Major Gluten Set Back In 5 Year Old.

[I hate gluten]

I have a son with major behavior problems when eats gluten. We have been very strict with a gluten free diet. On Valentines day he glutend himself on cookies. (5 years old) He got them with some valentines and did not show them to me. We have had major set backs. The first few days his fine motor skills suffered tremendously and his behavior started up ( no attention span, does not listen or gets distracted when talking to). then on the third I noticed his pot belly. I am on day six and am my wits end. Even before he was gluten free he was not this bad. Its hard dealing with and watching. I know it is the food, not him but it is so hard not to get frustrated. He is only 5. I am affraid for him. He starts K next year and I do not want him labled if for some reason he gets glutend. It gets hard. I know he just wanted to be like the other kids, this was his first holiday gluten free, but the end result is horrible if he eats it. I feel like a bad mom when I get upset, but it is to the point where you can ask only one thing at a time. ( example- get your shoes, he will go by his shoes and if there is a toy he will play with it, so I have to remind him, then he will get his shoes then I have to tell him to bring them to me or put them on.) With out gluten he will go get his shoes bring them to me and put them on or wait for me to. Its like he is stuck in a two year olds brain when he is on the stuff. I just can not wait for it to be worn off. It took me 6 days the last time I got glutend, so it may take longer for him. My husband is in awe at the major difference from the gluten. I guess it just proved to him that there was a problem. I know he still had questions when the test came back neg, but he is still a great support. Thanks for listening to my rant. Im sure this to in time will pass, although the sooner the better.

[MySuicidalTurtle]

I hope your little one feels better soon and starts acting himself. Just hang in there and it will pass!

[CMG]

Sounds very much like my 5 year old daughter. Her celiac panel was negative a year and a half ago, and we opted not to do the biopsy because she was so young. We kept her on a strictly gluten free diet for about a year and she thrived. I then decided that, since the celiac panel was negative, I would let her "cheat" occasionally - like at birthday parties, so she wouldn't feel so different. We never saw a severe reaction to a single gutening, but a slow, steady decline in behavior and complaints about aches and pains. We're now going back to the strict diet.

The good news is I have talked with her about her behavior and about her complaints - we have talked about it from day one - and I asked her whether she thinks all these symptoms and behaviors were better when she was strictly gluten free. She totally gets it that there's a link. I have talked with her teacher, who is arranging to have some home baked gluten free treats that I provide stored in a freezer at the school so she can get one out whenever there is special food in the classroom. At her last school, her teacher notified me whenever there was a birthday or other celebration so I could send something in with her that day. The school thing is worrisome, but workable if you have a cooperative teacher. Also, her teacher has assured me that so many kids have allergies that she didn't think my daughter would feel different from other kids.

Good luck, and I hope your son feels better soon!

[I hate gluten]

Today was a very good day. We did not go in public, but I think he would have been good. Usually gets distacted at stores. I think another day and I will have my gluten free son back. I feel so bad for him, I know it has to be miserable. i also hope he learned his lesson. Doubt it but, who didnt want to fit in at school when they were young.

[dilettantesteph]

I guess it is a good thing that when my son was diagnosed at 10 he was super sick and throwing up 10 times a day. He would never eat gluten intentionally. My suggestion is to have plenty of gluten free treats around so that he is less likely to cheat. We just ordered some donuts from Kinnikinnick's and they are so good. (But expensive). With effort, you can make food just as good or better than wheat containing. Using whole grains at home is healthier, tastier, and often more gluten free than buying. My son also regresses when glutened. For the school lunch room my son's doctor suggested he have his own lunch tray to avoid crumbs left on the tables. Luigi's real italian ice is gluten free and what my son brought in for his summer birthday. All the best.

[Darn210]

I'm glad your little guy seems to be doing better.

I just wanted to make a few comments on the school stuff. At the beginning of the year, I send in an "Emergency Snack Pack" that my daughter's teacher keeps in a cabinet somewhere. It contains stuff like the small packages of skittles, tootsie pops, smarties, lunch-size bags of chips or fritos . . . that sort of thing. Then if something ever comes into the classroom, she's got a safe option (that also is desirable by any of the other kids there). Birthday treats are not allowed in the classroom, but they do have cookies at the Christmas party and Valentine Party and I send in a special gluten free version for her . . . I try to make it look better than what they hand out. For instance, I know that on Valentines the class gets a sugar cookie . . . plain, no sprinkles, nothing . . . I send hers in iced and decorated . . . and I'm happy to report that the other kids don't think it's fair . . . *snicker* . . . and I'll keep doing it until someone in authority tells me to lay off

I also tell her teachers exactly what happens if she gets gluten so they will know it when they see it. Keep your son's teacher in the loop with that sort of information and it will help get them on the team. If they know how he's going to behave when he accidently gets gluten, they will help police his environment at school. I also throw in that reactions to gluten can change over time and that some kids will start throwing up or have diarrhea . . . just to throw in a few more nasty things that they really don't want to deal with so please keep a watchful eye.

[I hate gluten]

Thank you for the responses. He is back to his gluten-free self again. (thank the maker) I do have an emergency snack and treat bucket at school for him. They have been really good at snack time on giving it to him. I also sent a special plate of food for his valentines lunch. He has been gluten free for alittle over a month now with wonderful progress. This was his first gluten-free holiday and I guess they did not inform the parents that were handing out treats during the different games. It does scary me though thinking about him going a full day next year in K. Now he is in preschool and only really eats snack at school, but next year he will go a full day. Luckily his class will only have 8-11 kids in it and I will be packing his lunches. I did get some cut outs he did in class today and could tell his fine motor was not quit back to gluten-free normal. But did get good news though! He pedaled a bike for the first time. His gross motor skills have also been a problem and he has never no matter how much he tried been able to pedal a bike. Now that he can that is all he does outside. The teacher has to drag him off it. I can not tell you how long I have waited for this, he trys and trys and now he can. Thanks again for all the responses. I know I was at my wits end on my first post, thanks for listening. S

[Darn210]

If you are able to, I suggest that you volunteer to work a couple of the parties at school. I worked the parties at my daughter's school the first year so that I could see first hand how they are run and it also allowed me to keep an eye on my daughter. This year I didn't, but I already knew what to expect and my daughter (now 8) is very vocal about what she can and can't have when I'm not with her. We've also talked about the fact that no matter how prepared we might be, there are going to be times where the other kids will get to have something and she won't and in cases like those, we will have a special treat at home or go out for ice cream (depending on the magnitude of situation). I always tried to make it a little better than what she missed . . . to reward her patience and keep her from being tempted. Five is young but with your help, he'll learn that he might not get the same things as the other kids but he'll get something as good or even better.

Did he realize how much he changed after eating the cookies? Did he realize he couldn't cut correctly with the scissors? and that he had a hard time paying attention? and was he getting into more trouble? I would point these things out to him (in terms that he can understand and using specific examples). I would also point out to him how taking the gluten out helped him to learn to pedal a bike. (And that's great, by the way ) . . . these points just to reinforce with him how important it is to eat only what is safe.

Help him learn some rules about eating food that wasn't given to him by you . . . is it something he's had before? . . . did it come directly from his teacher(assuming the teacher received it from you or has a 'safe' list)? . . . I told my daughter if it didn't fit the rules, just bring it home and I would check it out. Now I do very little, my daughter (and kids in general, I think) caught on very quickly and knows in almost every situation what she can and can't have. You'll be surprise how quickly he can become his own advocate.

[I hate gluten]

Yeah I think I am going to have to go back to volunteering again. I skipped the last 3 parties so my boys would not get use to me at all the parties when they are in K. (son is a twin) Until I am confident he can handle any situation and have all the ground rules set. I have not talked to him about his behavior and cutting being off because of the gluten, I actually was going to when he was back to his gluten-free way. I think that may put it back into perspective. I took him to Trader Joes last night and the worker told us he was a very well behaved child. (boy little did he know what happen the other night another groccerie store.) So all in all our first glutening was hard but I know what to expect now.

[mimommy]

Your child is still very young and may not yet possess the reasoning skills to make selective choices, so simple lessons help teach the rules of gluten-free eating. Unforunately the hardest lesson of all is getting glutened! Lots of 'high fives' when a breakthrough happens (like pedaling) reinforces to them just how important and positive this new way of eating is for them. Start reading food labels together to foster both your child's understanding of what is ok to eat and to build early reading skills. Make gluten-free cookies or brownies together. Catch them at something 'good' like listening, taking intiative and responsibilty for themselves. Try to avoid the meltdown moments by shopping alone--lol.

If you can, volunteer to be 'room mom' for the class. I did this for my daughter this year so that I could be there during the most obvious opportunities for cc, and to have a little control over what is served at the holiday parties. Hopefully you are better at delegating than I am. I have wound up paying for most of the parties, but was able to provide goody bags with non-food items (pencils, erasers, stickers) and gluten-free treats like candy. I baked a batch of regular brownies and gluten-free brownies, so it was no big deal for my daughter to have the same treat as everyone else.

The social issues are tough for kids--my little one gets tired of being asked why she has to have a special snack. She HATES to hear me talk about the symptoms. She desperately misses pop-tarts. But on the up-side, she is taking responsibilty for her own health by learning to read labels and say 'no' to well meaning friends who offer to share lunch box items. And btw, all the constant harping does pay off--she heard me discussing 'malted barley'as a forbidden ingredient, and later that week avoided being cc'd because she saw it on a label and refrained from eating it.

Hang in there! What an amazing recovery you have already witnessed, since your first post here. Your kids are still young, and believe it or not, will eventually learn to take responsibilty for themselves. I was a nanny for a little boy who had so many of the same issues you have mentioned. Behavior, short stature, inabilty to focus, lashing out, distended belly, hives. If I had known then what I know now...

[I hate gluten]

MIMOMMY- Thank you so much for the post. It was very encouraging and much needed. I am still in awe of how simple just switching to a gluten-free diet has changed our lives for the better. I was actually talking to a celiac parent at trader joes and she asked about my little man and was dumb founded at what I was saying because it was describing her son. He also tested neg (they test all her kids every year she said), but never put him on the diet. After telling her my progress in not even a month yet, she was going to switch him over to a gluten-free life style. I found it odd her being gluten-free for 2 years, but hope it helps her son. I also found a great gluten-free bakery that makes take out pizzas. Guess were I am going this weekend. My son has been craving pizza since day one. So it will give him and I some one on one time to talk about food if we are at a gluten-free place. Thanks again. S

Your child is still very young and may not yet possess the reasoning skills to make selective choices, so simple lessons help teach the rules of gluten-free eating. Unforunately the hardest lesson of all is getting glutened! Lots of 'high fives' when a breakthrough happens (like pedaling) reinforces to them just how important and positive this new way of eating is for them. Start reading food labels together to foster both your child's understanding of what is ok to eat and to build early reading skills. Make gluten-free cookies or brownies together. Catch them at something 'good' like listening, taking intiative and responsibilty for themselves. Try to avoid the meltdown moments by shopping alone--lol.

If you can, volunteer to be 'room mom' for the class. I did this for my daughter this year so that I could be there during the most obvious opportunities for cc, and to have a little control over what is served at the holiday parties. Hopefully you are better at delegating than I am. I have wound up paying for most of the parties, but was able to provide goody bags with non-food items (pencils, erasers, stickers) and gluten-free treats like candy. I baked a batch of regular brownies and gluten-free brownies, so it was no big deal for my daughter to have the same treat as everyone else.

The social issues are tough for kids--my little one gets tired of being asked why she has to have a special snack. She HATES to hear me talk about the symptoms. She desperately misses pop-tarts. But on the up-side, she is taking responsibilty for her own health by learning to read labels and say 'no' to well meaning friends who offer to share lunch box items. And btw, all the constant harping does pay off--she heard me discussing 'malted barley'as a forbidden ingredient, and later that week avoided being cc'd because she saw it on a label and refrained from eating it.

Hang in there! What an amazing recovery you have already witnessed, since your first post here. Your kids are still young, and believe it or not, will eventually learn to take responsibilty for themselves. I was a nanny for a little boy who had so many of the same issues you have mentioned. Behavior, short stature, inabilty to focus, lashing out, distended belly, hives. If I had known then what I know now...