How Do You Know? (Part Two)

For us, getting a celiac diagnosis was straight-forward: Ruthie took a blood test, which measured her anti-transglutaminase antibodies (anti-tTg).  Without getting too technical, the anti-tTg levels are the antibodies created when gluten is present in the body  of someone with an allergy to gluten. In the case of celiac disease, these antibodies typically attack the cilia of the small intestine, the gateway for nutrients passing through the rest of the body.  When the antibodies are are high levels, the cilia atrophy, or freeze up, making it impossible for nutrients to be absorbed properly.  Hence, undetected celiac presents as a malnutritive condition; failure to thrive and grow, or, classically, a distended belly.

Ruthie had not exhibited any of these typical symptoms, which is the other insidious aspect of celiac disease; there really is no single set of symptoms.   However, when she was tested, the result was clear: The threshold for an anti-tTg test is 4; in other words, if your result comes back 4 or less, you are said not to have the antibody, and you are assumed to not have celiac.  Ruthie's anti-tTg level was 92.

I remember when Maureen, the nurse from the pediatrician's office, called to tell me the news.  I was alone in my home office, as she calmly explained to me the results, which she ended with, "You were right, Mom."  Tears of joy, sadness, and relief all wrapped up together streamed down my face.  We had an answer!

The very next day we found ourselves at Children's Hospital in Waltham, meeting with the very capable Dr. Tom Walker.  I have made no secret about the fact that I have a massive crush on this man (okay, maybe HE doesn't know...).  His presence is calming and assuring, and what I love most about him (besides his crystal blue eyes) is that he always, ALWAYS, takes time to talk directly to Ruthie, often getting directly at eye level with her, and discusses the very same things he talks to me about, but in a very age-appropriate way.

At our first meeting, he took time to get to know each of us, he explained that the protocol he follows for complete celiac diagnosis is two-fold: blood screening (which we had already done) and an endoscopy where a biopsy of Ruthie's small intestine would be performed, if necessary.  The procedure would help Dr. Walker determine to what extent Ruthie's intestine may have been damaged from celiac.  He told Ruthie the same, explaining that he was going to take some pictures of her belly when she was sleeping and the pictures would help her belly feel better.

Never in my life would I have expected to hear the words "endocsopy" and "biopsy" and feel so calm about it; that is the magic of Dr. Walker (probably his training at Harvard moreso than his blue eyes). 

The endoscopy was scheduled for a few weeks later, and the results were, well, interesting: the damage to the cilia of Ruthie's small intestine could not be seen at the endoscopic level, making the biopsy absolutely necessary.  It turned out that the damage was microscopic, but present. 

The day we learned of the results, we were out at Kimball Farm in Littleton, enjoying ice cream as a last hurrah to summer vacation; Ruthie was to start Kindergarten the next day.  I remember hearing Dr. Walker's voice at the other end of the phone, and hearing the words, "This isn't news I like to deliver, but I know you crave answers, and I have some."  I assured him I was happy to have answers, being that I am all about solutions, and thanked him for his time.  And then I got ready to prepare Ruthie and the rest of the world for exactly how we were going to handle the news.