Begin at the Beginning

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It's always best to begin at the beginning.
  Glenda, the Good Witch of the North, from The Wizard of Oz.

In my last post I shared the story of Andy’s entrance to the world of Celiac Disease and a fact sheet about Celiac Disease in Down syndrome. Now it’s time to talk about the treatment: a gluten-free diet.

There have been times in my life as Andy’s mother that the irony of a situation is bigger than the problem itself. This was one of them. The treatment for celiac disease is a gluten-free diet. Since my early days as a dietitian, this was in my top three dreaded diet instructions. I wasn’t looking forward to this journey. 

As you read this, keep in mind, this information is about people with Down syndrome who have Celiac disease.  

Gluten is found in wheat, barley, and rye. Until recently, it was believed oats were also a culprit. Turns out oats are gluten free, if  they are grown and milled following specific guidelines. Always use certified gluten free oats.

Gluten seems to be everywhere at first – until you learn what to look for and where and how to shop. The truth is, if you’re new to this, you have more urgent things to think about, such as, “What will we eat tonight?”

My approach is to recognize it will take some time to learn how to eat gluten-free and break it into easy steps.


Step One: Getting Started

This is a very short-sighted plan. Not one to use for more than a week. But it does give you that quick start. The foods are likely not ones you will use on a regular basis. They are,  however, easy-to-use. The steps are ways to be gluten-free quick. Keep that in mind.

  • Go to the Gluten Intolerance Group website. Print the basic information about the gluten-free diet: ( I found a membership very helpful.
  • On that same web site, print the Quick Start Diet Guide for Celiac Disease. (
  • Make a list of the foods you know your child absolutely cannot do with out. The survival foods.
  • If you have these in the house, put a package on the counter and begin comparing the ingredients with the lists of foods and ingredients with gluten. Put aside the gluten-free foods. Get rid of the foods your child loves, but contain gluten. It’s easiest to remove things from the house at first.
  • Create a menu for the next three days based on what you just learned about what your child eats. If foods are very limited, make a list of foods your child will eat that you can use as calorie fillers such as applesauce, popcorn, or even corn chips.
  • Start a notebook to keep lists of the new foods you will discover and where you bought them.
  • Set aside a shelf in the refrigerator and the pantry specifically for food your child can eat. Remind everyone not to eat these foods for now. They are for the person who has celiac disease.
  • Tip: Find a store that carries Udi’s Bread. Most Whole Foods stores carry it. Pick up a loaf of whatever “color” of bread you’ve been using (white or brown). They also make good hamburger buns and a good quick pizza crust.
  • While you’re at that store, look to see if they carry Living Without Magazine.  It’s one of the best for recipes, ads, and has a handy quick start list in the back.

Once you have a three-day menu planned, you can start researching the many foods available for people eating a gluten-free diet that will meet your family’s needs.


                   Gluten-Free-Depositphotos 6592983 XXL                                                                                                                                                                             
For these first three days, do not worry about perfect nutrition. The most important thing you can do for your child’s health is focus on eliminating the gluten your child eats.

Even if he’s eating a huge bowl of applesauce at every meal or more chips than you like to see, don’t worry.

Continuing to eat gluten is worse for your child in this moment. Healing his gut is the first goal.


Go on a Shopping Expedition.

Your goal is discover what each store has in stock that fits your needs. Take your notebook and write down what you learn. Stop at the food manager’s desk and ask if they have a list of gluten-free foods available – this is a very helpful thing to do. More and more stores have a list available. Some stores are better than others, but many are increasing the number of gluten-free foods they carry. And not all gluten-free foods  are specialty items. Some grocery chains are more interested in carrying gluten-free foods such as Whole Foods Markets, Wild Oats, and Trader Joes. Look for Amy’s Frozen Foods. The Amy’s frozen food line has a number of good dishes without gluten in them, including cheese pizza, spinach and cheese pizza, macaroni and cheese, burritos, baked ziti, and more. Entrées without gluten are clearly and proudly marked on the front for consumers.

One of the mysteries you will need to solve in your local stores is whether the specialty foods are mixed in with similar items (for example, rice pasta on the shelf next to semolina pasta) or if they are in a special are of the store such as the “nutrition section.”  Make a list of the foods you find in the different stores. It gets confusing.

When we started on this journey being gluten free was not yet the trend it is today. I literally kept a small notebook I could stash in my purse with reminders of what things I could buy at what store. I shopped four different stores just to get the foods we needed for home and school. My favorite was a not-so-local market that is completely gluten free, Lingonberries Market. Hank, the owner, would find all the really cool, often local, bakers and products. It always felt like Christmas when I visited Hank.

Shop the Internet

If you’re overwhelmed in the store, never fear. There’s always internet shopping! The following are a few of my favorites:

  • §“Joan Recommends.”  This is actually an Amazon affiliate store. On the right you will find a link to gluten-free foods. I “collect” products that are available on Amazon that our family likes. It’s not about the “affiliate fee.” It is the easiest way to gather those links for you so you can find things.
  • §Kinnikinnick Foods. (the worst part is the spelling!)
  • §The Gluten-Free Pantry.
  • §Gluten Solutions.
  • §Bob’s Red Mill.
  • §Tom Sawyer Gluten Free Flour.
  • § . This is a really fun site. They sell individual packets of a wide range of products. However, they also carry gluten-free individual packets of tandori soy sauce, and other gluten free items. Just search “gluten free.” These individual serving packets are good to have when packing lunches.

A Gluten-Free Home

juggling vegetables Depositphotos 9821717 LFamilies and even experts disagree on whether or not the entire family should eat gluten-free when one member has celiac disease. It is a decision on you can make. If you choose not to have a gluten-free home, you will need to purchase kitchen equipment solely for the person who is eating gluten-free. For example, a separate toaster, frying pan, or grill. Cross-contamination is an issue to take seriously.

We have created a generally gluten-free home. This was easier for us because our older son had left for college when we started the diet. We have found foods that we like and little has changed, except baking our weekly loaf of challah, one of Andy’s favorite activities. In the long run, this has been an easy way for us to ensure Andy is eating gluten free.

Remember, you’re just getting started. Resist as you might – and I did – it’s a good idea to work with a menu for a while. It actually became comforting to me to know that most of what we eat is gluten free! Meat, legumes, vegetables, fruits, milk, cheese. All gluten free before we alter them. The easiest thing to do is to make those menus pretty plain for a bit. Add in new adventures when you’re ready for them. Have a tasting party! YOU can keep track of the foods you try in My Tasting Journal!  

Truth be told, I sort of like the adventure of new foods these days. I am notorious for bringing home foods from a new bakery or product line I find just to try them. I love going to the GIT Gluten Free Food Fair once a year. The local group just had one last week. I found the greatest hand-made, gluten-free frozen pies. Check her out at  I had the closest thing to chicken pot pie that I’ve had since Andy was diagnosed with Celiac disease….and it was heaven.

This is by no means comprehensive. It’s meant to give anyone who is new to Celiac disease a method to get started with the treatment. 


Happy Exploring!


joan sig


 Case, S. The Gluten-Free Diet: A Comprehensive Resource Guide. Case Nutrition Consulting, 2008.

 McGuire, D. Chicoine, B. Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges. Woodbine House, 2006.

 Medlen, J. The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles. Phronesis Publishing, 2006.

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