I've been around the houses quite a bit on here. My main issues are 1) lack of diagnosis for coeliac with all the coeliac symptoms and health impacts; 2) inability to tolerate codex level GF.
Anyway, had loads of appointments and shunting around over past few years, and decided to revisit the whole story, back to when I had two separate coeliac blood tests between 2004-2007. Neither test followed the NICE clinical guidance, and second test involved me having to educate the GP on the need to have gluten in the diet for the test. I was not offered the gene test/IGA test to show whether produce the correct antibodies, and no biopsy was offered at that point despite all the symptoms.
Anyhow, fast forward to 2021 and I go looking for the original test results from that 2004-2007 GP practice, and they have no record of the coeliac tests or copies of the medical records for those. They have not passed them on to the subsequent GP practices I've been registerd with, nor has any subsequent GP or gastro sought them out. Only one coeliac test is available from another GP practice in 2010, but they simply record as no evidence of ceoliac without actually recording/retaining the test results.
To say I am angry would be well short of the reality of where I am with this all now.
I've had enough. Absolutely had it. I did suspect I would be going the medical negligence route on this and had already made contact with a law firm earlier this year. The discovery today that the original coeliac test results were not retained nor sought out/available to any GP/gastro since then has sealed the deal.
I will keep you all posted on how this goes, but I think there will be no change until we start challenging things legally.
Hi Mise,That is b****y outrageous!! No doubt you are fuming. It is hard enough battling the illness itself. Doctors should be made completely brought up to speed about coeliac disease and ‘coeliac crisis’.
Apart from vitamin D and water we get all our essential micronutrients from food so ALL BODY SYSTEMS can be effected. So, if you have a problem with your GI tract then you are going to be ill. It will present in many different ways and we constantly are fobbed off even though we are sick.
I whole heartedly support you in your decision. Loosing your records, not referring is totally incompetence and negligent.
I recently had to explain (over the phone) to a health professional in my GP practice what the difference was between a colonoscopy and a gastroscopy was. I laughed because it’s so absurd.
Thanks Narwhal10. I think our GPs and clinicians benefit greatly from the tolerance of their patients to not haul them over the coals and sue. I for one ran out of patience years ago. Between asshole doctors and asshole food producers, my health is destroyed and I am angry. I'm willing to sue everyone at this point. Your doctor literally doesn't know his arse from his elbow!!! Man alive, how are they so badly trained and thick. The basic names of those two procedures should be indication, if nothing else. Don't even want to know where they would put a thermometer! In the practice subsequent to the one that lost my coeliac records I was told a mark on my face which I knew to be skin cancer wasnt' - I went to another practice to get it diagnosed. Years previous to that I had a GP write me a repeat prescription from someone else's medical file (back in paper based days). He literally didn't note a) it wasn't what I was asking for; b) the file belonged to someone else. It was for the pill, and I actually recognised the person who's file he had out instead of mine (girl who used to go to same school as) - major privacy breach for her. Something very very wrong in how GPs are being trained. I appreciate it's full on and joyless job, but when the basics are so bad, the rest will never be good.
I totally understand your anger and frustration. It’s hard battling illness, and when they don’t understand the condition - they must admit it, refer as it is beyond their role and scope.
Oh my goodness about the mark on your face and breaches of confidentiality are a big NO NO !! I hope you pointed it out to that GP you knew the lady - as it also has huge moral and ethical implications. It is a doctor’s responsibility to keep up to date.
I rant to my best friend and they tell me to calm down which so works!!! They’ve never been ill. Have we got a good quality of life ? It’s not through our own fault. 😡
We have no quality of life from what I see, experience and can conclude from people commenting/posting on this forum. No one should face years of pain and bad health owing to GPs not being able to do the basics, nor should we be faced with constant risk from foods that are supposed to be safe. Telling people to calm down when they are expressing anger/pain/suffering is basic victimisation and gaslighting. Who tells the person in the wheelchair to calm down when there are no wheelchair ramps? You wouldn't dream of doing it, yet a 'hidden' illness can be negated as much as anyone wants. Coeliac shaves years off lives if untreated. It causes lifelong damage and disability with poor bone quality, damaged organs, etc. I am angry for us all at this point and want to get louder, not calm down.
When we first moved to our small village about 30 years ago, there was a lady, much older than me, but with the identical name at the same GP surgery. On a number of occasions, her notes were brought out instead of mine. I was in my thirties, but she was over seventy. Surely common sense would suggest that my needs were not the same as hers.
I totally agree !! We should join all join forces. There needs to be some serious education. It is an awful condition. I’ve now got to the stage where I purposely ignore some family members and friends because they will never get it. We need our energy for us, our daily battle and some equality.
Strength in numbers. There is a guy who runs a blog/semi-campaigning site in US and he is very outspoken and on the ball. He produced a post for coeliac awareness month about people's horror stories in trying to get diagnosed. It's a scary read: glutendude.com/doctor-horro...
Yes I’ve seen glutendude. He’s awesome. I’m bidding my time, I compile, record and laugh at foolish clinicians. Give me 2 years and I’m going down the same route as you. 😉
My digital records really only go back to 2007. It was my first diagnosed 'illness' ie Hashi's....so, I think that's why. GP tested me for coeliac then...it was negative, but is not on my digital records. Everything prior to that is recorded as 01/01/???? eg Daughter 01/01/87, when she was actually born in May 1987.
I've just written a 'complaint letter' to my local hospital. I went by ambulance to A&E in Feb, and they sent me home with the conclusion "likely tension headache" when I actually had Acute Kidney Injury which I believe could/should have been prevented. I was just generally treated like shit too The only other time I've ever had to go to A&E was for a heart attack....and the Consultant in charge wanted to send me home then too. A cardiac registrar put his neck out and called his Consultant down to over-rule. I didn't complain that time, but think that I should have.
And don't get me started on the Basal Cell C. Looking at my records 'past significant' I saw the GP on 01/01/2001 (so sometime that year), and she noted Basal Cell C....only she didn't tell me that. I went back a few times over the years, and some 6yrs later was referred to dermatology. I was then sent to a small local hospital to have it removed. The Dr doing the task was a GP with an interest. I should have realised that things weren't going to go well when the Dr asked the nurses what she should do next ie continue with the continuous stitch, or individual stitches. The nurses agreed on continuous. They leave long ends on a continuous stitch, so that they can grab hold and tug it to hopefully pull it out....10 days later, after much tugging by the nurse saying sorry, sorry, the ends snapped off. I contacted the dermatologist to ask for the removal of the stitch but she shrugged her shoulders "It will either come out on its own, or it won't" me: "but what about infection?" reply "pah" she was French. I was sitting at work about 2 weeks later, when I think I let out a squeal. Imagine a boil being strangled by fishing line. Antibiotics were followed by a 20 mile journey to the nearest 'plastics' department, who got the stitch out in about 10 seconds.
Some 7yrs after that I was referred to St Thomas's for mohs surgery to get it done properly as it had grown back and I think my GP surgery were worried about a negligence claim. I now have a very neat scar about 6" long that you can hardly see.
I have completed the "Women's Health Strategy: Call for Evidence consultation. It is open for men to give their views too.
So not just me then!! These really are horror stories, and so many GPs and doctors spared legal action when they shouldn't. Sending you home with a heart attack??? FFS - that is unbelievable. Your basal cell sounds a right horror story. It was basal cell I had also. I would not have known it was that only my sister had the same thing and was fobbed off for years with creams. She then went to see a plastics doctor as she had health insurance. He operated, tested and told her it was basal cell, so she had to go back for second op to make sure all gone, and then it came back again. I never would have thought to get checked, but for her story, and even then the GP fobbed me off and, after looking at me from a great distance - told me it was nothing. Was almost two years before I got another practice to refer me and it was good from there on in. That's a shocking story about the stitches. Unreal. On a darker story my other sister had breast cancer, full treatment, it came back, but her GP kept telling her for about 8 months that she just had post-flu tiredness. By time she got diagnosed again, too late to do anything. There are GPS out there who need to be put up against a wall and shot, and I have no issue saying that when people are living lives of misery, pain and/or dying before their time. No one is perfect, mistakes will happen, the job of doctors is tough, but the lack of care for what patients say, the failure to check and double check on test results and the complete failure to change practice when wrong happens is astonishing. The NHS is great, but the NHS is massively flawed and they cost themselves in the longterm in terms of the extended treatment people need because of mistakes, and the medical negligence cases. So I wonder if your original coeliac test from 2007 is in paper-based records, if not stored electronically? Pretty poor if you have a diagnosed autoimmune condition but no one has retained the records.
Oh Mise, I'm so sorry about your sister, words can't say.
A lot of women get sent home from A&E with heart attacks. I got lucky with the registrar that day.
I'm thinking of putting in a FOI request asking how many women v men are discharged from A&E with 'tension headaches'. If I had the answer to that I might consider legal action.
I'm currently dealing with only 1 GP at the surgery, and the reason for that is because he is the only one who asked how I was.
Unfortunately there seems to be a common theme in many of these stories - being a woman, and consulting a male doctor. Thank you for your kind words. I wonder if my sister had a female doctor, would the story have been different. I'm pretty sure I've seen stats on women being negated for heart attacks. Amazing that everything a woman reports is invariably linked back to all being in her mind, be it a 'tension headache' or psychological. We have not come any distance really from the Victorian attitudes to women and illness. Some excellent people to check out on this are Caroline Criado Perez who writes about lack of medical/research data for women across all areas of life, including health, and Dr Jess Taylor who talks about women being repeatedly diagnoses as mentally unsound because they have been through some sort of trauma. Why women don't just burn the world down is beyond me!!! Every day is a new reason to be negated or underminned. You are, literally, lucky to be alive given your experience. Good you have at least one GP who asks how you are. My go to saviour at moment is a really lovely admin person at my GP practice who is helping me hunt down medical records. None of this should be happening in 2021 but here we are. At least they have stopped burning us at the stake - that's something to be thankful for at least....
"Why women don't just burn the world down is beyond me!!!" I know!
I've always been independent, but never really a feminist, This medical/health thing is a step too far for me. I could compete with a man at work, but this...........
And, unbelievably, I've just seen a facebook ad for a new private GP service in Wales/Bristol. So now, you can pay £120 to be (badly) treated. Follow up appointments cost almost as much. You pay more for a referral. Minor routine procedures being discontinued by the NHS are costing £70-80. Instead of reforming the NHS and funding it properly, the future is paying unaffordable amounts for the same treatment.
It is shameful what is happening to the NHS. A plan in the making for a long time. The NHS is great, where would we be without it, but I think as much as it's being destroyed from without by successive governments trying to sell it off, it has also been destroyed from within with restructuring that works for no one and management incompetency. Some of the most brow-beaten whistleblowers are from the NHS - it's the pig that eats it's own young. Inefficiency rules the day, and out of court settlements run to the millions. It needs to be doctor/patient led, not white collar consultant and private profiteer led. At primary care level it needs to be completely reformed to be treating patients as humans and bodies as whole systems. Primary care seems to work to a model of treating people as a conglomeration of spare parts that are independent of each other, and for every ill there is a pharmacological solution that produces a whole new range of problems.
I’m not wanting to belittle your experience at all and yes there are some doctors who are very dismissive. I was wondering though , you know you can’t eat gluten so you avoid it and if you avoid gluten then celiac is under control. Is it that you think there is something else wrong with you ?
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Thank you Angel46, but it is not that simple. I have ongoing complication and my diet is limited to few things at this stage. I am not receiving the proper input on the issue as I do not have coeliac on my medical notes, and I am being shunted from pillar to post. I have osteopenia, osteoarthritis, chronic pain a lot of the time, despite staying on rigid gluten free diet. It is not a case of simply adhering to a gluten free diet, and I strongly suspect my original blood tests were not interpreted properly. I do not receive regular check-ups that coeliac requires, and I am constantly doing battle with GPs and gastros who negate my symptoms and health problems because I do not have that diagnosis on file. Now, it would seem, no one in the past 15 years has even had access to my original coeliac test results so that they can determine whether or not they were properly interpreted. Neither has anyone ever sought them out, and I was led to believe last year that a GP had examined my coeliac test results and determined them to be negative - despite him having no access to them as original practice seems to have 'lost' them. You may view that treatment as fine, but I do not. Nothing will improve for anyone if we continue to accept crap treatment and negation of health problems. I think implying that there is 'something else wrong' plays to the standard medical attitude to coeliac, and the complications that go with it. Coeliac underpins the situation either which way and being shunted around with worsening health when the actual original testing goes missing is not acceptable. I think you have fallen into the trap of thinking if you cut out gluten you will be fine - that is not the case for many, and it's that attitude that makes navigating the complications that go with this all the more challenging.
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I object to the personal message so I have reported it . Who is being aggressive ? I only asked a genuine question.
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I think the issue was one of bullying. I have politely asked you in DM to desist, as I've had issue before. The forum is open to all with coeliac and gluten intolerance/issues. If you have an issue with me sending DM to ask you not to personally attack every time I post, that is your call to 'report'. This has been an ongoing issue, and I have, as I stated in the DM, only been kind when you have posted in the past. I've had a look through your other posts on other forums and it seems this is not the first occassion you have used this forum to attack others (I note a lengthy one in the liver disease group). This is a health related forum, and it's for health related issues. If you have taken personal dislike to those on the forum, it's probably better if you disengage from their posts and don't come in with personal attacks when asked to desist.
Strictly avoiding gluten usually controls major Celiac symptoms, but there is evidence of permanent 'immunological scarring' sciencedaily.com/releases/2...
What exactly are you angry about or suing over? Based on the very little blood work done it seems you would not have celiac. If you wanted the genetic test and biopsy, most GI specialists are happy to perform them. As far your test results from 2004-2007, it is quite common and legal for doctors to not save records that far back. Even the IRS erases your existence if you haven’t worked in 10 years. If you want celiac get a new test; if you don’t want it, don’t have one. Celiac disease is treated by avoiding gluten which no humans should consume in excess. There is no medical negligence here.
I think the author of this post is based in the UK. We have the NHS and a different system here. Medical Records are held for as long as you are a patient in the NHS, and an organisation call Public Health England holds all patient records, even if they move or change doctors practices. In an ideal world, nothing would go amiss, but under the NHS system they shouldn't. Not sure where the original poster has gone as they are now listed as 'hidden' but very common for many to fall at the first hurdle in UK. We have a poor system for understanding symptoms of coeliac, and the blood test, if negative (whether false negative or otherwise) dictates the outcome of what happens next. Unfortunately many believe the blood test to not be the gold-standard that it's deemed to be. You may have a different clinical pathway in the US, but here it's very much negative blood test must mean negative for coeliac. The gene test will tell you if you have the gene or not, but have the gene is no guarantee that you will or have developed coeliac. I've found quite a few on here seem to be in the 'negative blood test, no biopsy' zone, and have adopted the coeliac lifestyle anyway. Once you've done that, biopsy not possible until your reintroduce gluten. What was the testing pathway in your experience? Did you have positive blood test, then biopsy, or do they follow different guidelines?
There is also an allergy to gluten and wheat that is completely separate from celiac. It affects a greater percentage of the populations, and results in higher comorbidities. The allergy involves immediate immune response while celiac is autoimmune. They mimic quite well as they are only off a few immunological response processes. I never tested positive for celiac knowing their tests are a crap shoot and labels are not necessary. My mother tested positive 5 years ago and last month negative. You simply listen to your body, if it harms you avoid it. Tell your doctors you have a gluten allergy which is a very respected condition. Gluten and grains were never meant to be consumed the way they are in modern society. There are many natural ways to help heal the damage done that you will never get from allopathic doctors. They want you sick. Try avoiding lectins, take NAG to help protect and heal your glycocalyx, it is damaged by wheat, gluten, lectins and other toxins in the world. Gut health is critical to overall health and wellness.
I would have to disagree with you on this one. Coeliac, untreated, leads to additional health problems including risk to bone density. It's important, if you have coeliac, to have the diagnosis so that you have regular check-ups and follow-up investigation if symptoms are still there. It just makes life easier in the longrun. Yes all roads lead to Rome and gluten has to be avoided, but there are wider health considerations to consider. When your mum had the positive coeliac test, did she cut gluten out from her diet or carry on eating it?
Yes untreated it will lead to all sorts of horrible things. But as someone who has been nearly killed time and time again by doctors for serious reasons, it’s strikes me to see such a claim. I had to learn to (literally as I am on my way to becoming a physician scientist) to educate and treat myself. One must become their own doctor, nurse, researcher and legal advocate in this world. You have to take your power back from those dark forces in that medical world. And I apologize if getting help is hard there. If I want a bone scan at 36 this test or that, I simply ask for it. If I face resistance I present a logical proposal of why I need it. I guess I’ve learned to bypass the system so to speak. And yes my mother avoided it with the exceptions of our occasional cheats to persevere our sanity. She then consumed it in plenty for 5 months and got retested and there are so markers at all. She did an immune protocol in which she believes healed it. Again, there are treatments that mainstream medicine will deny exist because they want you to develop other conditions. No patients, no pay checks.
Seems we all flounder with the medical world, no matter where we live. I firmly believe all health begins with gut health and so many problems can be linked back to it. What was the immune protocol you mum tried - sounds interesting.
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