Anyone on here with Coeliacs disease?
Discussion
It's easy to diagnose, takes a blood test which can take a while to get results as not all hospitals do the tests and then if confirmed by blood test a small biopsy to confirm 100%.
Can't tell you the symptoms but my 2 year old niece has been diagnosed recently, stomach bloating, weight loss, abdominal pain, diarrhoea. I really hope you don't have it as it is a huge lifestyle change.
Can't tell you the symptoms but my 2 year old niece has been diagnosed recently, stomach bloating, weight loss, abdominal pain, diarrhoea. I really hope you don't have it as it is a huge lifestyle change.
If you had Coeliacs or Ulcerative Colitis believe me you'd get a diagnosis pretty quick,unless you're very unlucky.Lifestyle change,whilst true, is an understatement.An operation to
remove part of your bowel, then a stoma is created,then you wear a bag.Another operation to create a new bowel (reattachment) and possibly liquids for life is the next step..
remove part of your bowel, then a stoma is created,then you wear a bag.Another operation to create a new bowel (reattachment) and possibly liquids for life is the next step..
K77 CTR said:
Coeliac disease is manageable by lifestyle changes as is ulcerative colitis to an extent. Huge operations are the exception to the rule and not the norm, no need to scare the OP.
All relative though,isn't it.I know someone with Ulcerative Colitis whose life has been made miserable,and she's considering the op."Huge operations"... Now whose scaring the OP?
I have/had UC, i think the figure is 3% of people don't respond to any medication. So i've been there ,done that ,got the bag ,the t-shirt ,sing the theme tune ,write the theme tune etc etc. Total colectomy 18 months ago.
From a quick wikipedia search as coeliacs is your small intestine its further UP so i guess harder to diagnose from that sense. I had a rigid sigmoidoscopy and they knew straightaway it was colitis. I then had 2 further flexible sigs and biopsies taken, i think the biopsies were mostly to check for the big C. To get to your small intestine i think its going to be a colonoscopy. They do give you some nice drugs though which makes it bearable.
You can pretty much guess the diet side of things, cut out fags, booze, coffee, etc. Never heard of liquids only but any roughage won't be pleasant and i found cutting out ANY dairy made my life easier.
If you haven't already get your GP to refer you to the gastro consultant sharpish. They can get you on to meds quickly to try and control it. As i said before its a small percentage that don't
Without wishing to sound like a t
t have you tried aloe vera juice? I discounted it as snake oil after seeing all the pop up adverts on the web. However i tried it for the last few months before the op and although it didn't cure me it made my life a little more comfortable.
What i've written above is only my personal experience, i'm not a medical expert so if i've got some of the facts wrong i apologise in advance. I'm sure one of the Ph docs will be along in a minute to correct me.
From a quick wikipedia search as coeliacs is your small intestine its further UP so i guess harder to diagnose from that sense. I had a rigid sigmoidoscopy and they knew straightaway it was colitis. I then had 2 further flexible sigs and biopsies taken, i think the biopsies were mostly to check for the big C. To get to your small intestine i think its going to be a colonoscopy. They do give you some nice drugs though which makes it bearable.
You can pretty much guess the diet side of things, cut out fags, booze, coffee, etc. Never heard of liquids only but any roughage won't be pleasant and i found cutting out ANY dairy made my life easier.
If you haven't already get your GP to refer you to the gastro consultant sharpish. They can get you on to meds quickly to try and control it. As i said before its a small percentage that don't
Without wishing to sound like a t
t have you tried aloe vera juice? I discounted it as snake oil after seeing all the pop up adverts on the web. However i tried it for the last few months before the op and although it didn't cure me it made my life a little more comfortable.What i've written above is only my personal experience, i'm not a medical expert so if i've got some of the facts wrong i apologise in advance. I'm sure one of the Ph docs will be along in a minute to correct me.
Thing is though there are varying levels of this. There is out and out coeliac which is picked up in blood tests but also gluten intolerance which isn't picked up by blood tests but which can be pretty horrible.
I found out three months ago that I'm gluten intolerant. I couldn't understand why I was in good physical shape (gym, running) but getting stomach cramps and bloating. Also I was feeling sick immediately after eating and, to not go into too much detail, bowel habits were "variable". There were also dermatological manifestations and difficulty breathing especially at night. The breathing thing was particularly frustrating because the doctors said it was due to panic attacks
.
After cutting out all wheat products things have dramatically changed, a complete turnaround. Now it's gluten free bread for breakfast with banana (no more cereal not even oats, though not strictly gluten) and the rest of the time fish, meat, potatoes, rice and vegetables. It does mean you eat pretty healthily becuase when you imagine what that wheat product is going to do to you you just don't eat it.
You do have to be careful though as there is gluten hidden in a lot of things. Always check out label before eating something.
Try a gluten free diet for a week OP and see what happens.
I found out three months ago that I'm gluten intolerant. I couldn't understand why I was in good physical shape (gym, running) but getting stomach cramps and bloating. Also I was feeling sick immediately after eating and, to not go into too much detail, bowel habits were "variable". There were also dermatological manifestations and difficulty breathing especially at night. The breathing thing was particularly frustrating because the doctors said it was due to panic attacks
.After cutting out all wheat products things have dramatically changed, a complete turnaround. Now it's gluten free bread for breakfast with banana (no more cereal not even oats, though not strictly gluten) and the rest of the time fish, meat, potatoes, rice and vegetables. It does mean you eat pretty healthily becuase when you imagine what that wheat product is going to do to you you just don't eat it.
You do have to be careful though as there is gluten hidden in a lot of things. Always check out label before eating something.
Try a gluten free diet for a week OP and see what happens.
If you want a definite diagnosis then DON'T try stopping gluten for a while, see what happens and then go to your doctor. Because then the antibodies that they test for are likely to be negative, and even if you do have coeliac disease then it might not show up.
Carry on eating gluten, go to the doctor, antibody test, if that is positive then a scope will be able to see changes on the intestine lining and you'll get a diagnosis. Continuing to eat gluten for a few more months will have little lasting damage; missing a diagnosis of coeliac disease by making the above mistake will.
Carry on eating gluten, go to the doctor, antibody test, if that is positive then a scope will be able to see changes on the intestine lining and you'll get a diagnosis. Continuing to eat gluten for a few more months will have little lasting damage; missing a diagnosis of coeliac disease by making the above mistake will.
Edited by turbolucie on Tuesday 14th June 10:29
What I learnt was this:
1. Have blood test
If positive result
2. Gluten free diet
If problems resolve it is Ceoliac Disease (gluten intolerance).
Coeliac disease causes a characteristic change in the lining of the small intestine which can seen on a biopsy sample taken during a upper gi endoscopy. In the bad old days the next step would be to then eat gluten again for two weeks then have the biopsy. This is pointless because steps 1 and 2 are sufficiently accurate that if they both indicate Ceoliac then it is. No need to actually do harm to prove what was already obvious. But unfortunately doctors like their pretty slides so it is still done in some places.
patient.co.uk is an excellent place to start for information.
1. Have blood test
If positive result
2. Gluten free diet
If problems resolve it is Ceoliac Disease (gluten intolerance).
Coeliac disease causes a characteristic change in the lining of the small intestine which can seen on a biopsy sample taken during a upper gi endoscopy. In the bad old days the next step would be to then eat gluten again for two weeks then have the biopsy. This is pointless because steps 1 and 2 are sufficiently accurate that if they both indicate Ceoliac then it is. No need to actually do harm to prove what was already obvious. But unfortunately doctors like their pretty slides so it is still done in some places.
patient.co.uk is an excellent place to start for information.
It does make sense to do it that way but in some cases (eg mine) the effect is so obvious when you cut out the gluten that you wouldn't go back to eating it anyway.
On a few occasions the symptoms have come back and I've subsequently discovered I had eaten gluten by mistake (Kikoman soy sauce). On cutting out that product the symptoms then disappeared again.
On a few occasions the symptoms have come back and I've subsequently discovered I had eaten gluten by mistake (Kikoman soy sauce). On cutting out that product the symptoms then disappeared again.
My OH has had it all her life, and unfortunately back in the day it was less commonly diagnosed so it was only when she was 7 or 8 they finally found the problem. Unfortunately it means the damage is definitely permanent and she's now very sensitive, so much so that simply stirring GlutenFree pasta with a spoon that's been used to stir "normal" stuff would be noticeable to her.
She is amazing however as she has always approached it with the theory that there are many worse things to have to deal with, and the difference in public awareness and mainstream foods is increasing all the time. Although it is of course something that's a constant in her/our life...it's totally manageable, and not really an issue at all for the vast majority of the time.
My advice would be to get diagnosed properly and be 100% sure that it is Coeliac disease before changing diets etc, especially as there are many other potential reasons for getting similar symptoms. Either way good luck!!
Edited to add: Can I really use the term "Back in the day" to describe the 80s? ...... Yep, seems ok to me
She is amazing however as she has always approached it with the theory that there are many worse things to have to deal with, and the difference in public awareness and mainstream foods is increasing all the time. Although it is of course something that's a constant in her/our life...it's totally manageable, and not really an issue at all for the vast majority of the time.
My advice would be to get diagnosed properly and be 100% sure that it is Coeliac disease before changing diets etc, especially as there are many other potential reasons for getting similar symptoms. Either way good luck!!
Edited to add: Can I really use the term "Back in the day" to describe the 80s? ...... Yep, seems ok to me
If your GP isn't that helpful there are a number of company's that specialise in gluten tests, if you are diagnosed then the coeliacs society is very helpful.
My son has been a coeliac from birth, which has led my wife to establishing a gluten free cake company because of the overall poor selection and quality of gluten free food available.
If you'd like any information about gluten free diets or coeliac then please feel free to email me as we have built up an extensive library over the years.
My son has been a coeliac from birth, which has led my wife to establishing a gluten free cake company because of the overall poor selection and quality of gluten free food available.
If you'd like any information about gluten free diets or coeliac then please feel free to email me as we have built up an extensive library over the years.
I was diagnosed with Coeliac disease in 1988 at the age of 30 - I had suffered from fatigue, anaemia, stomach upsets and being underweight all my life, with an old school GP probably ignorant of the condition. In those days there were very few gluten free products available other than on prescription, and they were all pretty grim. Following a GF diet transformed my life, with a rapid increase in weight (including muscle!) and energy and much improved general health.
Diagnosis is far more straightforward nowadays with the pretty reliable blood test - both my children were diagnosed in 2006, with a gastroscopy and biopsy confirming the blood test results. There is a much improved range of products available now, both on prescription and off the supermarket shelf, and legisaltion regarding product labelling is a real boon. With 3 of us suffering from CD in a household of four, we all follow a largely gluten free diet, with chocolate Hob-Nobs my wife's one indulgence! Following a GF diet is pretty straightforward, provided you plan ahead, and are prepared for a pretty long discussion with restaurant staff when ordering. Mistakes do happen, with a day lost due to stomach upsets and vomitting the normal consequence.
As has already been advised, do not avoid gluten before taking the blood test (and the biopsy) and the Coeliac Society is of great assistance.
Diagnosis is far more straightforward nowadays with the pretty reliable blood test - both my children were diagnosed in 2006, with a gastroscopy and biopsy confirming the blood test results. There is a much improved range of products available now, both on prescription and off the supermarket shelf, and legisaltion regarding product labelling is a real boon. With 3 of us suffering from CD in a household of four, we all follow a largely gluten free diet, with chocolate Hob-Nobs my wife's one indulgence! Following a GF diet is pretty straightforward, provided you plan ahead, and are prepared for a pretty long discussion with restaurant staff when ordering. Mistakes do happen, with a day lost due to stomach upsets and vomitting the normal consequence.
As has already been advised, do not avoid gluten before taking the blood test (and the biopsy) and the Coeliac Society is of great assistance.
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