Friday morning came with all the promise of the busyness that the day brings for those making Shabbos. After several days of waking early with Daisie's new schedule, I actually woke up feeling somewhat well rested and bordering on perky. "Today is the day the Lillie's doctor said he would have the results of her biopsy", I thought.
To backtrack, in June we met with a new doctor who is supposed to be tops in the field of pediatric gastroenterology, at a children's hospital about 30 minutes away. We had to wait a couple of months for an appointment, and then a call came one day that there was a cancellation and we could be seen sooner. As the day approached, I felt a mix of excitement and dread. I felt an illogical childlike excitement (in my opinion) that we would meet the new doctor and he would say she was misdiagnosed, it was a mistake, it is really just an upset stomach or some other easier to swallow diagnosis. The dread came from knowing that he would, most likely, confirm 100% what the other doctor said. After all, blood tests don't lie.
When we met the most pleasant doctor in an almost Alice in Wonderland type setting that this hospital had created to make its young patient feel at ease, I handed over the blood tests and ran down Lillie's symptoms and the previous doctor's diagnosis. When I uttered the words, "She was diagnosed with celiac disease.", the doctor interjected, "No she wasn't." My head shot up and I stared at him wide eyed. "What!", I thought. This can't be happening. This scenario was supposed to be unrealistic and irrational. He went on to explain that she was diagnosed by blood tests only. First of all, the lab that was used is known for a lot of false positives and mistaken results. Second, the biggest reason for a false positive blood test for celiacs is Crohn's disease. I have two nephews with Crohn's disease. He said given the family history and the blood tests he felt a biopsy was necessary. The first doctor felt there was no need to put her through that since the blood tests, in her opinion were conclusive.
So even though I was less than thrilled about my baby going under general anaesthesia for the test, I was happy that I would know her diagnosis once and for all, beyond a shadow of a doubt.
But here's the catch, she had to go back on gluten for a period of 6 weeks in order for the biopsy to be accurate. Once someone is on a gluten free diet for a few months, the damaged villi begin to heal and appear normal. Well it's party time then, I thought. I wanted to throw Oreos at Lillie like they were confetti. The doctor cautioned that some parents choose not to give their kids the glutenny items they really like because its too hard to take them away again. I decided that if Lillie would not be allowed to have "real" pizza again, in her life, she was darn well going to have it now. We went down to the cafeteria to eat the lunches I had brought from home. They didn't sell Oreos, but I gave her pretzels and told her to go to town.
About 3 days after Lillie was back on gluten she came into the kitchen in the morning and said "Oooh my tummy hurts, can I go back to eating gluten free." Now if you've never seen an almost 5 year old beg to be put on a gluten free diet, it's pretty pathetic. I stared at her once again bloated stomach and knew in my heart what would be. Nevertheless, I stuffed her with gluten in those weeks, and I also gave her liquid pro-biotics regularly. I found the latter to be helpful in controlling her bloat.
The biopsy was quick, 15 minutes. About half an hour later the doctor came in with very clear pictures of Lillie's insides. He said he can't see anything in her intestines, but about 1/3 of the cases can only be seen when the samples are looked at under a microscope. I peered at the hills and valleys of her small intestines. They looked good, pink and healthy. I knew from the pictures I had seen in books about celiac disease that these kishkes looked great. B"H. I thought about what the doctor said. I'm lousy at math (my husband can't believe I made it through college without taking calculus), but good with cooking math. 1/3 is alot I thought. 1/3 cup of sugar, 1/3 cup of flour, 1/3 cup of oil. All significant amounts. But, on the other hand, 2/3 is quite a lot. That's almost a cup. So if 2/3 of all cases are diagnosed right away, there is a lot of hope, I rationalized. The doctor said if I didn't hear from him by next Friday to call him.
I left a bit deflated because I thought I would know for certain when I left the hospital that Friday afternoon. I had prepared gluten free oatmeal cookies from a new recipe book I recently bought called Veganomican. I had her gluten free challah on standby in the freezer, in case I needed to pull it out. But I didn't that Friday afternoon. We were left with another week of glutenny goodness ahead of us. Then we waited, each day in anticipation until 4:30 when the doctor's office closes, I waited for the call. I tried to plan Shabbos for the coming week. We were invited out and I apologized to our host that I didn't know Lillie's status yet, but would let her know a.s.a.p., so she could prepare appropriately.
Friday morning came and I decided to wait to call the doctor until after I did camp drop-off. I was thinking, "well today is the day the other foot will fall". But maybe it won't. There is hope. Her intestines look good to the naked eye. Maybe the other foot won't fall, maybe it would high kick. I had visions of the Rockettes in my mind as I cheerily made the beds and got the girls breakfast. Then the call came. A few minutes after the doctor' s office opened at 8:30. The doctor gave me the news quickly, like taking off a band-aid. She has celiac disease. He went on to ask if I wished to make an appointment with the nutrionist in his office? Tears were already welling up in my eyes, but I held them in....until I called my husband and the flood gates opened. "It's not bad" he said, "it's an illness that can be treated with diet. It would be worse if it was Crohn's". "Yes", I answered, "I agree, but it's hard to tell a 4 year old that". At about that moment Lillie came screeching down the stairs and shouted, "Is it pizza day today?" Oy vey, I thought! I made a split second decision to allow her to have her pizza at camp, since she'd been on gluten anyway. And, I would tell her when she came home, so it wouldn't be a shocker when she sat down to her gluten free challah that night. "Yes", I said meekly, "enjoy". Then Rosie had an accident on the floor and the baby was crying for her breakfast, and a million other little things that make up my mornings happened, and I moved on with the day.
I had waited to do my grocery shopping that week until I "got the call". As I reluctantly approached the gluten free section of my supermarket I saw a display of ice cream cones. "Hey, they're gluten free...and kosher...with a heimishe hechsher no less", I said to myself. That's odd in the regular chain supermarket. They were also reasonably priced, less than $5 for a dozen. I was told by a celiac that they usually run about $1 a cone. I truly felt those cones were a wink from G-d, Telling me, it will be ok. Maybe it won't be so, so hard.
I bought the cones, and I pulled the gluten free cookies from the freezer I had made the week before, and we went on with our lives... gluten free.
Note: The ice cream cones were Goldbaum's Gluten Free Sugar Cones.
Veganomicon is written by Isa Chandra Moskowitz and Terry Hope Romero, the same authors of Vegan Cupcakes Take Over the World. Which, I feel has the best dairy free, egg free cupcake recipes ever, and they were considerate enough (as many vegans are) to include gluten free recipes as well. I like Veganomicon because it includes some traditional Jewish recipes, like kugel, which I find very hard to make egg free. The recipe below can be found on page 237 of the book.
1/2 teaspoon baking soda
1/4 teaspoon salt
1/4 cup brown sugar
1/2 cup granulated sugar
1/3 cup canola oil
1 Tablespoon ground flaxseeds
1/4 cup soy milk
1 teaspoon vanilla
3/4 cup chocolate chips
Pre-heat the oven to 375F degrees.
Sift together the oat flour, baking soda, and salt.
In a small mixing bowl, whisk together the flaxseeds and soy milk. Add the brown and granulated sugars and stir, add the oil and vanilla, and whisk vigorously until all ingredients are emulsified (about a minute).
Mix the wet ingredients into the dry; fold in the chocolate chips.
Drop the batter by the tablespoon onto an ungreased baking sheet, leaving 1 1/2 inches of space between the cookies. Bake for 10-12 minutes.
Remove from the oven and let cool for 5 minutes. Transfer to a cooling rack to cool the rest of the way.
Yield: 18 cookies.