Child & Celiac Disease

I have only dealt with Celiac Disease for adults not kids but my favorite bulletin board for advice and information is http://www.celiac.com/gluten-free/. There are lots of books out there as well with kid friendly gluten free recipes. Googling Celiac or gluten free will bring you to lots of web pages, some better than others.

One suggestion is for any recipes or products you try you keep good notes and a list of what you did and did not like so you don't waste time and money trying them again. Once you find products you like you can often order them online in bulk cheaper than at the store.

The best gluten free pasta in my opionion is Tinkyada brown rice pasta. You can even get this at ACME now although the price at Whole Foods is better. Whole Foods has lots of gluten free products as well.

I have Celiacs. Sign up for the weekly email newsletter from glutenfree.com. You'll have to read labels every time you shop - things that are safe today, may not be tomorrow (and vice versa). Rumor has it that Duncan Hines (or Betty Crocker???) is coming out with a gluten free line July 2009, which will be exciting.

The trick with the diet is to stick to whole foods as much as possible. I wasn't clued in at all when I started, and substituted GF products for all my carbs - not realizing they're triple in carbs, and sometimes 8x higher in calorie. I gained 30lbs the first year and couldn't figure out why - now I know and follow better.

Amazon.com has great prices on GF foods, most with free delivery, and they offer additional 15% off if you sign up for a regular monthly delivery.

You may also want to get the GF restaurant guide: http://www.triumphdining.com/restaurantguide.aspx. Always tell your server about GF - even if they offer GF items - because they may still do silly things like put croutons in salad.

Finally, there are several blogs out there with good recipes. Elana's Pantry is one that I can think of right now.

Good luck!!!!!!

Hi, K.! I am so glad that your son is on the way to getting a diagnosis, and will be treated, difficult as it may be. I don't even know if I should say this; I certainly don't mean to be discouraging. Maybe I'm hoping it will make ME feel better to hear of someone else having a positive outcome. A VERY dear friend of mine actually died of Celiac's disease about a year ago, at the age of 33. Her family searched and searched for a diagnosis, and really didn't get it until it was too late and she was too weak to withstand emergency surgery for a bowel blockage. Wishing you all the best, as well as other readers with this disease. Your family is in my prayers. N.

There are 2 books out there that I use for my gluten and casein free child...they have info as well as great recipes. Special Diets for Special Kids I and II by Lisa Lewis PH.d. I wish you well on your journey.

Hi K.,

The good news is that there are more and more options out there.

I don't know where you live, but there is a bakery in Kennett Square, PA called Sweet Christine's. She is a gluten-free bakery, and she tries to make options that are kid-friendly. She has chocolate chip cookie kits where all you have to do is add egg and water, and the cookies are good! She makes bread, pies, muffins, bagels, cakes, etc. She also makes pizzas in individual sizes and sandwiches that kids can pack in their lunches that don't look different from other kid's foods. Even if you don't live close, I'm sure you can get her number from her website and order items. She developed this bakery because her daughter has celiac disease, and a portion of all of her proceeds goes to celiac disease research. (No, I don't work for Sweet Christine's, just found her products a Godsend)

I also got a book from my local library about cooking gluten-free, and it was very helpful. There are also special enzymes they can take 30 minutes before eating that will help him digest the gluten inside the stomach and help it pass through the intestines easier and reduce his discomfort when coming in contact with glutens.

I think you'll notice a great improvement in his overall health and attention. The reason my doctor tested my daughter was due to her ADHD and having stomach pain. She is a picky eater, too, but if certain foods made your stomach hurt, you might be picky, too! There is a significant link between ADHD and Celiac disease, according to my doctor.

Even if the endoscopy doesn't show anything conclusive, I'd recommend at least limiting his gluten. He could be gluten-sensitive, but not have the full blown disease.

We didn't find out about my daughter's problem until she was 12 or 13, and by that time, it was difficult to get her to cooperate with the diet change. If the problem is severe enough, he'll probably WANT to stay gluten-free, but if it is just mildly uncomfortable, he might not like the change much. It does make you say NO to alot of "regular" foods, but it is more healthy for him (and all of us, for that matter) if he steers clear. In fact, if the whole family goes gluten-free, everyone will feel better, have more energy, and probably lose weight! At least that is what happened in our family!

Good luck.
L.

While i know a few people with celiacs, I don't haven any personal experience to offer.
I'm sure if you google it, you'll get tons of sites. Not that you should trust all of them but they may help give you some ideas.
I know there are stores out there that offer many gluten free products, they probaby cost more but they can help you to keep things as normal as possible.
You also many be able to find recipies on sites like allrecipies.com etc that don't include gluten. I think there is one for peanut butter cookies that i remember seeing.
I'm sure if this is what he has that he'll feel so much better eating the right things. I would really play that up, how great it is to know what foods will make his tummy happy. Have him help you in the grocery store,and in the kitchen. My picky eater is more willing to try when he gets to help make it.
Also, I think you probably need to figure out how this effects the rest of the family. You don't want to find yourself in a postition of short order cook making everyone different meals, and you don't want to make your son feel singled out like he is missing something, nor do you want your other children to feel punished in any way. Just something to think about. I think it's probably best to adopt a relatively gluten free diet for the whole family, gradually if you can, but that's up to you and your husband.

I wish your family well. I know stuff like this is scary but knowing what's wrong allows you to fix it:)

My healthcare practitioner treats this all the time and I think she may have links on her website for you to check out, her website is www.holisticfamilyhealthcarepc.com.
Good luck!

Hi, K.,
No one in my family has Celiac, but my son was on the gluten-free diet for a couple of years to help with some of his Autism issues. The first couple of weeks is the hardest. But you'll soon realize that the biggest challenge is the COST of keeping a gluten-free diet, if you choose to buy GF products. You could always just totally cut out "carb" type foods (pasta, bread, etc) and eat fruits, veggies, meat and dairy and that would work just fine. We found it was just too difficult and unfair to cut out ALL my son's favorite foods (pizza, mac n cheese, other "kid" foods). So we found substitutes for them. It'll be a lot more expensive, but worth it when your child starts to feel better. You can find gluten-free substitutes for a lot of foods and after a while, you'll get so used to them you won't miss the "real" stuff. Whole Foods has entire sections devoted to "GF" foods and there are a bunch of mail order places online which specialize in GF. I'm not sure about Philly, but here in Denver (where we still live for the next month until we move there), there is a bakery/cafe which ONLY serves GF foods. They also carry frozen pizza crust, ravioli, breads, etc made with a proprietary blend of potato and tapioca flours. I was able to just go to there and buy the stuff, but I'm pretty sure they also do mail order (you can get the "flour" mix and use it to make breads, cakes, pancakes, waffles, pizza crust, etc). There's also a pasta brand called Tinkyada (get it at Whole Foods) and I gotta say, it's pretty good! So, yeah, it's a bit difficult to adjust to the diet, but once you get going, you get used to it and it's not bad at all. Our son doesn't need to be on the GF diet anymore, so we stopped, but if we ever get to the point where he needs to go back on, I'm not concerned anymore because it's totally doable with a bit of effort and cost. I hope your son doesn't have Celiac, but if he does, don't worry, you'll do just fine! Good luck!

There's a website called livingwithout.com It will give you a lot of information. My mother-in-law has celiac. She buys microwaveable meals called "Amys" you can find them at most Grocery stores make sure you get the ones that say glueten free.

I was diagnosed with this after having my 3rd child 2 years ago. It can be very debilitating. I literally slept in the bathroom next to the toilet because I couldn't make it there from the bedroom. The uncontrollable bloating and gas is the worse though. I followed a strict diet eating lots of fruit, veggies and meat. No bread, cake, etc. and mine is now not as severe as it was at onset. You will learn more every day about foods that may have gluten such as some salad dressings, soy sauces (not all) and gummy-bear type candy (which I used to sneak from the kids now and then). Once you get used to it, it really isn't bad. You just become a smarter eater that is all. Good luck!

K. - I just received a flyer in the mail today from Jefferson Regional Hospital near Century III Mall. They are offering free classes on Celiac diseases.

Best of luck!

my sister has a gluten allergy as well. there are tons of products out there that are great. even cakes for birthday's. i know that most grocery stores carry items in the natural or organic section. Giant foodstores have a section. i know she used a wesite, but don't know it right now, to find recipes and items and where to purchase them. you can also call before you go out to eat to see if they have any gluten free foods on the menu. i know wendy's has a lot of them. every case has a different severity and symptoms so you will have to see how your case reacts. my sister has been intolerant since we were young and manages very well. good luck!

Hi K., Although none of my girls has Celiac disease one of my daughter's best friends does. As well as one of my own friends. I know it is a challenging problem but one that can be lived with. My daughter's friend can eat things like Lay's potatoe chips, fruity pebbles cereal, home made rice pudding (i have a great crock pot recipe that she loves!), home made breads (her mom makes her a loaf of gluten-free every week), as well as cakes, and even pizza! When we have a sleep-over and it's for a birthday her mom will make her a small cake of her own to bring & enjoy. She does the same thing if we are going to have pizza...all I have to do is let her know a couple of days before hand. She also checks the lables of everything we may be offering the girls...it was kinda weird for me the first time she asked me, but once she explained it was really no biggy! My daughter even found a peanut butter cookie reciepe with no flour so that her friend could have cookies when she comes over! You have to be carefull because companies change their reciepes so you have to read lables all the time (which drives my friend with celiac crazy as an adult.). Believe me once you get your son on the diet you will see such an improvement in him that you will be glad to do anything to keep his diet (that's what both people I know with celiac told me.) I'd be more than happy to send you the two recipies I have if you would like to try them just send me a message! Best wishes.