coeliac disease ....DLA????

[mrsforgetful]

My friend's 14mth old has been diagnosed with Coeliac Disease....just wondering if anyone here gets DLA for that....he has no other diagnosis.

they can try applying. make sure they note how hard shopping trips are (am i right in thinking this a gluten-free diet?). i know people who get lower rate for peanut allergies.

Hmmm maybe not at 14 months (just thinking an average 14 month old needs quite a lot of time food wise). I mentioned all of ds1's gluten free stuff on our DLA form- but I don't know how much it counted for. Might be worth asking the coeliac society,

I think my niece's daughter gets it for diabetes but not sure what level. Buying GF food is very easy these days on line and in many supermarkets plus quite a lot can be given on prescription. Worth a try anyway but probably best to find out how likely before going through the rigmarole of those forms

what else is involved in coeliac disease? hospital trips, gp appointments, special diet? all worth mentioning. i think it works out that if you spend on average one hour extra a day sorting out extra care/attention to your child than a 'normal' child of their age needs.

What's DLA?

DLA = Disability Living Allowance.

My sister's dd has coeliac disease and she gets a lot of gluten-free food on prescription from her doctor's. Kids' prescriptions are free so it's free food! She doesn't get DLA though.

Tell your friend to contact the Coeliac Society, they're a charitable organisation and very, very helpful. My DH was diagnosed age 3 and they've been a great source of advice for him over the years and they were very helpful when we thought our DD had the condition too. They produce a regular magazine which has lots of info on how to deal with the condition, recipes and other stuff. Their web site is here
It's free to become a member but they need donations to keep it funded.

MrsForgetful, I have Coeliac Disease, since age 15, diagnosed at 27. People think it's an awful condition, but it's not, what's awful is NOT knowing what you are allergic to. Yes, the Coeliac Society is fantastic and will send its members newsletters, updates from manufacturers with mail order leaflets and a little book listing gluten free foods from all supermarkets. I have found labelling and awareness much improved since first diagnosed 13 years ago. Sainsburys have a whole section devoted to Gluten free foods and I have read that Tesco do as well. The Gluten Free bread in most health shops is heavy and not particularly nice but Waitrose sell the Antoinette Savill bread and rolls which when toasted are really good, the rolls are like crumpets. Also in the range are Gluten free chocolate muffins!
Tell your friend not to worry. It will be easy now as child still a toddler. I think it must get harder when child is at school and refuses to keep to the GF diet.
I have never tried to get flour on prescription so can't offer advice. I have a spare book if your friend would like to receive it called "Coping with Coeliac Disease" by Karen Brody. It explains everything and is very helpful, tells you all the ingredients to avoid. If you email me her address, I can post it tomorrow in time for weekend reading. Have a very good book called "Against the Grain" by Jax Peters Lowell which I bought in the States.ISBN 0-8050-3624-3 which is very informative. It has pages at the back for when you travel called "Photocopy and Pack" pages so that you can go to a restaurant in Russia, Japan, France, Greece, Israel, China, etc and show them the page in their language so they understand what you must avoid.

thanks to everyone- i was bowled over by the replies- chickpea...that is soooo kind- i will contact you with her address-

Thanks for all your reassurances.
he was thought to have cystic fybrosis so though 'for life' we are all relieved that he has Coeliac NOT CF.

Where i'm coming from on the dla is that i have this image in my head of a child running riot searching for food containing gluten which i believe they end up craving....but maybe that is not the case!!! I'm basing this assumption after watching programmes about autism and the mum of 4 boys having to stash food away so they don't try to eat it. maybe if there is no other diagnosis then this would not happen.

she also has 3 other children - all healthy- so again from HER point of view i suppose she needs to focus on what he CAN eat rather than CANNOT- then feed the whole family as much of this as possible.

they are a very low income family....but not on Income support.....would they be able to apply to the family fun for a BREAD MAKER if they end up not getting DLA???? As i understand the FF is for disabled children....and 'just' because DLA isn't awarded doesn't mean a 'family' aren't 'disabled' when one of the children has a 'compromised' quality of life?

JJ- you're right about the age thing....it might be a case of only being able to appy once he gets to school age and he will be expected to be an independant eater etc.

MrsF- coeliacs don't crave gluten. Autistic children on gluten free casein free diets are not coeliac (which is why they can't get the fod on prescription whereas a coeliac can). They're like my ds1 and have a leaky gut- the gluten passes into the bloodstream in much larger molecules than would be possible normally- and these happen to act like opiates. Effectively they become drugged by their food and that's why they crave it.

Ds1 regressed following a major course of stong antibiotics and his eating habit changed overnight. He went from eating everything to just eating bread and cheerios (literally he refused everything else).

Removing an autistic child from gluten (if they have the leaky git problem- not all do) is like removing a drug addict from their fix. Usually there is a terrible period of a few days (my friends son sat on the floor turning in circles screaming for 3 days) then a rapid improvement. DS1 stopped counting stairs obsessively within 3 days of coming off gluten (and started again immediately I gave him some by mistake 2 weeks later).

Coeliacs don't have this problem. GLuten makes them feel pretty terrible (rather than pretty good if you like being stoned!) so they don't crave it.

mrsf- As he is dxed as coeliac she will get gluten free food on prescription. A lot of the bread is inedible but you can get a great breadmaker (hinari) from Argos for 20 odd quid (best one for gluten free breads) and then your friend would be able to get flours on prescription.

Mind you if he grows up eating the horrible prescrtiption bread he's not going to know any different.

My DS was on a gluten free diet for a while, when trying to resolve his excema (lots of other food allergies too). You can get bread, flour, pasta, biscuits (icn chocolate ones etc), crackers and various other things on prescription. The dietician at the local hospital should be able to give info as to what you can get - you can just call them at our hospital - no need to make a special appointment. The doctor will also have all the lists too
Also the main supermarkets can provide lists of what food is suitable for a gluten free diet to make shopping easier - again got the info from the hospital dietician

JJ-thanks for brilliantly explaining the gluten/autism /coeliac..... i will tell her about the breadmaker in argos. saw her today and she seems relaxed about it all- says that she's less restricted than if he had a lactose intolerance....she has a directory listing branded 'safe' foods....and aparently he can have a mc donalads burger (no bap) ...so her other kids won't lose out on visits to McD's!

my son is gluten free to because of autism and we get all his stuff on prescription: pasta, bread, biscuits, flour etc

We were also offered GF food on prescription but, as we never did the diet, didn't take it up. I also think that some of the reason that autistic children want GF food when they shoudln't have it is that they don't have the cognitive abililty to understand what they can and can't have. I know a few HF/AS kids who totally understand and actually police their own food or always ask their mum/dad. Some of you might find these stickers useful - they indicate food allergy and can be stuck to your child?s clothing or bag etc when they are out in public, available from www.medicareplus.co.uk to avoid too many "accidents" which certainly can happen

Just wondering if anyone could tell me how you find out if your child should be on a gluten-free diet, the doctor who diagnosed our daughter with Asperger's said there was no reliable test that would give us an answer.

`Krti you can get the test done at Sunderland Universiy autism research unit. Will post link later- but you'll find through google.