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Celiacs disease

milkymummilkymum
posted 7 years 10 months ago
I was just wondering weither there is anyone else on here who's little ones have celiacs disease?

The reason for this is because I have got to get EJ tested for this condition and I am so confused and over-whelmed by it all. I have found out that it is a genetic condition so either me or hubbie have the dormants gene and one of use have this conditon ourselves. I am thinking it might me as I have quite a few of the signs and symptoms but they feel I might just have IBS which appartently celiacs is being mis-diagnosed as in adults. EJ's wieght is yoyoing between the 2nd and 9th centile which the doctor is ocncerned about but is happy to wait for the blood tests he has given me the paper work for until we see the neurologist again in January to find out if he wants to do his blood tests with the tests the doctor wants doing to save EJ the distress again in the new year but if in th emean time EJ's weight drops to or below the 2nd centile then get the tests done ASAP. He also said to start reducing the gluton and keep a diary of his motions, colour and consistence. If it's one thing it's another. I just want 1 week with-out one fo th echildren having ot see the doctor for one thing or another. Any advice on Gluton free recipes would be greatly appreciated too

Thank you for reading and repling any advice you have


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AlexAlex Moderator
posted 7 years 10 months ago
I have never heard of ceilacs being genetic, and even if it is you yourself don;t have to have it you could be a carrier.

There are several good websites available with support and recipes. I have tried a few as my mum is wheat intolerant and they are hard. trying to get the balance of the ingredients is tricky.

If EJ is ceilac you will get things like your bread/pasta on prescription. Sainsburys is one of the best places for buying gluten free things although tescos and Asdas have some good things aswell. These things dont taste any different (apart from the bread- it is minging!! and is really only good for toasting) I make lasagne, pasta bakes all the time and my dad is a chef and he doesn't notice any difference!!

Good luck with the tests

milkymummilkymum
posted 7 years 10 months ago
Thank you Alex I already buy biscuits, cakes, crumpets and ceral bars from the tesco's free-froom range and they are also wheat and gluton free. EJ loves eating them and he eats these crumpets better than the crumpets I buy for the rest of us. I am goingot buy a bread-maker to make bread with a recipe I found that has been tried and tested on a fussy eater who has celiacs so if they eat it then it must be edible. I am going ot buy some gluton/wheat free flour tomorrow as I love baking cakes and biscuits. I prefer to give my kiddies home-made things instead of shop-bought as then I can monitor the amount of sugar and salt that is in there foods better. Once we have doe nthe tests and got the results I will be share the results as no matter which way it goes it will be a big releif

AlexAlex Moderator
posted 7 years 10 months ago
The gluten free flour is good(the buckwheat discolours everything and makes it loook grey!) but it may tsake a bit of trial and error to perfect your recipes. I have tried scones many times but they always end up like rock cakes!! LOL. Eves pudding is easy to do, crumbles, yorkie puds are ok aswell. As I said using the lasagne sheets are good and you wont klnow the difference (don't recommend the corn ones though Gag )

Watch when you are shopping and read the labels you would surprised what contains wheat and gluten! Soya sauce has gluten. You can have bisto powder but NOT the granules. If I think of anything else I will let you know.

milkymummilkymum
posted 7 years 10 months ago
Thanks fo that Alex. I buy Tescos' expensive gravy and never tought about checking it. Me and hubbie are goingot have a long talk tonight when he gets home about what action we are goingot take. I am thining get the test done know and just live with the distress instead of having ot wait. And then we can get him on the gluton free diet without having ot mess about again in the new year so we don't get a faulse result. He is eating some chocloate beans at the moment that I have used to decorate his sisters cake with, they are diary, wheat and gluton free he is loving them. Nearly a pound abag so he wont be having them lots. A friend of mine said potatoes have gltuonin but I think she is thinking of the instant mash which I refuse to use. I only us real potatoes for all the things you need potatoe for or sweet-potatoe. Got a delious chocolate fudge recipe. Will share it later over in the forum for the kitchen stuff.

hipmommahipmomma
posted 7 years 5 months ago
Hi there.

My daughter was diagnosed with coeliac disease last week. She has been ill for a very long time, and at christmas they thought it was lukemia, so in the grand scheme of things I am glad it is just this!

I went food shopping today for my first full shop since her diagnosis, and ~I have to admit it was tricky. There are masses of manufacturers out there, but finding the stockists is another matter. I found that in Tesco at least they really only had dry stock - which as a general rule is fine, but my daughter is just coming up to 2 years old, so if big brother and sister are having fishfingers and chiops say one night, how is she supposed to understand why she has something else?

My positivity lies in the fact that i know 12 months down the line everything will be second nature. Coeliac UK is a charity that are the leading soucre of information for Coeliacs and their parents. You can get links to all the brands websites, many of them offer free samples when you register and have lots of tips and recipies.

It is all so very daunting, hope you are getting on well with it now Smile x

p.s. the ONLY gluten freee gravy is bisto best!

AlexAlex Moderator
posted 7 years 5 months ago
You can get gluten free fish fingers in tescos Very Happy Sainsburys also have pizza's chicken pies and some other frozen things.

hipmomma- as your daughter is diagnosed will you not get some of the free from things on prescription? I know a little boy who has coeliac and he gets some bread and pasta on prescription.

If you have room in your freezer- the bread HERE is really good- I like the hadrian bread -yummy. Very Happy you need room in the freezer because it is £6 deliver so it is best to get a load at a time. (oh and it is best kept in the fridge once you have opened it)

hipmommahipmomma
posted 7 years 5 months ago
Hi. Yes my daughter gets some basics on prescription so yes the staples are covered. Although we will definately be trying a different bread next month, because most of what I have given her so far has gone straight in the bin!

My tesco didn't have the fishfingers, that is what i was really looking for! Sad

sainsburys however was going to be my next port of call!!

I have been recommended the Genius bread by a Coeliac mum friend of mine, but that one you can't get on prescription.

Thanks for your input Smile x

AlexAlex Moderator
posted 7 years 5 months ago

hipmomma said:
Hi. Yes my daughter gets some basics on prescription so yes the staples are covered. Although we will definately be trying a different bread next month, because most of what I have given her so far has gone straight in the bin!

My tesco didn't have the fishfingers, that is what i was really looking for! Sad

sainsburys however was going to be my next port of call!!

I have been recommended the Genius bread by a Coeliac mum friend of mine, but that one you can't get on prescription.

Thanks for your input Smile x


The genius bread is good (you can make a sandwich with it- the other stuff you can't it needs to be toasted!!) but the stuff from the website is FAB and way better my mum says.

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