Hi, I've just discovered Prof Marios Hadjivassiliou, thanks to Thurgolady. He was working out of the Sheffield Institute of Gluten-Related Disorders in 2013. Does anyone know if he is still there or, even better, has anyone here ever had a consultation with him?
I think I have a neurological form, or expression, of coeliac disease and I am unable to get any assistance from standard neurologists or my GP, none of whom believe in the possibility of this being an autoimmune problem. My condition has a name - trigeminal neuralgia - and a drug to 'treat' it (i.e. stop the pain, not cure it), so the medical profession is done with me, as in not interested, but I have uncovered a whole battery of autoimmune conditions in myself, which I believe are associated and strongly indicate a bigger autoimmune problem. Now, however, I am reaching the end point for tests that can be performed via my GP and it is getting very difficult to get the kind of specialist approach I need. Conventional gut-related coeliac tests are not particularly helpful to me, and as the Sheffield Institute of Gluten-Related Disorders is the only one of its kind I feel it may offer me the only help available.
If anyone has had any contact with him, or knows anything about how to approach him, I'd be most grateful. Thanks!
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I've never had the need to track down Marios Hadjivassiliou myself; although I first came across him when he did a talk for Tom O'Bryan's Gluten Summit about 18 months ago.
I would suggest that if he is still around, he is possibly traceable at The Royal Sheffield Hallamshire hospital or could have links to the University of Sheffield. He's definitely listed as a Professor and a Consultant Neurologist in the Gluten Summit blurb. Maybe an email or phone call to either institution might elicit more information?
He created the SIGReD organisation (Sheffield Institute for Gluten Related Disorders), along with a colleague (Dave Sanders - who is a Consultant Gastroenterologist); so I'm not sure how much he actually works for it in his day to day life.
This info may not have been quite what you had in mind, but I hope it helps you.
Thank you, Regalbirdy. I had barely written this when I discovered the person who had recommended him was in fact a patient. That'll teach me to ask first! He is still at Hallamshire hospital so I should hopefully be able to write to him there.
That's a greatly interesting looking study, obryan. Unfortunately it's just the abstract and the original is a paid-for piece, and it's in French. I'm going to try and track it down though. I think that's the first time I've ever actually seen the words coeliac and trigeminal neuralgia in the same study. Actually, I must try searching for that in pubmed. Why haven't I thought of that before? (Slaps head and gives self lines.) Thanks again for the inspiration. Good job one of us is thinking.
I see the prof . He is extremely busy and you have to wait a long time for appointments and results are normally sent to you by post . I normally see him once every 6 months . I live in Sheffield so don't know if this helped with access to him . He doesn't do any private work so you would have to join his waiting list . I have Cerebellar atrophy this is why I was referred by another Neurologist at the Hallamshire .
Hi Motherelle. I confess I had to look cerebellar atrophy up. Was it caused by coeliac disease? Did it also cause ataxia and that's why you were sent to see Prof Marios? When you say results are sent by post, what kind of results do you mean?
Hi Marz. Yeah, I've been reading up on it since Motherelle wrote to me and it's linked to dementia and Alzheimer's too. Apparently it is always a feature of Alzheimer's and is a marker for when dementia turns to Alzheimer's. Very cheering - not. Because I've been reading about neurological effects of gluten sensitivity, I'm amazed at the range of damage it does in the brain. Damage which doctors seem to be singularly unaware of. Even the Coeliac UK site is very much gut based. It does make you wonder how many poor souls are wandering around with brain and/or nerve damage who don't have a clue about what all those sandwiches are doing to them.
I'm still eating wheat just now, because I'm far from any answers from tests, or even getting the right bl**dy tests, but every time I do it I kind of cringe, thinking, 'Why the hell am I eating this when I already have brain damage?' I feel like I'm poking a stick in my head and twirling it around.
How were your anti-body results you were waiting for ? Interesting that alzheimers/dementia levels have risen over the last generation - in keeping with the hybridization of wheat and the changing diet....
Hi Marz, got my antibody results today and they are a wash-out. Another theory up the spout! They seem to be a perfectly healthy 3.5 (range 0 - 50). And all I feel is deflated. Now I don't have a clue what is going on. The only things I learned today are that, as usual, the thing I DIDN'T expect to be bad, was: my Vit D. At 25 it is just within "insufficient" by the skin of its teeth. I am mystified. I've been taking Vit D since I started B12 injections, so it's several months, and I've been taking double the dose. How in the name of all that's holy can I still be "insufficient"? How did I get insufficient in the first place? How low WAS I to start with?
The second bombshell was discovering there was a set of blood tests from 22nd Dec last year, that I ASSUME the doc has kept from me, showing I have Neutropenia. I knew my white blood cell count was dropping - it was me who pressed to be retested - but what gets me is he has been told by the labs to test me again in 3 weeks and he never did, or has. In fact, I had been going to tell him this coming visit we needed to test it again since I was last tested more than 4 months ago. I don't know how I feel about this. At all. I know he's dismissing it as Carbamazepine induced (I HOPE), and it may well be, but the point is that it's not the first time it's done this, well before I was on Carbamazepine, so it may not be drug-induced. Secondly, why didn't he restest me as instructed? At the very least we should be keeping an eye on it. I feel pi**ed off and it's stopping me thinking straight.
I see neutropenia can be an autoimmune problem, so we could have our villain right there, but after discovering I have no thyroid antibodies (literally almost none!) I don't know if I'm just flogging a dead horse. God damn doctors and God damn blood tests.
As you live in Scotland I am not surprised at your VitD levels. I do not know the dose you are taking but you should be taking at least 5,000 IU's daily. What did your Doc suggest ? Maybe loading doses to begin with to bring your levels UP.
If you divide your result by 2.5 - which brings it to 10ng/ml - then look at the website below for dosing according to your result.....
Am relieved that you do not have Hashimotos to add to your woes Am afraid I do not have knowledge of Neutropenia - so will have a read. Yes your Doc is negligent in not informing you to be tested again. Still that gives you more power in a funny sort of way !
Hah! Excellent, Marz. According to that chart I should be exposed to all those diseases, as I fall well below. Really useful dosage chart though, thanks for that.
I am embarrassed to admit I don't have a clue what dosage I am on. I shall go and get the bottle from the kitchen and sort that out post haste. I just doubled the recommended dose, which I thought was crazy-wild enough, but I was worried after the B12 deficiency. But it looks like my "crazy" overdosing has fallen far short. I can only assume my gut isn't working at all. Not that that's news to me. It hasn't been working for years, but quite what am I supposed to do about it?
I haven't seen the doc yet, so I don't know if he will bother to do anything about it. I thought I'd ask for the standard NHS treatment for it, being as how my supplementation hasn't worked. And cavalierly forgetting my neutropenia is not his only failing. The lab tests came back with them doing the wrong test for coeliac yet again. That's twice now. Unbelievable. I am at my wits end here. I literally have no idea how to get this done. I am considering asking for a consult with Prof Marios H... (I really cannot get to grips with his Greek surname) all the way down in Sheffield because I literally do not know where else to turn. I'm weighing up alternatives through cost, because they are all going to cost me a large chunk of change that I can ill-afford. I am also trying, very hard, not to get angry about this. Not that it's working very well.
My doctor thinks I should be satisfied because I have my diagnosis of TN. He actually said, "You will never know what caused this" to me, meaning I should back down and I was wasting my time. He also told me I would never find a cure and that my B12 wasn't really working, it was just a placebo, and as soon as I try to come off Carbamazepine my pain will come back. He's good like that, constructive and helpful.
The problem is though that the Carbamazepine is causing drug-induced illness, possibly both the thyroid dysfunction and the neutropenia. If the neutropenia continues, it will get to a more dangerous place, then what do I do? At the moment I have permanent ringworm, which is increasing exponentially; I can't rein it in. Likewise I have chronic toothache, probably from a tooth or gum infection. These are both low-grade infections that are almost certainly being caused by the neutropenia. But I also have other uncomfortable symptoms which can only get worse. There is nowhere else to go after Carbamazepine, so unless I get to the bottom of this my health is just going to go down the toilet.
I have tried explaining this to him, but he's not interested. He just thinks it's all some kind of crazed neurosis and I'd be happier if I just accepted my fate. Easy for him to say, since it's not his fate.
Ach, I don't even know why I am telling you all this. Just venting. I have to see the little s*"! on Monday and I have no idea what to say, or do. Guess I'm just trying to sort something out in my head. Forgive me. X
Hi Penel. Yes it does - it even says so on the lab report: "retest after 3 weeks" - four months, later I'm asking him. That said, there's a (very) good chance this is a drug-induced problem (Carbamazepine) and this is why he's not worried, but also a slight chance it isn't (I did have it in a blood test before I was on the drug). But either way it should be watched. I'll be more alert in future, because I seriously doubt he will.
Yep, Marz, I reckon the thyroid has been off for at least 15 - 20 years, but slipped though thyroid testing on the grounds it was NHS 'normal'. I didn't know in those days to always ask to check the results.
Still haven't decided what to do on Monday at the doc's. I'm thinking just going in and punching him off his seat might be the most rewarding. After all, it's not like he's contributing much (anything)...
Give him just one more chance and then tell him you will be self-medicating and would he monitor you - due to the fact that you have not found wellness under his care..... !!
Yeah, I've finally folded and am looking into private testing. It's a minefield though and there doesn't seem to be a dedicated lab or clinic here. I'm scared I'm going to pay out £200 and it will be the wrong bloody test. After all I haven't had much luck thus far!
I did look at Regenerus, thanks, but couldn't find the tests I was looking for. They do seem to favour packages ('arrays') and I seemed to be buying more than I needed.
But I've clamed down a bit now and I'm doing a rethink of this situation. I think I'm expecting the NHS to be fair and helpful and it's neither of those things, so I think I need to take some more responsibility for what I feel needs doing. I think I can live with that - just about! - but my real problem is in not having expert analysis, so not knowing if I'm doing the right thing.
Anyway, I'm seeing the holy father tomorrow - still don't know what I want to say to him or ask for; I'm just about to do my 'list' shortly. Looks like I'm going to be doing this by 'feel'. That should be fun....
Hope all goes well. Who are the experts anyway ? Surely you have gathered enough information from the various forums to become THE expert. As I keep saying - scientific stuff is skewed to favour the people financing the research - so pretty useless really !
Medicine of today is around 100 years old - going by how you feel is possibly thousands of years old - so go for it
Please read my profile and then you know that years of chronic and serious illness can be rectified. It is the edited version
Hi Marz, how odd you should say that about experts. I just got Malcolm Kendrick's Doctoring Data today, and flicking though it, I read a bit about experts where he says, by definition, they are really just people who all agree with the mainstream opinions. If they weren't, they wouldn't be perceived as experts, they'd be mavericks.
I'd never thought of that before.
My doc's visit went as expected. He says he can't refer me to Prof Marios in Sheffield, so I'm going to have to write to him myself and see if I can sell him on seeing me. If not, I'm just going to have to fork out for some testing, in the most effective order I can think of, and make my own mind up. I'm going to have to take a leaf out your book.
Tell me, do you eat sugar at all? If so, what type and how often?
P.S. Sorry, that sounds a bit peremptory! I'm just curious as to what role sugars, natural or otherwise, might play in this.
I found it all so interesting - sadly there were not enough Docs there. Some information I knew - but lots of new things. Too much to go into.... I found it sad that when Mums are pregnant and also B12 deficient it can cause serious problems for the off spring. Why not test them then....
Glad to be back in the sunshine dealing with Tax Bills to try and save the Greek Government and telling people we are fully booked until November ! Pool now 26 degrees ! Yippeee. Meeting another girl from the forum today for lunch - our third meeting in Crete !
Not as well attended as the Thyroid Conference - but yes there was a good turnout. Sadly not enough Docs for whom the Conference was initially created....Think there will be podcasts....
Yes in fact I have full blown Hypothyroidism now .I have been told I don't have Hashi anymore but not too sure if this is correct as no one will discuss it with me .I'm still under investigation ,they found borderline I G A Gladin antibodies but I hadn't been eating gluten .I have definite abnormalities in my brain ,still waiting for results from a second Spectroscopy MRI I had 6 weeks ago . I went gluten free again after the test as don't want to cause more damage to my brain if that is the cause .
Hi Motherelle. Is the Spectroscopy MRI the one that takes a closer look than a standard MRI? It measures every 0.3 millimetres instead of every 0.5 or something like that? I was told to ask for one of these when I went for my MRI, but when I tried my neurologist laughed at me and said, very patronisingly, "Our radiologists are very good and know what they are looking for". I wanted to say 'So good they have microscopic vision?' but I shut up. I kind of regret it now because I made an official complaint about her eventually anyway! (Patronisation was her big thing.) Doubly ironic when you consider the MRI never found anything anyway. Maybe they should have listened to me...
MR spectroscopy provides a measure of brain chemistry. The most common nuclei that are used are 1H (proton), 23Na (sodium), 31P (phosphorus). Proton spectroscopy is easier to perform and provides much higher signal-to-noise than either sodium or phosphorus. Proton MRS can be performed within 10-15 minutes and can be added on to conventional MR imaging protocols. It can be used to serially monitor biochemical changes in tumors, stroke, epilepsy, metabolic disorders, infections, and neurodegenerative diseases.� The MR spectra do not come labeled with diagnoses. They require interpretation and should always be correlated with the MR images before making a final diagnosis.
Of course mine was used to identify the atrophy and measure how much it had degenerated . I believe I also had the MRI that measures to the tiniest millimetre . It could be a very useful scan for you Chancery .
Thanks a lot for that, M. I've never heard of it, so very useful to know. Was it something you had to be injected with a dye for, or some such? I'm trying to get my head around how it works. Think I need to Wikipedia it!
No Chancery. No dye . I can't find the pictures that I found when I did research before my test . I will have another look tomorrow because it explained it perfectly . I do remember that areas of the brain were shown in colours ,different colour for different organic matter .
Why does your doctor say he cant refer you to see Prof Marios (we tend to call him that!)? you are entitled to be referred - many people from all over the country see him on the NHS. I would go back and say you want a referral to a neurologist and then be prepared to sit there and do the broken record technique - whatever he says you say I know but I really think it would be helpful to get a second opinion/see a neurologist, as they are under a lot of time pressure he will likely agree to doing a referral and you say under the Choose and Book scheme I choose to see Prof Marios Hadjivassiliou in Sheffield and Im prepared to get there at my own cost. Do it! Do it! Do it! Im sure Marios is the one who will help you. I will help you to find somewhere to stay etc that doesnt break the bank and with travel if that helps.
Thurgolady, that really is very kind of you - a very sweet and generous offer, thank you. Currently, I am waiting for the results of my THIRD attempt to get IgG testing for coeliac, so I will wait to see how that turns out, just on the wild chance that it turns in something positive or at least informative. Failing that, I will either have coeliac gene testing at my own expense, or write to Prof Marios and see if he will see me.
My doc said he couldn't refer me, 'that would have to be done much higher up'. I assume he means by a neurologist. I'm not keen on another neurology appointment because they've been a complete wash-out for me. I'm up against the problem that I have a recognised illness - trigeminal neuralgia - and they have medication for it; that's the end of treatment as far as they are concerned. Additionally, it has no known connection to gluten or coeliac disease, so I am sure my neurologist would pooh-pooh the very idea. I told him about the Vitamin B12 connection I had made at my last meeting with him and he had NO idea what I was talking about, and made it plain he didn't want to hear any more about it. So I feel it would just be an exercise in frustration to go through that, with nothing to show for it at the end.
I reckon it would cost me at least £300 to go see Prof Marios, and it will cost me that to have gene testing. Might just be faster to test my genes! If I am positive for the coeliac gene I will just give up gluten and not risk it. If I am negative, I think it highly unlikely gluten is my problem, so the testing feels like a win/ win to me. And no aggravation (or further delay) to see Prof Marios.
Anyway, I'll see if I get any luck with my latest testing. If not, I shall decide on where to go next. But I shall keep your kind offer on the back-burner, if I may. For all I know, gene testing may be £500+ and out the question and it will have to be Prof Marios!
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Am afraid I do not have knowledge of Neutropenia - so will have a read. Yes your Doc is negligent in not informing you to be tested again. Still that gives you more power in a funny sort of way !
Recommendations by a dietitian diagnosed with coeliac disease:
Is there a test?
Coeliac Gene - help needed?
Oh, I'm 'super sensitive' don't you know......gluten free labelling of a different type!
