I remember getting the call from the doctor of my 15-month-old daughter. “Her blood test says she may have something called Celiac Sprue.” I remember asking him what that was, but honestly the only thing I remember about it was that she would have to go on a gluten-free diet. My daughter was so sick. She had a huge belly, she was extremely irritable, and she vomited every 9 days and had a frothy, smelly stool all the time. After that diagnosis in 2000, I now realize those were classic symptoms of celiac. But when I first heard the words “Celiac Sprue” I didn’t even know how to spell it let alone heal my daughter. Once the biopsy confirmed the diagnosis, I went to work learning all I could to help my baby girl who didn’t know any better.

I split this guide up into simple sections for people who may be at different stages of their journey in the new diagnosis.

The Gluten Free Diet – What is it?

Gluten-Free diet is 100% elimination of wheat, barley (including malt), rye, and possibly oats*

*Oats by themselves are gluten-free, however many companies may cross contaminate just by growing and processing them with wheat. If you want to have oats, you must find guaranteed gluten-free oats.

Additives: Some contain gluten, some do not. Take a look at this safe-ingredient list and the gluten-containing ingredient list print them and bring them to the store with you when shopping. Eventually you will get used to the words and recognize them when you read labels.

Sometimes you will find you are at an event or a party and you just need to wing it. It’s no fun when you do not know what your child can and can’t eat at this early stage. To ease your mind, bring a backup plan for dinner or snacks; what works great is bringing a snack that is way better than anything your child will find at the party.

Get through the First Few Days of Gluten Free

Gluten-Free Foods You Can Find Anywhere: Corn, Rice, Cinnamon, Chocolate or Strawberry Chex; Gluten Free Bisquick (see General Mills’ Gluten Freely website with much more) eggs; fruit, vegetables, plain chicken breast, Cheetos (regular or baked); “Hamburger, chips & cheese”: Cooked ground beef put inside Tostitos Scoops and grated cheese melted on top; M & Ms; Laffy Taffy If you need to eat out (on a vacation or away from home) McDonald’s hamburger or cheeseburger (no bun)  is an option. Also Wendy’s has a good selection on their gluten free menu. Just realize that once you go to any restaurant, you are counting on someone else to keep your food gluten-free, and that is a risk you are taking.

Emotions Run High: Adults and Children Grieve

I cried inside the grocery store the first time I tried to find gluten-free food for my daughter. I had high hopes of helping her, and quickly found — at that time—most mainstream stores didn’t carry gluten-free foods, and if they did it all seemed to taste like cardboard. I walked out of the store with Cheetos, Corn Pops (which is no longer gluten-free), and eggs.

I definitely went through a grieving process, which included me feeling sorry for myself; even though I wasn’t the one who had to change my diet. Allow yourself to grieve while you try and manage this enormous lifestyle change. Then put that grief into action by making the best of the situation knowing this will help your child for years to come.

My child was diagnosed as a toddler, so she doesn’t know what she’s missing in the “gluten world”. But children who are diagnosed at ages 6, 10 or even 14 sure do, and that can be a difficult age for a diagnosis. For some, if they have been horribly sick with painful symptoms, they may never be tempted by gluten because they don’t want to go back to the way it was. But for other adolescents, it’s a much more difficult transition. They are grieving as well; at the loss of favorite foods, worried about being different at school and birthday parties, and having to learn this new lifestyle.

First of all, be patient let them have time to absorb this change; but at the same time educate! That is vitally important to this diagnosis. Your child, no matter what his or her age, must quickly start learning about the diet basics so they can have control over the destiny of their own health as they age.

For additional information you can always find a local support group which are extremely helpful.  Including ROCK- Raising our Celiac Kids.

*Updated April 2011

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2 Responses to “Getting Started Gluten-Free: Parents’ Quick Guide for New Celiacs”

  1. My daughter was just diagnosed … I don’t even know Wherre to start… Cleaning out the kitchen and then off to wander the grocery store. She is 2 and also allergic to cows milk. Tricky!!

  2. Suz I saw your post on our Facebook page and I made a few comments there.
    Let us know what else we can do to help!

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