Recent diagnosis and totally confused

[Mum1212]

I found out yesterday that my 18 month old DD has celiac disease. She has been noticeably ill for 8 weeks, and after repeated visits to the doctors and hospitals, they did blood tests and we found out the cause of her being unwell.

We are going back on Tuesday for another blood test to confirm the diagnosis, and didn't out the level she has it.

I feel completely overwhelmed, and am fluctuating between anger that she has to deal with this for the rest of her life, and relief that it wasn't something far more serious that was wrong with her.

I have been looking online and I don't even know where to start. There is so much information, and the cross contamination aspects have just completely freaked me out.

I also feel guilty as I have been making her feel unwell by giving her foods that we're making her feel worse. We need to feed her up, as she has had quite a serious weight loss but I don't even know what to.

There are so many questions floating round in my head Do I need to go out and buy a separate chopping board for her stuff? Does she need her stuff kept in a separate cupboard? How long will her gut take to heal? Should I get tested to see if she has got this from me.

Sorry for the long moan. I feel scared that I am not going to get this right and cause her more harm.

Any advice on where to start would be really appreciated.

as far as i know things dont need to be stored in a seperate area for coeliac disease. make sure you are looking at legitimate websites too as some are just hearsay.

My dh and I eat gluten free and our 3 dc don't.
It's not a problem at all.

Don't panic, if she eats gluten free she will be visibly better in no time!

link to the coeliac.uk website

Hope your daughter is better soon.
And don't feel bad about it, she will grow up knowing what is good for her and if you don't make a fuss, she won't see it as an issue.
You'll get into the habit of providing food for her at outings, parties, etc. until she is old enough to know for herself what she can eat.

Sorry, didn't ask your questions
We don't keep our gluten free stuff in a separate cupboard but I would in your case allocate a shelf for her stuff, because it will be easier to see which things you have run out of.
Chopping boards - you would only need separate ones if you chop bread. Any meat, veg or fruit is gluten free.

Your main concern will probably be sauces and processed food, there is almost always gluten in it.
But these days food is so well labeled that you will get the hang of it quickly.
All supermarkets have a gluten free section, there is nothing you cannot get these days (maxbe except croissanst, I have not found any that taste better than cardboard).

2 years ago I was in exactly the same position as you, my 20month old DC2 was diagnosed after 6 weeks of being very poorly.
Firstly don't feel guilty, it takes some people years to find out they are coeliac, you have found out quickly.
Within 3 days of being GF DC2 was improving, within a couple of weeks he was well again but it was probably 3 months before he was fully back to his old self.
Do you have other DC? If so I would advise getting them tested as well. We got DC1 tested even though he had no noticeable symptoms. His tests came back positive so we have 2 coeliac DC.
Even before DC1 was diagnosed I took the decision we were going to be become a GF home. I had 2 reasons for this. Firstly, I was worried about cross contamination. I bake a lot (and I'm a messy baker) and I cook most things from scratch, I just couldn't imagine myself cooking 2 meals without some contamination. Secondly, I wanted my DC to have somewhere where they knew all food was safe. When out and about, for the rest of their lives they are have to question the food they are eating, I wanted them to know they could walk through our front door and not have to worry about that. So our home is GF apart from DHs beer (He wasn't impressed with GF beer, I tried).
Once I decided to go GF at home I sorted and cleaned every kitchen cupboard, threw out lots of food, and ran all crockery through the dishwasher (dietician advised this bit).
It takes up to 2 years for the gut to fully heal, though children tend to heal quicker. You should get 6 monthly blood tests until all is well then they may go to yearly. It was 12 months before DCs bloods were 0.
It is hard that this is something that will affect the rest of there lives (or until a vaccine comes along, could be in less than 20 years!) but they don't need medication and it can be managed. For little ones they will know no different, my DC1 knows exactly what he is missing out on.
Join Coeliac UK, they have lots of info.
Get your Gastro consultant or GP to arrange a Dietician appointment, they will give you lots of info and will help you set up a prescription. Your DD is entitled to a monthly allowance of GF food on prescription (you can get bread, pasta, flour).
Go to the Juvela and Glutafin websites. They will send you free hampers of GF products to try out.
My DC2 quickly found his appetite again and took no time at all to regain his lost weight. He's been GF almost 2 years now and is a normal, happy, healthy 3yo. He's starting nursery soon and I'm nervous about that. I have to watch him like a hawk at birthday parties, whenever we go out I have to take snacks, but you get used to all this.
Shopping will seem a bit daunting at first, but you quickly learn what you can have. Allergy labelling is good, personally I find supermarkets own brands are labelled really clearly.
Don't forget you also need to avoid all oats at first (even GF oats), you can decide later if you want to try and introduce them.
Finally, you will make mistakes, but don't be hard on yourself (or others), you just have to learn from them. If DC2 does get even a crumb it makes him very sick. It's happened 5 times to him (only once so far this year, we're getting better), it's not nice and I feel terrible for him.
It us overwhelming at first but you very quickly adjust. Seeing them recover makes it all worthwhile.
Good luck!

Thank you everyone for your advice. I think I am in shock a bit at the moment and my thoughts are all over the place. I will probably be back on here with lots of questions over the next few months .

Thanks again :-) x

OP, May I ask what the symptoms were besides weight loss?

I ask because I'm wondering whether my DD might have that. She has awful awful sleeping pattern at night (up every 45 minutes) and is not keen on eating. She does have multiple allergies but they seen to be fading away, so I'm just wondering if its something else?

Sorry to hear that your DD has been unwell but hurrah for getting an early diagnosis!

One good thing is that there is so much more food available now for people who need to eat Gluten Free (coeliac or not) - the Free From aisles are in most supermarkets now.

As a newly diagnosed coeliac, she is probably better off staying away from oats for now - some coeliacs will tolerate oat gluten, others can't.
Of the four main gluten grains, wheat, rye, barley and oats, the first 3 have very similar gluten proteins, so there is a lot of cross-reactivity and they all need to be avoided. The oat gluten (avenin) is somewhat different, which is why some coeliacs can tolerate it. But you need to let your DD's gut heal completely first, so oats are best avoided for now.

The good thing as other posters have said is that once you take gluten out of your DD's diet, her gut will begin to heal quite quickly and she will start to digest food properly very soon, thus being able to put on weight.

It might be an idea to go easy on the dairy for now as well - dairy intolerance is a common side-effect of coeliac disease, as the enzyme lactase is produced by the brush border of the small intestines, which is what gets damaged by the autoimmune effects of coeliac disease. As the gut heals, so the lactase production should revert to normal - but until it does, make her life easier by keeping dairy to a minimum. Yoghurts/ fermented dairy products and cheese are usually ok; but milk itself is not so good - although you can get milk with the lactose removed now. Otherwise, a decent milk alternative might be a good way to go for a while.

Also OP, just incase you don't know, you can get bread, pasta,rolls,biscuits and baking items on prescription. Check out the website foodfinder