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My Daughter Looks To Have Celiac

Lisa79

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Lisa79 Enthusiast
Lisa79
Posted

Well I was diagnosed 6 weeks ago, both my kids had a blood test and my 4yr old daugher has come back with likely celiac and need to have a biobsy.

I am not surprised as a baby she had tummy problems, and we was told she was secondary lactose intolerant due to many gastro bugs. She has been fine on cows milk since she was two, although we have had problems with her going to the toilet. Some days constipated others really runny poo. So I had knew something was not right.

Although I expected it, it doesn't make it any easier, I am quite upset, I am still coming to terms with the fact I have just been diagnosed and also have been told I have mild osteopenia. So its been a really stressful roller coaster ride for me the last month.

I am scared to tell her, I am scared of taking her for the biobsy as she HATES hosptitals. I am worried about school and how this will affect her and how she will cope, I wish I could be with her 24/7.

How did you cope in the early days? and how did your pre-school age children handle it?

Thanks

Lisa

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brazen20au Newbie
brazen20au
Posted

Hi Lisa, was it you who posted on EB today? lol small world ;)

Lisa79 Enthusiast
Lisa79
Posted
  • Author
Hi Lisa, was it you who posted on EB today? lol small world ;)

Hiya, yep it was me :)

Kibbie Contributor
Kibbie
Posted
Well I was diagnosed 6 weeks ago, both my kids had a blood test and my 4yr old daugher has come back with likely celiac and need to have a biobsy.

I am not surprised as a baby she had tummy problems, and we was told she was secondary lactose intolerant due to many gastro bugs. She has been fine on cows milk since she was two, although we have had problems with her going to the toilet. Some days constipated others really runny poo. So I had knew something was not right.

Although I expected it, it doesn't make it any easier, I am quite upset, I am still coming to terms with the fact I have just been diagnosed and also have been told I have mild osteopenia. So its been a really stressful roller coaster ride for me the last month.

I am scared to tell her, I am scared of taking her for the biobsy as she HATES hosptitals. I am worried about school and how this will affect her and how she will cope, I wish I could be with her 24/7.

How did you cope in the early days? and how did your pre-school age children handle it?

Thanks

Lisa

My daughter is now 4. She was diagnosed at 18 months old. I can tell you that the first month was stressful because of the huge learning curve but since then its been a breeze :) I was actually watching my daughter the other day munching down on a super juicy plum and some cheese while other kids were eating ritz crackers and peanut butter and I realized what a gift celiac disease has been to her... she is such a good eater :)

Every year we celebrate her gluten free "birthday" so to speak. I make a gluten-free cake or pie and we have a nice dinner and she even blows out candles. I focus on the celebration of being healthy and feeling good and instead of making this something that "happened to her" I made it something that she is proud of :)

Knowing what I know today (and I know this sound strange) I might start by telling your daughter with a Gluten free Family party. With a good dinner and some fun activities :) This way it feels like something good instead of something bad. After all it is a good thing she knows, now you guys can work toward being healthy and pain free!

As far as the hospitals go.... you could always opt out and just treat it like celiac disease. If my son ever shows symptoms I'm not going to have the endoscopy done and if I ahd to do it all over again I wouldn't have had my daughters done either.

Rondar2001 Apprentice
Rondar2001
Posted

I have to agree that it is a much healthier diet. My child brings lunches to school that I would not have thought of putting together before.

I love the idea of the gluten free party. I will be 1 year since my dd's biopsy on May 4 and now the ideas are flying through my brain on how to make it a positive experience for her.

Thanks!

lizajane Rookie
lizajane
Posted

my son doesn't even have a diagnosis. he had a negative blood test as an infant, after 2 straight months of D. he hasn't slept all night more than a few times since he was BORN. he is very gassy. he complains of tummy aches. he is much shorter than his brother, (but not short-50th %ile.) he is VERY irritable and stubborn.

when i was diagnosed, we just decided to try going gluten free with him. we will do ANYTHING to get this kid to sleep all night. it has been FOUR years. not only did he sleep all night after 3 days of the diet (he did wake a few nights later, but only once- it has been much better) but he is also a lot more pleasant! he got into some wheat crackers on sunday and woke up THREE times that night and was a BEAR the next day. that is proof enough for me.

he tells people that he can't eat wheat or gluten. he is 4! he turned down an iced cookie at preschool the first day of the diet because "i can't eat wheat." a cookie!!! we have only heard complaints out of him maybe 3 times in the past week and a half.

my other son is very hyperactive and we are going to try it with him, too. he has argued with me about it- mostly because he can no longer have mcdonalds or buy his lunch at school. but the change in dylan (4 years) is enough for me to go for it with schuyler (6 years.) and as i said, i don't need a blood test or a biopsy. i just need the behavior to change!

not to mention the fact that i wish I had started so young!! it is honestly nothing to dylan to ask people if there is wheat in something before he eats it. my husband now only has one loaf of bread, one box of crackers and one box of cereal in the house. (oh, and beer!) he is very happy to be gluten-light to make it easy on the rest of us. the rice pasta from trader joe's is great- we can't tell a difference from wheat pasta. and the trader joe's gluten free brownies are WAY better than any other boxed brownies! really!

mostly, it is expensive to have a gluten free kid. because there are times when i want to be able to hand him a cereal bar (more than $5 for a box of 6) or let him have a cookie (mi-del has great ones!) but most of the time, they get an apple, cheese stick or yogurt anyway.

it has not been NEARLY as hard as i expected it to be. really. and dylan was really, really stubborn. i think he feels better and i think he knows it.

Lisa79 Enthusiast
Lisa79
Posted
  • Author

Thanks so much for the replies, I have began explaining to my daughter that because she has a sore tummy alot and get alot of diarrhea she may be like mummy and have to eat gluten free and explained we are going to see a childrens doctor to find out, we have an appointment with the pead early next week.

I am going to try go ahead with the biopsy, I would rather just know for sure what her intestines are like, even if the biopsy turns out neg, which I do doubt as she has had problems with her tummy since she was a baby, I will put her on a gluten-free diet anyway.

I guess my biggest concern is what food she will eat, she is a fussy eater already and loves polony sandwiches and thats her favorite for school lunches, she is in pre primary now so goes 5 days a week so that will be my most difficult thing. I am trying to start encourage the gluten-free foods now, just changing her lunch box slightly to include gluten-free foods so by the time the biopsy is done I can change her diet.

At home we are already eating gluten free meals. Once the house goes gluten-free my husband will take his loaf of bread and stuff to work and make his sandwiches are work to save contaminating the kitchen. He is happy to go gluten-free at home.

Thanks everyone for the replies.

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