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Discouraged And Worried


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23 replies to this topic

#1 kelly79mass

 
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Posted 29 July 2012 - 06:16 PM

My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.
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#2 1desperateladysaved

 
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Posted 29 July 2012 - 06:58 PM

My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.


IF you have succeeded in beginning a gluten free diet, I would not be surprised if her appetite is slack. My appetite slacked for a long while. If this is a mental thing I know the diet is a hard thing for me as an adult. Hang in there one day she may make her own decision to follow the diet. It tends to be motivating when you suffer when you cheat. Also one of my daughters didn't eat for nearly 3 meals. Finally, she came down for a meal and said nothing about it.

I also note that a family can best support her in the diet by setting an example. Eating infront of them can cause stress.

Best wishes to you and your daughter.
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#3 GottaSki

 
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Posted 29 July 2012 - 07:00 PM

Being diagnosed with Celiac Disease rough and the learning curve is very tough - no matter what the age. Transitioning to gluten-free is not easy -- there will be many days of frustration and even tears.

In time your family will find replacements to all of her favorite foods. For now I'd suggest you figure out how to make some of her favorite meals gluten free - search those foods in this forum and you should find ways to replace them.

Time will bring knowledge along with improved health - for now hang in there, let her be angry while reinforcing the fact that gluten-free will improve her life and know that many others have gone through this transition and are here ready and willing to help your family.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#4 kelly79mass

 
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Posted 29 July 2012 - 08:07 PM

IF you have succeeded in beginning a gluten free diet, I would not be surprised if her appetite is slack. My appetite slacked for a long while. If this is a mental thing I know the diet is a hard thing for me as an adult. Hang in there one day she may make her own decision to follow the diet. It tends to be motivating when you suffer when you cheat. Also one of my daughters didn't eat for nearly 3 meals. Finally, she came down for a meal and said nothing about it.

I also note that a family can best support her in the diet by setting an example. Eating infront of them can cause stress.

Best wishes to you and your daughter.



Thank you,

She has not been cheating. In fact the thought of something damaging her body terrifies her. She's very health conscious. But at the same time she's angry and doesn't want to eat the new food. "Nobody wants to start 6th grade being a freak!" :(
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#5 kelly79mass

 
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Posted 29 July 2012 - 08:11 PM

Being diagnosed with Celiac Disease rough and the learning curve is very tough - no matter what the age. Transitioning to gluten-free is not easy -- there will be many days of frustration and even tears.

In time your family will find replacements to all of her favorite foods. For now I'd suggest you figure out how to make some of her favorite meals gluten free - search those foods in this forum and you should find ways to replace them.

Time will bring knowledge along with improved health - for now hang in there, let her be angry while reinforcing the fact that gluten-free will improve her life and know that many others have gone through this transition and are here ready and willing to help your family.


Thank you so much. That means a lot. There have already been lots of tears!
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#6 Adalaide

 
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Posted 30 July 2012 - 08:19 AM

I was moody and angry and I'm 34! I also didn't just go gluten free literally the day I got the news, I got information first. This did two things for me, it gave me time to start to come to terms with things and to pig out on a few of the things I'd never have again and it gave me a chance to get ready and prepared and learn what I could eat. It is okay for her to be mad, it is okay for her to be sad, it is okay for her to feel however she needs to feel right now.

I agree here that family support will be helpful. She is only going to be more angry and resentful if you decide to order pizza for the family and give her some gluten free replacement. There are good gluten free pizzas, but it will take time to find them and there will be many disappointments on the way. Check out some of the meal threads in the cooking or baking or whatever area here and you'll find lots of great ideas for the whole family. I promise that none of you will be feeling deprived. It's a learning curve for everyone, and it's easy to be discouraged but you'll all get the hang of it and before you know it it won't be a big deal any more.

Since she's young and I remember I ate everything in sight at that age, snacks on the go may be a good idea. Fruity and Cocoa Pebbles cereal bars are gluten free, as are the cereals. I also like Kind, larabar and Trio bars which are all significantly more healthy but not quite as fun. If you have a Costco, I pick up lots of these these sorts of things there. I also try to keep fresh fruit and veggies on hand to snack on. I personally happen to be a dipper, Kraft will always list gluten sources but a call to a manufacturer will clear up any question about gluten content. I'm sure the dietitian will help get you on the right path.
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#7 GottaSki

 
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Posted 30 July 2012 - 09:10 AM

Just read adalaide's post and thought I'd add a very easy treat:

Cocoa Pebbles Treats -- Rice Crispies have gluten (there is a new gluten free rice crispie, but my kids like the pebbles treats much better)

Cocoa Pebbles (recipe on the box)
Kraft Marshmallows
Butter
Optional: Cinnamon

Tons of sugar in these, but they are one of my teens along with their gluten eating friends favorites -- easy to take to parties to share with friends too :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 bartfull

 
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Posted 30 July 2012 - 09:21 AM

Kids at 11 are SO self-conscious! The comment about looking like a freak if telling. I think she is more concerned with how her classmates will see her than she is about giving up gluten. Somehow you have to get her to see herself as a normal kid who just happens to eat differently. Point out to her that she doesn't LOOK any different, that she doesn't TALK any differently, and that NO ONE is going to think of her as a freak.

Are there any of her friends who live nearby? Maybe you could encourage her to have a sleepover with a bunch of friends before school starts. You could serve a menu of nothing BUT gluten-free foods so her friends could see that she is eating some fine and tasty things. They might even find that her gluten-free foods taste BETTER than what they normally eat. And getting THEM used to her new diet might go a long way toward easing her fears about the upcoming school year.

I wish you and her the best. This isn't easy for any of us, but for a sensitive 11 year old, it must be worse. ((((HUGS)))) to you both.
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#9 nvsmom

 
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Posted 30 July 2012 - 07:12 PM

My first few weeks gluten-free were terrible. I was incredibly moody and so tired. I didn't want to move. My poor kids had a grumpy mom... the withdrawl took about 3 weeks to pass. Give her time to shake it, and maybe tell her about the withdrawl... how it's almost like giving up a drug. It could help her cope.

Plus I ate more junk for a while too. gluten-free cookies and chocolate covered gluten-free pretzels. Having treats, for only me, was petty but it made me feel better.

Best wishes.
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#10 Roda

 
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Posted 30 July 2012 - 08:57 PM

My youngest son was angry as well. He didn't like being the different kid and did not think it was fair when others were eating something he couldn't have even if he had a alternative. He was 5 when he was diagnosed. Luckily his kindergarden teacher was a blessing. Because of him and others in the classroom with allergies, the whole classroom was gluten and nut free. It really helped him in the beginning. He is very accepting of it now and will speak up for himself when necessary. He's come a long way from the beginning.

My oldest son will be going into 6th grade next month also. He has been gluten free now almost a year. He is NOT diagnosed celiac. All his blood work has been negative for the past four years and he had a negative scope last year. I decided to trial him due to his life long constipation, belly aches, gas pain/bloating, nausea, and his stalled growth and falling on his growth curve. The results were amazing. He responded very well to the diet. After three months we let him challenge with gluten since we wanted to see what happened. He did have some symptoms after a few days. I had a long talk with him and laid out the reasons why to stay gluten free and the reasons not to. I let him decide what he wanted to do. He decided to stay gluten free(prior to this he was only eating gluten free family meals at home) because he said he felt better and he liked that he was starting to grow. He does not care if he eats differently than the other kids. It has never bothered him.

I think it really depends on the child's personality on how they deal with the changes. They all deal with it in their own way. My youngest needed that reassurance and support from his father and I. Now that his older brother is gluten free he doesn't feel like the odd kid out when he and his brother are at functions together. It did help that Mom was eating the same, but it helped more when brother went gluten free. Maybe it's a kid thing. :P
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#11 kelly79mass

 
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Posted 01 August 2012 - 03:05 AM

Thank you everyone for the replies , hugs and support! She was thrilled with dinner Monday night. We had 1 of her faves bbq chicken. Last night I messed up a gluten free pasta so she had leftover chicken. But she woke me up last night saying she didn't feel well and vomited once. She fell asleep soon after and has been ok since. Why did that happen??

This is really heartbreaking to me. And overwhelming. It is tough trying to stay positive when my husband gets more upset than she does as we find more and more things she can't have. "the kids gonna starve to death!" I have two older daughters who will be tested too but other than my 13 year olds asthma they are both perfectly healthy. Kinda hate to rock the boat. 17 yo has been tryin to cheer her up. Even my 13 yo trouble has too until yesterday " I'm not eating that pasta!" this is what I deal with. I feel lost and alone. Sorry to sound so dire.

Those coco pebble treats sound amazing. I think she will enjoy that, thanks! And the sleepover idea? I love it! I'll bring that up with her today... maybe in a few weeks when we have a few more meals under our belt.

Again, I really appreciate your support. I want my bubbly happy go lucky daughter back. I just want her to be healthy and happy.
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#12 Roda

 
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Posted 01 August 2012 - 11:46 AM

My entire family likes the SamMills corn pasta. I can get a 16 oz package for about $2.50. We have tried many different brands of gluten free pasta and come back to that one. My gluten eating husband even likes it. We used to fix regular pasta for him and gluten free for the rest of us, but he says the Sam Mills tastes fine and it's not worth it to make both anymore. I have served it to my parents and inlaws without complaint also.

It would be better for the other kids and dad to not say anything about the food in front of her. She's feeling upset as it is and that won't help. Of course I know how siblings can be. :P Tell dad that there is plenty for her to eat. I used to get comments from coworkers like "what can you eat? I would starve." I smile a little devilish grin at them. I tell them "do I look like I'm starving?" The answer is no since I'm about 20-30 pounds overweight. ;) Anyway, I like to make things and take it to work to share. One girl I work with loves anything I make. She said I could make poop taste good. :lol: :o

Once you get it down pat, you and she will realize she won't be deprived.
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Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.


#13 kelly79mass

 
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Posted 01 August 2012 - 12:22 PM

lol :) I'll try that pasta, thank u. Sounds like a good price too!
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#14 ChefTiff

 
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Posted 01 August 2012 - 05:49 PM

My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.


I was diagnosed finally at the age of 21 (almost 2 years ago) and it was very difficult dealing with college. My best advice is to help her focus on the foods she can eat, not just the ones she can't. It is very difficult to have health restrictions at any age, but let her know that it is ultimately her choice to tell people of her condition. I have lost jobs due to celiac disease because I went undiagnosed for so long. And I need (according to my GI) 1/3 of my intestine removed because of the damage the gluten has caused. So encourage, encourage, encourage. You are obviously a great parent for trying so hard to help your child. Also, no one will be able to tell she is living gluten-free. I have also noticed that being gluten-free is becoming a fad, very strange I know. So she may find that people think it is cool that she is gluten-free. Also a tip for you, save all receipts for her food. You can fill out a form at tax time and actually get money back on your taxes for the gluten free food you have to buy because it is more expensive than food with gluten. celiac disease is a very costly illness. Check out http://www.celiaccen...-free-products/ for all the info you need for the tax deduction. All meat is gluten free and a lot of chips (frito lays, utz, etc.) are gluten-free without having to be special. Bi-Lo has a lot of products called Amy's that I love. As far as bread goes, I would stay away from the frozen bread at the supermarket and purchase rice flower and help your child bake her own bread. Cooking is a great skill and very enjoyable (ok, I'm biased because I am a chef) but fresh baked bread is hard to beat and tastes a million times better than the $6 a loaf frozen stuff. Hope this helps and good luck!
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#15 parmeisan

 
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Posted 02 August 2012 - 03:08 PM

Something I saw in one of the books I've been reading that was really interesting was this: try to think about your food as special, as in, everyone else wants YOUR special food. It was a tip for raising kids, that if you can get them to think that, you've succeeded; I think it's useful all the time. When I am eating strawberries with whipped cream and everyone else is eating cake, and people keep sneaking some of the extra strawberries... it's because they are jealous of me. :) At 11 she will probably be cynical if you tell her that directly, but maybe you can try to make her notice that whenever it does happen. And it'll happen more and more often as you get experienced making great gluten-free meals and treats. :)
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29 years old
Migraines my whole life
Diagnosed Anemic in ~2003
Diagnosed GAD in ~2005
Non-ulcer stomach issues in ~2006
Major acid reflux issues in 2012
Positive blood test for Celiac in 2012, biopsy scheduled




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