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Mar 26

Too much

Sam was diagnosed with celiac disease today.

It’s been eight months since he started vomiting daily. Two rounds of antibiotics, one endoscopy, multiple rounds of blood work, two allergists, one ENT doctor, two GI specialists, and a final round of tests that I asked for out of desperation. We got the bloodwork back two days ago, and I’ve made approximately 57,000 phone calls since it was drawn, begging for results, then begging for referrals and finally just begging for guidance because I knew that every bite of celiac was making him sicker.

After a long talk with his GI today, we concluded that it was entirely appropriate to diagnose celiac disease based on seralogical results, the genetic testing we had done after Jessie was diagnosed, a baseline negative celiac test two years ago, and eight months of excruciating belly pain.

I worried so much that it would be triggering for him. That he’d go back to that place, after the accident, when his food choices were so limited, and there were so few things that he could eat. But I think his dominant feeling is mainly one of relief. I didn’t realize how depressed he had been, because he never seemed sad. But he’s so much lighter somehow now. He spent virtually all day out in the living room with us. He still doesn’t feel great – but now he has a diagnosis, and hope that he won’t always feel terrible.

I didn’t realize, until I had to explain to multiple doctors and nurses over the past few days, how truly bad it had gotten. How Sam rarely left his room for long, because it was close to the bathroom. How long it had been since he felt “good.” And how incredibly draining and devastating it is to have him sick and not know why.

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