Non-responsive celiac disease – when eating gluten-free is not enough

Many people are drawn to the Paleo diet because they are looking for a solution for their personal health struggles. Removing gluten alone, one of the main proteins found in many grains but especially wheat, barley, oats and rye, can often make a big difference in the way you feel, no matter what kind of problems you’re dealing with. However, some people need to go a step further and also remove dairy, vegetable oils and possibly FODMAPs as well to really optimize their health and quality of life.

In the case of celiac disease, an autoimmune condition where the body starts attacking your own intestines when exposed to gluten, a strict gluten-free diet has been the only known treatment for the last decades. As much as going gluten-free can help lessen the autoimmune attack of the intestines, it is unfortunately often not enough to repair and heal the damages.

Most doctors will blame your remaining symptoms on lack of compliance, but is it possible that as many as two thirds of the celiacs trying to go gluten-free are not able to get it right? Sixty-six percent is the percentage of people with celiac disease still suffering from intestinal damage after over 2 years of following a strict gluten-free diet, according to a study published in the June 2010 issue of the American Journal of Gastroenterology. 1

If you have celiac disease and still experience digestive symptoms despite going gluten-free, a problem referred to as “non-responsive celiac disease,” the following strategies could help you regain control of your digestive health, which is the first step to reach optimal overall health… because health truly starts in the gut!

Here are 5 of the most common causes for refractory celiac symptoms:

1. Hidden Gluten

If you have celiac disease, you’re probably aware of the potential cross-contamination issues that can easily occur in your kitchen or at the restaurant. Preparing foods using the same cutting boards, knifes, pans, plates and utensils used to handle foods containing the dreadful intestinal hole puncher that is gluten can be enough to perpetuate damages in the gut. It takes less gluten than the size of a breadcrumb to induce a leaky gut in people with celiac disease, whether you suffer from the accompanying intestinal problems or not. Hint: cross-contamination can be fairly silent in some people but could be the missing link to feeling your best.

Besides cross-contamination, gluten can also be hiding where you least expect it, trying to ambush you around the corner. A thorough inspection of everything around you will be necessary to identify all potential suspects. The list of the most common villains includes the glue of stamps and envelopes, communion wafers (even the gluten-free option is not entirely free of gluten) and even some wine (the barrel is sometimes sealed with a wheat-based paste). For many celiacs, handling pet kibbles or using personal care and beauty products containing wheat-derived ingredients is enough to cause injury. The bottom line is that you should always read the ingredient lists for everything that either goes into your body or is in contact with your skin.

2. Gluten-Free “Foods”

Gluten-free food products can make the transition to a gluten-free diet easier, but the problem is that most of the gluten-free breads, pasta, cereals, granola bars and baked goods contain many ingredients, other than gluten, that could be contributing to your digestive problems. I don’t consider grains as REAL Food, and that goes for gluten-free grains too.

Do a simple test: take any gluten-free food products you can find and read the ingredient list. Does it look like real food to you? How many processed ingredients are there? A ton! The thickeners (gums, carrageenan…), gluten-free grains (rice, quinoa, millet…) and sweeteners (high-fructose corn syrup, agave syrup and all kinds of sugars) are only a few examples of ingredients you might be reacting to.

In addition to containing these potentially problematic ingredients, gluten-free grains and ingredients found in gluten-free food products are often contaminated with trace amounts of gluten. Even if a product is labelled “gluten-free,” it is still allowed to contain up to 20 ppm of gluten per serving, which could be enough to perpetuate symptoms in some people with celiac disease.

Another important thing to consider when consuming gluten-free food products is that they are very poor in nutrients, especially the ones your body so desperately needs to heal and seal your leaky gut. Switch from these packaged foods to more nutrient-dense Paleo foods that are naturally free of gluten instead.

3. FODMAPs

This hard-to-remember acronym which has become a new buzzword in the field of digestive health could also help explain many cases of non-responsive celiac disease. FODMAPs stand for Fermentable Oligo-, Di-, Mono-Saccharides And Polyols and represent a family of carbohydrates found in various fruits, vegetables, honey, coconut sugar and many nuts.

For example, onions, garlic, Brussels sprouts, cauliflower, asparagus, apple, watermelon, pear, mangoes, peaches, honey and some nuts are high in FODMAPs and could be the reason for your “unexplained” bloating, constipation, diarrhea and cramping. Stick to lower-FODMAP options, such as carrots, zucchini, the green part of green onions, banana and blueberries, for a few weeks to see if it could be the simple change your body needed.

4. SIBO

Small intestinal bacterial overgrowth (SIBO) occurs when too many bacteria decide to take residence in your small intestines, resulting in excess fermentation of the food you eat before your even get a chance to absorb it. A study showed that SIBO is present in at least two thirds of the patients with celiac disease and gastrointestinal symptoms persisting even after gluten withdrawal. 2

If you have SIBO, you can experience gut issues not only when you eat FODMAP-containing foods, but also after eating any higher-carb foods (including safe starches), even if lower in FODMAPs, such as plantain, potatoes, white rice, winter squashes and maple syrup.

You can get tested for SIBO with a simple lactulose or glucose breath test. A lower-carbohydrate gut-healing diet often in combination with some forms of antibiotics (herbal antimicrobials or gut-specific antibiotics like Rifaximin) are often required to get SIBO under control and get rid of the bloating, abdominal pain and abnormal bowel movements.

5. Lack of Gut-Healing Factors

The last piece of the puzzle that may be missing for your non-responsive celiac disease is the inclusion of gut-healing and anti-inflammatory factors in your life. For example, a recent study showed that adopting a real food-based diet for 3 to 6 months allowed 82% of non-responsive celiacs to finally heal their gut. 3 The diet studied was free of processed foods, free of dairy for the initial 4 weeks and almost completely grain-free with the exception of white and brown rice.

This study shows that a Paleo lifestyle might help achieve similar results, or probably even better by the exclusion of inflammatory omega-6 oils (corn oil, soybean oil and peanut oil) and the complete exclusion of grains and dairy. In addition, other gut-healing factors that are part of the Paleo lifestyle, such as the regular consumption of homemade bone broth, getting adequate vitamin D as well as focusing on sleep quality and stress management, can all boost your ability of recovering from non-responsive celiac disease.

Bottom Line

If you want your digestive health to be optimal with celiac disease, it might be time to consider other factors than gluten alone. Abnormal digestion is a sign that your health is not optimal. Health starts in the gut, so make sure you get your digestion in order if you want to achieve optimal health.

If you need extra help to get there:

* Article originally published in Paleo Magazine.

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References

1. Rubio-Tapia A, Rahim MW, et al. Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet. Am J Gastroenterology. 2010;105(6):1412-1420.

2. Tursi A, Brandimarte G and Giorgetti GM. High Prevalence of small intestinal bacterial overgrwoth in celiac patients with persistence of gastrointestinal symptoms after gluten withdrawal. Am J Gastroenterology. 2003;98:839-843.

3. Hollon JR, Cureton PA, et al. Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients. BMC Gastroenterology. 2013;13:40.