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Understanding the Emotions: Applying the 5 Stages of Grief to Your Celiac Diagnosis

You have celiac disease and you can never eat gluten again.

The initial shock of diagnosis can stem from factors like:

  • You haven’t heard of celiac disease.
  • It’s frightening to learn you have an autoimmune disease.
  • You aren’t sure what “gluten” is or how it makes you sick.
  • You lack obvious outward symptoms.
  • The idea of eliminating foods you love is overwhelming.

Once your head stops spinning and you have time to ask your doctor some questions, you might wonder:

  • What will I eat?!
  • How can I feed my family the foods they are used to eating and keep myself healthy?
  • Will I ever dine out again?
  • Will everyone hate me for ruining the holidays?

Then, for many individuals, there is a rollercoaster ride of emotion that accompanies diagnosis.

It makes sense, too, because the foods we love are woven into the tapestry of our memories. Food is an important emotional marker. When certain foods are taken away, there is a sense of losing something that is a part of us.

Applying the stages of grief to the feelings some experience when they must give up gluten can be useful in overcoming and moving past that sense of loss. Note that not everyone experiences every stage, and the stages may not occur in order. Some stages can even be repeated. Everyone is unique, and so is their celiac diagnosis experience.

Understanding the 5 Stages of Loss and Grief as Applied to the Loss of Gluten

1 – Denial and isolation

Feelings:

 No one wants to accept a “flaw” in the system, so when we learn our body is not functioning properly and we must eliminate gluten, the tendency toward denial is high. This is especially true for individuals with “silent celiac,” celiac disease lacking obvious outward symptoms. If you feel fine, look fine, and see no overt issues in your health, how can it be possible that you are ill?

Along with denial may come a feeling of being alone, especially if you do not know others with celiac disease.

Solutions:

  • Allow yourself to feel your emotions. They are part of you. It is OK to feel the way you do.
  • Know you are not alone. Seek support of others with celiac disease via local and online celiac support groups.

2 – Anger

Feelings:

Forced change, like eliminating foods you love, can cause feelings of anger. You may wonder why this happened to you. Anger may flare up at meal times, when you have to figure out what you can eat. Also, it is not uncommon to feel anger at others who are able to eat the foods you can no longer enjoy.

Solutions:

  • Understand that anger is rooted in fear. A diagnosis of celiac disease can certainly lead to feelings of fear. That is unknown territory, and it is normal to fear the unknown.
  • Eliminate your fears and you can eliminate the anger. Determine what you are afraid of as related to your diagnosis and new gluten-free life. Are you afraid you won’t be able to socialize like before? Is it a fear for your health? Are you afraid you will have to exist on a boring, bland diet for the rest of your life while the rest of the world eats gluten with abandon? No matter the fear, acknowledge it.
  • Arm yourself with knowledge about celiac disease and gluten-free living. Seek fact-based resources both at your local support group and in online communities and websites.

Once you realize you will be able to socialize and that you don’t have to subsist on boring foods forever, and even that your health can be restored, you will feel more in control and your anger will lessen.

3 – Bargaining

Feelings:

 You may think, I’ll just have a little gluten, it won’t hurt me that much. Or maybe you say to yourself, “only when I’m out with friends”, or on holidays and special occasions it won’t be so bad to indulge a little.

Making a deal with yourself may seem completely legitimate, however, when you have celiac disease and eat gluten, you damage your health with every bite.

Bargaining to regain control over the situation will actually make your health more out of control.

Solutions:

  • With celiac disease, you must eliminate gluten 100% of the time, for life. Instead of bargaining with yourself to eat “a little” gluten occasionally, make a commitment to your health by learning how to make delicious, nourishing foods you love that are gluten-free. It’s not that difficult, and you may be surprised to find many of the foods you already enjoy are gluten-free.
  • Turn to those new support systems to learn which foods to eat, which to avoid and those you can replace with gluten-free versions. For example, all fresh fruits and vegetables, animal proteins (meat, fish, poultry, eggs), dairy products, seeds and nuts are naturally gluten-free (in their natural state with no gluten ingredients, like sauces, marinades, or thickeners added). That means a berry smoothie with fresh fruit and yogurt is perfectly acceptable on your new gluten-free diet. So is grilled chicken, roasted vegetables and a baked potato! There are so many tasty, naturally gluten-free foods, you may find you don’t need to bargain after all!

4 – Depression

Feelings:

 We cannot sugar-coat celiac disease and gluten-free living. The reality is that some individuals stop for a doughnut and coffee on the way to work each morning, have a burger for lunch and enjoy sushi with soy sauce for dinner. The need for a gluten-free diet throws off the entire routine. There is no morning bakery stop, no regular bun for that burger and soy sauce contains gluten, too.

Depending on your diet before diagnosis, it could feel like you hit a wall at every turn when you try to eat your “normal” diet. It can feel overwhelming and can cause you to feel depressed.

Solutions:

  • Do not give up! Even if the road is rocky at first, things will get better and you will discover foods you enjoy.
  • Seek replacement foods. For example, make or buy gluten-free muffins for breakfast, pick up some gluten-free bread for sandwiches and buy gluten-free soy sauce in small packets to take along when you dine out.

5 – Acceptance

Feelings:

This is the best part, and these are the best feelings. In time, you realize your gluten-free diet is not one of restriction, but instead one of liberation.

If you were ill before diagnosis of celiac disease, the gluten-free diet frees you from health issues, mystery illnesses and annoying symptoms that you didn’t understand before.

And even for those with “silent celiac” who lacked negative external symptoms or health issues, the damage that was occurring inside the body will subside in time once you adhere to a 100% gluten-free diet.

There is also the bonus of expanding your culinary skills and palate with new, exciting foods and a new support network that allows you to receive (and give) continued support as you live your gluten-free life!

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Gigi Stewart

Blogger at GlutenFreeGigi
As someone with celiac disease and multiple food allergies, Gigi understands how food can harm or heal. Fully restoring her own health with diet alone after a 25-year health struggle, Gigi now uses her own experiences and the skills she gained as a former neuroscience researcher to share practical, easy-to-understand strategies, science-backed nutrition information, immediately useful tips and recipes to make gluten-free living liberating and positive for everyone!
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