The Emotional Impact of Celiac Disease

If you’ve been recently diagnosed with celiac disease, do not underestimate the emotional impact of finding out that wheat and gluten are essentially poison to you. Many people, upon finding out they have celiac disease, are so relieved to have a diagnosis that doesn’t involve invasive procedures or serious misery as long as the appropriate diet is followed that they are unprepared for their later emotional responses to be celiac.

One of the many symptoms of celiac disease is crankiness and mood disorders, largely brought on by feeling sick from gluten and being malnourished due to the difficulties celiacs have in absorbing nutrients. Once gluten is eliminated from the diet, most celiacs report improvement in this condition. And while feeling better and happier is great, it can be a shock to discover you have a whole new personality. I know when I was diagnosed with celiac disease and my mood started to change after going on a gluten-free diet, I was shocked and confused. So much of my public identity was built up around being a surly misanthrope and suddenly, I was a calm bearer of good cheer. Who had I become?

Being diagnosed with celiac disease can also provoke feelings of isolation. Going shopping, especially in regular grocery stores (health food stores and specialty markets like Whole Foods and Trader Joes are much more celiac friendly) can be both frustrating and depressing. Eating out with celiac disease can seem intensely challenging, especially at first., and you friends and family may not be understanding about how severely even a small amount of gluten can effect a celiac’s health.

Celiac disease may also bring on feelings of sadness. I find that even as I adjust or find reasonable substitutes for more and more foods I can’t have because of celiac disease, I do sometimes still get very sad, especially when it’s a food that has sentimental meaning to me (for example a coconut bread I discovered in Australia and brought home a recipe for). No matter how used to celiac disease you become, be prepared for this response to jump out at you from time to time months and years down the road.

You may also be angry. Celiac disease is one of those things that seems to arbitrary and unfair, both because there’s nothing you could have done to prevent it, and because of how long you probably had to suffer from the affects of gluten before you were diagnosed with celiac. Believe me, it’s a common response. The best thing you can do is talk to other celiacs or work to educate others about celiac disease.

Celiac disease may also have an impact on your self image. I know I hate people perceiving me as a worrier or weak or fearful, but I have to overlook that and ask the questions I need to as a celiac to protect my health when eating out or shopping in a prepared foods store.

As frustrating as having celiac disease can be, it’s an excellent opportunity to improve your general eating habits, your cooking skills (almost all the foods you love can be made in a way that’s safe for celiacs, but you often have to do it yourself) and your assertiveness (for asking questions in restaurants). Allow yourself the slack you need to adjust to having celiac disease. It is a big deal, and a surprising one – anger, sadness and frustration are natural. But I assure you, happiness will be too, as you learn to manage your celiac disease you’ll feel better than you ever have in your life.

Reference:

• Celiac Support Center: www.celiac.com Celiac Disease Foundation: www.celiac.org Celiac Sprue Association: www.csaceliacs.org Center for Celiac Research: www.celiaccenter.org