Hi has anyone been diagnosed with peripheral neuropathy due to being coeliac. Apparently its another autoimmune disease. Iv been getting symptoms like this but is not going to be easy to explain to gp.Thanks
Peripheral neuropathy: Hi has anyone... - Gluten Free Guerr...
Peripheral neuropathy
Written by
sammie27
To view profiles and participate in discussions please or .
Read more about...
47 Replies
•
Hi
Yes I too am a coeliac and I have been diagnosed with same problem I have had lots of test but the medical profession cannot find out what's causing the issue.
Condition being managed by tablets suffering every minute of every day 😂😂
Thanks for your reply thought I was going mad.Have got an a appointment in 2weeks so will mention it to the consultant.
I'm quite ignorant on peripheral neuropathy - as well 
- and I have not been officially diagnosed with CD yet. However, all I can say is that I used to have a quite high pain threshold and only more recently in particular (in the last year or so), I seem to have become much more sensitive to pain and occasionally feel a slight numbness in my limbs. I think there are ways to diagnose this pathology, so if you try to explain your symptoms to your gp and suggest this as a possible cause, then your doctor should know what to do...hopefully
Hi
Although I've only recently been diagnosed with coeliac disease , I've had peripheral neuropathy for about 8 or 9 years (probably about the same length of time as undiagnosed CD).
It began with numbness and tingling in my toes, crept upwards, until now I have tingling right up to my knees. I can best describe the feeling as a tight rubber band around my ankles and my feet are very cold (hot water bottles all year!)
I've had no treatment as my GP insisted it was caused by arthritis in my back. I was totally convinced it wasn't, but as he obviously wasn't worried about it, just put it out of my mind (I had other health problems at the same time - kidney stones, parathyroid adenoma - all probably inter-connected!).
I've told so many Drs (GPs, consultants) about this, but no-one picked up the possibility of CD - which I now realise is the probable cause (I've had very low Vit D, iron for years and also diagnosed with osteoporosis a year or two ago).
I assumed there was no treatment for this, nerve damage is difficult to repair and it's been caused by the lack of necessary nutrients to the nerves - the longest nerves suffer first ( and I can ignore it most of the time), and not a lot of hope of any improvement. Is this so? Should I be asking for a referral to a neurologist?
See im not sure it is that but have some of the symptoms, im getting really hot I don't actually get pain but its a weird feeling and frightening. It comes over all of a sudden like my arms go dead and paralysed I have to sit for a while then it goes,but my arms don't feel right its like nerve damage. I also have hypothyroidism before I went gf my arms were rock hard if that makes sence .I have got an appointment coming up with my gastro consultant see if see can help.
b12deficiency.info/signs-an...
Could it be B12 ? - Mal-absorption !
Hi Marz
Thanks for your reply. I think my problems possibly could be. My B12 was very low a few years ago before the coeliac diagnosis (although I almost definitely had it then) but my GP said it would pick up (I had other digestive problems at the time too)
I've been taking large doses of supplementary b12 ever since (not on medical advice) - although not the injections of course. For the last year or two the level's hovered around 300 -400 (313ng/L last June) which is low, but within normal limits. Hoping that now I have the coeliac diagnosis and am gluten free my absorption problems will improve (iron and vit D too))
Neuropathy has been my main symptom and has worried me for some years, so the coeliac diagnosis in August was a great relief.
Thanks again
Do hope things improve for you now you are GF. Docs seem pretty clueless when understanding B12 results. Unfortunately only 20% of what appears in the blood test results is available to be utilised at a cellular level where it is needed. Anything below 500 can produce neurological symptoms as you have discovered. The range in Japan starts at 500 going up to 1300.
Normal seems to be a word Docs are trained to use - we all so want to be normal that we accept the utterance They should be saying - in range - but where we are in the range is of such importance. To prevent cognitive decline B12 needs to be around 1000. So says Sally Pachlok - who wrote the book - Could it be B12 ? I listened to her speak at the B12 Conference earlier this year at Loughborough University.
Which sort of B12 are you taking ? Many of us on Thyroid UK seem to be B12D and Jarrow Methylcobalamin 1000mcg or 5000mcg seems to be favourite - they dissolve under the tongue and so avoid any stomach/gut issues. I still take them in between injections ! Just to make sure....although I think my spinal damage is irreversible as I have been without a Terminal Ileum for 42 years. Someone forgot to tell me I would need B12 for life and only started injections 18 months ago ! Living in Crete does make it easier as I am able to buy them OTC. I also have Crohns which rarely causes any problems - and have had it for 42 years !
I am also a VitD fan and take 10,000IU's daily in spite of living in the sun
Do hope your good progress continues. Oh - once on B12 supplements the tests are pretty useless as the results are skewed. Good to assume you are deficient and keep on taking the tablets !
Sorry for the ramble !
Not on any tablets at the mo I did ask gp to test my b12 before I went gf but wouldn't probably costs to much.it was only coz I mentioned it to my consultant she sorted the bloods out.results will go to her and gp so hoping between them both they will get it right. I was never told to take any vitamins.but I have been taking centrum.
Am assuming Centrum is a Multivitamin ? If so then there won't be enough B12 in the tablet. Best to take alone - plus a good B complex to keep the B's in balance. Folic Acid and B12 work together in the body and most B Complexes contain Folic Acid.
If you had gut issues - then I think it would be safe to say you would have had absorption issues with B12. Taking a B12 lozenge - keeping it under the tongue until it dissolves - ensure the B12 is absorbed in the micro-circulation and avoids the gut. You can also buy sprays which I have read are good.
B12 Deficiency is a neurological condition - so best to treat as soon as possible. The Guidelines below should be read by GP's - but it rarely happens. You can see that in the first line they do say that Docs should treat clinical signs even when the blood result is in range....
bcshguidelines.com/document...
In my non-medical view your GP should be treating you with injections - three times a week for two weeks or until your symptoms cease.
Lets hope you do soon get some results - and ensure you obtain some copies so you can map your own progress and report back here
Thank you so much for your help got an appointment next Thursday with my consultant will discuss it with her,as im getting worried about the feelings im getting in my hands and arms.
Make sure you are well armed with information from the links I have posted for you. Information is power and enables you to ask the RIGHT questions - so they know you are serious about your health. Let me know how you get on - would like to see those results We really do have to fight for our health. If you click onto my name you can read my Edited Profile !
(Reply to Marz earlier)
Not a ramble, and very welcome!
I'm taking 1000mcg methylcobalamin sublingually and also the "better you" B12 boost oral spray!
As my VitD has been low for ages I take 20,000 units weekly on prescription as well as 2000 units daily (partly an oral spray because of the CD). Still hasn't made it up to normal although I've been on this dose for about 2 years- a little Cretan sunshine might help!
My next blood test is February and I'm going to stop the B12 supplementation 6-8 weeks beforehand and insist on taking it further if B12 is still low and my peripheral neuropathy is still worsening.
Thank you for your help again
I spoke with Martyn Hooper - Chairman of Pernicious Anaemia Society - about my grandson and his B12 result. He said it takes months for the B12 to clear the system so the results will be skewed after supplementing. Personally I would continue with your B12 as you have peripheral neuropathy - just use your last test result to fight your corner.
You could contact PAS/Martyn Hooper by e-mail for advice that could re-assure you. The PAS Forum is on HU too where you find the details. I believe the Active B12 Test does not require you to stop supplementing.
Wishing you well.....
Thanks again Marz - you're a knowledgeable lady! Made an appointment to talk it through with my GP.
Good luck to you too - you've obviously taken control of your own health problems, which is the only way. No Dr - GP, consultant , whatever, is going to be as interested in your particular case as you are! Healthunlocked is so useful for that reason. My son has Hughes Syndrome, so I can keep tabs on that too.
I'll let you know if there are further developments. Keep well!
Hi Sammie27, now you ask what should you tell your GP, so what I think is you should write a list of symptoms and how you feel, be concise and specific and take your list with you, so you help your GP help you.
as a couple of questions have come up here's a link to peripheral neuropathy on all the HU sites, which may be of interest:
healthunlocked.com/search/p...
And this is from the GFG archives and what I think is interesting is how Cath feels that sugar is a trigger as there's a connection between diabetes and coeliac and with diabetes and peripheral neuropathy:
healthunlocked.com/glutenfr...
And good luck with this.
sammie27 in reply to
Thanks jerry very interesting.
joanne33 in reply to
The sugar connection's interesting Jerry. I'm a terrible sugar addict - particularly since I had to stop eating all my favourite gluten-filled goodies! Coeliac seems to be connected to just about everything when you look further into it!
Good luck with your GP.
Prof Hadjivassiliou in Sheffield seems to be the specialist in this area. Hopefully this paper he wrote might be of some use to you.
jnnp.bmj.com/content/72/5/5...
Thankyou very interesting its weird I have no problems with my stomach only had antibodies checked coz was losing weight and tired so perhaps its to do with not absorbing vitamins.
It's possible to develop peripheral neuropathy due to vitamin B12 deficiency. Vitamin B12 deficiency can be caused by celiac disease. If you can get your B12 level checked, I would recommend doing so.
Thanks im due a blood test next tues for b12 required by my gastro consultant as have been gf for a year in dec.I did request to have one done by my gp just before I got diagnosed but was told I didn't need it,Iknew something wasn't right.
Peripheral Neuropathy is not an auto-immune disease. It is due to a lack of vitamin B complex which leads to the deterioration of the neural pathways in the extremities, usually the legs. I saw a lot of this when I worked in an Alcohol Abuse Unit.
It may be that someone with CD can get this if they are suffering from malnutrition as a result of malabsorption syndrome.
All of the patients in the Alcohol Abuse Unit I saw who showed any signs of lack of Vitamin B were treated with intramuscular Parentrovite.
There is no cure, at the moment. Treatment is Vitamin B complex to prevent further damage.
Hi, I have peripheral neuropathy, but mine is because of my diabetes, but I also have coeliac.
What symptoms do you have.
Hoppy
Hi hoppy before being diagnosed with coeliac my arms where rock hard.Since going gf they seem to have gone bck to normal. I don't have any pain as such my arms seem to tingle all the time just feel weird. I have a physical job it comes all of a sudden like arms get heavy then like im paralysed. I have to sit down till it passes and can get really hot.sorry hard to explain.
Hi Sammie.
My symptoms are very similar apart from I have no feeling in foot and hands.
With the eyes being dry and blurry you should be referred to eye specialist as I had those symptoms, in the end I had a detached retina
Hoppy
I too have had CD diagnosed now for past 15 years I had various painfull tingles or sharp pains like electrical zaps....then 4 years ago I underwent surgery (day srugery) to replace 3 Cervical neck discs....only was expecting to be in for the day, was actually in for 2 weeks, as during the recovery time, I suffered a bleed to the brain...A Stroke...only days later while I was unable to get out of bed, I felt tingles Again like an electrical pulse on my right side, all the way up and down my body, Hoping this would all settle down, I never mention it while in hospital, and only months later, When it got cold did I notice that it never went away, I now suffer Peripheral Neuropathy 24/7 down the entire right side, I can't feel actually Hot & cold by touch on that side but seem to get a message from my brain, Hot is registered as barely Warm, but Cold is registered as a Freezing burning feeling in the part in contact with the cold object/surface.....My doctor did recognise this, and prescribed me with the Drug Gabapentin & Amitriptyline...neither of these take the pain away...and only if I go over the time when I need a dose, do I realise that Yes they are working, as the Pain level is unbearable at these times. My diagnosis is hindered by the Coeliac Disease, Stroke and the Neck Operation, No doctor has been able to say what actually caused it to be so severe...as I had experience it prior to the stroke/neck Op...So I cannot say it was due to My CD, but have read a number of articles that mention CD to be a cause (my medication dose, I prefer to keep it till evening and night time. as during the day, I find that most activities that I do, either a little Housework, or pottering around, help to dissipate the pain, but come the evening I need my meds. Good luck and keep asking your Doctor for his help
b12deficiency.info/signs-an...
Check your B12 level - must be around 1000 - do not accept normal.
So sorry you have been so ill,I get where your coming from with the hot and cold.my hands feel like they are on fire sometimes,my body can feel cold to touch but like my blood is burning.But its more the tingling im worried about like you said its like a electric shock.iv had that test done before as I had a ganglion removed abt 20 years ago so got abit of nerve damage from that.my arms dont feel right like I can't have them dangling as they go numb.oh well got to see the consultant next week will see what she has to say.
I dont have CD but i do have PN. I am gluten inyolerant and suspect two of my boys might have CD (we tested after stipping gluten so neg bloods) Its terrible. Please go to gp. Diet may help but I am only starting out with this. Look up AI diets esp AI protocol. But takesa long time to see effects. X
Sammie, from what I read tingling in arms and legs is very common in hypothyroidism - especially perhaps at night. I have had this for years. The rock hardness of muscle I have experienced when I had Repetitive Strain Injury - it was across my shoulders, not in my arm muscles.
Have you tried magnesium supplements, or magnesium oil? You might try a massager (you can buy them on line) on your arms if the tightness returns.
Absorption problems from gut issues are very very common in hypothyroidism and probably contribute to or cause the nerve damage and muscle spasms. Try sublingual B12 and try general B supplements as other say here. Try to work out what gut problem may be causing your absorption problems. You might not cure your present symptoms but you might prevent them from getting worse.
Do you spend a lot of time at a computer?
sammie27 in reply to
Hi thanks for your reply just had blood test yesterday forr vitamins but think it was only for b12 so waiting on results. I have coeliac but not stomach problems. Antibodies were position weight loss and tiredness. Was told I was absorbing vitamins. Since going gf iv put weight bck on so maybe still not absorbing.no not on a computer long I work in a care home as carer/domestic so alot of hoovering and moping.
Also Sammy I read that if you continue to have absorption issue after going off gluten as a celiac then it is worth thinking about whether SIBO, small intestinal bacterial overgrowth, is a problem.
Thanks everyone for your help.
I was diagnosed with CD nearly 3 yrs ago I had tripped in the street 6 months earlier and twisted my back and legs gp said pain would only last 6 months,I am now on crutches and bed bound most of the time I,ve been told by a specialist that I,ve got peripheral nerve damage in my back and legs I am now on gabapentin morphine slow release tabs and oralmorph for pain relief I,m in constant pain and even had to move from where I lived to a ground floor flat and need to have careers to look after me dress me and do everything I use to be able to do before I,ve had no blood test done in the 3 yrs I,ve been diagnosed but am almost a cripple now
So sorry to hear that im not half as bad as that,im not in pain as such perhaps you should have some bloods done.Going by all the comments I don't think I have this now.i hope you start getting better.
GrumEone2 here.
This the 1st time of replying.
Most, if not all, the symptoms you ALL have can be part of the same problem.
PN (Peripheral Neuropathy), Crohns, Thyroid, eye and heart problems, even blood pressure, and bone degeneration can be connected.They are all just SYMPTOMS of Autoimmune Disease.
They are not separate problems e.g Crohns. If you have been diagnosed with it, there may be stuff happening elsewhere that you think is unconnected.
Along with the physical stuff there is the mental issues. I have Recurrent Depressive Disorder going to Severe and Suicidal. All the above I have and more. Being under St Thomas,s and Kings College hospitals. I have to be checked every 2 months by cardiac specialists.Your GP may miss some of them. They cannot be Specialist in everything.
The NHS is great with one or two Chronic problem together. It is hopeless when they turn into Multi Problems. You cannot blame them for that.
Not what you're looking for?
You may also like...
Small fibre neuropathy with coeliac?
Hi all, I was diagnosed with coeliac last August, it started with having painful feet in Feb2011...
Anyone else out there diagnosed with small fibre neuropathy and a mixed connective tissue after coeliac?
its sjogrens hence been given the mixed connective tissue disease title. I have been having...
Coeliac raised blood test
I have been on Gluten free diet for 2 years after been diagnosed with Coeliac .My last 2 blood tests
Wanted! Information on McDonald's fries - are they really GF?
would like to know more.
Has anyone any experiences? Have you been glutened? Or have you been okay?
Dextrose and Maltodextrin
I have been Coeliac for many years, if I accidently eat anything with dextrose or maltidoxtrin I'm...
Gluten free and losing weight?
Dermititis herpetiformis
Hi just found this forum and joined and posted a question. Ant responses would be welcomed.
What are your best tips for overcoming being glutened?
