I remember the beginning nearly exactly. Lower GI pain that began in the afternoon, dull enough at first I tried to ignore it, and would only go away after eating dinner, coming back at nearly the same time the next day without any apparent linkage to what I had eaten. I was in the first month of my one-year graduate program for teaching at the time, age 22. I was otherwise healthy and relatively stress-free. Over the next two and a half years, without doing anything about it, the pain intensified and some days was nearly constant.
And I developed more symptoms, many of them far beyond my GI system.
After the first couple hour-long meeting with my doctor, a naturopath, she told me she highly suspected what was going on, but we’d confirm with further testing. It was nearly Thanksgiving then and some of my symptoms were overwhelming anxiety, daily headaches, acne that was far worse than I ever had as a teen, and a nearly complete inability to concentrate. Having formerly struggled with an eating disorder, I was weary of having restrictions in what I ate. Plus, I was making incredibly delicious homemade bread and pastries regularly and I didn’t enjoy the idea of changing that. So I pushed the testing off, dug in my heels, and waited to confirm or change anything until after the holidays. What we confirmed was that I was significantly depleted in nutrients despite eating normally, and highly reacting to gluten. In addition to those other symptoms above, test results also showed a bunch of the wrong type of bacteria hanging out in my system, further contributing to my complete sense of not-at-all-wellbeing. At the time I had many other life events happening with tight finances, job/career uncertainty, and an upcoming wedding halfway planned–so I didn’t push for further testing or a celiac disease biopsy like I should have. Instead, I grudgingly and not altogether stringently, took out gluten from my diet with the knowledge I had.
I felt better very very slowly, but after six months, I was only better enough to know I was still reacting to more than gluten. So we tested again and found more problem foods.
Celiac Disease is an autoimmune condition characterized by damage or destruction of the villi in the small intestine resulting in malabsorption of nutrients and widespread pathophysiological symptoms throughout the digestive tract and often in other areas of the body (1, 2)
The only current long-term treatment to successfully stop the autoimmune response that occurs in celiac disease is to strictly adhere to a life-long gluten free diet. This includes avoiding wheat and its relatives (spelt, kamut, emmer, einkorn, triticale, etc.), barley, rye, and in some individuals, oats (3). In celiac disease, the inflammatory response invoked by the gluten proteins leads to destruction of enterocytes, the cells in the small intestine, then atrophy of the intestinal villi, the tiny, fingerlike projections along the small intestine lining that enable nutrient absorption to occur.
The lining of the small intestine is one cell thick, and these cells are semi-permeable, which allows for tiny molecules of nutrients to pass through into the bloodstream. The cells of the gut lining are also joined together by what are known as tight junctions, which are supposed to be tight, but damage can cause larger particles to slip through. When the body negatively reacts to gluten proteins, chemicals that are released in their presence causes the lining of the small intestine to become much more permeable, and substances that normally would not be allowed to pass through now can, causing even more inflammation.
When the area of the body that is responsible for nutrient absorption is so critically damaged, decreased nutrient absorption quickly follows. Likewise, the immune complexes attacking the small intestine don’t just stay there. They travel throughout the body and can damage other organ systems, which is why it is common to see symptoms that are far beyond the gut in those negatively responding to gluten, such as depression or anxiety, headaches or migraines, joint and muscle pain or weakness, skin conditions, fatigue, infertility or repeat miscarriages, frequent bruising, brain fog or difficulty concentrating, osteoporosis, tooth enamel damage, canker sores, and many more associated with lack of adequate nutrients. Lastly, if not diagnosed, or one does not adhere to a strict gluten-free diet, those with celiac disease are at much more risk for developing secondary autoimmune and other diseases, such as cancer.
When gluten is no longer triggering the immune system, the enterocytes and then villi can begin to heal (3). The goal in implementing a strict gluten free diet is to heal the gut lining so nutrient depletion and widespread symptoms stop occurring. After just one meal containing gluten, symptoms can appear for up to six months in those with celiac disease, which makes paying close attention to cross contamination, and educating friends and family who prepare meals a primary concern. So too is being particularly careful about eating out at restaurants that pay strict attention to cross contamination, or that don’t prepare any food with gluten, which is rare but a real haven for those that need to avoid it.
Beyond celiac disease, there is the slightly more common gluten sensitivity (also called gluten intolerance), which often displays the same or similar symptoms as celiac disease, but does not cause intestinal damage, often will not take as long for healing and symptom remission to occur, and is not always lifelong. Gluten sensitivity also is not autoimmune, and does not appear to have a genetic linkage. When enough healing has occurred in one that is gluten sensitive but does not have celiac, the individual can often reintroduce gluten in small amounts and/or return to eating it normally.
The one caveat in determining between lifelong strict avoidance of gluten for those with celiac disease, and perhaps less stringency with those with gluten sensitivity, is that the only way to definitely diagnose those with celiac disease is with an intestinal biopsy, and damage will only be ‘complete’ enough to diagnose with daily consumption of gluten for at least six months. I had an unfortunate episode a couple years after I removed gluten in which I unknowingly was eating contaminated oatmeal every day for a month. After realizing and removing it, it still took me over six months to be symptom-free, and that very small amount of gluten daily for about 30 days was nowhere near enough gluten to be able to diagnose. So if one suspects gluten is a problem, I always recommend ruling out celiac disease before completely removing gluten from the diet.
Now, for a slightly different but similar condition—wheat allergy.
Those with wheat allergy have developed an antibody to a particular structure in wheat. Similar to a peanut allergy, symptoms can occur immediately after eating, up to within two hours later, and include swelling, itching or irritation of the mouth or throat, itching, hives, or skin rash, itchy watery eyes, GI concerns such as diarrhea, cramps, nausea, vomiting, difficulty breathing, chronic hay fever, heart palpitations, etc. Like other food allergies that cause similar reactions, even a trace of the food allergen can trigger a severe reaction, and the way your body reacts to a food allergen one time does not predict how it will react the next time. So a mild response in the past does not mean the response will always be mild, and vice versa for severe reactions.
Gluten-Free Diet for other Autoimmune Conditions
A question and/or concern that comes up routinely in those that have been diagnosed with other autoimmune conditions is why is a gluten-free diet commonly suggested if one has something like Hashimotos thyroiditis, Lupus, or others?
The answer here is slightly complicated—but the simplest way to describe it is that it is commonly believed that the gluten proteins are highly complex and difficult molecules to break down, and they are mildly inflammatory in most individuals, but highly inflammatory in others. For those individuals that already have an autoimmune response occurring in the body, an immune system that is “on alert” does not need more inflammatory molecules entering the system. That is why many feel better when removing gluten and other inflammatory foods, such as refined sugar, dairy, processed meat, etc., and load up on anti-inflammatory foods to help heal the whole system.
Sourcing Gluten-Free Products
If one does need to avoid gluten and/or wheat, pay particular attention to sourcing, packaging, and labeling of all foods, and in particular grains that might be processed in the same facilities as wheat and other gluten-containing grains. Flours that are certified gluten-free, or that at least say on the label they are not processed on a line that also processes gluten-containing grains is essential –that’s how I got into trouble with the oats! This means purchasing flours and grains from bulk bins needs to be done with care, as well as knowing the source and details of the processors so as to avoid cross-contamination. Edison Grainery (my favorite source currently), Arrowhead Mills, Bob’s Red Mill (which has two lines so pay attention to whether food is from the gluten-free line!), and One Degree Organics are great companies, but there are many more to be found as long as you read the ingredient list, look for a gluten-free certification, and read the small print about allergen cross-contamination.
I hope this informational article clarifies some of the myths and misconceptions about these challenging dietary conditions. Feel free to comment below or contact me with your further questions or for more information on working with me if you or a loved one are concerned about gluten and/or wheat. In addition to my own experience mentioned above, I studied gluten-associated pathophysiologies extensively while in graduate school for clinical nutrition.
1: Lipski, L. (2012). Digestive Wellness (4th ed.). New York, NY: McGraw Hill.
2: Hardy, M.Y. and Tye-Din, J.A. (2016). Coeliac disease: a unique model for investigating broken tolerance in autoimmunity. Clinical and Translational Immunology, 5(11): e112. doi: 10.1038/ct.2016.58.
3: Barker, J. M., & Liu, E. (2008). Celiac Disease: Pathophysiology, Clinical Manifestations and Associated Autoimmune Conditions. Advances in Pediatrics, 55, 349–365. http://doi.org/10.1016/j.yapd.2008.07.001.