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Grieving Process For Just Diagnosed Kids


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#16 Ahorsesoul

 
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Posted 15 June 2010 - 08:33 AM

I suggest you also go gluten free so there are two people instead of one all a lone. It would be a great boost. I really do not see gluten free eating as doing without. I decided when I went gluten free to find good replacements for the items I really loved. There really isn't anything I can't find or make so I do not feel I am left out. You can do this for your child. Let us know what it is you child wants and I'm sure one of us here can tell you what to substitute.

I was just to the GI doctor last week talking about eating gluten free. He said everyone would benefit from a gluten free diet. He is not a celiac specialist so I was pleasantly surprised by his remark.

Remember there are withdrawal symptoms for a few weeks.
  • 0
1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

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#17 celiac-mommy

 
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Posted 15 June 2010 - 10:37 AM

I'm a little late to the game and you've received such great information. Both of my kids have Celiac. My dd was 4 when she was diagnosed and 2.5 years later my ds was diagnosed. DD is 8 now and never went thru the grieving process. I thought by my son being so young (2) when he was diagnosed that we would avoid it as well, but lately all he tells me is that if he could have 1 wish in the whole world, he wishes he could eat gluten :( (he's almost 5 now). I think it's because he's the only one at his preschool who has a different lunch and all the kids are staring at him while he eats. I think the issue is, is that they don't want to be eating their crappy processed food lunches and they're looking at his awesome sandwiches made from pancakes, "super" quesadillas, fresh strawberries, etc.. and they want his lunches!

They help with all of the meal planning, they pick what goes into their lunches and snack boxes and we all eat gluten-free in our house, so there's no issue there. I refer to foods as "safe" and "not safe". This seems so work really well for my son instead of telling him he "can't" have it. He also doesn't have much of a reaction when he gets glutened, so telling him it will make him sick doesn't work. I always try to focus on the foods they can eat and not what they can't. I also cook and bake a lot, so whatever they want, I can usually duplicate to be gluten-free.

Parties were an issue at first because I didn't want them to ever feel left out, so I always call the parents ahead of time to find out their menu, talk to them about the "food allergies" and then I send the kids with a duplicate of whatever they're having. For the most part, the kids are the ones who tell their parents "I really want them to come to my party but they're allergic to gluten so we have to have something special for them" :wub:

This will get easier over time, and don't be surprised if she sneaks food in the next month or 2. In the beginning, my son once waited until the teacher wasn't looking and ran over to the lunch tables and took a bite of all 15 hamburger buns that had been set at each plate :o :rolleyes:

Good luck and keep us posted on how things go!
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Rachelle 20dance.gif

Daughter diagnosed 1/06 bloodwork and biopsy
-gluten-free since 1/06

Son tested negative-bloodwork (8/07), intestinal issues prompted biospy (3/08), results negative, but very positive dietary response, Dr. diagnosed Celiac disease (3/8)


#18 Ahorsesoul

 
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Posted 15 June 2010 - 03:54 PM

Example:
One of my dd group home ladies just had a birthday party this weekend. I offered to bring hot dog rolls and a cake for the gluten free ladies so they'd have some birthday cake. I made a Kitty Litter cake. I could hear people talking about it during the party so I know it went over really well. It was special, the girl who's party it was has a cat so she loved it.

I used Betty Crocker yellow cake mix. I added cinnamon, nutmeg and cloves to make it spiced.
Made vanilla pudding.
After the cake and the pudding had cooled, mix them together.
Dump this into a brand new (please) kitty litter pan that is lined with foil or plastic wrap.

Crush a package of vanilla cookies until fine.
Take 1/4 cup of the crumbs and add some green food coloring.

Sprinkle the vanilla cookie crumbs over cake mixture, then the green ones.

Melt 12 little tootsie rolls until soft (5 seconds in microwave).
Roll between hands to make something that looks like kitty poop.
Drop these into the cake and drape some on the side of the pan.
Serve with a brand new kitty litter scoop.
Put down some newspapers and place cake on top.

People who do not like cats may not like this cake.
  • 0
1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

#19 bbuster

 
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Posted 16 June 2010 - 05:44 AM

I made a Kitty Litter cake. I could hear people talking about it during the party so I know it went over really well. It was special, the girl who's party it was has a cat so she loved it.

That is hilarious! I think I'll have to do that for my daughter's birthday!!
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Bev

Mom of Garrett - Mizzou freshman; diagnosed Jan 2005

#20 ciavyn

 
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Posted 16 June 2010 - 06:06 AM

That is hilarious! I think I'll have to do that for my daughter's birthday!!


Wow. that is a tough situation, given that she doesn't have symptoms. What clued you in that it was an issue?

As an adult, it's an emotional roller coaster, so I can't imagine being 6 and going through it. But I had a great time discovering all the things I could make for myself, that tasted WAY better than processed foods. And I second the household-gluten-free idea. It is way easier if everyone does it together. (Not to say you couldn't get things when you are away from her, but while at home, make it yourself! it's much easier than it seems). But I started trying all kinds of recipes, and I really enjoyed it.

Also, I committed myself to running for Leukemia and Lymphoma. Whenever I got down, I reminded myself of what others were facing. This is harder for a child, but is there a hospital nearby where she could volunteer to visit children there? Or, for example, as a family we watch Extreme Makeover: Home Edition, and we remind our kids what others have to live with, making our own issues often so trivial. I don't mean deny the grief -- that isn't right either. But help her at a young age, gain perspective that while this is miserable...it is not the worst. This is fixable, albeit annoying. Just some thoughts I had.

Best of luck, and have fun on celiac.com! You will find all kinds of yummy recipes. Her friends will be so jealous that her mommy makes everything from scratch and tastes so much better!
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Gluten free: Nov. 2009
Peanut and dairy free: Dec. 2009
Rediscovered dairy: March 2010 (in small quantities)
Peanuts added back: June 2010 (in small quantities)

#21 bbuster

 
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Posted 17 June 2010 - 06:44 AM

There are pros and cons to the whole household going gluten-free. Can be quite expensive when you have a large family.

Our household is not gluten-free. But I often eat that way myself, primarily as a show of support, but also I need to lose weight, and I have cut out the lion's share of wheat and processed sugar from my diet (and it's working!).

The point is, you want to support your child. For example, my son's favorite cracker was Cheez-Its. Everyone likes them, but my son liked them the most. I don't buy them anymore, because I don't want my son to sit and watch the rest of us eating them. I buy wheat crackers that my daughter likes the best but my son always thought were just OK, so it's no big deal to him. And now I have a good recipe for gluten-free cheesy crackers that we all enjoy.

Same thing with donuts. The only time my daughter gets donuts at home is for her birthday sleepover party, and then I buy some gluten-free ones for my son.

Once we had some out of town friends visit, and they wanted to go to a local restaurant famous for their huge homemade yeast rolls (as a novelty, they throw them to you!). When you walk in the place, that's what you smell. So my husband and daughter went with our friends, and I took my son to a Mexican restaurant where we could enjoy corn chips and salsa and tacos. And he was very appreciative, and we had a great time, just the two of us.

Things will get better with time, as you work out what's best for your situation.
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Bev

Mom of Garrett - Mizzou freshman; diagnosed Jan 2005

#22 Ahorsesoul

 
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Posted 17 June 2010 - 07:42 AM

Bev, You are great!
  • 0
1960s-had symptoms-could have been before but don't remember
1970s-told had colitis or nervous stomach-was given phenobarbital, felt great but still had symptoms
Me, dd and ds diagnosed with Lactose Intolerance
2000-osteopenia
2001-had stroke because of medications I was given
June 2003-saw Chiropractor who specialized in nutrition: Celiac Disease not Lactose Intolerance, went gluten free with once in awhile cheating, off soy and dairy for about 6 months
June 2003-found excellent doctor for fibromyalgia (who has found out she has Celiac Disease)
May 2006-went gluten free with NO cheating-excellent! Made all the difference in the world

#23 Grace'smom

 
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Posted 17 June 2010 - 03:12 PM

I'm a little late to the game and you've received such great information. Both of my kids have Celiac. My dd was 4 when she was diagnosed and 2.5 years later my ds was diagnosed. DD is 8 now and never went thru the grieving process. I thought by my son being so young (2) when he was diagnosed that we would avoid it as well, but lately all he tells me is that if he could have 1 wish in the whole world, he wishes he could eat gluten :( (he's almost 5 now). I think it's because he's the only one at his preschool who has a different lunch and all the kids are staring at him while he eats. I think the issue is, is that they don't want to be eating their crappy processed food lunches and they're looking at his awesome sandwiches made from pancakes, "super" quesadillas, fresh strawberries, etc.. and they want his lunches!

They help with all of the meal planning, they pick what goes into their lunches and snack boxes and we all eat gluten-free in our house, so there's no issue there. I refer to foods as "safe" and "not safe". This seems so work really well for my son instead of telling him he "can't" have it. He also doesn't have much of a reaction when he gets glutened, so telling him it will make him sick doesn't work. I always try to focus on the foods they can eat and not what they can't. I also cook and bake a lot, so whatever they want, I can usually duplicate to be gluten-free.

Parties were an issue at first because I didn't want them to ever feel left out, so I always call the parents ahead of time to find out their menu, talk to them about the "food allergies" and then I send the kids with a duplicate of whatever they're having. For the most part, the kids are the ones who tell their parents "I really want them to come to my party but they're allergic to gluten so we have to have something special for them" :wub:

This will get easier over time, and don't be surprised if she sneaks food in the next month or 2. In the beginning, my son once waited until the teacher wasn't looking and ran over to the lunch tables and took a bite of all 15 hamburger buns that had been set at each plate :o :rolleyes:

Good luck and keep us posted on how things go!


Thank you for such a warm and creative post. That information sure helps, and I loved the story at the end about him eating the hamburger buns!!! I found my daughter hiding in the pantry last week, trying to get the lid off of a jar of animal crackers. Makes me feel better to know I'm not alone and that this is all normal. Thank you! Emily
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#24 Grace'smom

 
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Posted 17 June 2010 - 03:17 PM

There are pros and cons to the whole household going gluten-free. Can be quite expensive when you have a large family.

Our household is not gluten-free. But I often eat that way myself, primarily as a show of support, but also I need to lose weight, and I have cut out the lion's share of wheat and processed sugar from my diet (and it's working!).

The point is, you want to support your child. For example, my son's favorite cracker was Cheez-Its. Everyone likes them, but my son liked them the most. I don't buy them anymore, because I don't want my son to sit and watch the rest of us eating them. I buy wheat crackers that my daughter likes the best but my son always thought were just OK, so it's no big deal to him. And now I have a good recipe for gluten-free cheesy crackers that we all enjoy.

Same thing with donuts. The only time my daughter gets donuts at home is for her birthday sleepover party, and then I buy some gluten-free ones for my son.

Once we had some out of town friends visit, and they wanted to go to a local restaurant famous for their huge homemade yeast rolls (as a novelty, they throw them to you!). When you walk in the place, that's what you smell. So my husband and daughter went with our friends, and I took my son to a Mexican restaurant where we could enjoy corn chips and salsa and tacos. And he was very appreciative, and we had a great time, just the two of us.

Things will get better with time, as you work out what's best for your situation.


Thank you, Bev. We found out she had celiac quite by accident. During a thyroid screening (she's hypo thyroid) a staff member in the doctor's office was copying over the dr's lab orders onto a new lab form, and "accidentally" filled out the bubble for a celiac screening. Can you believe it? Her endocrinologist was stunned when he wound up with positive results for a test he never ordered. She was retested twice within the next 6 months and both times the numbers rose, so an endoscopy was done at the end of May. And here we are. You gave me some wonderful advice and I appreciate all of your kind and thoughtful input. Emily
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#25 CeliacMom2008

 
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Posted 17 June 2010 - 07:03 PM

Hi everyone

I am reaching out looking for support from moms and dads of kids with celiac who struggled emotionally. My 6 yr old daughter, Grace, was diagnosed two weeks ago. I expected this to be a difficult transition, but I wasn't prepared for the grieving she is experiencing over the radical diet change. Every few days, she gets mentally "stuck" on something containing gluten that she really, really wants to eat and thus begins a downward spiral of tears, and begging her Dad and I to "give in" and let her have the treat. (Of course, we don't, and try and re-direct her to other can-do options). The tears can go on for up to an hour, with her distress that we won't just give the snack to her. I'm struggling with the position she has put me in as dictator of what is and is not allowed. I wanted to avoid having to say "no" to foods, so I've instead had her read labels with me to look for the word "wheat" or other alert words. That way, we could discover the answer together, and the pressure wouldn't fall on me to be the answer source. No matter, the tears are still on full-force when she hears that it's got gluten in it, and she literally BEGS for the snack. We've gone to the library and even found a book about a little girl with celiac disease. She loves the story. I've loaded my pantry with gluten free snacks. I just think this is going to take time, time, time. In the meantime, what words that you used help your child when they first began this diet and asked for gluten? She did not suffer many physical symptoms of celiac, so I can't point out to her that she is feeling better, there isn't an obvious difference. Please help me guide her lovingly through this process with any ideas that worked for your children when they were distraught. I'm not used to the meltdowns and feel like the bad guy. Thank you, Emily


The ONLY food we have found that my son used to like that we can't replace gluten-free is licorice. When he asks about a food I haven't replaced I just say "That sounds fantastic! I'm sure I can find a recipe for a gluten-free version. I'll get a recipe and we'll make those." Then follow through. Sure they have to learn that it might not be right this very minute, but they also learn that hanging out in the kitchen with Mom can be fun. We've made gluten-free donuts, mozarella cheese sticks, all kinds of cakes and cookies, cheesecake, breads, even soft pretzels. And when we've had a flop we just do an "Oh man that didn't work! We're going to have to keep trying!" The thing is to teach her to roll with it.

Also, we were really nonchalant and up beat about the diet. Our house when gluten-free. At first we NEVER ate anything in front of him, talked about any G food in front of him, etc. Eventually you have to get past that, but the first month or two you need to make it as easy as possible. After a few months (don't remember exactly when), my son came home from school one day very sad saying the diet was really hard. At this point we were ready for tough love and he got a quick, "No, dying is hard. This is just about food." I would only recommend you use that once and it must be timed correctly. We still have bad days and we comfort and work through them, but thankfully we've met some really terrific people, helped some great people, had some fantastic family moments, etc. that we can all say would never have happened if he hadn't been diagnosed. When he has a really bad day we can pull out the, "Yeah, but if you didn't have Celiac you'd have never met _______, and can you imagine not knowing them?" That really helps us. Life's about tradeoffs...
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#26 Skylark

 
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Posted 18 June 2010 - 11:47 AM

The ONLY food we have found that my son used to like that we can't replace gluten-free is licorice.

You sound like such a cool mom. Mine did a lot of that too and it helped SO much.

By the way, licorice Jelly Belly jellybeans are gluten-free. B) They're not quite the same texture as the floury stuff but maybe your son will like them. I do miss all-sorts.
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#27 sandy_swanson1103

 
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Posted 19 June 2010 - 06:12 AM

Hi,
My name is Sandy, and my 7 year old daughter just got diagnosed with Celiac Disease about a month ago. I too, am going through some rough spots with her not being able to eat her favorite foods. Although I must say, she is coping ALOT better then me!! LOL I ALWAYS take her along when we go grocery shopping and I let her pick out her own foods. ( within reason ). She does have her days when she has a little melt down, but then she goes and picks out something of hers that is at least close to what she is craving. She has actually been the one who asks " is this Gluten Free? I have Celiac Disease. ". She walks up to the counters at a fast food place and orders her own food now too. We don't eat out often, but when we do, we let her be the big girl she wants to be. I am having a hard time right now with trying to figure out what lotions, shampoos, detergents, toothpaste and stuff like that, that I should get for her. I am just so new to all of this and its hard right now. We are a low budget family too, so this is extremely hard right now budget wise. I hope that we can learn and go through this together. Did your daughter have a biopsy done? My daughter did, and they said she DID have damage done to her intestines, and I just felt horrible for her! She is feeling better though. She still sleeps ALOT though, and hopefully that will change over the next few months. I hope this will help/or at least make you feel better. :)
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#28 ryebaby0

 
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Posted 23 June 2010 - 04:32 AM

All these suggestions are really good -- my son was dx when he was 9, my husband a few months after that. Grieving is very real. Reassure her she won't always feel this badly. It will take months to adjust. BUT...some other things to try that worked for us:

gluten free cooking school...I bought a set of utensils (basics, in colorful/fun styles). He and I cooked, the family tested, I allowed him to throw out icky stuff (and there was about a 40% fail rate!). Then we worked up to recipes. I even filmed a "lesson" to youtube to relatives. Invite her friends. Make it all a big adventure. (Fake enthusiasm if you have to)Encourage risk taking, planning, bonding!!

The "bleach" metaphor is apt. She will pick up your attitude, and you need it to be compassionate but no-nonsense. Do not feel sorry for her. (okay, do that when she's not looking)I would not bring her into a grocery store just yet. Unless it's a Whole Foods or Wegmans!!


Never, ever, EVER cave in to a gluten demand. Here in the early stages, that's especially important. Remember the bleach!!Our mantra was, and is "we'll find a way to make it work" but we also leaned on "everyone has something, this is ours". And if he would say "I can't have......" I would just reply "but you can have......". I believe children test us, poke at us with those emotionally charged questions, to test our resolve. They want to know that we feel it's not the end of the world.
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton

#29 seezee

 
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Posted 04 July 2010 - 04:33 PM

A couple of other suggestions - really cool lunchboxes. We ordered some made by widkins with horses. Meeting other kids with celiac if you can find them helps. Learning to make favorite foods gluten free helps.
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#30 ABQturkey

 
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Posted 05 July 2010 - 08:13 PM

Our daughter was diagnosed at age 6 right at the beginning of first grade; it's been almost two years that she's been gluten-free, but right from birth she had gastro "issues". A few months ago, we actually did take her to a child psychologist for behavioral reasons. She was crying a lot and being mean to her friends. After listening to all we had to say, the dr. said he was convinced that her being 'different' was the core to her tantrums and attitude. He pointed out that even though we try to make things as normal as possible for her (school lunches and parties, birthdays, etc.) she picks up on all that WE have to go through to prepare for something as simple as a sleepover and it just reinforces to her how different she is. He said that he's cofident that she will outgrow this when she gets to be 10 or so - more an age of reason. We all define 'normal' in our own way. We try to celebrate her uniqueness with her and help her see that ok - maybe she's the only one with celiac disease, but what about the kids who have to sit at the peanut allergy table in the cafeteria? They have it rough too! Sometimes she will have a meltdown; the last one was after a soccer game and I didn't bring anything even remotely close to what the others had for their 'treat' afterward. Fortunately for us, she remembers how badly she used to feel and how sick she was and we can remind her of that. I also agree that the well-timed one-liners are very effective, because during the soccer incident (remember she's 8 now) when she finally stopped crying long enough to tell me "I HATE HAVING CELIAC DISEASE" I said, "You know what? I do too - it really sucks!" She knows I hate that word and it distracted her just long enough for me to pull her in my lap and comfort her until she was over it. Keep doing research and asking questions. Medical websites are great for the facts, but I have gotten more from these forums than anywhere else. It's my own little support group! Good luck!
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