nervous wait for coeliac for ds

[donnacb]

DS had a milkallergy an egg allergy and we will find out if hes coelic this week. Very nervous as not sure what the poor boy will have left to eat. also had more allergy tests done. Anyone else with the same problems. Poor ds is low weight hes 19 months and looks like a 1 year old.

Havent given him soya yet either. Worried about oestrogen etc and could be allergic as well.
argh well ant recipes greatfully recieved.

cheers donna

Hi Donna,

I really feel for you. My ds was 2 a few days ago and still fits into his 9-12 month clothes (only just though). He is allergic to dariy, soya, eggs, nuts & wheat. Jamie showed all the symptoms of coeliac, but it was decided that as he wasn't losing weight and was full of energy and active that he couldn't have coeliac, but was found to be allergix to wheat. We are still not sure if he is coeliac or not as not all coeliacs lose weight and he hasn't been tested since he was 7.5 months (before he started solids). I guess that for the time being, it doesn't really matter as he is on a wheat free (pretty much gluten free) diet for the next 2 years and also on medication to help dampen down any reactions from accidental exposure.

I know that it sounds like a wheat/gluten free diet sounds impossible on top of a milk/egg free diet as well, but it is not really as hard as you think it might be. We do alot of meat/potatoe/veg meals, minus gravy as it contains wheat powder, unless you get the gluten free one. There is also gluten free pasta and breads. Rice is a good alternitive. It may be an idea to get in touch with the supermarket you use and request "free from" lists. Tesco were happy to supply this for me, but I have to cross refernece everything with so many allergies.

If your ds is coeliac, he will get his food on prescripion and a good book to try and get, either from a dietician or from the coeliac webite is the "Gluten-free food & drink directory". I got my copy from ds's dietician.

Good luck and I hope the test come back negative. Hugs

Psychomum has a probable coeliac son - but she is away this week! I will save this to my watchlist though (or maybe even log in and save it to hers) so that when she does get back, she will be able to talk to you (and hopefully the other mums that reply).

Oh, Jacob is allergic to milk too, but he does have soya milk. It is hard, but from watching her, it seems to be something that you just adapt to and get used to.

Oh, and as much as everyone on here hates MacDonalds - it might help you to know that they know exactly what is in their foods, can give you a list so that you know what he can have, and are very helpful with cooking it etc - even if you do end up with just a plain burger, no bun, and some chips.

Pizza hut is the other good one - if you take your own gluten/wheat free base, they will topping it and cook it for you.

I know you probably don't do either on a regular basis, but it is handy to know .

Jacob is very low weight too - he has always been diddy like yours, but is developing fine, just small iyswim.

My DS1 was diagnosed as coeliac aged 20 months and is now a strapping seven year-old. From the day of diagnosis he hasn't looked back, quickly regained his weight according to the centile chart and went back to the happy, energetic lad he had been before the intolerance took effect.

It can be hard to start with but labelling is much better these days than it was five years ago and the range of products available is better too.

To start with he was kept dairy free as well as gluten-free to give his insides a chance to heal themselves but within six months was back eating dairy products.

If the results come back positive Coeliac UK should be your first starting point - they have a website - and they should be able to put you in contact with your local group organiser. Your local group might also have a children's co-ordinator whose been there and got the t-shirt etc so will be able to speak from experience.

HTH

Thanks everyone for your support. Sorry havent logged back on before but havent had a chance. But yehaa and jump for joy blood test for coeliac has come back negative so just waiting for allergy tests to come back now. apparently another three weeks for those. I think there testing wheat soya etc. not egg or milk as definate reactions to those. So now he is on a big dose of iron supplement as anaemic. that will help his constipation (not). But so ectastic for him. Heart mum to jamie my ds sounds very similar to yours so wonder if he has a wheat allergy. Will have to wait for that one. Thanks to all donnaxx