Once diagnosed with celiac, switching to a gluten-free diet is the best option. A gluten-free diet is supposed to reverse the damages caused by gluten exposure, but perhaps, not all of them. For some, specific symptoms continue to persist long after they have given up their favorite breakfast cereal or loaf of bread. In a desperate attempt to feel better, some are even looking for gluten-free labels, or GMO-free, even on water bottles. But, even going that far to feel better is not helping in some cases.
Consulting a physician does not always solve the problem. Although, the physician may say that gluten maybe somehow entering the body in small amounts, this is often not the case. Considering that primarily wheat, rye, and barley are the primary sources, out of these, wheat is the only challenging element to exclude, due to its widespread use in different sauces, baked items, and cuisine.
So what is going wrong? Why are some people continuing to suffer from gastrointestinal symptoms like indigestion, bloating, fatigue, even when they have excluded all possible sources of gluten?
The answer to is that celiac disease is more complicated than we ever thought, and some of the harms caused by it continue to haunt even years after the diagnosis and gluten exclusion. Leaky gut syndrome, chronic inflammation, comorbidities, and dysbiosis are just a few complications that can continue to cause trouble, and a gluten-free diet is not enough to tackle them.
Inflammation and leaky gut syndrome may linger on for years
When the genetically predisposed person eats food that has a high content of gluten, at least two types of reactions occur in the intestine. First, the immune system starts attacking the gluten, and the immune mediators released in the process also damage the intestinal structures like villi. Secondly, these inflammatory mediators also cause the so-called leaky gut syndrome and the widening of gaps in tight-junctions of intestinal cells.
Destruction of villi causes malabsorption syndrome; villi not only absorb many micronutrients but they also secrete many essential compounds needed for digestion and optimal health. Widening of tight junctions means that many of the large molecules that would not enter the bloodstream in healthy subjects are able to make into it. These processes may linger for years, or maybe forever in some subjects.
Worst of all, genes that are responsible for celiac disease also increase the risk of numerous other disorders. Celiac disease is often associated with other autoimmune diseases of internal organs. Thus, the gluten-free diet alone may not suppress all the systemic and intestinal inflammatory responses1.
In one of the studies Zanini et al., with the help of a biopsy, they assessed if the complete resolution of inflammatory changes is possible in celiac disease by only adopting a gluten-free diet. They also studied whether this recovery is time bound. For this purpose, they enrolled the subjects who were complaining about the gastrointestinal symptoms even after being on the gluten-free diet for 12-18 months. They re-biopsied one group of the patients after three months of observation, while another group was re-biopsied after two years, with them all being on a strict gluten-free diet.The study demonstrated that inflammation was still present in both groups of patientsa nd the persistence of this inflammation was not related to the length of a gluten-free diet. Thus, the study demonstrated that although people do benefit from gluten-free food, for many, inflammation persists over an extended period of time. So, a complete mucosal recovery does not occur, hence the persistence of gastrointestinal symptoms2.
Role of intestinal dysbiosis in celiac disease
Most of the observational and clinical studies have shown that the alterations in intestinal flora in those living with celiac, which shows that it is entirely possible that dysbiosis has a role in the persistence of symptoms of celiac disease in those on a gluten-free diet.
When the inflammatory processes start in the intestine due to the exposure of gluten, they destroy many beneficial bacteria, and at the same time, there is an overgrowth of many not-so-good bacteria. This harmful bacteria would break various food products in the wrong way, thus causing indigestion, bloating, and diarrhea.
Studies have found that with celiac disease, the population of Bifidobacterium spp. and B. longum is reduced, while the population of Bacteroides is increased. Studies have shown a higher number of enterobacteria and staphylococci in celiac disease. There is a number of studies indicating the difference in the microbiota of healthy people and those living with celiac disease, and thus suggesting that altered microbiota may have a role to play in the persistence of symptoms of celiac disease3.
There are various reasons for these changes in microbiota and persistence of symptoms, though dietary changes like switching to a gluten-free diet may also be partially responsible for such alterations, since gluten-free diet means low consumption of dietary fiber and specific micronutrients.
Correcting the intestinal dysbiosis is considered to be challenging for modern medical science, as it is something that is still not fully understood. However, various clinical trials involving the use of probiotics have shown that they have a beneficial effect by improving the symptoms and inflammatory markers in blood and gut.
Other causes of persistent symptoms in celiac
Why the symptoms of celiac disease continue persist in a large number of cases, even on a gluten-free diet, is not easy to understand. It is the result of altered microbiota, continued inflammatory response, development of secondary diseases like lactose intolerance, and much more. The cause of persistence of symptoms would differ in each.
Just to understand the various reasons for thepersistence of such symptoms Dewar et al. studied the 112 cases of celiac that failed to benefit from thegluten-free diet. These were the subjects with continued symptoms even after one and a half year of gluten-free diet.
In their trial, Dewar et al. noted that though most people living with celiac claim that they are following a strict gluten-free diet, it is far from accurate in most cases. Their research demonstrated that 45% of those with persistent symptoms were still ingesting gluten in small amounts, whether intentionally or unintentionally. However, for more than half of the cases there were different reasons.
Dewar et al. found that out of 112 patients, 12 were wrongly diagnosed with celiac disease and failed to respond to a gluten-free diet. The reason for misdiagnosis lies in the absence of any specific test; in fact, many people may test positive for antibodies typically in celiac disease, even when they do not have the disease. Further, they found that 12% of persistent cases were suffering from microscopic colitis, whereas, 9% had an overgrowth of harmful bacteria. A small number of cases developed more severe conditions like lactose intolerance or even lymphoma.
On a more encouraging side, research by Dewar et al. demonstrated that in more than 90% of cases, the exact cause of persistent symptoms could be understood and treated4.
So, it would be wise to say that if the symptoms of celiac disease persist, one must look for other causes like lactose intolerance, altered microbiota in the gut, and continued inflammation due to other reasons. They should also take additional cautions like excluding dairy products and taking probiotics to help. If you are still feeling uneasy with celiac disease, even after switching to gluten-free food, it is time to consider some extra steps. Using complementary medicine and supplements to reduce inflammation of gut may also be an option that can help.
1. Lauret E, Rodrigo L. Celiac Disease and Autoimmune-Associated Conditions. BioMed Res Int. 2013;2013:17. doi:10.1155/2013/127589
2. Zanini B, Marullo M, Villanacci V, et al. Persistent Intraepithelial Lymphocytosis in Celiac Patients Adhering to Gluten-Free Diet Is Not Abolished Despite a Gluten Contamination Elimination Diet. Nutrients. 2016;8(9). doi:10.3390/nu8090525
3. Cenit MC, Olivares M, Codoñer-Franch P, Sanz Y. Intestinal Microbiota and Celiac Disease: Cause, Consequence or Co-Evolution? Nutrients. 2015;7(8):6900-6923. doi:10.3390/nu7085314
4. Dewar DH, Donnelly SC, McLaughlin SD, Johnson MW, Ellis HJ, Ciclitira PJ. Celiac disease: Management of persistent symptoms in patients on a gluten-free diet. World J Gastroenterol WJG. 2012;18(12):1348-1356. doi:10.3748/wjg.v18.i12.1348