My three kids with Celiac, Passover Recipes and Strange Diagnoses

Here’s a fun fact you may not know about me.  I have three children with diagnosed celiac disease, which makes Passover both the best holiday, and the worst, for us.  So today, in honor of this potentially gluten free celebration week, I thought I would 1) review the odd way each child was diagnosed and 2) provide some personal advice/recipes for those of you who have the joyful experience of feeding a gluten-free child anytime.

The first child to be diagnosed was actually not the oldest one. At four months of age, she fell off the growth chart and except for a brief period back when she was six, she’s not gotten back on. In the years of trying to figure out what was causing her significant lack of growth we had appointments with a: endocrinologist (3), gastroenterologist (5), geneticist, nutritionist (3), and an infectious disease specialist, to name but a few. She had dozens of blood tests, three biopsies, and countless examinations. So, how we were we finally diagnosed?  I read a great deal about the causes of lack of growth, and celiac kept coming up.

Here’s what she didn’t have:

  • stomachaches
  • nausea
  • loose stools
  • a positive blood test for gluten antibodies

Here’s what she did have:

  • a four year delay in growth for her age
  • no appetite
  • dark circles under her eyes
  • mood swings/Irritability

Here’s what the doctors said:

  • Your daughter can’t have celiac if the blood tests were negative.
  • Your daughter did a biopsy when she was three and it was negative so there’s no way she could have celiac now.
  • She just has to eat more. Don’t make a big deal about food.
  • Some kids are late bloomers.

This is how I responded to that:

  • Stranger things have happened.
  • Celiac is a patchy disease and if you don’t take biopsy samples from the place of inflammation, sometimes you’ll miss it.
  • I don’t care if my daughter doesn’t eat at a meal, but she basically lives on air, has no appetite and looks like a scarecrow.
  • I was a late bloomer. In fact, I never bloomed. I’ve been short from day one and stayed that way. But there’s short and then there’s ‘can’t drive a car’, ‘has to shop in the children’s section as an adult’ short.

This is what I did eventually after 10 years of investigating. I went to a private gastro doctor, told him that biopsy was the only way to truly rule out celiac, and I pushed to make it happen.

The results:

  • My younger daughter was diagnosed with celiac and went on a strict gluten free diet.
  • My older daughter, who for years suffered from stomachaches, which after many doctor consults, decided was psychological, was also diagnosed with celiac via a biopsy because of her sister’s positive diagnosis.
  • Two years later when my younger son complained of bad stomach aches, we pushed right away for a biopsy. And he was diagnosed as well.

Now, five years into gluten free, I can safely say:

It’s great we have so many gluten free options today; there’s bread and bourekas and occasionally donuts.  But it’s still hard for children to eat only gluten free. It just is.  Especially when you need portable, tasty snacks.  Especially on Pesach.

Below, I’ve listed some of our easier go to Passover meals that my children will eat:

(Warning! This is for parents who don’t like to cook.)

  • Fried potatoes/onions eaten with cottage cheese.
  • Banana/Choc chip muffins [use regular Passover muffin recipe, but substitute potato starch for matzah flour and add a cup of apple sauce.] (In addition to the smushed banana, and 1/3 bag chocolate chips.
  • Crepes [1.5 cups potato starch/ 1 tsp baking soda/1/4 cup sugar/1 cup milk/ 2 eggs.] Mix really well, and spread thin in pan when frying. A bit gummy but super tasty with sour cream mixed with sugar wrapped inside.

Happy Passover, everyone!

 

 

 

 

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