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Parent To A Newly Diagnosed 7 Year Old

mstroud

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mstroud Rookie
mstroud
Posted

Hello all! I've read many of the posts on this forum in the last 3 months and it's been very helpful. My son (7) was diagnosed 1 month ago with Celiac Disease (through biopsy and blood work). He had been experiencing stomach pain for a year and more recently he also had pain and weakness in his legs and slightly discolored teeth. Although I'm glad that the source of this pain has been discovered, we're not in the starting phases of the gluten free diet.

My son was in such pain before that he was happy to change his diet and has little that he misses. I try to make him 'kid meals' like the gluten free chicken nuggets (he has two younger brothers who get normal ones), gluten-free pizzas, etc. But, today we were at a birthday party and it really hit him hard. For the first time he started bawling because he wanted the pizza. I'd packed his lunch and his own cupcake, but he was so upset about the pizza. It truly broke my heart. I know he just wants what his friends have and he's a smart child who understands that he HAS to watch what he eats carefully. Even so, I don't want him to miss out on parties and, as much as I can try, I can't always provide him a gluten-free version of what his friends have.

Sorry ... can you tell I'm new and need a good venting session?? I'm guessing this is all very normal and I really hope it'll get easier on him. I'm trying to get more snacks for all of us in the house that are gluten free.

Do other parents have ideas for how to make this an easier experience for him and all of us??

Thanks in advance - Margaret

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dandelionmom Enthusiast
dandelionmom
Posted

I'm sorry to hear he had a bad day. It is hard feeling left out sometimes.

One thing that seems to help is to bring your child's favorite snack (maybe even something that will look so good to other kids that they might ask for some). Like if you bring him his own cupcake, cover it with M&Ms so it is super delicious so much so that he doesn't miss the cake.

Breila Explorer
Breila
Posted

Margaret,

We met recently at the local Celiac meeting, nice to see you here. I have a 7 yo son too.

It is really hard to feel left out, so far we've been really lucky that there has only been one birthday party where pizza was served and he had to bow out. Every other event I've managed to provide a gluten-free version of what was being served, and he's been okay with that. I keep the makings for pizza and stuff on hand all the time now after I received less than a day's notice that there would be a pizza party at the school once, LOL. We've found great recipes and mixes for breads and baked sweets too!

The hardest part for us so far has been school. Often I receive limited notice of special events planned and have to scramble to get things together. This week they are having a Chick Fil A nugget party, and for whatever reason, they can't provide him with a grilled piece from there, so I'll end up getting it and taking it to the school, :rolleyes:

I do try to keep the majority of the snacks in the home gluten-free, and I avoid his old favorites that he can't have any longer altogether. That helps a lot at home.

I know we're on opposite ends of the county and gas prices are kind of prohibitive right now, but if you'd like to get together with the boys sometime, I'd like that.

cruelshoes Enthusiast
cruelshoes
Posted

Hi, mstroud. Don't feel bad about venting, that's what we are all here for. My son is now 9, and he was diagnosed when he was 6. We keep a box of snacks in my son's classroom for unplanned food events, and his teacher emails me when there is a pizza party or something similar coming up so I can provide alternatives. His boy scout group has also been great about including him in the snack events. I think the key to doing this with kids is to plan ahead and always have things that are easy to grab and go (cupcakes in the freezer, individual bags of chips or candy bars). We always have a stash or shelf-stable foods in the car for when we are out and need to eat. We keep an individual sixed pizza of two in the freezer at all times so we can pull it out and take it to a party if needed.

Glad you joined us, and I am looking forward to hearing more from you.

Darn210 Enthusiast
Darn210
Posted

Margaret, sorry to hear your son had a rough time at the party. I think it's to be expected once in a while as he is grieving his loss of favourite/familiar foods. I know I cried for my daughter because I knew she didn't even realize what she was giving up. I try to plan ahead as much as possible and have an equivalent snacks or meals. I have an emergency snack sack at my daughter's school for when something pops up unannounced and it is filled with pure sugar and high fat snacks . . . if she has to have something different, then she will be the envy of the kid's around her :lol:

I get notices from the teachers and school nurse for some of the school events. For the Valentine's Day Party, I found out that they were serving sugar cookies to the kids. Now that's kind of vague . . . were they going to be heart shaped? iced? red sprinkles? So I took in an iced sugar cookie decorated with a pink heart and little flowers, sat it down in front of my daughter to hear the words from a nearby student . . . Is that her cookie? That's not fair!! (The rest of the kids had a plain round sugar cookie). I left with a big grin on my face. :D

I've talked with my daughter (and reiterated myself a few times) to let her know that I will always try to have something for her and that sometimes, when we are surprised by an event, we will have something special later. I think she totally gets it . . . to the point of trying to negotiate a better deal than she deserves . . . "Mom, everyone got to have an Oreo at school today and I didn't get to. Can I have a bowl of ice cream with chocolate sauce and sprinkles?" . . . :lol:

olena Newbie
olena
Posted
Hello all! I've read many of the posts on this forum in the last 3 months and it's been very helpful. My son (7) was diagnosed 1 month ago with Celiac Disease (through biopsy and blood work). He had been experiencing stomach pain for a year and more recently he also had pain and weakness in his legs and slightly discolored teeth. Although I'm glad that the source of this pain has been discovered, we're not in the starting phases of the gluten free diet.

My son was in such pain before that he was happy to change his diet and has little that he misses. I try to make him 'kid meals' like the gluten free chicken nuggets (he has two younger brothers who get normal ones), gluten-free pizzas, etc. But, today we were at a birthday party and it really hit him hard. For the first time he started bawling because he wanted the pizza. I'd packed his lunch and his own cupcake, but he was so upset about the pizza. It truly broke my heart. I know he just wants what his friends have and he's a smart child who understands that he HAS to watch what he eats carefully. Even so, I don't want him to miss out on parties and, as much as I can try, I can't always provide him a gluten-free version of what his friends have.

Sorry ... can you tell I'm new and need a good venting session?? I'm guessing this is all very normal and I really hope it'll get easier on him. I'm trying to get more snacks for all of us in the house that are gluten free.

Do other parents have ideas for how to make this an easier experience for him and all of us??

Thanks in advance - Margaret

olena Newbie
olena
Posted

It's not easy... everytime my daughter is invited to parties, I check with the host what they are planning on serving. You could match the menue with gluten- free foods. And I found that people are extreamly accomadating to kids with special diets. Sometimes they even provide a glutten free brownies or cookies just for her! Don't be afraid to ask!

Also, I recomend to buy Danna Korn book " Kids with Celiac desease". It's been a life savoir for me!

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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