Friday, September 20, 2013

My Kids Have Celiac Disease Chapter 1: The Diagnosis

**I'm just a mom with no medical training whatsoever. The reason I'm sharing this story is to raise awareness for celiac disease and encourage people to get tested. Don't substitute this blog post for a conversation with a doctor.**

Chapter 1: The Diagnosis

At Ember's 3 year old checkup, our pediatrician and I were worried about her lack of growth. In fact, she hadn't grown over the past year at all and had dropped to the 6th percentile. For the first time I heard the label "failure to thrive" mentioned. We discussed her diet, and I brought up some concerns I'd been mulling over.

"She has the healthiest diet of any kid I know. We eat whole foods, lots of lean meat and whole grains, she'll eat any fruit or veggie I serve her, and she drinks water almost exclusively. But..she won't eat bread. Or noodles. Or cookies or muffins or cake. I'm starting to think she has a wheat allergy."

Her doctor looked at me seriously. "Does wheat or gluten sensitivity run in the family?"

"On my husband's side, yes."

"Let's test her for celiac disease, to rule it out, then go from there."

A week later her test came back positive. A month later so did Katelyn's (4.5 years old at the time).

As soon as we got the results, I took her off gluten, which is not what you're supposed to do. You're supposed to wait for a specialist to confirm the diagnosis with an endoscopy. But she was so frail and sickly and now that I knew what was hurting my baby, I couldn't help it.

The first time I cried about Ember's diagnosis was after Texas Children's Hospital called to register her as a patient. My kids have always been very healthy - we eat clean and rarely get sick. I had taken it all for granted, and I realized I had no control over this.

The evening before her first appointment with our gastroenterologist, my in-laws came over for dinner, then took Katelyn and Evelyn home to spend the night. As they pulled out of the driveway, Katelyn told my MIL shakily, "I'm going to miss my sister." I hadn't realized that they had never spent a night apart since Ember was born 17 months after Katelyn.

The next morning I drove downtown in rush hour traffic. Dane had gotten only a couple hours sleep after working into the wee hours of the morning. I woke him as we neared the medical center so he could help me figure out which building held the Texas Children's Hospital gastroenterology clinic. We took a few wrong turns in the maze of brightly decorated, wide halls, but that was probably good because it gave me some perspective. There were parents there with much sicker kids than mine.

Dr. Fishman was kind and friendly to Ember. And he was extremely respectful to my motherly instinct. We discussed the major lifestyle changes that were upon us, scheduled an endoscopy for later that month, spoke to the nutritionist, and made our way home.

A week later we cancelled the endoscopy (here's where I remind you that I'm NOT a doctor, and to not take any of this as medical advice). It just felt unnecessary. She obviously had celiac disease. Her symptoms were clear and her antibody count was very high. We decided to make another appointment to discuss it further.

A couple weeks later, Katelyn's test results came back positive. I got the email when I was in Bible study. I was so shaken I had to leave the room. She had no traditional symptoms, and has always been average size. I was shocked.

We visited TCH again, and this time saw Dr. Ng and Dr. Redel. It's not really any fun to have children that fascinate doctors. Even though siblings have a 30% higher risk of having it, I guess they don't see many sibling groups. Between the two test results and their symptoms, plus Ember"s rapid, positive response to the gluten free diet, we got our diagnoses without endoscopies. However, we will do biopsies at some point, and plan to do genetic testing for all of us. If you're ever in need of a pediatric gastroenterologist, go to TCH. Fishman, Ng, and Redel are all excellent. I felt that Dr. Ng understood our desire for treatment that was as non-envasive as possible (but still effective!).

Dane and I got tested, and we don't have it. Four months later we took Evelyn in for the test, and she doesn't have it. Of course, celiac disease can be "triggered" in people that are genetically inclined toward it, so the three of us will be retested every 3-4 years until we do genetic testing. If Evelyn doesn't carry the gene then she won't be burdened with testing for the rest of her life. The trigger can be anything from an emotional or physical trauma to pregnancy, so we have to keep a close eye on everyone.

Now that I've had a year to pray and learn, I really do feel so blessed. Celiac disease doesn't require painful or costly treatment. It's controlled by diet. I would never have chosen this, but a year into it I can say we will be ok.

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