Sunday, August 15, 2010

Our Celiac Stories

Me around 3 years old, already living a happy gluten free life.



I'm a life long Gluten Intolerant, whose story is probably a little different than most people.  I was diagnosed  with Celiac disease around 18 months old, after my parents desperately struggled to figure out what was wrong with me and my digestive system.  I can only tell you the story as I remember my mom telling it to me, I don't remember any of this happening  as I was far too young, which I suppose is it's own blessing.  I can't imagine how my mom dealt with a toddler who could barely communicate that my stomach hurt.  

The story goes, that I was such an amazing child that I was talking, walking, and potty training at 9 months old, this gave the pediatrician the idea that I should start solid foods.  I was served Ritz crackers, mac and cheese, breads, and all sorts of yummy foods.  My parents started noticing problems after a month or two of eating all these foods.  One of my big symptoms in my Celiac experience was vomiting, my dad still has bad dreams of my projectile vomiting episodes.  Now what do you give a child with an upset stomach who is throwing up??  You got it!  Crackers!  You can guess how that ended.  As the months wore on my Mom describes my bowel movements changing drastically to the point where foods with gluten went through me completely undigested.  This whole experience was dotted with visits to all sorts of different doctors, most of whom had no idea what was wrong with me.  One even suggested I had the flu, or a stomach bug, and drinking Coca-cola would help me.  Fantastic!  Should she put it in my bottle too?  Bozo!  After months of frustration, and countless referrals I was seen at Oregon Health Sciences University, Doernbecher Children's Hospital (OHSU) by the wonderful Dr. Annie Terry, who quickly noted my symptoms and after a number of tests was able to diagnose me with Celiac Disease.  My mom was able to get me on a gluten free diet, and my digestive symptoms subsided quickly.  

Over the years, I remained on a gluten free diet, which was not easy for my mom. She came up with amazing things and hunted for recipes to make me feel special (in a nice way, not "special" weird).  You have to know that during the 1980's it was nearly impossible to find something labeled "gluten free", so she spent hours reading labels, and educating herself to save my tummy.  My dad was a huge help, always peeling breading off my fish and chips and taking buns off burgers for me when we went out to eat.  One of the greatest fortunes we had at the time was living with in driving distance of "Moore's" (flour mill).  Most of you know the most current evolution of "Moore's" as "Bob's Red Mill."  It was incredible to have such great access to rice flours and xanthum gum all those years when no one else was producing these items in large quantities.  

Somewhere around the time I started high school I was given a routine small bowel biopsy and the Dr determined that I "no longer had celiac."  This was great news to me, but my parents were skeptical, wondering how it could just disappear after all these years.  Looking back it was a blessing because with all the other awkward social issues of high school I no longer had to worry about my food choices.  I survived well until I got to my freshman year of college and started feeling ill again, when I got the student health center to administer the new blood test for celiac. I remember receiving the Dr's phone call telling me my celiac disease had resurfaced, while I had an oatmeal cookie half chewed in my mouth.  I believe I recall him saying "I think that should be your last cookie now."  I still laugh at that one.  I went back to my gluten free ways, without too much trouble. I lived off campus the last two years and had a rice cooker, that made life super easy.  After finishing grad school and starting my first job where I had amazing health insurance for the first time in years I wanted to get tested again.  I had, a blood test, a floroscopy, and a small bowl biopsy, all of which came back "negative."  This Dr said that with my history of multiple positive diagnoses and these new results he believes in "shades of grey," maybe I had taken such good care of myself for several years the damage was healed, but he was unwilling to believe the celiac was gone. 

At the time I was living in New York City, so I took this as a license to live it up!  Pizza, Bagels, Cookies, Cupcakes, Beer, you name it I ate it!  And enjoyed it.  Almost two years later I started feeling ill again and had to start back on a strict gluten free diet, which again wasn't much trouble since I can cook for myself.  My new challenge was teaching my new boyfriend and his family about gluten and how to avoid it.  He caught on quickly and we learned a lot of things along the way, like many soy sauces contain gluten, but some don't.  

That boyfriend is now my husband of almost 4 years, 2 years ago we had a gorgeous baby girl, who we decided to keep gluten free.  Not having a good way to test for Celiac at such a young age we figured it best to just avoid it all together.  I have to say, the advances in commercially available gluten free food has made it pretty easy to keep Cecilia gluten free.  At her 12 month check up we asked the Dr to perform a Celiac screen, since they were already drawing blood for other tests.  It came back negative with a very low number of antibodies, my mistake is we did not feed her any gluten in the days preceding the test, but in my opinion it gave us a base line.  Around 18 months old, she had a pretty good handle on her vocabulary and I decided it was time to start a home test of gluten intolerance, I replaced her snacks with the regular gluten versions and fed her what I could to challenge her stomach.  The first couple of days went well, and then her bowl movements changed and her attitude actually changed too, which is something my husband notes as my symptoms.  Ceci bawled one day when I couldn't pull up her favorite show on the DVR fast enough.  This is not my child!  We again requested a blood test, and waited for the results.  Our pediatrician was great, she called to let me know the result was negative, but combined with the physical and emotional symptoms she didn't know how to interpret it and would refer us to a Pediatric GI if I wanted.  I declined and to this day we keep Ceci gluten free, within a few days of returning to a gluten free diet her emotional symptoms subsided, but it took nearly three weeks for her bowels to heal. Maybe we will challenge her again in the future when she can communicate better, but for now we will eat Gluten free.
Good thing rice is gluten free because she LOVES it!



3 comments:

  1. at almost two they do that anyhoo

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  2. i love this blog it's really helping me understand what is and isn't about celiac disease.
    the recipes are amazing! by the way shoprite has the gluten free bisquick!

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  3. Thank you, We are glad to be of any help. Let me know if you have any questions.

    ReplyDelete