This Gluten Free Love Story was lovingly submitted by Natasha
My 7 year old daughter, Fiona, has Celiac Disease. She was diagnosed at age 5. Fiona handles her Celiac with such grace and bravery. It by no means defines her and never will. She is completely comfortable asking if something is gluten free, and is always happy to explain it to someone unfamiliar.
In 2010, Fiona had been consistently complaining of stomach aches for a few months. We honestly didn’t think much of it. She would complain, but then play HARD outside for hours. It wasn’t debilitating, and the majority of the time she seemed perfectly fine. (It’s amazing what you live with when it’s all you’ve ever known.) It wasn’t until her kindergarten teacher pulled me aside at school, that I realized we had a genuine issue. Mrs. S said Fiona was complaining EVERY day after lunch. Sometimes it was her stomach, and sometimes her head. EVERY single day.
My Pediatrician was amazing. I conveniently had an appointment for Fiona’s younger brother that week, and brought it up. She immediately asked if she had ever been tested for Celiac. At this point, Fiona (and her twin brother Dashiell for that matter) had never been screened for anything out of the ordinary. Blood work was ran, and it came back a “weak positive” for Celiac. My husband and I started researching online…and freaked out. We got an appointment two days later at The Celiac Disease Center at Columbia in NYC, for a second opinion.
The Doctor at Columbia was AWESOME. So patient with us, and incredibly sweet with Fiona. She ordered more extensive bloodwork, and examined her belly etc. She explained that there is no such thing as a “weak positive”. That is just lab mumbo jumbo. She said its like being pregnant. You either are or you’re not. You can’t just be a little pregnant. Wouldn’t that be interesting?
Anyway, the bloodwork came back more conclusive and an endoscopy was prescribed. She suggested since Fiona wasn’t in pain all the time, we didn’t need to do it immediately, but advised to do it in the next six months. We opted to wait until kindergarten ended. It was already April, why not wait two more months to put our 5 year old through a surgical procedure? In retrospect, this was a silly decision. Oh well, you live and learn, right?
For the most part, the endoscopy was pretty standard. However, it’s PARALYZING to see your kid completely drugged out. On top of that, the nurse had an impossible time finding a vein for Fiona’s IV. She kept stabbing and starting over, and drugged out Fiona would moan. This SUCKED for me. I was already emotional, but this sent me over the edge.
I will never forget it. The Doctor came out when we were in recovery and informed us that on first glance, Fiona had a perfectly healthy intestine. No cobblestone at all. He said she could eat whatever she wanted! He thought maybe the bloodwork indicated Latent Celiac, which we would have to monitor over time. From the hospital, we took starving Fiona to the diner! She had a huge gluten filled Belgian Waffle. INSANE. Well, long story short, the biopsy came back positive. We had caught it super early. Even with all of this, we were still shocked.
Before telling Fiona the results of her procedure, my husband and I met with a nutritionist who specializes in Celiac. I was a HOT MESS. So overwhelmed and sad for my sweet girl. I’m probably the only parent who was crying over the fact that her then 5 year old kid would not be able to drink beer in college. She must have thought I was nuts. It was an invaluable meeting though. Simplified things ten fold.
I worried about EVERYTHING. How she would feel at parties or at school when she couldn’t partake in the holiday celebrations. It’s a lot to take in the beginning. But you know what? Fiona was a ROCKSTAR. I think she felt uncomfortable for so long, that a solution was welcomed. Truthfully, every class has a kid with some kind of ailment. She was just joining that club.
It’s now been two years since the diagnosis. It’s not simple, but it’s completely manageable. As a family of five, it’s harder to be spontaneous food wise. It takes a lot of planning and preparation. There are way worse things in life. We pretty much have it down to a science, and Fiona is doing incredible. I am so proud of her. That’s my Celiac love story in a nutshell. I love my spunky, beautiful, compassionate girl. I LOVE my sweet gluten free Fiona.
My 6 yr old was just diagnosed this past fall and like you, I had a hard time when I thought about him not being able to have a regular beer when he’s older. I guess it’s just the sadness over him not being able to do the same things as everyone else and the realization that it will be for the rest of his life. I am just so grateful that this will be the only way of life he knows. I am also glad for you and your family that your daughter was diagnosed early and you had the wonderful doctors you did.
Thank you for your kind words. From what I’ve heard, the teenage years are when it becomes complicated. They test the limits. We shall see. I’m sure they will learn quickly that it feels awful to “experiment”. It’s hard to explain to a 7 year old, long term damage to her body. It’s just too big for her to truly comprehend. The few times she has ingested gluten by accident, she has felt terrible – but just for a day or so, so in her mind, it’s not so bad….
I love your story of your sweet Fiona. My son was diagnosed at 16, 1 yr ago. I can soooo relate to the hours spent crying over “not being able to drink beer while off at college” thing! I have imagined my self sending care packages to my son with GF beer! lol crazy i know! I cried when i realized he would have to have a gluten-free wedding cake! He has NEVER cheated, but like you said, the teenage years can be difficult. It hasn’t been easy for my son, but he is learning to adjust … It’s a lifestyle change, not just a diet change. No more going out to lunch with friends and grabbing a fast food burger. At first we thought “But hey! you can have the fries”! until we learned a bout cross contamination. It’s hard to be “different”, especially at that age. Like you, i have spent many hours crying and worrying about his future and how difficult it may be… room mates sharing a gluten kitchen, gluten-free wedding, etc etc… It gets overwhelming at times. Thanks for sharing your daughters story 🙂 It’s things like this that help us all, knowing we are not alone. It’s hard for moms because we just want “normal” for our kids. Celiac and living gluten-free is our “new normal”. I believe it will get easier with time and as my son says…”It’s only food”.
I think you prefectly captured the frustration of every parent of a kid with a food allergy, no matter what the allergy. We’re not celiac, but I read this blog so that I am aware of the struggles of others and to remind myself to show compassoin to everyone. My son is tree nut and peanut allergic, which is its own minefield. In fact, this last SAturday as I was doing our shopping, I was crying down the isles of the store feeling sorry for my son and all that he was missing. I got out and reminded myself, he is not missing out on things, just living life differently. Anyway … thank you so much for sharing your story and all the best to your family.
Thank you. That is such a great way of putting it, living life differently. I may just use that. 🙂
That is interesting that the small intestine mucosa looked normal but the biopsy was positive. Do they always biopsy? I have celiac disease but begged off the endoscopy since I have other heart issues that made the procedure dangerous. My blood work was positive for me and my sister who was having GI problems also at the time so that was enough for me and my doctor. However, every clinical trial says you must be biopsy proven to participate. Good luck to you and your family – I know it is tough at first but I also am feeling better about it after two years of gluten free life.
I know some people who decided to forgo the endoscopy (for their kids) and only went by the bloodwork results. It is a personal decision, but it is the only way to 100% confirm the diagnosis. Maybe that will change over time. Hope you are feeling better.
Dear Natasha,
We’re also in year 2+ with our 6.5 y.o. son in Boston. And you hit it on the head. Getting a diagnosis at 4 was amazing, because he has no memory of gluten, but he does remember always being tired and having a stomach ache. You captured to a T our experience. Our GI doctor kept us calm and in line by saying, “If you’re going to get an autoimmune disease, this is the one.” Best of luck.
Natasha,
Thanks for sending this in. It is great to hear someone who is feeling the same things I am feeling. My daughter is about to have the endoscopy next week. I have CD and even the Dr said, she probably has it and if it doesn’t show up now, the future will probably hold it for her. She hates all things medical. And I feel awful for transferring this to her. Do you know of a good site for kids? I am still learning all the CD stuff for adults. So over whelming!! But, she has been such a trooper. She had been picking and choosing her meals like a pro. Kids are such an inspiration!!!
They really are amazing. It helps that so many kids have issues these days. Peanut free, diary free etc.. We never really looked for an online site for her. How old is your daughter? We bought a book called, THE GF KID, A CELIAC DISEASE SURVIVAL GUIDE, written by Melissa London. The author was 11 when she wrote it and definitely helped in the beginning. Good luck!
Fiona is beautiful and you are wonderful parents!
She will have a long healthy life–and no worries, she’ll be able to drink GF beer in college too! 🙂
You are so right, Mom—there are waaaay worse things in life than a gluten free diet and celiac.
Thanks for sharing your adorable little girl with us!
I smiled at the beer-worries. I never cared for beer (was more of a wine fan) so I don’t have to miss beer. You have a special little girl. What wonderful parents you are!
This story hit very close to home for me. My daughter was diagnosed with celiac at age 3, she’s now soon to be 5. It’s such an intense time after diagnosis, I was a hot mess too! We also go to Columbia Celiac Center and love our doctor there who has always been so good with our daughter, and us. I live in NYC and am a moderator for a local online yahoo group for families of celiacs, it’s called NYC_families_celiac. We’re always looking for more people to add to our support system.
So glad to hear you daughter is thriving! By the time our girls are in college I bet the bars will have a gf tap 🙂 Or maybe it’s better they don’t, ha!
-Dana
Thanks, Dana. I will definitely sign up for your Yahoo group. We now take Fiona to St. Barnabas in NJ, because it’s closer. That visit to Columbia was invaluable though.