The Celiac Story: Part III

celiacgraphicNote: This is the latest in a series of posts about The Kid’s Celiac disease diagnosis. They will all be collected under the Gluten Schmuten category tag.

Medicine has come far since leeches and sawbones. Think about AIDS drug cocktails and the DaVinci Robot. Bariatric surgery and joint replacements. Antidepressants, anticoagulants, and anti-inflammatories. Antibiotics. For crisssakes, antibiotics, right? I mean, they kill all of the bad bacteria without killing the good stuff flying around in your body.

And then I think about the unpredictable and unreliable ways that we diagnose disease. I could tell you lengthy stories that I’ve heard about how people are diagnosed with Alzheimer’s disease, or, rather, misdiagnosed with dementia. Digressing…

It’s with this in mind that I offer what Children’s Hospital Boston says about diagnosing Celiac’s disease:

Diagnosis most often begins with a blood test. While these tests are generally quite accurate, sometimes a person who has celiac disease will test negative, and someone who does not have it will test positive, so it can’t say for sure.

It’s like the toddler diarrhea of diagnostic tests, which is why you have to go further:

After the blood test, your child may be asked to come in for an endoscopy, during which the physician will take a few small biopsies. This is the most important test to see whether your child has celiac disease, because it will allow the doctor to examine the villi. For the endoscopy, your child will be given medicine to make her feel relaxed and sleepy, and may also receive anesthesia.

So, the blood draw had a very good chance of being a false positive or false negative. Regardless of the result, we were likely on the road to Endoscopyville. The Wife was mad because there would be a chance that the test would come back negative and this rather invasive procedure would have been all for naught. We should have known by know that high expectations in this realm are foolish.

I won’t get into specifics of the day other than to say that The Kid did well. We had to be at the hospital two hours in advance and stay almost two hours after for a 10-minute procedure. We found a very timely episode of Sesame Street, which calmed the post-anestesia screaming. And, as if there was need for further proof that The Kid is my child, she waved goodbye to every doctor, nurse and orderly on the children’s surgery floor, but refused to greet the very nice nurse who took her IV out. Scowled with the burning flames of hell at her. That, my friends, is a Paventi.

The doctor said that the intestines looked pink and okay, but that the microscope would be the only way to tell definitively. About a week later, we were still waiting to hear. The Wife called the office demanding to know what happened. Apparently, our doctor was on grand jury duty and could not get to his patients. She wrang the news out of the nurse that the tests were all positive. I spoke to the doctor later who said that the villi showed all of the telltale blunting related to Celiac’s disease.

We made an appointment with their office’s nutritionist.

And that was that.


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