How Long Will It Take To Make This Transition?

[lovebugs823]

Hi............

I am new to this site and have a couple of questions. My 4 year old son was diagnosed in August of 2007 with Type 1 Diabetes. We got through that and learned to deal with it and then in March or April ( I honestly don't remember which month we were in life is that hectic with diabetes) we got a call from his NP saying his bloodwork came back positive for Celiac Disease. I have no idea why it took so long to tell us that because he did the blood test in January. Children's ordered a biopsy to confirm the diagnosis and so we did that in May. They called that week and said his numbers were in the hundreds, there was no doubt at all he had celiac and there was basically no villi. So then they scheduled us in for the dietician so we could learn about all the safe foods. I honestly didn't understand Celiac quite yet......so I began to learn on my own and tried to find the right foods but we weren't 100% transitioned over because I really had no idea what I was looking for on labels. So we went to the dietician, they handed us the big fat book, took time to explain it to us but there really wasn't much more to say other than this is the list of ingredients you stay away from, find them on the labels and don't ever eat gluten again.

So now here I am almost a month into it and feel like I am failing miserably because I am just now finding out about all the hidden gluten, I am trying very hard to grasp it all, but one night I fed him the wrong macaroni, another day he took a bite of the baby's baby cereal that contained wheat.........just stuck the spoon right in his mouth and when I told him he couldn't do that he turned right back around and did it again. I also just found out that he can't have yogurt because it has modified food starch and he loves yogurt so I am really not sure what to get just yet. I think one I bought is safe................it said gluten free on it. My mom wanted to help so she bought me a toaster, I am really learning about the cross contamination but as a mom I am a bit freaked out because just tonight I had bought a box of rice squares cereal and for a snack he wanted to have a small bowl of rice squares so I said yes but let me double check the label because I am learning even more about the hidden gluten and it contained barley malt syrup or malt barly syrup............I can't remember which so I said no he couldn't have it..............and 4 of them fell on the counter and he popped them into his mouth before I even saw them sitting there. I am freaked out because they say it all can lead to intestinal cancer and my son keeps getting small bits of wheat into his mouth because his mommy can't get this label thing down. He was never a symptomatic child so he ate whatever he wanted and we never had an ounce of a problem which he might just have never known the difference. So with his numbers so high upon diagnosis is he at an even greater risk for intestinal cancer and how long will it take for me to understand all of this hidden gluten stuff. Does it seem to take a bit to get the hang of it.

Thanks.

[MELINE]

Please don' t panic. Since your ds had a scope and it is clear of cancer, and you have already started a gluten-free diet (even with some accidents at the beginning) I guess he will not have any problem (of course I am not a doctor). But just keep in mind that most of us were misdiagnosed for YEARS. I found out when I was 29, there is someone here who was misdiagnosed for 45 years. And we had no problem with cancer. So please don't panic. We all find it hard at the beginning to stay away from hidden gluten. I think that after 5 or 3 (I really don't remember) years of gluten-free then the risk for intestinal cancer is the same as the rest of the population. But this goes for adults. I guess (I only guess) that for children things are even more easy.

[Ursa Major]

It is hard for a child that young to understand why he can't eat the foods he sees lying around. It would be better if the baby's food would be gluten-free, too, so if he eats some of it, then it won't be a problem. The same goes for your other foods. Either keep them out of his reach entirely, or make your house gluten-free to keep him safe.

You know, he got the celiac disease from either you or your husband, since it is genetic. It is always advisable to have the whole family tested, to make sure there aren't others who have celiac disease. Sometimes people have no obvious symptoms, with completely atrophied villi. Many parents who went gluten-free for their kid's sake found that suddenly they felt a ton better!

Try to stick to mostly naturally gluten-free foods at the beginning, like meat, vegetables and fruit. That way you won't make mistakes, until you get the hang of it.

You have to make it a habit to ALWAYS read all labels BEFORE you put things into your shopping cart. If you are in doubt, don't buy it.

Also, if you cook your dinners gluten-free, then you can all eat the same food and you can't feed him the wrong food. Rice pasta tastes just as good as wheat pasta, and most people don't even notice the difference. In fact, some of my family (who are not gluten-free) prefer the rice pasta.

I refuse to cook anything that contains gluten, even for guests. Nobody knows the difference unless I tell them. Everybody loves my cakes and my gravy (thickened with light buckwheat flour) is amazing! I have even made gluten-free Black Forest Cake (the original German recipe which I've adapted), and my son, who has had my regular Black Forest Cake many times said that it was the best I've ever made.

None of the Kellogg's cereals are gluten-free, they all contain barley malt. You can get gluten-free rice crispy squares, though, I don't remember the brand.

[aikiducky]

You already got excellent advice, and I just wanted to add one thing. Someone on another celiac board once said that it takes at least a year to get used to the social aspect of the diet... because you need to go through every holiday at least once before you realize what the effect of the diet is. You know, Thanksgiving dinners, birthday parties, Halloween candies... Just wanted to add that for perspective. Just take it one day at a time and before you know it you'll be a pro!

Pauliina

[ravenwoodglass]

Please don' t panic. Since your ds had a scope and it is clear of cancer, and you have already started a gluten-free diet (even with some accidents at the beginning) I guess he will not have any problem (of course I am not a doctor). But just keep in mind that most of us were misdiagnosed for YEARS. I found out when I was 29, there is someone here who was misdiagnosed for 45 years. And we had no problem with cancer. So please don't panic. We all find it hard at the beginning to stay away from hidden gluten. I think that after 5 or 3 (I really don't remember) years of gluten-free then the risk for intestinal cancer is the same as the rest of the population. But this goes for adults. I guess (I only guess) that for children things are even more easy.

I am the one (or one of the ones) here that was undiagnosed for 45 years. Although I was very close to death by the time I was diagnosed I still did not yet have cancer. While it does happen it is not something that is going to help you to worry about. Please do not get too upset with yourself or your little one. He will be fine. You may want to consider making your home gluten free. There are multiple reasons but the most important one in my eyes is that chances are really good that that little one is not the only one who needs the diet in your home. You won't make the baby a celiac by restricting his gluten intake, only the genes do that, and it will help prevent your diagnosed child from grabbing a gluteny spoon. It takes a bit of time to ferret out all the hidden sources but you will succeed. You have come to a great place for info and support. Welcome and read, read, read. Feel free to vent and also to ask any question you need to.

[home-based-mom]

I just wanted to emphasize what has already been said that making your whole house gluten free is by far the easiest and safest thing to do.

Do read the labels in the store. But much safer and healthier is to shop around the edges where the fresh and frozen meat and produce are found. Much of the processed food you find in the center aisles have gluten in them.

There is a lot of info in this forum on how people keep gluten free homes and what to feed the kids, etc. Read, read, and read some more.

You may even find that once he has become totally gluten free, your son may even become less defiant!

[cyberprof]

Hi Lovebugs,

I agree that taking your family (or at least the kids) Gluten-free at home would be easier. I imagine it would make any 4 year old mad that the baby could have something when the other kid couldn't. My 15 y.o. is having terrible time watching friends and family eat wheat pizza, cake etc., and he's old enough to notice the symptoms when he gets gluten by accident.

And Ursa is right, try to only buy gluten-free foods so you get used to it and don't tempt your son.

Rice Chex in the new box is gluten-free, it says it in big letters on the front of the box. There are some other cereals (Dora Explorer Stars I believe) that are also gluten-free. There is also gluten-free baby food.

Another thing is that your baby may need to be gluten-free too and there is some evidence that going gluten-free can prevent the onset of Type I diabetes (it does not work for everyone of course). So there is a benefit to taking the whole family gluten-free. If you and your hubby are tested and are not celiac, you could eat gluten out of the house.

Another thing is that by taking the house gluten-free it reduces the stress on you and makes it "normal" for your son, so he won't think he is being singled out.

Good luck! And don't sweat the mistakes -everyone makes them and you'll be a pro soon!

~Laura

[ShayFL]

Since your son has diabetes, you need to be careful with processed gluten-free foods, they tend to be very high glycemic and will shoot the blood sugar right up. They lack fiber which is part of the problem.

I know you have your hands full with a 4 yo and a 9 mo baby, but if you can experiment with some high fiber bread baking, this would help. There are tons of recipes online. Choose brown rice over white. If you are going to use potatoes research has determined they are best eaten cold or with vinegar (like potato salad) for diabetics. Reduces the blood sugar spike.

Emphasize high fiber fruits for dessert. Nuts are great for diabetics and nut butters are much easier to digest (almond, hazelnut, etc.)

Make sure he stays hydrated which helps with blood sugar.

And he should be on a good gluten-free multi-vit (age appropriate).

We are here when you need us!

[MELINE]

I am the one (or one of the ones) here that was undiagnosed for 45 years.

I knew it was someone...I didnt' remember who.....

You are a good example of how people that are misdiagnosed for so many years, finally manage to cope with celiac.

Meline

[Ursa Major]

I knew it was someone...I didnt' remember who.....

You are a good example of how people that are misdiagnosed for so many years, finally manage to cope with celiac.

Meline

I was also undiagnosed for 49 years (I had obvious symptoms from the age of three, but I guess nobody thought of celiac disease). I finally diagnosed myself. Hooray for the Internet!