Hi guys, whilst I do my gluten challenge and await my blood tests on 20.09.12 my research into Coeliac disease continues.
What I can't find is a really basic reason for my 4 non-IBS symptoms:
1. My right hand has felt numb for about 9 months. We've been monitoring it at work as it is my mouse hand. Whilst I was gluten free it was minor, now I'm eating gluten again it's really bad, worse than before.
2. My left foot has a weird buzzing in it. The first time I noticed it, 2 months ago, I ripped the sofa apart trying to find the phone that must have been vibrating, there was nothing there. So annoying.
3. My 'wind' pre gluten free would often smell metalic and leave my underwear smelling strongly of it too! When gluten free that stopped immediately. It hasn't come back yet.
4. My shoulder is really stiff in the morning with loss of rotation, this has been going on nearly a year. I also struggle to balance on one leg for a few minutes whilst pulling trousers on etc. During my gf period this was much less apparent.
So, the hand could just be a repetative strain injury, the foot I can't explain, the metallic smell could be something else I guess, not sure what though, couldn't find anything about that online and my shoulder / leg thingy could be frozen shoulder or something else.
So all my non-IBS symptoms can be explained, but added together could they be due to Coeliacs or is my research off?
Thanks for your comments and discussions guys, it's really helping me to learn more about the illness I might (or hopefully don't) have.
Hi HJA, I used to have both pins and needles (tingling) in hands and feet and a numbness sensation in feet, especially the left one - prior to being diagnosed and 'attempting' to go gluten free. Being perfectly honest because of all of the hidden gluten in so many things and under so many disguises, it wasn't until I joined this group (GFG) that I began to find out where all this hidden gluten was lurking. I now feel so much better - and my ankles which, on occasion, had a propensity to swell up slightly and sometimes quite a lot are now slimmer than they have been for over thirty years.
The one thing that you haven't mentioned but that I had very badly was always feeling dreadfully cold. My hands would be like blocks of ice - my feet would feel colder still (if that was possible), my nose would feel as though I was strolling across an open moor in the middle of a blizzard - and I would forever be grabbing a warm cardigan. At one time, I was in hospital - I'd just had a major operation - the ward was stifling (according to everyone else) - but I was in thick soft pyjamas and sheets and blankets pulled up to my chin and even then I was dithering.
Metallic tastes and odours on many medical sites advise that this is often an early warning of the onset of coeliac disease or sometimes susceptibility to coeliac disease.
I also used to have a stiff and painful shoulder - thankfully (and touch a million trees worth of wood) these symptoms have all gone!!
But I do often wonder how ill I would feel if I hadn't discovered this site!
Hi HJA1975, i am not coeliac i am gluten sensitive but i have or have had every sympton you have stated above.
1) Tingling and numb feeling in my hands and feet, my doctor told me this was due to my low iron? have you been checked out for that.Also, i have arthrititis in my hands and if i spend too long using the mouse (i have my own computer based business!!) the pins and needles is always worse.
2) The weird buzzing, i occassionally get not so much now im GF, but i used to get it in my ankles and elbows and groin.
3) Metallic smell yes i had this too before going GF not so much now, although i still get the taste of metallic in my mouth sometimes.
4) I had frozen shoulder for 2 years and it was incredibly painful, i was on strong medication for a long time, sometimes i think this is what made my GI situation worse than what it aready was.
There are many other symptoms that i have but on the whole i do feel so much better for going GF, i also at the moment have been put on a Dairy free diet trial for 2 months, as my asthma has been getting worse and also i have been getting very bad hayfever symptoms.
This site has given me more information than any doctor, dieician or doctor that i have had any dealings with, although i do feel like i am one of the lucky ones as i have been fully supported whereas, i know alot of others have had no support at all.
Good Luck
Paula x
OMG, I cannot believe you guys have had my symptoms too, I was almost expecting people to say they could be explained individually and it's me looking into things too much.
Yes the Dr has ordered my iron levels tested on the 20th too but I think that was out of routine, I didn't mention the metalic smell to him. I wonder if it was because I briefly mentioned the tingling? I didn't know that was down to the iron.
I don't want to go on medication other than suppliments if I can help it! I hope when I go back to gluten free all the symptoms, including the painful shoulder, will disappear.
Like you Paula and Lynxcat, I might not have made the association between all those symptoms and Coelicas! I wouldn't have made a connection with them and my digestive problems at all. But now I am questioning lots of things, I wonder if the metallic odour is because I am not absorbing the iron so it is coming out?
The slimmer ankles would be a brilliant result too, hate my cankles!!
but no, I do not feel cold, not at all. Is that to come I wonder? I don't know.
very gluten intolerant - never done the challenge to get tests as react so badly to the tiniest amount of gluten. Ditto on the freezing hands, numb shoulder to little fingers (both hands),, got ergonomic keyboard, bouncy arm to chair, wore elastic tied to belt over shoulder to hold wrist ...fluid retention, metallic taste, muscle cramping, no grip by the end - couldn't even squeeze toothpaste - all gone now gf Also ghastly periods (three weeks out of four) migraines, depression, chest infections......so nothing surprises me really anymore as a possible result of a gluten problem. No explanation, just glad they have gone.
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That's such a long list and if there weren't sites like this the connection might not be made between them.
My periods were really bad too so I had the implant last year which sorted that instantly so I never would have made a connection with that and my other symptoms. I have also read a symptom is miscarriage, I had 5 before successfully having my children. Could Coeliac disease have played a part? Wow, its all quite scary.
I experienced tingling and numbness in both feet and hands. I personally found that gluten intake or increased sugar with meals would cause a wave of tingling in my feet- which I initially never associated with food.
Having been gluten free for a year the numbness and tingling has improved but a neurologist and rheumatologist have been testing my nerves as nutrient/vitamin deficency can cause these sensations. I have been on thiamin and now vitamin d as I more recently have experienced shoulder bone pain and the specialist believes this is down to vitamin d/ calcium deficency. Once gluten free and having all your vitamins levels checked I'm sure these symptoms will subside. Good luck :0)
Thanks Cath, I am so glad I requested my calcium be tested then! The dr just suggested an iron check but as I had already started my reading on Coeliacs I aske for calcium too.
I'm getting more convince the tests are going to be positive!
Also before diagnosis I had severe cracking bones all over, it was frightening. I was initially put on calcium tablets as i can't tolerate lactose since going gluten free. so maybe I need to go back on them again...
After the blood test and biopsy if coeliac is confirmed you should be referred for a dexa scan to check your bone density too which will be reassuring.
Tingling and coldness in hands/feet can be caused by something called peripheral neuropathy and this is a known potential outcome of gluten sensitivity.
I had a tingly/ buzzy left arm (right arm too but less buzzy) for about 4/5 months last year and was told by GP it could be a Vit D deficiency or calcium leaching from my bones. Also had numbness, with weak muscles and fatigue that came in spurts like a misfiring car engine. At times, my balance would go, almost vertigo.
I've been GF for years, and was on a superstrict GF diet for 18 months before this as I was looking for the cause. In April I was diagnosed with Reactive Hypoglycemia, which I've since found is quite common in coeliacs. As Cath suggested, it is a reaction to sugar in the diet. Since following a GF RH diet the tingling, buzzing and shoulder pain has gone completely.
RE: taste/ wind: I got this as my first recognisable sign of lactose intolerance. I've been LI for about 8 years but remember a very strong 'battery' taste in my mouth and sulphurous wind! Pleasant times!
All of your symptoms are gluten / malabsorbtion related ...Shoulder pain = liver..tingling in hand = neck +should also the foot tingling.... your body is in =survival left spin. My treatment of choice of which I am a practotioner ...Bowen NST...treats the whole body......nsthealth.com
before i went glutenfree i use to complain that my cup of tea tasted like a 2p coin, i tried loads of different type of tea....but it was still yuk............now 7 months gf i really enjoy a good old mug of yorkshire tea.
i had pins and needles all the time till i started on adcal-d3 within a month they stopped, my joint pain is loads better, so much so i can ride my motorbike again.
the acid reflux, heartburn, period pains, headache, bloating, depression and general feeling of being slightly out of tune....as if everybody else was living in HD and your were still in analog....is all but gone.....only hassle i have at the moment is my hair seems to be gettin thinner and thinner....but all things considered life is a lot easier to cope with now....
I was diagnised with cardiac syndrome X which gives angina and is very scary I also had the symptoms of fibromyalgia/chronic fatigue, It took about a year but a lot of the symptoms nearly resolved. I KNOW they are gluten led as I get low blood sugar ( always have!) and I was somewhere where there was NO GF foods so I had 2 biscuits and within 1/2 an hour I had massive chest pain and 2 weeks later the muscle/bone /fatigue problems are fading.
So it appears that gluten is a really horrible thing which affects people differently.Hopefully when you are GF again your quality of life will improve -----Good luck
Thank you everyone for your replies.
I am finding it all very scary, there seems to be an endless list of problems associated with coeliacs / gluten intollerance. I am realising I have had more symptoms and for longer than I originally thought. Luckily for me I don't feel TOO bad, I am certainly not as ill as many of you.
Most seem to indicate that with a GF diet and various suplliments the symptoms can almost disappear and you get a new lease on life. As my symptoms seem quite mild in comparison to some of you that could be a good indicator that I'll be a GF success story one day
I had the tingling hands for years and slightly numb, when i was eating gluten for the testing my whole arm went completely numb and was almost hard to move it as it ached if i did.
I have had years of shoulder aches and arm aches which is always in the right arm.
the the first time after a few years of a horrible cold aching feeling which was very uncomfortable it has returned this past week and I have been having trouble getting the food balance right and believe this is whats causing it along with the pms getting worse it seems during this month,unlike last month when I ate well around that time.
I must point out I have raynaud's and this makes aching and pain in my hands worse and constant.
I found out by myself before the blood test came back that i am Allergic cause lips,neck,eyes and forehead all swelled and even my ankle. The itching i had suffered with since about the age of 10 disappeared when i stopped eating gluten for the testing
I thought till during the testing i was intolerant and thought this for a few years but after reading several sights on gluten allergy things from the past 20 odd years made sense such as 11 years ago the rash that appeared two nights in a row but disappeared by morning which looked like i had rolled my whole body in nettles and was so itchy i cried. The rash reappeared 2 years later for just 1 night this time and haven't had it since.
Odd days now I feel scared of food where as before I loved it and loved cooking,I'm sick of the burning i get if i have a single bread crumb ,or a condiment is containing a modified starch gets into my system.
only the other day i tried the lentils i use to love which said may contain traces of gluten on the packet to find they had loads,they was either modified or the boiling made it get from the skin into the whole lentil but my lip swelled and the following day after 2 antihistamines i am still itching now and this was 2 days ago when i ate these.
I hope you get an answer and not left in limbo wondering,it is hard and miles away from fun .
We are all dealing with something we would rather not but have to cause we have no choice and the adjusting can be massive.
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