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Family Story: Jackie Ourman, C.A.F.E.

Our Celiac Diagnosis

Jackie OurmanWe learn so much about ourselves through our children. We see ourselves in their faces, expressions, gestures and behaviors every day. It’s a nice feeling and sometimes a not-so-nice one when you see traits or behaviors you may not be so happy to pass on. I expected this entering into motherhood. However, I did not expect to learn so much about my health through my children.

I learned while pregnant with my first child, that something was wrong. My son, Jake, was delivered pre-term at 29 ½ weeks due to Intra-Uterine Growth Restriction. They did a myriad of tests to try to determine the cause. At the time, everything came back negative. They told me I was ok, but I wasn’t buying it.

Shortly after Jake was born, I started to experience patchy hair loss (alopecia areata) and severe eczema. I also had occasional bouts of inexplicable hives. Visits to dermatologists, allergists and internists and tons of blood work and tests all revealed the same thing…there was nothing wrong. I was frustrated and felt strongly there was a diagnosis out there; we just weren’t finding it.

Jake was diagnosed with life-threatening food allergies to peanuts, tree nuts and sesame at two years old.  I had my second son, Jeremy, shortly thereafter. He was a bit small at 5 ½ pounds, but was full-term and healthy.  We discovered that Jeremy had the same food allergies as Jake but, based on our experience, we felt we could manage. At the time, I remember being thankful it wasn’t a wheat allergy or something incredibly difficult to avoid like that!

My third son, Jarrett, was born a few years later. We saw a big change in Jeremy during Jarrett’s first year. He became an extremely fussy eater, was often constipated, had a distended belly all of the time and was very lethargic. He also only gained only 1 pound the whole year. We knew something was wrong but didn’t know what it was. A friend suggested I test him for celiac disease. The doctors said it was unlikely. I held off for a little while, mostly because I was afraid of the diagnosis.

A few months later, when we visited the allergist, I asked to have Jeremy tested for celiac.  He came back highly positive on all markers. His endoscopy confirmed the diagnosis. To say I was distraught and overwhelmed at the time would be an understatement. I just didn’t see how it would be possible to eliminate gluten from his diet in addition to his other food allergies. I mourned his loss of a “normal” life.

Within 6 weeks of being gluten-free, Jeremy gained 4 lbs, he was incredibly energetic and a happier child. His stomach was no longer distended every day. It was an amazing transformation! However, in that same timeframe, I started to get sick. I began having severe stomach pains and was terribly constipated. I felt that something was very wrong and went to see the doctor.

Blood work, cat scans and all other tests came out negative. After several visits, my doctor sent me to a gastroenterologist. Upon reviewing my medical history she said it would be worthwhile for me to get tested for celiac disease. Ding, ding ding! How did I not think of that before? As a matter of fact, Jeremy’s test showed a positive genetic marker, which means it was likely my husband or I had the disease.  It’s amazing that I didn’t get tested sooner. I think the fact we were eating so much less gluten in the house because of Jeremy may have triggered a higher sensitivity in my body to the times I actually did eat it. That’s the only explanation I can come up with for why my symptoms became severe so suddenly.

I was tested and like Jeremy’s test, it came back positive on every marker. My endoscopy came back positive as well. Since the genetic marker was positive on mine too, I told my parents they should get tested. Both did and guess what? My mom has celiac too! Looks like we’ve been living with this for years and had no idea!

I’ve learned a lot about myself through my children. I’m sure we all have. The celiac diagnosis was eye opening and I doubt my mom and I would have gotten it without Jeremy. If you have a family member with celiac disease, I urge you to get tested as well. It turns out gluten isn’t so hard to avoid. I’m in culinary school now and sharing recipes and resources for living without gluten and the foods my children are allergic to on my blog, CAFE (Celiac and Allergy Friendly Epicurean) by Jackie Ourman every week.  The gluten-free diet is definitely doable!

-  Jackie Ourman
CAFE (Celiac and Allergy Friendly Epicurean)

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