Taming Temptation: Strategies for Maintaining A 100% Gluten-Free Diet

07/29/2022 - The term “cheating” is judgmental and for most celiacs, probably inaccurate. It will not be discussed here. It is unfair to accuse a person with celiac disease of cheating— when they had to learn the diet on their own because their doctor or dietitian knew little about it.

Temptation, however, is neutral territory.

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We are all tempted in some way by something. Whether or not we choose to act on temptation is something that occurs after the feeling of being tempted. Handle one and you’ve got the other taken care of. How we avoid temptation depends a lot on how we’ve addressed similar issues before; there’s no one size fits all solution. Taming temptation is a concern that must be addressed without judgment so that we may help others and receive help without guilt or shame.

It’s important to realize that when considering important issues like finding ways to stick with a medically-prescribed diet for long term health, it is possible to learn a lot from others who find themselves in similar circumstances, whether they have celiac disease or not.

The University of Chicago Celiac Disease Program developed the Taming Temptation Education Tour to highlight the fact that it is not enough to tell a newly diagnosed celiac what is or is not gluten-free. We want to emphasize the importance of teaching the skills that are necessary for an individual to choose to be gluten-free every day of his or her life. Skills for handling temptation are the focus of this education initiative.

What We Know

Roughly one-third of the U.S. population—that’s 90 million Americans—have a chronic illness. This includes 10-15% of young people who have one or more chronic conditions. It is estimated that only 50% of Americans adhere to the treatment regimen for their chronic condition. Many say that it is easier to take a medication than to engage in health behaviors (like diet or exercise) to manage their condition.

While research estimates vary, it is clear that on average, over half of those diagnosed with celiac disease do not strictly follow the gluten-free diet. Research has demonstrated that those with celiac disease who do not follow the gluten-free diet at all, or just part of the time, tend to die earlier than their siblings. Yet in this same study, those who followed a completely gluten-free diet lived longer than their siblings.

It has also been established that children diagnosed with celiac disease tend to avoid many of the serious complications of this condition, while adults who remain undiagnosed for years are much more likely to experience severe complications such as refractory sprue, autoimmune disorders, osteoporosis and infertility. While many factors may influence whether a person with celiac disease also experiences complications, it is clear that adherence to the gluten-free diet, once diagnosed, is a big part of the picture.

Education Isn’t Enough

If a person diagnosed with celiac disease is fortunate enough to receive a referral to a knowledgeable and experienced dietitian, the new celiac will start off his or her gluten-free life ahead of many others who receive little information or guidance. However, numerous studies in celiac disease and other chronic conditions demonstrate that education isn’t enough to help people follow their medically-prescribed diet.

It’s interesting to note that two countries that are commonly regarded as having high-quality care for people with celiac disease are still faced with the challenge of helping celiacs improve their compliance to the diet.

A 2002 Italian study of 390 celiacs receiving follow up biopsies after an average of seven years on a gluten-free diet found that 44% had normal biopsies and 56% had mild or severe intestinal damage. In 2001, a Canadian study of 234 celiacs demonstrated that 35% had gastrointestinal symptoms consistent with celiac disease two or more times a week and about the same number reported difficulty with the diet. Interestingly, over 50% rated their dietitians as very knowledgeable.

You Are What You Believe

So if knowledge isn’t the key, what is? As it turns out, this very question has been studied in a number of patient groups, from people on dialysis because their kidneys are failing, to people with diabetes who need to lose weight. Consistently, researchers have found a very strong influence on the ability of patients to adopt health behaviors that treat or manage their condition: Their beliefs about their own health.

Health beliefs include whether or not someone feels that their condition is severe, or that their risk for a condition is serious; whether or not an individual feels that there are alternative behaviors that can manage their condition (the belief that what the doctor has recommended is in fact what they should do); and whether or not a person feels that they can overcome barriers and successfully manage their condition on their own. These kinds of beliefs can change over time, as we learn through our interactions with others and our environment.

Researchers that have studied health beliefs have found that what an individual believes about their health affects the actions they take to maintain their health.

Super Size Me

Super Size Me is an award-winning documentary film about a man who ate at McDonald’s, three meals a day for thirty days. Before embarking on the film (he was also the filmmaker) he brought together a team of doctors to monitor his health. He decided he would vary his menu choices during the thirty days, so he didn’t have the worst items on the menu at every meal.

What do you think happened? The young man, in his 30’s, experienced a 50 point increase in his cholesterol levels, gained a lot of weight, and at one point his liver began to fail. His doctors insisted that he not complete the thirty days of the film, and when the filmmaker refused to stop, his physicians provided him with a detailed list of symptoms that would require an immediate trip to the emergency room.

Does this surprise you?

Traveling around the country to celiac conferences and support groups, I have related the story of this young filmmaker and have yet to find anyone who was truly surprised that his cholesterol skyrocketed, that he gained weight or even that he became seriously ill.

What do we believe about our health and the effects that our choices have on our health?

The fact that a vast majority of our society chooses not to eat at McDonald’s three times a day is an indication of a widespread belief that this behavior is harmful. Most of us would say that it is not necessary to read studies in a medical journal about this issue in order to know we should not eat every day at McDonald’s. Isn’t it interesting that despite the fact most of us don’t “feel” cholesterol doing damage to our arteries (only those with late stage cardiac disease might), we believe that high fat foods are tremendously harmful and make food choices accordingly?

What makes celiac disease different?

While heart disease kills more people annually than celiac disease, it is not uncommon for patients to question the results of the blood tests, or the need for the biopsy. Given a diagnosis, some question the biopsy results when they see the pathologist hasn’t written “patient has celiac disease” and are not appeased when they are told the pathologist’s job isn’t to conclude what the patient has, only to report what is seen in the tissue specimen.

Some parents with celiac disease do not have their children tested; some adults who are related to a celiac choose not to be tested. Some celiacs without symptoms are convinced that they have a “less serious” form of the disease, and some who have been on the diet for a long time and accidentally have gluten are convinced they have been cured. Other celiacs who know they should be on a 100% gluten-free diet ask: “I only have two pieces of wheat toast in the morning, is that really so bad?”

While it is clear that education plays an important part in addressing these issues, we all know that this resistance lives in the hearts of very educated people. It’s normal and it’s natural, however this resistance is founded in beliefs that reinforce harmful behaviors.

Health Beliefs of Adult Celiacs

So what exactly do celiacs believe? We conducted a pilot survey with 100 people attending a support group meeting in Western New York State, and are grateful to the members of this group for participating in our survey. Participants ranged from the recently diagnosed to 20 years post-diagnosis.

Predominant health beliefs: 51% agreed with the statement “If I eat less gluten I will have less intestinal damage.” 36% agreed that “My doctor should be the one to tell me when I need follow up testing.” 33% agreed that “I’ve lived this long eating gluten, how much will the diet help me now?” 16% expressed the belief that scientists/doctors still haven’t proven that gluten really hurts them.

This survey provided brief, yet valuable insight into the concerns of people with celiac disease, enabling us to know the kinds of issues that need to be further addressed. We will be conducting a national survey later this year and hope for additional participation.

Health Beliefs about Diabetes and Weight Loss

In a study on diabetes and weight loss, 154 of the participants were at risk for diabetes. Those who perceived themselves to be at highest risk were right—and were most often women. High risk patients did not believe that weight loss would lower their risk. High risk patients were most successful at intensive weight loss programs but were also the most likely to relapse after one year.

Despite the fact that the women knew they were at high risk, and despite their success in the weight loss program, their belief that weight loss would not lower their risk for diabetes contributed to their high relapse rate.

Kidney Failure: What Can We Learn from Patients on Dialysis?

People with kidney disease require a complex diet which eliminates potassium, phosphorus, sodium and sharply decreases intake of fluids. This diet is extremely effective in reducing medical complications (including severe pain and inability to breathe) and improves life expectancy.

Several studies in this patient population found that the extent of symptoms was not related to compliance, and a belief that complications would happen to someone else (called an “optimistic bias”) played a very strong role in patients choosing not to follow this diet. Further, researchers found that combining education with an individual’s readiness to change is important.

Blueprints for Behavior Change

Research behind smoking cessation programs is extensive and has shown that quitters with and without help are equally as successful— reinforcing the notion that there is no one solution that will work for everyone. However it is well established that deep and lasting behavior change must be internally motivated—guilt, fear, shame and pressure from others is not effective.

• Programs that help people quit smoking have found that a person’s stage of readiness is most important:
• Precontemplation: not considering change
• Contemplation: considering change
• Preparation: preparing for change (listing steps to take to implement change)
• Action: implementing change
• Maintenance: anticipating and handling temptations and learning from slips how to maintain change

An individual who eats gluten and knows that it is probably not good for them and that they should make a change is in the contemplation stage. Does this individual need more information to realize that they should move to the next level and prepare to make the change? Perhaps follow up testing would give this person the additional information that they need to take the steps necessary to improve their health. If the follow up test results show that they have been eating gluten, perhaps it might be the motivation they need to review their diet and eliminate all gluten.

Factors that Improve Success

• Factors that will improve success for a person who desires to improve their diet include:
• Knowledge of diet and success with diet
• Understanding risk of complications (Consequences of behavior)
• Ability to develop routines/develop methods to follow diet
• Trust in physician/ dietitian involved in care
• Ability to recognize and take steps to manage feelings
• Possessing positive coping skills

Checklist for Success

Every challenge we face in life prepares us for the next challenge coming our way. How you face difficult circumstances and the ways you get through them will help you decide what works best for you in this situation. Here are some helpful suggestions:

• Get the facts—regular follow-up tests and a diet check-up when necessary.
• Plan to be determined, not deprived! It’s more than the food you bring to the party— it’s preparing yourself for the circumstances that will tempt you anyway.
• Write a reminder card and carry it with you—at times when you are tempted, remind yourself why you need to stick to your diet.
• Stay current with the latest information on celiac disease—incorporate new knowledge into your diet and join a support group.
• Find medical professionals you can work with, even if you need to help educate them.
• Understand and learn to recognize the feelings that drive your urge to eat the foods you shouldn’t, and develop alternate strategies.
• Assertive communication: What will you say when someone makes you feel bad?
• Replace food as a reward— or purchase the nicest gluten-free treat you can find.
• Know that the urge will pass! Keep busy for the next 20 minutes—and it will!
• Eating is an automatic behavior—break the cycle so you can think about your choices.

A Word about Feelings

In many circumstances feelings drive behavior. If you can address how you feel at any given time, you are more likely to be able to avoid temptation. If you were ever in a situation where you decided to eat gluten, ask yourself why the temptation might have occurred. Perhaps it happened due to one of these common causes:

• Need to compensate for something you can’t have, or the need for a reward
• Feeling deprived
• Stress
• Pressure in a social situation
• Destiny – “It’s impossible to follow this diet, no one can do it.” How did you feel at the time? Angry? Depressed? Lonely? Sad? Afraid?

An Example: Destiny

REASON: The diet is so hard, it’s just about impossible. Why should I even try? FEELING: Denial (or unbearable anxiety) WHAT TO DO #1: Information!

Follow up testing will highlight consequences of not following diet, and may put unbearable anxiety (fear of unknown) into a realistic context. WHAT TO DO #2: Methods to follow diet/seeking assistance from knowledgeable dietitian and support of local celiac group.

The Key is Follow-Up Testing

While every person with celiac disease may struggle with temptation, most do so without the benefit of follow-up testing. It is not entirely possible to know how well or how poorly one is doing on the diet without regular feedback in the form of follow-up testing.

It’s never too late to start follow-up testing. The University of Chicago Celiac Disease Program recommends follow up testing at six months post-diagnosis, at one year post-diagnosis and then every year or so after that. While some physicians prefer to use the tissue transglutaminase (tTG) test for follow up, we find this test to be inaccurate in the follow up setting, often reverting to negative too soon, and not responding to the presence of gluten in the diet until a higher threshold is reached. In addition, the tTG test may be positive in people with Type 1 diabetes who are doing well on the diet (false positive).

We recommend antigliadin IgG and antigliadin IgA antibodies for follow up testing for two reasons. First, they are more sensitive to changes in the diet, often picking up small amounts of gluten. Second, the rise and fall of antigliadin antibodies tends to more closely reflect healing in the intestine.

It is important to note that receiving a “negative” test result for these tests isn’t enough information to know how well you’re doing—its important to have a numerical value for the tests, and they should be as close to zero as possible (Definitely under 10).

Your test results will tell you if your food choices have been good—ones that promote your long term health—or if they need improvement. Either way you will know where you stand, and that you have the power to do something about it.