As you have read here before, my 9-year-old daughter, Emma has celiac disease.  She was diagnosed at a young age and has only known a life without gluten.  Over the last eight years, she has learned a lot, certainly much more about food than her 9-year-old counterparts in the 4th grade.  But as she’s getting older, she is noticing the lack of fairness when it comes to people with gluten-free needs.

This is the first post in a series of four, looking at dealing with a diagnosis of celiac disease in childhood.  This post begins with the turmoil my husband and I went through as we were clueless and searched to find out what was wrong with her.  Then keep watching for future posts, as I incorporate answers from my daughter about her life with celiac at home, school, and with friends.  I hope to relate our experiences and help people who are at home or work wondering about the very same issues.   

It all started around the time Emma turned a year old, back in 2000.  My husband and I were first –time parents, navigating our way through new situations daily.  Emma was so grumpy, I just figured maybe that was her demeanor, which I was worried about because my husband and I are good-natured people.  Honestly, I worried about whether this was Emma at her best and how we would deal with her for the next 18 years.  At her first birthday parties (yes parties) she refused cake.  Yet I forced her to eat it for pictures.  And before you knew it she was crying.  In retrospect, I feel like those “cake moments” were a foreshadowing of what was to come.  It was as if she knew it would make her sick.

The following months were the most trying for my husband and myself.  Emma caught this nasty cold.  You could hear the crackling in her chest when she would breathe.  While she was being treated for that the vomiting and diarrhea began.  She had these frothy, smelly poops that would devour any diaper and clothing she was wearing.  As for the vomiting, it happened on an average of every nine days.   Joel and I can’t tell you how many times we were thrown up on — or nearly thrown up on — by this poor little baby.  She didn’t know what was going on; she only knew that she was miserable

I took her to her pediatrician — who said “kids throw up”.  The second pediatrician took an x-ray of her distended belly and she said she’s just gassy and told me to give her Milicon.  I remember  “losing it” at work when my mother-in-law, who was watching Emma that day, called me and was really worried about her health.  That was one moment when I knew this was beyond just “the pukes”.

Still at a loss about a month later, we brought Emma into her pediatrician for her 15 month check up.  Her doctor started taking us more seriously about her vomiting when he saw that she had lost 10 percent of her body weight – down from 22 to 20 pounds.  After listening again to her symptoms, he told my husband he read something about celiac disease and wanted to test her for it.

Thank God he did.  The blood test came back positive.  I’ll never forget the call from her doctor.  He said, “She has celiac sprue,” he vaguely described that she couldn’t eat wheat, barley, rye and oats, and then referred me to the internet for information.  There are two problems with this advice, first – did any of you know how to spell celiac – let alone sprue – when you first heard of it??  And secondly, back in 2000, there was a lot of skepticism about the accuracy health information on the internet.  But I think this demonstrates how little many doctors knew (and sometimes still know) about the disease.

So we did the best we could until we got to the gastroenterologist. The GI confirmed the diagnosis (eventually with an endoscopy and biopsy of her small intestine) and I finally felt like I was being heard.

Once Emma started on the gluten-free diet, we noticed a difference within a week!  She was a new child!  No more vomiting, diarrhea, grumpy behavior and her distended belly went away.  She was on the road to recovery. And we once again had our beautiful, happy little girl.

We learned a lot during the first year of her diagnosis, and we also had to teach a lot: to family, schools, friends, and some moments were more difficult than others.  Watch for upcoming posts, as Emma and I talk about how our lifestyle at home changed plus, her joys and frustrations with the diet, particularly at school and with friends.

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