Is coeliac disease a disability - Gluten Free Guerr...

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Is coeliac disease a disability

Tizer1234 profile image

Hi

Is there anyone claiming disability or pension tax credit in respect of coeliac disease. I have worked and paid my dues since leaving school aged 15 years. I have never been unemployed or claimed any benefits of any kind, so please take no notice of my ignorance if this is a silly question.

Tizer.

23 Replies

I think it depends on how it impacts you, and whether it's managed by a gluten free diet, or whether you have secondary issues?

I met some who were undiagnosed for so long, they have mobility issues (although I think the mobility issues are what they classify as the disability), and others have absolutely no impact, apart from the restaurants they can eat in.

Hi Tizer,

I think it would be quite unusual to find someone who is in receipt of a UK disability benefit due to Coeliac Disease alone.

As Cooper points out, it is the impact a condition has on your health rather than the actual disease, that qualifies you for a particular benefit such as PIP (Personal Independence Payments). Most people with Coeliac Disease would fail to meet the rigorous qualifying criteria, unless they had additional more severe disability issues.

However I believe that Coeliac Disease does count as a disability [which is one of the protected characteristics] under the Equality Act 2010 - and means that an employer or other body has to make reasonable adjustments to accommodate your needs. Happily I can report that my own employer does this - i.e. they work with me to ensure that my exposure to gluten containing work spaces is kept to an absolute minimum.

I’ve also been to events where there’s been a free catered lunch for all delegates and the organisers have fulfilled their obligation to provide a ‘reasonable’ suitable gluten free alternative for me (although you usually have to discuss this with them in advance…!).

I hope this helps.

Hi there Tizer1234 yes coeliac disease is a disability but it’s not a chronic disability especially as the remedy is a life long gluten free diet.

In the U.K. coeliac in some areas can get food on prescription and your GP gets extra money for coeliac patients which’s one good reason to be diagnosed.

But like Cooper says it depends if you or the coeliac has other disabilities, so good luck and do let us know how this pans out.

I've checked around for this one in the past, in respect of work. If your employer is expecting you to travel in work, and stay overnight in locations that have no safe coeliac options, what's the law say on that? Unfortunately I could find nothing that clarified it, and for the things I did see, it did not seem be that coeliac is viewed as a disability. The standard definition for disability for UK employment law is from the Equality Act. The main definition is:

"A person is disabled if they have ‘a physical or mental impairment’ which has ‘a substantial and long-term adverse effect’ on their ‘ability to carry out normal day-to-day activities’." Because coeliac is so poorly recognised, diagnosed and advocated for in the UK, we just don't get the recognition that it can and does fit with the definiton of the Equality Act. Perhaps contacting Coeliac UK would be helpful in terms of understanding why it is not currently considered a disability, and then challenge them on 'why not?'.

If you Google "Equality Impact Assessment Following the consultation 'Availability of Gluten Free Food on Prescription in Primary Care'" - it states the following "Coeliac disease is not defined as a disability under the Equality Act 2010 although it is a long term condition. It is an autoimmune disease which requires an adjustment to the diet to prevent symptoms." This is a document from a government consultation, so this is the actual government's take on coeliac. In my own experience, and I'm sure for most/all on here - it is not as simple as "an adjustment to the diet", and I have found it's an adjustment to an entire life including avoiding all foods that have come from production facilities that process gluten, avoiding work trips, holidays, socialising, staying in other people's homes, and generally living in a hermetically sealed bubble at all times to minimise/reduce risks. It is also not just diet - it is the medicines we use, the toiletries, not licking bloody envelopes or stamps, etc, etc.). They simply don't get it, and the reason they don't get it is because f'ing Ceoliac UK is about as much use and impact as a chocolate teapot.

From my own point of view I gave up my last job (for a variety of reasons) and it involved so much travel and I was being made ill all the time by hotels and trying to scout around for meal options. I didn't even bother getting in a wrangle with the employer as I thought they are just not actually going to get or understand the issue here. In previous job we had staff away day where no dietary provision made for me and I was told I would have to just eat the same pizzas as everyone else. I have been to conferences and ticked the gluten-free/coeliac dietary requirement, and double-checked in advance, to arrive and no provision made and I've had to run out and try to find somewhere for lunch (quite a gamble) and was expected to be ok with that.

We do, by the very definition of 'disability' meet the definition, but those who decide whether or not we actually have a 'disability' (i.e. those who do not have coeliac or any proper knowledge of it) have descided, via magical thinking, that because coeliac can be treated with a 'gluten free' diet that it's all hunky dory and problem solved. Again, if we had a proper charity/lobby group advocating for coeliac it would probably be recognised under disability law, but unfortunately we don't so for the meantime it is a case of put up, shut up and suffer in silence.

Hi Tizer1234,It’s a great question - not silly at all. Usually autoimmune diseases come in pairs, such as thyroid, Sjorgen’s, pernicious anaemia (b12 deficiency) to name a few. So, it depends on how that impacts on daily living activities.

As Cooper27 said, some of us are undiagnosed for so long, such as osteoporosis and other secondary issues occur.

Recently, my leg tremors came back, with ataxia (like a drunk) walk. I trawled my symptoms and food diary trying to work it out. I’d started eating coconut yoghurt again. The bacteria in it, re-triggered my Small Intestinal Bacterial Overgrowth (which we are more at risk of). I’m back on antibiotics, walking pretty normally but still feeling like I’ve got a mild dose of flu.

🐳😊

Wow, SIBO is causing ataxia? So, do you avoid probiotics generally, or is it certain ones that kick off SIBO? So your ataxia had nothing to do with gluten?

No it’s not gluten ataxia - it’s because I had untreated SIBO making me extremely deficient in B12 and vitamin E (amongst other minerals and vitamins) which are linked to ataxia. It confused the fun filled lollipop of a neurologist when I was rushed in in December as it’s not on my notes (under investigation for coeliac disease). So, did not have a full panel of bloods. Every time, I wanted to say something, I was interrupted by the male doctors.

When I saw the private female GP, I was asked me how long I’d been like this, 2 and 1/2 months. Has your NHS GP seen you, Oh yes, not bothered. Just more B12 injections.

The concern was whether I’d had a stroke or bleed on the brain - I had central vertigo and an eye tremor (so the back of the brain is involved).

The calcium infusion I had made no sense but whilst in, read a BMJ article ‘The neurological complications of coeliac disease’, so started supplements and an appointment with a private dietician to check dosages. This is not something I advocate without input from a health professional. Within 7 weeks I could sit up, stand and walk normally for a couple hours a day, then fatigue, pain kicked in.

I did a part time Uni course in Neurological disorders of the brain as well as researched like hell, stuff on here, medical, functional. When I had follow up with the NHS neurologist, in April, I did take my private referral letters (where they regard me as having coeliac disease and it stated what I used to do for a living). They looked at me, gulped and congratulated me for working it out myself. We discussed vitamin E and I asked him how they were coping with the pandemic.

I’m a qualified health professional and half of my family are medical. I don’t practice any more and it’s nothing to do with gastro/neuro.

But there is a joke of ‘What’s the difference between a Rottweiler and a midwife ?’ The lipstick !! (We are renowned for being bossy). 😂

I’ve a running commentary of my life, 12.29 Ate 20 g of melon

12.31 sneezing ++. 🤣

You can see patterns emerge.

They just don't get it really, and I love the fact that the male doctors insisted on talking over the top of you - how delightful. In terms of the SIBO, as per original question, do you find it best to avoid probiotics in general? Also, did you have a formal SIBO test before having the anti-biotics subscribed. Seems everyone with coeliac should be having a regular SIBO test if it's so impactful.

Yes, I avoid probiotics- thanks to the functional nutritionist. Dietician had advised oops. Ha - bought the SIBO test on web. Exploded, so, no definitive diagnosis. I rang the company they said they’d be in contact. Three weeks later, still nothing. I rang my private health insurance - you aren’t covered for pre-existing conditions. Wrote to my NHS GP, it’s IBS you are just being anxious !!!

So, treated self with Berberine and oregano oil (herbal antibiotics- recommended by healthunlocked). Decided enough was enough as excruciating pain where small & large intestine meet. Histamine diet helps - thank you. Back to see a private gastroenterologist colonoscopy and gut transit test. Prokinetic prescribed because MMC (migrating motor complex) involvement is affected if a patient shows neurological symptoms.

I handed over World Gastroenterology article

pubmed.ncbi.nlm.nih.gov/248...

Plus graphic photos of my body’s response. They said they mainly use rifaximin (antibiotic) with their liver patients not gastro. I drop a family member’s job title (not something I do) but enough was enough. The gastro looks at me, goes through my NHS notes on the computer and is far from impressed with their care towards me.

I totally agree with you all coeliacs should have SIBO test. Medicine is a rule of exclusion. So, if someone isn’t responding to a gluten free diet then something else is going on.

As I responded to herbal antibiotics, I’m treated very different privately and that is the key for me. So, despite only coeliac by blood test (I need 18 months of health before I can put myself through a gluten challenge) and only SIBO by nutritional deficiencies, symptoms and response. The clinical picture for diagnosis privately is enough for antibiotics. Worth paying for. 😊

You are good that you have personal knowledge of healthcare and an ability to do a lot of your own research. The more I look into gut health it's just crazy to say to coeliacs that swapping normal bread/pasta/cakes for their gluten free counterparts is how you regain your health. It's just a way to prolong the bad health and ease into worse health. It needs a mega over-haul for at least 12 months. If I was to devise a protocol - gluten out, all non-gluten grains out, all processed foods out, sugar out, no alcohol, appropriate herbal supplements to kill off yeast overgrowth, test for SIBO, test for H-Pylori - give antibiotics if needed, take approrpriate good quality supplements to make up shortfall and stay on that protocolfor a good 12 months. The issue with coeliac is that it comes with a 'mourning' period of all the things you have to give up, so it's natural to err to the hope that is gluten free foods and believe that is the answer. We need to be more realistic with ourselves, but we also need gastros to understand how the gut works. IBS - and this is the hill I am willing to die on - is a made up condition invented by doctors who haven't got a clue how gut/diet works, and invented something that covers everthing in their books, including stress, and pharmaceutical companies can peddle nonsense solutions for. It is a myth, and any symptoms that meet the notion of IBS are the symptoms of an actual condition/issue that needs proper diagnosis. You keep onwards and upwards with what you are doing, and I think we are all learning from your posts.

I love your posts and yes, you have hit the nail on the head with that protocol. I wish NICE guidelines (National Institute of Clinical Excellence in the UK - sorry people reading this abroad) would adopt it but all trusts have different policies and procedures, it’s a postcode (ZIP code) lottery for the care we receive. So, that can be frustrating for people.

I knew nothing about Codex (but do thanks now thanks to you and others).

IBS and other conditions (fibromyalgia, functional neurological disorder to name a couple more) are ‘erm we don’t quite know’. but we will give it a name and see if it responds to these drugs. 🤷‍♀️

Yes, fibromyaligia is the other go-to!

Cooper27 profile image
Cooper27 in reply to Benjamin123

I think we are a bit similar on our thinking on IBS. It's my opinion IBS is a symptom, not a diagnosis. It's like diagnosing "back pain" and stopping there (I've received a few "blanket diagnoses" over the years, that I later realised were just the latin word for the symptom I had described given back to me).

I don't think most doctors realise that that's what they're doing, so I'm not saying it's malicious! It just feels a little bit lacking really.

Benjamin123 profile image
Benjamin123 in reply to Cooper27

That's downright naughty giving the notion of knowledge by just translating something to latin so to 'wow' you with their knowledge and get rid of you.

Cooper27 profile image
Cooper27 in reply to Benjamin123

Dyspepsia was my favourite one, I looked it up afterwards and it just basically means stomach pain located above the navel 😆 but I did get some pills away with me at least.

Benjamin123 profile image
Benjamin123 in reply to Cooper27

Magic pills for every unicorn ill.

Cooper27 profile image
Cooper27 in reply to Narwhal10

My partner had awful restless leg syndrome before he was diagnosed coeliac. I think I read it can be a symptom of some nutrient deficiencies (B12 and magnesium come to mind, but I'm not 100% sure), and it made a lot of sense because his gut would have been in such poor condition, he'd have been short of all of them! It basically disappeared when he removed gluten from his diet. I dunno if you've ever looked at it as a possible side-link for the tremors?

rls.org/understanding-rls/faq

Narwhal10 profile image
Narwhal10 in reply to Cooper27

Thanks Cooper,Great that it worked for your partner. You are correct. Magnesium is muscle action, can be used for seizures and B12 (which needs folate, ferritin, the other B’s.) is an eye opener.

Sorry, I don’t have RLS, I have a high frequency, orthostatic (so, on standing tremor.) it used to be immediate but now 4 hours or so. There’s also different types of walks, the way a person with Parkinson’s (hunched, shuffling). B12 deficient- our legs splay to the side. It’s weird, wonderful and find fascinating. 😊

Cooper27 profile image
Cooper27 in reply to Narwhal10

Ah, sorry, I had thought the tremor might be in a similar ball house as RLS, I think my brain is a bit mushy this week. I hope you can find a reason for it, it does sound frustrating.

It is amazing how all these things can impact us in ways we don't realise :)

Narwhal10 profile image
Narwhal10 in reply to Cooper27

Gosh, - you were trying to be helpful. I’m grateful you took the time to reply and just because it’s not applicable to me. It may be to others reading this. That is so important !! Best wishes

😀

Well I have not posted on.your site before as use the Ataxia UK site.You guys have touched on neurological problems and I have cerebellar Ataxia (caused by gluten but not officially diagnosed yet, won't hold my breath too long)

The neurologists and doctors I've seen have not known what it is to the point of negligence!!!!

and one had a coeliac daughter too.

Since knowing about gluten and the impact it can have have done lots of research, read papers and resorted to seeing an experienced nutritional therapist in this area.

I am waiting still for results of tests done at the London Ataxia clinic but this could be months yet. Next appointment is November so good job I am not eating gluten while waiting!

Dairy and rice have also tested positive as cross reactive foods so my diet is very limited.

Could go on but it makes me so angry that all the while we are ingesting these problem foodsthen irreversible damage may be being done. So don't wait for the HP, we owe it to ourselves to do the research and follow our gut instinct. It makes me upset that ataxia patients might be never diagnosed and if they are then it could be too late, they will alredy be in a wheelchair.

MORE SHOULD BE DONE!!!!!

Narwhal10 profile image
Narwhal10 in reply to penelope2

Hi Penelope2,Welcome here. I sometimes drop in to the ataxia UK part. Oh my goodness,

you have hit the nail on the head. More should be done, it is an outrage. We have to become researchers and advocates for ourselves. Plus live with illness. The official diagnosis is a bit of a holy grail with professionals and I’ve noted that some hubs can be a tad inclusive. Well, you aren’t diagnosed so you shouldn’t be here kind of attitude. Not aimed at me, I’m too elusive - but people are suffering, desperate for answers and signposting to manage debilitating symptoms. Plus, hoping that they don’t progress to permanent disability.

People don’t understand ataxia. Especially gluten ataxia. A woman from the States posted several months ago who was pretty certain she had it from linking symptoms to her food diary. They were seeing a gastro, a nutritionist and a neurologist and none of them had heard of gluten ataxia. I signposted Sheffield Ataxia and Prof Marios’ work and at least she had proper evidence that it was a medical condition with experts in the field.

I do empathise with the limited diet, I’ve always been a weirdo with food. I also had my hair analysed - pages and threw up things I’ve always hated, turn my nose up at. I’m on 1 meal a day - not through choice but fortunately, I can drink a beef isolate shake (tastes wonderful - not).

Wishing you the best

It generally isn’t unless it failed to be diagnosed and serious issues resulted.

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