Pins And Needles

[cristiana]

Hi Akron

I sympathise.   I must admit of all my ongoing symptoms (I was DX'd in May 2013 and went gluten-free a month before that) my pins and needles and facial tingles and eye twitches are the things that get to me most.  I have symptom envy sometimes when a friend says she has had a bad stomach after eating gluten, awful to admit, but I would rather something as obvious as that than these other neuro things which I am sure are connected but not always so easy to pin down.  

I have had MRIs - clear.   I have had nerve conduction tests - I do have ulnar compression, but that waxes and wanes.  When it is playing up I wake up with numb arms and hands and pins and needles when I am doing certain things around the house, like, say, unscrewing a coffee jar.

There was one occasion that I ate a gluten cookie (was told it was gluten-free).  The right side of my face had been  tingling for some weeks beforehand and then went into spasms after this cookie so I thought there must be some connection there.   

My recent diabetes test and TSH test revealed nothing abnormal.   I do suspect I have hashis and that is a contributing factor but TBH I have had such a slew of tests although I ought to insist on more I am trying to stay away from doctors just for a while, I feel I need a break!   It could be your meds are an issue here, one poster on this website finds this to be the case.

I have noticed that since my DX if I kneel my pins and needles that I have always had take much longer to go away.  I am going to ask to have my B12 numbers checked again as they have been low in the past and that could explain things.  It would be good to have your B numbers checked if you can because you may find you need to have injections or take sublingual supplementation.  I believe too much B6 can actually cause tingles - someone correct me if I am wrong - so that would be something worth checking too.

Stress is a massive factor for me too.  If I get very stressed my eyes start twitching.  I try to listen to my body now and that is an warning indicator to take things a bit easier.

but....

Why has it hit us after going gluten-free?  That is a question I would love someone else to answer, so any other readers, do please say if you know.  What I can tell you is that my whole journey to DX was very, very stressful and all that adrenaline going through my system didn't help.  

 

 

 

 

 

[Akron15]

Cristiana, I appreciate your quick reply & reassurance! I too have the pins and needles and they never go away in my feet. It makes me think diabetes. That's what I was trying to prevent on this diet change. My calves are the worst with the twitches and aches and that corresponded with so many who posted here. I was hoping they figured it out. I don't have a celiac dx & not even gluten intolerance confirmation so I think I will add back gentle gluten items and see if this all stops. The appt with the neuro being 7 weeks away makes me feel desperate! I can barely get through my full time job and my family gets a shell of me. Last night was an awful night of symptoms and insomnia so I am extra frustrated today.

[cristiana]

Hi Akron  

I am sure that a lot of those reading will be able to identify with the fear that you are feeling at the moment - even if they don't type an answer!  

Before I was dx'd I had blood results that really concerned my doctor and unti I had gastro symptoms six months later there was no indication that it was celiac disease that was behind them.   Although I was waking up with numb hands, had twitching muscles and buzzing (in my calves too) I was too scared to mention these symptoms to my doctor.  I had clinical anxiety and weird blood and I thought that was enough to be dealing with!

But what is known here is that celiac disease and non-celiac gluten intolerance can cause nerve damage.  If that is what you have, many will attest here, there is a very good chance it will get a lot better with a gluten-free diet and good supplementation.   Also, thyroid issues can also cause these issues.  It sounds like you could be dealing with one or other (or both).

As regards diabetes, please try not to worry.    Your glucose sounds good.   But even if you or I end up with it,  I have two relatives that have recently been dx'd with type 1; a friend who has been dx'd with type 1, and I know a whole bunch of people who have type 2.     For some of them it was a shock to get the dx but they are all doing so well now, have really adapted, and life goes on and life is good.

Don't underestimate the role anxiety has in all of this.  Whilst we have genuine symptoms, the worry and anxiety that can go with celiac disease and non-celiac gluten intolerance will not help.  I know that the days that anxiety strikes (thankfully for me, less and less now) all that adrenaline going through my system just puts all my symptoms on 'lound speaker' mode!  

So glad you have that neuro appointment.  (My neuro said nerves often start to complain after a while with celiac!)  In the meantime, maybe you could see the person who looks after your thyroid meds and discuss.   Re: celiac disease, how long ago was it that you were tested?

If circumstances allow, try to spend some time doing something different.  I found that through the most difficult times just  something quick like offering to take an elderly neighbour to the shops gave me something else to focus on.  I tend to ruminate on my problems and it isn't helpful.

You will get some answers soon from your doctors and chances are gluten may be behind it all.

I hope in the meantime that some of these original posters will get back to us as I would like to know what they have to say, too.  

 

[frieze]

perhaps it a food intolerance to what you have added/increased in your diet since going gluten free??

[Akron15]

frieze: I was wondering that and that's why I threw out the dairy thing! Thanks for replying!

Cristiana: I have never been tested for celiac. I did the gluten-free diet on my own because of reading how it can be the trigger/aggravator for autoimmune diseases (and I have Hashimoto's). I had zero symptoms prior to starting gluten-free except I couldn't lose one ounce and I went through spells with my digestive that were chalked up to IBS or I ate something wrong. These neuro symptoms came out of nowhere for me once I started it. I am eating carbs again for a while so that I can be tested for it. Thank you so much to you for all your kind words and reassurance! It really does help! In the meantime, there are other AI diseases with these symptoms and I am going to get those ruled out before my neuro appointment. (RA, Lupus, diabetes, etc...) I talked to a friend who is a neurologist and he asked for my list of symptoms. He was puzzled and said he could test for neuropathy but didn't see it as usual symptoms for a neuro disease, which was peace of mind.

[cristiana]

Wow Akron, that's great to have a friend as a neurologist!  Wish I had one of those!

Frieze is right. One other 'substance' that might be bothersome: as I understand it, soy can, in certain individuals, cause problems.  Have a look at this and search for the mentions of soy.  

Open Original Shared Link

I did a lot of swapping of gluten and dairy for soy following my dx and actually found it made my stomach hurt.   

Another problem for some celiacs is oats - even the pure variety.

 

 

 

 

[cristiana]

Sorry Akron, what I meant was even pure oats can cause problems in a few celiacs.    Oats are naturally gluten free, but can be contaminated with gluten when they are being processed.  You can buy oats that are not contaminated in this way called gluten free 'pure oats' but even these can cause problems in  a small percentage of celiacs because some of us cannot cope with avenin,  the protein contained in oats.  

[Akron15]

I will find the oats and try them! I've been as grain free as possible but wonder if I need to try to incorporate grains and that would help? I feel like I have most of the symptoms listed here & know it's tied to this somehow. Uncovering it will be an adventure! Open Original Shared Link

[cristiana]

21 hours ago, Akron15 said:

I will find the oats and try them! I've been as grain free as possible but wonder if I need to try to incorporate grains and that would help? I feel like I have most of the symptoms listed here & know it's tied to this somehow. Uncovering it will be an adventure! Open Original Shared Link

Hi!  That's a great attitude - good to look at it as an adventure!

It is really good you are going to be tested for celiac, if I have understood you correctly.  I don't know what they advise in the States but here in the UK I was told to have at least two slices of normal toast a day for six weeks (gluten challenge) before I could be tested.    But actually I didn't need to do that as I was already eating quite a bit of gluten anyway.   

If you have been avoiding grains you will need to find out from a doctor what someone with your particular issues should do so I would make an appointment to find out from your health professional.    Or you could post a query about the gluten challenge on this forum, explaining your situation again.

As for Fibromyalgia there are a lot of different views/experiences of it on this forum that might be worth reading.

A friend of mine has been diagnosed and she has cut out sugar and gluten and has made an amazing recovery.  She calls it the no sugar, no gluten, no fun diet, though!

 

[Akron15]

Just came back to update! There was a cancellation at the neuro so I got in this past Tuesday. Physical exam normal and he didn't suspect a neuro disease. Plan was to run some bloods & then MRI if nothing & then EMG if nothing in the first two. He said he sees autoimmune folks every now & again and sometimes they get to the end of the testing & nothing is found. Told him it wouldn't be the worst thing. So bloods for vitamin deficiencies, MS and Lupus were run. I also went to family dr and adrenal testing was going to start. Got bloods back yesterday and it was NOTHING I expected. All was normal but the B6. I am toxic! Look up those symptoms & I'm the poster child! It started 10 days into gluten-free diet. Just not sure why. Stopped my multi vitamin & feel the twitches are way less in the past 24+ hours. I just knew this was something I added or took away. B6 is water soluble so I should flush it but I'm not. Why? That's the next round. Thanks Cristiana and everyone else for your replies and eyes to read my freak out a few weeks ago. 

[cristiana]

On 1/3/2016 at 4:24 PM, cristiana said:

 I believe too much B6 can actually cause tingles - someone correct me if I am wrong - so that would be something worth checking too.

 

 

2 hours ago, Akron15 said:

JAll was normal but the B6. I am toxic! Look up those symptoms & I'm the poster child! It started 10 days into gluten-free diet. Just not sure why. Stopped my multi vitamin & feel the twitches are way less in the past 24+ hours. I just knew this was something I added or took away. B6 is water soluble so I should flush it but I'm not. Why? That's the next round. Thanks Cristiana and everyone else for your replies and eyes to read my freak out a few weeks ago. 

Hi Akron, I have quoted my comment and the corresponding part of your post as I am just blown away that you found the answer was too much B6, as I suggested  That just shows you what a hypochondriac/Dr Googler I have become, because otherwise how would I have known that?   I gave up studying human biology when I was sixteen!  

But seriously, I am glad you have your answer and it will be very interesting to see how the next round goes.   

Oddly I am about to ask for more B tests as I was taking a lot - thinking does it matter, because they are water soluble? - and then I have recently had a blood test and my haemoglobin is high normal for the fourth successive test.   I'm wondering if too much B12 might be responsible for that but need to look into it more.  My gastro told me to lay off the ferretin, too.  So it seems one can have too much of a good thing.

 Wonder if it might be worth looking at what foodstuffs B6 is in, you might see something obvious?

Keep us posted if you can, and hope the tingles stop soon.

 

 

[Akron15]

You sure did nail it! I was too worried it was MS or Lupus or Celiac to be able to really give that option a chance. If anything my guess was low b12. The only obvious things in my diet are Vitamin water and protein bars. If you look at food it's in practically everything in pretty high doses. Going gluten-free uncovered this or made it start. MTHFR gene maybe? Magnesium too low? I haven't taken my multi & am looking up everything I'm eating. Still having the twitches but not near as much in my calves and feet. My arch pain is gone & energy is up a bit. Still twitching though and had some arm and shoulder pain overnight. I read it can be 6 months or longer for nerves to heal.

[cristiana]

Well all I can say is thank you so much for coming back to report - this may help others.

I have stopped popping vitamins since my last round of tests and it will be interesting to see what 'deficiency' symptoms go away! Seems to me that an in ideal world all of us with these tingling, twitching symptoms etc should have our vitamins tracked - once diagnosed, here in the UK I had to ask to have D and B12 tested.  But maybe it is my B6 that has been the problem all along, like you, and that hasn't been tested.  I think I need to follow this up.

Thanks again and all the very best.

[frieze]

Open Original Shared Link

you try reading this.  it can be a problem of conversion to a usable form.  good luck

[frieze]

Open Original Shared Link

you try reading this.  it can be a problem of conversion to a usable form.  good luck

[frieze]

in other words you could have too much of a, for you, non usable form floating around, and still be deficient.

[Akron15]

Frieze - thank you for the link! Most helpful reading those 13 pages. Those symptoms described in there are exactly what I was having. I have to say that last night I sat down after dinner and realized that I had been sitting for over 10 minutes and didn't have one twitch. That was amazing! I am holding on to the very small progress I am feeling daily. I see a naturepath in a few weeks to review my diet and then go through testing to see if there is a genetic issue or anything else that is causing the issue with processing b6.

[frieze]

welcome!  they used  to have an active celiac section... you could try there as well, i think it is under "gluten" not celiac...  "mrsD" is a retired pharm.  they have a peripheral neuropathy forum as well.

1 hour ago, Akron15 said:

  Frieze - thank you for the link! Most helpful reading those 13 pages. Those symptoms described in there are exactly what I was having. I have to say that last night I sat down after dinner and realized that I had been sitting for over 10 minutes and didn't have one twitch. That was amazing! I am holding on to the very small progress I am feeling daily. I see a naturepath in a few weeks to review my diet and then go through testing to see if there is a genetic issue or anything else that is causing the issue with processing b6.

Open Original Shared Link

you try reading this.  it can be a problem of conversion to a usable form.  good luck