Has anyone had a coeliac infant/ toddler

[Leo1986]

Hi,

Just wanted to reach out to see if anyone has had a coeliac baby or toddler.

My son is currently 16 months and was diagnosed 2 months ago after losing a serious amount of weight, distended belly, lack of interest in any activities along with fussy eating.
He is very sensitive to gluten with TTG greater than 200.
My health visitors told me he was just a fussy eater but mother's instinct made me think otherwise, therefore, I decided to go private and I'm so so glad I did.

Does anyone have any advice with taking your children to other peoples houses etc. I find i get very anxious as my son isn't walking yet and I'm concerned with him crawling anywhere other than home or outside. He literally picks up absolutely anything and everything and puts it in his mouth. I also worry about traces of gluten being on his hands as his fingers are always going in his mouth. I feel it's such an awkward age considering his dietary needs.

Also, how have people dealt with their CD children going to friends houses as they grew up. I worry about this and also children's parties etc.

Cross contamination is an issue and it's worth considering a GF household.
Also you and your DH should get tested - it's a genetic condition so there's a chance and any other DC could have a less severe form

Thanks. We are now a gluten free household and it's not at home I worry about. It's other people's houses, especially whilst he's still crawling.
Yes, myself and partner are in process of being tested. I also am expecting another baby early November and my sons consultant advised he will run the genetic test on this baby too.

My daughter diagnosed at same age. Now 18 years and at uni. Happy to answer questions. It will be fine. Relax.

Thank you @luminosity :) I do have a few questions if you don't mind.

1. How did you manage around the children's birthday parties situation with food? Did you provide your daughter with her own lunch box? Did she feel isolated at all? I worry about this already and my son is now only 18 months.

2. School - was the school your daughter attended understanding and take on board the importance of avoiding cross contamination? Were school dinners ok? Was she given enough variety? I have read a few forums where a child is just given a jacket potato each day!

3. holidays. Can you recommend any destinations you found were particularly good for coeliacs. X

Hi Leo1986,

No problem! Things were a bit different back when my daughter was younger - now Sainsburys/Tesco GF & Marks & Spencer’s are our best friends! 😂

To answer your questions - i always gave my daughter a lunchbox for parties which tend to be a gluten fest. I always called her bread ‘special bread’ and gluten bread ‘ordinary bread’. I used to clear a space for her and encourage her to use her lunchbox as a serving area. I felt early on that I didn’t want the household to go GF. This is a personal decision but for me I felt it was important for her to learn how to deal with the world as it is (a lot of gluten food!). I taught her to wipe away crumbs with a napkin or tea towel then use a new plate / board to do her food. Or use a paper napkin as a plate if in Costa or similar. Birthday lunchboxes always had Nutella sandwiches!! 😂

Schools - at all 3 she had lunchbox. Gave her the option at secondary and she preferred lunchbox still. Her reaction to gluten is very severe - vomiting multiple times. I didn’t think she was missing out on too much!! 😂

Holidays is a funny one! We have gone to St Ives Cornwall every year. My partner credits me with turning it gluten free! Certainly a few places are gf from my influence!!

Hope this helps.

Worth adding being diagnosed so young is a blessing! My daughter knows no different and never had to give anything up. I’m not saying it’s always easy, but it is ok & very doable. You’ve totally got this.