Good News

[Benshell]

I know this may be long - but for all those struggling or just starting out...please read, I guarantee it will make you feel better.

I think back 3 years ago, my daughter's stomache was bloated, she hadn't grown in 10 months, she had dark circles under her eyes, belly aches and BM 5 times a day. When I first got the call from my daughter's doctor saying she tested positive for celiac and I needed to see a pediatric gastrointerologist.....to be honest, I didn't believe her as no one else in the family had celiac. The first thing I had the gastro dr do is do another blood workup, insisting that there must have been a mix up in the lab. Sure enough, it was positive. We chose to skip the endocscopy, going straight to the gluten free diet. Our gastro dr was OK with that, saying he was 98% sure the endoscopy would come back positive anyway, with the outcome being a gluten free diet.

After freaking out, reading every possible book and piece of information I could get my hands on (BTW-thanks all in this group who helped me out), I dove into the gluten free lifestyle for my daughter age 5 1/2 at that time. I treated gluten like raw meat - washing my hands and counters constantly to avoid contamination. I did not buy seperate dishes or pots, but I do have a seperate strainer for pasta (those small holes are just too tricky). 6 months later her bloodwork showed her anti-bodies were within normal range. The doctor was SHOCKED at her progress, saying people always slip up, cheat, contamination, etc.. But was very proud of her (and me) for sticking to it.

After 1 year of my daughter being gluten free, I finally got the courage up to go out to eat with her. I felt, I couldn't have her living in a bubble. So far, we've probably eaten out almost 100 times and she only got sick once and we saw the servers thumb in breaded shrimp before he handed her the food. We made sure to tell the manager about that one immediately.

Anyway - 3 years later, we just got back from the pediatric gastro dr and her #'s are still fine...she looks healthy and is doing just great. My daughter loves being gluten free. The dr asked her - do you ever want to cheat on the diet? She answered "no, why would I want to eat something that is going to make me sick?". I'm so proud of her. I've made sure to teach her about contamination issues, how to read ingredients and what to look for. She is very comfortable googling a company or calling them to ask if their product is gluten free. She even teaches her classmates about celiac and often shares her gluten free snacks with friends.

I know this may not be the norm, but I remember being completely freaked out when my daughter first got the diagnosis. I just wanted to let parents out there know that it does get better. yes, we've dealt with family not being compassionate or understanding, making jokes like "don't touch that fork, it could be gluten". I've had to threaten to cut off contact with family because of that. Luckily, my daughter's school is great (yes, its public). She has a 504 plan where she gets gluten free art supplies (even though she doesn't get a skin reaction to gluten) and she buys a gluten free lunch at school 2-4 times a month (yes, I said she BUYS A GLUTEN FREE LUNCH AT SCHOOL - shocking!). They prepare her lunch seperate from everyone else, all I have to do is give them a heads up a week ahead of time. The school nurse keeps her snacks for class b-day parties and the school even offered to reimburse me when they made gluten-free gingerbread houses and I supplied gluten-free supplies for my daughter.

I feel I'm probably jinxing myself by posting this. But I wanted those parents out there that are scared, struggling to know that it gets better and easier. You start with the flourescent stickers on the gluten-free food in the fridge and before you know it, you're making gluten free thanksgiving for the whole family!

Please feel free to respond and ask questions. I just ask for no negative comments...I know some parents are going through a lot worse, dealing with other issues as well (my daughter has no thyroid) and I always think of you when times are hard with my daughter. Good luck to all of you.

[rosetapper23]

Your post is so very positive and heartening--thanks for sharing your story!

[Bubba's Mom]

Thanks for sharing your story! I'm glad that you and your daughter adjusted to the diet so well.

It's heart warming to know the school is so helpful too.

[faithforlife]

I can really relate! My pedi GI doc told me what our next year would look like in the first five minutes of meeting him. I'd never heard of celiac. And he was right! I think it's great that you have her calling the food companies! I'm going to start that. I do make them read labels.

[GFinDC]

Congrats on the progress! That's great news and so nice to hear.

[alex11602]

That is wonderful news

[mushroom]

Well done, Mom and daughter. It sounds like you have both handled it very well.

[mamaupupup]

Thank you so much! Our girls are also 5.5 and about to complete our diagnosis of Celiac. We have 10 more days of gluten in our world: our twin daughters will have their biopsies then. The minute we're done at the hospital we will purge gluten from our lives!

I love all the info and tips you shared. And, I'm so happy to hear how the school has responded! I have a few more questions:

- How do you handle day camps and/or after school activities? Did you write or call the director/teachers/etc.? The public school 504 plan is great, just wondering how to interact/inform the other organizations.

- What do you say when you go to a restaurant?

Thank you!

[Benshell]

Thank you so much! Our girls are also 5.5 and about to complete our diagnosis of Celiac. We have 10 more days of gluten in our world: our twin daughters will have their biopsies then. The minute we're done at the hospital we will purge gluten from our lives!

I love all the info and tips you shared. And, I'm so happy to hear how the school has responded! I have a few more questions:

- How do you handle day camps and/or after school activities? Did you write or call the director/teachers/etc.? The public school 504 plan is great, just wondering how to interact/inform the other organizations.

- What do you say when you go to a restaurant?

Thank you!

We're venturing into camp possibly this year. I have the luxury of working from home, so previous summers my daughter did 1/2 day enrichment programs. The first day I spoke to the counselor and explained about my daughter and simply said - it needs to be treated like a severe peanut allergy. I know its not, but it tends to get their attention and usually the counselors are just college kids and only take it seriously if its life threatening. The few camps I've spoke to seem to be very accomodating as they are used to kids with allergies. They've said they will find alternate programming for my daughter when there is cooking, will purchase her pre=packaged gluten free snacks and ice cream. One offered gluten free lunch, but I'm not quite sold on it without speaking to the chef, so I may just send her in with lunch daily. Most of the activities she does outside school don't expose her to gluten. If there is cake for a b-day, she just skips it. Most instructors let me know ahead of time so I can bring an equivelent snack for her.

As for eating out...thats still a really tough one for me - trusting someone else to make her food gluten-free with no contamination issues. Major trust issues here. We started out at Uno's and Outback since they are chain restaurants with gluten free menus. While both offer great food, I found Uno's to be a little more conscious of the contamination issue by having a seperate server wearing gloves bring out the gluten free food. My daughter once got 'glutened' at outback because our server had his thumb in breaded shrimp (while putting the plate down) and then handed my daughter her meal. We've mentioned it to the manager and they are 'working on the issue'. Just google gluten free restaurants wherever you are going and you can usually find someplace. Often, small mom/pop places don't advertise - its word of mouth. So ask around at your local ROCK group or celiac support group. I'll often email a group where I will be visiting months in advance to ask for recommendations of local restaurants. Ask to speak to the manager and explain your child can't have any gluten and they must use clean pots/utensils, etc.. Also, we always go out to eat early. I find the later we go, the busier places get and mistakes are made. So we eat out at 5pm.

Its tough, but it can be done. We eat out about once a month at a resturant and bring in gluten free pizza about twice a month (we have great gluten-free pizza by us). Sometimes you just have to take a deep breath and jump...

[mamaupupup]

Thank you! I appreciate your input and experience very much! How do you deal with people coming to your house--family, playdates, etc. Do you allow people to bring food into your home?

Thanks!

[Benshell]

Thank you! I appreciate your input and experience very much! How do you deal with people coming to your house--family, playdates, etc. Do you allow people to bring food into your home?

Thanks!

I cook ALL of the holiday meals for our family/extended family. However, I started doing this before diagnosis just because of aging parents. I make mostly gluten free dinners and I tell my daughter ahead of time what she can/can't have. She always takes first and takes plenty as I don't want her taking 2nds in case of contamination issues. When we do go to other peoples houses for dinner, I bring her own dinner, usually something comprable to what is being served...or worse comes to worse, Amy's gluten-free mac & cheese is always a quick meal to bring. Some family members will cook, but have been instructed on putting tinfoil on the grill, seperate utensils with no sauce, etc.. I basically explained gluten as "raw meat" whatever it touches must be washed off and if it can't be, its contaminated. They kinda get it. I have a "mixed" kitchen - both regular and gluten-free as my husband likes his wheat. I label stuff like butter and mustard what is gluten-free and what isn't and we use the raw meat example for washing. Seems to work out fine. We even share a toaster over (SHOCKING!)...we just put down tinfoil for anything gluten-free.

As far as playdates go, I feel and most of my friends feel more comfortable with the kids being at my house, just cause I have all the gluten-free food here and to be honest - most of my daughter's friends LOVE her gluten-free food and some of my friends are scared of getting my daughter sick. When she does go over to a friends, I explain to the parent about her celiac and she CANNOT eat anything from her house. I always bring a snack not just for my daughter, but enough for all involved. My daughter knows to serve people so they don't stick their hands in the bag to avoid contamination. She also knows she can always have fresh fruit or carrots if they are washed off in front of her face. There have been times when she'll spend a whole day at a friends, I pack lunch just like school and bring several snacks just in case.

Hope that helps. It gets easier!

[Minette]

Thank you for this. I just got the results of my 6yo daughter's blood test (sky-high antibodies) a few hours ago and I'm still reeling.

mamaupupup, my girls are twins too. They're fraternal. Our other DD has no symptoms whatsoever (nor do DH and I) but we're all going to get tested just in case. Just curious what your experience was?