Hi, I've just posted this in the Pernicious Anaemia forum, but I'm posting it here too for any undiagnosed coeliac sufferers. Particularly if you don't have the typical symptoms, or you are struggling to be taken seriously by a doctor. At least it might let some of you know you are not alone!
I am currently being treated with B12 injections for Trigeminal Neuralgia. These have worked exceptionally well, in that they 'cured' my pain to the position that I am now lowering my strong side-effect-laden drugs. So far so good. However, I've been following the B12 connection to try and find out where my 'deficiency' might have come from. Because I've suffered from gastrointestinal problems for a long time I am looking into coeliac disease and thyroid problems, both associated with Vitamin B12 deficiency, and both likely culprits with the symptoms I have had.
So.... I asked my doctor if I could retest for coeliac disease - it was tested in 2013 and found negative. My reasoning for this was because I discovered I have sub-par IgA. Not enough to be a deficiency as far as the NHS is concerned, but low enough to be highlighted as low on my blood tests. This is significant because an IgA deficiency can cause a false negative for coeliac disease in blood tests.
You'd think this was all fairly straightforward, but no, my doctor isn't happy about retesting. He's spoken to a biochemist who assures him that my 0.73 IgA is normal enough (it should be 0.8) and it's only a deficiency if it is under 0.2. Yes, it's that great old chestnut - let's treat by the test results and the hell with the patient.
So we have a big argument, making me burst into tears and totally humiliate myself and making him cross because his surgery is now running late.
At the end of the day he DID agree to do the alternative IgG test, which is necessary for IgA deficiency but only after making it very, VERY plain that he doesn't approve and thinks I am "harming myself" by going on this "wild goose chase". That's why I broke down eventually. As soon as I even touch on explaining the psychological effects of my condition and the sheer misery it causes, having an incurable condition which is guaranteed to degenerate with time and no recourse other than drugs then brain surgery, I just fall apart. I swear I would sell my first born - if I had one - to be able to talk about the depression and grief my condition causes me without getting teary. I hate this 'weakness' with a passion. I don't want to be seen as the neurotic, weepy woman with crazy health ideas.
Anyway, I came out of there so humiliated I keep alternating between rage at being put into this position over something so trivial (I actually offered to pay for the test myself, but it still didn't stop the hullabaloo) and a defeat so overwhelming I just want to kill myself. I am trying to get to the bottom of my condition but if I have to fight my doctor for every single test or experimental treatment then I will break under the sheer strain of it. I just don't have that stamina. I am experimenting on me. I'm the guinea pig here, and I am hurting no-one but myself. I could see all this palaver if I was asking for crack cocaine, but all I want is a coeliac test. Seriously. See what I mean? Back at outrage again.
Anyway, rant over. I just had to share all this pointless sh*t with someone who has been there. I swear to God, as if this illness isn't bad enough, this constant battling is bloody killing me.
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Chancery
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Hi, I am gluten intolerant and could not care less about what any GP would decide about that, gluten intolerance is real.....dailymail.co.uk/health/arti...
I did not need a Coeliac test result to convince me to stop eating it, the same with the rubbish TSH test for Thyroid... and yes I also supplement with a B12 spray.. and probiotics. Doctors are not great with this sort of stuff unfortunately. MaryF
Hi Mary, yeah, couldn't agree more that doctors are not great with it. Right now there isn't a pit deep enough to drop the whole profession in, as far as I am concerned. But yes, I intend to go wheat free, at least, if I am found negative for coeliac disease. But as you know, you more or less have to stuff yourself with the stuff before you are tested - at least it feels that way to me. I've gained 3lbs in less than two weeks just trying to take in enough wheat for this damn test and it drives my appetite crazy. So if I don't have the disease - and I probably won't because that's God's sense of humour after putting me through that humiliation - I will at least be able to drop the wheat and get sane again!
To add fuel to your argument, B12 deficiency was the trigger to my coeliac diagnosis ( also low folic acid). So hang on in there and persevere.
Your GP appears to be an insensitive prat! Change he/ she or change surgeries?
Despite the subject matter I enjoyed reading your post. So my only other non medical comment is collate your experiences and consider how best to communicate them. Either to the NHS to influence policy or maybe even use the evident skill of writing to branch out and write the 'book' everyone has in them!!!
Hi Silver Dream, so B12 alerted you to a coeliac possibility? Did you find low B12 in a blood test and ask for a coeliac test, or did the doctor get it done? And can I ask what your B12 figure was (if you remember)?
As for leaving the doctor - oh hell, yes. Believe me, I wanted to walk out so often during our ding-dong battle. I think I must have bit back replies twice as often as I spoke and I was gabbling like a mad thing! I was THIS close to just saying "Oh f**k it" and walking out. I'm still not sure if staying was the right thing to do, since I now feel so bad about myself. Still, it's done now.
No, I'd leave the doctor if I felt sure of getting something better, but the two neurologists I saw were far worse. At least this doc gave me B12, and he does argue the case rather than not listen at all. But I fear, for me, that I've poisoned the relationship now, and I'm not sure how much more help he will give me. Well, just have to wait and see...
Hi again C, my old GP was one of the best. I had yearly MOT's and it was one of these, via routine bloods, that triggered his concern. No I do not remember levels, sorry😔, but strangely I still need B12 japs every three months despite a strict GF diet.
Given you've made some headway with him/her perhaps appeal to their emotional side and massage their ego a bit by writing a personal note of apology? I know it goes against the grain, but you need this person on your side and who knows they might also be wrestling with their conscience regarding the 'encounter' with the crazy, emotional, angry, but maybe ill person they have just tried to help.
If it was me I'd apologise for my emotional outbursts, but still maintain my arguments and hope they are more supportive in the future. Worth a try? 👍
I did think of it, Silver Dream, but yeah, I think I would have a problem with it. I was upset-crying, not yelling, and I would have a problem apologising for that, as embarrassed by it as I am. No, I think I need to bite the bullet and ask him upfront if he can go on with me researching my own illness. There's no point in us continuing together if I am going to have to fight him for every test and trial. I think the whole problem hinges on him not believing in the B12 connection - this despite the fact that I was on anti-convulsants for ten months and they couldn't take the pain away, then two days after starting B12 I see noticeable drops in pain. By the time I've reached my first maintenance shot, two months later - no pain. And yet, somehow that's not a good enough result to postulate some theories and act on them. I really don't know how to work with that.
Either way, I'm getting too anxious about going to him because I know I'm going to have to fight him and justify everything I think. I have no problem with scientific rigour but a) I'm not a trained doctor and b) my brain isn't good enough to remember everything I've read and where I read it, and I can't possibly take extensive enough notes to answer every one of his concerns. Especially as IT'S ONLY A BLOODY TEST.
Sadly, I think I'm going to have to bite the bullet and have The Conversation, but if it goes against me I'm going to be out in the cold with an unconventional treatment and what NHS doctor is going to back me up with it and allow me to continue it? Frankly, I'm sh*t scared. And that isn't helping either.
As I've 'aged' I've come to realise that clinicians are there to help, yes and in an emergency your life can be in their hands. But for non threatening issues of health I am more of the mind that we are our best advocates and as far as the 'generalists' (GPs) are concerned they do their best, but haven't the time to delve into every nook and cranny. So we have to drive the process as we see fit. Hard as it will be at times it's in your best interests so worth the effort. That inevitably will conflict at times with the establishment. The key I think is to accept this and acknowledge the difficulty and work around it it.
Regarding your request for another coeliac test. Why not just go gluten free and se what transpires?
Yes, Silver, that's what I intend to do - either that or an elimination diet. I just felt it would make sense to retest for coeliac in view of the low IgA. Looks like that wasn't a shiny idea. Also, as you know, you have to have 6 weeks of gluten to be tested and the idea of stopping and starting again. Plus, let's be honest, gluten-free isn't a walk in the park, so I didn't want to take it on if it was unnecessary.
I think some of my B12 problems may have stemmed from (unintentional) extreme dieting for a year and a half beforehand, so I didn't want to replace one problem with another by another 'extreme' dietary rule!
In short, I thought it was the sane approach to be tested first, but obviously it was also the hard one. Ah well.......
Understand, but a GF diet isn't, in my experience, an extreme diet. And perversely I now consider my Gf diet as an optimum diet for our 'stoneage' digestive systems.
Maybe give it a go if the GP route fails and start to explore the delights of home made bread with all manner of additions like seeds, fruits and veg!
Oh, I suspect you are absolutely right, Silver. I think the doctor has just undermined my confidence and I'm frightened of being seen as yet another Gwyneth Paltrow crank. Well, tough luck, if that's what I have to do then I'll have to do it.
For me though there's the added anxiety that I am indeed going off on a wild goose chase, in the sense that this is not what is causing my neuralgia. I don't want to be sidetracked, as it were, into putting my energies into gluten free when it turns out something else is going on.
This is the trouble, I'm blundering around in the dark, because, God knows, the doctors aren't offering any advice, other than 'sit in your corner, take the drugs and don't make waves'.
Hi Polina, thank you for that thought - it cheers me up. I hadn't thought of it, but I reckon you're right. But I don't dare uphold it or I'll go in next Monday to get the tests done and either start shouting abuse at him or just punch him on the nose! But I still thank you for the comfort of it. X
Sometimes I almost think they want to make you feel crap! They don't like it if you have any idea what you're talking about. I had a very heated 45 minute debate at my last appointment which ended in a referral to an Endo that to be fair I don't really need but I don't think he liked my "knowledge" (yes patients do have brains and can read medical information). I'm thinking he fancies having a consultant do his dirty work. I've told them I will not go by TSH results again and will not alter any meds based on it again ( .....long story) but basically I'm nearly 40 and I'm having no more crap! Doctors have very hard jobs I don't deny that but some need to listen a bit harder, leave their ego in the car park and be a bit more understanding! Now that's my rant over 😤
Ah, leaving their egos in the car park - if only. When my doctor says he's uncomfortable with "colluding" with me on my "wild goose chase" because it is damaging to me, what he REALLY means is it is making him uncomfortable and he wishes I would stop it. He knows nothing about my psychological state because a) he never asks and b) I never offer the information, so how the hell could he possibly know what it will do to my psychological wellbeing?
Nope, it's his psychological wellbeing that's really at stake and that's why he's so entrenched about me doing things he's not comfortable with. Blood tests are so threatening, don't you know.
I'm cursed with the ability to see two sides of any argument - and to know that there may be many more sides.
So, when you say "I am experimenting on me. I'm the guinea pig here, and I am hurting no-one but myself. I could see all this palaver if I was asking for crack cocaine, but all I want is a coeliac test.", I can imagine the doctor thinking whether that is appropriate considering the current financial constraints. (Personally, I would spend more on testing and less on gluten-free prescriptions, but that is just me.)
It may see harsh, but we can't just test everybody who want testing for anything. There would be sharp-elbowed "worried well" hoovering up the budget by getting tested for everything - and that wouldn't help you either.
You say "Yes, it's that great old chestnut - let's treat by the test results and the hell with the patient." If you're going to say that, why on earth would you want testing? What would be the point. Remember I'm playing Devil's Advocate here.
You've decided that "it's his psychological wellbeing that's really at stake" which does make me wonder whether you would give your GP a fair hearing. If his concern is - and this is theoretical - that you have got yourself wound up and are fixated on a test which - he believes - would do you no good, he may think it is in your best interest not to have the test. (What would you do if the test came back negative? Would you accept the result?)
On the other side, the GP doesn't appear to have responded to your concerns or to have dealt with them. I don't know how well you were able to present your case for the conditions being different from the earlier test - to be fair, I had to read it a couple of times before I quite understood it (I think). That is one of the areas where the GP does seem to have fallen down.
In circumstances like this, it can be useful to involve somebody else as an advocate. It may be useful to talk to your local PALS who may be able to help. If all else fails, you may need to considier changing GP.
Hi Claudio, no harm in playing devil's advocate, or even outright disagreeing, it's always good to question everything, especially anecdotal reports.
I agree absolutely that the worried well hoovering up the budget is a bad idea, but I am not well, and I don't mean vague symptoms that I read on the internet. I have trigeminal neuralgia, of unknown source, as most of them are, plus I have had gastric problems of 15 years standing. Given that there was a legitimate low IgA test result on the last coeliac test that MIGHT indicate a false negative I felt it should be retested, with a different and more accurate test, to make assurance doubly sure. I don't see that as worried well having meaningless tests.
I also assured him that I would accept a negative, which I would. I MIGHT want to see a gastroenterologist at a later date to ask for a gut biopsy, but this would really be more for testing for what actually IS wrong with the oesophagus, and why I am getting fat malabsorption issues, than to further test for coeliac. After all, if coeliac is present after all these negatives then I'm pretty sure they'd notice it while they were down there. I hope.
I do always take someone with me, but I do tend to do my own arguing, even if I am not as shiny bright at it as I used to be (medication side-effects). I use these forums for idea bouncing, to see how viable they are, and to hear the arguments myself before I present them. I also use them for this, to have a good old rant and to see if I am right in believing the doc has been unreasonable or I am losing perspective. I believe in this instance that I am right because the doc knows I'm not an idiot and that I research my stuff thoroughly. He should also know that if there was ANY way I could avoid being in that hole of Satan that is called a doctor's surgery I would.
I'm afraid that the essence of the problem is that the doc doesn't believe in investigating the reasons behind my condition; it's incurable and degenerative, end of, as far as he is concerned, and so no matter what I do it will be wasting my time. You just can't fight prejudice like that, especially when he can back it up with the failsafe argument that he's just being scientific. No matter what I do I will always be on the left-foot with him; it's a given.
In that case, I would seriously consider changing GP. I've done it a couple of times in the past (or stuck out for an appointment with a GP I trust). Sometimes the particular combination of GP and patient just doesn't work. You definitely don't trust the GP, so what have you got to lose by moving. There's no need to see it as anybody's fault - just move on.
MY current GP is great. We don't agree on everything but the key is that he will always remind me that it is my decision. (When he was trying to persuade me to take statins, he said "If I were you, I'd take them," to which my response was "Then take them - have mine - nobody's stopping you." I'm guessing your relationship with the GP isn't at that level.)
It can be a bit of a struggle to find a new GP - and I'm guessing your state of health doesn't help - but it's certainly worth considering.
Yeah, Claudio, if I didn't feel so vulnerable with the B12 injections I get, I would. Unfortunately, like everything else I'm trying, the B12 injections I get are not a conventional treatment. I now have the advantage that they have been shown to work, so a new GP might be easier to convince, but oh, I had to fight so hard to get them that I am reluctant to go through it all again. And they are so very, very important to me.
But you are right, of course, I don't trust him any longer - perversely I feel I know his failings too well - and I may well be forced to walk though sheer disillusionment. However, for the nonce, while I am at least getting what I want, I will sit tight and devote my energies to the right things.
It's your health so you have to keep fighting! I had to fight to stop my GP reducing my Levothyroxine based on TSH results only. Eventually he listened and agreed after I stood my ground! I've decided to go gluten free. I am taking supplements for low Vit D and iron and hoped going Gluten free could help this/ poor absorption. My coeliac test came back "highly unlikely " but perhaps I'm intolerant? My itching has reduced after 6 days anyway!!
You're absolutely right, Polina, it is your health and you're the only one out there fighting for it, but by God, sometimes you feel like something out of a Spartans movie - stuck out on a promontory fending off the hoards with a stage sword! I am absolutely sure this hard-fought-for test will be negative - life's like that - but I have a coeliac book that shows the 'iceberg' of coeliac and how only the top third are considered 'true' coeliacs, but there's two thirds under that that are likely to develop the disease at a later date. Do you realise how absurd that is? - Yes, you're showing symptoms and it's probable, but you're not showing the right test results. Let's wait till we can see some irreversible damage then we'll let you have your coeliac badge of merit.
I often get teary in the doctors due to frustration as i feel I don't get very far with them when I try & explain how i feel BUT experience has shown me that following my gut (excuse the pun!) has put me onto the right path, with the doctors eventually catching up with me. It is a frustrating path, but please carry on with your quest. I wouldn't worry about having to get emotional & assertive to get a test done, sod it, at least you are trying to be proactive about getting your health back. Have a look at a website run by Micki Rose, purehealh, and her affiliated sites & facebook links, there is soooo much information on there that may help you & it also gives you access to private tests that are available. it just might help point you in the right direction. she is a naturopathic nutritionalist who is so down to earth & knowledgeable, it has helped me hugely & helped me get on the right track. Now I have a totally different attitude to doctors & feel that I now have to be my own health guru & just use them to fill in the gaps. Now dont get me wrong, I do respect them & they can be invaluable, but i have definitely learnt to trust my instincts & listen to my body, we are our own best advocates. It os a huge struggle, but worth it.
As an aside, if it was my doctor & lets be honest in some ways he has been better than some, I would just thank him for agreeing to the test & thank him for continuing to work with you to sort out your issues. That way it will put him on the backfoot & you back on track with him & just keep in your mind that you are just using him to get access to these tests & you are just boxing clever to get them!
Yeah, Lizzy, boxing clever is what it is, essentially, but my God, it takes it's toll on you. Not least by having to bite your tongue all the time. I'm finding that now I'm afraid to go see him if I know I'm going to have to ask him for something I know he won't like and I'm wondering if our relationship hasn't gone past the point of usefulness. Trouble is, I cannot afford to lose my B12 injections. They are vital. And I'm not sure other docs would give me them.
Part of our argument was about how he felt it wasn't a question of him "believing" in what I was doing, but I feel that it very much is. Not in believing I'm right; I don't expect that, but If he can't believe in the usefulness of trying to help yourself, rather than sitting in your corner, drugged into a stupor and waiting to die, then I don't know if I can work like that.
It's an exhausting condition, chiefly because of the hard drugs, and I don't have the energy for fighting.
Anyway, I'll get the test done and take it from there. Live to fight another day...
Hi Chancery, well this appalled me so i feel for you as do others and quite rightly by the replies. So firstly I don't like your Dr's bedside manner in fact it stinks.
Now as for IgA levels you are both right in that 0.73 is less than 10% below 0.8 so it almost certainly is within tolerance. However he is not being sympathetic to you or how you feel when he should be and he most certainly should not make you feel humiliated.
So what should you do, first have another blood test and make sure that you ingest lots of gluten in the lead up to the test, which's what causes mis diagnosis sometimes as they've already gone gluten free.
Also do you feel better on a gluten free diet because gluten affects more than just our villi so if you eliminate all gluten from your diet and feel better then you know. And you could have NCGS (non coeliac gluten sensitivity) Many people with other conditions like thyroid feel better on a gluten free diet and it is your body and if you feel better then at the end of the day being diagnosed is only a medical label and once you know that gluten makes you ill/feel worse, then when buying gluten free food or ordering gluten free food at a restaurant no one is going to ask if you've had a biopsy. So even though I'm glad that I've had a formal diagnosis there are times when 'we' have to take responsibilities for ourselves and if this mean you going gluten free off your own bat and feeling better for it, who is the main beneficiary?...you and those closest to you.
I also think that it would not hurt to change Dr's as I feel that your relationship with your present one has degenerated into an unhealthy and imbalanced relationship because he has pigeon holed you.
Now I don't know if you realise it but you're 'our' star poster, that's right our star poster because you've made 3 posts on GFG that have all had over 50 responses and I can remember one previous post that had 42 replies. But 3 with over 50 replies shows you obviously know how to communicate and interact with others. It is also a gift to be able to share our feelings openly with others rather than bottling everything up.
So chin up girl, pick yourself up dust yourself down and it's onwards and upwards and one thing is for sure, you're a plucky lady, so good for you and good luck with all this.
Hi Jerry, thank you for the kind words. And I had no idea there was such a thing as a star poster - if only I could use it for merit points with the doctor!
Yes, you are absolutely right about the 0.73 being within tolerance. The doctor told me that, at great length. He had discussed it with a biochemist, no less, and had been reassured it was normal and therefore the test was probably accurate, which it probably is. BUT my trigeminal neuralgia was sent into remission by being given B12 shots (which my doctor was also against) and my B12 level was 383, considerably over the NHS deficiency level, which I think is 200. But just under what B12 deficiency experts think it should be, i.e. 400. I explained to the doctor that I felt the same concern with the IgA. What if, for me personally, 0.73 WAS a deficiency and it was muddying the results and giving a false negative? I told him I didn't feel comfortable with it. He, in turn, told me that he felt he was "colluding" with me (his favourite word) and that it was going to "the dark side", his great fear in medicine.
After a lot of argument and counter argument he was saying to me that he felt this "wild goose chase" was in danger of "harming me" (he meant it was psychologically damaging, as in I was too focussed on it) and I realised I had to explain to him the most harmful thing was having no hope, doing nothing. That this gave me something to hang onto, a goal to work towards. That the prognosis for Trigeminal Neuralgia is so appalling, ANYTHING is worth pursuing if it might pay off, particularly as it is only a blood test. Unfortunately I always get very teary discussing the psychological effects of the disease and yes - guess what? - I started crying. After that I can't remember anything clearly, except being mortified and very, very angry that he'd put me in this position. I always feel that doctors should be able to use their imaginations a little when they know how bad a condition is and how equally awful the side effects from the medicationare. But apparently they can't.
Anyway, that was the sad demise of the conversation (my partner had to stop me because I was repeating myself - further humiliation). I got my test, grudgingly, in frigid air, and I'm due to go in on Monday and have it. He is giving me the test purely as an indulgence and I kind of think he hates me for putting HIM in that position. The irony. So now I have to face down my horror of 'the day after the confrontation before', which will doubtless start producing anxiety and panic attacks about Friday, worsening into Monday. This is what I mean. I feel the relationship has deteriorated too far to be useful, but I really, REALLY need these B12 shots and I'm afraid another doc won't give me them as they are an 'unconventional' treatment. But I might just have to bite the bullet, because I don't think I can live in fear of discussing ideas I know won't be popular, and of being thought a desperate crank who will believe anything to avoid facing up to a diagnosis of Trigeminal Neuralgia.
Believe me, I could explain to him I went through six months or more of suicidal thoughts and a despair so deep there isn't a name for it - I've faced up the diagnosis, trust me - but he wouldn't believe me. After all, I'd cry if I tried to explain that, and who trusts a woman who cries?
Hi chancery, I'll tell you what i think his reluctance is down to and that's money as Dr's are responsible for their budget responsibility, plain and simple. But he also has a responsibility to you his patient. So don't feel bad about it as he is carrying out your wishes.
I think that he is being coercive using words like colluding as that is very manipulative and underhand. But you have stuck to your guns and you are having the blood test. So why have panic attacks? you will only come across as nervy and convince him that he is right about you, so I'd try and imagine your self having the blood test feeling confident and you should feel confident because he is complying with your wishes. So I'd thank him for letting you have the blood test and say calmly that you know he doesn't think that you need it but it is important to you for so many reasons. And you will show him that you can rise above his attitude.
Now it is understandable that you have negative emotions about being diagnosed with Trigeminal neuralgia so welcome to the human race as everyone feels negatively about having a life long illness. The secret is in how we then deal with it, in the long term. So that we accept our selves and our issues and learn to make the most of what we have rather than dwelling on it. As on one level it is only a medical label and what is paramount is how we feel about ourselves deep down. And for this we need to feel OK and you don't at the moment but you're dealing with this and if your blood test is negative then what have you got to lose by going gluten free and seeing if you feel better and if you do then that's great. So what I'm trying to say is try not to look too far ahead as this is like looking at the top of a staircase and not seeing the stairs and by taking it one step at a time you reach the top. (I've 2 little get to get me up the mountain and 2 little feet to get me down again)
So good luck with the blood test and I always just look the other way as i don't like the sight of blood and I'm a blood donor. And don't let him upset you.
Couldn't agree more, Jerry - I'm sure budget enters into it. Unfortunately, I think there's some kind of ego issue at hand too, and that's harder to fight. People can be very cunning at hiding their ego problems so it makes it hard to track where they are coming from, and how to deal with them effectively. He is definitely a control freak. He was annoyed both when I suggested doing my own B12 injections and then again when I said I would pay for the tests myself, but I'm still not exactly sure why.
I'll be honest, I think I'd have a problem thanking him for anything right now, let alone giving me the tests, but I appreciate where you are coming from with that. It makes perfect sense and would be the smart thing to do. Unfortunately I'm still too mad to be magnanimous, even if it's in my best interests!
Anyway, we'll see how the land lies on Monday, and whether he is sulking with me or not. And I shall definitely try wheat-free, if not gluten-free (haven't made up my mind yet what would be the smart way to do this - maybe even an elimination diet) if the test turns out negative.
Thanks for all your kind thoughts. I always appreciate your "2p's worths"
Hi Chancery, Coeliac disease does not always show up in in a blood test. The only way to be sure if you have this condition is to have a biopsy. This is the only way you will know if you have this condition. One can suffer for years before this condition is diagnoseds.i do know this as I sufferd for years with anaemia. I've been on a gluten free diet foe 10 yrs and feel good. No more anaemia. I do have osteoporosis, so thats another reason why you should be checked for CD as this condition does effect the bones.
Thank you, towels, I had read that gut biopsy was the only true way to get a certain diagnosis, but I promised him if the test was negative again I wouldn't ask for a biopsy, so I'm hoist by my own petard!
I would change my doctor, or the practice. I too was tested for coeliac disease in 2013 & tested negative, then a new GP said the test had been inadequate (I don't know what she meant by that) & tested me again in 2014. That test was positive and at the end of last year I had an endoscopy that confirmed it. A doc. that makes you feel so bad isn't worth having.
Hi Distracted, yes, I'm beginning to think that. More than anything, I don't trust him any more. I don't trust him to listen, or more importantly hear me; he is too busy protecting his "ethics". I would find this absolutely admirable if I was asking him for dangerous cancer drugs or to put earwigs in my ears and dance round a fire, chanting, or even if it was costing me or the NHS a lot of money, but none of these things are true here, which means I'm being put through this to protect his ego, essentially. That is too much for me to tolerate comfortably and all it's doing is enraging me or making me lose all hope. Neither feeling is what I want from my doctor.
Just a quick query - how do you know you have a low IgA result? Is it part of the normal coeliac testing?
Just wondering as I have PA and think I'm probably coeliac, though I'm now three years gluten free and not going to go back on gluten for anything on earth so I'll probably never find out.
Despite the PA diagnosis my GP originally didn't want to test me when I said I thought I had a problem with wheat. I went to a private allergist who sent me for a coeliac test and told me to go back on gluten for 10 days beforehand (I'd been off for six months). I did it for a fortnight in the end. Then my results got lost and I was just told that it was "negative", but I've no idea about IgA. It all seems a bit of a farce in retrospect and I've never trusted that test.
Good luck and stick with the testing - it's the one thing I regret not doing!
Hi Freelancer! Yes, it was tested as part of a collection of tests for coeliac in 2013. They tested my IgA, which was marked as low on the test results. They also tested me for some kind of protein - I forget the damn name now - which shows if you have inflammation in your system. I didn't. And lastly they did the gold standard transglutamase (not sure how to spell that either!) IgA test, which was also negative. But yes, I have to admit, me being me, and generally anxious, that I wouldn't be happy either with tests results I hadn't seen personally - especially if I'd paid for them!
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Anyone had Vit B12 deficiency before being diagnosed with coeliac disease? 
GP didn't want to test me
New here, can anyone offer any guidance please?
Non-gut related symptoms - could it still be CD?
