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In Part 1of this 2 part article, my friend Emily wrestled with the decision to have her young daughter undergo an upper GI endoscopy and biopsy to determine if she had celiac disease. The risks of anesthesia were daunting, but the need for reassurance of “knowing for sure if we needed to avoid cross contamination or food temptations” prompted Emily and her husband to schedule the procedure. First, their little girl, Nicky, had to endure a “gluten challenge” or 8 weeks of eating gluten on a daily basis to ensure that the biopsy results would be accurate.
Endure? Endure doughnuts and cookies and pasta? Yes, because Nicky’s primary symptoms of gluten intolerance were painful stomach aches and ADD-like symptoms, and thus, the daily barrage of gluten on her tender tummy soon proved to be almost too much for the little girl to bear.
Gluten Changed Her Daughter's Behavior - A Lot
Prior to the gluten challenge, Nicky’s diet was filled with “lots of fruits and veggies and only minimally processed foods” and almost no gluten in order to keep her difficulties with attention, impulsivity and other symptoms of gluten sensitivity in check. She had always been an excellent student and a well-behaved child, as long as she stayed away from the gluten-monster. Alarm bells began to go off shortly after ingesting gluten on a regular basis. During the first month of the challenge, Nicky’s teacher expressed her concern. Nicky’s behavior had become disruptive in the classroom and she had periods of “explosive rage.” Her mother expounded, “Nicky was not coping…not managing…and having a really hard time letting things go. She was no longer in control of herself.”
While the endoscopy and anesthesia loomed in the near future, Emily found it almost unbearable to watch her sweet daughter’s personality change as the flood of gluten invaded her body. “She would space-out…something like getting dressed in the morning was exceptionally challenging.” Emily explained how Nicky couldn’t sequence the steps and how she ‘got lost” in the process. “Twenty minutes later, I’d find her half-dressed and completely off-task and have to redirect her to finish getting on her outfit for school.”
The Day of the Endoscopy
Finally, the day of the endoscopy arrived. The ease of the entire process was a complete surprise to Emily and so much more informal than she had anticipated. Because she had chosen pediatric specialists, the complete procedure was family and child-centered. The pediatric anesthesiologist called Emily the night before (a Sunday!) to introduce himself and see if she or her husband had any questions. The next morning, Nicky had the procedure done in her “street clothes” and her parents were encouraged to go back to the procedure room with her. They stayed there till she fell asleep, gave her a kiss and 15 minutes later met her in the recovery area, where she had a Popsicle™. “I had pictured it in my own mind so differently! If I had known it was that easy , I would have been less worried. Knowledge is key. ”
The Results Are In
Two weeks later, the biopsy results were revealed with two precious words: no celiac. According to the University of Maryland's Center for Celiac Research, 4 out of 5 distinct markers would necessitate a positive diagnosis (see a list of these markers here). However, this little one had 3 out of 5. This was good news.
When I asked Emily what her first thoughts were after hearing those precious two words, she expressed a sigh of relief. “NOW we know. Now we know that a little gluten here and there won't have serious, unseen side effects. We will continue to respect her gluten sensitivity, but, thankfully, being a sensitivity, it allows us a little freedom. She has chosen in the past to be gluten-free because of her stomach aches, and now we can continue to allow her a little independence in that choice. But, I continue to be frustrated at some medical professional's dismissal of how significant gluten sensitivity can be for some people. From what I’ve read online, there seems to be a definite identification of gluten sensitivity. I guess it just needs more research to be more widely accepted. I feel like so many people just think I'm crazy when I say how gluten affects her behavior. “
I admire my friend Emily. She listened to her most powerful resource, her mother’s intuition. She followed her gut and learned what was eating at her sweet daughter’s stomach. “What’s the best part of once again going gluten-free?” I asked Emily. “I’m excited for her attention and mood to improve. I’m excited to watch her heal.” I smiled: “Be gone gluten-monster! Be gone!”
About Melanie
Melanie Potock, MA, CCC-SLPMelanie is speech language pathologist who specializes in feeding. Her work brings her into the homes and schools of her clients, kids, who for various reasons have difficulty with food or with eating. She works with kids and their parents to develop effective strategies that help children become “more adventurous eaters”. At least 50% of her clients have food allergies or intolerances, and for them, “adventurous eating” takes on a special meaning. Melanie is also the author of Happy Mealtimes with Happy Kids” and the executive producer of “Dancing in the Kitchen.”
Ever heard of “mother’s intuition?” It is that tiny voice in a mom’s head that says “hmm…something is not quite as it seems.” That voice was what drove my friend Emily to forgo her pediatrician’s relaxed approach to her young daughter’s stomach pains and embark on journey directed by her mother’s intuition. Over coffee at our local java stop, Emily described the events of the past two years to me.
Emily’s daughter, Nicky, who is now 6, began having constipation and separate periods of stomach pain at age 4. She was also having difficulty maintaining attention for age appropriate tasks, causing her parents to discuss attention deficit disorderwith their pediatrician. While the physician leaned more toward treating the symptoms of the gastrointestinal (GI) issues, Emily asked herself why her daughter was in such agony. What was causing this? Because Nicky’s paternal grandmother had a history of stomach ailments and found relief via a gluten-free diet, Nicky’s parents suspected a gluten intolerance. They took her off gluten in January 2011, and within 2 week the stomach aches and constipation went away. Interestingly, so did her difficulties with attention and her tendency to be impulsive, which is a hallmark for children with ADD.
Over time, Emily did not worry about cross contamination or the occasional gluten-filled cookie. Her daughter typically preferred to eat gluten-free foods, eating “lots of fruits and veggies, minimally processed foods” and only rarely, a food with gluten. By August 2011, Nicky had returned to daily tummy pains and the discomfort of chronic constipation. Kindergarten had started, and at first, Emily suspected the culprit to be the stress that such a big transition can cause for a child. But, by the start of 2012, mother’s intuition was shouting “Do something about this!”
Time to Act
First stop: allergy testing. A blood test for celiac, not always foolproof, came back negative. Additional blood tests and scratch tests for food allergies were negative, but further testing revealed that Nicky had the permissive gene markerfor celiac. Consequently, Emily’s next step was to take Nicky to a pediatric gastroenterologist, who ordered a series of tests to rule out a multitude of causes for Nicky’s pain, including stool testing for parasites, an ultrasound of her liver and pancreas and tests for gastroesophageal reflux disease (GERD). Again, all tests came back negative, leading Emily and her husband to consider taking one more step: an upper GI endoscopy involving anesthesia and a small bowel biopsy.
“What went through your mind when you considered this next step?” I asked my friend. Emily gazed into her coffee, taking herself back to that moment. “The risks of anesthesia. I had the choice to do it or not to do it and that felt very heavy. Ultimately, we decided to do it because it was important that we knew for sure if we needed to avoid cross contamination or food temptations.” Emily’s anguish over Nicky being 100% gluten free for life was clear. “Mel, I mourned the loss of gluten. I truly mourned it.”
Join us for Part 2 of “Follow Your Gut.”
In Part 2 of this article, Emily is instructed to do a “gluten challenge”, feeding Nicky plenty of gluten for the next 8 weeks prior to the endoscopy to ensure that the biopsy results would be accurate. While she mourned the loss of gluten, the flood of gluten over the next 2 months proved to be the most challenging aspect of this journey, as little Nicky’s symptoms became almost unbearable for a mother to watch.
Melanie Potock, MA, CCC-SLPMelanie is speech language pathologist who specializes in feeding. Her work brings her into the homes and schools of her clients, kids, who for various reasons have difficulty with food or with eating. She works with kids and their parents to develop effective strategies that help children become “more adventurous eaters”. At least 50% of her clients have food allergies or intolerances, and for them, “adventurous eating” takes on a special meaning. Melanie is also the author of Happy Mealtimes with Happy Kids” and the executive producer of “Dancing in the Kitchen.”
Last Thursday, Michelle Wie, the U.S. golf champion and phemo, announced to the Tapei Times that she has gone gluten-free. Her choice was inspired by Tennis Champ, Novak Djokovic. In March, Djokovic announced that a gluten free diet was a key reason that his tennis game has improved so dramatically over the course of that season.
“I am allergic to everything in this world, I don’t really digest food very well . . . so I just thought maybe if I cut out gluten, I can feel better because I heard that it causes inflammation, everything ... but it’s been week three and I feel a big difference.”
Wei began her career at 16 and is currently going to Stanford. She mentioned that she has no trouble balancing her class load at Stanford with her golf career.
“You know, my joints don’t feel sore as much, I digest food a lot better, my hands feel less swollen so I feel really good,” she said.
The Wall Street Journal wrote about Djokovic's rise from January 2011 to May 2011:
Djokovic's season has gone from good to great to outrageously, impossibly, unrealistically phenomenal.
Recent Studies Conducted Because of Gluten-based Illnesses
This is further evidence that supports Dr. Alessio Fasano's findings that no human being can properly digest gluten. The Tender Palate interviewed Dr. Fasano in December to help the general public become aware of and better understand his resarch.
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.
As with Djokovic, It will be interesting to watch Michelle Wie throughout this year's performance. It will also be interesting to see how the medical, research, marketing and farming industries behave as more celebrities and athletes adopt this diet.
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.
Since the FDA re-opened the comment period on the 2007 proposed rules for gluten-free labeling, the question on everyone's mind is, "Is the allowed 20 ppm really safe?" According to The University of Maryland's Center for Celiac Research, the safety limit ceilings out at 10 mg. This allows quite a large amount of gluten-free labeled foods that contain the FDA's recommended allowable amount of 20 ppm during processing. In plain English, 20 ppm allows most people with celiac disease to eat 18 slices of gluten-free bread or 9 servings of gluten-free pasta before they reach the limit of 10 mg of gluten in your food. The Center for Celiac Research has also been studying the rise of gluten intolerances. In addition to the 1 in 133 people with celiac disease, there are more than 18 million people have gluten sensitivities which range from mild to severe reactions.
“This standard has been in use in Europe for almost two decades,” says Fasano, “and the science supports its adoption in the U.S.” says Alessio Fasano, M.D., director of the University of Maryland (UM) School of Medicine’s Center for Celiac Research and an internationally renowned expert on celiac disease.
Thursday, May 24, 2012 at 7:13PM 
Melanie Potock, MA, CCC-SLPMelanie is speech language pathologist who specializes in feeding. Her work brings her into the homes and schools of her clients, kids, who for various reasons have difficulty with food or with eating. She works with kids and their parents to develop effective strategies that help children become “more adventurous eaters”. At least 50% of her clients have food allergies or intolerances, and for them, “adventurous eating” takes on a special meaning. Melanie is also the author of Happy Mealtimes with Happy Kids” and the executive producer of “Dancing in the Kitchen.”
