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Tumshie

Coeliac Awarenesses Week

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Some common myths about Coeliac. 

 

‘Coeliac disease is rare’

Research shows that coeliac disease affects 1 in 100 people in the UK, making it much more common than previously thought. Under diagnosis is a big problem and research suggests around 500,000 people have not yet been diagnosed.

 

‘Coeliac disease is a food allergy’

Coeliac disease is not a food allergy or an intolerance, it is an autoimmune disease. In coeliac disease, eating gluten causes the lining of the small intestine to become damaged. Other parts of the body may be affected. 

 

‘You have to have gut symptoms such as diarrhoea to have coeliac disease’

Coeliac disease is known as a 'multi-system' disorder - symptoms can affect any area of the body. Symptoms differ between individuals in terms of type and severity. Read more on symptoms if coeliac disease.

 

‘Only children get coeliac disease’

Coeliac disease can develop and be diagnosed at any age. It may develop after weaning onto cereals that contain gluten, in old age or any time in between. Coeliac disease is most frequently diagnosed in people aged 40-60 years old. Delayed diagnosis is common and our research shows the average time it takes to be diagnosed is 13 years. 

 

'You have to be underweight to have undiagnosed coeliac disease’

Recent research suggests that most people with coeliac disease are of normal weight or overweight at diagnosis. Body weight alone should not be used to decide whether or not you should be tested for coeliac disease. 

 

‘You can ‘grow out’ of having coeliac disease’

Coeliac disease is a lifelong condition. The gluten-free diet is the only treatment for coeliac disease. If gluten is introduced back into the diet at a later date, the immune system will react and the gut lining will become damaged again. If someone following a gluten-free diet is retested for coeliac disease (antibody blood test, gut biopsy) it would be expected that the tests are negative. This means they are responding well to the gluten-free diet. There are no antibodies in the blood because there is no gluten for the immune system to react against. Taking gluten out of the diet allows the gut to heal.

 

‘A breadcrumb won’t hurt someone with coeliac disease’

Even very small amounts of gluten can be damaging to people with coeliac disease. Therefore, taking sensible steps to avoid cross contamination with gluten is important.

 

https://www.coeliac.org.uk/coeliac-disease/myths-about-coeliac-disease/

 

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4 hours ago, Tumshie said:

 

Whether you think you have it or not have a go at this quiz

Just done the test. I seem to have passed. It is the first test I have passed in years.

 

Seriously. Good post, have a greenie (gluten free of course).:)

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That's good to hear. So your lovely soft fluffy sandwiches are still safe to eat.

 

 

 

 

Ya lucky sod. :glare:

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14 minutes ago, Tumshie said:

So your lovely soft fluffy sandwiches are still safe to eat

Dunno about that, Mrs Rusty's rock bread takes some digesting!

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9 minutes ago, rusty69 said:

Dunno about that, Mrs Rusty's rock bread takes some digesting!

Probbly makes quite a good projectile too if she happens to read your open laptop. ?

 

 

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As a doctor I can confirm that Coeliac is under-diagnosed BUT the reason for this is not simply lack of GP education.  Yes there is an element of this but part of the problem is also that media 'awareness' has made this quite a popular condition to claim to have.  Anecdotally I would say about 10% of the patients I see with GI conditions will claim to be Coeliac even though as mentioned by the OP the true rate in the population is around 1% (so it is uncommon - I wouldn't use the word rare.)  The other problem is that the only truly reliable way to diagnose is via invasive biopsy and with the serology tests there is always (currently) going to be 100,000 or so going un or miss-diagnosed.

 

GP education on Coeliac is pretty good but pressures on the NHS system mean that they have to play the probability game and the bottom line is the vast majority of patients will not have Coeliac and have to be managed accordingly.  That said and by all means (and especially if you have a family history of diagnosed Coeliac) if you feel you have severe symptoms 'push' the GP to have a test.  They should not refuse your request and if they do request to change your GP. 

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8 hours ago, JJPHG said:

As a doctor I can confirm that Coeliac is under-diagnosed BUT the reason for this is not simply lack of GP education.  Yes there is an element of this but part of the problem is also that media 'awareness' has made this quite a popular condition to claim to have.  Anecdotally I would say about 10% of the patients I see with GI conditions will claim to be Coeliac even though as mentioned by the OP the true rate in the population is around 1% (so it is uncommon - I wouldn't use the word rare.)  The other problem is that the only truly reliable way to diagnose is via invasive biopsy and with the serology tests there is always (currently) going to be 100,000 or so going un or miss-diagnosed.

 

GP education on Coeliac is pretty good but pressures on the NHS system mean that they have to play the probability game and the bottom line is the vast majority of patients will not have Coeliac and have to be managed accordingly.  That said and by all means (and especially if you have a family history of diagnosed Coeliac) if you feel you have severe symptoms 'push' the GP to have a test.  They should not refuse your request and if they do request to change your GP. 

Thanks for your post. There is also a big problem in the UK in being " Trendy " its true to say that having a claimed " allergy " which coeliac is perceived by many as being is on the up. We, on a regular nearly daily basis were asked if we did gluten free cake, to which we replied NO. Lots of people actualy believe a gluten free diet even if not a coeliac sufferer is better for them. Just to let people know that the main reason we didnt do gluten free is we had a tiny kitchen and it would have been impossible to comply with legislation re selling supposed gluten free products safely to genuine coeliac sufferers. Another trend at the moment, although a tiny percentage is the religion of " Veganism " My son in his pub is " acrredited " and offers some gluten free food, he has a very large catering operation with the space and training to know what he is doing. It must drive genuine sufferers round the bend when the latest trendy diet surfaces somewhere in London!!

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Before I lay in about JJPHG :D let me just assure anybody reading this thread that I have taken ALL the information from very reputable sources, and that all I hope to achieve from this thread is to raise awareness that there is more to having a gluten intolerance than just the classic symptoms. My intention is to keep posting reputable information as a way of bumping this thread to keep it noticeable for the duration of Coeliac UK awareness week. 

The relief I found from a gluten free diet was so immense that if during this awareness week anybody recognises their symptoms and makes the connection then this thread will have been worth it's weight in platinum. 

 

9 hours ago, JJPHG said:

As a doctor I can confirm that Coeliac is under-diagnosed BUT the reason for this is not simply lack of GP education. 

As a doctor it's in your best interest to assume that all GP are well educated but like any profession you get good practitioners and not such good ones too. I did not say that under diagnosis was simply lack of education, I said that GPs don't always keep up to date; if you want to split hairs then you're right I probably should have said some GPs but I thought I was covering that when I said don't always. BUT as a patient who has run the gluten gauntlet I can confirm that GPs do not always understand Coeliac/Non-Coeliac Gluten Sensitivities. Lets pretend for this instance that GPs do keep themselves 100% up to date with all the latest information, then it is my experience that all too many of them are woefully lacking in the skills to take that education off the page and apply it in real life. 

 

 

9 hours ago, JJPHG said:

Yes there is an element of this but part of the problem is also that media 'awareness' has made this quite a popular condition to claim to have. 

I'm not sure what media "awareness" you're referring to and I wouldn't like to make assumptions. I do understand that there's the gluten free fad thing that everybody is banging on about BUT for the life of me I can't work out why you would think that Coeliac/Non-Coeliac Gluten Sensitivity/IBS are "popular conditions" - My lactose free milk is 4x more expensive than regular milk, even if I buy the cheapest GF bread, which is quite frankly like eating sawdust, it's 5x more expensive, 7x more if I want to eat bread doesn't disintegrate if I just show it a butter knife, and as for EVER eating out that just doesn't happen because I can not take the risk that even one person working in the kitchen doesn't fully understand what cross-contamination is - media "awareness" has also made anti-vaxxers quite popular but I can assure you my autoimmune disorder is quite real. 

 

 

9 hours ago, JJPHG said:

Anecdotally I would say about 10% of the patients I see with GI conditions will claim to be Coeliac even though as mentioned by the OP the true rate in the population is around 1% (so it is uncommon - I wouldn't use the word rare.) 

If your patients are anything like me then when they tell you they think they've got XXXX then they may well be grasping at straws desperately trying to describe to you what they know is wrong but don't understand. After seven years of a living hell and being constantly dismissed by numerous GPs, I sat in front of one GP sobbing with exhaustion and frustration knowing full well that something was wrong with me but completely unable to communicate this to any doctor, and told him that I was frightened that I had ME or MS or Fibromyalgia, I also told him that I had no idea what these things were but that I was using them as a way to relay how I felt and just how bad it was for me; he waved his hand and told me I was probably just over tired and that it would pass. It wasn't until years later that I found out that every time a doctor waves his hand and tells you "Och, it'll pass," they don't write this in your notes so when ever I saw a new GP or a specialist they had no idea that this had been going on for years. 

 

And no we are not all trawling google to find things that might be wrong with us. 

 

10 hours ago, JJPHG said:

GP education on Coeliac is pretty good but pressures on the NHS system mean that they have to play the probability game and the bottom line is the vast majority of patients will not have Coeliac and have to be managed accordingly.

It takes on average 13 years from the time that someone starts to feel/get the first symptoms to when they get a diagnosis. Obviously that is an average so there are people out there with different time scales. I personally have cost the NHS considerably more than I would have done if the first, second, third, or even fourth GP that I went to see had either taken that education that you assure us they have and applied it where it was needed or had taken me more seriously and not been so ready to dismiss my understanding of me out of hand. 

 

10 hours ago, JJPHG said:

The other problem is that the only truly reliable way to diagnose is via invasive biopsy and with the serology tests there is always (currently) going to be 100,000 or so going un or miss-diagnosed.

This part is true and I intend to post a little bit about it shortly - though I will find info that will give a more rounded view of the process and therefore a little less scary. There is no way to know for certain that you have Coeliac unless you have first the blood test and then the biopsy. If you feel that you have good reason to have these tests done you can insist on this, if your GP is not helpful then you can contact Coeliac UK and they will give you advice on how you can proceed. 

 

https://www.coeliac.org.uk/home/

 

 

 

 

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On 11/05/2019 at 15:04, Tumshie said:

Or take the quiz to give you a better understanding of what you need to look for. 

 

https://isitcoeliacdisease.org.uk/#

 

 

That site requires me to give personal identity information before I can even see what questions are asked. So I am not going to take the quiz. And nor, I imagine, are quite a lot of your target audience.

If I could take the quiz anonymously, and then if the result is positive, provide the information for a GP referral I would be more inclined to proceed.

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8 hours ago, mrsmelly said:

Thanks for your post. There is also a big problem in the UK in being " Trendy " its true to say that having a claimed " allergy " which coeliac is perceived by many as being is on the up. We, on a regular nearly daily basis were asked if we did gluten free cake, to which we replied NO. Lots of people actualy believe a gluten free diet even if not a coeliac sufferer is better for them. Just to let people know that the main reason we didnt do gluten free is we had a tiny kitchen and it would have been impossible to comply with legislation re selling supposed gluten free products safely to genuine coeliac sufferers. Another trend at the moment, although a tiny percentage is the religion of " Veganism " My son in his pub is " acrredited " and offers some gluten free food, he has a very large catering operation with the space and training to know what he is doing. It must drive genuine sufferers round the bend when the latest trendy diet surfaces somewhere in London!!

Sadly you are right here that a small percentage of people perceive certain conditions to be trendy and jump on the band wagon which must really annoy genuine sufferers. 

 

However the vastly improved selection of gluten free products Available at supermarkets due to the latest gluten free fad must he a God send to genuine sufferers. 

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59 minutes ago, David Mack said:

That site requires me to give personal identity information before I can even see what questions are asked. So I am not going to take the quiz.

Yes it does, the site belongs to Coeliac Uk if that gives you any comfort, however ultimately it is your prerogative whether or not you wish to do the quiz.

 

59 minutes ago, David Mack said:

And nor, I imagine, are quite a lot of your target audience.

I don't have a target audience, I'm just posting the information and people can do what they like with it. Someone once took the time to mention in passing something that lead me to a life changing diagnosis, I'm just passing that on. 

 

I do know through private conversations that some people even though they have found the thread interesting chose not to participate in anything that requires their personal details, some have done the quiz and been relived to find the don't need to worry, but also some have done the quiz and been quite surprised to find that they have been advised to talk to their GP. 

 

59 minutes ago, David Mack said:

f I could take the quiz anonymously, and then if the result is positive, provide the information for a GP referral I would be more inclined to proceed.

If you feel strongly that you may have some of the symptoms that I've mention in the first post then you could just go directly to you GP, if you feel that your GP might not be open to this discussion then taking the quiz will give you a summary of your results and an offer to send you an email of them that you can print off and give to your GP. 

 

 

Edited by Tumshie

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I'm just going to pop up some interesting YouTube videos I found on the CUK YT channel. 

 

 

 

And two short videos that Caroline Quentin did for CUK and ITV's This Morning 

 

 

 

 

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14 hours ago, Tumshie said:

As a doctor it's in your best interest to assume that all GP are well educated but like any profession you get good practitioners and not such good ones too. I did not say that under diagnosis was simply lack of education,

Alas, as I am also an examiner for GP's  progressing to their fellowship I can only say that in my own personal view (which of course does not reflect that of my employer/college etc etc etc), the standard of education has dropped markedly over recent years.  Partly because of the push to increase doctor numbers (which can only really be achieved in the short term by lowering the acceptance standard) and partly because those, like myself, have had enough and abandoned GP land (ok - only partly in my case).  What I was trying to allude to is that the education for GP's on Coeliac is pretty good, comparatively.  But of course education and understanding do not mean the same thing and if you lower the standard of education you are also, probably, going to lower the standard of understanding.

14 hours ago, Tumshie said:

I sat in front of one GP sobbing with exhaustion and frustration knowing full well that something was wrong with me but completely unable to communicate this to any doctor

So sorry to hear this.  You touch on what I personally feel is one of the major issues facing GP's these days and that is the ability to communicate.  GP's are increasingly being taught to diagnose based almost exclusively on clinical symptoms and probabilities rather than the less 'algorithmic' skills of interpretation and the ability to engage with the patient to draw out the salient aspects of their condition.  Maybe I'm just becoming one of those grumps bemoaning the abilities of the younger generation.

Edited by JJPHG
spelling (those that I spotted anyway)
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It's official - Sheffield is the centre of the universe...... or at least it is for Coeliacs.

 

Professor David Sanders is one of the most knowledgable people on the subject of gluten and Coeliac Disease. I found the talk he did at the university of Sheffield very interesting so I have included it here, he has also written a book called Gluten Attack, but I've only just bought it so I can't comment on it yet. 

 

http://www.profdavidsanders.co.uk/#home

 

 

 

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No, I don't care; being gluten free can be a little hard work, so this post is for me..... but there are options for sharing. 

 

iu.jpeg

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So just to keep thinks interesting I thought I'd find you some fun facts and some science and then lastly some fun science. 

 

First the fun facts

 

 

Now some science

 

So when you're cooking what does gluten do and why do we need it? And what can we do if we can't eat it. 

 

 

And a bit more science but with a fair dollop of silly fun. 

 

 

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On 13/05/2019 at 02:19, JJPHG said:

So sorry to hear this.  You touch on what I personally feel is one of the major issues facing GP's these days and that is the ability to communicate.  GP's are increasingly being taught to diagnose based almost exclusively on clinical symptoms and probabilities rather than the less 'algorithmic' skills of interpretation and the ability to engage with the patient to draw out the salient aspects of their condition.  Maybe I'm just becoming one of those grumps bemoaning the abilities of the younger generation.

I do have quite a bit of sympathy for the GP's when dealing with 'gut' problems as there are so many causes of the problems many of which present with very similar problems and many of which are difficult to diagnose because of this and the fact that for a long time no real tests were available and the knowledge base was low. 

I Personaly have had, due to a large overdose of antibiotics many years ago , many things that are now being investigated such as SIFO, SIBO, ME, Ulcers, depression, carbuncles, chronic athletes Foot and, over the years, many other autoimmune type illnesses. Unfortunately these were before their was any real knowledge or research into many of these areas. I also have 2 relatives with diagnosed Celiac disease and have some understanding of the devistating effect this can have if not treated correctly. 

Because of this I support another charity called Guts UK which takes a broader view on gut problems and assists in research funding, however I don't want to take away from this threads focus on celiac week (and to be honest I can bore you to death on  the gut and particularly the gut-brain connection works). Personaly I am happy that the trend is now moving towards a greater understanding of these problems and if people are reducing the gluten because it makes them feel better then all well and good even those that confuse gluten intolerance, which can have many levels of severity, with Celiac disease. If it works for them then that has to be good even those that are doing the right thing for, possibly, the wrong reasons. 

This is a very large subject which fortunately is now receiving some overdue attention. Good look to Tumshie with your celiac campaign awarness push, well done. 

 

Edited by reg

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19 hours ago, Tumshie said:

No, I don't care; being gluten free can be a little hard work, so this post is for me..... but there are options for sharing. 

 

iu.jpeg

It would start all innocent snogging and then you would lose control and end up dragging his dismembered bits all jointed to BBQ under your bridge

Edited by tree monkey
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17 minutes ago, reg said:

Because of this I support another charity called Guts UK which takes a broader view on gut problems and assists in research funding, however I don't want to take away from this threads focus on celiac week (and to be honest I can bore you to death on  the gut and particularly the gut-brain connection works).

Quite frankly Reg I think so long as there is good science involved then there is room for every one. ?

 

17 minutes ago, reg said:

This is a very large subject which fortunately is now receiving some overdue attention. Good look to Tumshie with your celiac campaign awarness push, well done. 

I'm sorry to hear how complicated things have been for your health but thank you very much for your support and encouragement. I very much appreciate it. 

 

And for anybody wondering about Reg's guts you can find them here, because there is more to our innards than it might first seem.

 

https://gutscharity.org.uk

 

 

Edited by Tumshie

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