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Grace'smom

Will My Child Return To Herself?

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Ok... sorry for being a double poster today but as a new mom to the world of celiac, I could really use some encouragement tonight! About a month ago I wrote about the grieving process for my newly diagnosed 6 yr old little girl, Grace. I am so sad that my gentle hearted, happy, happy, happy little girl who is so warmly received by others because of her compassionate spirit and loving personality is having such a difficult time. We found out that she had celiac disease literally, by an accidentally ordered blood test. A nurse at a specialist's office for thyroid issues circled the wrong blood order 'bubble' on the lab slip, and thus launched an investigation and then the endoscopy. Grace was completly asymptomatic. There's no "win, win" here for her; because she doesn't feel better. She felt fine before, and sees this as a huge negative. For her, I think it is the lack of control she has over this major life change. A social worker in the hospital's GI dept. told me that is why so many young children begin having tantrums post-diagnosis, because it is a way to try and regain control. My once easy going and good natured child is now throwing regular tantrums, shouting at the top of her lungs at her little brother and sisters, refusing to go to bed; I am STUNNED by the depths of the behavior change. I never saw this with her before, ever. She hadn't been in a "time out" since she was a toddler! And yes: I completely get why. I get it. Its hard for her and I ache for her. I've lined up an appointment with the social worker this week for counseling for Grace, and me. I've made another appointment with a child nutritionist who will cook with her. We took a field trip to a gluten free bakery today in Massachusetts. I'm really trying!!! This morning, she and I created a journal for her to write out her feelings (she's entering first grade and so I had to write sad/mad/happy/silly etc. on the inside cover, along with pictures, so she could copy the words.) I just need to hear from someone else that their child went through this too, and eventually returned to themselves. My fear is this: I read about teenagers getting depressed over having celiac. I look down the road and think: is this it? Has this changed her forever? Is she going to remain angry? I miss the happiness in her eyes, the joy in her spirit. There are still moments of that there, but lately more often than not, she is a huge challenge to parent. Please tell me this will get better and she will return to herself!!!!! Thank you, Emily

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I am so sorry to hear that she is having such a hard time with it. I don't have children of my own, but I do work in a childcare center. There are 4 children who have specific dietary needs- one with celiac. At snack and lunch time, they become a little subdued and get that sad look in their eyes. As they are younger than your daughter and have lived with it for literally as long as they can remember, (they are around 4 yrs old), they don't put up a fuss about it. Their attitude is different at meal times though. During play time, they are completely opposite- they have energy, play well with others and they have joy on their faces like any other child. During play they have the same choices as everyone else and are treated like everyone else, which I think is a contributing factor. I hope that once your daughter gets used to having her special diet that she will return to being her usual self.


Self diagnosed as gluten free as all tests were negative and the doctor was completely useless.

Gluten Free since June 2010

Suspecting soy and milk as of June 2011

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I hope Grace gets better with the disease. Have you found a local children's support group? It might really help her. If you can't find a kids one, at least try the adult one. My son is gushed over at the adult meetings. He's like the long lost grandchild. One thing that helps us a lot on the "down days" is to make a list of the things we wouldn't have if my son didn't have Celiac. A big one on there is the people we would never have met and the great friends we've made that we wouldn't even know.

Is your whole family gluten-free right now? That might help too. At least in her own home she wouldn't feel different.

I would really try to find as many replacements for her favorite foods as possible. There really are TONS of good gluten free foods. Let me know if you need ideas or help. Oh, one thing that my son loved about Celiac - we never ate in the TV room really until after diagnosis. Now we have weekly pizza and movie nights where we rent a movie and eat homemade gluten-free pizza. The pizza is fantastic and loved by everyone who tries it and the "treat" of being able to eat and watch a movie is a special thing.

Maybe for a little while you need to try really hard to limit or even eliminate any events that involve eating. Just until she gets her feelings in check. Eat at home, go to summer BBQs after the food has been eaten. Don't let her know you're doing it, but just be late for things and nonchalant. Maybe you just need to get past the newness and different-ness of the diet.

If you have any family vacations coming up, go to Disney World. They do gluten-free incredibly and my son has many great memories of special times there that wouldn't have been if he didn't have Celiac. They treat the kids great!

My heart goes out to you both. Good luck!!

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I am a teen myself, and at first when driving around with my mom, looking at all the fast food places that I knew I would probably never set foot in again was super depressing. Now almost a year later it is a lot better. But sometimes, at your bff's birthday, or at your aunts yearly BBQ...you get pretty crabby. :rolleyes: Sometimes, I'm even surprised at myself! As time goes by, it will get better. Especially for little kids. Good job for putting her on the diet tho! :lol:


Went gluten free as of the summer of 2009

I have also now declared doctors as not really very smart

(No offense to all the good ones)

Gluten is sneaky and not to be trusted...

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I just saw on another post that your daughter missed rice crispy treats. There is no need for her to miss those! Traditional ones made at home with gluten free crispy rice cereal are absolutely no different than if you made them with Kellogg's Rice Krispies - well except that they are gluten free! :D

You can get the cereal off amazon using their subscribe and save much cheaper than any place I've found locally. I use this for things like Pamela's chocolate chunk cookies, Annie's mac & cheese (tastes just like Kraft's blue box mac & cheese), other cereals, and a few of our other favorities.

Also, we make rice crispy treats using Karo syrup and peanut butter and putting melted chocolate on top. YUM!

My son's classmates LOVE the monster cookies we make.

Really, inside your home she really can eat almost exactly like she did before. Outside your home you just need to be a little creative - avoid meals for a bit until she gets used to things, bring incredibly yummy desserts for all to share that everyone devours, do some special dining things (in addition to movie night, we've done luau night in the middle of winter, special meals, picnics, etc.).

You really can make this "fun" for her and for you. This doesn't have to be a life sentence. It can be a gift - even if she wasn't feeling poorly before. The trick for us is to gush over the good things and blow the bad things off.

Good luck!

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I make rice crispy treats using rice chex or honey nut chex. my son loves them - as the whole family does. We also will add white choc chips in it before it cools to make it have a diff flavor as well.


Son officially diagnosed 3.18.10 with celiac biopsy results. age 12.

daughter, 10, diagnosed fructose intolerant 2009.

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It might be worth checking with some of the people here who have suffered from 'gluten withdrawal.' I believe some of them felt exhausted, fuzzy headed, upset, etc... during that time period. Perhaps that might be contributing? If that's part of the problem, at least that definitely goes away! :)

Also, when she has these huge tantrums, do they seem more extreme than normal? Or out of control, like you can't get them to stop, or like she's just so angry she can't stop herself?

I ask only because my son went through some of that when he went off gluten, and it turned out to be a food sensitivity that he was getting MORE of with gluten-free foods (corn and eggs). But since we have eliminated that food, I can notice the difference between 'I'm furious and angry and upset at my diet today' vs. 'I can't seem to control myself today, I ate something bad for me.'

So I just put it out there in case your little one might be having something like that.

If it's just mood? At least for my kids, it did improve, but there are still sad days. usually it's when someone has a party or an event with food, and they really just wish they could join in. I've tried to get them more involved in the cooking, and we are looking for foods they really 'like,' so they can know that they'll have good food at the parties.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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It might be worth checking with some of the people here who have suffered from 'gluten withdrawal.' I believe some of them felt exhausted, fuzzy headed, upset, etc... during that time period. Perhaps that might be contributing? If that's part of the problem, at least that definitely goes away! :)

Also, when she has these huge tantrums, do they seem more extreme than normal? Or out of control, like you can't get them to stop, or like she's just so angry she can't stop herself?

I ask only because my son went through some of that when he went off gluten, and it turned out to be a food sensitivity that he was getting MORE of with gluten-free foods (corn and eggs). But since we have eliminated that food, I can notice the difference between 'I'm furious and angry and upset at my diet today' vs. 'I can't seem to control myself today, I ate something bad for me.'

So I just put it out there in case your little one might be having something like that.

If it's just mood? At least for my kids, it did improve, but there are still sad days. usually it's when someone has a party or an event with food, and they really just wish they could join in. I've tried to get them more involved in the cooking, and we are looking for foods they really 'like,' so they can know that they'll have good food at the parties.

Thanks for your reply. I thought over your questions, and I guess my answer would be that where all of this behavior has only happened post-diagnosis, I probably can't blame other food allergies. She has always been an extremely calm and gentle and happy child. Of my 5 kids, the "easiest" to parent because of her good naturedness. I think its a part of the grieving process. We met today with a social worker from Children's GI dept. who specifically treats celiac kids and their families. She had some great suggestions for Grace on how to direct her feelings, particularly when she felt like she was about to tantrum or start yelling. Grace put the ideas into practice this afternoon and we did have a better day. Personally - I am exhausted with the rollercoaster she's been on and am looking forward to months and yrs down the road, when its a way of life. I expect road bumps at each developmental stage...pre teen, teen, college, etc. but hopefully this initial adjustment phase will be the bumpiest we see. Appreciate all of the kind posts and encouragement. Everyone on this board has been so helpful to me. Emily

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My son went through horrific moods when we went gluten free. I did ask where in the heck my son went. I wonder if her having a fit over a certain item is her way of expressing her anger over the issues and withdrawals are making it that much worse. I cannot find my post, but my son was having a very hard time. his grades slipped in one month's time, he was extremely mouthy and angry.

he is a lot better now and slips from time to time :P

he got a scholarship for a camp here in our area that is hosting a couple weeks for celiac and diabetic children. I am hoping this helps. it was also during that trial of withdrawals that a wonderful lady here set up to have her daughter and my son be penpals! that helped too!

try those oreo type cookies I sent you the link for...he tried them and LOVED them! his 5 year old bro loved them too!


Son officially diagnosed 3.18.10 with celiac biopsy results. age 12.

daughter, 10, diagnosed fructose intolerant 2009.

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My son went through horrific moods when we went gluten free. I did ask where in the heck my son went. I wonder if her having a fit over a certain item is her way of expressing her anger over the issues and withdrawals are making it that much worse. I cannot find my post, but my son was having a very hard time. his grades slipped in one month's time, he was extremely mouthy and angry.

he is a lot better now and slips from time to time :P

he got a scholarship for a camp here in our area that is hosting a couple weeks for celiac and diabetic children. I am hoping this helps. it was also during that trial of withdrawals that a wonderful lady here set up to have her daughter and my son be penpals! that helped too!

try those oreo type cookies I sent you the link for...he tried them and LOVED them! his 5 year old bro loved them too!

Thanks. I hadn't factored in the withdrawals part... could be that is it too. Since we've met w/the Chidrens social worker she's been so much better. Writing/drawing in her journal. Another big step was that while we initially had created a gluten free shelf in the pantry, the counselor and I talked about it and I told her we were moving all of her food into a completely different set of cabinets in the kitchen, at her reach. Grace loves the new "pantry" and we decorated the inside cabinet doors today with her artwork. I used pretty cloths to line snack boxes for her, and now all of the cooking, baking, sandwich making and snack foods are all together. She loves that she has her own private space and it lifted her spirits more than I realized it would. I think its easier than opening the pantry and seeing goldfish and the old cookies she used to eat in the shelves above her own gluten-free foods. We have not baked the oreo cookies yet as the stomach flu is going through the house but hopefully this week! Thanks again, Emily

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you know what I else I forgot to mention. When he was first diagnosed, Cody told the social worker (we talked to one too at the hosp) and the dietician that he was scared to eat. even if I said it was okay. that was a major break through in the beginning.

I am glad the pantry idea worked! B)


Son officially diagnosed 3.18.10 with celiac biopsy results. age 12.

daughter, 10, diagnosed fructose intolerant 2009.

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