I have been a Diagnosed Coeliac for 70 years.

[Tizer1234]

My previous post of seeking direction in coping with the life changing gluton free diet. Thank you for your replies they have given me a mind set for the future.

My story may help others with the same condition. I spent around 4 years in the Birmingham childrens Hospital in Lady wood. It was in the early 1950's I was discharged in 1959 and told to follow a wheat free lifelong diet. No further contact with the medical profession. So in a nutshell I never ate bread cakes or biscuits.. I never attended a surgery or hospital for any kind of treatment until I was 57.

I have lived with my wife and family for over 50 years. I always had trouble with my abdomen area but thought it was something that I had eaten or drank that caused the problem. My wife was in the care profession and knew all about coeliac disease.

About 5 years ago when I was in my mid sixties I had a blood test. The doctor noted two High enzyme readings with my liver and low vitamin B12. Vitamin D readings. My liver got progressively worse and I was sent for a scan. I had a mild fatty liver. The doctors believed it was the symptoms of one of 4 cancers. I checked negative for all of them. I told the doctor I was a coeliac but he could not find any of my old medical records as they had been expunged. I was frustrated as all of this advice was over the telephone. He had a strong accent and I am hard of hearing.

So I studied my symptoms and decided to put myself on a gluton free diet so in April this year I commenced the diet. 3 months later I had my blood test and guess what my Liver as returned to normal and my vitamin readings returned to normal. My next check is in August fingers crossed. I believe this illness is very serious and needs 100% commitment. When I was a kid there were no supermarkets No sliced bread and there were no restaurants No take out meals. just cornflakes for breakfast and a bag of chips 4p in old money. OK there may have been a cooked dinner as well.

Keep fit

Tizer1234

[Whydothis]

Goodness me that sounds serious! I thought I had learned a lot about coeliac disease but I hadn’t connected it to liver disease. You are right about the need for 100% commitment - good health is precious and it is not worth taking any risks.

[Hidden]

The more I read about gluten the more I believe no one should have it in their diet. Linked to mental health disorders, other autoimmune conditions, nerve issues. Well done for nailing the cause yourself, and such a shame to have to go through batteries of tests when the answer was in front of you. Upwards and onwards with good health. Doctors just don't know enough about coeliac and really should start listening to their patients.

[Leils]

Thanks Tizer

That's really interesting. I'm glad you are doing ok now.

Yes I have to be strict too. And am on B12 treatment.

My Mum struggled too... and as you say it was harder then. In cafes she could only have a jacket potato.

Very grateful for all the info online and varied foods we have now, tho sadly there are a lot of other things that disagree with me too...!

But you can't go far wrong with plain meat and veg :0)

[nellie237]

Hi Tizer,

I was reading an article the other day about Coeliac only really being recognised in the 40's, so you must have been in the first group of people where they were able to identify the cause.....no wonder it took years. I doubt, and hope that today's children diagnosed will spend any time in hospital.

wyldsson.com/coeliac-diseas...

I'm guessing a lot have things have changed since your original diagnosis, and there must be many more things that we are now aware to avoid. Its a bit of a minefield out there for us, and we do have to be our own advocates. Well done for getting yourself well, and long may it continue.

Surprisingly, my liver results at diagnosis were excellent, better than they had been for a while. I did have horrible liver results after a heart attack, and it took about 3 years before they returned to normal. I check all my results online now, and that has given me access to my historical data too, which I find very useful.

[Tizer1234 in reply to nellie237]

HiFrom my recollection I was one of the first 6 patients in the Midlands. Professor Bubl'e diagnosed me in the early 1950.s. The illness coeliac has been around forever but the modern day illness was discovered in WW2 by a Dutch doctor. He noticed that when the black bread was rationed people with gut disorders got better.

Just got back from a weeks holiday. There were three coeliacs in the same hotel. You would be amazed how many people have put themselves on a gluton free diet. I noted at least two who just helped themselves to the gluton free stuff in the hotel just for a taster.

Any way nearly time to unpack just another 25 e-mails to scan read.

tizer1234

[nellie237]

I hope that you had a lovely break.

"I noted at least two who just helped themselves to the gluton free stuff in the hotel just for a taster." Ha ha, I'll bet they were disappointed then if it was breakfast toast or croissants etc

[HowNowWhatNow]

Hi TizerThe more I know about coeliacs and about the effects on a wide range of people of eating wheat, the more irrelevant the coeliac blood test seems to me.

Speaking to a gastroenterologist for my son 2 years ago, he said that the wheat / gluten intolerance condition could come with really severe symptoms. My son was IgA deficient - a condition that guarantees a negative coeliac result, whether you have it or not - and so I put him on a GF diet.

Still to this day, I can’t believe how many symptoms that he had had up to that point disappeared after just two or three weeks. Repeat respiratory / ENT infections of all kinds, skin problems, bowel problems, night sweats, anaemia, pains in the face, stomach and limbs, fatigue, reflux ... he was the kind of child of whom doctors always said “he’s got a lot going on”, but as soon as the gluten went away, so did all of these.

Because he doesn’t have a positive formal gluten test, GPs are inclined to give me the side eye when I tell him he’s wheat intolerant. And yet I’ve saved the NHS so much money just by changing his diet, because he’s no longer at the GP with some other random problem.

[Tizer1234 in reply to HowNowWhatNow]

hI

I fully understand your thought process. I have studied coeliac disease and it is my opinion there are different tolerances of this condition. I have the mild one ie I lived all my adult life without actually being on a diet. At 65 I took a blood test which showed low vitamin readings B12 &D3 my liver reading got worse. In lay mans terms I was anaemic. I had the onset of brittle bones and a potential of liver failure. I told the GP I was diagnosed a coeliac when I was a child He ignored this and was testing for one of 4 cancers around the gut area. I had lost 2 stone and I was panicking. I checked out everything on the illness and found that there are a possible 300 symptoms and could take 13 years to diagnose. No wonder doctors do not like this disease.

There is no medical treatment available. The only way I survived was the support of my wife and a strict gluton free diet. I started on the 10th of April and by June all my readings were normal. I am 6ft tall and weigh 14 stone interestingly my Blood pressure dropped to 115/63 before I was around 130/90. I eat very well and am looking forward. My next blood test is August 23. I do hope this will give you some positive direction.

[HowNowWhatNow]

It appears that the NHS does not take the coeliac condition into account until very late on these days. Do you know why you were kept in hospital for those years as a child, or how your wheat problem was first spotted?

[Tizer1234 in reply to HowNowWhatNow]

Yeah. I recall my mother telling me that when I was born I was unable to digest my food and so I had a bloated stomach and thin arms and legs. They initially thought I had a wasting illness. I was so ill I spent a long time in hospital until they diagnosed coeliac disease.I spent 4 years at least in hospital along with other coeliacs. The reason was given as strict observations and diet control.

I have had a patch of dry skin on my leg since I can remember. This can be very itchy. I believe although un diagnosed is a physical sign of coeliac disease. (research and verify for yourself)

Hope this helps

Tizer1234.

[HowNowWhatNow in reply to Tizer1234]

Thanks Tizer. Impressive care from the NHS at that point, to keep you in hospital. Must have been hard, being separated from your family. Strange that the condition was treated as such a medicalised one then and not is not treated like that at all.