Is it possible I've had coeliac all along?

Hi, this is a kind of long preamble but please bear with me while I give a little background - 10 months ago I was diagnosed with Trigeminal Neuralgia, a rare degenerative neurological condition. I discovered B12 deficiency quite by chance and fought my doctor, hard, to be tested for it and then treated, although my test results were considered to be normal, if in the 'grey zone'. Lo and behold, two months after treatment started, the B12 has indeed 'cured' the neuralgia, as in it is now relatively pain-free, although I am still on very strong anti-convulsant medication. But this medication was unable to make me pain-free during the whole ten months progress of the illness and yet a mere vitamin did.

With the B12 deficiency 'proven', it got me wondering why my body had developed the problem. I had long felt that my gastric issues of 15 years standing had to be connected. I had gallstones removed 2 years ago and yet my gastric problems have got worse. I now have chronic oesophagitis and constipation. I bloat so severely after meals it actually hurts to sit down and it often forces acid up into my mouth. The amount of foods I can eat seems to shrink every day. I also have other things that feel like autoimmune reactions, like chronic urticaria, chronically itchy skin, eyes and genitals. Dry, brittle ridged nails. Chronic insomnia, problems with anxiety and depression. It goes on and on. While they are all treated disparately by doctors they feel connected to me. Like a degeneration of sorts.

While preparing to see my doctor for my next B12 shots I was making notes for tests I wanted him to do - Coeliac being top of the list. When I looked up what I should ask for I read about IgA testing and it rang a bell. I dug out old blood tests and sure enough there was an IgA test – I assume from a previous time I had asked to be tested and when he'd told me the results were normal. What's more, it shows that I WAS deficient, at only 0.73 L when the range is 0.8 upwards. It has even been highlighted in bold to show it's low and yet my doctor has passed this as normal. It isn't normal, it's deficient, isn't it? It's below the norm, therefore deficient.

I've even discovered that this isn't the test he should have done, and that I quote, "Some people with Coeliac disease do not make the usual Coeliac disease antibodies. This is called IgA deficiency. When the laboratory is measuring your antibody level they should also check your total serum IgA to detect IgA deficiency. If you are IgA deficient your GP will need to test you differently for the condition.

NICE has issued national guidance on recognising Coeliac disease. They recommend that a different test for Coeliac disease (an IgG tTGA and/or IgG EMA test) is used if a person is confirmed as having IgA deficiency."

Am I wrong or should this have been picked up as a definite signal that I might be one of these people? This was two years ago and I feel really angry that I've been allowed to walk around like this and possibly develop Trigeminal Neuralgia, an incurable degenerative disease, just because a doctor didn't pick this up.

Can anyone tell me, am I barking up the wrong tree here or do I have cause for worry and/or complaint???

P.S. I should just add in the results for this that MAY be related (sorry, I'm very ignorant about what's relevant to coeliac disease):

IgA ... 0.73L

C-Reactive Prot .... <1

Anti-tTg IgA (DS2) .... 0.14 (the range for this one is given as 0.1 - 5.0, so this is just scraping in and no more too)

If anyone can tell me the significance of any of these results, I'd be immensely grateful

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53 Replies

  • Hi Chancery

    Sorry I cannot be very much help to you on the test result scores as I don’t think I know enough about these to give advice. I think that there will be more knowledgeable people on this forum who will know more about these, however you could give CUK a call. I have rung them a couple of times and they have given me advice on tests etc. and didn’t ask if I was a member. Their telephone number is on the website or you could email them, they should be able to tell you exactly what the results mean and then you know, if you do contact them via email it may be easier to take a copy to your GP.

    With regards to the other things you mentioned, I think I had CD for many years before diagnosis, I always had a good diet with plenty of meat and veg but went to the doctors a couple of times with small issues such as my nails being brittle ( they thought it was fungal nail infection) and my hair falling out, now I look back and think that it was the CD which was the cause, I also have the skin rash associated with CD and have had that for over 20 years, this was misdiagnosed as dermatitis and I just put up with it for years.

    What I wanted to say is that even if you don’t get a diagnosis it may be that you are still affected by gluten as my daughter is, she has aches and pains, headaches and many symptoms that in some ways are worse than my own yet has been tested by endoscope which has come back negative, she is gluten free now and feels better for it.

    Both I and my daughter are receiving Vit B12 injections, I get them every 3 months, my daughter is having hers every 3 weeks. We are the same as you where we were just over what is considered normal and my immunologist told me that I wasn’t deficient and if it had been left to him I wouldn’t have received the injections. Our GP listened to the neurological type symptoms we had and gave us the injections without any problem. We were both Vit D deficient as well and also I was deficient in zinc so I would get your vitamin and minerals checked as well.

    Hope this is helpful to you and you find out what is wrong and start to feel better soon

  • Hi tmoxon, thanks for replying to me. I didn't think of actually contacting the Coeliac society, although I knew of them, so thanks for the recommendation. Interesting that you had the same problems as me with brittle nails and the like. I never mention these things to doctors; they seem so trivial, but it does seem to come back and bite you in the a*se later in life when you need to back up your symptoms for a diagnosis.

    You are absolutely right, of course, that I can just treat myself if I can't get a positive diagnosis, but for me there is always a fear that I might be doing the wrong thing and leaving the real problem unresolved. It kind of has the potential to be disastrous! But I shall follow your advice and contact the coeliac society. Thanks again.

  • Hi there,

    Well you certainly have a lot going on so poor you.

    Firstly a reading of 0.73 in within 10% of .08 so is classed as within tolerance but will also be flagged up. So no I don't think that you should make a complaint. Also even though there is a link between Trigeminal-neuralgia and B12 deficiency syndrome, it is not listed as a possible link:

    So I do not think that it's in your best interests to make a complaint as your Dr was following procedure. And whether things should have been picked up 2 years ago is irrelevant now. Most of us spent 12+ years after complaining of symptoms of CD and actually being diagnosed and with hindsight...

    So I think that what you have to do is to focus on the next step and what's best for you and getting your self sorted.

    You also asked:

    Anti-tTg IgA (DS2) .... 0.14 (the range for this one is given as 0.1 - 5.0, so this is just scraping in

    And you have answered your question here, in that you are within the recommended range and what I would ask your GP is which's better a higher or lower reading so yours might be better than if it were higher.

    And again I think that you need to speak to your GP about what your results mean and ask him to tell you in layman's terms as it's all a bit complicated. And have a list of what you feel is relevant and don't be afraid to write down his reply for future reference.

    As for getting angry, again this is not in your best interest as it is only you who will suffer and even if anger seems a natural emotion it will only cause you stress and more suffering, so in my honest opinion you want to leave the past where it belongs, in the past and focus on getting yourself better.

    And good luck and I wish you well as you've a lot going on and I hope that you feel better soon.

  • Hi Jerry, thanks for getting back to me. I think my post was misjudged somewhat. I wrote it late at night and was excited at the possibility of the blood tests I had discovered; blame it on the powerful drugs I take! I wasn't really asking if people thought I should make a complaint; I really was more interested in people's opinions/experience of the IgA test which shows me as, albeit borderline, deficient. This means that I should have been tested differently, as this deficiency masks the results and renders the test that was done on me irrelevant. I was really seeking confirmation that this was true. Having done more research since last night I think it does seem to be the case.

    I have to say though, that when I get the correct tests done, if I was found to have coeliac disease I absolutely would complain. Hell, I'm considering suing! I think if more people sued there would be less poor souls going twelve years without a diagnosis! But I shall be sweet to him in the meantime; maybe I will be found negative for the disease and he will get a 'get out of jail free card'. Good news for him, but not for me...

  • Hi chancery,

    I have my first Immunologists appt next week and, like tmoxon's daughter, my endoscope also came back negative, and also like her daughter I have now took it upon myself to go GF (among other things) as I could see that certain foods were effecting me badly.

    I already have one autoimmune condition, hashimotos (thyroid illness), so am trying my hardest to calm my immune system down, through food, to reduce the risk of getting another one - which is three times more likely when you already have one.

    I am going to an immunologist to ask specifically for the tests you are talking about so any info you can share would be great, plus links to any good websites or articles you have read.

    As you are well aware, unless we educate ourselves, doctors, consultants and the likes are more than willing to fob us off (hence the 12 year diagnoses - which I find appalling) and I have found this to be true as far as my thyroid condition goes, so any info you could share with me would be great. I did not even know that a person could be IgA deficient so me thinks I need to do a lot of research before next weeks

    Wishing you well on your journey.

    Moggie x

  • Hi Moggie, thanks for getting in touch. Yes, indeedy, you can be IgA deficient. It's a genetic 'flaw' and it means you are missing an immunoglobin (IgA, unsurprisingly!). This basically means your gastric area, your respiratory area and your mouth - anywhere there is a mucous membrane - is vulnerable to infection. Here's Wikipedia on the fun (sorry, I don't know how to make that a live link!) :

    What this all seems to boil down to is you MIGHT get more gastric problems and respiratory problems than ordinary folks. Interestingly, there is a much higher incidence of IgA deficiency in people with coeliac disease than in said ordinary folks.

    You have to be tested differently for coeliac disease if you have IgA deficiency. Here is the NICE guidelines on the subject:

    "1.1.15 When clinicians request serology, laboratories should:

    •use IgA tissue transglutaminase (tTGA) as the first choice test

    •use IgA endomysial antibodies (EMA) testing if the result of the tTGA test is equivocal

    •check for IgA deficiency if the serology is negative[1]

    •use IgG tTGA and/or IgG EMA serological tests for people with confirmed IgA deficiency

    •communicate the results clearly in terms of values, interpretation and recommended action. "

    As you can see, that tells you which test you actually need, IF you are IgA deficient. They are VERY confusing, being chiefly a collection of letters! But I was most fascinated to hear you are going to an immunologist. Is this private or on the NHS? I didn't even know there were such things. Has your doctor referred you?

    Also, I'm curious, were your blood tests negative? I just wondered, since they sent you for a biopsy. I thought you didn't get those if you had negative test results - money-saving on the NHS and all that.

    P.S. Oh, I see the link has gone live as soon as I posted. You live and learn...

  • Hi Chancery,

    I 100% understand your anger and frustration because I kept being fobbed off with, I was some kid with hypertension and I was to healthy to have anything wrong with me so it must be stress. In my early 30's I started to pass blood and thought well this is it they will find out why. But boy was I wrong because this eminent specialist had tagged me as neurotic he told my Dr that he thought that I had added blood to a stool sample as a cry for help as I was getting divorced!!! 2 things were wrong with this diagnosis the first being he had not met my ex LOL and he had just dismissed me because of his first diagnosis. I said to my Dr humour me Dr what could be the cause of the bleeding and he said the only thing that it could be was microscopic colitis but then laughed and said but you don't have that, as you're too healthy. I had had an examination to rule out internal haemorrhoids. I was finally diagnosed with CD when I was 40. A year later I was diagnosed with microscopic colitis as well.

    I thought the the specialist that i had seen was an arrogant winker excuse spelling! But I also realised for my own sanity that i had to let time run it's course and in the fullness of time all would be revealed.

    I was actually diagnosed after going to give blood and being referred to my Dr. I had moved house so was not registered with a Dr so I registered at my local surgery saw a Dr that had never seen me before and she referred me to another gastro and they knew straight away and booked me in for a biopsy and after this everything changed for me, as suddenly I had a diagnosis (a medical label) and I was in the system but because of years of still ingesting gluten I also have osteopenia and I had had the worry of what was lurking deep within me.

    So when I advise others to rise above it, I speak from my personal experience and it worked for me, so again good luck and it looks like they are on your case.

    Thats my 2p's worth.

  • Hi Jerry, you have had a merry old journey, haven't you? I admire your zen attitude to all of that. Me, I'd have been at the medical lawyers, seeing if I had a case for a malpractice suit!

    Ah, I'm only kidding. I know from bitter experience that ill-health exhausts you, especially if you don't know what's going on. By the time you DO find out you have no energy left for the fight - you just want to get away from doctors as far and as fast as you can. But I do have to say I reckon you could have nailed that b*stard who accused you of rigging your own specimens. That one definitely needed taking down a peg or two. If a good lawsuit wasn't forthcoming then at least a punch to the side of the head. Ah, we can dream...

    I'm ashamed to admit I don't know what osteopenia is. I shall now go and look it up. But I do think you are being overgenerous imagining the medical profession is on my case. I more or less had to physically fight my doctor to treat me with B12, despite it being only a vitamin, (I had to compile a huge dossier to back my case and present it to him - no kidding), then I had to fight him again to get my injection rate increased (that one bordered on shouting), and last of all I had to put a formal complaint in about my neurologist to get a new one. I had to fight hard for every bit of progress I made. If I'd left it to them I'd still be sat in a stupor of medication, suffering pain and dying of depression and futility at my diagnosis. The degenerative diagnosis hasn't gone away, of course, but at least I now have hope. And they sure as hell didn't give me that.

    Nope, come to think of it I think I am more aggressive than you! I base it on two hospital stays where I learned by observation that the patients who complained the most got the best treatment (a much-studied fact that I can attest to), but it isn't easy. Believe it or not, I hate confrontation and will move mountains to avoid it, but sometimes needs must. On the other hand, you will probably live longer than me! Of course, only if osteopenia or the medical profession doesn't get to you first...

  • Hi Chancery,

    Zen and the art of being a coeliac, I like that so you've got me sussed.

    Before I was diagnosed I felt very angry due to the frustration of medic's failure to diagnose me but I had 2 barium meals which were inconclusive so revealed nothing so they made assumptions based on my physical appearance. The GP who told me that i had probably added the blood left shortly after this under a dark cloud. Also the symptoms of CD are very similar to stress and ingesting gluten creates stress so we are in a catch 22 situation.

    When I went to another practice the young female Dr apologised to me and said that I had obviously slipped through the net and i said please don't apologise to me as you are 100% on my case. I was referred to a gastro as an emergency and within 2 months i had been diagnosed and was on a gluten free diet. If I'm honest I felt relief and I started to feel better really quickly, my son had chosen to live with me after the divorce so with a full time job I had better things to do than have bitter recriminations. When I had a biopsy there were 2 ladies who also had biopsies and we all had similar symptoms and were thin. And they were sent home as their villi was OK and even though I wished that I could eat anything I also realised that I was the lucky one.

    Osteopenia is thinning of the bones and mine is only marginal and has stayed that way since diagnosis, I had a really bad bike crash and i told my gastro that I was surprised that I hadn't broken any bones so I had another Dexa bone scan and it was identical to 12 years earlier. Many people go on to develop osteoporosis which's brittle bones so again I count my blessings.

    Now here's what you have to realise I have my medical status sorted and I respond to my dietary regime so I do not take med's and I feel great.

    Whereas you are still on the road to diagnosis and I think that it is very important that you can have a rant and get things of your chest and GFG is a forum where you will not be criticised for venting your feelings and it is good for you to be able to do this as it can help you to keep things in perspective.

    I'm sorry this is a bit long winded and it is only meant to help so I will finish with a post I wrote on here a few years ago about feeling 'why me it's unfair' and I think that it applies to many illnesses, predicaments just knowing that 'we' have shared emotions, can really help:

    I focus on what I have and what I can do rather than dwelling on what if's and if only.

    And I wish you well,


  • HI there, Jerry. I know exactly what you mean about feeling lucky at being diagnosed coeliac. Believe it or not I am absolutely praying to get a positive test result to the new tests I'm hoping my doc will do. Coeliac disease has a 'cure', in that you drop gluten, you get better. For me, locked into strong anti-convulsants that effectively make me a different person, but that still don't actually improve my condition, and may some day stop working entirely, coeliac looks like a walk in the park! It's manageable, and I would cheerfully never eat another cake or slice of toast if I stood a chance of stopping the deterioration in my brain. I would actually settle for that, if that was all I could hope for, although, of course, I really want a cure that can reverse the damage done to my nervous system so that I don't need the medication, or at least not as much medication. But frankly even a reason for why this random act struck me would be something. I hate not knowing or understanding what's happening to me.

    I did look up osteopenia last night (thank you for increasing my wisdom!) and read that it is, effectively, early warning for osteoporosis, so I am really glad to hear that you seem to have halted its progress, to all intents and purposes. Maybe you will even get a little reversal - you never know your luck.

    Thanks also for the link to your article - very interesting, and I know exactly what you mean. I experienced that first-hand with the first serious illness I had - gallstones. They landed me in hospital and I had to face an operation. I'd never been in hospital in my life (well, once, when I was about 7 and dropped paving stones on my foot - don't ask) and I took VERY badly to it. I was very panicked and more or less sold my soul to Satan praying to get out of it. I REALLY did not want to lose a body organ. In the end, of course, I did, despite a year and a half of very dedicated work by me, trying to heal myself. But I went through all the 'bereavement' style bargaining stages, including some - not a lot, I admit - why me-ism. But maybe because of that I didn't do it with this new disease. I raged against it, but not in that 'why me?' way. Actually, the opposite was true. I became more convinced than ever that it was connected to my gallstones, even although you couldn't get two more disparate things than brain 'decay' and gallstones! And yet, bizarrely, here I am, about - POSSIBLY - to be vindicated. I am at least vindicated that there is a definite connection between my Trigeminal Neuralgia and B12 deficiency, so I'm at least onto something!

    No, I think I just have to accept that I'm not a zen person, and fighting my corner is what I do. Hey, it's taken me this long in life not to fight everybody else's corner too; this is the improved version of me. Who knows, if we live long enough you and I will almost certainly meet in the middle one day and be not very different at all!

  • Hi there, this is actually very interesting so here's a couple of links one is about a believed link with B12 deficiency and Trigeminal neuralgia:

    This is much more straightforward:

    And this link asks is there a link between Gall bladder and undiagnosed CD:

    Now going back to our attitude and how we perceive ourselves you are in a position where you feel that you have to fight your corner and are doing a good job and I admire you for that.

    I had inflamed kidneys for about 15 months and my lady friend said to me you don't give in to things do you and i replied that when the going was tough I was a survivor but when the going was good I was a winner. So having gone through many things I see being assertive as bang on and I see being over assertive as aggression and I see not being assertive enough as passive aggression. So it is keeping that fine balance regardless of other peoples attitudes, actions or prejudices and not taking their crap on board as it is their words and their actions and them who have a problem.

    We have many members on GFG who have said that their Dr makes them feel neurotic and my response to this is that they need to adopt an attitude of 'I'm a coeliac and I'm alright' regardless of ongoing health issues which grind us down.

    So you fight your corner and I hope that they get things sorted for you really soon.


  • Hi Jerry, you are absolutely right - there is a scale and it's finding the happy place on it. I've gone up and down it in life - although never going to the aggressive end, as in the kind of person who goes in and screams willy-nilly at everyone in their immediate surroundings. You know the type, the person in the queue moaning at the check-out girl when it is patently a problem with how the shop is run and nothing to do with her at all; the useless complainer who doesn't direct their complaint at the right person. But you're also right that it's a fine line between fighting your corner and giving yourself grief, as opposed to them!

    I always say you have to pick your battles, but it's taken me a while, not so much to DO it, because I always have, but to let go of my anger and resentment at the injustice when I have to pass up on a fight. That one hurts! But hey, I'm getting there.

    You would have enjoyed my neurologist's visit today. It was special. It was like talking to a brick wall of entrenched beliefs. I don't think he'd had an original thought since he left medical school. After I left I had to have a good old rant about him, then I got depressed (still am, if truth be told) but you've really got to watch not to go down that road. I think that's what I'm talking about when I say fighting your corner. You have to be stubborn and insistent and persevere, plus realise that there's no point in persevering with the wrong people - like that neurologist. I won't be back there.

    Thanks for the great collection of links. I know the first one for TN - in fact, I used it for my doc's dossier! But although I am a member of that TN forum I had never seen that second discussion before, so many thanks for that. It amazes me how much obvious connection there is between the disease and B12, yet no-one takes it seriously. It's a bloody tragedy.

    But the special one is that gallstone one - thanks a million for that. I'm going to read it two or three times. I have long struggled with the illogicality of my gallstones and I think this might help put some more pieces together for me, I really am grateful.

    I have to go cap in hand to my doc next week and ask for some more tests; I think this piece is really going to help me produce a coherent argument for my gastric problems, TN and autoimmune conditions all being linked. You're a gem!

  • p.s. I don't know if you know that there is a gut summit on at the moment and, having listened to many similar, I find them full of very useful and interesting information so thought I would link you to it.

    Moggie x

  • Hi again, Moggie, that is a fascinating looking link. Many thanks for that. When I get two seconds (medical appointments coming up; I prepare like I'm going into battle!) I will have a good old watch; see what I can learn. All grist to the mill...

  • Don't wait to long as each day's speakers are only available for 24hrs and then they disappear.

    I know what you mean about homework and medical appts, I am researching every spare minute at the moment for me appt next Wednesday as I want to go in with a list of precise tests I want done. Came across a really interesting site yesterday, which gave me a few good ideas - link below.

    Will answer your first answer in this answer if that's o.k. (did you make sense of

    I have had two whole years of hosp appt, due to heart palps (thyroid meds) and cysts of the ovaries. This lead to heart scans, adrenal testing, bone scans, gynae appts, endocrinologist appts (thyroid specialist - well that's what they are supposed to be), appt with my anesthetist, who wouldn't put me under until my heart and thyroid meds were both stable, and gastro appts as both my iron and vitd where in my boots. The gastro then ordered camera's up/down both ends (sorry) due to my low vitamins and the fact that my dad died of bowel cancer. I have had to fight, and refuse, bad medication choices - like beta blockers for my heart palps when I knew it was the thyroid meds causing them and told both my GP and endo that they were not going to put a sticking plaster over the and acid blockers that my gastro wanted to put me on - even though thyroid patients are known for low stomach acid, not high.

    Finally had the op last Jan and am doing well but I have had to research and fight all the way to get to where I am now.

    Through all my research, and with the help of a very good friend, I realised I have a leaky gut (intestinal permeability), which is making me react to almost all foods. At the moment I am gluten, egg, sugar, dairy and all processed foods free. I have also been a veggie for over 30 years so, as you can see, my diet is very restricted and I have lost 3 stone in the last 6-9 months. I went back to me GP, who has now come to realise that I know what I am doing and can trust me, and requested an appt with an immunologist for specialist testing telling her "I don't have a thyroid problem I have an immune problem and I need specialist help to calm my immune system down because if I don't I'll be back here in a few years time with diabetes, lupus or one of the many other autoimmune conditions I am likely to get". She then, very reluctantly agreed to refer me. I also know for definite that I have sever candida, which causes leaky gut (this can also lead to full blown coeliac), and want testing for this, food allergy testing and the test you have mentioned so I can see exactly what state my gut lining is in.

    So here I am, researching and preparing for yet another appt, I am going to fight hard for what I want but if I don't get it then I will save and pay private for the tests, but my biggest problem is solving the candida problem - which I feel is the root cause of everything.

    Sorry for the long reply but felt I needed to explain how I ended up seeking help from an immunologist as I have come up against consultants and my GP time and time again in the last two years who just don't get the gut/thyroid/autoimmune connection and if anyone should be able to understand where I am coming from it's a specialist who deals with the immune system (well that's the thinking behind it but I may be badly disappointed), and if he/she doesn't get it then I will carry on trying to fix things myself.

    It's a crying shame that people have to fight long and hard for the right treatment, and I feel sorry for those that are to ill to fight, but fight I will.

    Moggie x

  • Well Moggie, I have bottomless admiration for you, managing to land yourself an appointment with an immunologist. I should imagine that's the equivalent of getting to the holy grail in the NHS! I didn't even know they had such a beast; however, I am thrilled to hear they do because I might be able to collar one too, because that's what I feel sure I am looking at with my condition. I am positive, looking back through my sorry life, that this whole collection of sh*t is an autoimmune problem and it's escalating as time goes by. Something, somewhere has been missed - if only I knew what the damn thing was.

    I'm absolutely sure you are going to sympathise with this, but don't you find trying to untangle potential autoimmune conditions like wading through treacle? At the moment I feel like a character in a fairytale who is at the crossroads in the woods - do I go down here and face the seven-headed dragon or do I do I go here and face the five headed snake? I honestly don't have a clue. It sounds really bizarre, but I wish I could get a positive result for Coeliac or thyroid or SOMETHING just so I could be sure and follow a path. Even my B12 deficiency wasn't really deficient - hence my fight to get treatment. I had a reading of 383 and in the UK it's 200 (I think) that's considered low. I had to point out that experts in the field think the 200 rating is far too low (they recommend 400-500) and that I was in the grey zone, but even then I had to compile an ACTUAL dossier of research to give to my doctor before he'd even consider the idea. And that wasn't the end of the fighting.

    I just know that if I can get retested for coeliac and it's negative again I will have to fight for a biopsy, and God help me if my thyroid tests are borderline. I never even know if I'm doing the right thing myself. The trouble with my condition - trigeminal neuralgia - is that it is very rare and they know zero about it. That's not an exaggeration. No research, no treatment - they just give you drugs to manage the (severe) pain and leave you to sit and die - quite literally. It's degenerative and follows a path of more and more powerful attacks, less effective drugs having to be increased and increased until they stop working entirely. Then they start operating on you. This involves killing the nerves in your face - no kidding. Unsurprisingly this often means paralysis or, paradoxiacally, it sometimes makes the condition WORSE.

    The best thing is an MVD operation. This literally means they put a Teflon plate between the nerve in your head and the blood vessel resting on it and this, hopefully, if it works, stops the pain... for 4 years. Or maybe five or ten, but seldom any more. And then you have to do it again, and again. Four times, maybe, and then you can't have any more. End of the line. You can see why it's nicknamed "the suicide disease". And you can see why I have difficulty reining in my avenging angel when doctors screw it up! I can tolerate their abject indifference; I can't stand negligent errors.

    But, to get back to the point in hand, your dad died of bowel cancer? - mine too. My dad was old, of course, but a colostomy bag is not the route I want to go. On the other side of the family I have Alzheimer's so it's not a great choice. I think the genetic dice has been loaded against me, that's why this is so important to me. I feel I've firmly established a link between B12 and my neuralgia and because of that it has to be a malabsorption problem. Fifteen years of severe gastric problems seems a logical place to start so I'm going back to coeliac disease. Like I say, if I find out I do have it I will sue any asses I can!

    I agree absolutely with your "sticking plaster" metaphor and I applaud you for actually saying that to one of them. I'd never have the nerve. I always try to be as conciliatory as possible, while being annoyingly stubborn! Right now I'm planning on blaming the labs for the IgA oversight so that I can get the doc on my side. Oh, the lying we have to do to get what we want. Really I want to go in and scream at him, but needs must. I will smile sweetly.

    I am going to see a new neurologist tomorrow and I am going to drop the autoimmune bomb on him. It will either be tragically funny or just tragic. You will note I have little faith on him rising to the occasion. I had to formally complain about my first neurologist and I've got this one instead. I have so little belief that he will be any better. But my money is on him saying, 'If you think it might be a gut problem you need to see a gastroenterologist' The NHS just cannot do integrative medicine. There is no holistic in their approach at all. My doctor actually said to me when I first developed neuralgia that I would have to see my dentist about some question I asked him because, I quote, "My knowledge stops at the jaw. I know nothing about teeth." He didn't even know what a root canal was. Dear God, are teeth not part of the body? What bloody use is that? And he's a good doctor - relatively speaking.

    Anyway, talking about integrative medicine, I wanted to ask you if you've seen this book:

    I've got the sample on Kindle and it looks really interesting from what I've read. I've been to look at the author's website and while I don't approve of all the (expensive) supplements she sells, and it does make me lose a little faith in her as a good physician, I do at least really admire that she's integrative. I really wish we had people like her in the UK.

    Right, my apologies too for going on so long. Loads more I'd like to ask you but I really MUST go and prepare for my assault on the neurologist. See if I can get SOMETHING good out of the experience. X

  • Have you looked the Autoimmune Protocol by Sarah Ballantyne? There might possibly be something in there to help you.

  • Hi Penel, thanks for the recommendation but I can't find it! I can find Paleo books by her and something called The Wahls Protocol by another author, but no Autoimmune Protocol. Is something maybe wrong with the title or a spelling? Sometimes a single letter out and you can't find the damn thing!

  • Hopefully this is it.

  • That looks like it, Penel. Thanks a bunch!

  • Good link and well worth the read - thanks.

    Moggie x

  • Paleomom has this useful article on leaky gut (in case you haven't come across it before)

  • Thanks for that.

    Moggie x

  • Thanks, Penel, I'm going to check it out - can never have too much info!

  • Damn it, I missed the damn things! I am unbelievably annoyed. Just went over there this evening to find they've closed up shop on me and now they all cost a fortune to download. A fitting end to a crappy week.

  • My local NHS trust have stopped doing the test for IgA deficiency!! I think that its morally wrong to tell someone they don't have CD if they haven't done that test My GP is trying to find another way round diagnosis by doing an autoimmune panel etc.

  • THAT is outrageous, Winegum. And it surely CANNOT be right? Have you queried it, because it's absolutely essential for people like myself who are falling below par with IgA. In the NICE guidelines it says (at least I think that's where I read it!) that it should be done with the actual coeliac test for exactly this reason - in case someone is deficient and therefore gets a false negative. It's supposed to highlight the need for the other tests, but you COULD just ask to have the two other tests done right from the outset and thus sidestep it as a problem. Maybe that's what your trust has done - adopted the other tests as standard. In which case you will be fine, if somewhat ignorant about your own status!

  • The NHS has also stopped the most important thyroid test that you can have done - it's called a T3 test and is the most accurate test there is as far as thyroid function goes - even when a GP asks for it they don't do it. I think things like this are only going to get worse the more they struggle for money.

    Moggie x

  • Yes, I just had to pay to have that done Moggie. My local trust won't do T4 either, in fact the computer system won't let Drs order it unless your TSH is over range! However, my FT4 is mid range and my FT3 is at the bottom of the range which tells a much clearer story than if I'd just had my T4 done.

  • Couldn't agree more - out of interest can I ask how much you paid? My GP has quoted me £33 for a full panel of thyroid tests, which is a lot cheaper than a lot of internet sites. I just cannot believe that they think doing a standard TSH test is good enough - which, lets have it right, is pretty useless on its own. My GP is quite good and does try for me and it will be interesting to see what tests I can get off the immunologist on Wednesday. My GP tried, and failed miserably, to get me another TPO test done as I want to know, now I have had a radical change of diet, if that had lowered at all.

    Makes you wonder if they actually want you to stay ill doesn't it - if they are not doing the correct tests how can they accurately assess your condition????

    Moggie x

  • £33 is a great price, wish I'd thought to ask my GP, I've been seeing him for nearly 6 months so my patience is waning! I paid £102 from Blue Horizon. I'm sure its all about Money. TSH is cheaper than the other tests. Also the private tests get sent to the same lab anyway, so the NHS are quids in. Me? Cynical? Although with the amount of other tests I've had as a result it has probably cost them much more anyway. The Doctor's have their hands tied a lot of the time. Its down to who holds the lab purse strings.

  • Sorry I misunderstood you didn't I - I thought you had had them done privately through your GP. Not many people know you can do this and its a shame because, as you have seen by what my GP has quoted me, its a hell of a lot cheaper than the likes of Blue Horizon, plus if the are involved with the tests then they are more likely to act on the results - well that my theory anyway - as some GP's will totally dismiss private testing.

    Moggie x

  • Eek! You guys are paying for blood tests??? Is this because your doc is refusing them, or do you have to pay in England no matter what? I'm in Scotland and we get free health care throughout. Thank God, because I literally couldn't afford to pay for blood tests. My Trigeminal Neuralgia means I can't work so we live on a very low income. I don't know how you cope.

  • No I don't pay for blood testing but sometimes, when you are in front of a doctor who will not listen, let alone do blood tests that you are requesting, then the only option is to go private - or ask your GP for private testing. I was asking for my vitd to be tested for over 18 months and was refused every time, it was only when I asked her how much a private one would cost she then relented and tested me, only to find that I had hardly any vitd in my body. At least she sounded quite shame faces when she phoned me to tell me that the hosp was sending me mega 50,000iu tablets to take.

    Sometimes doctors just will not test what you are asking them to test so you either keep on fighting to get what you want (and what god knows how long), or you take the private testing course, if I had the money I wouldn't be going to the immunologist on Wednesday but would go private.

  • Sorry that should have read (for god knows how long) - my finger got in a bit of a

    Moggie x

  • Well my heart goes out to you, Moggie, having the added anxiety of paying for tests, but yet again I am in awe of your chutzpah. To ask a doctor who has just refused you a test how much it would be privately is classy. While I'm glad she folded, I don't know how you could resist storming down there when your hard-won test results proved to be positive for low Vit D. I think I would have egged her.......

  • To tell you the truth Chancery my way of thinking is that what little energy I have is better spent finding ways to heal myself and not going to war with my GP. Since the vitd episode she now tests whatever I want (within reason) and will listen to me properly, so much so that I can now go in there and name my tests, as long as she can see the logic in them.

    You can get as angry as you want but it wont change things, so you need to find other ways to let them know that you are not going to be messed around, and gaining knowledge is the best way I know. Doctors can't argue with you if you know what you are talking about - they can try and dismiss your ideas, but as long as you hold fast they will usually be more respectful and more open to listening to you.

    Moggie x

  • Just catching up with this thread. Quite horrified at the rationing of these blood tests. I have just had T3, T4 and VitD tests done so I think the decisions not to test in other areas may have been made by local CCGs who hold the purse strings. It is my understanding that the CCGs commission services in England and control what tests are undertaken.

  • I know, Urbangirl, it's positively Orwellian. The rich can buy their healthcare and the 'poor' can't even get a bog standard test. It was ever thus...

  • If these thyroid tests are being denied to people I wonder if the people at Thyroid UK know about it? It seems so dodgy.

  • They know alright, just like they know that you can no longer get T3 from the NHS as they have shut down all avenues are far as this drug is concerned which, although it didn't work for me, does work for many so they are now left with the only option they have, which is to buy it from abroad and in most cases that then leaves them with no medical supervision. Thyroid issues and the NHS are still in the dark ages and there is no sign of this changing anytime soon.

    Moggie x

  • This is dreadful. I had no idea there were such problems in testing and access to medication. I don't understand this as testing is surely essential as is the medication?

    I am have just had T3 and T4 tests which were within range. This is the first time I have had T3 and T4 tests - have had TSH done before. I have some symptoms that GP wants to investigate and having antibody tests now. I feel really lucky. There is clearly some postcode differences in access. Do you know what Thyroid UK are doing about this?

  • What can they do apart from re-direct people to private blood testing firms, although it is much cheaper and easier to have them done privately through your GP, as GP's will often ignore the results from the likes of Blue Horizon but cant easily ignore results from their own labs. I have been lucky in as much as, apart from not re-testing my TPO (thyroid antibodies), I have had every test under the sun, from a full thyroid panel to adrenals and beyond, but they were done by my endocrinologist. The only reason I am going to see an immunologist is for blood testing as my GP looked at me like I was totally mad when I mentioned the tests I want, which are quite advanced immune testing.

    It might be an idea to get your iron and ferritin levels checked when you next have bloods done, if you haven't already, as if your vitd is low you are more likely to have low iron as well.

    Moggie x

  • Thanks Moggie I have had these tests and they are all within range. So the antibodies are the next step. I seem to be going backwards in some ways and gathering up a collection of symptoms and no medical evidence to confirm a diagnosis.

    But with regard to what can be done I guess others will be more aware of this aspect than myself as I have only just come on board and can only really comment on the need for testing. I hope that there has been publicity and the health watchdogs are on the case along with politicians.

  • Hi Moggie, FINALLY able to access these posts - hoorah! Can I just ask, what is a full thyroid panel? What should I be asking for at the docs in the way of thyroid blood tests?

  • A full thyroid panel is:-




    Total T4

    Total T3

    Reverse T3

    TPO - thyroid antibodies to ascertain if you have the autoimmune version of thyroid illness which is called Hashimotos.

    Again I hit the same snag with my GP over the reverse T3 as she said she didn't know of any lab that still tested for this but it is a very important test to have. You should also be asking for vitd, iron, ferritin and B12. It is no good your ferritin (iron the body has in storage) being just "in range" as it needs to be over 80 to stop hair loss and to covert T4 into T3 (which is the actual hormone that your body needs to stop symptoms). T4, or the equivalent in tablet form is an inactive hormone and your body has to covert it into T3 so if you are low in any of the above your body will struggle with this.

    Reverse T3 is very complicated but it goes something like this. With every levothyroxine tablet you take (or the natural form made by your thyroid) your body will covert as much T4 as its needs into T3, the rest will be converted into reverse T3 but the trouble with this is that the RT3 can block the receptor site that the actual T3 needs to bind too to stop your symptoms, so high RT3 is not good as the T3 your body badly needs will just be floating about in your blood and be unable to do it job if all your receptor sites are bunged up with RT3. Now you can see why a RT3 test is important.

    Hope that helps.

    Moggie x

  • Hi Moggie, that was a great reply, thanks! I was dreading having to trawl through the thyroid forum, trying to find all the info I needed - you just saved me a whole heap of bother.

    I've cut and pasted that and I'm just going to take it to the doc's with me. You're shortly going to be referenced in a surgery setting. Fame at last!

  • Your welcome - anything you want to know thyroid wise just shout.

    Moggie x

  • I agree with you Urbangirl. A lot of the times my GP will request the test only for the lab to refuse, so the decision not to test T3 or even a second TPO test - which I had refused a couple of months ago even though my GP had made is very plain that she wanted it tested - are definitely coming from higher up the chain. I should imagine that this frustrates GP's just as much as the patients.

    Moggie x

  • No, I just had the standard test done. When I raised the question of IgA deficiency with my GP, he said 'The lab don't do that test any more, which is quite annoying!' I know people locally who have had a neg BT to then have a pos endoscopy biopsy. They are lucky that their GPs had the foresight to take it further!

  • Ooooh, I'd really have to query that with another doc, or somebody. It just seems so bloody unlikely. Have you thought of seeing another doc at the practice and asking them, you know, casual-like? I'm trying to think of a way you could do that without stepping on toes. I don't know if you know your lab and could ask them directly. The NHS keeps these things so secret. Perhaps someone like NHS 24 could tell you. Or even try putting it up as a question on the forum here?

    Endoscope biopsies are so invasive. I'd really want the tests before going through that!

  • Hi

    Sorry to hear that you have felt so unwell many of your symptoms are similar to my experiences I was diagnosed with coeliac by accident as I was not absorbing medication for throyoid. For years I had suffered when I met with the dietitian she discovered a number of other disorders and felt that I had Ben coeliac for a while as the condition had caused my spleen to shrink and my appendices to disappear.

    Since being Gf I feel much better, doctors often refuse test plus the blood test are offten inaccurate try Gf and see how you go .good luck and positives thinking 😄

  • Thanks, Suran. That's certainly what I intend to do if the test turns up negative again. And this time I'm trying gluten free, not just wheat free (I have tried wheat free before). Might as well do the damn thing properly!

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