Do others understand Celiac Grief?

by | G+ Amy Leger

I remember when Emma was first diagnosed with celiac disease back in 2000, I was happy we found out what was making our daughter so very sick, and she was on the mend. But there is another significant part of me that felt grief. And to this day, for a brief time, I will be sad for her and yes, for me.

Why do we grieve?

We grieve because the diagnosis the family has “lost” something. In Danna Korn’s book Kids with Celiac Disease she says after a child’s initial diagnosis, people tend “…to progress through a series of emotions in response to bad news or loss. If you think about it, having your child diagnosed with celiac disease is a loss of a kind. Perhaps it is the loss of the image you may have had for your child’s future.”

Korn recommends you “recognize your grief and allow yourself a grieving period….however it is also important not to dwell on it.” And as in my case Korn says, “Grief is one of the emotions that may rear its ugly head every couple of years and must be addressed again each time.”

And it doesn’t just affect parents of celiac kids. Nancy Ehrlich Lapid is a writer for’s guide to celiac disease. In her bio she recalls the moments after her diagnosis at 41 years old.

“I was thinking, ‘My life is over. How can I go on dates if I can’t even have a bagel or a pastry or a slice of pizza? How can I travel and go on business dinners? How can I explain all this to my friends? Will anyone ever want to eat with me again? Will I ever get invited to another dinner party?’ I was sad and overwhelmed.”

Combating Celiac-Related Grief

The support group I belong to was instrumental in getting me out of my funk. The information sharing was the best thing to get me to come around and feel like I was in control of the gluten-free diet for my 18-month-old child. I talked about this in a support group post last fall.  Once I started getting the hang of the diet, I got more involved volunteering for celiac-related events and fundraisers which helped me because I felt like I was doing something about it.

Lapid also described how she handled her grief. “With a lot of research and a little creativity, I learned how to do it all while staying safely gluten-free.” And now she’s educating thousands through her online articles.

Do Others Really Understand Your Journey?

Some may, but I have found many don’t. It happens everywhere, school, activities, even when you go to relatives’ homes; they may know about the gluten-free “thing” but don’t know what to do next. I have found it is best to treat it as a window of opportunity to explain to people more about the gluten-free lifestyle.

In all honesty, there will be people who won’t have the time or willingness to understand the changes that have come to your life with a celiac diagnosis; which can be frustrating, especially since some of these people may be close relatives. But you can’t force them to have an interest. Demanding or expecting more from them (reading a book or doing some research on the internet) could cause even more angst and sadness for you; even launch you into self-pity and grieving all over again. I think you can only hope they’ll come around some day, when they finally understand the gluten-free lifestyle isn’t going away.

Moving On

So as the saying goes, “pull your bootstraps up” and get going. The health of you and your family is of utmost importance. So be emotional, cry a little, but you also must move on and be productive. It will help you and the celiac in your family to find a sense of normalcy and a rhythm to life.

Some of the quotes in this post are from Kids with Celiac Disease, by Danna Korn. If you have a new diagnosis in your family, it is a fantastic book and a quick read that gets to the heart of the issues related to celiac disease.

3 Responses to “Do others understand Celiac Grief?”

  1. It has been 2 years since I have been diagnosed. Others don’t seem to understand that sometimes being around the food I can’t eat (especially the smell) can be hard. I guess that is because I have to learn to cook more things and make the things that I miss. I am normally positive about Celiac Disease, except when I am stressed or exhausted and wish I could have some food delivered! We are fortunate that there is now so much info on the web about good safe foods!

  2. I forgot to include a link to my blog in my comment.


  1. Wheat Free Food | Gluten Free Store

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