DD tested positive for celiac disease... reaching out to gluten-free moms...

DD, almost 6, has been having GI issues and we've done a bunch of tests and finally a blood test showed she most likely has celiac disease, they're doing an endoscopy to confirm but her numbers make it a pretty sure thing

I burst into tears when I found out... I know this isn't a life-threatening disease but I got really sad thinking that she'd be one of those kids that has to have different gluten-free treats than the other kids in a classroom, that she would have to bring her own food to slumber parties, that travel will be tough for her, etc.

I know parents deal with food allergies all the time and it's something you get used to dealing with, so I'd love to hear from other Mom's that "it's no big deal"

Re: DD tested positive for celiac disease... reaching out to gluten-free moms...

On a daily basis, it is really no big deal.

I think we were at a slight advantage because my daughter was "diagnosed" around 2 years old, so she doesn't know any different. But i can tell you in the last 3 years it has gotten much easier to do normal things - like eat at restaurants, etc. I mean fast food is a little rough, but we don't eat that anyway.

Yes, she will have to bring food to birthday parties, and her own treats to school. But there is NOTHING wrong with being different, and I think as parents it is our job to emphasize that, for our own children, and tolerance towards other - that part is really no big deal. The more that WE make it no big deal, the easier it is for them. That being said, my daughter is 4, headed to kindergarten next month, so who knows how I'll feel then, but so far she's been ok in Pre-K.

Be grateful it's not an IgE allergy, but of course it's ok to be upset. Of course people have it worse, but that doesn't negate that your daughter has an autoimmune disease that, if left untreated, can lead to serious complications and illnesses - something many people don't know.

I think the hardest thing is changing habits. Changing daily snacks, etc. But there are literally endless GF options out there. Feel free to reach out with any questions.

Re: DD tested positive for celiac disease... reaching out to gluten-free moms...

My son has celiac's as well. He was diagnosed at 2.5 years old... his bloodwork came back through the roof for testing positive. The GI also wanted to do an endoscopy to confirm, but the blood test was good enough for us, plus there is family history of celiac's on my DH's side.

I know it probably feels overwhelming at first but it does get easier over time. I know what my DS likes and GF items are readily available in stores. Stuff my DS likes are GF waffles, PB & J on GF bread, GF pretzels (snyders makes them and I get them at Target) veggie straws , honey nut chex. He mostly eats proteins for dinner. He loves fries although I have to watch out because most places they are not really GF.

ETA I do have to send in my own stuff for him when he has in class bday parties and things like that (he is 4 and goes to a pre-k). Fortunately he hates sweets so cupcakes and cakes are never really a problem for us although they do sell GF cake/cupcake mix at Target that I have made before.

Message edited 8/19/2016 2:46:00 PM.

Re: DD tested positive for celiac disease... reaching out to gluten-free moms...

Thanks ladies, your words really help. Do you guys know of a good website that goes over smart choices groceries, restaurants, etc. ? The information I've found, so far, is all over the place...

Re: DD tested positive for celiac disease... reaching out to gluten-free moms...

Re: DD tested positive for celiac disease... reaching out to gluten-free moms...

Here's another FB group that someone added me to when my DD was diagnosed

https://www.facebook.com/groups/195176573864162/

Re: DD tested positive for celiac disease... reaching out to gluten-free moms...

First of all many hugs! My son will be 6 next week and was diagnosed almost one year ago now.

I cried for weeks.. It's funny.. people made us feel like we were over exaggerating.. Like being diagnosed with Celiac wasnt nearly as big a deal as being diagnosed with an "Actual allergy" These comments were SO hurtful in the beginning. Unfortunately many people have NO IDEA what it means to have Celiac and have to avoid gluten.. versus people who choose to eat gluten free.


It's a complete change for your family but honestly... like everyone says it does get easier. A year later, we are doing great! The hardest part in the beginning was explaining to my 5 year old that he cant have McDonalds as a special treat anymore :( But since then we have found plenty of places ( we are in Nassau County South Shore) we can eat safely... Red Robin! Old Westbury Diner! Cafe Formaggio! Bare Naked Bakery. Allie's Gluten Free Goodies! We are able to do all our shopping at Stop and Shop and Target without a problem!

It's been almost a year now since DS was diagnosed. he had no GI symptoms. Routine blood work at his 5 year old check up showed he was severely iron deficient. His tests were off the chart for celiac. We did an endoscopy day before Kindergarten to confirm.

It gets easier. DH and I were devastated when DS was diagnosed. A year later, my son is doing so unbelievably well. We have taught him to read food labels to look for wheat, gluten free etc. He is so knowledgeable about it and does great. This year we did a plan with the school and he is going to be able to buy lunch a couple times a week.
As a parent... I'm forced to be on my game all the time. Making sure he has GF goodies for bday parties.. etc. But I consider myself lucky because I have a very easy going kid.. at this point anyway. He think it's cool he gets stuff the other kids dont at the birthday party.
Sometimes he will say to me he hates Celiac.. I know it's not easy I tell him, but it's what's best to keep him healthy. He's such a great kid

Please please please feel free to PM me. I have to say that when my son was diagnosed a friend of a friend had me chat with another mom whose child was diagnosed and i learned so much from her! Would love to pay that forward with you... seriously that mom really helped us!!

Re: DD tested positive for celiac disease... reaching out to gluten-free moms...

Re: DD tested positive for celiac disease... reaching out to gluten-free moms...

my DD was just diagnosed a few weeks ago as well, she's 5. she never had an GI issues so it makes it harder to teach her that she cant have gluten. she started calling it "gluten free-itis" and she asked me the other day when her "gluten free-itis" is over . i was like ummm never.

anyway at home it has been totally fine. we are experimenting with replacement foods and getting her to eat some new diff things, more veggies, etc. its not bad.

went to our first bday party since the dx yesterday and luckily the party place ordered a gluten free pizza. i was worried about that cause i didnt plan well to bring things for her other than snacks. i did bring other "sweet snacks" for when the cake came out. i was worried about that but she seemed ok with it and told me she liked her sweet snacks.

im a little concerned how it will be with school starting. new school (kindergarten) and lots of changes. so we will all have to adapt. its def a lot harder to just "go out" as we have to plan ahead now and have a limited amount of options outside the home. but thats life i guess. we will do what we have to do. overall its really not as bad as i was expecting. just takes more planning which is hard for me cause im a free spirit.

good luck!!

Message edited 8/22/2016 11:36:11 AM.

Re: DD tested positive for celiac disease... reaching out to gluten-free moms...

Thanks! This really helps everyone!

Out of curiosity, did anyone's Dr. recommend siblings get tested after a positive test for one of your children? My son has zero digestive issues but it seems like so many with celiac go untested for so long....

Re: DD tested positive for celiac disease... reaching out to gluten-free moms...