Nottingham and Sheffield are about 30 miles apart. If you have neurological problems presenting as ataxia and live in Mansfield you can either go North to Dr Hadjivassiliou's group, who will undoubtedly work you up for gluten induced problems.
Or you can go South to The Queen's Medical Centre, where you may not get worked up in the same manner. In fact, this letter to the editor of the journal Brain is about as critical as respectable doctors get of each other in public.
It is particularly notable that the main reference cited by Wills and Unsworthy for the incidence of coeliac disease only tested antibody positive patients and only accepted them as coeliac if they had intestinal signs on biopsy. Clearly depending on EMA antibodies, as used in Cook's study, missed many patients so the incidence of intestinal coeliac disease MUST be underestimated.
"The value of EMA as a screening tool is therefore limited"
Still, an incidence of 1% is massively higher than was the accepted incidence 20 years ago. This estimate will continue to increase as people realise how widespread the problems from wheat are.
Backing away from intestinal disease as a pre requisite for gluten problems:
The whole point of Hadjivassiliou's work is that there may not be ANY gut signs with neurological gluten induced disease.
We know full well that the zonulin system in the gut is disrupted by gluten. This is irrespective of the presence of intestinal coeliac disease. Once the gut is permeable to proteins you can take your pick of auto immune diseases. If you get neurological problems AND gut problems Nottingham might accept that you have gluten ataxia. If you get neurological signs without gut damage then it's time to get in your wheelchair.
Sheffield will drive you to a gluten fee diet. It might just work.
If I lived in Mansfield and had some weird neurological disease, personally I'd head North to Sheffield.
Peter (Born in Nottingham but Sheffield is good, just don't take your car)
An amazingly astute post. How right you are. I live in Newark, Notts and remained an undiagnosed coeliac for *fifty one years* despite having every single classic symptom followed by every single atypical symptom. I was dying by degree. Eventually, as I started falling over and going blind, I managed to diagnose myself using nothing more than Google and desperate curiosity. I did not trust any hospital or surgery here to confirm the diagnosis, so I flew to Northern Ireland to see the coeliac expert (he knows who he is!). That probably saved my life. And yes, I was right. Biopsy and a modern blood test confirmed it. I received no apology from my medical team for the unnecessary operations or for anything else for that matter. THink of this - I suffered five separate episodes of gliadin shock - all attended by physicians - and not one recognised or treated it. Few in Notts seemed to care about me - not enough to discover what was wrong with me. And those that did care did bizarre things like take organs out - just to be doing something. I must have cost the NHS hundreds of thousands when I might have been cured after taking a ten quid blood test. The legacy of my illness is chronic fatigue, persisting ataxia etc etc. I am not intolerant to most food groups. I needn't have been ill at all. What a waste of my life. Doctors and surgeons of Nottingham, please rise to the challenge. SUSPECT COELIAC ALWAYS. It is a COMMON DISEASE. Ask yourself this: where are my adult coeliacs? Believe me they will be sitting under your noses in your waiting rooms, surgeries and wards, desperately ill, costing you a fortune. For pity's sake give them a blood test, or a biopsy, both or DO something. Anything. Track down coeliac disease no matter how it is manifesting or how hard it is to confirm. If all else fails impose a gluten-free diet and sit back for a week. The coeliac sufferer will come back from the dead and you will be a hero. And the diet won't harm anyone else in the slightest. I believe this is the most important blog post I have ever read. I have been coeliac for almost a year and have never met anyone else with the disease in this county. One in a hundred. I ask again - where are the adult coeliacs of Nottinghamshire?
ReplyDeleteI am NOW intolerant to most food groups! Typo.
ReplyDeletetoxic,
ReplyDeleteI can believe your story completely. One of the things I am so thankful for is that my wife presented with GI wheat intolerance well before either of us became seriously ill with atypical coeliac issues. You have not been so lucky... I guess you realise I think NO ONE is safe with gluten, but some get hammered harder than others.
Good luck
Peter
Hi Peter,
ReplyDeleteThought you might like to see this, if you haven't already. I have no idea why anyone queries the gluten and ataxia connection. I regained the ability to walk (albeit not in a very straight line!) and to see again. Seriously, are the doubting doctors mad?
>>>Gerald Grossman From:
April 2008
Neurological complications of coeliac disease: what is the evidence?
WHAT DO WE DO NOW?
"While we wait for more definitive studies to be done, what should be the strategy of the practical neurologist? The everyday practise of medicine requires weighing costs and benefits for each individual patient under conditions of uncertainty, with inadequate data. When faced with these dilemmas, we often consider most the concept of harm. We are more willing to propose a therapy with lower degrees of
evidence of therapeutic efficacy when the severity of the neurological illness produces significant pain or disability, and the potential harm of the treatment is low.
Therefore, when faced with a patient who has progressive disability due to ataxia or neuropathy of unknown aetiology or uncontrolled seizures, it is reasonable to discuss with the patient the inadequacy of our knowledge, but offer evaluation for coeliac disease, including anti-tTG, anti-EMA and AGA, as well as a confirmatory intestinal biopsy if the antibodies are positive.
Dietary treatment can be offered to those with either classical coeliac disease (with positive intestinal biopsy) or those with positive serology alone, as long as the patient understands we have no definitive clinical trial data that a gluten-free diet will improve neurological function either in patients with classical coeliac disease or those with just positive serology."<<<
Hi Toxic,
ReplyDeleteLooks like there is a way to go. This raises a number of very interesting aspects. Obviously the first concern should be to do no harm. One has to ask what harm can result from the complete and total elimination of gluten, possibly extending that to all grains. The answer appears to be zero harm. No problem there.
The second problem is the lack of knowledge of the function of the immune system by neurologists. No antibodies=no problem. No villous atrophy=no coeliac disease. This is much more difficult. I'm not sure how many neurologists know anything about the innate immune system and the functioning of natural killer cells in the lymphocyte population, the roll of MIC in targeting attack or the roll of gluten in triggering non immune cells to express MHC class II molecules presenting gluten peptides to NK cells. The concept that no antibody=no disease is very deeply ingrained and is a major failing, probably due to the specialisation in the medical profession. It also seems impossible for many to conceive of extra-intestinal problems without intestinal disease. But what would you expect a neurologist to know about gastroenterology? Only what they are told, I suspect. Not always correct.
It is also pretty obvious that many people, especially those who are seriously ill, are unwilling to go beyond the care given to them by their consultant. It must come very hard to realise that the person in who's hands your life rests is either ignorant or in disagreement with other equally qualified medics about a totally non toxic therapy that works in a far higher percentage of patients than simply doing nothing.
And lastly there is the simple disbelief that eating bread can kill you. Everyone eats bread! Not everyone gets gluten ataxia. People just don't believe it's possible, consultant neurologists are obviously high on the list, but patients are not expected to know about the immune system. The occasional slice of bread might be seen as "naughty" or a "cheat", but really, could it do any harm? Then when you realise that you can't eat most crisps, most pub chips, pork scratchings, almost no pre prepared food, only certain very restricted types of chocolate and soy sauce etc etc etc people tend to baulk at the idea. Few doctors realise what is probably needed too. Things actually go WAY beyond using rice bread instead of Hovis.
So what do you do?
Ultimately the cognoscenti always do better than the ignorant. Knowledge is crucial. I think there is increasing knowledge available thanks to Pubmed, plus a few of the better internet sites, but there is still a looooong way to go.
I'm glad to hear you're doing well, walking a wobble sounds much better than wheeling a wheelchair!
Peter
Peter, I'm going through all your posts from the beginning and I'm having a ball. Thanks for the introduction to the work 'congnoscenti'!
ReplyDeletep.s. the link to your post on insulin resistance was gone.
p.s.s. good luck with your move.
Enjoy Nick,
ReplyDeleteLinks do break occasionally. The ones to Pubmed are usually safe but anything newspaper derived is potentially unstable and quite a few of the posts start with press releases...
Peter
Toxic, God knows how to contact you on here..completely sympathise with your story as a 30yr old male in a v similair situation. With regards to being intolerant to most food groups it most likely due to dysbiosis of the gut..years of having undigested food in the colon tends to do this..there is an alergy clinic in surrey called 'the burghwood clinic' which may be able to help you out..
ReplyDeletehttp://www.burghwoodclinic.co.uk/
they tend to use diet and nystatin to great effect to resolve food intollerances.
dr michael tettenborn has some experience of using a gluten free diet to treat autistic children with nystatin..again dysbiosis. just a thought. David. (weetabix)
It is amazing to know that so many people have the same difficulties and can find help so efficiently. I would never have thought that gluten could really cause people that many problems. I think if I lived within the region where these doctors work I would probably pursue one of their practices too.
ReplyDeleteHi BekahK,
ReplyDeletePeople do fix themselves, but they have to look for the answers... You have to be very lucky for your doctor to do it for you, but it does happen.
Peter
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ReplyDelete