Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Possible New Neuro Symptoms Since Diagnosis - Should I Avoid Dairy

tremor vertigo dairy

  • Please log in to reply

17 replies to this topic

#1 cristiana

 
cristiana

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 161 posts
 

Posted 14 October 2013 - 10:24 AM

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.

 


  • 0

Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH


Celiac.com Sponsor:

#2 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,768 posts
 

Posted 17 October 2013 - 02:17 AM

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.


  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 cristiana

 
cristiana

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 161 posts
 

Posted 17 October 2013 - 02:14 PM

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.


  • 0

Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH


#4 ravenwoodglass

 
ravenwoodglass

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 13,768 posts
 

Posted 18 October 2013 - 02:25 AM

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.


  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 cristiana

 
cristiana

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 161 posts
 

Posted 18 October 2013 - 03:52 AM

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.  


  • 0

Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH


#6 Mum in Norway

 
Mum in Norway

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 100 posts
 

Posted 19 October 2013 - 03:18 PM

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.


  • 1

When I get sad, I stop beeing sad and be awesome insted.

True story.


#7 cristiana

 
cristiana

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 161 posts
 

Posted 23 October 2013 - 12:40 PM

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!


  • 0

Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH


#8 Greebo115

 
Greebo115

    Community Member

  • Advanced Members
  • PipPipPip
  • 60 posts
 

Posted 23 October 2013 - 01:23 PM

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.

 

http://www.greenandb...asked-questions


  • 0

Obvious symptoms started as a baby with gastroenteritis....
Self - diagnosed celiac at age 41 - Gluten-free since December 2012, shortly after realised in needed to avoid:
Dairy, soy, all grains, all pseudo-grains, nightshades, legumes, MSG, xantham gum, all sugar alcohols.
Low sugar/refined carbs since Aug '08 due to reactive hypoglycemia.

22/03/13 Mung beans and blackeyebeans reintroduced successfully!

26/06/13 Some symptoms mysteriously returned - found loads of CC in my nuts and dried beans!! (verified by food/symptom journal and emails to companies)

26/11/13 After 2 weeks on crutches (again) realised that legumes cause my joints to inflame - it's undeniable....legumes gone!


#9 cristiana

 
cristiana

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 161 posts
 

Posted 23 October 2013 - 02:43 PM

 

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.

 

http://www.greenandb...asked-questions

 

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!


  • 1

Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH


#10 Greebo115

 
Greebo115

    Community Member

  • Advanced Members
  • PipPipPip
  • 60 posts
 

Posted 23 October 2013 - 03:04 PM

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.


  • 1

Obvious symptoms started as a baby with gastroenteritis....
Self - diagnosed celiac at age 41 - Gluten-free since December 2012, shortly after realised in needed to avoid:
Dairy, soy, all grains, all pseudo-grains, nightshades, legumes, MSG, xantham gum, all sugar alcohols.
Low sugar/refined carbs since Aug '08 due to reactive hypoglycemia.

22/03/13 Mung beans and blackeyebeans reintroduced successfully!

26/06/13 Some symptoms mysteriously returned - found loads of CC in my nuts and dried beans!! (verified by food/symptom journal and emails to companies)

26/11/13 After 2 weeks on crutches (again) realised that legumes cause my joints to inflame - it's undeniable....legumes gone!


#11 cristiana

 
cristiana

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 161 posts
 

Posted 23 October 2013 - 03:18 PM

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!


  • 0

Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH


#12 eers03

 
eers03

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 224 posts
 

Posted 24 October 2013 - 04:44 AM

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!


  • 0
Diagnosis 11/2012

#13 cristiana

 
cristiana

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 161 posts
 

Posted 24 October 2013 - 07:58 AM

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.


  • 0

Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH


#14 JoyMurphy

 
JoyMurphy

    Community Member

  • Advanced Members
  • PipPipPip
  • 46 posts
 

Posted 03 November 2013 - 04:54 AM

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.


  • 0

#15 cristiana

 
cristiana

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 161 posts
 

Posted 04 November 2013 - 12:28 PM

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.


  • 0

Diagnosed by blood test and endoscopy Spring 2013

Adopted a gluten-free diet in May 2013

 

BRITISH





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: