What Does It Mean To Have Coeliac In UK?

I've been contemplating this after another food issue this week and it seems, under current standards, this is what Coeliac sufferers in UK are faced with:

- Late/non diagnosis. For some it can take decades to have a diagnosis, despite clear and obvious symptoms. Too many have to resort to figuring the issue out for themselves, and then continue to be negated by clinicians;

- Gaslighting by GPs and consultants. Shunted off in every which direction for every which test whilst the obvious condition of coeliac is not tested for or not properly tested for (GP belief that one blood test is the 'gold standard'). Some individuals have been told it's 'all in their mind' and been referred for counselling/put on antidepressants;

- Failure by many GPs to appreciate the need to keep gluten/have gluten in diet for testing;

- Negation of symptoms and failure for GPs and consultants to join the dots - many only see coeliac as a digestive disease, not one that effects neurologically, joints, organs, etc;

- Poor gluten free labelling laws where manufacturers do not have to declare ingredients derived from gluten source or whether product is produced in same factory/production line as gluten;

- Failure by Foods Standards Agency to tackle errant food manufacturers;

- Failure by local authorities to apply law with/penalise food outlets that provide 'gluten free' menus but staff not trained in gluten free procedures/food contains gluten;

- Failure by Ceoliac UK, the dedicated charity for coeliac sufferers in UK, to take onboard and address concerns of coeliac sufferers in all of the above;

- Ongoing denial by CUK/Food Standards Agency/NICE to sit down and properly research the 20ppm codex rule/allowance and negation of the many coeliac sufferers who report issue with this level. This may be a European/International directive, but it is not working for many and nothing to stop UK agencies bucking the trend of accepting this level as a given;

- Failure by Coeliac UK/NICE to ensure GPs are coeliac aware. There is no obvious plan/campaign to tackle this and thousands of people suffer for that. Coeliac UK offset the blame, but they are wholly failing in this. This is the frontline stuff they need to tackle, but don't. We are told, statistically, 1 in 100 have coeliac, but only 10% of people ever get diagnosed. That is criminally insane that this level of medical negliligence if happening and CUK are sitting on their hands and looking the other way/offsetting blame;

- Suspicion that Coeliac UK are more on side of manufacturers than coeliac sufferers for financial gain and happy to turn blind eye to all the products/practices that are keeping coeliacs ill, for fear of losing profit/income;

- No representative voice/body for 'highly sensitive' coeliacs - so those who do not tolerate any ppm of gluten. This is estimated to be 10% of known ceoliacs. This is a high number and these people are left to flounder and suffer for the lack of representation/lobbying for better standards;

- Negations of 'highly sensitive' ceoliacs concerns by CUK, and accounts of individuals being gaslighted into believing they may have additional medical conditions rather than admit the 20ppm codex level is flawed. This then filters down to GP and NHS dietician level as they believe 'gluten free' actually means gluten free - they are ignorant of the codex level, and probably will investigate for other medical conditions. All of this costs NHS and presents risk for coeliac sufferers;

I for one am fed up living with such poor standards. I have been directly impacted by all of the above. Coeliacs should not have to live limited lifestyles on the basis of very well paid people ignoring/negating/gaslighting their illness and medical requirement for better standards and processes. There is possibly few other life-limiting impactful illnesses that recieve such a poor show from the medical profession and associated bodies. This is simply not good enough and too many coeliac sufferers simply accept this as their lot.

What can we do, collectively, to change this situation?

(By way of example of the absurdity of what coeliac suffers in UK suffer, here's a post pictured from FionaGFG (Administrator) "Have you found it hard to get GF meals in hospital?" This is a human rights violation.)

[Grottybotty]

I absolutely agree with you Mise. My gastroenterologist says I should regard myself as coeliac because I have lots of other issues all related to it. I worked it out years ago. I don't however show up as positive on the tests because I've not knowingly eaten gluten for 15 years. However my GP doesn't accept that I can be coeliac without the test and offers me counseling for health anxiety. And won't prescribe me any gf dietary food either.

My gastroenterologist despite being largely supportive is a bit suspicious because I'd worked it out for myself and doesn't think this is really possible!

[Hidden in reply to Grottybotty]

"Health anxiety"! WTF

Astonishing. If it was 100 years ago they would probably just lock you up in an ayslum. As for that GP - get him to follow the threads on here. I had to self-diagnose as neglected by medical profession for proper investigation owing, also, to negative blood test.

I'll give him health anxiety.......

Where do they get off with the arrogance and superiority issues?

Glad you were able to self-diagnose, but unfortunately, as you say, it leaves you out in the wilderness for other health tests/support. Not good enough at all.

[Grottybotty in reply to Grottybotty]

I feel I've only been taken seriously because I have 2 other conditions which heavily implicate coeliac disease: lymphocytic colitis and pancreatic insufficiency. My GP - despite what I've said - is one of the better ones at the practice! I've had lots of support from 2 great NHS dieticians, who are more clued up than both GP and gastroenterologist, but I've also had rubbish dieticians. I've found it all very hard to navigate even though I'm lucky and I've got 2 degrees and read very widely - God help everyone who doesn't feel able to challenge the conventional advice.

My other bugbear is people who lie about gluten containing ingredients in food, especially family who see eating gf as "attention seeking". I don't eat at all with some family members after their cooking has made me I'll, and when challenged they've admitted it contained wheat etc

Best advice I'd give anyone is to be vigilant about what you eat, read and research food labelling and cook as much as possible from scratch.

[Hidden in reply to Grottybotty]

Great you got good NHS dietician. I've only had one NHS dietician appointment and was woeful. Still feel cross about it. Even private dieticians are not aware/versed on cross-contamination prevalence.

There is something entirely bizarre in this space whereby people will target/bully those with 'special' diets, and it's a very strange thing. The notion of attention seeking or faddy lifestyle choice are massively prevalent. It's a medical illness, autoimmune. Why do people have such an issue with that? Yes, I've witnessed people putting GF bread on chopping board covered in normal crumbs, forcing gluten biscuits on people with notion that a little bit will do no harms. It's exhausting. I've even been in café at Tate Modern in London that had big bowl of salad containing pearl barley labelled as gluten free.

It should not be this difficult.

I'm currently chasing company that has labelled a product as gluten free, complete with GF logo and they confirm that they do not even test for gluten. Seen similar post elsewhere today on here that's almost identical of same situation.

CUK are good for the basics/preliminary intro to gluten free life, but they only take it so far and leave it hanging with the ever present issue of the gf foods that make people ill. Standards have been so poor for so long that i think they are filling the gap rather than properly tackling the challenge.

[Aitjk]

I was recently in hospital in Bedfordshire and although there were gf alternatives for the main meals, the corn flakes and toast offered for breakfast were not labelled gf. I contacted the relevant dietary manager whose email address was on the menu. He replied quickly and ordered specifically gluten free cornflakes and rolls for me for the next morning. If patients approach in a polite and informed way, I am sure there would be more attention paid to the situation in hospital.

I had suffered for a couple of years and decided to go gluten free, which solved most of my issues. Because of this the blood tests did not show any reaction and I refused to go back onto gluten for the required six weeks and suffer for another blood test. My mother had developed coeliac disease at my present age, so I will pay whatever the cost to stay well. There is a lot of choice nowadays, so monitor your own reactions to decide if things are suitable or not. It has also inspired me to cook more of my own again.

[Hidden in reply to Aitjk]

That's good that someone took your situation positively at the hospital, and could respond. It is the lack of diagnosis that will impact at hospital level as well. And yes, it is a case of having to take your own health/diagnosis/treatment into your own hands, whilst tolerating an awful lot of ignomy along the way from disbelieving medical professions. There is a lot more choise nowadays, but I am one of the number who can not eat gluten free food, so the choice is growing in the main, but no provision for the 0ppm folk. I just walk past the Freefrom ailse in the supermarkets these day. I find some foods not labelled GF are fine for me (e.g. humous) but anything with GF label makes me ill. Oh, the irony.....Does your GP at least take you seriously, or do you not even bother having the conversation?

[Aitjk in reply to Hidden]

Because I refused to go back on gluten for a further blood test he took me seriously and has prescribed calcium with added Vit d supplements for me to support my system. He sympathised but without the extra test is unable to supply items on prescription, so accepts my family history probably suggests I am at the minimum gluten intolerant. I am fine with things as they are. Hope you get positive results from the profession soon.

[Hidden in reply to Aitjk]

Thank you. Good you've found a workable middle-ground. Good luck.

[Whydothis]

Most of the above!

I was lucky with my diagnosis - I had no idea that all the various ways I was feeling under the weather were related to each other, and symptoms of CD. I went to my GP about one of them and was referred for colonoscopy with suspected bowel cancer. Luckily the blood tests done to give the consultant more info included a test for CD, and I was told within 24 hours of having the blood taken that it looked as though I was coeliac, rather than having cancer. I was correctly advised to keep eating gluten, and the biopsy was done at the same time as the colonoscopy, so no problems there, and no problems with your first three points.

Downhill from there!

No advice - only saw the cancer consultant, who knew less than I did (after my first 3 weeks of research). Just told me to go gluten free. Not even a mention of CUK.

No further contact from GP - no offer of further testing for any deficiencies, no dietician, nothing. No advice to avoid oats to begin with. A friend advised me to join CUK, and to be fair to them, their fact sheets got me started on my research. GF diet, including oats and shop-bought bread, made me feel better so thought that was it. Quite confident that I had got it sorted.

8 months later, (a year ago) I was chatting to a GP from another area at a party, explained why I was not eating, and was asked how my 6 month check-up went - that was the first I had heard about any follow up. I than requested, and had, another blood test. It came back with a lower but still positive result, which was reported to me - but no suggestion of talking to the doctor. I became more wary about eating out, as I was confident about my own kitchen and cooking, and requested a further blood test in January this year. Still high, so asked to see a dietician. She convinced me that I was still getting cross contamination, and just needed to be more careful. I asked about oats, and this was pooh- pooed. So I decided not to ever eat anything I hadn't cooked myself (and Covid made this inevitable!). Giving up so-called GF food gave me an improvement in how I felt - so I now consider myself a highly sensitive case.

Requested yet another test in June - spoke to receptionist on the phone for the result, and was told that the doctor said it was ok, no action needed. I had to demand to know the actual result, which she gave me, and it is still too high - so whichever GP that was knows nothing. I then stopped eating oats, and feel much better in several ways - so I had wasted 18 months of recovery time due to lack of information.

That rant was a long winded way of saying that NHS staff know little about CD, and that our care is not up to scratch at any level.

I agree with all your points about food labelling and food standards, codex, CUK and their failures to address the problems, and NICE. Yes, it must be medical negligence.

I don't know whether it is NICE or another body who is responsible, but the variation across the country in what is available is terrible - some areas have clear guidance about follow ups, bone scans, and prescriptions (not that the food on prescription is safe!). I had no advice, no follow up appointments, no offer of bone scan, and there are no prescriptions at all here. I feel I don't matter at all!

On the question of hospital food - I am terrified of having to go into hospital for any reason! Just visiting my local hospital is a nightmare - all their restaurant can ever offer me is a jacket potato with butter (and their staff don't even know what I am talking about)

If my GP had known more about CD, and had asked me more questions, I now realise the diagnosis would have been obvious.

If the practice knew anything about CD, I would not have been told that this latest blood test was ok

If the dietician knew what she was talking about, I would have identified the danger in GF food and in oats much sooner.

All this means that neither the NHS nor CUK are doing what we need.

From the NHS point of view, if the illness does not need drugs or an operation, it might as well not exist - it is purely for the patient to sort out. Any problems mean we are "non compliant"

The question is, what can we do about it?

[Hidden in reply to Whydothis]

Hi. I think you have articulated the problem so well. The diagnosis, as the first hurdle many stumble on, is only the beginning of the 'journey'. I've read somewhere (not sure how true) that only 8% of diagnosed coeliacs acheive full recovery (with GF diet) due to the cross contamination and codex level, as well as improper advice on how to repair the damage. I think it is astonishing that such poor NHS advice/knowledge. It's 1 in 100, but some obscure 1 in a million. Coeliac UK did their own research at a GPs conference and majority of GPs believed it was 1 in 10,000 for coeliac. Is no one teaching these people at medical school?! Regarding oats, yes best avoided. Regard corn/maize, from what I read it may be as bad but just not researched enough. GF foods are, in my mind/experience, a total con.

[Rhyothemis]

I'm in the US and it is sad to see the UK has a lot of the same issues as the US. I hope you find a way to get the needed changes.

I wrote a bit about my daughter's horrible experience with diagnosis/ hospitalization here:

celiac.com/articles.html/na...

[Hidden in reply to Rhyothemis]

That's a pretty grim read. Thank you for sharing this.

[Cooper27]

I've heard that GPs are going to be getting tablets to help with diagnosis soon - coeliac UK are going to be introducing an app as part of it to prompt GPs to test for coeliac disease, so hopefully rates of diagnosis will increase off the back of it. Presuming GPs use it that is.

I think it was under trial last year in a couple of surgeries, have no idea if it was a success or not.

[Hidden in reply to Cooper27]

Excellent. That's good it that takes off. I suppose GPs are overwhelmed busy, so I am harsh on them, but anything to improve diagnosis rates is a benefit. The think with coeliac/gluten issues is that they do seem to underpin so many other auto immune diseases, so being able to target more potential cases will benefit across the board. I've read on here that arthritis/joint pain is not recognised in UK as symptom/side effect of coeliac. It would be great if Arthritis UK could join the dots of this also. I've written to them recently to ask if they have done any research around coeliac/arthritis, still waiting response.

[Cooper27 in reply to Hidden]

Half the time I wonder if it just doesn't occur to GPs to test, so anything to help prompt them will be great

I just hope the app picks up on obscure cases, like those who only present with anemia but no major other symptoms

[Hidden in reply to Cooper27]

True. App is step in right direction, but some will no doubt still go under the radar.

[Whydothis in reply to Hidden]

Yes - one of my symptoms was painful knees, and my GP had agreed with me that this was arthritis. I had all but given up walking any distance. Now I am back to 14 miles on a Sunday with no problems - it was just one of my gluten symptoms. I asked CUK why they do not mention joint pain in their list of symptoms, as some other countries do, and they said this is because NICE do not recognise it as a symptom.

[Hidden in reply to Whydothis]

Crazy. Why ignore such a significant and common issue? Makes absolutely no sense. Interesting to see what Arthritus UK come back with, if anything. Great you're doing 14 miles - that's some mean level walking!

[Whydothis in reply to Hidden]

I will be interested to read about how they respond. It seems crazy to me, too that they don't recognise joint pain as a coeliac issue. The US does, and I think other places, so it is not just our imagination!

[Hidden]

Unfortunately the UK charity takes funding from the prescription food co's so I understand your concerns.

I think it's wrong that we have such varying world standards especially as we have have the largest coeliac charity in the world.

I avoid the cross grain symbol on UK food and won't risk eating out as I don't see how eateries can keep coeliac like me safe when they are told that food with allowed levels of gluten are gluten free.

To me their policies are financially orientated and cause divisions with coeliac instead of uniting us and I resent them and they ethos!

You take care Hidden and remember if its got gluten init it isn't gluten free full stop!

Jerry.

[Hidden in reply to Hidden]

Very true Jerry. Just a shame that a you're expected to live such a limited lifestyle and miss out on the social joys of eating out. It's ain't fair!