General quuestion

[bettyboo]

Hi ,i was diagnosed with Coeliac in 1954 /55, when i was ten year old my parents were advised to wean me on to bread cakes etc.So for thirty years i was so poorly always hungry and very skinny.At the age of forty two i became extremley poorly, the hospital did tests which shown i was Coeliac.Now when i am at the hospital or doctors they think i have been a Coeliac from the age of 42 when i have been a sufferer for nearly all my life.I can not think why this doctor thought it was safe for me to eat gluten again.Has any one else been in this situation .Thank you for reading

[carona]

Hiya bettyboo- altho this may not be the reason in your case, it does sound similar to the advice I was given about my son's food allergies/ sensitivity almost 26 years ago. He isn't Coeliac- but from the stage he was being weaned off breast/formula & onto the vegetables & meals I was preparing for him. He would react quite badly to green veg, certain meats & eggs. His Consultant advised me to try him regularly with a small amount - just one item - to help build up his tolerance levels. So don't know if this was dodgy advice off this particular Dr or the general attitude of that time?

As to the 'dating' of your diagnosis- surely your health record from years past would suggest a condition that had been not been confirmed for a number of years?

Stand your ground & argue it. Out with them. To ensure you get the care you need.

[NorthernSoul in reply to carona]

Allergies are different to coeliac disease in that people do sometimes grow out of them (although this does only apply to certain allergies- peanut allergy, for example, is rarely grown out of).

[Hidden]

It isnt that easy to get copies of med records even if one is entitled to them. I have been in loads of problems asking for info or copies, at the moment am having big difficulty with Manchester Royal infirmary. I go to Heart, coeliac, gastro, and dont get info. Told to pay small sum. in 2007 paid £50 for info that had been ignored for 11months. Told to ask at clinic time , Ask till blue in face but told have to pay. Have stired it up with Pals , but told same as was informed when I paid £50. I have done my utmost to get copies. still told PAY. seems entitled to some but not all. Heart and coeliac say WE DONT DO THAT. Rules are ok , saying entitle to ...doesnt mean that is what happens. I am weary of trying to get copies and causing friction because I dare to ask. gp also change rules..say ask hospital,hospital say ask gp, surgery say hospital not contacted us, hospital say we have. AS you can gather it is all very disturbing for all when apparently I am ENTITLED to them. As am in mid 70s dont expect many years left to pester for info,been doing it for 6yrs since I paid £18 for deceased husband record and found hospital had given incorrect info to his gp, if we had that info we could have rectified mistake and husbands care would have improved..to pallative care at least, and he wouldnt have been left struggling like he was till the end, thinking it was him being a moaner. Its 2012 now not 1012 when doctors did as they pleased and you never questioned anything.

[bettyboo]

Thank you Tony your answer has put my mind at ease i will ask my doctor if i am able to look at the period of time on my notes,i have a feeling that most of my notes are at the hospital .I spent a long time in the hospital as a baby/young child.

Yes at the age of 42 i was very poorly i knew what it was but had to do the seven day collection.........

I can not even eat oats which i find really frustrating as i love porridge .

[bettyboo]

So in a way if the doctors knew more about the illness he would not of advised my mom to wean me on to bread etc.Giving me a much better way of life as a child..........

[Adnil]

Many years ago in the mid 20th century Coeliac disease was considered to be a disease of childhood only. The dietician I saw when I was diagnosed 21 years ago told me that when she did her training she was told that only babies and small children presented with Coeliac disease; but by that time she was advising far more adults than children! Consequently parents were advised to eliminate gluten from their child's diet but to re-introduce it gradually when they reached their teens, on the assumption that they would have 'grown out of it', only to 'return' years later and presumably this is what happened in bettyboo's case.

[bettyboo]

Even my gp now has been diagnosed with Coeliac he had no idea till he started having the teltale signs.I am finding the ppl i talk to have been diagnosed in there later age and had no signs when they were younger,which i find strange.Could the illness of gone unnoticed.

Hey Adnil the second time round was so awful ,what a baby has to go through must be horrendous.

[Adnil]

Of course babies were fine until they were being weaned on to what I now refer to as 'human' food (much to the amusement of my grandchildren), when they became unwell with persistent diarrhoea, vomiting and, of course, weight loss, and so often the diagnosis was obvious. I think I may have been Coeliac all my life as I was always prone to stomach upsets, which took me up to a week to recover from rather than the 24 hours that other people seemed to take! However the final 'bug' did not want to clear up at all and I experienced several months of feeling very unwell, but as my symptoms and subsequent blood tests were so typical I did get a quick diagnosis, even though by then I was feeling much better! I do feel fortunate though that I am not too sensitive and can eat oats and all 'gluten free/low gluten' products with no problem. By the way, after having worked in a GP surgery for many years I can confirm that you are entitled to copies of your records, but there is a fee as it is not a provision under the NHS and it is also very time consuming copying all the early non-computerised records, which should contain copies of hospital consultant correspondence from your original diagnosis.

[Hidden in reply to Adnil]

Lots of the info in my notes were incorrect. Nursing staff had made incorrect remaks. Like for instace ..Son took keys and money of me so couldnt discharge self (had none to take ) Had taken husbands warferin. (He wasnt on warferin) Had taken meds that I didnt have. I said I had jewellery on ie. gold chains, gold rings, gold earings, watch. No one believed me AT ALL. Weeks later guess what insisted, managed to get returned. etc.etc. mistakes. Blood tests done but not told why. then told ok. doctor couldnt understand why I wasnt extra pleased. How could I be when not told what was being investigated. Just said ok. This made me realise why its important to be aware of what info is passed on to others.. In another hospital wrong info was sent to gp about husband , which we could have corrected if informed. Husbands treatment could have been much improved and life less troublesome for him ( he was struggleing to put on brave face as drs refused to believe how poorly he was due to wrong info.) again I paid for info, too late as was no longer with us. His gp wouldnt tell us what hospital said when we asked. Some patients are fortunate to get copies posted to them same as sent to gp. Other like me dont, we cant understand why when attending same hospital. Sorry but not advanced enough to correct any mistakes in typing. Its scary if this and more can happen to one family In one hospital, husband admitted as emergency heart attack and (true) the staff had my female notes overnight...Two drs turned up, one his and one was mine. (husband behind screens) quarelling as to whose patient it was. Eventually mine won....pulled screens back saying (this happened later in early morning) there should be a WOMAN in this bed, to which hubby said Ive changed my sex (he did have sense of humour) The dr wasnt at all pleased rather flustered I expect.. Is this what is called human error, its laughable but serious.

[Jacks]

My consultant tells me they just didn't have the information then and they are still learning, so advice was based on their best knowledge/procedure at the time. Once advice was to eat toast! I think in the future they'll shake their heads at us being told it is safe to eat a lot of the foods allowed in a current GF diet.

CUK have a timeline you might find interesting:

coeliac.org.uk/coeliac-dise...