With Passover near, I thought it a good time to review my personal entrée in the world of healthcare advocacy, and how I got my (three) children diagnosed with celiac, that gluten-free disease, and try and give some pointers on how to navigate this holiday if you have celiac (and not gluten intolerance).
Flashback 15 years ago. My third child is 4 months old, cute as a button, and looks like a plucked chicken. Meaning, unlike my other two kids, she is not plump. During a routine Tipat Chalav (well baby clinic) visit, I see that she’s fallen off the growth chart, and she will remain off till she’s fourteen (but that’s another post). Thus began our journey into the world of FTT, or failure to thrive, an amalgam of vague symptoms of poor growth, eating and weight gain, which no health professional seems to know how to tackle head-on. Over a period of 8 years, we saw four gastroenterologists, four endocrinologists, three nutritionists, 1 geneticist, underwent 3 biopsies (with anesthesia), and more than 20 blood tests. Needless to say, my daughter had a bit of trauma from people wearing white coats for quite some time.
At some point, I just prepared a power point presentation and printed it out so when doctors would ask “why are you here?” I would just hand them the printout and say, “read through that.”
In this country, I think there is an innate sense of love for children; I don’t mean that everyone will love if your child runs screaming around the waiting room, but there is an understanding that children are to be accepted and protected. Which is why many doctors put off invasive testing, or even further testing on children. The truth is that the majority of physical aches, syndromes, ailments disappear as mysteriously as they arrive in children, and physicians loathe to start looking when they don’t have to.
I believe in that model as well. So, how, as a parent, do you know when to push? This is certainly a challenge. On the third, six-month follow up, when the fourth gastroenterologist said, “let’s wait,” I said, “what exactly are we waiting for?” She has had this group of symptoms since she was four months old. She’s nine now. What’s going to change?” I decided to seek out a gastro doctor privately, push for another biopsy, and lo and behold, we had a diagnosis of celiac.
The problem with pushing is that the responsibility is fully on you. But you say to yourself, I’m not a doctor, maybe I’m wrong. True, you are not a doctor, but you are a parent and you do know your child. A friend of mine had a similar situation with her son. He just wasn’t growing, wasn’t growing, wasn’t growing. The doctor kept saying, “come back in six months.” Finally, she said, “this is ridiculous, something’s wrong!” She pushed the doctor for a referral to do a growth hormone test, against his recommendation. It turned out the normal levels were ten, and her son was producing two.
Advocating for your child is certainly a skill because you have to understand the doctor’s attitude, know your material, be courteous and polite always, and know when to stop. These are all difficult skills.
Because of my daughter’s diagnosis, two other of my children were eventually diagnosed with celiac, and we enjoy a mostly matzah free house on Pesach.
To clarify, celiac is an autoimmune disease where the small intestine attacks itself when exposed to gluten and has long-term negative effects on the body, including possible infertility in women, if not managed [meaning not eating gluten]. Gluten intolerance, which many people seem to suffer from today, is the inability of the lower intestine to break down and utilize gluten, creating gas, stomach aches, and diarrhea, similar symptoms to celiac but different cause.
So if you or someone you love has celiac, here are some fun possibilities for Pesach.
Stock on many gluten-free chocolates, (wafers, and pretzels that aren’t available during the year. Kif Kef and Pesak Zman are kosher during Pesach for those who eat kitniyot) so we buy and freeze for after Pesach.
Osem makes a tasty series of gluten-free cakes that we buy and freeze so after Pesach we can take them out for a quick dessert if need be.
This holiday is certainly easier for my kids than Hannukah, for sure, but I try to have special things for them so they don’t feel left out of the dessert time. Instead of matzah brie (fried matzah), try potato flour pancakes with sour cream and sugar! A family favorite.
And one last word about oats. The past few years have produced several lines of gluten-free matzah which are made from gluten-free oats. These are great for those who suffer from gluten intolerance, but the word is still out if those with celiac can really tolerate it. Some of my kids get instant stomach aches so we know it’s not good for them, but many people don’t have pain with celiac, including my daughter, so tread lightly in the oats department if you have a child with celiac.