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Mysterious Illness Strikes Kids

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This morning, Elisabeth Hasselbeck went on GMA to discuss Celiac Disease. It is an autoimmune disorder: your body creates antibodies to gluten (a protein found in wheat and related grains) and ends up attacking its own intestines.

mother visits her young child as she lays recovering in the hospital

Claire LaZebnik: The child of a good friend was diagnosed with Celiac Disease a few weeks ago. Celiac Disease is an autoimmune disorder: your body creates antibodies to gluten (a protein found in wheat and related grains) and ends up attacking its own intestines. It's completely curable with a gluten-free diet, but until it's correctly diagnosed, it can make the patient extremely ill. My friend with the newly-diagnosed son was overwhelmed by all she needed to know to keep him healthy. "Don't worry," I soothed her. "You have me."

My own son was diagnosed with CD over ten years ago, after he had stopped growing for two years and showed a strange tendency to vomit up entire meals. My doctor assured me we were lucky because it's completely curable by diet, and I tried to feel lucky, but I remember standing in the supermarket, literally crying because I didn't know what I could safely buy anymore. Gluten lurks in unexpected places, like soy sauce, barley malt (found in almost every major cereal), and seasoning mixes. Manufacturers sometimes "dust" foods with flour to keep them from sticking. I had to learn to read every ingredient on every single thing I bought.

The good news? Food labeling has improved dramatically over the last decade, more and more companies are labeling products "gluten-free," and restaurants have become much more sensitive to the issue.

I've developed many tricks, resources, and recipes to keep my son well-fed and well-nourished, and now I get to pass all my acquired knowledge on to a good friend. I've already taught her how to mix her own flour, based on a formula by "The Gluten-Free Gourmet" Bette Hagman (equal parts tapioca flour, rice flour, and cornstarch, with a small amount of potato flour). With a canister of this flour on my counter, I can bake anything. 
Well, almost anything -- you start to learn which recipes do and don't work with gluten-free cooking. You want recipes with a lower proportion of flour to other ingredients, so something like a carrot cake is good, but a simple pound cake may not work. This year I made Irish Soda Bread for St. Patrick's Day, using a traditional recipe, this GF flour mix, and a spoonful of xanthan gum to hold it all together, and it came out great (the large amount of sour cream in the recipe didn't hurt). 

My secret baking trick? Ordering really good GF cake mixes online (trial and error taught me which brands are best) and then using my very worn copy of Anne Byrn's The Cake Mix Doctor to make GF bundt cakes, bar cookies, cupcakes, and layer cakes that are indistinguishable from wheat-based ones. Thank you, Anne!

At restaurants, my son can order for himself now (he's fifteen), but for years we did it for him, double-checking to make sure nothing was marinated in soy sauce or sprinkled with flour before being braised. I can't tell you how often the carefully chosen plate of food has arrived ... topped by a slice of bread that the chef threw on automatically. 

Our hearts sink, we sigh, and ask to have a fresh plate of food without the bread -- and, no, it's not enough to simply remove the bread and re-serve. (Even a crumb of gluten can damage the intestines of someone with CD.)

We recently traveled through Europe, where every morning the rest of the family would gorge themselves on croissants and crusty rolls, while Johnny would content himself with a yogurt, an egg, or some fruit. 

At dinner, though, we'd make sure he'd have plenty to eat, once even going to an all-gluten-free restaurant (my husband had tracked it down online before we left). We went to another gourmet restaurant where we showed the waiter a card with Johnny's dietary restrictions written out in French (something you can also get online). The chef kindly made some substitutions, and Johnny had duck for the first time and said it was one of the best meals of his life!

The most important strategy of all in dealing with Celiac Disease? Having a good attitude. At every school function and party that my son goes to, the food is almost entirely made of things he can't eat -- pizza, subs, cookies, chicken nuggets, etc. We realized early on -- he, his father, and I -- that we could all moan and complain about how insensitive people were and how mean it was for them to serve things Johnny couldn't eat, OR we could just call ahead to find out what they were serving, pack up some separate but equal food for him, and let him enjoy the celebration. 

Sure, there have been times when we've forgotten his food and my son's gone through an evening eating nothing but potato chips and ice cream, but you know what? He survives. It's no big deal. He's healthy, happy, and full of energy. The doctor was right: we're lucky.

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26 comments so far | Post a comment now
ashley May 3, 2009, 9:43 AM

Great article!! My good friend has a son who was recently put on a gluten free diet. Not because of CD but because he is autistic and this new diet is supposed to help. He is 9 and doesn’t understand why he can’t have certain things. SO when he comes over we have to hide the cookies and such. He eats alot of rice with ground beef and melted cheese and she has learned to make a gluten free pizza that is actually pretty good and some cookies that aren’t so good. He is a very picky eater so he won’t eat most fresh fruits and veggies or eggs. It is very difficult for her and very expensive. Hopefully over time he will understand and start to like more foods.

Kristen May 3, 2009, 11:46 AM

We have done a gluten free diet in our house many times to figure out what our girls are allergic too. I actually think it was quiet easy. Pamela’s baking mix is perfect for just about any baked goods and I LOVE the gluten free bread crumbs we buy, I even make our own chicken nuggets with them and my girls can’t tell the difference.
It’s funny because when we figured out that gluten was NOT the problem for us we decided to continue using almost all of the foods that we had found to be gluten free because they were SO GOOD:)

AutistMom May 3, 2009, 2:20 PM

@Ashley, gluten free diet is only necessary for people with Celiac Disease. There is no reason to put a child with autism on a gluten free diet unless they also have celiac disease. Let the kid eat the foods he likes. A balanced diet is the best thing for any child.

Kristen May 3, 2009, 2:43 PM

Autisticmom, you are WAY out of line. I too have a child with autism and though the gluten free diet did not help our child I have met parents and watched the transformation that has occured with there children who did do a gluten free diet and those children were even tested for celiac and the tests came back negative but the results for the kids were great. I don’t think that just because something didn’t work for you doesn’t mean it won’t work for others. Keep your negative comments away, it’s difficult enough to have a child with autism let alone parents who think they know it all.

Johnny May 3, 2009, 5:09 PM

Hi…I’m not sure if I should be commenting (I’m the child mentioned in the article, but this is still a mom site). A few comments: first, to any mom who has a child with celiac, the stock photo is hilarious. Second, in response to the other comments, my brother has autism and is on a celiac diet and refuses to let himself eat a lot of flour because he thinks it makes him feel bad. I agree with Kristen; different things work for different people. Those are my comments. Thanks, and great article, MOM!

Liz Abbe May 3, 2009, 6:04 PM

Great article, Claire! And what you said about attitude is actually true about almost everything in life. You can try to find the best ways to make things work, or you can feel mad and sorry for yourself and never get to move on. My husband’s grandmother, who had a very difficult life, always said that she felt you needed the “2 A’s” to be able to get on with your life: acceptance and attitude. She lived to 95 with that and it worked out pretty well for her, despite grim circumstances at times.

Johnny, so true about the stock photo that was at the top of the article! I guess I tried to imagine that it was an example of a child coming out of anesthesia after the endoscopy? It didn’t really work, but it made me chuckle! Anyway, thanks for being a great role model for Jake. He’s really looking forward to seeing you soon, for some gluten free meals!

Good & Healthy Foods May 3, 2009, 6:26 PM

Hi, we make Black Horse cooking sauces and syrups- all are gluten free and very delicious-you can use them to grill, marinate, stirfry, dip etc-all kinds for meat, poultry, seafood, fish, tofu, vegs. They allow the whole family to enjoy a gluten free meal. Kids really love the Apricot and Raspberry Mustard. The Raspberry & Marionberry syrups are great on pancakes, waffles or ice cream!

dizzymum May 3, 2009, 7:59 PM

Excellent article. I agree the key is to be cool about all this - you can’t change it, so no point in complaining. My son has a life-threatening allergy to nuts and tree nuts. I too have to study every label and ingredient. But you know, that’s life, and he accepts there are some things he can eat, and some things he can’t. He remembers the last anaphylactic reaction clearly and never wants to experience that again. It’s tough with some family and friends though, who don’t understand. A relative served chocolate at a party, with cashew nuts in it. His grandparents gave him an Easter Egg, without checking the label. There were traces of nuts in it. Even though we tell them over and over, they forget! Kids still take nutella and peanut butter sandwiches to school. You can’t blame them.
I’ve told my son everyone has something they have to deal with it, and he’s cool with it.
Sounds like you are doing great with your kid!

truthbetold99 May 3, 2009, 8:23 PM

Thank you for your can-do attitude. It’s so refreshing to hear about someone who rolled up her sleeves and simply dealt with the problem.

Jenny May 3, 2009, 9:52 PM

I have Celiac Disease and while I think your article is great and informative you really should reevaluate the line about it being completely curable with a gluten free diet. This is not a cure, it is a treatment, the disease is still there it has not been cured. Also there are people with Celiac Disease who do not respond to a gluten free diet or they stop responding to it, it is called refractory sprue or refractory celiac disease.

Anna May 3, 2009, 10:25 PM

Great article. my family is on a semi- gluten free diet (semi as in only at home)none of us have celiac but my mom insists that we do not eat gluten at home. We do not react to gluten in any way, and my brother and I both eat it at school. I am just wondering if anyone has seen any benefits from abstaining from gluten, even though you have no disease. I also wonder if anyone has any ideas on improving bread recipies….the ones we eat are distgusting! hehe.. thanks!

Jenny May 3, 2009, 11:06 PM

Sherry Lynn’s Gluten Free Bakery in NY. They ship, the bread is amazing

Krista Stevens May 4, 2009, 9:28 AM

My son was diagnosed at 8months of age. He’s also allergic to dairy and nuts. So I have that also to watch out for. Was extremely hard in the beginning, having no clue about food allergies and never really reading ingredients. Now he’s 5 and I’ve adapted to what is required on my part. It’s frustrating going to parties and him not being able to eat all the food there. Luckily for me, he’s a champ! Doesn’t bother him in the least. We’ve been able to substitute a lot of foods to make the things I didn’t want him to miss out on. Like pizza and grilled cheese sandwiches. He’s happy, so I’m happy.

Claire May 4, 2009, 10:55 AM

Just wanted to respond to some of the posts. Jenny, you’re absolutely right and I mis-stated it when I said it’s “curable” with the diet. I should have said, “The symptoms are completely alleviated by the diet but the illness is never cured and the patient has to remain on the diet his entire life.” Thank you for pointing that out. I didn’t realize there are people whose symptoms aren’t relieved by the diet—I hadn’t heard that before.

It’s great to hear of so many parents and kids with wonderful attitudes toward their various restricted diets. And one last note about autism: it may be worth trying the diet—a lot of people swear by it—but always continue to help your child with the right kind of behavioral interventions. Those are crucial. Thanks for writing!

rugbymom May 4, 2009, 11:31 AM

Thank you for educating me! I am very blessed b/c my children (so far) have no food or other allergies. this is good to know, esp. when waiting tables! There are a lot of diet restrictions that come up and people get frustrated with their server if they don’t know all the details about what makes up their food. Also, as a Mom having other children over, I will now consider this and make sure there are always healthy alternatives to pizza & Subs!

jenny May 4, 2009, 2:07 PM

Claire don’t give up on the things that you may right now think cannot be made gluten free such as pound cake. I personally don’t like GF flour mixes because with gluten free baking I don’t believe there is a one size fits all flour. Different recipes need different things. Read up on the different flours if you have time, learn how they react. You can make some fantastic things! I just wrote a recipe for orange creamsicle cupcakes thats got non celiacs requesting the recipe.

Claire May 4, 2009, 3:28 PM

I won’t give up! It’s more a question of quickly glancing at a recipe and thinking, “Hmm, will this be easy to adapt or not?” Your cupcakes sound heavenly—how could I track the recipe down? My son would love them. My kids are a little picky about some of the flours—they don’t like anything that has its own taste, if you know what I mean.

Jenny May 4, 2009, 3:54 PM

Actually I’m working on writing a cookbook right now. I know what you mean about flours that have their own taste…I can’t take Tapioca flour, to me it has a really Earthy aftertaste. Wish I could get my email address to you without posting it on here.

Claire May 4, 2009, 4:02 PM

You could contact me through my website … So can anyone else who’s interested!

Susanne May 4, 2009, 8:09 PM

Well, if one is gluten sensitive- they r not Celaic! They can develope Celiac desease if ignoring the fact of sensitivity to gluten. The symptoms and the treatment in both cases are the exact same. Damage can take years to develope, so simply because they had a negative result in the colonoscopy , doesn’t mean they r not celiac or wouldn’t profit from a glutenfree diet. Gluten sensitivity falls in to the category of foodallergies/ sensitivitys and does NOT produce the damage in the intestines, while it does however produce many similar symptoms though. Celiacs do NOT have a foodallergy, my duaghter is a fullblown Celiac at the age of almost 3 and is a bit allergic to gras, some animals and so on, but low and behold not one bit to Wheat.

Everyone is entitled to their opinion, the only comment that autistMom made that kind of bothered me was that the glutenfree diet is not a well balanced diet, sice you camn’t eat everything! That is NOT true! Most celiacs eat way healthier than any one else, rice, potatoes, veggies, fruits, joghurt and so on. Meals made with cornstarch instead of wheatstarch are not any less nutricious for example, if anything then more than most toher grains. Most grains now a days are so overprocessed, even the full wheat ones, that except for fiber, not much else really is left!

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