Jump to content
  • Sign Up
  • entries
  • comments
  • views

A Mother’s Reflections of Raising a Child with Celiac Disease

Amy Leger


Yes, it would have been more appropriate to celebrate Mother’s Day with this post, but ironically (or is it coincidentally) the job of being a mom has really prevented me from preparing this post before now.

On this Mother’s Day, I found myself thinking back to all those times during Emma’s illness, subsequent celiac diagnosis and eventual permanent lifestyle change where the Mom really came out in me, both quietly and ferociously.

Here’s my list starting with before diagnosis and goes chronologically from there - maybe you can relate:

I remember...
  1. Before diagnosis, wondering why my daughter, celebrating her first birthday, refused to eat cake and threw a tantrum.
  2. Looking at my 1-year-old daughter with skinny legs, bloated tummy, and crabby disposition and wondering - is this the way the next 17 years will be.
  3. Questioning doctors about why my daughter throws up so much and has such a big belly - I was treated like I was an overprotective mom who knew nothing.
  4. Cleaning up vomit on the carpet, on clothes, in the kitchen, in bed, on the wall, on stuffed animals, etc.
  5. Leaving work early and in tears because something was wrong with my daughter and no one knew what it was.
  6. Feeling the best relief ever when a gastroenterologist confirmed our doctor’s eventual diagnosis of celiac disase - just by looking at her. Solidifying the fact that we weren’t crazy!
  7. Getting up at 4:30 a.m. to fix 16-month-old Emma breakfast at the latest acceptable moment because she couldn’t eat for 8 hours before her endoscopy and biopsy.
  8. My eyes welling up in tears as the anesthesiologist put the mask on my daughter to put her “under” for the biopsy. She was fighting and crying and then her whole body went limp.
  9. Panicking at our local grocery store, as I looked for gluten-free food for the first time. I only came home with eggs, Cheetos and Corn Pops (which now are no longer gluten-free).
  10. Being so happy that my husband had gotten me a bread maker for Christmas the year before; a gift my male co-workers thought was so dumb, ended up being such a blessing so I could make gluten-free bread.
  11. Feeling the joy after only 7 days on the gluten-free diet, Emma was a completely different child. Happy and no longer sickly.
  12. Being frustrated because I had to convince many friends and family that celiac is a lifetime disease and her diet had to be taken seriously.
  13. Grieving the loss of “normalcy”.
  14. Being relieved after finding other parents who had recently started a celiac support group. We all came together and eventually started planning our annual fundraiser: Making Tracks for Celiacs.
Fast forward to 4 years later….
  1. Being nervous about sending Emma to Kindergarten, but pleased we found one hot lunch she could take: Tacos!
  2. Celebrating victory when she ate tacos for the first time at school and they were “awesome!”
  3. Feeling bad when I had to tell her that tacos were no longer available on the menu.
  4. Making 3+ years of daily cold lunches for school.
  5. Feeling victorious when our school found gluten-free food options for Emma, which led to a gluten-free menu!
  6. Feeling strong enough as a mom of a celiac child, that we took in Ida, an exchange student with celiac; I started this blog; and I am teaching an occasional gluten-free class.
If you’re reading this as a mom of a child newly diagnosed with celiac, you may be able to relate to just a few things in this post — but that will likely change. As time goes on, the overwhelming shock of the diagnosis and diet will subside. With education and support you will feel stronger, more confident and ready to not only ensure your son or daughter is getting the right foods, but that you’re empowering them with the same tools to manage this gluten-free lifestyle on their own.

Now that’s a great mom! Happy Mother’s Day!


Recommended Comments

Guest Gracie Bost


I read your article and found it very helpful. My granddaughter was diagnosed last week. She is 2 1/2. I have been thinking a lot about school lunches since I was a k5 teacher and know all about what kind of hardships that can bring. She had 2 birthday parties to go to today and my daughter was making her her 1st gluten free cake (wacky cake). I don't know how that turned out. My daughter is very very proactive and is taking this on as a great challenge. She is a self proclaimed nutritionist and has taught classes on it.

Back to my grandbaby. She is totally not herself. She is on her moms hip 24/7.

Now, her Dr. looked at her and then to me and said 'Get tested. You probably both have it. I have had lifelong tummy issues.

Here's to looking forward. It is something treatable we know and very glad it is celiac instead of anything else.

Thanks again for your article.

Share this comment

Link to comment
Guest Tina from Colorado


I have been on the computer trying to research how to start a ROCK support group in Colorado Springs, Colorado. I came upon your post and identified with it in so many ways that I cried. My daughter is almost 7 years old and although so much better I am grieving today that Grandma gave her the sausage and cheese off of a pizza last night while I was at work and today she was a crabby zombie-just total not the fun-loving child she can be. I need help!!! I'm tired of people not taking this disease seriously!! I am reading Elizabeth Hasselbeck's new gluten-free diet book and it is giving me some empowerment to do more. But, like she said the drug companies do not benefit from this disease so there is little research and Doctor's who diagnose it. Any advice for me?

Thanks for listening!!!

Share this comment

Link to comment

Tina, I realize your post was last year, so you may not even receive my response. My 14 year old daughter was just diagnosed last week, after 5 years of the onset of her symptoms.

Share this comment

Link to comment
Guest Tina


Our 11 year old son has just been diagnosed with celiac disease. I just need to talk to other moms who have "been there". The gastrointestinal doctor said there was someone to talk to but they moved to another state. I am thinking, "really, just one other person to talk to? I thought 3 million people had this disease?" I am in a state of confusion, anger and helplessness right now. Thanks for any help.

Share this comment

Link to comment

It all sounds so poetic, but to me it is just completely overwhelming. My 11 year old and six months later my 13 year old, both diagnosed with type 1 diabetes, and now celiac disease. It feels impossible. People are telling me "it's not that big of a deal", and maybe it isn't to some people, but if it isn't, why do I feel like it is?

Share this comment

Link to comment

Just read your article and I could relate to every single word you wrote (minus having an exchange student). My 7 year old was diagnosed with lactose intolerance last week, so I feel like I'm starting all over again and very overwhelmed. It feels nice to read your blog and not feel alone. I'm still searching for a local support group. Thank you or sharing.

Share this comment

Link to comment

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Forum Statistics

    • Total Topics
    • Total Posts
  • Blog Statistics

    • Total Blogs
    • Total Entries
  • Topics

  • Blog Comments

    • Ennis_Tx, I was braking teeth in my 20's too! Be sure to share this link with your dentist they will never believe you it is not poor oral hygeine on your part. http://www.jcda.ca/article/b39/ Ennis_Tx look into trialing some K2 dots. Vitamin D gets all the press in/with bone density but Vitamin K could be just as important IF I only knew these things 20 years ago. Here is two good articles about K2 for dental caries/IE cavities. https...
    • I heard you should put broken teeth in whole milk and then in the fridge.   I cracked off a corner of my back molar recently.  It doesn't show, but I can empathize.  A celiac relative cracked off both of her front teeth.   My Asperger sense of humor says it's time to go shopping for a grill!  Maybe adding a calcium supplement to balance out the magnesium will help.  The body leeches calcium out of teeth and bones when it needs more.   Egads, that mak...
    • Ugh!  I am so sorry!  I just cracked a tooth (vertical) on either a macadamia nut or mint chip ice cream.   I hope the crown does the trick or the tooth is lost.  I did the same years ago with a raw carrot.   No hard stuff for me!  I hope you can get it fixed or at least protect it for a while.  
  • Posts

    • I was. Referred to a dietitian but  she noticed before I had my biopsy I wasn't on gluten long enough so has given me the option of going back on gluten and having another biopsy or a gene test so opted for genes test so now waiting
    • Plumbago, We are just trying to be helpful. Sometimes as you say a "Cigar is just a Cigar". How is your Iron? Your Hemoglobin seemed to be on the low normal side. Here is a study on Iron status and sleep quality. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4480468/ I hope it is helpful. I don't think you have really bad sleep apnea or your C-reactive proteins would be higher or according to this this research that I came across...
    • Four months isn't very long. As long as your numbers keep going down you should be good. CYA I'm not a doc.