Advice needed please Re: Coeliac disease

[Fimbles5]

Sometime ago I posted that I was unable to give blood due to low iron. I never did investigate this, but have been feeling really tired, run down, since. I have also had a cold that is now running into its 3rd week that I cannot shift. Yesterday my Dad was diagnosed with coeliac disease, and I have been researching via the internet for information. Apparently, it can be hereditary. Most info says it is a condition whereby minerals and iron are not absorbed. Please help - Should I be concerned?? Do you think I need to be tested for this, or am I blowing my Dads' condition out of proportion (mean this in the nicest way!!) and thinking all my symptoms could be the worst.

My eldest DS has coeliac disease-just diagnosed a couple of years ago when in his twenties. We were told at the time all the family should be tested as there is a definite genetic link.
My youngest DS (aged 8) tested negative then, but has just had a positive blood test. He is waiting for an endoscopy to confirm the diagnosis.
Anaemia was always one of my DS1's main symptoms. You should definitely ask for a test.

If there is someone in the family with it, there is a slightly higher chance of someone else in the family also getting it. My mum has coeliac disease and didn't get any symptoms or get diagnosed until she was in her fifties. None of the rest of us have it yet, but it could develop later. Might be worth being tested for it, even if it just ends up ruling it out. The main thing with coeliac disease is you can't eat anything with gluten in (bread, pasta, sauces thickened with flour, etc) and if you do it tends to make you very ill - are you getting any symptoms like this?

The advice is that all immediate relatives should be tested when a member of the family is diagnosed so yes you should be tested now especially since your iron is low and this can be an indication - and in the future if you have any symptoms which suggest coeliac disease might be developing. You Dad will find a lot of very helpful information here:

www.members2.boardhost.com/glutenfree

and on the linked supplementary board where you will find saved information about the hereditary aspect etc.

Hi Fimbles5

I was diagnosed with Coeliac disease nearly a year ago and my only symptom had been anaemia - I've been anaemic for 20 years but it had been put down to heavy periods. So yes, it's a good idea to get tested.

When I was diagnosed, my Mum, brother and ds2 all got tested and all are negative, but there is a genetic link.

Go to your GP - have to say our GP was very reluctant to test ds2 - probably because he was 2 at the time so it was a bit of a palaver, but it's worth pushing for the blood test.

And don't cut down on your wheat intake if you are going to have the blood test!

Thankyou all for the advice. I have no other symptoms at all, and have always eaten bread, pasta etc with no reaction, so hopefully it is just a matter of ruling it out. Have booked an appointment for Thursday. Thanks also flamingtoaster for the website info - poor Dad seems a little daunted by it all at the moment!! I am trying to reassure him about something I myself know nothing about. Its so hard!!

Fimbles5 - I have coeliac and so does my sister & my Mum. Don't worry too much, and reassure your Dad as much as you can - of all the things to be diagnosed with it's not so bad to live with once you get used to it. In fact, being diagnosed just means that you get a new lease of life once you give up gluten and suddenly you have so much more energy! Or that was my experience anyway. I must admit it's socially inconvenient not to be able to eat wheat, but that's about it. It's just habit. I used to have toast for breakfast, sandwich for lunch, pasta for dinner. Now I have fruit & a yoghurt for breakfast, baked potato or salad or rice salad for lunch, and I'm having roast pork, broccoli & mashed potato for dinner tonight. Which isn't exactly a hardship. And it is possible to get gluten-free versions of pretty much everything in the supermarkets these days - even pizza!

Fimbles5 - tell your Dad never to hesitate to ask anything on the glutenfree board as everyone on it has been there and knows the problems. Sometimes "newbies" hesitate to ask what seems obvious questions but he mustn't hestitate because it's at this stage he needs all the support he can get.

Fimbles5, as the others have said, it's terribly daunting when you are faced with a condition like Coeliacs (my dh is wheat intolerant but tests negative for Coeliacs, my ds is wheat and oat intolerant and I can't put him back on both long enough to be tested). But you soon get used to it, the main bother is eating out, as thebecster says.

Watch out for wheat in all sorts of unexpected areas, like baked beans and stock cubes. It takes a while to get used to but it is manageable. Coeliacs isn't "the worst" so if that's what you have, it'll be fine.

Fimbles5 - something just occurred to me. One thing which confuses newly diagnosed coeliacs (and often delays their recovery) is the gluten reduced wheat Codex Alimentarius question. Many coeliac products in the UK contain gluten reduced wheat - i.e. they are made with wheat from which most of the gluten has been removed (the current standard is that it has to be below 200 ppm in the UK). However, what many people don't realize is that this standard was set assuming that the coeliac would eat no more than the equivalent of five slices of the bread per day otherwise the "safe" limit will be exceeded. So if you Dad uses gluten-reduced wheat products he could eat five slices of the bread, or, for example, three slices of the bread and a couple of biscuits if they are also made from the gluten-reduced wheat.

Most coeliacs recover well using these products but there are some who cannot tolerate these products and do not recover until they switch to glutenfree products which do not contain Codex Alimentarius wheat either because their tolerance to gluten is very low, or because they are sensitive to the wheat itself. Just thought I should alert you about this!