Nine Years? Already?

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Category: Wellness Walk Talk


When I read May is National Celiac Disease Awareness Month, it took me back. Back eleven years. We’ve been gluten-free for nine of those years. As I thought about our transition, I realized it’s not been the nightmare I thought it would be. That’s a good thing. How we view food has changed a lot. Overall, our habits haven’t changed that much.

Now that’s interesting.

We were lucky. Andy’s road to Celiac disease had enough classic elements that it wasn’t a big challenge. It started the summer of 2000. We had just  hired someone as a support person because I was going to be traveling a lot over the summer. Meagan was working and earning her bachelor’s degree in education. She has a nephew who has Down syndrome. She seemed a perfect fit. After two weeks of training, I left for two weeks in Ireland for work. I was a little nervous, but Andy seemed to like Meagan.

When I returned, we swapped notes. She told me that every day, no matter where they were, Andy was experiencing copious loose stools. Sometimes they made it to the bathroom, sometimes they didn’t. After a couple of the more “colorful” stories, I looked at her, my mouth gaping and said, “And you’re still here?!”

It took Andy longer than many to get the knack of using the bathroom. He had only really been reliable for a year at this point. We had been turned away from activities, had people refuse to work with him, and fought to stay in the general education classroom for even part of the day because of it. This was not happy news. Yet Meagan stayed. She knew there was more to the story and she already had fallen for Andy’s charm. She was hooked.

Slowly, my dietitian skills began to kick into gear. I recalled listening to a lively discussion about Celiac disease at a meeting of the Down Syndrome Medical Interest Group –USA a few years before. They discussed a study that had not yet been published about Celiac disease in people with Down syndrome. The range of symptoms was stunning. This was not at all what I had learned in college.

I spent the next month really watching Andy and dissecting what was different in his life. We had made just one change in over-the-counter medications. Off we went to the doctor for some blood tests. I learned the results of his Celiac panel (a combination of lab tests that help screen for Celiac disease) just before leaving for a conference. The tests came back “inconclusive.” Rex, my husband, was not willing to do a gluten-free trial at that point. Mostly due to fear of the unknown, I think. Without his support, it wouldn’t work.

While at the conference, I asked my colleagues about the situation. One suggestion was that the filler in the new OTC medication may have triggered lactose intolerance. “Ok, I can work with that,” I thought. Home I went to eliminate dairy from Andy’s diet.

We were rewarded with the end of Andy’s “life-limiting diarrhea” and heaved a sigh of relief. Not one month later I read an article in one of my journals stating lactose intolerance can be a symptom of Celiac Disease.

Oh. No.

I didn’t have the heart to tell anyone. I decided to play the waiting game.

Fast forward two years.

It’s Andy’s freshman year in high school. We negotiated a placement in which he spent time in a resource room and also attended a couple of general education classes. This was a big deal. Our neighborhood high school had not had a student with Andy’s support needs who was not a wheel chair user in many, many years. We weren’t exactly “welcome.”

That’s when it returned. Life. Limiting. Diarrhea.

There was “drama” at school about it that I don’t want to repeat. Let’s just say events that occurred were on the list of abuses Andy has experienced. It the need for protective action distracted me from his health issue. It's the most traumatic experience he and I had during his school years.

A couple of weeks later, we’re back at the doctor. I came armed with new articles about Celiac disease in people with Down syndrome and the recent recommendations about Celiac Disease in the Health Care Guidelines for Children with Down Syndrome. Andy’s pediatrician and I do a lot of learning together. He’s really good about it.

We did another Celiac panel. Again, it came back inconclusive. But this time two of the three tests were elevated. Just not the right two to be a positive screen. This left us with two options:

Because Andy had such clear symptoms, we chose to the gluten-free challenge. The risk to this was if it didn’t help, then he had to go back to a regular diet for three or more months before we could do the biopsy.

We were lucky.

In less than seven days, the life-limiting diarrhea stopped.

Yep. Just like that. (:::finger snap:::)

That was good enough to earn the diagnosis of Celiac disease.

That’s Andy’s story about the road to a diagnosis. Compared to many, it’s a pretty direct path. The average time from first symptoms to a diagnosis of Celiac disease for people without Down syndrome is eleven years!

I like to think that people with Down syndrome are luckier. That they’re diagnosed more quickly.  Though I’m probably fooling myself. I like to think that because there’s been a real push for awareness within the Down syndrome community.

Celiac Facts Page 1w

While I was writing this post I realized I had never seen a fact sheet specific to people with Down syndrome on Celiac disease. So...Here it is!  

Wellness Walk Talk Fact Sheet: Celiac Diesase in People with Down Syndrome




Does your child have Celiac disease?  Do you?   Share your story below. Everyone learns when stories are shared.

Next up: "To Be or Not to Be....Gluten Free."