Up to 30% of people who have had covid, continue to have symptoms after the main illness passes. Some providers recommend a gluten-free diet to help with these lingering symptoms. This line of thinking may stem from an opinion paper discussing the gluten-free diet and COVID. Or it may be a result of a connection being seen between Covid and Dysautonomia– a neurologic problem that can develop after a COVID-19 infection. A gluten-free diet has been shown to help some people with dysautonomia. This may be contributing to the trend. Most of these people are being put on gluten-free diets without testing for celiac disease.
Why does that matter? It does.
Over 3 million people follow a gluten-free diet in the U.S. alone. Most of them have not been properly tested for celiac disease.
Self-diagnosis of gluten intolerance is common. That isn’t necessarily a good thing. Before diagnosing gluten intolerance*, testing must first be done to eliminate the possibility of celiac disease. Not doing so is risky. While the internet may tell you differently, there currently is no valid gluten intolerance test. Let’s clear things up on how to test if you think you are reacting to gluten.
Ten years ago, gluten was a foreign word to most people. Today it is part of mainstream culture. Gluten-related news and health articles stream across our computer screens. Unfortunately, online health advice spreads faster than scientifically sound medical information. Too frequently, this results in people skipping valid testing and self-diagnosing gluten intolerance, sometimes with their practitioners’ encouragement.
* The correct medical terminology is gluten sensitivity or non-celiac gluten sensitivity but for purposes of this article the term “gluten intolerance” will be used primarily. This is because it is more frequently used by the public.
Inflammation: the root cause
Covid-19 and The Gluten-Free Diet
There is currently no research on a gluten-free diet helping COVID-19 symptoms. It may or may not be helpful. The Gluten-Free Diet has been shown to lower inflammation in some people. If you are experiencing lingering symptoms after a COVID infection, a gluten-free diet may be tried after testing for celiac disease.
Testing for celiac disease prior to starting the diet is important. Celiac disease can be triggered by viral infections. We do not know yet if Covid-19 can trigger celiac disease. This makes testing even more important.
Many Practitioners Are Still Not Testing
Most of the providers I have seen recommending the gluten-free diet to help with post-Covid-19 symptoms are doing no testing to rule out celiac disease.
Research sheds light on the risks of self-diagnosis of gluten intolerance without testing. In the study, 68% of people self-diagnosed had not been tested for celiac disease before being labeled ” gluten intolerant”. If they were placed on a gluten-free diet by an alternative health practitioner, that number goes up to 70%. General practitioners (MDs) did not fare much better; 58% did not complete appropriate celiac disease testing for their patients before giving them a gluten intolerance diagnosis. Dietitians were the best at ensuring proper diagnosis before labeling someone with a gluten intolerance diagnosis; however, even dietitians still failed to rule out celiac disease 43% of the time.
The Number Of People Incorrectly Diagnosed With Gluten Intolerance Is High
Three-quarters of the people who report gluten intolerance do not fulfill the criteria for its diagnosis. No one knows the true incidence of gluten intolerance because there is no valid test to diagnose it. It appears to be far more common than celiac disease, but the actual prevalence is unknown. An article in Scientific American addresses the current understanding of gluten intolerance, highlighting the possibility that the condition is misnamed and that the symptoms associated with it may be due to other wheat components.
Why People Self-Diagnose Gluten Intolerance
For years, patients have struggled to get tested for celiac disease due to the medical community’s lack of knowledge about celiac disease and gluten intolerance. Physician understanding of gluten-related disorders is increasing, but knowledge is still lacking. An increasing number of people are self-diagnosing gluten intolerance without appropriate testing for celiac disease.
The probable reasons for this trend are many. Friends describe the benefits they’ve achieved with a gluten-free diet, so others aim for similar results. Information abounds on the Internet, so evaluation from health care providers is not always deemed necessary. Books and media outlets tout miraculous cures with gluten-free diets, so people follow suit and try it out.
Unfortunately, medical practitioners are contributing to the wave of self-diagnoses. Physicians, dietitians, and alternative practitioners advise their patients to initiate a gluten-free diet without adequate celiac disease evaluation. Often, no testing at all is done. Practitioners often don’t understand the importance of ruling out celiac disease before recommending a gluten-free diet. We can’t easily influence health claims on the Internet or recommendations by friends, but we can educate practitioners and advocate for ourselves.
Most People On A Gluten-Free Diet Do Not Strictly Follow It
I mentioned earlier the importance of differentiating celiac disease from gluten intolerance. Failure to strictly follow a gluten-free diet if you have celiac disease increases the risk of osteoporosis, other autoimmune diseases, delayed growth, cancer, and even death. We don’t know the risks of dietary non-compliance in gluten intolerance, but they do not appear equal. In this study, only 58% of participants admitted to strictly following the gluten-free diet.
If celiac disease is present but undiagnosed, this low level of compliance is dangerous. Compliance with the gluten-free diet is challenging. It is socially difficult, financially burdensome, and requires constant vigilance. If an appropriate diagnosis of celiac disease is made, compliance is more likely.
Many People Still Have Symptoms After Starting A Gluten-Free Diet
One out of four people in the study were still symptomatic even after initiating a gluten-free diet. Perhaps gluten was not the culprit. This is a common scenario for people with FODMAP intolerance. Instituting a gluten-free diet will help but not eliminate symptoms when the real trigger is the carbohydrate component, not the gluten protein. Other possible culprits in gluten sensitivity include ATI proteins or specific amino acids, all emerging players in the research surrounding NCGS.
A missed diagnosis of celiac disease is vitally important. Without an official diagnosis, patients may not be as vigilant on their diet as they need to be. There are many reasons for ongoing symptoms on a gluten-free diet, and some are addressed in my past column “Top 5 Reasons for Persistent Symptoms after ‘Going Gluten-Free.’” If the differentiation between celiac disease and gluten intolerance is made initially, teasing out the reason for ongoing symptoms later is easier.
Testing For Gluten Intolerance
There is no valid test for gluten intolerance. Research is showing there are several reasons for gluten intolerance. None of them have actual tests to diagnose them. If you see tests for gluten intolerance online, please do not waste your money. As the research continues, tests will be developed. Right now, any test for gluten intolerance that you pay for is only helping the company’s bank accounts and not your health.
According to experts on gluten-related disorders, an official diagnosis of non-celiac gluten sensitivity requires eliminating celiac disease as a cause of symptoms. This must be done with validated tests. Once celiac disease, food allergies, and other possible causes are ruled out, a person is deemed to have gluten-sensitive if their symptoms are relieved by a gluten-free diet.
More Research is Needed
It is important to note the Australian study’s limitations on non-celiac gluten sensitivity to allow an objective perspective. Eighty-eight percent of the participants were females, with a mean age of 43.5. Applying the data to the general population cannot be recommended. And, because it was done by voluntary completion of a questionnaire, selection bias must be considered. Those issues aside, this is an important step toward analyzing the current methods for evaluation of gluten sensitivity.
With these current statistics, I hope progress and awareness will increase the number of patients appropriately evaluated for celiac disease—appropriate testing begins with antibody testing while on a gluten-containing diet. Symptom improvement on a gluten-free diet is considered, but does not eliminate the need, for antibody screening. Based on the antibody testing results, the need for genetic screening and intestinal biopsy will be evaluated.
Help Educate the Medical Community
There is still a lot of work to be done in the arena of educating practitioners on the appropriate diagnosis of both celiac disease and gluten intolerance. And please, do not attempt self-diagnosis.
Appropriately screening for celiac disease is easy. Ultimately it will be to your benefit.
Please help educate your physician, practitioner, and dietitian on the difference between celiac disease and gluten sensitivity. Print out the article ” The Difference Between Celiac Disease And Gluten Sensitivity” below and share it with your practitioner. Education is power, and we have the power to educate.