Tuesday, September 24, 2013

My Kids Have Celiac Disease Chapter 2: Community

(Also see: My Kids Have Celiac Disease Chapter 1: The Diagnosis)

My first post-diagnosis shopping trip was awful. I'll never forget how it felt, mom of a newly diagnosed celiac (not to mention another whose positive test result would come a month later) just wanting to help my kid feel better and heal...but not really knowing where to start. I was standing under the glare of fluorescent lighting, tears in my eyes, blurring my view of the towering shelf of overpriced gluten free products. I was completely overwhelmed. I must have looked it, too, because a woman tapped my arm and said, "First gluten free shopping trip?" She ended up walking me through the gluten free products on the shelf, giving knowledgable reviews as a veteran celiac mom. She gave me a pocket-sized book from the Celiac Foundation. She gave me her phone number. Her kind interaction encouraged me more than anything else could have. It gave me hope that other families were not just surviving, but thriving with celiac disease.

A couple of weeks later I contacted a friend (hi Vicki!) whose son has celiac disease, asking for advice.  She called me and shared her favorite kid-approved recipes, tips, and products. My oldest daughter has been exposed to gluten twice since diagnosis, and reacted severely. I make a special, safe snack every time I drop the kids off at church or a birthday party. I pack lunches just for day running errands. I read every. Single. Label. I bought a new toaster. She's the only person who gets it all, as a mom who has been there before.

Just last month another celiac mom friend (hi Stefanie!) tagged me in a Facebook post. "Look what I found!" A new gluten free pizza crust had hit store shelves, much to our mutual joy. In fact, her specific comment was "Dancing in the aisle!"

Today, at the International Celiac Disease Symposium in Chicago, a bad apple of a speaker nearly ruined a day filled with intelligent, helpful talks. He falsely claimed that occasional, moderate amounts of gluten are fine for celiacs, that celiac disease is preventable through environmental factors, and that people who worry about gluten "especially women" are obsessive. (That's insulting to me on so many levels. I really don't have anything else to say about such ignorance.) At the end of the session, a microphone was available to audience follow-up questions. I screwed up my courage and walked up. I asked for clarification about environmental factors, since my kids don't have any of the common risks (specifically, they were exclusively breastfeed for 6 months, late introduction of grain into their diets, and they aren't c-section babies). For one, he didn't listen to the question (that wasn't that insulting - he wasn't paying attention to anyone's questions). Also when he did, he didn't understand it, so he didn't answer it. Everyone in the audience and the other speaker (who was awesome, by the way) knew he wasn't getting it, but I gave up and made my way back to my seat, visibly upset. Ok, I was crying like a weenie. A kind woman named Connie has been diagnosed for 17 years stopped me on my way to my seat and told me that basically that guy was full of it (I agree).

I sat down, and a psychologist who is a celiac patient and a mom of a newly diagnosed 8 year old tapped my arm. She had tears in her eyes and said "This is not your fault. You couldn't have stopped this." She looked into my weepy eyes and said "I get this too," referring to the heartache of seeing your child in pain, saddled with a lifelong condition. She gave me her card and asked me to email her.

After the talk was over, a dad from New York stopped by my table and encouraged me to not blame myself. His wife feels guilty for introducing grains a month earlier than recommended. Their 3 year old daughter was diagnosed last year. He said, "You couldn't have stopped this. It's not your fault."

Encouragement, support, and sympathy from people who get it has been invaluable these 11 months. This disease takes up a large chunk of my thought and time - not because I'm obsessive, thankyouverymuch - but thanks to the time, trouble, expense, and effort of a 100% gluten free diet, my kids are healthy. And that is 100% worth it.

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.