Jump to content
  • Sign Up
0
LJ_Mom

How About Some Positive Stories?

Rate this topic

Recommended Posts

My 18 month old son is suspected to have Celiac and every time I come to this site, or go to the internet I end up in tears. Every story is about how kids are having a hard time, or schools are being difficult, or doctors are not helping. How about sharing some stories about how your children are handling this well, how they're doing great in school, playing sports, eating an occasional meal out, going on vacations.

I understand the need for support in the hard times, but I think sharing some of the triumphs would lift a lot of spirits.

Thanks.

Lora

Share this post


Link to post
Share on other sites

I think the best part of my daughter being diagnosed is she is finally not in pain all the time.

I thank my lucky stars every day that this is what she has. Considering some of the horrible diseases out there, we consider ourselves blessed that she has something treatable by diet alone. No it's not easy, but it is manageable. We have learned to forgive ourselves when we make a mistake and the occassional glutening makes us realize how far we have come.

Challenges are a part of life, this will be just one of hers and may help her deal with others as she grows up.

Hang in there, it is hard at first, but does get easier and the outlook is quite positive.

Share this post


Link to post
Share on other sites

My sons were diagnosed in the fall. My oldest showed immediate improvement on the diet (he's 4). He does great. I've only seen a few sad faces (one over no hot dog bun and another at a brownie at a play date). Otherwise, he asks if it's gluten-free, accepts the diet and loves all our baking experimetns! :) My middle child (just turned 3) hasn't responded as quickly but it's still very noticeable. He's eating more (the other less). Both have gained weight and inches, are perkier, more energetic. Mine are young so no school stories. We're homeschooling anyway. We've eaten out twice but honestly, it is so much easier to do here at home. One reason is that I'm more restricted than they are (gluten-free, casein and soy free too). We've been starting to go to a play group again. It's a lunch group so it gets a bit tricky - as far as other little ones eating and carrying food around. This is new for us so we're still feeling our way around. Spring is coming on so our group will be splitting off (meaning one morning is play group, not just lunch). Also, I went gluten-free a few weeks ago and feel AMAZING now. Wanted to throw that in there since I can't fully experience my own children's healing other than observation!

Share this post


Link to post
Share on other sites

Oh my gosh, we have success stories! I probably won't get through much because I'm trying to get dinner ready, but I'll at least get started!

Our biggest success - our son is healthy! And there was no chemo, no radiation, no "this may come back", no nothing! Now he plays sports (and pretty well I'd say, but I'm a wee biased), plays the piano beautifully, gets straight As, has an awesome attitude on life, has a great deal of empathy for others with disabilities, illnesses, etc., is incredibly happy and well balanced. As a parent, I could not ask for anything better.

We've also grown much closer as a family over the past two years. Meal times are a bigger deal now. We don't just eat "conveniently" or quickly all the time. My son and I joke that the two of us have become food snobs because only the best tasting food will do! We do fun things like pizza and a movie night every week, theme dinners like our luau in the middle of winter seafood night with crab legs, or just the experiment gone right night! We always ate together, but it is just different now.

Vacations - we LOVE Disney and have become very attached to the chefs there. Chef Karen and Chef Bruce at Spoodles at the Boardwalk actually know us and have gone out of their way to make eating a special treat for our son. In fact, the majority of the chefs there have done that.

Eating out...well that isn't one of our strongest points, but there is a restaurant owner in our little town who also can't have gluten and we've become such good friends of her and her family just by frequenting their restaurant that we actually spent Christmas day with them! We've met so many wonderful people because of Celiac that we never would have.

We try very hard not to see Celiac as a big deal. It just is what it is and we make the best of it. OK, I better run. I have a new banana bread recipe in the oven and I'd hate to burn it!!!

Can't wait to read everyone else's happy stories!!

Share this post


Link to post
Share on other sites

Hi there,

My 6 year old was dx Celiac in Jan 09. He had basically stopped growing, and at 5 1/2 he was the size of a just turned 4 year old. Other than that, not many symptoms. Anyway....can't lie...the first 3 months were hard (he was 5, and at the time I had a 3 & 2 year old). Almost immediately though, we started telling our son, his siblings, and ourselves what a blessing it was that he was not sick, that this was just completely treatable with a change of diet. Our new motto was "FOOD IS JUST FUEL". And we have ALWAYS focused on what he CAN eat, not what he CAN'T eat.

He has adjusted beatifully. A lot of that is his personality, for sure, and he was just at an age when he got his dx that I could include him in everything, including a positive attitude as I knew that he was watching my every move! He is very take charge of things, and his stomach had been hurting enough that he felt better almost immediately.

The very best news was that in 10 months of being gluten free, my son grew 3 inches!!!! That is more than he had grown in almost 2 1/2 years!! He is healthy, thriving, and, most importantly, happy to be gluten free as he never wants to go back to feeling as bad as he apparently did before. We've had two accidental glutenings in 13 months and he was reminded of the importance of due diligence :o)

My 4 year old son continues to test negative, and my 3 year old daughter had the genetic test due to being IGA deficient and shows 1 in a million chance of being Celiac in her lifetime. My husband and I are also both negative. We keep a 90% gluten-free home...the kids all eat gluten-free in the home, dh and I eat mostly gluten-free but will occassionally bring take out into the home and have never had a problem. The two other kids are allowed to eat gluten outside of the home.

Over all, I can say that it has been a very positive experience once we got used to the diet, and oh my goodness.....to see your child HEALED...to feel good, to be thriving and growing...it brings tears to my eyes seeing how far he has improved in the last almost 13 months!! Staying positive in front of your children is one of the best things you can do for them!

Good luck and best wishes to you and yours!!

Share this post


Link to post
Share on other sites

Oh my gosh, we have success stories! I probably won't get through much because I'm trying to get dinner ready, but I'll at least get started!

Our biggest success - our son is healthy! And there was no chemo, no radiation, no "this may come back", no nothing! Now he plays sports (and pretty well I'd say, but I'm a wee biased), plays the piano beautifully, gets straight As, has an awesome attitude on life, has a great deal of empathy for others with disabilities, illnesses, etc., is incredibly happy and well balanced. As a parent, I could not ask for anything better.

We've also grown much closer as a family over the past two years. Meal times are a bigger deal now. We don't just eat "conveniently" or quickly all the time. My son and I joke that the two of us have become food snobs because only the best tasting food will do! We do fun things like pizza and a movie night every week, theme dinners like our luau in the middle of winter seafood night with crab legs, or just the experiment gone right night! We always ate together, but it is just different now.

Vacations - we LOVE Disney and have become very attached to the chefs there. Chef Karen and Chef Bruce at Spoodles at the Boardwalk actually know us and have gone out of their way to make eating a special treat for our son. In fact, the majority of the chefs there have done that.

Eating out...well that isn't one of our strongest points, but there is a restaurant owner in our little town who also can't have gluten and we've become such good friends of her and her family just by frequenting their restaurant that we actually spent Christmas day with them! We've met so many wonderful people because of Celiac that we never would have.

We try very hard not to see Celiac as a big deal. It just is what it is and we make the best of it. OK, I better run. I have a new banana bread recipe in the oven and I'd hate to burn it!!!

Can't wait to read everyone else's happy stories!!

Share this post


Link to post
Share on other sites

My daughter has been gluten free for almost three years now. Each day it gets easier. She has found a ton of restaurants with food she can eat, we have great recipes for almost all her favorite foods, she is resolving many of the other health issues that accompanied the celiac diagnosis, she has been free of the terrible pain for almost three years, she is more tolerant of others, has a greater sense of appreciation for what she does have and can do, and gives back to others. Last week she won a college scholarship for her community service; she has logged more hours of community service than any other student in her high school and loves what she does; she was accepted to her first choice college, Wake Forest, and the nutritionist there has already set things up for gluten free students and is actively soliciting our suggestions to make things easier for my daughter. I am just thrilled at the school's response to her needs.

Joanna says that in some ways there is a silver lining to all she has gone through in that she has become more compassionate and more accepting. She always was a sensitive and thoughtful child, but she has matured into a wonderful person, and all of her experiences, good and bad, have contributed.

You will have some ups and downs, but it all will get easier as time goes on and as you learn to navigate this and as others become more familiar with and more adaptable to celiac.

We just had a great new pizza place open nearby offering gluten free pizza and beer. First pizza in three years!!

Share this post


Link to post
Share on other sites

My 18 month old son is suspected to have Celiac and every time I come to this site, or go to the internet I end up in tears. Every story is about how kids are having a hard time, or schools are being difficult, or doctors are not helping. How about sharing some stories about how your children are handling this well, how they're doing great in school, playing sports, eating an occasional meal out, going on vacations.

I understand the need for support in the hard times, but I think sharing some of the triumphs would lift a lot of spirits.

Thanks.

Lora

Im 14 and went gluten free this August. My headaches, stomach aches, and constipation went away. Plus i gained back the unexpected 20 lbs i had lost. I run track and cross country, and I got 2nd place in one of my races, out of about 50 girls!!!

My birthday was Friday and Saturday night we went out to dinner with no problem, I had steamed veggies and rice, no butter. I also have had great success at olive garden(yummmmmy too)

Hope everything goes well with you!!!!!!!

Share this post


Link to post
Share on other sites

My son was dx almost 6 years ago now...here's the happy news

1. he grew a million inches, and has never been sick again

2. his teachers and schools have been, without exception, willing to accomodate him and help him have uneventful days --- from the treat boxes in elementary, to his own microwave in his teacher's room this year

3. he's learned independance, advocacy, and compassion in ways that have made him a phenomenal young man

4. his friends don't care what he eats. At all.

5. he's gone to Scout camp, trips with concert band, and away football games. You learn to make it work

6. he loves to cook. what woman isn't going to want him for life?

7. we have parties and go to them. his friends either learned what he could have safely, or he learned how to read labels. we only throw gluten-free parties.

8. His doctors have taken it upon themselves to be more celiac-educated, on his behalf.

His life is good. Our life is good. Yours will be too

Share this post


Link to post
Share on other sites

We also have many happy stories. There will always be frustrating events at school or with family, but overall life is great. I was very sick and it took 3 years to get a diagnosis. When our baby was constantly crying, diaper rash, hungry, not growing, we knew the problem. She is also gluten-free. We also have other food allergies too. It's hard, but we make it work.

The kids go to friends houses, parties, school functions, sporting events, etc.

They play on sport teams all year long. Very active and bring their own foods.

We go out to eat more often than I'd like to admit. We have a list of local restaurants that are safe for us.

We take car trips and plane trips.

We go to amusements parks. LOVE DISNEY!

Overall, we turn down few events or invitations soley because of the allergies.

The baby has grown well. She is doing great in school. So she knows what gluten does to her and does not cheat. It may be scary to start out on the diet, but in a month you will feel much more comfortable with the gluten-free lifestyle.

Share this post


Link to post
Share on other sites

I just met some friends of my parents. This couple has 4 boys. One was diagnosed with Celiac Disease (via endoscopy) when he was just 6 years old. He is now 28, healthy, and married.

For some reason that information just really blew my mind. I've only gone through this for 3 years now. I have had all the advantages of current medical knowledge and advances, all of the gluten-free products readily available to me, and this forum with it's veritable phlethora of info and support.

These people, parents of this little boy 22 years ago, probably had almost nothing compared to us. I'm amazed at the accomplishment they acheived. If they could do this, I think it should give us all assurance that yes, it can be done.

best regards, lm

Share this post


Link to post
Share on other sites

I think one of the biggest successes was that my daughter was diagnosed in the first place. With my own new diagnosis on top of that, we put the whole family on a gluten free diet, and suddenly, my son (who had tested neg. for celiac) has improved immensely too, both his health and his emotional issues.

It is such a gift to go through a day and neither of my children are weeping for over an hour from the smallest little issue.

I really thought they would have a problem with the diet (they were 7 and 11 when we went gluten free) We had to take out a bunch of other foods on top of the gluten, but they have stepped up to the challenge with amazing grace and strength. It really awes me sometimes when I see what foods they are willing to try, and how interested they are in learning how to make everything 'from scratch'

And it's helping others in our family too, because now they nag their grandfather about what risks he's taking. He's celiac too, but he hasn't been adhering to the diet like he should. Now his grandkids know just when he's 'cheating,' and they call him on it every time. I think this might be the only thing would have made him change his behavior, and I am very happy to know that he will be with us longer because he's now taking care of his health, too!

Share this post


Link to post
Share on other sites

My two girls, 6 and 3 were dx 3 years ago, a year after my dx. My oldest has finally started growing again! The year prior to hear dx she had only grown half an inch in the entire year and had not gained any weight. She started kindergarten this last fall and the school we enrolled her in has been very supportive. The teacher even threw away all of the class play-doh, which was made with wheat, washed all of the toys used with the doh and then purchased all new gluten free doh for the entire class. I have a fantastic bread recipe and make fresh bread twice a week for her school lunches. Since no one can tell be smell or taste the difference with her bread, she doesn't feel left out or deprived as compared to her classmates. We also just celebrated birthdays. Both of my girls had birthday cakes, and all of their friends gobbled up their pieces never knowing it wasn't "real" cake. It gets easier every year. My family has found that having celiac disease has actually been a blessing. There is less eating out, no fast food, and we all get together in the kitchen to come up with a new pastry, or just to make dinner.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

×