My GP has refused to give me a blood test for Coeliac disease even though I filled in the Coeliac society questionnaire and it indicated I should have one. (He also refused to test my TSH before my annual review for my thyroid, I have Hashimoto's). His reason was lack of vials and he also said it would be unlikely that I wouldn't already have been diagnosed with coeliac disease at my age (63) - I don't think this sounds very convincing. I have spent two periods of time (initially 1 year and then 2 years) being completely gluten free. I feel better being gluten free but not dramatically so I would like to find out if I have to avoid gluten completely or if I can occasionally eat it (eg when I eat at a friend's). I know a high percentage of people with Hashimoto's benefit from a GF diet. When I eat gluten it does seem to affect my digestion but I can't see a clear link to any deterioration in my Hashimoto's. I always seem to have high thyroid antibodies whatever. If the effect of eating gluten is delayed in Hashimoto's then it might be hard to identify it, I certainly can't work out what's going on.
If I knew for sure that it is really important for me to avoid every speck of gluten then I would be fine doing that but it is a hassle, I make my own bread etc because I don't like the additives in commercial GF products and it can make life difficult if eating out. I don't want to go to the trouble of being totally GF if I don't have to.
I've bought the over the counter SelfCheck test from Lloyds 'for the detection of anti-tissue transglutimanase IgA antibodies'. I've read that if the test is negative then that is likely to be accurate, if it's positive then it's less accurate and you should get a more accurate test (I think it's an endoscopy). I don't know what the chances of getting my GP to authorise that are.
I haven't taken the test yet but I will in the next couple of days. I've been eating gluten twice a day for about 6 -8 weeks.
Any thoughts?
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"My GP has refused to give me a blood test for Coeliac disease ".
1) Lodge a complaint directly to the practice via their prescribed route. If you search for the practice online it should give you the main practice manager email.
2) Once the inevitable 'we did nothing wrong' outcome happens, if they actually respond to your complaint, forward this on to the Ombudsman for NHS complaints. PALs don't deal with GP practices, only hospitals.
3) Find either a new GP in the same practice, or leave that practice and join a new one.
This is medical abuse of the first order. No one should be denied access to medical testing/input if they suspect an illness. A coeliac blood test is a cheaper option than your having to be treated for more serious illnesses down the line owing to medical neglect.
If no one has tested you for coeliac, how are you supposed to know you have it or don't have it, regardless of your age?
Do not risk your health any more to that GP practice, and do not drop the ball on pulling that GP up to accountability.
As to the 'do it yourself' tests - I've used ones I've bought online, but showed negative results, but the NHS one also showed negative result, but I did cut out gluten and go healthy. I have gene, was never offered biopsy.
If you suspect you have coeliac, get tested properly by a doctor. If you have negative result, ask about a biopsy as lots with negative blood test get positive biopsy.
It is also possible to have non-coeliac gluten intolerance which is every bit as impactful and also recognised by NHS, but apparently not your GP. Lots of threads on here about gluten and thyroid.
Thanks Benjamin123 - I posted this on the Thyroid forum and people have commented that NICE guidelines are that people with Hashimoto's should be tested for Coeliac disease so I shall go back to the GP. Unfortunately my GP surgery has taken over the two other practices in my area so I can't go to a different practice. I can try a different doctor at the practice though.
A different GP will have a different attitude. If they are stating information that contradicts the NICE guidelines, then they are in breach of practice standards and healthcare codes of conduct. GPs know nothing about coeliac. They know nothing about gluten (will prescribe patients with coeliac medicines that contain gluten). They will cover up their lack of knowledge with arrogance and gaslighting. Hope you get sorted.
You are so right Benjamin! I for one had a false negative blood test, but my biopsies came back as positive. I would definitely complain officially about the refusal to help. It’s very important to get diagnosed and then avoid gluten like the plague once you have an official diagnosis (not before, as it’s so difficult having to eat gluten again, if you’ve already stopped it). Good advice.
My thoughts are the same as Benjamin123. Practice Manager - name, GMC number of doctor (you are saying you are holding this doctor accountable), time and date of appointment.
A recent study showed how poor GPs are in knowing about coeliac disease, thinking it affects 1 in 1000 - wrong 1 in 100.
Many of us have suffered for years (decades in lots of case), like Professor Dave Sanders says ‘the numbers are just the tip of the iceberg’ and Professor Marsh (Marsh test named after him, was diagnosed at Marsh Score 4 - villus atrophy for his own coeliac disease diagnosis) ‘we are severely letting people down.’
Good reply. I just see as criminal levels of negligence at this stage. I read a line in a blog post some time ago that really stuck with me - the blogger stated she wondered if there was a pharmaceutical intervention for coeliac, would GPs be more clued up and testing everyone? Currently pharma companies make no money from coeliac, so arguably you could say GPs are only the frontline for pharma companies and the key income generators for pharma companies so focus on what can be medicated for profit. If a pharmaceutical company came up with a vaccine or treatment for coeliac tomorrow, their known market would be tiny, so the pressure would be on GPs to find all their coeliac patients, so they would suddenly be testing everyone and their dog for coeliac, and to the gold standard of biopsies for everyone. I have come to a point of reframing the NHS, or primary care at least, as a money laundering platform and our bodies are what the money is laundered through. The focus will only ever go where the profit can be made, and currently for coeliac that is crap commercial GF foods so the codex ppm level is allowed to remain to make it easier for the manufacturers, and Coeliac UK put their focus on the food side as that's where their profit comes from as well.
I’ve done a few home coeliac tests previously in my journey.
I eventually tested negative for coeliac but positive for wheat allergy igE on a lab blood test. Monitoring my thyroid as well since blood test at GPs showed sub clinical hypothyroid. (I decided to monitor myself because it’s possible to have coeliac and allergy to wheat though rare.)
I think the home tests are pretty accurate regards detecting the antibodies. The only issue with the test for igA ttg is that it may not show positive if igA deficient which a lot coeliacs are compared to rest of the population. But apart from that I think they are a great first step if suspect coeliac. And then you have something to show GP - especially if concerned.
I’ve done a Home coeliac Screen test by the company personal diagnostics (UK, order online). I found their customer service very helpful. The test is for igA and IgG ttg antibodies so takes into account possible igA deficiency. I got a questionable very faint positive at the time and they immediately sent me another test free of charge to check, which showed negative.
I did the test this afternoon and it was negative. I did the SelfCheck test which is just IgA - according to some responses I had on the Thyroid UK forum some people have found it unreliable so I'm not 100% convinced by it but I suppose it's better than it being positive. I'm going back to being gluten free for a while because I have felt worse since eating gluten so I'm pretty sure I have some sort of problem with it.I will then try and eat gluten occasionally and see how I am with that.
I can't face having a battle with my gp over it because I already have constant difficulties with them over my thyroid treatment and that is enough!
From my understanding of the research literature, gluten can cross react with thyroid. So some people with gluten antibodies get those antibodies aiming at the thyroid on a gluten-containing diet. Different antibodies to the specific coeliac ones they look for but related as one autoimmune condition puts at higher risk for others. It’s surprising GP arent more understanding of this. Age isn’t relevant in a sense.
For me personally interestingly it was a routine blood test at GP that showed high TSH (had doubled from the year before) during a gluten challenge last year (previously gluten free for over 10yrs for other health issue). When I went gluten free again I tested three months after with ‘monitor my health’, to check thyroid hormones and returned to normal - not brilliant but normal range. No way of knowing but I think it can’t just be coincidence. I know I have IgG to gluten gliadin from a York labs test. I’m my own guineepig.
If you are eating Gluten with no real side effects there is a possibility that you don't have Coeliac disease. I only have to have a crumb and then a massive flareup and dermatitis hertiformis on top. Usually vomit and feel like death warmed up and left over for quite a while. But if you are concerned you must go back to your doctor and ask again. You could have an intolerance to something you are eating as certain foods we can be sensitive to without Coeliac. But do take that test as it will help. Also ask to see a gastroenterologist as they will be the ones that give you a positive answer. I know colonoscopy are not that pleasant and avoided like the plague but it will confirm you have coeliac or not. A blood test can be performed first to check for antibodies. I found out by having a massive break out of Dermatitis Herpetiformis which some Coeliacs do get. A nasty itchy rash. Not any old rash but a rash to beat rashes at times! Pleas regardless of your age go back to your doctor and ask if you have actually been tested for coeliac as he should have it in his or her notes. I have worked as a medical professional before retiring. I'm coming up to 74. Sometimes you have to 'battle' politely with GP's if they are rather busy and also some think because we are over 60 a lot of problems are superficial or just 'old age'. Bloody cheek! But maybe you have been tested. Ask for a copy of your medical records as you are allowed to have them but you may have to pay a fee. Mine was £10 but that is a few years back and I'm lucky as my doctor is forthcoming and knows my background. She is a very nice doctor too. I do hope you can get some answers.
Raise a complaint with the practice as others have said. If there's one thing I've learned whilst dealing with GP's they really aren't as bright as we think they are. Well, certainly not in my case anyway, in fact there's more brains in a tin of tomato soup than the GP's round at my surgery. My surgery will give you anything you ask for as long as you'll just go away and leave them alone. 😂😂😂Stand up for yourself, try and be assertive without being rude.
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