Coeliac Disease - 3 yr old DS

[dandeloin]

Hi All,

my 3 yr old son has been diagnosed as having coeliac disease. He had the biopsy done on Monday just gone, waiting on the results of that for formal confirmation but bloods have already tested positive and the surgeon from Monday said all signs are pointing towards his being coeliac. I know it sounds daft, but I'm struggling with it all. DS is eating very little, very hard to move him to a gluten free diet when he only eats miniscule amounts as it is. He has no energy, regular tummy pains, very swollen tummy, in bad form and I just don't know what to do to help. If anyone has been in this situation with a young child, I would appreciate any advise on types of food that are nice for kids etc. We have been referred to a dietician but its the never ending waiting game to get an appointment...

His appetite will pick up as his gut starts to heal. Would he drink a smoothie to up his calories while that happens? You might want to use lactose free milk to make them as lactase is made in the bits of the intestine that are damaged by CD, but you can add things like almond butter, banana, choc powder and fruit to them, plus a scoop of protein powder to make them really nutritious.

I know that it is really daunting to think of having to change the way you cook, but it will get easier with time. It can help to do a meal plan and go back to basics (ie, meat, potatoes, rice) for a few weeks while you get the hang of it all. Go through your cupboards and read the labels on everything, and throw out all the stuff which has gluten as a side ingredient - so keep gluten pasta, flour, noodles (if you wish, most people aren't a totally gf house) but not stock cubes/gravy/soy sauce/beans/ketchup and so on which can trip you up so easily.

All the major supermarkets have a free from section, though some are better than others, and some stores are better than others! Even Aldi and Lidl have GF things now. I like ordering online with Ocado and Morrisons as they have great selections of GF food, and all the ingredients for everything are there online so you can check easily. In the UK gluten has to be stated explicitly on the label, so its not a hidden ingredient.

I have two kids with coeliac. One is 8 and the other nearly four. Both diagnosed last year. Youngest suffered dreadfully and its taken a long time to get her to eat. She use to eat a wide variety of food but its shrunk to one or two meals. Its been slow progress with her. The problem we've found is the association. She hasn't been about to get past it yet. Previously she'd eat fish fingers, nuggets etc and now won't even touch the gluten free version. I never realised how badly coeliac affected the body but it's awful. My eldest was a silent coeliac and still eats well. I'd say small amounts of old favourites, no fuss. It'll take a while for the gut to heal. Both mine were diagnosed through blood tests their levels were so high. Plus they also have the gene. Our dietian wasn't brilliant. Do be very careful about cross contamination. No one who has gluten sharing their drinks, separate utensils, bread board etc.

My daughter was diagnosed at 20 months after a very severe presentation. Initially she was given a high calorie milkshake to address the weight loss and an iron supplement as she was very anaemic. Worth asking the consultant or GP for both. The dietician was a moron with poor advice. Worth joining Coleiac UK who have really great resources. Because we had high cal shakes, we could focus on rebuilding her relationship with food in a more relaxed way ie it didnt matter if she didnt eat any dinner so long as she was re-engaging with food by touching and tasting it. We found that avoiding all substitute foods was the way forward as her association between gluten (bagels/crumpets etc) and vomiting was very strong that a gluten free bagel induced crying etc. We focused on food she liked which was initially just mince, plain yog and strawberries and gradually introduced new foods. She is a healthy 3 year old with agreat appetite and eats a huge range of foods, so there is hope!
Agree with cross-contamination, our house is now totally GF but I eat it when I am out.
Be wary of substitute products which are often high sugar and fat. The only thing we have is GF bread bySchar. A naturally GF diet is very easy though be wary of too much rice ie rice pasta and rice cakes - sub with corn cakes. Finally, you will need tk get really good at checking labels and encourage your child to confidently ask adults if something has gluten in it (eg parents giving snacks in a playground).

Oh and remember to watch craft items like play dough and washing hands after touching. For a lot of coeliacs even a crumb can be agony. We're a 90% gluten free household. One child is coeliac and has cereals that aren't gluten free. Like pp said be aware that some problems are full of sugar. A natural gf diet is quite easy but hard when they're small if they have had awful experience with food. Coeliac UK is good and there's a kids with coeliac group on fb.

I have the Dorling Kindersley Gluten Free cookbook and really like it - it has recipes for pretty much everything you can think of, from pizza to cupcakes, and mostly easy to follow.
The other recipe I would recommend which isn't in the book, is very popular with my (wheat eating) family and is really really easy (I only cook easy things!) is chicken nuggets made by chopping up chicken and then rolling in GF flour, then egg, then crushed GF cornflakes. Then bake for 20 minutes. Serve with mashed potato or rice.
I adapted a recipe like this one: realfood.tesco.com/recipes/cornflake-chicken-nuggets.html
You will get the hang of it!
I hope your son feels much better soon - I don't have any experience of an unwell child with coeliac disease but it must be horrible to see him feeling so poorly.

Hi All,

thanks for your kind words, and your advise. Re. the lactose free milk - my son does drink quite a bit of cows milk, so should I move him over to lactose free? If so, can you please advise how I can make a smooth transition, do I just swap completely, or "water down" the cows milk with the lactose free? He notices even when I add some water to his drinks of milk, so not sure how the change will go down with him. He is anaemic, but not badly - should I look at putting him on an iron supplement and if so does this have any ill effect on the tummy? Are the high calorie milkshakes on prescription, or where can I get them?
I am impatiently waiting on a call from a dietician to see if they can offer any advise.
Thanks again for taking time to reply to my messages...

You can buy LactoFree milk in the supermarket - same bit as normal milk. Just see if he'll drink it. He may not need to lower lactose, but many coeliacs do for the first 6 months till things are healed and it can't hurt.

Ask your GP about the iron supplements.

You can buy high calorie shakes, like Paediasure, or get them on prescription but they don't taste great imo. But they are packed with vitamins etc and can be added to to make them taste better

The iron and the high cal milkshakes were both on prescription. It was a vile strawberry Nestle thing. We gave it instead of snacks just til her weight stabilised. The iron was a liquid supplement and was very gentle on her tummy. You could always give Spatone which is very gentle.

Re the milk - i don't think there is a signficant difference in taste so I would switch over (maybe with the novelty of a new cup?)

It does seem daunting to begin with, it will get easier and in 6 months it will be second nature.

Gluten free pasta tastes the same as ordinary pasta.
Gluten free bread is frankly grim - buy the best you can afford.
Gluten free brands of sausages are available in most supermarkets. Ditto gf fish fingers and pizza in freezer section.

If you buy gf flour blends you can substitute this for ordinary flour in most recipes.

Eggs, vegetables, fruit, meat, fish are all naturally gf.

Baked beans are gf

Lots of brands of oven chips are NOT gf. Also check your stock cubes.

Remember ordinary soy sauce is not gf but tamari (Japanese) soy is.

Finally, did you know there is an allergy and intolerance board on here (look under Health)?