On October 24, 2011, in Uncategorized, by celiacuniverse

Sept 16, 2002

Breaking of the fast, for Yom Kippur. An annual ritual in the Jewish religion, in which after fasting from the previous night, family gathers to “nosh”.  For me, it was always a question of how many bagels and how much spinach casserole (just a little flour) I could eat. Unfortunately several hours later, I’ve never had to run to the bathroom so quick in my whole life. Was it something I ate? Did anyone else get sick? No. But, I felt otherwise well, and by the next day, pretty much back to normal.

Sept 27, 2002

Shan et al. from Stanford provide the evidence that tTG is the auto-antigen in celiac disease in the prestigious journal Science


Mid-October, 2002

On most call nights I would have a late night snack, which consisted of a few “Uncrustables”, a Smucker’s version of peanut butter and jelly sandwich, or an order of chicken strips with dipping sauces.  Sometimes both! Not exactly part of the food pyramid (http://www.fns.usda.gov/tn/kids-pyramid.html)that we preach as pediatricians, but it gave me enough juice (juice also not particularly good for you)to keep going.  Check out this link from the NY Dept of Health http://www.youtube.com/watch?v=62JMfv0tf3Q

However, after an evening of call, I remember rounding in the morning, having not felt like dinner, but felt like a new person.  I noticed a general loss of appetite for a few days, but again felt quite good.  I was calculating calories every day for patients, estimating how much weight a baby or child should gain, but I knew I wasn’t eating more than 1500 calories a day (unless it was a call night).  I also recall a day where my shoulder hurt (arthalgia) to the point that it was difficult to put on my seatbelt.  As a former-medical student, turned doctor, I tried to give myself a unifying diagnosis, unfortunately the two options in my mind were Crohn’s disease (ccfa.org), and celiac disease (celiac.org).

I knew how to test for both, but I needed a middle-man, one of my future peers, an adult gastroenterologist to complete my evaluation.  I had seen a GI doc during winter vacation in college for abdominal pain, and given an anti-spasmodic with a presumptive diagnosis of irritable bowel syndrome or IBS.  I had an upper GI and small bowel follow through (UGI-SBFT) with barium, that did not demonstrate any evidence of Crohn’s disease.  Interestingly, it did suggest stomach inflammation.  (To this day I have never seen an otherwise healthy patient with that description type on an UGI-SBFT).

Now, at what point in my career should I have figured out that eating cereal without milk, or eating pizza without all of the cheese to eliminate lactose wasn’t exactly my problem. 

 I went back to a different GI doctor, to help figure me out what was going on. But, I had my own agenda, a CBC (complete blood count) and a tTG (tissue transglutaminase for celiac disease).

We went through my history and proceeded to get reassurance that I indeed had Irritable Bowel.  Irritable Bowel Syndrome, you have to be kidding me. No freaking way, I was leaving with that diagnosis, and I proceeded with the following dialogue.  Fortunately, this doctor was Danish, and Scandinavians have the throne for celiac awareness in my eyes.

What I remember saying: “I am playing the best golf of my life (with a recent round at the Orchards, still career best of 93) and I just accepted a fellowship at Harvard in GI.  I understand that these symptoms are vague, but this is not IBS. I would like to have a CBC and tTG and perhaps we can go from there.” I am not sure what he thought about that, but I had been preparing for a career in this field, and it just felt different.

48 hours later, I called the lab (pre-HIPAA), 4 pm on a Friday afternoon and got the 411.  Actually it was 238, my tTG was a whopping 238. (Normal in this lab was less than twenty).  I remember pacing in my apartment a few minutes.

I don’t remember at what point I decided that I would invoke my first professional courtesy call to my future GI colleague.  I left a message with his answering service, and he called me back.  As I would with one of my attending physicians, I reported my TTG, and normal CBC, and proceeded to ask, “What day next week can you do my endoscopy?” We needed to confirm a diagnosis of celiac disease. Was I really, 27, a new celiac disease patient? Was that even possible? Of course it was.  It was 2002, and celiac disease although around for centuries was just warming up. This week of my life I remember as it was yesterday.