My Son Is On An Emotional Rollercoaster

[Sagesmama]

Sage has been gluten-free for only about 3 weeks and is having a really tough time with it. He's an wreck of emotions, crying, screaming, being aggressive with his baby sister- it's almost like the emotional upset that we experienced with him 2 years ago that got him a 2 day psych eval. and a misdiagnosis of "anxiety" which I now understand in my heart was the beginning stages of Celiac.

I get the sense that he's feeling this huge loss of control... and rightly so! What 5 year old can really comprehend the term "lifetime maintainence" when it comes to eating gluten-free? I also maybe feel like the better he feels physically, than obviously the more energy he has that just wasn't there before because he was so fatigued. He doesn't know how to unleash it... and we're trying to do our best by giving him choices of physical activity (we just signed him up for T-ball!) but since these things have never been a big part of his life, I can't expect that he wants to put down the gentler activities (arts and crafts, boardgames and computer games) and suddenly be an "All Star".

I just feel so horrible for what he must be feeling inside... I know it's hard and confusing and frustrating but what I don't know is how to make it easier on him, how to make him understand, how to get his behavior under control.

I need to figure it out soon though because his daily crying fits are pulling so hard at my heartstrings

[hungryforlife]

Ahh. I don't have any concrete answers for you but just wanted to give you a (((HUG))) and offer some encouragement.

Our son, four, may have celiac disease as well, and we are in the process of learning all we can about it. One thing I know that I would do with him is not burden him with the details of celiac disease at this age. They are too young to have reasoning abilities (usually 7/8 - before they can comprehend reasoning) so why stress them out about it. All my son would hear is don't, or you can't have that, and as with any child would want what he cannot have all the more. As we learn how to make more gluten-free choices, or food will just change, like its normal.

ALso, there seems to be quite a few "kid friendly" gluten-free choices out there that are enticing to kids, he doesnt really need to know that it is different food. I bought some for me, and my son loves them, he just thinks it is something new. not different. And at 4/5 any conditioning that you can do now will just become normal to him as he gets older. Just like some kids not participating in halloween. So kids do, some kids dont. Some parents let their kids have sweets, some parents dont. Kids are very adaptable. If he always gets a special treat when the other kids are having something else at preschool, he will accept that.

My son is too young for organized sports yet, but I make sure he gets outside time everyday with me. If it is not outside weather we have a ticklefest on the floor. I can tell a major difference in him when he gets more mommy time.

Good luck to ya!

[cshaw]

Sage has been gluten-free for only about 3 weeks and is having a really tough time with it. He's an wreck of emotions, crying, screaming, being aggressive with his baby sister- it's almost like the emotional upset that we experienced with him 2 years ago that got him a 2 day psych eval. and a misdiagnosis of "anxiety" which I now understand in my heart was the beginning stages of Celiac.

I get the sense that he's feeling this huge loss of control... and rightly so! What 5 year old can really comprehend the term "lifetime maintainence" when it comes to eating gluten-free? I also maybe feel like the better he feels physically, than obviously the more energy he has that just wasn't there before because he was so fatigued. He doesn't know how to unleash it... and we're trying to do our best by giving him choices of physical activity (we just signed him up for T-ball!) but since these things have never been a big part of his life, I can't expect that he wants to put down the gentler activities (arts and crafts, boardgames and computer games) and suddenly be an "All Star".

I just feel so horrible for what he must be feeling inside... I know it's hard and confusing and frustrating but what I don't know is how to make it easier on him, how to make him understand, how to get his behavior under control.

I need to figure it out soon though because his daily crying fits are pulling so hard at my heartstrings

Oh wow. Your post made me tear up. I have a 5 year old boy too. He was dx in Nov. and has been gluten-free since. Before being dx he was the most gentle soul, and loved as you say, "quiet" activities. When he first started the gluten-free diet (or Good Food as we sometimes call it here) I would say it took about 2-3 weeks for him to physically look and feel better. It took another 2-3 weeks for him to be emotionally healthy. There were days when he would scream, cry, scratch and hit at his face, yell at me, and hit me. I didn't think I could last much longer. I hugged him when he would let me, and I gave him space if he seemed to want that. But he did eventually calm back down. AS he got better, we had to be careful to treat him as a 5 year old still. Boundaries and rules still existed. But we waited, and introduced things slowly. First at home, then at school.

Our boys sound very similar. Hang in there. THings should get better, as he starts to truly feel better physically and emotionally. There is no concrete timeline for this.

I did take my son gocery shopping just the two of use, to Whole Foods, and some Health Food stores. He thought it was kinda cool, and called them "his stores" and "his food" I also made a cupboard that he could reach that had "his food" in it. Now the whole house is pretty much gluten-free but it took awhile.

My heart goes out to you!!! And I wish you and your family the very best. Keep us posted.

[ryebaby0]

I think we've all been here -- it will get better, honest. He's grieving, you're going to be grieving too -- but it will be OKAY! In the meantime, our advice from our own journey

1. Have him (or you) make a list of 4 or 5 foods he loves and can't have. Make it a "spy mission" or something to hunt down replacements. IN the meantime, banish his favorites from the house entirely. My non-gluten-free son and I still eat donuts downstairs where nobody can see!

2. Make a long list of the mainstream things he can still have: Stax, Hershey bars, Mike and Ikes', PopSecret Popcorn, Oscar Meyer Bacon, Ore Ida fries, apples, oranges, YoPlait Gogurts , etc....

3. You have to stay positive! Do your crying where he can't see it. You have to project "it's not the end of the world". That also includes no bending established rules because you feel sorry for him.

4. Give him permission to try stuff and hate it. After you find a few "easy" gluten-free foods, get a cookbook or go online, and order/bake a bunch of stuff. If he's artsy, have him make a comparison chart, figure out a rating system, and start taste-testing things. Yes, it's a lot of money, but it isn't "wasted", it's spent on giving him control, choice, and optomism. We called this our "food adventure" stage.

Yikes! I'm babbling! Too much coffee

joanna

[Sagesmama]

oh wow- thank you so much everyone... your words are comforting and encouraging.

We had a great meeting yesterday with the nutritionist and she actually told me (based on the food diary I filled out for the past week) that he's getting enough of what he needs, and that I need to r-e-l-a-x, that it will all come in time and he'll get used to it.

I like the "investigative food finding" idea- he would totally go for that

This child of mine sure knows how to give my emotions a run for the money... I've always raised him to be so empathetic and self-less and I guess I never realized that at times, he needs to mourn and grieve and think about HIMSELF... now I know that and will make a different kind of effort to restrain myself from trying to "make it better"... instead I need to let him have the right to be upset about it.

I'll do my crying behind closed doors for him....

[penguin]

I like the "investigative food finding" idea- he would totally go for that

I know he's only 5, but you might want to try having him help you to make his food. If you're making gluten-free brownies, explain how stuff works. Like baking powder helps make the bubbles, or if you're making bread tell him that the bubbles in bread is the yeast burping Or that the eggs in something makes baked stuff like brownies or muffins bouncy. Go a little Alton Brown on him Little boys dig the science part (in my experience)

If he has a hand (even a little one) in making his food, he'll probably be more likely to try it and like it. Also, the earlier he learns how to prepare his own food, 1: the less stress you'll have and 2: he's more likely to maintain a healthy gluten-free diet when he's an adult.

I've been cooking since I was 5, and it's the most valuable skill I have.

Easy things for him to make (almost) by himself are peanut butter cookies (only three ingredients):

1 c jif pb

1 c sugar (or 1/2&1/2 w/splenda)

1 egg

Mix to combine, roll into balls, flatten with fork, bake at 375 for 12-15 mins.

Help him make green eggs and ham by either adding veggies or green food coloring to eggs.

Give him cut up fruit and toothpicks and have him build a fruit monster or fruit people. Make him a fruit dip with strawberry yogurt, cinnamon, honey, and some oj concentrate (if you want specifics I'll post them)

Keep him distracted and involved, and he'll feel like he has more control over his situation

Hang in there, it'll get easier!

[Jnkmnky]

I have three kids eating gluten free. We shop at www.kinnikinnick.com

They have great donuts, chocolate chip muffins, bagels, pizza crusts, "oreos" *K-Toos*, white sandwich bread, Hamburger buns (cut into three slices and use two for a burger... they're very thick.) Montana chocolate chip cookies, and the tray buns are all fantastic.

[Guest nini]

my daughter is 5 and has been gluten-free since she was 3, and now that she's in school with other kids she has days where she says she feels left out because they are doing or eating something she can't. Her teacher tries to help me out by letting me know in advance about things so that I can provide a replacement treat but sometimes things come up on the spur of the moment, like another teacher in another class decides to include her class in their chocolate chip cookie making adventure or something like that.

I've gotten her a box that she keeps by the teachers desk that has a wide variety of snacks in it and candy so that the teacher always has something to offer her when these things come up.

As far as the emotional aspect of it, I say focus on what yummy things he CAN have, not what he can't. Getting him to help in baking his gluten-free treats is another good idea, my daughter LOVES this. Kids love to get messy.

He may still be going through a withdrawal period, in that case, give him some space to express his feelings and get his frustrations out. My daughter loves to paint when she's angry or upset about something.

{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}} it will get easier and if you want any tips or ideas on dealing with school and parties and such let me know. We are still figuring a lot of it out, but I'll gladly share what we've learned so far.