Possible New Neuro Symptoms Since Diagnosis - Should I Avoid Dairy

[cristiana]

Hi – I’ve been reading this forum for many months, and now have decided to take the plunge and join as I have a question.  But thank you by the way for all your help along the way, it has been so good to learn about the disease from fellow sufferers!

 

I am a female in my mid-forties and following gastro problems was finally diagnosed with celiac disease back in May, by endoscopy.   To cut a long story short some numbness and tingling I was also experiencing in my hands upon waking, and also occasionally in my left leg, has all but gone since adopting a gluten free diet. My vit B12 is around 200 now – it was down when I was first ill.   My iron is now much improved, my haemoglobin levels now excellent.

 

But now I have have some new symptoms.  What I am experiencing is the sensation of walking on a boat, or a moving surface, when I am not.  This is far more noticeable when walking on the flat, as opposed to say on grass or uneven surfaces.    I also noticed a sort of slow tremor which I thought was coinciding with my heartbeat, but in fact today I leant on a surface and felt it, it seems to affect my torso and upper body, but took my pulse and I think my pulse was going twice as fast as the tremor!  I don't feel these things all day - it comes and goes.  I don't wake with the sensations either - something seems to set them off. 

 

I have just had my full liver enzyme and blood tests back from my consultant and he was really thrilled with the results – all normal, including immunoglobulins which were several points out of range six months ago.  My gluten free diet has been pretty good but perhaps on average one unintentional glutening a month.  I am trying to be much stricter now by taking my own food everywhere I go!

 

FIRST QUESTION:

Has anyone else experienced this sort of tremor/walking on board a boat feeling – and do you think it could be celiac related.  I am of course, becoming a bit of a hypochondriac, concerned about other health problems being the cause.

 

SECOND QUESTION:

Here in the UK getting tests takes a while so pending the next round of tests which I can only imagine are now on the horizon, with this latest set of symptoms, can anyone also tell me, apart from avoiding gluten, does dairy –or anything else come to that - also cause neurological damage?

 

The only other thing I should say is these new symptoms came on v. suddenly (within 48 hours) after lifting something heavy three months ago and I wondered, also, if this in fact might be the cause.   I have lower back an upper neck pain at times which seems to make things worse.

Many thanks.

 

[ravenwoodglass]

What you describe sounds like gluten ataxia. You need to be very strict and do all you can to avoid any cross contamination but it can still take a while to resolve fully. Your B12 levels are still very low. They should be over 500. If you are not taking a sublingual B12 you should do so as that may help the nerves heal faster.

Welcome to the board and I hope things resolve soon for you.

[cristiana]

What you describe sounds like gluten ataxia. You need to be very strict and do all you can to avoid any cross contamination but it can still take a while to resolve fully. Your B12 levels are still very low. They should be over 500. If you are not taking a sublingual B12 you should do so as that may help the nerves heal faster.

Welcome to the board and I hope things resolve soon for you.

Thank you so much for your advice ravenwoodglass, and kind welcome  I feared it might be gluten ataxia.  I am puzzled that it has only arisen after going gluten free - but then again, as you can see, my first attempts at gluten free in recent months haven't been very successful!  I am trying to be really strict now as I am scared this ataxia will just get worse.  It is reassuring to read that some people do recover.  Will continue with my B12.   One last question - would you say it is worth dropping casein?  I am not sure if that does nerve damage or not.

[ravenwoodglass]

Thank you so much for your advice ravenwoodglass, and kind welcome  I feared it might be gluten ataxia.  I am puzzled that it has only arisen after going gluten free - but then again, as you can see, my first attempts at gluten free in recent months haven't been very successful!  I am trying to be really strict now as I am scared this ataxia will just get worse.  It is reassuring to read that some people do recover.  Will continue with my B12.   One last question - would you say it is worth dropping casein?  I am not sure if that does nerve damage or not.

It wouldn't hurt for a bit to drop dairy and then when you have been feeling better add it back in and watch for symptoms.

[cristiana]

It wouldn't hurt for a bit to drop dairy and then when you have been feeling better add it back in and watch for symptoms.

Thank you so much - I really appreciate your advice.  

[Mum in Norway]

Hi Cristiana!

I am wondering, is wheat starch commonly used in gluten free baked goods and flour blends in UK as it is in Norway? If so, try to stay away from that and stick to what is naturally gluten free, as wheat starch has traces of gluten, but less than 20 ppm, so it is considerd safe for most celiacs.

[cristiana]

Hi Cristiana!

I am wondering, is wheat starch commonly used in gluten free baked goods and flour blends in UK as it is in Norway? If so, try to stay away from that and stick to what is naturally gluten free, as wheat starch has traces of gluten, but less than 20 ppm, so it is considerd safe for most celiacs.

Hi Mum in Norway!  

 

Thank you - sorry, only just seen your post.  Don't know how this system works yet!  

 

They don't use wheat as far as I am aware in the gluten-free foods/flours I buy - things like tapioca, potato, rice flour instead etc.  It is interesting though as soya makes my tummy sore and that seems to be in everything I like esp. chocolate.  So unbelievably I have had to stop eating the stuff, apart from Green & Black 85% bar which does not list soya in the ingredients - although it says on the packet it might contain a trace. I think I have read that soya might be confused for gluten in some people, so I wonder could that cause neuro problems, not sure where I saw it, may not be right?  Do you know if that is true?  Anyway, I don't want to take any chances!  Oh dear - my list of what I can eat is getting smaller by the day!

[Greebo115]

Hi Mum in Norway!  

 

Thank you - sorry, only just seen your post.  Don't know how this system works yet!  

 

They don't use wheat as far as I am aware in the gluten-free foods/flours I buy - things like tapioca, potato, rice flour instead etc.  It is interesting though as soya makes my tummy sore and that seems to be in everything I like esp. chocolate.  So unbelievably I have had to stop eating the stuff, apart from Green & Black 85% bar which does not list soya in the ingredients - although it says on the packet it might contain a trace. I think I have read that soya might be confused for gluten in some people, so I wonder could that cause neuro problems, not sure where I saw it, may not be right?  Do you know if that is true?  Anyway, I don't want to take any chances!  Oh dear - my list of what I can eat is getting smaller by the day!

Cristina - I won't eat any Green and Black's products, they declare gluten contamination across their whole brand (I'm in the UK if that makes a difference) - well, actually the label says"May Contain traces of cereal."  

It is becoming law here that companies have to declare gluten as one of the top (however many) allergies, and good practice to label possible cross contamination.

 

You may be glutening yourself.

Sorry.

 

This is from their UK site:

Are your products suitable for coeliacs?

Some of our products are suitable for people who have to avoid gluten in their diet. Please visit our nutrition page summarising what the "contains symbols" for each product and those which do not. Although some of our products do not use cereal ingredients, they are produced in a factory that does handle them and therefore there are risks of cross contact.

 

Open Original Shared Link

[cristiana]

 

Cristina - I won't eat any Green and Black's products, they declare gluten contamination across their whole brand (I'm in the UK if that makes a difference) - well, actually the label says"May Contain traces of cereal."  

It is becoming law here that companies have to declare gluten as one of the top (however many) allergies, and good practice to label possible cross contamination.

 

You may be glutening yourself.

Sorry.

 

This is from their UK site:

Are your products suitable for coeliacs?

Some of our products are suitable for people who have to avoid gluten in their diet. Please visit our nutrition page summarising what the "contains symbols" for each product and those which do not. Although some of our products do not use cereal ingredients, they are produced in a factory that does handle them and therefore there are risks of cross contact.

 

Open Original Shared Link

 

Greebo - thank you so much for pointing this out.  I think you may be onto something, especially as I have been eating at least a bar or two a week since my diagnosis! Shameful,  I have always loved chocolate and thought it was OK to eat this stuff as it is listed in the 2013 Coeliac UK Food and Drink Directory p. 142 as suitable.

 

However  (says she, reaching for a bar... before throwing it in the bin, boo hoo) you are right - it does say on the packet, "May contain milk, soya nuts and cereals" on the packet.   So this is the old CC problem....   To be fair to the brand they don't claim they are Gluten Free, I just assumed I could go with the Food & Drink directory recommendation.    

 

Anyway, thank you so much for your advice.  If it means an end to this feeling, I shall happily forgo chocolate forever!

[Greebo115]

Greebo - thank you so much for pointing this out.  I think you may be onto something, especially as I have been eating at least a bar or two a week since my diagnosis! Shameful,  I have always loved chocolate and thought it was OK to eat this stuff as it is listed in the 2013 Coeliac UK Food and Drink Directory p. 142 as suitable.

 

However  (says she, reaching for a bar... before throwing it in the bin, boo hoo) you are right - it does say on the packet, "May contain milk, soya nuts and cereals" on the packet.   So this is the old CC problem....   To be fair to the brand they don't claim they are Gluten Free, I just assumed I could go with the Food & Drink directory recommendation.    

 

Anyway, thank you so much for your advice.  If it means an end to this feeling, I shall happily forgo chocolate forever!

 

Yeah....I think I must be too strict for coeliac UK - they also say that several breakfast cereals that list malted barley as an ingredient as safe because it's "within safe limits"........I prefer to use my own judgement.......I have a mantra I learned on here: check every label, every time.

[cristiana]

I think it pays to be strict esp. with the scary neuro stuff.  Interestingly I have two UK friends who have been suffering symptoms and they have identified that it was probably down to their breakfast cereals containing malted barley.  When they told me  I considered they were taking far too many risks eating the stuff, and  yet there was I....!  

 

I too shall check the label, every time, from now on. Thanks!

[eers03]

I caught a small cold and have been using Ricola cough drops and drinking Tazo Calm tea.  I looked up the cough drops at 2 in the morning on the internet on my phone and they seemed safe enough.  Not so.  Like a moron, I waited a solid two days to cross reference them in my gluten free shopping guide 2012/2013 edition by Matison and Matison that was recommended to me by the Mayo Clinic and neither were listed as okay.

 

Halls and Luden's were there but not Ricola.  Only 3 flavors of TAZO tea were listed while Bigelow, Celestial, and Twinings had a list of approved flavors so long that it looked more like a scroll.

 

I thought to cross reference them after I all but outran Usain Bolt breaking what had to be a new world record fastest sprint to the bathroom.  I was moving so fast that under any other circumstance, stretching first would have been prudent. lol!

[cristiana]

I caught a small cold and have been using Ricola cough drops and drinking Tazo Calm tea.  I looked up the cough drops at 2 in the morning on the internet on my phone and they seemed safe enough.  Not so.  Like a moron, I waited a solid two days to cross reference them in my gluten free shopping guide 2012/2013 edition by Matison and Matison that was recommended to me by the Mayo Clinic and neither were listed as okay.

 

Halls and Luden's were there but not Ricola.  Only 3 flavors of TAZO tea were listed while Bigelow, Celestial, and Twinings had a list of approved flavors so long that it looked more like a scroll.

 

I thought to cross reference them after I all but outran Usain Bolt breaking what had to be a new world record fastest sprint to the bathroom.  I was moving so fast that under any other circumstance, stretching first would have been prudent. lol!

Isn't it complicated!  I just wish it was law to label everything with Gluten in it!  EVERYTHING - lipstick, cough drops, chocolates, vitamins.  Having to do all this detective work is very time consuming and let's face it, not everyone has the time to do it.   I sent off for an ingredient list from a lipstick company and they came back with all their ingredients listed in Latin.  As in Old Roman Empire Latin.  So I am none the wiser. I wonder what gluten is in Latin?!  

 

Anyway, hope you are feeling better.

[JoyMurphy]

I have a fluttering sensation in my brain.  It is scary.  It stuns and disorrients me.  But I also know the boat feeling.  I am dizzy and light headed all the time.  They stopped me driving for a while b/c it was so bad.  But the last time I was going over the bridge and all I could think was don't pass out on the bridge!  I felt almost like I was going over huge waves.  One after another.   I'm trying to figure it all out on another thread when I read yours....but I also did get the numbness in my hands and feet, and the tingling sensation down my arm.  Also, had a hard time grasping the pen as well.  When I have episodes of severe weakness, my legs are like moveing through mud...and I have had crawling sensations in them, as well as pain in my lower back and legs.  I also get the pain in the back of my neck radiated to the upper back.

[cristiana]

JoyMurphy - thanks for these comments.  I feel very much like you as you describe.    I had the numbness and tingling, for me it was usually on waking, but in recent weeks that seems to be much better.  I can't say I like the new feelings of being at sea, thought - esp. feeling of a downward surge running through me, my torso I would say, and head, just as if one was on board ship.  This can be when I am sitting or indeed standing upright.  I know the feeling about weakness and walking through mud - I am feeling this today, well, every day, although I have to say all these sensations don't hit me all at once - usually just at different times throughout the day.  Maybe it is our necks/backs causing this unsteadiness?

 

One other added difficulty has been the fact that I suffered severe anxiety out of the blue about six months before my gastro symptoms started and this did not get better until my diet changed.  I experienced a very real heaviness in my shoulders/upper back when I had this.  I am wondering if this 'on board a ship feeling' is actually my anxiety under a new guise - hypervigilence which notices then magnifies normal sensations?   The aboard ship sensation can be googled and a lot of people on anxiety forums in particular seem to list it as a symptom.  And yet it feels so very real to me.  Reassuringly on these forums many people say they were tested for this/for that, but the cause could not be found.   Which is reassuring to me as in the UK the waiting list for tests is months!

 

Anyway, I am thinking of starting a new post on this feeling of being at sea under the title - SHIP AHOY - any fellow sufferers?!   I am sorry to hear you are having these symptoms but perhaps we should be encouraged in that a couple of other posters on this site have mentioned that they had the feeling, then it eventually went.  Perhaps we are "all in the same boat", so to speak!.

 

Do let me know if you get any answers.  How long have you been gluten-free by the way?  And did the feelings of being on a ship start after going gluten-free.  For me, it was about three months into the diet, although I did have accidental glutening.

[JoyMurphy]

I have actually been gluten-free for one year and nine months, but who's counting.  I was diagnosed one year and five months ago....

I have recovered to some extent.  I can function better.  But I am not the same person I was.  I am hoping that will come in time, or if there is something else wrong, some doc will figure it out....I have a lot of neuro symptoms.  I couldn't put words together, I had severe fatigue and memory loss, I had poor word recall and couldn't have a coherant conversation.  I had a lot of GI symptoms as well.  The Neuro stuff hung on.  I was so weak I couldn't walk without assistance.  Now I am having these weak and dizziness spells, but not constantly like they were before.  They come maybe 3/4 times a month?  They couldn't catch them on eeg, but that's bc I had one on a sunday, they put the eeg on that tues, and took it off on fri.  I didn't have an episode until the following fri.  Frustrating.  

I have looked at the whole anxiety thing.  I just don't think for me that is the case.  I have had anxiety before, It feels differently inside to me.  Anxiety I have felt is almost a racing feeling, this is like living in slow motion.  Like being a wind up toy that wound down.  I have had these episodes in different places, with different people.  I don't know.  Anything is possible.  I am currently trying to journal everything I do an eat, where I go and who I am with.  

I had a few accidental glutenings.  So it is hard to understand what is from glutening and what is something else or maybe just the original damage.....

I did feel better when the celiac doc told me that he has a few patients that feel that fluttering sensation in the brain.  The other docs are ready to ship me off to psych 

[cristiana]

Hi JoyMurphy

 

So much of what you say rings true to my own experience - this word problem, I too have that, some days worse than others, but it is embarrassing as I sometimes have to do public speaking and I wonder what the audience must be thinking!  Or what inappropriate words I am using instead of the word I should be using!  I had to actually ask an audience for words a few months ago, describing the object, so they could give me the word - can you imagine!  Although they found it entertaining!  

 

Also what you say - not being the person you were before, that is how I feel.  My own consultant said I would feel much better - well, in terms of gastro yes, but in other ways I feel as if I have aged ten years.  I also know what you mean about feeling like you were racing before but are now in slow motion.  I would say that is my experience too and the only reason I am beginning to attribute some of this to anxiety is I read somewhere the other day that these new feelings can hit after the actual time of anxiety has passed.  For six months my blood readings were looking like they might be leading somewhere very serious... it was very stress inducing.

 

I am also hoping this is a sort of time lag thing - maybe, just maybe, one gives up gluten, then it take the body a while to catch up with the fact that one has given up, if that makes sense?  Or perhaps it would be nice to think that this is just the body readjusting to life without gluten.  A kind of a (let's hope) temporary hangover.

 

I really hope things improve for you soon.   It sounds like you are making some good changes.  I am getting used to the fact I can't eat out any more - at least I am saving some money!

[JoyMurphy]

oh, I have said some very inappropriate things.....Oh my.....afterwards I just think about it, and think....omg what did I do?  It's just very odd.  The frustrating thing with this disease is there is no certainty...no exact manual...no one path.....we all have different and overlapping symptoms and severity's.   support groups like this keep me grounded when I am at my whits end.  But it comes down to patience....in healing, in learning how your body reacts, in trying to figure out if anything else is going on, ontop of the celiacs.   Unfortunately, I am not a very patient person.  Living in a world where many people don't believe Celiac to be a "real" disease doesn't help either.  

I'm having a hard time adjusting to the not eating out...my plan is to get to the holiday party that I plan every year for the family business and then call it quits for the next 4 months.  I don't know if that will be the answer, but I know it can only help.  Just think how hard it is upon first going gluten free, how easy cc can happen, how easy it is for anyone around us to take that pita chip from accross the room and drag it straight through the gluten free guacamole that you slaved over...(yes, I'm still bitter over that one  ).  Imagine in a busy restaurant.   And anyone who has ever been in the restaurant business to whatever degree, knows what it's like in the kitchen on any given night even with the most well meaning of chefs.....In my experience it was ..."they want WHAT?" and you ducked and ran out of the kitchen...lol....

Good luck!