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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.
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.
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.
My love for brownies led me to try every gluten- and dairy-free brownie mix on the shelves. Not floored (although there are some great mixes out there now), I started making my own from scratch. Then with alternative flour in my hair and coconut oil on my shirt, I looked for a brownie-like cake that I could take to parties and have people ask, "Who made this?" To achieve this lofty goal, I thought it wise to start with a recipe from one of the brownie masters, The Barefoot Contessa. I adapted her recipe so that I could safely and joyfully consume, but also have "normal" guests demand a repeat performance. This recipe is rich (you don't need big pieces), chocolatey, chewey - all of the different textures that you want in a brownie.
And this tart gets people to make naughty sounds.
Just out of the oven. It smells so, so good.
Ingredients
6 TBS of coconut oil
20 oz. (3.25 cups) of Enjoy Life Semi-sweet Chocolate Chips (or bittersweet chunks if you are really in a decadent mood)
1 cup of sugar
3 large eggs
1/2 tsp. of gluten-free vanilla extract
1/2 tsp. of GF coffee extract (rounds out the flavor of the chocolate)
1/4 c. GF brown rice flour (I find white rice flour too sweet) - I use Bob's Red Mill
1/4 c. GF tapioca flour -- I use Bob's Red Mill
1/4 tsp. baking powder
1/4 tsp. sea or kosher salt
2-3 TBS of rice, almond, coconut (or other alternative) milk
Put it Together
Preheat the oven to 350 degrees F.
With coconut oil (or safflower, grape seed), grease a 9-inch tart pan with removable sides. Then flour the pan with brown rice flour.
Wet Ingredients: Melt the 6 TBS of coconut oil in a bowl over simmering water. Make sure the water isn't touching the bottom of the bowl. Add 2 cups of the chocolate chips to the bowl with the oil, then remove from heat until the chocolate melts. If you need more heat, put the bowl of back on the simmering water for a few seconds. (Chocolate burns easily, hence this method.) Let chocolate cool completely.
In a bowl of an electric mixer (use the paddle attachment) beat the eggs, sugar, GF coffee extract and GF Vanilla on medium-high speed until light and fluffy - about 3 minutes. Stir in the cooled chocolate.
Dry Ingredients: In a medium bowl, combine the tapioca and brown rice flours, baking powder, salt and 1 cup of chocolate chips. Fold the flour mixture into the chocolate mixture until just combined.
Bake: Pour the batter into the pan and bake for 35 to 40 minutes until the center is puffy. Don't overbake - if the center puffs up and possibly cracks, it is good to go. The inside will still be very soft, but the outer rim will be perfectly chewy.
Dress Up: Melt the remaining chocolate chips with the 2-3 TBS of rice milk (or other alternative milk). You can do this right in the double boiler you used for the first melted chocolate. Drizzle over the top of the tart in whatever pattern floats your boat.
Cool to room temperature before removing the tart pan sides.
I’ve been following Crave Bake Shop's progress on Facebook, intrigued by their emphasis on gluten-free integrity, exacting pastry standards, vegan Thursdays, and multiple allergy sensitivity. So when owner Kyra Bussanich contacted me and asked, “Can we send you some treats to try?” I was pleased, but had no idea that she was about to be named the first gluten-free baker to ever win the Food Network’s “Cupcake Wars”.
Kyra and I chatted on December 16 (Doughnut Friday). At that time she couldn’t even discuss the win, let alone reveal on what show she would be appearing. She was also the first gluten-free baker to ever show up on Cupcake Wars in 2010, so I assumed the secret involved said show again. Needless to say, I rushed home that following Sunday just in time to see her grab the prize away from heavy hitting bakers who used traditional flours.
Because of my somewhat complex allergies, I’ll be receiving Crave treats to review in 2012 – after the holiday rush. Perhaps then, I’ll coax Kyra into for an inside look at her experience with other cupcake warriors, that intimidating-looking panel of experts, and her introduction to namesake (and one of my fave actresses), Kyra Sedgwick.
Pictured: Jackie, Kyra Bussanich, Kyra Sedgwick. The episode let Kyra have a chance to cater a Hollywood party on the set of "The Closer" starring Emmy award winning Kyra Sedgwick.
Online Bakery to Retail Yum Store
In the meantime, let’s focus on what we could discuss: her journey from online baker to a retail store with lines out the door and down the block on opening day.
I didn’t anticipate such a crowd. I thought that it would be six months before I’d hire my first employee, but I had to hire someone the first day!
Kyra first launched Crave’s online presence in 2008, but on May 13, 2011, she opened “a whole different ballgame” in Lake Oswego, Oregon. Kyra said that this open-minded, small business community, located just outside of Portland, was committed to helping her grow.
As we chatted up the artsy quality of Lake Oswego, it reminded me of Saugatuck, MI – a town near my current state of repose, Grand Rapids. As small worlds would have it, Kyra’s grandfather was born in Grand Rapids before ending up in San Diego. Six Degrees.
I found it wise that Crave learned from the online business before opening the retail storefront. One important lesson was that neither the size nor the brightness of multiple orange “fragile” stickers could keep your precious cupcakes from being dropkicked on their journey to your door. So Crave packages accordingly and offers limited items available for shipment, like 3 kinds of cupcakes, ring dings, and the scones of the day. Sweet.
In store, they create beautiful special order wedding cakes, and have a pretty large menu of gluten-free yummi-ness from which to choose.
Passion, Sacrifice and Le Cordon Bleu
Custom Birthday CakeKyra received her training at the famous culinary arts institute, Le Cordon Bleu. As we chatted, it was clear that she measures her gluten-free pastries against the best, and that she will not compromise taste, texture and flavor simply to make a treat.
We love requests. But it’s difficult when people expect us to serve sugar-free, vegan and dairy-free every day. My heart always sinks, because it’s so hard for me to say, “I can’t do that for you today”. Our goal is to do amazing tasting gluten-free things. There is no reason that gluten-free shouldn’t taste just as good. I don’t want to compromise our standards.
Thinking of her in a roomful of wheat flour, however, I thought of her health and she graciously let me inquire. Kyra has Crohn’s, and her mother has been recently diagnosed with Celiac Disease, so given her own diagnosis and the genetic propensity for CD, she was putting herself in front of a gluten-toting firing squad every day during her training.
I was sick a lot in pastry school and missed about 1 day every other week because I was too sick to go to class. Some of my professors understood, but others were not very sympathetic.
I thought of my tour of the bakery at The Secchia Culinary Institute in Grand Rapids, which I took earlier this year. I had a clear picture of what Kyra’s experience might have been like. Secchia’s bakery had huge bins marked “wheat”, “rye”, and “barley”. During my tour there was no class in action, yet the empty bakery was clouded with flour nonetheless. I could only imagine the sacrifice Kyra made to learn her craft. My respect for this chick climbed even higher as we spoke.
On Gluten-free Laws, GMO’s and Health
Wedding CakeWhenever I interview a baker, researcher, doctor or flour manufacturer, I ask their opinion about the pending gluten-free law. Is 20 parts per million too much? Could the law go any further?
20 ppm is too much. I think it should be zero ppm, but that 20 ppm is realistic. You can’t control everything and mistakes do happen. The law itself will be primarily driven by consumers and their choices. Eight years ago no one knew about gluten, but consumers and their health drove changes in the market. Before I cut gluten out of my diet entirely, I had no appetite, was losing weight, not sleeping well and operating on a 30% gas tank. After only 3 days on a gluten-free diet I felt tons better. My mom, however, took a lot longer to heal. Even painkillers for my mom were formulated with gluten. It’s so important to have products that are labeled correctly.
As for modern day GMO’s (genetically modified organisms), she is one of the growing number of people who believe that GMO’s are one big reason behind the huge spike in gluten allergies – that and the fact that we are eating so many processed foods loaded with gluten protein.
If you don’t have your health, you don’t have anything. If you are sick, the only thing you can focus on is how you feel. Today, we often reach for a quick fix in the medicine cabinet. But that doesn’t get to the root of the problem, and just layers one medication on to the next. And it all could come down to taking care of ourselves through diet.
I think the answer is so simple. If you have celiac (or other inflammatory problems) – get off gluten.
Like so many people today, Kyra suffered for most of her life and had several misdiagnoses slapped on her forehead. On a gluten-free diet, however, she is thriving. We can all learn from experiences like Kyra’s, and garner hope, as well.
Advice for Tender Foodies
Kyra Bussanich, Owner and Creator of Crave Bake ShopI asked Kyra for some advice for the Tender Foodie population. Here is what she said.
Experiment! I used to be one of those people who liked to draw inside of the lines. I didn’t want to try a recipe unless it came out perfectly. But this is not a way to start an alternative bakery.
Once, I made grilled nectarines with a tapioca and soy pudding for my dairy-free husband. The pudding did not set, so I served him Grilled Nectarines and Vanilla Soup! He looked up at me and said, “This is really good!” So the lesson is, If it tastes good, serve it. It’s all about how you present what you create.
Bake Shop Practices
I respect bakers and restaurants who not only have strict, trained practices in place, but who also know their limits. Here are a few highlights of Crave’s practices:
Soy
The only soy used is the soy lecithin that is already processed in the Callebaut bittersweet Chocolate (which is also dairy-free) and in their dark chocolate sprinkles.
Cleaning Practices & Dairy-Free:
Between each cupcake batch they clean extensively with sanitizing solution and the racks are wiped down every day.
The most restrictive batch, like dairy-free cupcakes, go first into the oven.
They change parchment paper with every batch.
Ingredient Sourcing, GMO, Organic, Local:
They use only certified gluten-free ingredients. No gluten makes it into the bakery. (They love Bob’s Red Mill Gluten-free flours)
Crave uses no oat flour, and only use gluten-free oats (from Bob’s and Naked Oats) that are from farms that do not rotate their oats with gluten crops.
Crave use organic, non-GMO, and local ingredients wherever possible.
Prefer to make flavors using produce and products in season whenever possible.
Crave is a Kosher Certified Bake Shop
Special orders
Special orders can be accommodated if planned ahead. For instance, Crave recently fulfilled an order for a “gal who had a fatal peanut allergy”. But they had to do it during a week when other special orders could be made that didn’t require peanuts. Crave didn’t use peanuts in any items for a week prior to fulfilling this non-peanut order. Crave knows that gluten and nut particles can linger in the air for quite some time. They respect that bit of physics. I respect that. And look forward to my taste test. Bring it on, Kyra!
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.
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.
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.
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.
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.
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.
Alessio Fasano, M.D., Medical Director for the Center for Celiac ResearchSince March of this year (2011), I’ve had it on my list to speak to Alessio Fasano, the Medical Director for The University of Maryland’s Center for Celiac Research. What happened in March? Honest-to-goodness food allergy research happened, that’s what. Scientists now have a better understanding of why it seems like everyone (and his or her brother) “suddenly” has trouble eating wheat, rye, and barley.
Ten years ago, most of us didn’t know what it was. But now “gluten” is a household buzzword. Even if we don’t understand what “gluten” actually means (or even is), we see menus and products that are free of it. I would also wager that every person in the U.S. knows someone who gets sick after eating it.
Quick Facts
Gluten is that pesky protein that is unusually rich in the amino acids glutamine and proline. The gluten protein (really, the "gliadin" protein) is found in wheat, with similar trouble-causing proteins found in rye, barley, and triticale.
Because of studies that people like Dr. Fasano and his team have done, we know things we didn’t know before. Things like:
There are four different kinds of wheat allergies, with four different types of immune responses.
We also now know that 18 million people (aka everyone and his/her brother) have a newly discovered immune response called “gluten sensitivity.” People with this condition can have up to 100 symptoms, many similar to Celiac Disease. The difference is that Gluten Sensitivity does not involve the immune system attacking the intestinal wall of the patient.
The number of people with Celiac Disease has quadrupled in the last 50 years.
Once thought a genetic disease triggered in childhood, recent cases of celiac disease have shown up in people who are in their 70’s and in people who have genetic markers but no genetic history of the disease.
Celiac Disease is the only autoimmune disease that has a clear trigger (gluten). Therefore, scientists may be able to learn how to better manage other autoimmune diseases, like diabetes, multiple sclerosis, and rheumatoid arthritis through research on celiac disease.
Today, 1 in 133 people have celiac disease, a genetically linked, autoimmune response to gluten. That’s more than 2 million people in the U.S., and 1 percent of the global population. However, most do not know it.
The Interview
I was most privileged to speak with Dr. Fasano about gluten, our bodies’ response(s) to it, allergies, Celiac Disease, and what Dr. Fasano calls “the new kid on the block,” Gluten Sensitivity. We discussed why there are so many issues with gluten and how you can get tested for an immune reaction to it.
I learned a great deal from Dr. Fasano, including the fact that no one can digest gluten. I know, this surprised me, too; so I asked again and got the same answer. No one can digest gluten. Not properly.
Read on, oh seekers of answers.
TF: Why did you do this most recent study on gluten?
It started about two or three years ago after a critical mass of people with various symptoms came to our clinic, and the numbers of these particular people increased exponentially at that time. Though they had symptoms similar to Celiac Disease, they did not have Celiac Disease. We would give them a negative diagnosis for celiac disease, but they kept coming back with the same symptoms. Many had started a gluten-free diet on their own, and the gluten-free diet seemed to be a cure, a miracle. We had reached the conclusion that though this group of people did not have Celiac Disease, there must be something else happening that is gluten related.
TF: I understand that there was some research to build upon, correct? Tell me about the Banana Babies Study. How did Celiac & Gluten Sensitivity research all begin?
Shortly after World WUntreated children with Celiac Disease. Photo used with permission from the UMD Center for Celiac Researchar II, we learned that gluten was the cause for the onset of Celiac Disease, thanks to the Dutch pediatrician, Willem-Karel Dicke. He was puzzled by high infant mortality rates (due to unknown celiac disease) after the war, because in the last few years of the war when bread was unavailable, the mortality rate (from this condition) was 0.. Dicke noticed that these kids improved without bread, and that their condition deteriorated when bread became available again.
The modern era of gluten research started, however, with Samuel Ghee in the United Kingdom at the end of the 19th Century. He gave a famous speech (in a lecture at the Hospital for Sick Children, Great Ormond Street in 1887) based on his report called, “On the Coeliac Affection.” Ghee knew what Celiac Disease was (a chronic, genetically pre-disposed, digestive disease that can affect any age), knew that diet was involved, but didn’t know what triggered it. It is believed that he also followed the observations of a physician named Aretaeus the Cappadocian, who with others had described the celiac state more than 2000 years before his time.
1st Case of Celiac Disease at U of Maryland in 1938 being treated. Photo used with permission from The Center for Celiac Research.
Before Dicke's discovery and development of the gluten-free diet, one of the diets physicians tried with the afflicted children was the banana diet, used at the University of Maryland in the 1930s. Bananas contain enough calories and nutrients for survival. Parents were instructed to drop their children off for 6 months, and if they were still alive, they could pick them up and take them home.
TF: Did any Banana Babies survive?
Oh yes, in fact there are some survivors who are still around! In fact I invited a Banana Baby who was treated at the University of Maryland Hospital in the 1930s, Barbara Hudson, to speak during one of my recent lectures. She is doing great!
Listen to Dr. Fasano and Barbara Hudson Speak
TF: How many forms of gluten reactions are there?
Dr. Fasano: There are 3 forms. Celiac Disease, and Gluten Sensitivity, and Gluten/Wheat Allergy – and there are four different types of wheat allergy that all behave differently.
TF: What is behind all of these reactions?
Dr Fasano: Gliadin. Gliadin is one of the proteins found in gluten. When someone has a reaction, it’s because gliadin cross talks with our cells, causes confusion, and as a result, causes the small intestine to leak. Gliadin is a strange protein that our enzymes can’t break down from the amino acids (glutamine and proline) into elements small enough for us to digest. Our enzymes can only break down the gliadin into peptides. Peptides are too large to be absorbed properly through the small intestine. Our intestinal walls or gates, then, have to separate in order to let the larger peptide through. The immune system sees the peptide as an enemy and begins to attack. The difference is that in a normal person, the intestinal walls close back up, the small intestine becomes normal again, and the peptides remain in the intestinal tract and are simply excreted before the immune system notices them. In a person who reacts to gluten, , the walls stay open as long as you are consuming gluten. How your body reacts (with a gluten sensitivity, wheat allergy or Celiac Disease) depends upon how long the gates stay open, the number of “enemies” let through and the number of soldiers that our immune system sends to defend our bodies. For someone with Celiac Disease, the soldiers get confused and start shooting at the intestinal walls.
Used with permission from the Center for Celiac Research
TF: That sounds like everyone is gluten intolerant in some way. Is that true? Everyone?
Yes. No one can properly digest gluten. We do not have the enzymes to break it down. It all depends upon how well our intestinal walls close after we ingest it and how our immune system reacts to it.
TF: Why have so many people been diagnosed within the last few years?
Dr. Fasano: Some of this is because the medical community has become more aware and because there has been an increase in the incidents (of gluten reactions) in recent years. The environment in general is also a factor. The quantity of grains that we now eat has increased. Breast-fed babies seem to be more protected from developing adverse reactions to gluten. We’ve found that certain good bacteria, or probiotics that live within us also play a part in “turning off” an adverse reaction to gluten. Antibacterial soaps and other things are reducing the number of these bacteria, changing the microbial environment in our gut.
TF: You’ve mentioned in the study that Agricultural Changes in Wheat have played a role. Can you tell me more about this?
Dr. Fasano: Ten thousand years ago there were no gluten grains. Wheat, rye, barley and triticale are relatively new grains that have been introduced to our diet. We haven’t had enough time to evolve in order to digest these grains properly. In recent years the protein content has increased greatly in our modern wheat. Now, 14% of dry wheat is gluten. This is a lot. I understand why this has happened - more gluten gives characteristics to baked goods that are more desirable, like more elasticity; it’s more palatable, but less digestible.
TF: What about GMO’s (Genetically Modified Organisms)?
Dr. Fasano: These are all GMOs’! (Dr. Fasano indicated that we’ve been manipulating agriculture for a long time*). The problem is that if you do this too fast, like we’ve done in the last 50 years, we pay a price. It takes centuries for our bodies to adapt. There is always a balance between the advantages and the disadvantages. Agricultural mutations are all by chance so it takes time to rule out problems that are created by these mutations. It is unfair to blame GMOs as the only cause, although they are a factor. Our immune system evolved to only fight one enemy, bacteria. Now we have a host of environmental toxicities to fight and each person’s immune system does its best to manage those.
(*Note: It's important to note that we did not discuss the types of genetically modified mutations, such as seeds created to withstand pesticides or those that actually produce pesticides.)
TF: Are certain countries more prone to have a population with gluten sensitivity, gluten allergies or Celiac Disease?
Dr. Fasano: In earlier years, Celiac Disease was more common in Ireland and Italy, so it was typically easier to diagnose. People of European descent had a higher tendency to carry the genetic code that predisposes someone to that disease. Now, with the recipe of DNA plus the availability of gluten, Celiac Disease is being found at a surprising rate in India and China. As the quality of life and income improves in these countries, their diet is changing, and it now includes gluten. So, there is a rise in Celiac Disease and in Gluten Sensitivity everywhere.
TF: You’ve mentioned earlier that doctors are diagnosing more cases. Do you feel that awareness has increased in the last 5 years?
Dr. Fasano: Oh yes. Physicians are more aware, and because of this (Gluten Sensitivity) study they have more information. But we still need to learn a lot--starting with understanding the many symptoms associated with Gluten Sensitivity and Celiac Disease. Celiac Disease is systemic (it affects a number of organs and tissues). Doctors need to better understand how to test and diagnose it. Nutritionists are the ones to help patients manage food allergies and Celiac Disease, not the doctors. Doctors, however, need to learn about this new entity called Gluten Sensitivity. We all need to be able to clearly define these conditions and speak in the same language. And that starts with the right tools to diagnose gluten-related disorders.
TF: What are the markers for Celiac Disease that doctors and patients should look for?
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.
Tuesday, January 3, 2012 at 8:37PM 
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.
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".
