By Amy Ratner, Beyond Celiac Science and Medical News Analyst

Thoughts turn to love and relationships on Valentine’s Day, so we’re looking at the complicated connection you can have with the gluten-free diet when you have celiac disease.

First, you need the diet, you depend on the diet, you very likely trust the safety of the diet. It’s your best friend and supports you in a return to good health, taking away pain, fatigue, nutritional deficiencies and more. But it’s a demanding partner as well. You have to constantly tend to it and meet its needs. The diet can hold you back socially. It may even bring a new kind of depression because you often feel different and isolated from the joy of sharing food and the events that revolve around it.

When you first got into the relationship, you probably expected it to be perfect. You might even have been told by your doctor or your dietitian that it was everything you needed. It was well-intentioned advice, especially 5 or 10 years ago, when we understood less about celiac disease.

But as a community we’ve grown up a bit, been around the block, had our hearts broken. We know more about the impact that the gluten-free diet has on celiac disease because of an ever-growing body of research. In fact, the evidence is clear: the gluten-free diet alone often does not meet all our needs.

The diet has challenges and limitations, though our love can be blind, and we accept some things as normal that really aren’t. The emotional toll of the diligence required by the diet needs to be addressed. Follow-up care and disease management need to be improved. Patients have to speak up and doctors and researchers have to listen — communication is key – to solve the different hardships that accompany a disease that affects people of all ages and backgrounds. We need better protection from some of the silent damage and associated conditions caused by celiac disease that the diet cannot handle.

And new treatments that remove or minimize some of the burdens of the diet, especially when you eat out and travel, would make life go more smoothly and be more joyful.

Most of us want a healthy relationship with the gluten-free diet and recognize its good qualities, but some see it as strictly negative and detrimental to their quality of life. In a 2014 study, 25 percent of participants said they regretted being diagnosed with celiac disease.

“In other words, the gluten-free diet is burdensome enough that a quarter of patients would rather have kept symptoms to not have to deal with the gluten-free diet,” the study said.

So, Valentine’s Day seems like a good time to do a status update on the relationship between the gluten-free diet and celiac disease. We’ve asked a few experts to weigh in on how the understanding of the essential connection between the two is evolving. And though we’ve been a bit playful in this exploration, the physicians and dietitians we talked to had serious points to raise about the gluten-free diet and your healthy life with celiac disease.

Here’s what they had to say.

“The gluten-free diet can be life-saving, but for many patients it is a deeply unsatisfying treatment. Unlike most conditions that are treatable with a pill, celiac disease requires a total reorientation of one’s daily routines, given the efforts required to avoid gluten. So many patients report being “worn down” by celiac disease, and the constant vigilance required of this diet is a burden that can weigh heavily upon the individual and family.”

Benjamin Lebwohl, MD, MS
Assistant Professor of Clinical Medicine and Epidemiology
Columbia University

“On one hand, having the gluten-free diet as the only treatment for celiac disease is wonderful. It is a prescription for a healthy, balanced diet. However, putting it in practice often falls short nutritionally. The need for close monitoring of the diet, especially in social situations, is burdensome. I think the biggest deficit is that current research shows the diet has shortfalls as a treatment for celiac disease. Specifically, the need to follow it for life has a negative impact on a person’s quality of life. Additionally, unless you take care to select naturally gluten-free foods including gluten-free whole grains instead of processed foods, the diet can be deficient in nutrients.”

Anne Roland Lee, EdD, RDN, LD
Nutritionist
Celiac Disease Center at Columbia University

“One of the first things you realize when you start spending a lot of time with celiac disease is that the gluten free diet is not a cure. It works really well for some patients, really poorly for others. For the majority, it is helpful and much better than nothing, but it comes with a lot of issues.

For every other disease, we accept that a single therapy is not going to result in optimal outcomes for all patients. It is time we progress away from a one-size-fits-all solution for a very heterogeneous celiac disease population and work towards improving quality of life for individuals and health outcomes for the overall population.”

Daniel Leffler, MD, MS
Medical Director, Clinical Science
Gastroenterology TAU
Takeda Pharmaceuticals USA, Inc.

“The gluten-free diet has saved the lives of countless children and adults with celiac disease. However, it is far from a perfect treatment. It can be burdensome to follow and is not always effective. At least 10 percent of those with celiac disease who follow a gluten-free diet have ongoing or recurrent celiac disease-related symptoms or signs. Some, such as the elderly, those who are illiterate or those with impaired intellectual abilities cannot follow the diet unaided. For these reasons, many celiac disease patients — 42 percent in one study — consider the gluten-free diet to be a poor or very poor treatment. Non-dietary treatments to augment the gluten-free diet are sorely needed. The path to identifying, developing and testing such treatments is relatively straightforward because of our understanding of many of the essential factors and events that lead to gluten reactions in celiac disease.”

Ciaran P. Kelly MD
Director
Celiac Center and Gastroenterology Fellowship Training
Beth Israel Deaconess Medical Center
Professor of Medicine
Harvard Medical School
Beyond Celiac Board of Directors

“There is a problem with lack of follow-up that is not the patient’s fault because often the doctors say, “Follow the gluten-free diet and I’ll see you again in 10 years for a colonoscopy,” (as they move onto health concerns other than celiac disease). Then symptoms get better, but you have no idea what is going on in the gut. In the last four years at the Center for Celiac Research and Treatment, we have implemented a follow-up endoscopy after the first year on the diet. The diet is effective, but it is difficult to manage and maintain. And it does not work for a fraction of people who have an over-active immune system and are prescribed an extremely strict diet for several months to reset the immune system. Especially for those patients, it would be great to have a medication instead. And for most patients there is definitely a role for a medication when eating out, for children’s birthday parties and other social and religious occasions.”

Pamela A Cureton, RD LDN
Dietitian
Center for Celiac Research & Treatment
MassGeneral Hospital for Children