiac Disease?  Or is it something else?  This is sometimes difficult to determine, since not everyone defines “food allergy” the same way and not all food reactions are alike.  To help, I contacted Sheila George, M.D., C.A. (a family medical practitioner in New York, specializing in chronic disease) and Alessio Fasano, M.D., Director of the University of Maryland Center for Celiac Research.  With the input of experts like these, we have compiled a working list of fundamental definitions at www.TenderPalate.com.  If we can speak the same language, doctors, patients, friends and families can come to a better understanding and Tender Foodies can live in better health.

2.  Find the Right Doctor

If you think your symptoms are because of the food you are eating, it is very important to find the right doctor …and the right diagnosis.  There are many types of tests available now, including skin prick tests, blood tests, food challenges, and intestinal biopsies (if warranted, to diagnose Celiac disease).  Ask your doctor about the tests available and if you should be referred to a specialist.  If you need a guide, bring this article and print out the food allergy definitions page on www.TenderPalate.com.

3. Develop an Emergency Action Plan

You could have more than one food allergy or intolerance, each with a different type of bodily response.  Work with your doctor(s) to answer these fundamental questions:
•    Exactly which kind of food allergy or reaction do I have?  
•    Is there an underlying reason for my food allergies or intolerances?
•    How do I treat the underlying cause?
•    How severe is each allergy/intolerance?  
•    Which foods (if any) should be on a rotation diet?  
•    Which foods (if any) must I completely avoid eating?  
•    Which foods (if any) are dangerous to inhale?  
•    Do I need an Epi-pen?  
•    When and how do I use the Epi-pen or any other medication?   

Then develop your action plan and review it with your doctor(s).  Your plan should include how to recognize each type of reaction, what to do if the reaction is a severe one, and who to include in your plan should action be needed.  

4. Learn to Read Labels

It’s not as easy as it sounds.  Along with words that even rocket scientists can’t pronounce, labels contain allergens “hidden” from plain view.  For instance, most regular soy sauce contains wheat.  “Smoke flavoring” can contain barley malt (gluten).  Whey is derived from dairy.  Livetin contains eggs.  “Non-Dairy” does NOT mean “Dairy-free”.   Don’t ignore the “May Contain” labeling, either.  Significant amounts of an allergen can be present in foods because of processing, even if that allergen is not listed in the ingredients.  For more on this, visit “Hidden Allergens” at www.tenderpalate.com.  A good general label-reading rule is that if you don’t know what it is, don’t eat it.

5. Do a Pantry Cleanse

If you have a severe reaction to food particles that can become airborne, like wheat flour or peanuts, remove that allergen from your home.  Go through your pantry, refrigerator and freezer, and then dump (or give to a food pantry) any food with ingredients you or your family can’t eat. Even your medicine cabinet needs a good “once-over”.  Vitamins and medications can be made with or derived from things like wheat, eggs, dairy, corn or yeast.   For mixed households with less severe reactions, separate the non-allergenic brands from others to keep from making a mistake or cross contaminating.   After all, breadcrumbs can easily make it into the family butter, nut butters can get into the jam (via a knife), wheat crumbs can get on your gluten-free toast (just from the toaster) and sponges can carry allergens from counter to dish . . . (you get the picture).

6. Check Beauty Products

Researchers recently warned that cosmetics like lipsticks, foundations and powders often contain gluten, but are not labeled as such.  Vitamin E, for instance, is typically derived from wheat.  This can be very dangerous to celiac folks and people with wheat allergies.  Check your shampoo.  Many skin care products also contain coconut and nut oils, which can cause a reaction in people with those allergies.  So don’t stop with the kitchen.  

7.  Find Your Brands

Adding more whole foods like fruits, vegetables, and whole grains to your diet can help remove those long, multi-syllabic mystery ingredients from your worries.  But not all foods are processed alike.  Find those brands (whole grains and otherwise) that pay attention to processing and that test for your particular allergies.  Some really wonderful brands have popped up, find them and relax a little.

8.  Get Out of the Box (and Enjoy it.)

So you can’t eat certain foods.  This doesn’t mean that you are banned from the world of culinary delights.  Your delights will simply be different.  According to many doctors, a varied diet is important to a healthy digestive system.  Wonderful grains like quinoa, buckwheat, teff and millet are packed with nutrients.  Dairy-free coconut milk and yogurt are filled with those important medium chain fatty acids that are tough to get in other foods.  Not all allergen-free products are healthy (some are quite unhealthy), so use your newfound knowledge to be creative, expand your palate and improve your health.

9.  Create Your Tribe

It can be tough to “train” your family and friends.  It’s hard enough to train yourself.  Share this and other articles like it, with anyone who is responsible for feeding a food allergic person.  Share the action plan that you and your doctor create.  Your tribe” could be teachers, family, and friends; even restaurants that have done their homework.  Give your family a list of your allergens to keep in their kitchen.   Always discuss the menu, the ingredients and what needs to be cooked separately before you go to someone else’s house for dinner.  Be gracious but firm.  If someone can’t or won’t accommodate you (they don’t have to), you could suggest the option of bringing a dish that you can eat and share.  Helpful, active support groups are popping up all over the Internet and in towns across the United States where you can discuss common social issues as well as food allergy products and practices.   

10.  Lastly, know that you are not alone. 

There are millions of Tender Foodies just like you.  

Interview w/ Dr. Alessio Fasano Part 3: Gluten Sensitivity (a new "food allergy")

Let's Review

THERE ARE 3 FORMS OF GLUTEN-BASED REACTIONS:   Celiac Disease, Gluten Sensitivity, and a Gluten/Wheat Allergy.  There are four different types of wheat allergy -- and each type behaves differently.

In Part 1 of this interview series, I was most privileged to speak with Dr. Fasano about gluten, our bodies’ response(s) to it, wheat allergies, and why so many people today have problems with wheat (plus rye, barley, spelt, triticale, etc.) and gluten-based products.  I learned a surprising fact:  no one can properly digest gluten. Read more...

In Part 2, we discussed testing for celiac disease.  Celiac Disease is a severe auto-immune disease triggered by the gluten protein.  Dr. Fasano and his team put together information on how to get tested for celiac disease.     According to Dr. Fasano the latest research shows that you need to have 4 out of the first 5 of the following markers in order to be diagnosed with Celiac Disease.  Read how to get tested...

Gluten Sensitivity - The New Kid on the Block

In this post, Part 3, Dr. Fasano's team answered questions about what Dr. Fasano calls "the new kid on the block", or... gluten sensitivity.  My thanks to Dr. Fasano and his team at the Center For Celiac Research.

TF: What is gluten sensitivity?

Dr. Fasano: As the word “sensitive” suggests, gluten sensitivity is a reaction to ingesting gluten, which is found in wheat, barley and rye. Symptoms can arise throughout the body and range from fatigue and “foggy mind” to diarrhea, depression and joint pain (see more on symptoms below).


TF: How does gluten sensitivity differ from celiac disease?

Dr. Fasano:  Although symptoms (particularly gastrointestinal) are often similar to those of celiac disease, the overall clinical picture is less severe. Recent research at the University of Maryland Center for Celiac Research shows that gluten sensitivity is a different clinical entity that does not result in the intestinal inflammation that leads to a flattening of the villi of the small intestine that characterizes celiac disease. The development of tissue transglutaminase (tTG) autoantibodies, used to diagnose celiac disease, is not present in gluten sensitivity.

A different immune mechanism, the innate immune response, comes into play in reactions of gluten sensitivity, as opposed to the long-term adaptive immune response that arises in celiac disease. Researchers believe that gluten sensitive reactions do not engender the same long-term damage to the intestine that untreated celiac disease can cause.


TF:  What are the symptoms of gluten sensitivity?

Dr. Fasano:  Just as in celiac disease, gluten sensitivity can affect all body systems and generate a wide variety of symptoms. Gastrointestinal symptoms can include diarrhea, bloating, cramping, abdominal pain and constipation. Behavioral symptoms can include “foggy mind,” depression and ADHD-like behavior. Other symptoms include anemia, joint pain, osteoporosis, and leg numbness.


TF: How many people does gluten sensitivity affect?

Dr. Fasano:  Research from the University of Maryland Center for Celiac Research indicates that it affects approximately 18 million people, or six percent of the population.


TF:  How can I tell if I have gluten sensitivity and what should I do?

Dr. Fasano: This is something to discuss with your family physician or health care provider. If celiac disease and other conditions have been ruled out, i.e., irritable bowel syndrome and other forms of intestinal inflammation, talk to your doctor and dietitian about a gluten-free diet. Please do not undertake the gluten-free diet as treatment without the supervision of health care professionals as nutritional considerations as well as health considerations must be taken into account with this treatment.


TF:  Do I still need to be tested for celiac disease if I think I’m gluten sensitive?

Dr. Fasano:  Yes. You need to be tested for celiac disease to rule out the possibility of long-term complications. Accordingly, do not go on a gluten-free diet until the possibility of celiac disease has been eliminated through testing. If you go on a gluten-free diet and are then tested for celiac disease, the tests could be falsely negative due to the lack of autoantibodies in your blood serum.

Read how to get tested for celiac disease here.


TF:  Is there a test for gluten sensitivity?

Dr. Fasano:  Although researchers at the CFCR are working to develop tests for gluten sensitivity, currently there are no definitive blood tests for the condition.


TF:  Is there a cure for gluten sensitivity?

Dr. Fasano:  Just as in celiac disease, there is no cure for gluten sensitivity. The only treatment currently available is the gluten-free diet.

Other Articles on Gluten-based Reactions

Interview w/ Dr. Alessio Fasano Part 1:  Should Anyone Eat Gluten?

Interview w/ Dr. Alessio Fasano Part 2:  How to Get Tested for Celiac Disease.

About Dr. Fasano & the Center For Celiac Research

Alessio Fasano, M.D., is the director of the University of Maryland Center for Celiac Research, professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine and director of the Mucosal Biology Research Center at the University of Maryland School of Medicine.  Dr. Fasano is an expert on gluten/wheat allergies and celiac disease.  In 2011, he led the research team who discovered a new immune reaction called "gluten sensitivity".

University of Maryland Center for Celiac Research is an institution engaged in clinical care, diagnostic support, education, and clinical and basic science research in Celiac Disease.

The paramount goal of the Center for Celiac Research is to increase the awareness of Celiac Disease in order to provide better care, better quality of life, and more adequate support for the Celiac Disease community.  To view the CFCR's brochure, CLICK HERE.

Interview w/ Dr. Alessio Fasano, Part 2: How to Get Tested for Celiac Disease

 

This post is part of a series on gluten and its various reactions.  In this post I’ve asked Dr. Fasano and his team to break down the markers for Celiac Disease so you can clearly discuss testing with your own doctor.  Many thanks to Dr. Fasano and his team (especially Susie) for helping me put this together.

Background:  No One Can Digest Gluten

During Part 1 of my interview with Alessio Fasano, M.D. of the University of Maryland’s Celiac Research Center, we have learned that no one can properly digest gluten, or more specifically, "gliadin", a protein found in wheat.  This blew me away. 

We simply don’t have it in us -- the enzyme(s), that is.  According to Dr. Fasano, our bodies haven’t yet evolved the ability to process this fairly modern grain called "wheat".  Modern science has also increased the protein content of wheat by 14% in recent years.  In terms of human digestion, that's a big deal.  You see, our bodies need specific enzymes to break down gliadin from its amino acid form (of glutamine and proline) into elements small enough for us to digest.  Humans don’t have these enzymes.  The enzymes that we do have can only break down gliadin into peptides -- elements too large for our small intestines to absorb.  So in an effort to gather nutrients; our small intestines separate to let the peptides through.  As Dr. Fasano put it, “the gliadin cross-talks with our cells, confusing them and causes our small intestines to leak.”

In a “normal” person, the intestinal walls still separate improperly, but the peptide passes through the digestive tract unnoticed by their immune system.  When someone has a reaction (such as gluten sensitivity or an allergy), that person’s immune system recognizes the larger peptide as an enemy (its not supposed to be there) and rushes to protect.  If that person has celiac disease, the immune system gets so confused that it turns on the intestinal walls themselves, damaging them.  The gluten is the "trigger" for this autoimmune disease.   And celiac disease is the only auto-immune disease with a clear trigger. 

The only treatment of celiac disease, or any immune reaction to gluten, is to completely remove all wheat (and also similar protein-containing rye, barley, spelt and triticale) from your diet.  Some people also need to remove oats.

THERE ARE 3 FORMS OF GLUTEN-BASED REACTIONS:   Celiac Disease, Gluten Sensitivity, and a Gluten/Wheat Allergy.  There are four different types of wheat allergy -- and each type behaves differently.

Note:  Gluten Sensitivity has many of the same symptoms.  In Part 3 we will address some frequently asked questions about Gluten Sensitivity.

In this post I’ve asked Dr. Fasano and his team to break down the markers for Celiac Disease so you can clearly discuss testing with your own doctor.  

Markers for Celiac Disease Testing

Biopsy showing normal intestinal villi, or "Stage 0". (Used with permission of The Center for Celiac Research) According to Dr. Fasano in our interview, the latest research shows that you could have 4 out of the first 5 of the following markers in order to be diagnosed with Celiac Disease.  If your doctor finds that you have 4 markers before your biopsy, you may be able to avoid doing the biopsy, however, the biopsy is the gold diagnostic standard* (this is no longer considered to be true, please see 2014 update below).

*UPDATE: In my 2014 interview with Dr. Fasano, he updates this information and says that the biopsy is no longer the gold standard for celiac diagnosis. It is an important marker, but only after the other 4 out of 5 markers warrant it.

Read the 2014 interview & the updated information here.

Marker #1:  Symptoms 

Symptoms of celiac disease include diarrhea, constipation, weight loss, abdominal pain, chronic fatigue, weakness, malnutrition, and other gastrointestinal problems. In children, the symptoms may include failure to thrive (an inability to grow and put on weight), irritability, an inability to concentrate, diarrhea and bloating. Further, people affected by celiac disease may experience extra-intestinal symptoms that involve many systems and organs including bones (osteoporosis, arthritis, and joint pain), blood (anemia and bleeding), reproductive system (infertility and reoccurring abortion), nervous system (chronic fatigue syndrome, depression, dementia), and behavioral changes.

 Note:  Another manifestation of celiac disease is a skin rash called "Dermatitis Herpetiformis" (DH).  A skin biopsy is typically taken to determine if you have this manifestation.

Marker #2:  A positive blood test

Biopsy Showing Stage 1: Infiltrative Damage to the mucosal lining of the small intestine. (Used with permission of The Center for Celiac Research)There is a particular series of blood tests called the ‘Celiac Panel'". These tests measure your immune system’s response to gluten in the food you eat.

•  tTG-IgA or tissue transglutaminase-IgA
• AGA-IgG or Antigliadin IgG
• AGA-IgA or Antigliadin IGA
• Total IGA

The presence of tTG antibodies is highly suggestive of Celiac Disease, while AGA can be elevated also in cases of wheat allergy.

Marker #3:  Genetic Compatibility 

Biopsy Showing Stage 2: Hyperplastic - the villi are shrinking and flattening. (Used with permission of The Center for Celiac Research)As an autoimmune disease, Celiac Disease is the consequence of the interplay between genes and the environment (gluten). We don’t know all the necessary genes to develop Celiac Disease; however, HLA DQ2 and/or DQ8 are absolutely necessary to develop the disease. Since one-third of the general population also has these genes, the presence of DQ2 or DQ8 does not imply that the person will develop Celiac Disease, rather, that they have a genetic compatibility with Celiac Disease. Conversely, the absence of DQ2/DQ8 almost certainly rules out Celiac Disease.

Marker #4:  An Intestinal Biopsy

Intestinal biopsy showing Stage 3a, or partial atrophy of the lining of the small intestine. (Photo used with permission from The Center for Celiac Research)A biopsy is really the gold standard for diagnosing Celiac Disease. 

NOTE: In my 2014 interview with Dr. Fasano, he says that the biopsy is no longer the gold standard for celiac diagnosis. It is an important marker, but only after the other 4 out of 5 markers warrant it.

Read the 2014 interview & the updated information here.

If blood tests and symptoms suggest celiac disease, a biopsy of the small intestine is usually taken to confirm that diagnosis. During the biopsy, the doctor removes tiny tissue samples from the small intestine to check for damage to the intestinal villi. To grab the sample, a doctor threads a long, thin tube called an endoscope through the patient's mouth and stomach, then into the small intestine. Using the endoscope as a tunnel, the doctor passes instruments into the small intestine in order to retrieve the sample.

A Marsh Score is used to determine how far the celiac disease has advanced.  Scoring starts at "0" and ends at "4".  If the mucosa (intestinal lining) is normal, celiac disease is unlikely, or "Stage 0".  This is also known as the "pre-infiltrative stage."  Stage 4 indicates a total flattening (or atrophy) of the villi in the small intestine.  The villi allow nutrients from food to be absorbed by the small intestine.  Without healthy villi, we become mal-nourished, even if we eat like a horse.

Marker #5: The symptoms resolve (go away) with a gluten-free diet.

Biopsy showing Stage 3b - subtotal atrophy of the small intestine where the villi are shrinking and flattening (Photo used wtih permission of the Center for Celiac Research)A gluten-free diet is more than simply taking bread out of your meals.  Gluten can be "hidden" within ingredients like smoke flavoring or barley malt (among many others).  Gluten also is in many cosmetics and beauty products.   In addition, certain products that do not inherently contain gluten can be processed with wheat, such as other flours or nuts; and as a result, processed foods can have a great deal of cross contamination. 

NOTE:  A stool sample test, which can recognize positive antibodies, is also available.  But at this point stool samples are not considered as a reliable diagnostic tool by the medical community. 

See: The Most Surprising Places for Hidden Gluten

Long-term Health Consequences & Treatment

Celiac disease can be life threatening.  If you don't entirely remove gluten from your diet, celiac Stage 4: Biopsy showing total atrophy of the mucosal lining. The intestinal villi are completely flattened. (Used with permission from the Center for Celiac Research)disease can have long term and serious health consequences.  I stress this, because I’ve heard those newly diagnosed ask, “How much gluten can I eat?”  Then some bad advice in return, “Well, it depends upon how bad your celiac disease is.”  There may be degrees of damage caused by the illlness, but there is no corresponding degree of treatment.  The only treatment for celiac disease is a completely gluten-free diet. 

Celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders. Untreated celiac disease has also been linked an increased risk of certain types of cancer, especially intestinal lymphoma   _Center for Celiac Research

Creative Healing

The good news is, that if you do remove gluten from your diet, and your diagnosis is celiac disease, your health can and probably will improve.  Your intestines can return to normal, and your risk for other diseases greatly reduced.

The villi are not permanently damaged. The intestine is an organ, which renews itself every three days. Therefore, if the damage is exclusively due to CD, the villi will be reformed once on a gluten-free diet. The time for the villa to return to normal varies among individuals.   _Center for Celiac Research

 To heal, tap into your creative juices and approach eating with a different mindset.  Your life now includes minimally processed whole foods and constant label reading.  You will need to carefully choose restaurants and speak up to your friends, family and hosts, whomever they may be.  Don't eat anything unless you know exactly what it contains.  If you are recently diagnosed, become an information junkie about your disease and learn, learn, learn.  The Tender Palate (The Tender Foodie), The Center for Celiac Research and other great resources are here to help.  With some changes, a healthy, satisfying life is just around the corner.

Other Articles on Gluten-based Reactions

PART ONE:  Interview w/ Dr. Alessio Fasano:  Should Anyone Eat Gluten?

PART THREE:  Gluten Sensitivity - A New Food Allergy

For More information, The University of Maryland Center for Celiac Research has a wealth of videos, articles and FAQs to help guide you.

About Dr. Fasano & the Center For Celiac Research

Alessio Fasano, M.D., is the director of the University of Maryland Center for Celiac Research, professor of pediatrics, medicine and physiology at the University of Maryland School of Medicine and director of the Mucosal Biology Research Center at the University of Maryland School of Medicine.  Dr. Fasano is an expert on gluten/wheat allergies and celiac disease.  In 2011, he led the research team who discovered a new immune reaction called "gluten sensitivity".

University of Maryland Center for Celiac Research is an institution engaged in clinical care, diagnostic support, education, and clinical and basic science research in Celiac Disease.

The paramount goal of the Center for Celiac Research is to increase the awareness of Celiac Disease in order to provide better care, better quality of life, and more adequate support for the Celiac Disease community.  To view the CFCR's brochure, CLICK HERE.