“Failing to Thrive.”

Three little words written on my 9 month old daughter’s medical chart.

Three little words that made me and my husband sick with worry.

We thought we were going to the pediatrician for a routine checkup. But just a few minutes into the appointment and the nurse practitioner was showing us our daughter’s growth curve, that had lost its curve. Where the line should have continued into a perfect curve it had become a flat, worrisome line. I had noticed that she hadn’t outgrown any of her clothes for a while. We also knew that she had vomited a few times after eating whole wheat baby cereal (which we had mentioned at our baby’s six month appointment, and the nurse brushed it off as nothing). I knew gluten was the reason for all this confusion. The nurse started asking us question after question, “How old is your home? Do you have lead paint in your home? Tell me every food that your daughter has ever eaten ever. How often do you feed her?” The nurse ordered every test she could think of for our little girl.

We knew we had to figure out why she was not growing, but it was difficult taking our baby to the lab to get poked and prodded. The lab did a Celiac panel, they tested her stools for worms, they tested her urine for sugar, and on, and on, and on. I never realized how difficult it was trying to get a urine sample on a 9 month old. We went through every spare onesie we had in the diaper bag that day. We would have to wait a few days for the Celiac panel, but everything else came back normal.

Finally, we got the Celiac panel back. Her numbers were triple what they should have been. Our nurse practitioner scheduled an appointment with a pediatric specialist for us two hours away at a major hospital. At the specialist, the doctor told us that Celiac disease was rare in such a young child, and it was probably something else. Oh no, not this again! More labs? More uncertainty? She requested the lab values from our clinic back home. After waiting for an hour, the lab values showed up. The specialist took one look at them and said, “Wow, she has high numbers. Looks like she almost certainly has Celiac disease. “Thank you Captain Obvious.” She ordered a biopsy. The specialist didn’t even touch our daughter, just read the same lab values as our doctor at home, and sent us on way with a big fat medical bill.

Two days later, we made the two hour car trip again to a children’s hospital. My husband, Seth, was so worried; I don’t think he slept the night before. Seth is a paramedic with a ton of medical knowledge, so it would be safe to assume that with all that knowledge he would be fine…a biopsy…no big deal! Nope! Seth uses that knowledge to freak himself out! When he is helping a stranger he is calm and in control of the situation. When it is our children, he automatically thinks of the worse situation (and he knows exactly what the worst situation is). He was thinking about how potentially dangerous anesthetics can be…and he was rattling off statistics about how many people a year die from never waking up from anesthetics… a biopsy that’s major surgery!! Seth could not understand how I could remain so calm. Well, I don’t know any of that fancy medical stuff. I’m one of those people that believe the doctor knows best, because I sure as heck don’t know! In my ignorance, I didn’t even know what to worry about. Also, I knew God had this under control. Worrying was not going to help anything at all, so what’s the point?

In the waiting room the reality hit me: What if something did go wrong? This was surgery after all. What if I don’t ever see my beautiful baby daughter again? I prayed. In that exact moment my eyes were opened and I saw all the families around me. The biopsy only took about 30 minutes. There were other families in that waiting room that would be there all day. They were facing far worse medical issues than we were. Maybe, some of them wouldn’t ever see their child again. We were in a children’s hospital! There were children and babies there that were dealing with cancer! How selfish of me to be throwing a pity party because my daughter might be diagnosed with Celiac disease. No, we were the lucky parents that got to hold our daughter in just a matter of minutes.

The biopsy results were reviewed by the board of pediatric gastroenterologist, which was ruled as inconclusive for Celiac disease. She was so little and had such a small amount of table food that her intestine showed some signs of damage, but not enough for a full diagnosis. The treatment: no gluten……EVER. So we have a “gluten intolerant” daughter. But thanks to the three little words, “failure to thrive,” our insurance had no problem jacking up our premiums.

Going Gluten Free

I was still breastfeeding her during this time. I don’t know anything about gluten traveling through breast milk, so I stayed away from it too. On the car ride home from the hospital, we stopped at a sandwich shop for lunch. (Yeah, that’s how fast the biopsy was, we were on our way home before lunch! Why were we so freaked out again?)

It wasn’t until we got back in the car and I was halfway done with my sandwich when I said, “Umm… this bread has gluten in it, doesn’t it? This is going to be difficult!”

I have to say though; this was the first “diet” that I did not cheat! I was not dieting because of my own insecure “I want to be skinny” mindset. No, I was on a gluten free diet so my daughter could grow again. I wasn’t going to cheat, because cheating could stunt her growth.

First Gluten Free Shopping Experience

I went grocery shopping with my mom as she had been eating gluten free for about fifteen years, so this was an obvious decision. Mom took me to a local grocery store that sells specialty gluten-free foods, as many stores do not carry such items. Shopping gluten free was a real eye opener. It’s easy to spot a quality brand from a not so quality brand (example: Why is there gluten in this brand of cheese????? Cheese is something that SHOULD naturally be gluten free).  It is overwhelming to think of all the different types of flour. I knew two types of flour before all of this: white and wheat. Now, I can’t even count how many different types of flours are in my pantry. Price is a totally different factor. Gluten free cost MUCH more than regular food; $6 for a bag of pretzels! Are you kidding me! I almost had a break down in the middle of the store. There was no way we could afford to eat this way. Thank goodness for my Mom as she helped me decided what types of flour I would need and the basics to get me started. She gave me a big hug because she could tell I was having a panic attack thinking about the cost.

Today:

Our daughter is growing like a regular toddler. She is healthy. She is THRIVING! She also understands that she can’t eat everything. Nothing like hearing a toddler ask “dat goobin fee?” We have also educated all the Sunday School teachers about gluten free snacks.

We have also learned that Seth is gluten intolerant (he did not have a biopsy, just blood work). It is my personal challenge to come up with gluten free recipes for whatever Seth is craving.

My Mom loves that she has “gluten free buddies” to cook for. She loves that she isn’t the only one eating weird food. She has been a huge life savor sending us home with all kinds of gluten free food: pumpkin bars, apple crisps, and Seth’s favorite: angle food cake.

If we can survive this, anyone can. It is worth it for your health!

What is your story of going gluten free? Did you find it as overwhelming as we did? Please leave a comment, I’d love to hear from you 🙂

Anna