Toddler with coeliac Post Reply

[Londontownlady]

Hello,

Our daughter (3) has recently been diagnosed with coeliac.

It has been an emotional and traumatic time for us. At the same time I’m pleased that we have a diagnosis so she can get better.

I’ve been reading so much into this but it’s been quite overwhelming to say the least and confusing as it does seem to impact people differently. Some of things I’m reading are also quite worrying.

I was wondering if there are any local support groups near us (we live in Clapham) ... or if there are other parents that are going through this or have gone through this that would be interested in meeting up (when lockdown ends). Otherwise if anybody is willing to share their own experience living with coeliac or has children in the same situation I would love to hear from you.

I’ve joined Coeliac Uk and recently emailed their local group. We have a six month check up in a June but I don’t know whether it’ll go ahead due to Covid-19

Thank you

[Lizzie]

So sorry to hear about your daughter but great that she has her diagnosis as that is often the most traumatic phase. Both my children are coeliac, one diagnosed age 3 and the other age 5. Now your daughter is on the correct diet things will start to improve. The important thing is to be really strict at this recovery stage eg separate butter containers, dedicated slot for her bread in the toaster, avoid contamination wherever possible. The main problem for us was children's parties and playdates where they had to bring their own tea and cake. Eating out was difficult too as almost all kiddy food seems to contain gluten! It's a lot better now though with Pizza Express and other restaurants offering gluten free food. Everyone has been very good though at accommodating my children's food requirements and once I explained that it isn't like a nut allergy ie if they eat gluten by mistake it won't kill them, they'll just feel sick or get diarrhoea, they felt comfortable with it. 

Don't worry too much about what you read. Your daughter has been diagnosed early and is highly unlikely to suffer from any complications. I expect that you will have at least an online/phone check up in June (I would check with the hospital to see if this is the way they want to go). Not ideal but most importantly they'll want to check her weight and height to see if she is responding well to her new diet. You can do that yourself too and plot the results on her growth charts which hopefully will reassure you. 

I'd be happy to meet up for a socially distanced chat any time soon. I live in Balham.

[fanofcats]

Hi

My daughter was diagnosed with Coeliac disease at a similar age (though many years ago now - she is in her early 20's now!) and I went into a period of mourning for the loss of all the foods she would get to enjoy (food and sharing good food has always been quite a thing in my family) which with the benefit of hindsight was not helpful. When they are so little the desire to protect them can easily feel overwhelming so I totally sympathise with what you are going through.  The really good news is that when on a gluten free diet they are fine - with our daughter we saw a changed girl after only about 10-12 days. Literally it was like a different, happy, bouncy laughing little girl woke up one morning and we realised what she had been going through for so long.

I don't know about meet ups locally - we tried Coeliac UK London meetings a couple of times but it didn't work out well for us - but I'd be happy to have a chat and pass on any help I can if that would be helpful.

[Londontownlady]

Hey fanofcats,

Thank you for taking the time to reply! Your msg really resonated with me.. every aspect. I know what you felt when you looked back and realised how much your daughter must have been suffering! I feel so guilty about that.. but also seeing the change and realise how much difference it has made. I started to doubt recently that this coeliac could trigger other things but it sounds from your and Lizzie’s msgs like food has been the only adjustment. And that’s really reassuring. I mean food is a huge part obviously but I think today there is so much more understanding and allowances made. I guess when they are little they don’t know any better.. has your daughter struggled growing up? Or had issues when on holiday? ...I’d be very grateful for any tips or recommendations.. I’m based in Clapham, by the common!

[Londontownlady]

Hey Lizzie,

Thank you so much for your reply, your msg brought me comfort to read it. A mixture of Dr. Google and following some GF Instagram people had me filled with terror to be honest. Ah yes playdates and parties will be tricky.. you must be so organised to coordinate all of that with two young children. I rang the hospital and we are now booked in for a telephone consultation. My daughter has put on weight and grown since diagnosis .. also her mood has improved drastically, she was very tired all the time... she is like a different child. How are your children now with it all? Do they ever ask you about it? ... It looks like more and more restaurants do GF options but I’ve already had an episode back in February when we were out in Richmond and the pub had run out of gf options!
It will be lovely to meet, I live in Clapham Common way so not far at all from you!