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coeliac disease - info and advice wanted please!(9 Posts)
My friend's 4 year old daughter has just been diagnosed with coeliac disease . My friend hasn't yet managed to talk to a dietician, as they are all apparantly too busy. She has sent off for what she referred to as the coeliac bible, which gets updated on a regular basis I think and is a list of all the foods and other goods from supermarkets.
She knows all the basic stuff (she researched it a while ago) and has joined the coeliac charity etc but any advice and experiences would be really welcome I think. She knows that when the official diagnosis comes through she will be able to get some things on prescription.
My friend is particularly worried as the consultant has told her it is very likely that it was the coeliac disease that triggered her daughter's leukemia (which she is in remission from), and of course her whole family have to be tested now including her two other children. She is scared stiff that her other children also have leukemia .
Has anyone else been in the same position and how have they managed?
I was so ignorant of this disease I didn't even know that gluten was present in things like cling film and apple wax. Appparantly Sainsbury's is about the most coeliac friendly supermarket as it has great labelling concerning this? Any other hints or suggestions, please? I really would love to be able to help her in this way.
This is the best site that I know of for advice and info.
gluten free message board
I have never heard of a connection between Coeliac disease and leukemia but I'm sure if you ask the question on the above site someone will have advice.
If a family member has Coeliac then all blood relatives should be tested regardless of whether they have symptoms or not as even if the symptoms are not present gluten can be causing unseen damage and if a blood relative has it the chances increase from 1 in 100 to about 1 in 10. A negative blood test doesn't mean you'll never have it so if symptoms later develop you need to be retested.
If your friend cooks from scratch she wil be able to adapt most meals to GF. All the supermarkets have a free from section - Waitrose is good but as always more expensive. These sections are good for products like biscuits, bread, pasta, cereals etc. These tend to be expensive but as you say once she has seen the dietitian she will be able to get some food on prescription. Labelling regulations have recently changed and so it is easier to tell which products contain gluten - all ingredients must be listed and although not compulsory most products have an allergy box.
I'm fairly sure that gluten is not in apple wax or cling film although now that you have sown that seed of doubt I'm off to google!
It seems so unfair doesn't it for such a young child has to have health problems. The good thing about Coeliac disease is that although it is very inconvenient, if she sticks to a gluten free diet it shouldn't give her any future problems.
thank you chopchopbusybusy (love the name by the way!). I will your message onto my friend .
Any more from anyone else?
Can't help much except to express sympathies - rotten luck re the leukaemia and THEN coeliac batters, I'm so sorry
BUT, as chopchopbusybusy says, with the right diet, the child will flourish. Dd has two children with coeliac in her class, and both are the picture of health Waitrose also do a good range of gluten-free foods in their "free from" line.
my type-with-one-hand-while-eating-sushi-googling has come up with this chat forum for people with celiac disease or children with celiac (note: celiac seems to be an acceptable alternative spelling) - www.glutenfreeforum.com/ - might be good place for your friend to post questions?
gosh batters, what a blow to your friend. i did a programme on this - i think the expert was called paul ciciltera, so google that plus radio 4 and you should find him (can't remember whether it was a case notes or a check up programme)
Yes, glutenfreeforum is simply awesome. I have been reading deep into gluten issues and have been told by a consultant that gluten is severely involved in adverse immunity (my son is gf and dairy light).
Keeping fingers crossed, things might improve on the strict diet. Jan de Vries wrote a book about leukemia, which might give your friend some great alternative ideas (totally legit) - Cancer and Leukaemia: An Alternative Approach.
Additionally, for you I would also like to mention 2 real life stories (no happy endings tho) about children with leukemia, "Ollie" by Steven Venables and "Living on the seabed" by Lesley Nicholson. I wouldn't mention them to your friend tho, just for you so you can offer support if things don't improve.
Hope you haven't taken it the wrong way, I found that sometimes for me it helps to see how others coped to see myself through a sticky patch. Both books have lots to offer in terms of coping.
sorry I can't offer help on the leukemia/coeliac front but just wanted to say that a friends daughter has coeliac disease and, after wading through lots of info, her little girl is now much, much healthier looking, feels good and they manage really well with gluten free. Good luck to her.
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