Sorry, I couldn’t help myself. I thought it might be time to think about some of the survival skills your child – with or without Down syndrome – may need to develop if Celiac disease is in the picture.
One of my favorite learning experiences in the last 10 years came from a young lady with Down syndrome who has Celiac disease, before the big gluten-free product boom, and just before Andy (my son with Down syndrome) was diagnosed with Celiac. She lives in Portland, Maine and my role was to help set up the kitchens and support techniques for students in a post-secondary program that would open that fall. This gal has been following a gluten-free diet for some time. Her Mom had an exhaustive notebook filled with information about products, stores, and more. Her Mom sent us to the store so she could show me the foods she likes to have on hand. It was amazing. I learned more about reading labels
and finding gluten-free specialty products from this young woman in one hour than I have learned anywhere else.
My point? It is possible for your child, with or without Down syndrome, to do this! The challenge is the same as it is for everyone: temptation and peer pressure. We’ll talk about that later.
How did this young woman develop these skills? With education. Keep your child’s learning style in mind and begin to teach them the words to look for. The good news is that gluten-free products are more common now. This means you can begin by pointing out the words, “Gluten Free” on labels and packaging. For example, when looking at a box of two different pizzas, which box says “Gluten Free”? That will go a long way.
Survival foods, however, don’t come in a box. For me, these are the foods that one can count on without reading a label. Knowing what will always be safe will make it easier for your child to navigate an unexpected situation. What are known safe foods? Some ideas: fresh fruits and vegetables (though not dips!), meats that are not breaded or marinated, milk, rice, plain yogurt (the flavoring is the culprit for concern), and most cheeses. You can do a lot with that list. Think through your child’s favorite foods from those categories to create a feeling that there’s always something “safe” to eat.
If you have been doing this a while, what did you do, or are you doing, to teach your child about their gluten-free lifestyle? Share your ideas in the comment section or on my Facebook page. Sharing is how we all learn! There's no one way to do this.
Remember, this is the Survivor! version of gluten-free. We all need survival skills sometimes!
Having Celiac disease in the family and adding gluten-free living to your home is no small task. Finding resources you like and trust is helpful, especially in the first year. Even dietitians need a resource to turn to sometimes.
I’ve found that everyone likes different things in a resource. Some want an exhaustive resource with everything from medical information to recipes. Others are happy with a collection of tools including things they can keep in their purse, pocket, or smartphone. And then there are those of us who want it all.
Gluten-free living is so trendy right now, though, a new book, app, or blog pops up every day. The best tip I can offer you is some guidance on how to choose.
Choose a reliable resource. Registered Dietitians, also known as Registered Dietitian Nutritionists, are the best source of well-rounded nutrition information. A number of good resources have been written by Dietitians. In fact, all of my go-to resources about Celiac disease include a dietitian as an author.
Check out the endorsements. Good people run in the same circles. It’s not a fool-proof way of choosing, but it’s one factor.
Do you understand it? For a resource to be useful to you, it needs to be easy to understand. We all learn differently, so choose a resource that speaks to you rather than “the most scientific.” A good medical professional can explain things in an easy-to-understand and easy-to-use manner. That’s what you want.
Don’t spend a lot. There’s no need to spend a fortune on one resource these days. Save your money for tasting foods and trying new recipes.
With all that in mind, here are four of my favorites from my bookshelf. I’ll cover other media in another TTT.
Gluten-Free Diet: A Comprehensive Resource Guide by Shelley Case, BSc, RD. (2010)
This book is truly a comprehensive resource for information about Celiac disease as well as gluten free foods for cooking and prepared foods to purchase. Shelley updates her book often, so it’s definitely worth your money to purchase the latest copy. The book is available on Amazon.com and from her website.
Gluten-Free, Hassle Free: A Simple, Sane, Dietitian-Approved Program for Eating Your Way Back to Health by Marlisa Brown, RD, CDE. (2010)
I met Marlisa at an exhibit for members of the Academy of Nutrition and Dietetics. We had a good conversation. Her book is what it says a program for going gluten-free. In her book she shares up-to-date information about Celiac disease, a number of recipes, and Gluten-Free Meal Cards to share with the restaurant chef in a number of languages. This can be especially useful if you’re traveling!
Let’s Eat Out! Your Passport to Living Gluten and Allergy Free by Kim Koeller and Robert La France. (2011)
This is another resource that keeps changing. What I love about it is that the focus is on getting people out and about and traveling. I ran across them when they were first publishing their book and booklets. They make great pocket guides you can keep handy to guide you through food choices in various countries and cuisines. In fact, they’ve taken that concept so far, I can’t begin to share all the goodies they have created. So visit their website: http://glutenfreepassport.com/lets-eat-out-paperbacks/lets-eat-out/ to learn more.
You can also follow the resource I like in my Amazon Store, linked to my website. (I created the store not to drive income, but as a place to gather the tools and resources I enjoy using.) I know what you’re thinking. What about cookbooks and recipes?! Be patient. Those will come in another tip! For now, find your “go to guide” for when you have questions.
What books are you finding useful? Share your good finds in the comments section or on my FaceBook page!
When a person is first diagnosed with Celiac disease, some damage has been done to the gut that effects how well nutrients are absorbed from foods. How much varies from person to person, depending on how long Celiac has been active and not diagnosed or treated. Generally, the gut tends to begin healing in the first couple of weeks after starting a gluten-free diet.
That certainly was true for us! Andy went from having what we called, “life-limiting diarrhea” to being just fine in a matter of days. What’s hard to remember is that just because there’s no diarrhea, bloating, gas, or other symptoms of Celiac, doesn’t mean the healing is complete. It’s only just begun!
It’s usually hard to know exactly how long a person has had undiagnosed Celiac disease. Children are usually diagnosed more quickly than adults. The average time from experiencing symptoms to diagnosis for adults is seven years!
Think about it. During that time, the person with undiagnosed Celiac disease is not absorbing all the good nutrients from the foods they eat – regardless of symptoms. In other words, having diarrhea or loose stools does not necessarily mean that person is at a higher risk for not getting nutrition from food than those who have dermatitis or bloating.
Implementing a gluten-free diet is the first step to healing the gut so that nutrients can be fully absorbed. It can take weeks or months for this healing to be complete. Remember, for someone with Celiac disease, gluten-free is not an option. It is the treatment and the only road to quality lives with quality health.
Rather than try to include the common nutrient deficiencies in one post, I will touch on which nutrients to focus on throughout this Tip-a-Day series. If you’d like to receive them daily in your email, you can sign up here (keep in mind, they begin with Tip #1!)
Ok, not quite as catchy as “Put a Bird on It…” I tried. Everyone handles gluten free living differently. For some families, everyone goes gluten free. In others, only those who need to eat gluten-free foods. Andy, our son with Down syndrome, was diagnosed with Celiac disease around the time his older brother left for college. My husband and I decided it would be easier to simply be 90% gluten free. We have a few non-gluten free items in the house. They’re kept separate and typically aren’t things that Andy has any interest in.
This works well when it’s just the three of us. When someone comes to stay with us, it can get a little confusing. Suddenly I need to be aware of what’s happening at the toaster, whose eating what, and whether or not Andy might find it tempting. Thankfully these moments do not happen very often.
Many households, however, balance both gluten free and non-gluten free foods and cooking in their kitchen. It can be confusing and frustrating. There are many ways to organize a kitchen so that the gluten-free toaster, pots, pans, sponges, and cooking utensils are kept separately. Sharpies were made for labeling, so that can take care of the food items. Most of the time.
I ran across a fun way to help organize things. Kelly LeDonni is the founder of a company that sells gluten-free labels. Just imagine, a drawer full of stickers, labels, and even toothpick signs to help keep things from becoming cross-contaminated, even when entertaining!
These labels serve another purpose: vlsual tools for children, teens, and adults with Down syndrome and related disabilities. It’s a great way to say, “These are your foods. They will keep your stomach healthy. Let’s put these labels or stickers on them so your brother, sister, father, room-mate, won’t eat them. Even if they want them, they need to leave them alone. They are for you.” It also gives your child a clear idea of what they can put in their lunch, have for a snack, and so on with out having to ask. Independence! It's a great teaching tool.
So take a peek at her website, GlutenFreeLabels.com to get some ideas of how you can help everyone prevent cross-contamination while also putting the control of “what’s mine” in your child’s hands.
Do you have a way to make it easy for your cihild to find safe foods? Share it on my Facebook Page.
(Just in case you’re wondering, I receive nothing in return for sharing the products we use in our home. These are unsolicited recommendations. I love good tools!)