Do you remember the moment you first heard the words, “You have celiac disease?” Maybe it was a relief—the years of unexplained symptoms and feeling miserable finally had a name.
Maybe it was a shock and felt like someone dropped a load of bricks on you. Or maybe you greeted the news with denial and the certainty the diagnosis couldn’t possibly be right.
If it was your child who was diagnosed, you might have had a whole different set of feelings, including guilt, worry and grief.
A diagnosis of a chronic illness such as celiac disease or gluten sensitivity stirs up many emotions that are likely to change and evolve over time. Giving yourself permission to experience whatever feelings you have, positive or negative, is important in learning to cope with the challenges that the gluten-free diet presents daily.
The most significant effects are likely to be on social interactions with friends, relatives or co-workers whenever food is involved. A 2012 study by Anne Lee, Ed.D., a registered dietitian and director of nutritional services for Schär USA, found that 46 percent of respondents felt that the gluten-free diet limited their social lives, 55 percent found the gluten-free diet to be embarrassing, and 33 percent reported that their family and friends did not understand their need to follow the diet.
These difficulties affect more than just emotional wellbeing; they may even affect your ability to stay on the diet. A study from the Canadian Celiac Association found that nearly 19 percent of respondents reported intentionally consuming gluten once or twice during the past year. Of that group, 13 percent reported eating foods with gluten at least once a month.
The health effects of cheating on the gluten-free diet if you have celiac disease are clear, so why would someone intentionally eat something they know is harmful to them? The answer may lie in how we cope with celiac disease and the gluten-free diet.
Research shows that those on the gluten-free diet have many common emotional experiences. The diet can cause a feeling of isolation or exclusion such as not being able to eat at certain restaurants, at family gatherings or at work.
The fear of being “glutened,” or coming into unintentional contact with gluten, can also contribute to this isolation. Reviewing your diet restrictions every time with restaurant staff and worrying about whether or not the meal is safe can be exhausting. Before the gluten-free diet, it may have been a pleasure to be invited out for dinner or to a lunch with co-workers. Now it’s likely a source of worry.
Depending on your personality, you may be uncomfortable or embarrassed by the extra attention or visibility the gluten-free diet creates. One study showed that men purposefully ate gluten-containing food instead of telling their co-workers about their gluten-free diet. This embarrassment can be particularly strong for teenagers, who may feel ostracized by their peers because of the diet.
Conversely some may find that the gluten-free diet causes them to be neglected or forgotten by family, friends and co-workers. Family may not be helpful in providing safe foods. Co-workers may choose restaurants without considering if there is a gluten-free menu.
Everyone with celiac disease or gluten sensitivity feels this way at one time or another. What’s important is how you deal with these feelings. Finding people who are experiencing the same loss as you can be helpful. However it’s important to try to avoid those who are “stuck” in this grief.
Diagnosis and denial
Denial is an important emotion with any diagnosis, and it may be immediate or develop over the long term.
Danna Korn, author of Living Gluten Free for Dummies, 2nd Edition and founder of the support group Raising Our Celiac Kids (R.O.C.K), says those who haven’t been properly tested for celiac disease experience the strongest denial.
“Denial can be a justification for some people to think, ‘I can just eat a little bit,’” she says. “If they haven’t been properly tested, it can be very difficult to see the importance of being totally gluten free.”
But even if you or your child has a clear diagnosis, you can still be in denial. “I don’t have diarrhea, so it can’t be celiac disease. I’m overweight so I can’t be having issues absorbing food,” you might think.
Denial may reveal itself a few weeks or months into the diet as the reality sets in. Teenagers who have had celiac disease since they were young children may go through their own denial. “I don’t want to be different from my friends, so I will eat gluten and deal with feeling bad later,” they might reason.
Dealing with denial may be as simple as talking to someone else who is going through what you are or writing down the ways your life has improved on the gluten-free diet.
For teenagers Korn suggests parents be honest about how cheating will affect them. “If your teen plays sports, talk about how feeling sick or tired will affect the ability to play well in the next game,” she says. “Even outwardly asymptomatic teens have some symptoms [such as] fatigue, depression or anxiety.” However Korn suggests that if your teenager threatens to cheat on the gluten-free diet, it isn’t helpful if the parents react too strongly. “The more you freak out, the more they will rebel,” she explains.
Changing your thinking
Being diagnosed with celiac disease as an adult comes with its own set of challenges, but there are ways to cope. Debbie Chandler, of Bellefontaine, Ohio, was diagnosed 12 years ago. “When I was diagnosed, I said to myself that I’ve eaten all the gluten I’ve needed in my life,” she says. “I’ve had pizza and pasta and enjoyed those. Now I can find new things to enjoy.”
For Chandler socializing continues to be difficult at times, even after more than a decade, but she’s figured ways to work around it. “Instead of having our friends try to accommodate my diet at their homes, we go out to eat [at safe restaurants] with them instead,” she says.
Her family gatherings were affected almost immediately after her diagnosis. “The first few holidays were weird,” she recalls. “The first Christmas after I was diagnosed, my family catered in Italian food!”
Chandler chose to deal with it in a positive way by preparing gluten-free versions of items on the menu for herself.
Meanwhile the widespread availability of gluten-free foods in recent years has helped her feel less deprived. “There are more options, and they are more affordable every day. But I’ve also grown to like new tastes, like lettuce wraps instead of buns,” she says.
Korn agrees. “It is so much easier today than it was 24 years ago when I started into this with my kids,” she says.
Both focus on what they can have on the gluten-free diet instead of what they have given up, an attitude that’s important in coping with celiac disease and gluten sensitivity.
Korn encourages those on the gluten-free diet to remain as positive as possible. “I don’t even like the word ‘cope,’” she says, “because ‘coping’ implies that being gluten-free is a ‘bad’ thing that you have to ‘cope’ with whereas I believe it’s a great thing. The gluten-free diet can be the healthiest diet in the world.”
Educate and empower your child
When a child is diagnosed with celiac disease or gluten sensitivity, both he or she and the parents have to learn to accommodate changes the gluten-free diet requires.
Parents often struggle with guilt, fear and uncertainty about how the whole family will adjust. “A diagnosis of celiac disease in a child is often much harder on the parent than it is on the child,” says Korn, whose son has celiac disease. While it can be hard to not let your child see that guilt and sadness, she cautions parents, “Remember your kids have ears. They hear your negativity.”
Parents may even find themselves apologizing to teachers or other parents about accommodating their child’s dietary needs, communicating to a child that the gluten-free diet is something they have to be sorry about. “Don’t say, ‘I’m sorry.’ Say that we’re going to get through this,” Korn advises.
Even small children benefit from a proactive approach and should be given as much control of their diet as possible from day one.
Read labels together, even when your children are small. Korn showed food labels to her son even before he could really read. “By the time he was in elementary school, he felt comfortable saying no to things he couldn’t eat,” she says “Educate your child. Empower your child.”
Even adults diagnosed with celiac disease find it can affect the relationship with their parents. “No one knew quite what to do with me when I was diagnosed,” Chandler says. “My parents felt terribly guilty.”
She takes a hands-on approach now, helping her mother shop for food for family events and helping to prepare the meal. “I might even suggest disposable cookware just to make sure things are clean,” Chandler says.
Your partnership with your medical team can also be important in the coping process.
Accurate information about celiac disease or gluten sensitivity and the gluten-free diet will empower you to move forward. Look for a doctor who encourages questions, and make sure you are prepared with a list when you go to appointments. A good physician will answer questions in a way that you can understand.
For accurate gluten-free diet information, find a dietitian experienced in counseling those with celiac disease. The Academy of Nutrition and Dietetics has an easy-to-use search engine for dietitians that can be found at eatright.org.
Today there’s a wealth of information available online, but always seek out reliable sources, including Gluten-Free Living. You’ll also find a list of reputable support groups, celiac disease centers and more on our website.
Your personality might dictate how helpful an abundance of information from online sources really is. For some, gathering lots of information feels empowering. But for others too much information can increase anxiety and lead to preoccupation with symptoms and issues that may never actually occur.
“At first I was online getting my information, and I was OK with it,” Chandler says, but now she relies on her local support group and dietitian.
A support group, whether in your local community or online, can help you cope, too. Chandler’s husband encouraged her to go to a support group meeting even though she was reluctant at first. “Now I’m so glad I go and can enjoy learning new things and not feeling alone,” she says.
If you choose online support, keep in mind that Internet groups are not necessarily moderated by a physician or dietitian, and misinformation and fear can spread quickly. “Be as diligent as you possibly can in gathering information, but don’t let it cause you to feel like you’re living in a bubble,” Korn says.
Rebuilding and acceptance
Since celiac disease and gluten sensitivity are chronic conditions with no cure, your acceptance of your diagnosis and the gluten-free diet are critical to long-term good health and emotional wellbeing.
How accepting you feel may not always be the same, and your attitude is likely to shift and change. But you will be more successful following the gluten-free diet if you control it instead of letting it control you, Korn advises.
Put another way, live with celiac disease or gluten sensitivity, not for it.
This story first ran in Gluten-Free Living in December 2014.