Is there anyone here who's actually managed to get a diagnosis of NCGS from a UK doctor?

Just wondering if anyone has had any success in getting an NHS healthcare professional to diagnose them with NCGS... I've been ill with supposed IBS for 6 years the last 18 months being constant, chronic, debilitating symptoms (and dramatic weight loss) which culminated in Colonoscopy and Endoscopy (with duodenal biopsy). All negative for anything sinister, and i've been repeatedly blood tested by different GP's as, quote, 'that sounds like Coeliac Disease', again all negative. I apparently have 'nothing' wrong with me! Finally out of desperation, feeling so unbelievably ill and several months after the Gastro doc who did my tests despatched me and blithely said with no explanation ' oh, you might try giving up wheat', i decided to go GF. Two and a half months in and a few blips along the way, i feel greatly improved. I actually don't want to believe that this GF diet is working, but it is. Now i'm really keen to actually see someone who can give me a more informed opinion (i know it's a vague area at the moment, so not expecting too many answers) as i really would like an expert overview. I didn't think i'd be desperate for an 'official' diagnosis if the diet worked (and it certainly seems to be working) but i feel like i'm in a diagnostic no-mans-land. I've just managed to get a dietician to recommend that my (pretty useless) GP sends me for a wheat allergy test, but I really would like my medical record to at least be accurate if this is what i have. Anyone had any luck? Anyone been to Royal Hallamshire Hospital by any chance (they seem to be the leaders in the field as far as i can tell)??

25 Replies

  • Wheat allergy would not give you the same symptoms as gluten sensitivty, allergies are different & there are other threads on here with that info.

    As for the hosp question, yes, but it is a dedicated coeliac clinic.

    IBS - look at the Stanford University research on FODMAPS - makes a lot of sense and is my go-to on bad days when lactose free,GF, isn't enough.

  • I am kind of in the same position as you so I can sympathise. I haven't had the in depth testing that you've had, only blood tests including a negative coeliac blood test. Since I've stopped gluten and lactose I am a lot better bit not 100% perhaps as I no longer have my gall bladder. There's a specialist I've read about who will diagnose NCGS. I'm going to google him and see if I can post a link. I think he's based in Luton.

  • Here is the link re diagnosis of NCGS

  • This is an interesting question because I thought my GP had diagnosed me with NCGS. However, when I try to recall the conversation from a year ago I don't remember her specifically saying I had NCGS. I had blood tests. At this appointment she said I would have to consider giving up gluten even if the tests were negative which they were. She also agreed that even if the blood tests were negative that was not necessarily conclusive either and she seemed to agree with me. My GP knows I have been symptom free since going GF, has referred me to a dietician (I went on a FODMAPS programme) but has not said I am NCGS. At this point in time I do not need any referral to a specialist for anything. So I don't know whether I am considered NCGS but for me it wouldn't make any difference because I am taken seriously by the practice, manage my own care and I am symptom free unless I accidentally eat gluten. I can see that it is helpful for others for various reasons. Next time I visit my GP I will ask her as I am now curious. If I run into any medical problem that I consider could be associated with NCGS there may be a problem with diagnosis then.

  • I'm in the same boat as urbangirl.

    I've only had negative blood tests and a chat with my GP. My record now reads'feels better not eating gluten so on gluten free diet' and that's it.

  • Well that may be 'it' for you, and that's great. But others can not afford such a diet, which is why the government implemented a system to subsidise gluten free staple food for people (and free for those on benefits) . However if you do not have an official NHS diagnosis of it you are left, literally 3x out of pocket for your grocery shopping than you otherwise would be.

  • My friend was same but got diagnosed as a silent coeliac after a micro capsule endoscopy. swallow tiny camera & it takes lots of photos more accurate than upper endoscopy as it goes further into bowel. before all her tests had came back negative as well prior to this.

  • Jane24, PLEASE tell me how your friend managed to get a micro-capsule swallow ?! It's crazy because it should be cheaper than an endo but yet the Nhs insists on this potentially dangerous and archaic method of examination *

    do I have to see an gastro-doc and then when he refers me for the endo operation do I ask for a capsule instead? what if they decline? etc..

    A reply would be greatly appreciated


  • Jane24, PLEASE tell me how your friend managed to get a micro-capsule swallow ?! It's crazy because it should be cheaper than an endo but yet the Nhs insists on this potentially dangerous and archaic method of examination *

    do I have to see an gastro-doc and then when he refers me for the endo operation do I ask for a capsule instead? what if they decline? etc..

    A reply would be greatly appreciated


  • It's difficult for the GPs/hospital doctors as they 'need' a specific answer to help them diagnose anything (i'm not just talking about CD here). One of the problems being that for a true diagnosis of CD they need the antibodies present and to see the raised villi on endoscopy, therefore the poor person has to consume gluten until it's all done. If this takes months, then someone is suffering. I haven't had a proper diagnosis of CD, but I have a long history of every other symptom, including blood test results that mean something now (anemia, spiking bilirubin), as well as infertility and an autoimmune RA BEFORE the bowel symptoms started. The idea of knowingly consuming gluten again for 6 weeks or so to simply get a diagnosis is unthinkable! So CD or not CD, that is the question? ;) However, we need to get some awareness through to these medics about NCGS, after all, the treatment is the same as for Coeliac disease: a GF diet. The only difference I can see is that you can only be prescribed the GF foods if you have a diagnosis of CD. But, IMO I'd avoid these things like the plague for at least the first few months of trying a GF diet, and probably forever after. I gave up the ready made things as they continued the symptoms of CD/nonCD, now I cook only from scratch: time consuming, but it works 90% of the time. Hope this helps!

  • I was told by my gastroenterologist not to eat gluten, after a gluten challenge that made me quite ill. Whether this counts as an official diagnosis I have no idea!

  • Hi very interested to read this as I have repeated tested negative for coeliac through blood tests and also an upper endoscopy. I was wondering what exactly your symptoms are Whittler67??? I have been diagnosed with a functional bowel problem but I suffer every day from nausea, fatigue, morning diahorrea and brain fog..... does this sound like a food intolerance of some sort??? my friend recommended that I go wheat free as she says you can be sensitive to it without being intolerant???? Todays an especially bad day of nausea with the result that I havent eaten much all day - head very fuzzy..... also only diahorrea in morning????

  • Seems to be a vast difference in diagnostics between the GP's. I already many Auto Immune problems so when I started to feel ill, Acute Cramp, Nausea and Sickness and log list of documents Symptoms, My GP said I think it's CD, which with my conditions would fit, so Don't eat Wheat or GF substitute's for a Month which I duly did. Needless to say the Blood Test came back Negative for Antibodies, which my CD friend said no wonder if you have been on complete exclusion diet, should have kept you on Wheat etc., then did the test. So now he says it maybe , but your Wheat intolerant so stop eating it!? But now I find that it's not just Wheat I react to , it maybe Wheat free but find it my contain Gluten, so I now eat GF foods, Like Sallydogsmum as I can't trust processed GF foods.

    I know saying you are a Coeliac doesn't make a difference to how you have to follow a GF diet, but it doe's confirm that you can put on your Records, so it can be recognized by the healthcare providers, I know someone who has the same problem getting a confirmation to her CD, she asked as a NDGS, to have her GF status to be put on her hospital records so if she can't relay her dietary needs when in hospital, she then can't be given wheat or Gluten products during her stay, she was told she couldn't do that as she had to have a CD confirmed Diagnosis. Go figure... no consistency throughout the health service from region to region.

  • I don't know peoples thoughts on this, but I was told by someone in the employ of the NHS at my local hospital, that GP's and other's have a silent quota on People with illness's that impact on the cost of Free Prescriptions and CD is one of those that you can get free prescriptions for, is on that list, I know it all sounds like a big brother conspiracy, but what you can order is being cut back year on year, and some trusts want to stop GF Foods being on prescriptions full stop as the food industry are making it. easier to access the products.

    Less people diagnosed less prescriptions Maybe?

  • This is all really interesting, thanks. It's difficult to summarise symptoms out of context, but briefly, they've changed and developed from episodic attacks of diarrhoea, pain (over 5 or 6 yrs) and exhaustion, to constant, daily symptoms for 18 months solid starting April 2012 including reflux (never suffered from that before), nausea , vomiting (occasional), palpitations, chest pain, diarrhoea including painful night-time diarrhoea waking me from sleep, joint pain, 'brain fog', weight loss (a lot), headaches, increasing inability to concentrate, fatigue...and more. Until all the big exploratory tests were done, each doctor i'd seen tested me for Coeliac but it was always negative (and i'd had no reason to go GF at that point so was still eating gluten through all the tests). The really odd thing for me is that i've had increasing anxiety over the period of being ill (7 to 8 yrs now) which has gradually got worse and worse to the point of it dominating my life and the docs have always resorted to the 'ah, it's IBS caused by stress/depression' diagnosis, 'go and have some CBT/take these anti-depressants' (i'm NOT depressed) due to the lack of evidence of anything else....the bizarre thing is that within a week of going GF not only had a lot of my gastro symptoms started to clear (i'm still not 100% well though, nearly 3 months in) but the undercurrent of anxiety just stopped. Bang. Like someone had turned a light on in a dark room. Can't believe it. I've seen a (private...expensive...can't afford it!) dietician for the FODMAP diet and i can see the logic in the diet, but with a lot of the non-gastro symptoms i've had, i find it hard to believe that they'd be caused by the fructans (which is where the debate centres around IBS/NCGS crossover and fodmaps as far as i understand it) in onions, artichokes etc ??. I accept i might be wrong though. The reason i mentioned the wheat allergy test (yes, i'm aware that symptoms differ) is that from what i've read, and someone please correct me if this isn't right, the only protocol for diagnosing NCGS at the moment is to rule out Coeliac (which i have to trust that my doc has done) AND wheat allergy - NCGS is what is left if you improve on GF diet, but test -ve for either of those conditions. I'm on a rather odd GF learning curve at the moment, without a 'proper' diagnosis that would justify it, but even if i'm not 100% better i'm a million times better than i was; i'm very grateful for that. The fact that the anxiety that has been plaguing me seems to have just vaporised (still freaks me out a bit - i'd got used to being a wreck) means i'm sticking with the GF diet. I have no idea what the connection is, and i suppose i might never know....BUT, i still feel that if there is a possibility that this - NCGS - is really what is wrong with me, it changes the picture of my medical record rather dramatically, and i'd sort of like it acknowledged for future reference. GFmom, thanks, yes, i know about Dr Rostami, but i'm not sure if he's still at Luton & Beds - i may just try to track him down though.

  • Hi Whittler, I've got NCGS and acknowledgment off my GP of it, possibly due to the BMA issuing a letter to GP's around the same time as I was going through the various tests. I believe this was after studies done by the University of Maryland in the USA.

    I had so many of your symptoms, IBS, brain fog, etc. Just gradually getting worse until I was sent to an immunologist because of the severity of some symptoms and tested positive for wheat allergy in blood, though in skin tests the reaction wasn't severe enough to be a "true allergy".

    I don't have the antibodies for Coeliac Disease although I have other auto-immune illnesses which often occur concurrently to CD and get a blistery skin rash when I eat gluten. I also suffer from an anxiety disorder and thyroid disease which can be related to problems with gluten. Lots of horrible and seemingly unrelated symptoms vastly improved when I became GF.

    With regards to anxiety, I think gluten intolerance can put an enormous stress on our systems, particularly our immune system, but also on the adrenal glands which are responsible for our fight or flight reactions. I'm sorry to say that I don't think you'll get the medical acknowledgement you are seeking from the medical establishment, partially because of politics (as someone else mentioned they don't want loads of NCGS claiming prescription GF foods!) but also because they are so dogmatic about accepting food intolerances as genuine physical ailments rather than psychological in nature!

    Think it's also worth mentioning you might want to steer clear of some of the harder to digest replacements which make up a lot of Freefrom foods, ie, corn, soya, oats. I found I had reactions to them too. This may be because they contain their own forms of gluten or because they are largely imported from the USA which means they may have been genetically modified. I eat a higher protein diet and stick to more easily digestible, lower gluten non GM like rice, potato and buckwheat when I do eat carbs. Feel so much better for it and lost weight too! :)

    Best wishes, Rita

  • Thank you Rita, allergies and Lynilou - all really good advice. I wish i'd been lucky enough to meet your GP, Lynilou, however i think Rita may be right about the politics at play here...I think i may have one more go with my GP as it's taken me so long to even acknowledge that this might be diet related (yes, sounds daft, i know, but when you're repeatedly told it's stress related as the tests are normal you start to believe it! That's dogmatic alright!) and i think they should at least be aware that i've seen some (fairly significant) improvements going GF and intend to stick with it; if that's all that's noted on my record, so be it.

  • Will you let me know if you do track him down? I really sympathise with your post. I've been gluten free since January and my family and most of my friends are supportive but I still feel like a fraud without a proper diagnosis. The last GP I saw said perhaps it's gluten sensitivity and to just keep avoiding gluten if I feel better but it doesn't feel as straightforward as that when I have to be so fussy and I have to expect people to accommodate my needs when I don't have an official diagnosis.

  • Hi Whittler67, the only observation I could add is, have you been tested for lactose. After having been gluten free for nearly 10 years and still having major problems, I was given a lactose test and bingo I was off the scale with a reaction. Feeling so much better having not eaten lactose for nearly a year, but I really know about it when I get caught out. It is nearly as awful as being glutened. Good luck.

  • Good luck at the Hallamshire, I am lucky to now have a GP who worked there at the specialist dept for a while before becoming a GP and he really is tuned in to coeliac disease. I have recently had a new occurrence of acid reflux and IBS and have also gone down the FODMAP diet route which I find has changed not only my weight and symptoms but also my outlook which had gone from positive to anxious, I am back to my positive self again. I do believe that our diet does affect us in many different ways, as you say having a diagnosis certainly helps as it gives us a reason to avoid certain foods. My only advice is to keep on at the drs, it took me 5 years to get my diagnosis before my tuned in GP came on the scene!

  • I may be a bit of a numpty here, but a newbie on CD, can you explain what FODMAP is ?

  • See here More in the IBS community on Health Unlocked

  • Thank-you, you learn something new everyday.

  • Hi I had the same tests as you and although I had gastritis, polyps & hiatus hernia the gastro told me there was nothing wrong. I told him I was now gluten free and was starting to feel better, he said there was no need!

    I explained to my doc what I was doing and how I was feeling, she could see the difference in me (I had also lost several stone & my 11 months 'pregnant' belly) she said oh you must have NCGS however I'm not sure if it was a passing comment or a diagnosis lol.

  • See, I really think after reading all this that it is rather evident the Nhs is actively discouraging diagnosis because in reality EVERYONE is allergic/sensitive to gluten/wheat because Humans just SIMPLY aren't supposed to be eating it! I mean think about it, It's GRASS!

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