Frustrated

[LexsMama]

So last week my son was diagnosed w/ celiac and I understand its not the worst thing in the world and that are people who have children w/ awfuul disease's but does that mean I can never have a bad day. Does it mean I can never be sad that my 15 mnth old baby has something wrong with him? It really bothers me that my friends are like eh its no big deal. It is a big deak to me @ somepoint yes this will all become second nature but right now its difficult. Taking my kid to play with other kids is stressful packing meal making sure he only eats his snacks, plus now we are gonna add in physical therapy. I'm sorry I am done whining now

[jerseyangel]

My dear, you can come here and whine anytime!

It is hurtful when people try and minimize something that we're going through--if they would stop and think for a minute they might realize just what a life-changing adjustment this diet is for a child, especially. It gets better, but the learning curve is a steep one.

While it's true that things could be a lot worse, that doesn't mean that sometimes this is a pain in the butt and some days are definitely going to try your patience and it doesn't mean that this isn't difficult for you.

Best of luck to your little son--you're a great mom

[seezee]

So last week my son was diagnosed w/ celiac and I understand its not the worst thing in the world and that are people who have children w/ awfuul disease's but does that mean I can never have a bad day. Does it mean I can never be sad that my 15 mnth old baby has something wrong with him? It really bothers me that my friends are like eh its no big deal. It is a big deak to me @ somepoint yes this will all become second nature but right now its difficult. Taking my kid to play with other kids is stressful packing meal making sure he only eats his snacks, plus now we are gonna add in physical therapy. I'm sorry I am done whining now

My daughter was diagnosed a month ago and I fell apart. I worried about her dating (She is 10) and all kinds of other things. Food is such a huge part of any social gathering. Trying to keep it away from a toddler is rough. They put everything in their mouths. I had to take her away from her best friends birthday party in tears when they served the cake about a week after she was diagnosed. Let them try to go to a grocery store and see how many things are off limits. I think people really think they are being nice when they say "Oh it could be worse" instead of saying "I am sorry this happened what can I do to help out?"

[LexsMama]

thanks. For the most part i am ok but today was rough he wanted to share snacks with his friends like he wouldnormally and he couldn't and i just came home and cried, we dont live in the biggest area so its hard to find gluten free food and to just be made to feel like your kid is fine quite whining.

[sistertgf]

Being diagnosed celiac is a big deal. When I was diagnosed almost 7years ago, I cried for 2 days. Changing your diet is a lot of work for anyone. You have a lot of support here and I would like to invite you to twitter. There is a lot of Gluten Free people on there who would love to give you support. Take each day as it comes and know there are those of us pulling and praying for you. Be Blessed!

[ptkds]

It is a big deal. Try to ignore them and do what u need to do for your child. My husbands family is the same way. One of my kids doesn't sweat (plus celiac and 2 bleeding disorders), and they keep downplaying that and saying that she is fine and that we shouldn't be so worried about her.

You do what YOU need to do for your child and ignore what they say. I know it's hard, but you have to try. This disease does change EVERYTHING. I have 3 daughters with it, and sometimes I think about their weddings, and all the other events in their lives where food is involved. Celiac affects everything.

You are not alone. Just stick to your mommy instincts and do what needs to be done for your child. That is what he needs right now.

[ang1e0251]

Your child is lucky to have such a concerned Mom! People just don't get the ramifications of the disease. They never will fully understand. Don't expect them too and maybe you won't be so disapointed in them. I really resented my family not understanding me very well. I'm still pretty sensitive when they make comments that rub me the wrong way. I shouldn't hold them to the same standard that I hold myself, they can't feel the physical problems. I don't think anyone can understand except the Mom of a child with celiac disease. Have you read "Living Gluten Free for Dummies"? The author does not have celiac disease herself but her baby did and she tells how they raised him. I thought that was so informative and it could be an encouragement for you.

In the meantime, hang in there and keep talking to us. We know it's a big deal.

[LexsMama]

i havent read the gluten free for dummies but i was looking into buying it. I have to say that since going gluten free my stomach problems are one now too and I feel a lot better. I agree that the ramifactions from nt ensuring my son stays on his diet are very dangerous. My husband at fist didnt quite understand how serious it was but he is a good daddy and went and read up on things and is all about doing whatever it takes to keep our son healthy.

[Pattymom]

Both things are true, there are much worse things and it does become second nature and it doesn't mean a life without cookies and donuts, but it is a big deal and even when it is second nature, there are still times when it is really hard and unfair, expecially for a child to not get what everyone else has. My 13 year old is really struggling being different and not wanting to call attention to himself, and why does it have to be this way. and Yeah, he's right. I cry for him too, I also make him brownies.

Hang in there, and know that many of us understand the need to have all the feelings.

Patty

[TiffLuvsBread]

Would your friends still tell you to quit whining if he had a peanut allergy??? No, they would not. It is the same thing (in terms of not being able to eat it without a physical reaction) and that is all that matters!

Good luck and keep your head up, if anything for his sake. He doesn't need to know anything is "wrong" with him, because he will grow up to be a very happy and healthy young man!

[Mskedi]

I think your friends, in their own way, are trying to be comforting. They may be trying to downplay the difficulty to raise your spirits. You, in turn, might still be in the shock/depression stage and not ready for that kind of cheering up. These people are your friends for a reason, and I seriously doubt you would surround yourself with people who do not want the best for you.

Also, having not had to avoid gluten themselves, they probably are not aware of how many bizarre places it's hiding and just how hard avoiding it can be. They may also not understand that ingesting just a little can have terrible effects on your son. That is ignorance, not insensitivity, and can only be alleviated by you sharing what you are learning.

Let them know you need support and maybe even a little commiserating here and there (though be careful of wallowing in the commiseration -- it can be seductive and dangerous). There's nothing wrong with telling your friends what you need -- that's why you have friends, after all.

There are a lot of things to worry about, granted, but there are a lot of good things about your son's early diagnosis, too. For one, he won't be in pain or suffer any internal damage during his early years. For another, he will grow up learning about his restrictions, will not miss what he never had, and will probably get a handle on the gluten-free diet at a younger age than anyone diagnosed after they have had free reign on their food choices. For yet another, he has been diagnosed with something that can be controlled by diet -- he doesn't have to spend his life on medication or undergo numerous surgeries as some other children with health problems do. Perhaps it is these good things that your friends are choosing to focus on while you are still worried (understandably) about there being something wrong with your son. It is likely much easier to move onto the positive side of things when it is not your own son you are worried about.

Now, I may be giving your friends too much credit, but I've found that giving people the benefit of a doubt is a good thing when trying to repair relationships. Good luck with your son's health and with helping your friends understand what you and he are going through.

[LexsMama]

I think your friends, in their own way, are trying to be comforting. They may be trying to downplay the difficulty to raise your spirits. You, in turn, might still be in the shock/depression stage and not ready for that kind of cheering up. These people are your friends for a reason, and I seriously doubt you would surround yourself with people who do not want the best for you.

Also, having not had to avoid gluten themselves, they probably are not aware of how many bizarre places it's hiding and just how hard avoiding it can be. They may also not understand that ingesting just a little can have terrible effects on your son. That is ignorance, not insensitivity, and can only be alleviated by you sharing what you are learning.

Let them know you need support and maybe even a little commiserating here and there (though be careful of wallowing in the commiseration -- it can be seductive and dangerous). There's nothing wrong with telling your friends what you need -- that's why you have friends, after all.

There are a lot of things to worry about, granted, but there are a lot of good things about your son's early diagnosis, too. For one, he won't be in pain or suffer any internal damage during his early years. For another, he will grow up learning about his restrictions, will not miss what he never had, and will probably get a handle on the gluten-free diet at a younger age than anyone diagnosed after they have had free reign on their food choices. For yet another, he has been diagnosed with something that can be controlled by diet -- he doesn't have to spend his life on medication or undergo numerous surgeries as some other children with health problems do. Perhaps it is these good things that your friends are choosing to focus on while you are still worried (understandably) about there being something wrong with your son. It is likely much easier to move onto the positive side of things when it is not your own son you are worried about.

Now, I may be giving your friends too much credit, but I've found that giving people the benefit of a doubt is a good thing when trying to repair relationships. Good luck with your son's health and with helping your friends understand what you and he are going through.

Im sure you are right I was just having a rough day and sometimes its hard when we donthave health food stores to go buy gluten free foods where I am from so grocery shopping is really frustrating

[MaryannG]

My daugther was diagnosed with celiac at 20 months old, 1 week before I was due to have another baby!!! It was very stressful. Thankfully we have very supportive family and friends. A few times I have been frustrated that one family member refused to try anything gluten-free that we served. I finally said something to him and reminded him this is a heriditary disease and HIS children could just as easily have it one day!!! That put him in his place pretty quickly! It was becoming insulting to me after a while. Anyway, I though you should know that now at 3 my daughter is doing soooo well. In fact she asks all the time if something has gluten in it, we usually say it has gluten YUCK!!! She totally gets it. Just the other day, I handed her the wrong snack and she noticed it was something different her sister usually eats and handed it back to me to tell me it had gluten in it! It is very hard at 15 months when your child was diagnosed because tehy really do want to eat everything, but keeping talking about gluten and before you know it your child will be just as good about it. Another tip, I always call stuff by its real name. For example at first I started saying Perky-O's were cheerios then I realized I wanted her to distinguish between the two incase someone offered cheerios to her instead she would recognize she can't eat that (because I do eat them and she knows she can't have them. Good luck and if you have any questions please feel free to email me personally. I've been through the early age diangosis and it really does get better. Frustrating still, but better!