Joan Rothchild Hardin
Celiac Disease, Gluten Sensitivity, & Gluten Allergy
Gluten is a protein found in many grains and seeds, principally wheat, rye, barley, spelt, kamut, and triticale. It is the composite of the storage proteins gliadin and a glutenin conjoined with starch in the endosperm of various grass-related grains. (Wikipedia, 5/29/2015) Although gluten-containing foods are an important part of the modern diet, many humans have difficulty digesting gluten. The effects of this trouble can be immediately apparent in some people while in others, deleterious reactions to gluten make themselves known only over time. As many as 20 million Americans may be sensitive to gluten. Another 3 million have celiac disease and 400,000 – 600,000 are allergic to wheat. (Woodward, 2011) That’s a lot of people!
A BRIEF HISTORY OF GLUTEN IN THE HUMAN DIET (Guthrie, 2010) The consumption of grains is relatively new to our diet, dating from when we stopped being nomadic hunter-gatherers, settled down and started growing crops and domesticating animals, 15,000 years ago at the earliest. Before that time, our ancestors mostly ate the meat of animals they hunted, along with wild fruits, plants, tubers, nuts, and seeds they foraged. The planting of dietary grains as crops originated in Mesopotamia. Some of us have adapted well to our largely grain-filled diets. Many of us have not. For example, about 30% of northern Europeans carry genes for gluten problems. Furthermore, the wheat we eat today is also considerably changed. In today’s modern version of wheat, up to 90% of its protein content now consists of gluten – 10 times what it was even 100 years ago. Einkorn (ancient wheat) vs Modern Wheat
In people with celiac disease, ingesting gluten causes the body to attack the small intestine. For the 30-40% of people who have a non-celiac gluten intolerance, the immune system mistakes gluten for a foreign body (a pathogenic bacteria or virus) and mobilizes an arsenal of antibodies to attack the ‘invader’. For me, even the small amount of gluten on French fries cooked in oil shared by a flour-containing food (eg, something breaded) is enough to set off a full blown gluten reaction. On average, an American consumes about 150 pounds of wheat each year. We get it in the processed foods we rely on, breads, baked goods, pasta. There’s also gluten in many commercially produced seasonings and most bacon. Wheat flour is used widely as a breading and thickening agent. I recently learned the hard way that even some nutritional supplements contain gluten. Think about what you ate today. Did you have toast, a muffin, a bagel, pancakes, cereal, oatmeal (usually processed in factories that also process wheat) for breakfast? A sandwich, pizza, a Big Mac, soup thickened with flour, soy sauce (it’s brewed with wheat) for lunch? Cookies, pretzels or a doughnut as a snack? A beer (brewed with wheat) after work? Pasta and some cake for dinner? That’s gluten in every meal you ate! Here’s a list of foods containing gluten. It’s a good start but by no means complete. Gluten can also be a hidden ingredient in some very unexpected places – your lipstick, cosmetics, hair products, toothpastes, marinades, sauces, pretty much all processed foods, textured vegetable protein, seitan, imitation crab stick, MSG, ketchup, candies, communion wafers, some pharmaceuticals and nutritional supplements, Play Doh … and many, many more.
CELIAC DISEASE (Fasano et al, 2003)
Celiac disease (CD) is an autoimmune disorder of the small intestine triggered in genetically susceptible people by the ingestion of gluten. Specifically, CD is a reaction to the gliadin, a protein which is the soluble part of gluten, found in wheat and several other cereals in the grass genus Triticum. See this University of Chicago Celiac Disease Center site for a list of the approximately 300 symptoms and conditions potentially due to celiac disease. You’ll see why trying to diagnose celiac disease from symptoms alone can be quite confusing. The long term health effects of undiagnosed CD can be quite serious. Biopsy of the mucosal lining of a healthy small intestine: long villi providing a large area for digestion and absorption of nutrients
Biopsy of a small intestine with celiac disease: blunted villi, crypt hyperplasia, and lymphocyte infiltration of crypts
Although common in Europe, until 2003, celiac disease was thought to be rare in the United States.
Research led by world-renowned expert on celiac disease, Alessio Fasano, MD, corrected that assumption. Dr Fasano is Chief, Division of Pediatric Gastroenterology and Nutrition at Massachusetts General Hospital for Children and Professor of Pediatric Gastroenterology and the W. Allan Walker Chair of Pediatrics at Harvard Medical School.
Fasano conducted the largest rigorous study ever performed to establish the prevalence of celiac disease in at-risk and not-at-risk groups in the US. 13,145 subjects from 32 states participated in this study: 3,236 symptomatic patients (with either GI symptoms or a disorder associated with CD), 4,508 1st degree and 1,275 2nd degree relatives of patients with biopsy-proven CD, and 4,126 not-at-risk individuals. The age distribution of the study’s subjects, infants to 65 and older, corresponded with the age distribution of the population as reported in the US Census of 2000. Subjects defined as ‘at-risk’ were relatives of patients with CD or patients who presented with CD-associated symptoms (diarrhea, abdominal pain, and constipation) or with CD-associated disorders (type 1 diabetes mellitus, Down syndrome, anemia, arthritis, osteoporosis, infertility, and short stature). The results suggested that celiac disease: “… occurs frequently not only in patients with gastrointestinal symptoms, but also in first- and second-degree relatives and patients with numerous common disorders even in the absence of gastrointestinal symptoms. The prevalence of CD in symptomatic patients and not-at-risk subjects was similar to that reported in Europe. Celiac disease appears to be a more common but neglected disorder than has generally been recognized in the United States…. “The prevalence of CD was as high in first- and second-degree relatives without symptoms as in relatives with symptoms, highlighting the importance of genetic predisposition as a risk factor for CD…. ” If CD is as common in the United States as our study suggests, one must question why it is not diagnosed more frequently. Foremost among the possible explanations is that if physicians believe that CD is rare, they are less likely to test for it. A failure by physicians to appreciate that many individuals with the disease initially present without gastrointestinal symptoms is another reason why CD testing may not be performed…. “The prevalence of CD in symptomatic patients and not-at-risk subjects was similar to that reported in Europe. Given the high morbidity and mortality related to untreated CD and the prolonged delay in diagnosis in the United States, serologic testing of at-risk patients (ie, case finding) is important to alleviate unnecessary suffering, prevent complications, and improve the quality of life of a multitude of individuals with CD.” Prevalence of Celiac Disease Worldwide
The number of people clinically diagnosed with celiac disease has been rising dramatically around the world and is now considered a major public health issue. In 2010, diagnosed celiac was four times more common than it had been 60 years ago, affecting about one in 100 people. (Mayo Clinic, 2010) The ratio of clinically diagnosed to undiagnosed cases of CD (people who have celiac reactions to gluten, often without the usual GI symptoms) is now believed to be 1:3 to 1:5. (Catassi et al, 2014) GLUTEN SENSITIVITY (AKA GLUTEN INTOLERANCE) (Woodward, 2011)
In 2011, Alicia Woodward, the editor of Living Without, interviewed Dr Fasano about his research that showed gluten sensitivity is real and a medical condition distinct from celiac disease. When she asked him about the import of having demonstrated the existence of gluten sensitivity, Dr Fasano replied: “In my humble opinion, it’s a big deal. First, we’ve moved gluten sensitivity, also called gluten intolerance, from a nebulous condition to a distinct entity—and one that’s very distinct from celiac disease. Gluten sensitivity affects 6 to 7 times more people than celiac disease so the impact is tremendous. Second, we now understand that reactions to gluten are on a spectrum. The immune system responds to gluten in different ways depending on who you are and your genetic disposition.
Third, there’s a lot of confusion in terms of gluten reactions. Gluten and autism, gluten and schizophrenia—is there a link or not? These debates are on their way to being settled. And fourth and most important, for the first time we can advise those people who test negative for celiac disease but insist they’re having a bad reaction to gluten that there may be something there, that they’re not making it up, that they’re not hypochondriacs. Once it’s established that a patient has a bad reaction to gluten, it’s important to determine which part of the spectrum he or she is on before engaging in treatment, which is the gluten-free diet.”
Given that celiac disease, gluten sensitivity and gluten allergy share many clinical symptoms, Woodward wondered if people can move along the spectrum to a more serious version of difficulty with gluten: “No, I don’t think so. The three main conditions—celiac disease, gluten sensitivity, wheat allergy—are based on very different mechanisms in the immune system. Given that fact, it’s hard to imagine the possibility that you could jump from one to the other.” Fasano had this to say about why so many humans are having such negative reactions to gluten after generations of wheat consumption: “Although we’ve been eating wheat for thousands of years, we are not engineered to digest gluten. We are able to completely digest every protein we put in our mouths with the exception of one—and that’s gluten. Gluten is a weird protein. We don’t have the enzymes to dismantle it completely, leaving undigested peptides that can be harmful. The immune system may perceive them as an enemy and mount an immune response.” Fasano offered an explanation for why we’re now seeing such an explosion of gluten-related health problems: “Two components are coming together to create this perfect storm. First, the grains we’re eating have changed dramatically. In our great-grandparents era, wheat contained very low amounts of gluten and it was harvested once a year. Now we’ve engineered our grains to substantially increase yields and contain characteristics, like more elasticity, that we like. We’re susceptible to the consequences of these extremely rich, gluten-containing grains. Second, and this applies to the prevalence of celiac disease that’s increased 4-fold in the last 40 years, is the upward trend we’re seeing in all autoimmune diseases. We’re changing our environment faster than our bodies can adapt to it.” Woodward mentioned that she’d heard him say gluten sensitivity is where celiac disease was 30 years ago: “It’s déjà vu. The patients, as usual, were visionary, telling us this stuff existed but healthcare professionals were skeptical. The confusion surrounding gluten sensitivity—testing, biomarkers—is exactly the same confusion we had around celiac disease 30 years ago. So we’re starting all over again now.” Symptoms of Gluten Sensitivity: Most patients with gluten sensitivity reported 2 or more symptoms (Fasano et al, 2011)
See Q & A with Alessio Fasano, MD: The latest on gluten sensitivity and celiac disease for the entire interview. See Divergence of gut permeability and mucosal immune gene expression in two gluten-associated conditions: celiac disease and gluten sensitivity to read about Fasano et al’s study comparing celiac disease and gluten sensitivity. It’s a long scientific article but you can skip down to the short Conclusions section if you wish. The researchers concluded that CD and GS are “distinct clinical entities caused by different intestinal mucosal responses to gluten.” “CD results from a complex, and as yet undetermined, interplay of increased intestinal permeability, mucosal damage, environmental factors in addition to gluten, and genetic predisposition” while “GS is associated with prevalent activation of an innate immune response.” (Sapone et al, 2011) GLUTEN AND WHEAT ALLERGY (Mayo Clinic, 2015) (UCLA, 2015)
A gluten allergy is a specific, reproducible immune response to ingesting foods containing wheat or other sources of gluten – or, in some cases, even from inhaling gluten-containing flour. Wheat (along with peanuts, tree nuts, milk, soy, egg, fish, and shellfish) is one of the most common of the eight major recognized food allergens, responsible for 90% of all IgE (immunoglobulin E) – mediated food allergies. In people with an IgE-mediated allergy to the gliadin found in gluten, exposure causes the release of antibodies to try to neutralize the gliadin. More rarely, the immune response to gluten may result from other specialized immune pathways (non-IgE mediated). A wheat allergy typically presents as a food allergy but can also be a contact allergy (say from occupational exposure to wheat). Like all allergies, wheat allergy involves IgE and mast cell response. “Typically the allergy is limited to the seed storage proteins of wheat, some reactions are restricted to wheat proteins, while others can react across many varieties of seeds and other plant tissues. Wheat allergy may be a misnomer since there are many allergenic components in wheat, for example serine protease inhibitors, glutelins and prolamins and different responses are often attributed to different proteins. Twenty-seven potential wheat allergens have been successfully identified.” (Wikipedia, 2/18/2015) How the body reacts to an allergen
Symptoms of a gluten allergy develop within a few hours, often a few minutes after exposure, and include:
Swelling, itching or irritation of the mouth or throat
Hives, itchy rash or swelling of the skin
Itchy, watery eyes
Cramps, nausea or vomiting
Some people allergic to gluten may also experience anaphylaxis, a life-threatening allergic reaction. Symptoms of anaphylaxis include:
Swelling or tightness of the throat
Chest pain or tightness
Severe difficulty breathing
Pale, blue skin color
Dizziness or fainting
Comparison of Gluten-Related Disorders
TESTING FOR GLUTEN PROBLEMS While researching this post, I encountered conflicting information on the best ways to test for celiac disease and gluten allergy – and, in the case of gluten sensitivity, whether there even IS a test (see Update below). If you’re interested in getting tested, you may find this article by Integrative Medicine pioneer J.E. Williams, OMD, helpful: Learn the best tests for celiac disease and non-celiac gluten sensitivity. Update: In 2013 Dr Fasano reported he was confident that a clinical trial being conducted by his Center for Celiac Research, in collaboration with Second University of Naples, would identify a biomarker for non-celiac gluten sensitivity and that the discovery of such a biomarker would lead to the development of diagnostic tests for the condition. Patients were being enrolled for the clinical trial in January 2013. (Anderson, 2014). As far as I can tell, the results haven’t been published yet.
Many thanks to Frank Lipman, MD, for pointing me to Alessio Fasano’s work on celiac disease, gluten sensitivity and gluten allergy.
REFERENCES Anderson, J. (2014). Dr. Fasano: Gluten Sensitivity Biomarker Likely Coming. See: http://celiacdisease.about.com/od/glutenintolerance/fl/Dr-Fasano-Gluten-Sensitivity-Biomarker-Likely-Coming-Soon.htm Catassi, C. et al. (2014). The New Epidemiology of Celiac Disease. Journal of Pediatric Gastroenterology & Nutrition, 59, S7-9. See: http://journals.lww.com/jpgn/Fulltext/2014/07001/The_New_Epidemiology_of_Celiac_Disease.5.aspx Fasano, A. et al. (2003). Prevalence of Celiac Disease in At-Risk and Not-At-Risk Groups in the United States: A Large Multicenter Study. Archives of Internal Medicine, 163:3, 286-292. See: http://archinte.jamanetwork.com/article.aspx?articleID=215079 Guthrie, C. (2010). GLUTEN: THE WHOLE STORY. See: https://experiencelife.com/article/gluten-the-whole-story/ Mayo Clinic. (2010). CELIAC DISEASE: ON THE RISE. See: http://www.mayo.edu/research/discoverys-edge/celiac-disease-rise Mayo Clinic. (2015). Wheat allergy. See: http://www.mayoclinic.org/diseases-conditions/wheat-allergy/basics/definition/con-20031834 Misty. (2009). List of Foods Containing Gluten. See: http://www.whatcontainsgluten.com/2009/04/list-of-foods-containing-gluten.html Sapone, A. et al. (2011). Divergence of gut permeability and mucosal immune gene expression in two gluten-associated conditions: celiac disease and gluten sensitivity. BioMed Central Medicine, 9:23. See: http://www.biomedcentral.com/1741-7015/9/23 UCLA Division of Digestive Diseases. (2015). Celiac vs Gluten-Sensitivity vs Wheat Allergies. See: http://gastro.ucla.edu/site.cfm?id=281 University of Chicago Celiac Disease Center. (undated). Symptoms and conditions potentially due to celiac disease. See: http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf Wikipedia. (5/29/2015). Gluten. See: http://en.wikipedia.org/wiki/Gluten Wikipedia. (2/18/2015). Wheat Allergy. See: http://en.wikipedia.org/wiki/Wheat_allergy Williams, J.E. (2015). LEARN THE BEST TESTS FOR CELIAC DISEASE AND NON-CELIAC GLUTEN SENSITIVITY. See: http://renegadehealth.com/blog/2015/04/24/learn-the-best-tests-for-celiac-disease-and-non-celiac-gluten-sensitivity Woodward, Al. (2011). Q & A with Alessio Fasano, MD: The latest on gluten sensitivity and celiac disease. See: http://www.glutenfreeandmore.com/issues/4_15/qa_augsep11-2554-1.html © Copyright 2015 Joan Rothchild Hardin. All Rights Reserved.
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