Gabe Got Glutened

[FoxersArtist]

I had just gotten finished explaining to my mom how frustrated I have been that no one seems to feed Gabe only the foods I pack for him. They insist on feeding him some of their food too. She agreed that it sounded like a valid frustration but hours later she fed my son some "rice" cereal. When I came back to pick up my baby he was wandering around with a bowl of the stuff in his hand and my mom informed me that he was eating rice cereal and all it was was puffed rice. She got out the package to proudly show me that it was gluten free. "Wheat free" I read out load on the front of the box. OH NO! Wheat free almost always means NOT gluten free. Sure enough I flipped the box over and the SECOND ingredient was BARLEY MALT! AH! I totally panicked, watching Gabe closely to make sure he wasn't going to have an instant reaction. No breathing problems, no swelling...whew.

I have to say, despite the relief I felt that Gabe was not going into an allergic shock, I cried because I knew that I would have a monster on my hands for the next week, and sure enough, the past few days have been miserable.

When my little 2 year old son gets glutened, he reverts to a semi-autistic state and becomes quite irritable, crying at every tiny little thing that does not go his way and a few things that do! In the past few days he has stopped using his words, he staggers when he walks and falls down a lot, he refuses to make eye contact and stares off into the distance as if lost in thought or half awake. He hasn't been eating - just playing with his food or staring off into nowhere land. He screams to go down for a nap and then screams when I put him down for a nap. He screams when I pick him up to be put down and screams to be picked up as soon as he is down. He follows me everywhere acting sooo clingy but then doesn't want me to comfort him. He hits his baby sister repeatedly, shouting "NO, NO, NO!" or rips toys away from her while scolding her (usually he is very gentle with her.) Last night he suddenly whipped his head to the side toward our livingroom windows that were at the front of the house. He looked afraid like he saw something out the window that took him off gaurd. I looked and didn't see anything, but he just kept his eyes pinned on that window, motionless. It was enough to scare the heeby-jeebies outta me since hubby was at work! How on EARTH did I do this for so long before we found out he had celiac?!

I made my mom come over this afternoon so that she could see how miserable he was. I don't want her to feel guilty but I do want her to understand what her grandson goes through when she is careless. She promised never to give him any of her food again without my permission first. I hope she holds to it and I hope Gabe gets back to normal soon.

-Anna

[dilettantesteph]

I had just gotten finished explaining to my mom how frustrated I have been that no one seems to feed Gabe only the foods I pack for him. They insist on feeding him some of their food too. She agreed that it sounded like a valid frustration but hours later she fed my son some "rice" cereal. When I came back to pick up my baby he was wandering around with a bowl of the stuff in his hand and my mom informed me that he was eating rice cereal and all it was was puffed rice. She got out the package to proudly show me that it was gluten free. "Wheat free" I read out load on the front of the box. OH NO! Wheat free almost always means NOT gluten free. Sure enough I flipped the box over and the SECOND ingredient was BARLEY MALT! AH! I totally panicked, watching Gabe closely to make sure he wasn't going to have an instant reaction. No breathing problems, no swelling...whew.

I have to say, despite the relief I felt that Gabe was not going into an allergic shock, I cried because I knew that I would have a monster on my hands for the next week, and sure enough, the past few days have been miserable.

When my little 2 year old son gets glutened, he reverts to a semi-autistic state and becomes quite irritable, crying at every tiny little thing that does not go his way and a few things that do! In the past few days he has stopped using his words, he staggers when he walks and falls down a lot, he refuses to make eye contact and stares off into the distance as if lost in thought or half awake. He hasn't been eating - just playing with his food or staring off into nowhere land. He screams to go down for a nap and then screams when I put him down for a nap. He screams when I pick him up to be put down and screams to be picked up as soon as he is down. He follows me everywhere acting sooo clingy but then doesn't want me to comfort him. He hits his baby sister repeatedly, shouting "NO, NO, NO!" or rips toys away from her while scolding her (usually he is very gentle with her.) Last night he suddenly whipped his head to the side toward our livingroom windows that were at the front of the house. He looked afraid like he saw something out the window that took him off gaurd. I looked and didn't see anything, but he just kept his eyes pinned on that window, motionless. It was enough to scare the heeby-jeebies outta me since hubby was at work! How on EARTH did I do this for so long before we found out he had celiac?!

I made my mom come over this afternoon so that she could see how miserable he was. I don't want her to feel guilty but I do want her to understand what her grandson goes through when she is careless. She promised never to give him any of her food again without my permission first. I hope she holds to it and I hope Gabe gets back to normal soon.

-Anna

I feel for you. I am so sorry. My child is fortunately old enough to say no for himself. At times like these I try to concentrate on the positive. How good it is that we now know the source of the problem. It is great that he is not like that all the time and he will be better again soon(?). My son was so skinny all his life and now he is finally putting on weight. We didn't find out what it was until he was 10, but he had been having symptoms probably since he started eating wheat. You are fortunate to have found out at a younger age.

Stephanie

[CeliacMom2008]

I'm so sorry for you and Gabe and even your mom too. I'm sure she feels awful, but I think it's a good thing you let her see what he's like. Seeing is believing and will make a lasting impression.

Hang in there...time will cure this!

[April in KC]

Poor little guy! Hope he's better now. It's sooo hard to get people to understand the strictness of the gluten-free diet. I used to get so frustrated with family members...

Anna, here's a little tip I have discovered for working with grandmas (both of them). Grandmas like to give grandkids treats, something they're not already given at home...something that will make her home "special." A while back, we identified a really good brand of gluten free cookie mix and gave several boxes to one of the grandmas, along with the right oil, parchment paper, and some new "dedicated" kitchen ware to make the cookies with.

We casually stated that we wouldn't be feeding the kids those cookies at home, that they would be grandma's special treat. Let me tell you...it works great! The kids look forward to their sugar cookies from grandma's, and she isn't tempted to feed them something else. An added bonus is that sometimes fresh baked sugar cookies find their way home in the kids' bags. ;-)

Over time, we have rolled out a few additional treats & drinks in this style...we don't give the same things at home, to preserve their specialness. It allows the family members to have that special bond over food that others have.

Also, it helps smooth out those past times when you had to reprimand family members for feeding the wrong things...it shows the family members that you understand their desire to have a special bond with your kids... which in the end is a great thing.

Don't know if that helps or not...DH and I feel like any tricks that keep the kids from getting glutened are good ones.

[ShayFL]

Yes....she meant well. It isnt easy for anyone. Poor Gabe. I hope he is better soon.

Im invited to a dinner party Friday....our host said, I will fix a gluten free dish for you. And I just have to say.....It is always better for me to cook for myself, so I can relax and enjoy your good company. Im coming to see you guys....not for the food. But fix something yummy for DH and DD. I just dont want to even let them try........