Several months ago my daughter told me that she was getting a bit concerned about my memory. So, I expect she'd been worried for quite some time before that. I'd also been concerned for quite a while.
I've also had numb fingers for a couple of years at least. Not classic neuropathy because they are not painful - just a bit numb. I drop things quite regularly.
Has anybody had any experience in this area and was there any testing recommended, especially after Coeliac diagnosis as opposed to before diagnosis?
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nellie237
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Have you been tested for B12 deficiency? It would explain both symptoms you've described.
I had terrible cognitive function, and caught myself doing silly things that someone with early dementia might do. I became scared to speak for what might come out and I was only 28 at the time. My issues turned out to be a B12 deficiency.
You can test for this at home if you wish, via a finger prick test. Test kits are available via the likes of Thriva, medichecks or similar.
I forgot to add, I would also often suffer numb hands and/or pins and needles.
Thank you both for answering Narwal10 and Cooper27, I'm glad I asked, this is reassuring.
Its a bit more than walked into a room and forgot why I was there, and simple maths is so, so complicated - Had the blood drawn Friday - so fingers well and truly crossed that's the answer.
I took out 2 home insurance policies. Completely forgot I'd taken one out, so took another one out... Then realised come renewal. So I totally sympathise with how worrisome it can be.
Hi Nellie,I have b12 injections and I forget words, how to pronounce them what letters look like and hand pain. I’m not saying it’s definitely the case for you as blowing in the wind said maybe it’s carpal tunnel.
It’s always a good idea to get copies of your blood results as opposed to being told they are ‘normal’. 😊
I remember hearing a while ago about rationing of B12 injections. I believe the NHS widened the gap from bi-monthly to quarterly? and people are really suffering because of it.
I think that the ranges have probably widened too. I expect the explanation for that would be that the testing has improved/different labs etc. Likely the real reason is sales spiel from pharma companies with a cheaper 'more efficient' product, and cost-cutting.
My daughter now 33 has type 1 diabetes since age 10. I have learned over the years that when you are most unwell and vulnerable that you need somebody with you to ensure that your treatment is not detrimental. Eg. On admission to A&E with high blood sugars and high ketones....so, dehydrated and needing urgent intravenous fluids....a male nurse refused water until she'd seen a Dr. Me:- Please go right now and ask, but he walked out of the cubicle in the opposite direction. Me:- Walked directly to the desk with a very brief explanation and got some water. At other times I've had to scream at unwilling nurses on wards ("but I've been given instructions by the Consultant") that the insulin infusion has done it's job and needs to be removed immediately before she crashes into a coma.
Do you have anybody who can help push the Doctors a bit? I think it can help.
Hi Nellie,I’m so sorry to hear about your daughter’s poor treatment. Good job you are there to advocate for her. There has been some rationing of B12 but I’m quite fortunate.
Regarding your fingers, it is worth checking with GP about possible carpal tunnel syndrome, uncomfortable problem but very easy rectified - I had both mine done, under local anaesthetic and as the doctor released my carpal tunnel I felt the feeling go back into the fingers. It was pretty awesome.
I can see why you say it was awesome. I had the nerve conduction test quite a few years ago and it was OK. I can wring a dish-cloth dry - so no problem with grip, but if it doesn't get better in a few months I will ask for another test, because things do change, and since the test I have had times when I've had to place my hands very carefully at night because they hurt - most of the time there isn't any pain at all.
Sensible to ask for another test if it doesn't get any better; of course everything is difficult with covid, routine appointments aren't happening. Take care, I hope they sort it soon
Hi Nellie237. Yes, I struggled a lot with finger dexterity until went gluten-free. Still find my hands don't work like they use to. I've had nerve conduction test which didn't show up any issues. I have wonky shoulders from too many years at keyboards, and that can also effect nerve issues in hands, so physio might be good route. Coeliac can also cause brain fog, as can overgrowth of bad bacteria and gut candida. Lack of iron, minerals, vitamins also contribute to the issue. Always good to get yourself checked out at GP level, but also a good functional practitioner, e.g. qualified functional dietician may be able to help. I'm getting a bit religious about this advice now - but have a SIBO test done to check for bacterial overgrowth.
Hi Mise, I also have a right shoulder problem. Once I get the latest blood tests back I will book an appointment with MSK. Muscular Skeletal 'clinicians' triage Orthopaedics/Physio in my area - GP not allowed to refer. Before Covid you could get one appointment to see a physio, and then they would send you email instructions - nil follow up. One of my friends in her mid 50's broke her hip in Dec 2018. It was the 2nd break for that hip (she'd had crohn's since young) and she had to wait until August 2019 for the op. Her Consultant booked physio for her and wanted to see her again in Dec 2019 - he apparently went nuts when he found out what they expected her to do without supervision.
I believe that NHS physio is being phased out. I looked at booking an MSK appointment through the surgery e-consult which informed me that Shoulder Physio may not be available in my area.
It is a very long wait for physio. Interesting (?) I also have right should issue. Took years of NHS and private physio to find one who diagnosed scoliosis. At least with physio private appointments, they are variable in price and if you find a good one privately, they can work wonders. I agree that it's becoming challenge to get NHS referrals and different CCGs seem to differ. Such a shame as a good physio can do a power of good. I hope you get there in the end. I've been looking at vagus nerve recently as a possible joining-of-the-dots. Worth checking that out as well just for anecdotal information - it effects a lot of things including digestion. If it gets out of whack it can effect posture and cause digestive issues.
It could be B12 or folate, but also several other options. Datis Kharrazian's book 'Why Isn't My Brain Working?' was the only thing on my Christmas list - it is a serious tome at 400+ pages plus references, but oh boy, I wish I'd had it sooner. (You might find the numbness is Small Fibre Neuropathy - a decent neuro should send you for testing - which again can have several causes. B12/folate and even quite mild blood sugar dysregulation are the more commonly missed ones, and both can affect brain health, as can gluten of course). Best wishes. (PS love your profile pic.)
These books are fab, but can you imagine approaching your GP and stating 'I think I have small fibre neuropathy'?! It would blow their minds. I think standard medicine is flumoxed by a lot. Books like this are good but self-diagnosing will probably have to lead to self-care as well as we are still mired in the blanket diagnosis of 1) gut issue - IBS; 2) nuerological issues - NFI (no f'ing idea); 3) memory issues - dementia or depression 4) none of the above - come back in 6 months (i.e. if you haven't died by then, then clearly nothing too serious).
Actually it was conventional and nothing to do with the book in this case, but I get your point! I'd been referred to my third rheumatologist when I started to get increased numbness ( I've had some for 20 years) and he sent me to neuro who tested and found it a year ago. My GP had heard of it, at least. It seems that I've had it for the 20 years, but it wasn't so easy to see then (isn't easy, even now!). I've been trying to get professional help for years and continue to try but decided to see if there was anything I could do to help myself too, with some considerable benefit to me. Ditching gluten was a revelation!
Clearly I underestimated GP knowledge! So, was the numbness all down to coeliac, and did it resolve, and did they draw the link between the nerve issues and coeliac/gluten, or did you figure that one out? Sorry, a lot of questions, but I'm always curious as to the convoluted and varying routes everyone has to take before they figure out the gluten issue.
Definitely convoluted and varying and I'm still very much a work in progress! I quit gluten after starting to get reflux issues in 2017 and not being able to tolerate medication. I'd had acne for 40 years and it went, just like that. I was shocked, pleased and a bit miffed! Didn't completely resolve the reflux so I ditched dairy too and found that having not been able to breathe properly through my nose my whole life, I now could - easily. So I did a lot of reading! The old numbness and nerve issues haven't changed. The new numbness reduced a bit when I started low dose methylfolate but I still have all the typical and increasing neuropathy. Multiple autoimmune and fibro so hard to know what is affecting what. Brain fog vastly improved with diet, lifestyle and vitamins and minerals, and no longer walking into doorframes etc since taking more B12 and folate. Done some testing for myself when I could afford it, all very interesting, but some more useful than others to help see bigger picture. Don't know if I'm Coeliac as came off before testing (no reason to think of it and never suggested to me) and no way I would go back on for testing, so only way now would be genetic and don't really have the money to spend to prove a point as won't be going back on either way (completely grain free as react to corn especially.) I suspect that, like most, the gluten damage was making it very hard for me to absorb nutrients so had got much too low. I did a basic genetic test and some functional stuff and looked hard at family history - very useful clues. We have a family folate cycle problem, so the B12 and folate is a big part of it for me, but I suspect that the genetic weakness would never have triggered had it not been for the gluten/dairy. Hope that helps!
Mostly GI from memory - bloating, wind, nausea, stomach leaping around as if I'd swallowed a frog, also headaches, rashes, tingly skin/lips.......the main problem was finding supplements that don't include it as corn is in rather a lot. Fortunately Micki Rose (Pure Health Clinic) produces a list to give you somewhere to begin for those that are what she calls TGF (truly grain free) like me. I haven't tried to replace it - I don't eat anything with any kind of flour, no additives, cook all my own from scratch. Lots of veg, some fruit, eggs, nuts, fish, good oils. Best wishes x
Thank you for your insights. I too have found the need to cook from scratch. I am back to square one (similar collection of symptoms to yours) if I don’t. I will fine tune by checking out Micki Rose’s list. Thanks again.
My pleasure. Here is a link to Micki's TGF page in case you want it purehealthclinic.co.uk/trul.... Her site is great and has helped me a lot over the last few years, and I also have both her Gluten Plan book (massive!) and her healing from chronic illness one. (No incentive here - just think credit should go to those who work so hard to show us alternatives.) The list I use is called the Master List - you'll see a link at the bottom. Best of luck to you x
I find a lot of doctors get very dismissive of you if you go on with half an idea of what's wrong with you.
I was asked if I have any skin conditions recently, and mentioned a dermatitis on my shins that I think might be dermatitis hepetiformis. The doctor cut me off before I could explain, to give me a 5 min lecture on why I'm wrong, I can't possibly have DH, and I shouldn't be self diagnosing or telling anyone I have DH without proof. Not a single question on why I thought it could be DH, they wouldn't even let me get a word in edge-ways to explain that I actually know what DH is!
I usually go in and play a bit dumb with doctors because of this sort of thing...
It gets worse, but the worst of all was that it was a private appointment. I made a complaint about the overall experience, but still had to pay for this terrible attitude 🙄
We stopped at a McD's. I'm not keen on ketchup...ate a couple of chips and said to my daughter K "Don't eat the chips they're not right"
K. They're alright, as she dipped another into the ketchup
Me Now try without the ketchup
K Urgh, splutter, splutter that is digusting
However many hours/maybe days later K was in hospital. We insisted that it was food poisoning. The Gastroenterologist insisted that symptoms dictated that it could not possibly be food poisoning and wanted to do all sorts of invasive testing. Oooh, he had egg all over his face when the stool sample came back Campylobacter. I was OK.
A few years later I picked it up somewhere and went to the GP
Me : I've got Campylobacter, and have brought a sample with me.
GP: No you haven't got food poisoning
Me: Yes I have, I've smelt it before - its very distinctive
GP: I'll give you some anti-biotics, but I'm sure that's not what it is
Hello bookish, I'm kind of expecting that my vit/bone bloods will probably come back a slither within range, so I already know that I am going to ask for a printout. I was folate deficient for a while a few years ago, but I think that I only found out at annual thyroid test.
Hi, always a good idea to get copies of results, I agree. I've learned a lot that way, and in range doesn't mean optimal in any shape or form. Just looking at your profile and seeing Hashis, you might also like to look at Datis Kharrazian's other book, 'Why Do I Still Have Thyroid Symptoms'. Great pity that no-one thought to check you for Coeliac then, as they go together so often (like all autoimmune conditions). Using an anti-inflammatory diet may help a lot, certainly slowed everything down for me, but doesn't work for everyone. Glad to see your daughter is getting tested too. Incidentally seems to be an increased prevalence of shoulder issues with autoimmune conditions - regularly crops up with Hashis, Sjogrens etc.
They checked me at Hashi's diagnosis, and it was negative. I think that they need to add Coeliac to annual checks for anybody with any auto-immune disease. Agree on shoulder/auto-immune it does seem to be quite prevalent.
Oh that is such a shame. Conventional Coeliac testing misses about 50% - great for late stage disease but poor in the early stages when you could do more about it and slow down the inflammatory cascade sooner. At least you now have the diagnosis and can concentrate on starting to heal x
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