Our Celiac Story

So one of the things that has caused so much change in our household over the past year is my son’s health.  Here’s the story – if only to help another family who might be going through the same thing.

In the Spring of 2013, my (then) 9-year-old started complaining of stomach pain, pretty consistently although not daily.  However there were no other symptoms – just pain.  In July he had a check-up in which his pediatrician could find nothing wrong.  In September he had his yearly physical, still with occasional complaints of stomach pain.  The pediatrician suggested we try a dairy-free diet in case he might be lactose intolerant.  We did that and there was no improvement.  Around October, the complaints of stomach pain were nearly daily and a new symptom was added – severe anxiety.  About stuff that was normal for our family – going out to eat, traveling in the car anywhere more than 15 minutes away, going to Grandma’s house.  If we even suggested doing any of these things he would either throw a temper tantrum or just get really upset and cry.  We didn’t know how to handle this and did the best we could.  Because there were no actual physical symptoms, we really thought it was a behavioral issue.  By January, the stomach pain and anxiety were extreme and interfering with our family’s daily life.  I really started to wonder if the pain and anxiety signaled a psychological problem.  However, I also noticed that when he returned to school, his adjustable-waist pants needed to be tightened -which I knew wasn’t a good sign but thought it was just because he’d been picky about eating.

So back to the pediatrician we went.  He had lost 6 pounds since his appointment in July (which is a lot for a 10-year-old who only weighed about 65 pounds anyways!).  The pediatrician ordered some blood tests and we got results a couple of days later that his antibodies were elevated – indicating celiac disease.  The pediatrician recommended we put him on a gluten-free diet and set us up with an appointment to see a gastroenterologist.

We put him on a gluten-free diet right away and saw improvement within a week.  Less pain and the anxiety nearly disappeared.  Amazing!  I was so thankful!  I started to do research online about celiac disease.  As an auto-immune disease, it is closely linked with Type 1 diabetes.  Both Dave and I have extended family with celiac, and as you know we also both have diabetes in our families.  The other interesting thing I found out was that canker sores are a symptom of celiac disease.  My son had had very frequent canker sores for about 2 years prior to this!

It took two months to get in to see the gastroenterologist and my heart just broke when I heard what they said.   They told us that he would need to be on a gluten-containing diet for TWO MONTHS prior to an endoscopy and small intestine biopsy in order to accurately diagnose celiac disease.  Now, I had seen in my research that a gluten-containing diet was necessary (and in fact I had called our pediatrician to ask about this but they said it shouldn’t matter (wrong!!)) but I thought they would say maybe a week or two.  And my son had been doing so well on the diet that I really didn’t want to put him back on gluten until it was necessary, and I thought one or two weeks we could handle.  But TWO MONTHS???

And, not to mention, this is a 10-year-old we were talking about.  He knew enough about what had been happening that he wanted no part of going back on a gluten-containing diet.

So I made a hard choice, that at the time I felt like my only choice – to try to sneak some gluten into his diet.  Because I knew he would just refuse to eat if he thought something had gluten in it.  And let’s face it, you really can’t make someone eat something.  So this is what I did for two months and it was awful.  A new symptom arose – headaches.  Daily.  The canker sores came back.  The stomach pain came back.  Not to mention the guilt I felt for giving my child something that I knew was making him feel sick.  Ugh.

Fast forward to the endoscopy / biopsy – it went smoothly.  However, the results came back with no small intestine damage and so they couldn’t diagnose celiac conclusively.  It was such a disappointment!  We left the gastroenterologist with a recommendation to put him back on a gluten-containing diet for 6 months and then come back and retest.  CRAZINESS!

After a long conversation with our pediatrician (which included my disappointment in his recommendation to immediately go on a gluten-free diet prior to diagnosis), we decided to move forward with treating as though he has celiac.  We also got genetic testing done, which confirmed that he has the gene for celiac – just another part of the puzzle.  I feel that the positive antibody testing at three different times, the genetic testing, the family history, the symptoms, and the improvement we see on a gluten-free diet is enough evidence for me that he has celiac – even though a positive biopsy is the gold standard for diagnosis among the medical community.  He is currently on a gluten-free diet and rarely has stomach pain / headaches / canker sores although anxiety is still a part of his life.

Looking back, although I am definitely disappointed in not having an actual diagnosis (honestly, I am concerned about things like college – without a diagnosis will we be able to require them to provide GF meals??), having that period of having to eat gluten again was probably good for my son because he is super-compliant with the diet now.  At first he was not cooperative – didn’t want to eat GF stuff – as soon as the gastroenterologist told him he HAD to eat it for 2 months, he didn’t want to touch it.  Reverse psychology??  ha!

The lesson we learned that I’d want to share with other parents is this – if celiac is possible – do NOT just “try” a gluten-free diet!  Get the testing done first!

Here is a link to my favorite celiac disease resource if you want more info:  http://www.cureceliacdisease.org/

And an infographic of celiac disease symptoms, thanks to http://www.glutendude.com

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3 thoughts on “Our Celiac Story

  1. Hey Aunt Steph! It is really comforting to see more and more restaurants supporting Gluten-Free options. I know Wendy’s does. Emily and I just went to small, well-done Chinese restaurant here in Maryland. They actually had some delicious gluten free dishes. I think Emily got the Chow Mei Fun with chicken last time. Here is the website: http://www.tearifficsomd.com/dinner/

    • Hi Josh! Can’t wait to hear about Maryland when you guys get back! And, yes, we’ve found actually that quite a few restaurants have gluten free menus available. I’m thankful gluten free eating is becoming more mainstream because it means more options for us! Have a great summer!

  2. Pingback: 13-year Old Approved Gluten-free Products | Led By The Shepherd

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