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How Long Do Your Neuro Symptoms Last After Glutening?

cristiana

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cristiana Veteran
cristiana
Posted

I think I must accept that two years after giving up gluten some of my tingles and buzzes are here to stay.  However, someone offered me a gluten free cookie the other day which was, alas, nothing of the sort.  About two days latter my face was twitching and buzzing.  Now it feels stiff  but now my tongue feels slightly tingly.   Does anyone know how long it takes for neuro symptoms to settle after glutening - is there a typical time frame?   I ate the cookie just over a  week ago. It seems to me that my neuro symptoms get worse after glutening the longer I am gluten free, and yet my gut seems to hardly notice.

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CarlC Newbie
CarlC
Posted

I suspect gluten may have a half life of a week or more in the body.  That has been my experience over the last 15 years.  If this hasn't been researched, it should be.

GF Lover Rising Star
GF Lover
Posted

I think I must accept that two years after giving up gluten some of my tingles and buzzes are here to stay.  However, someone offered me a gluten free cookie the other day which was, alas, nothing of the sort.  About two days latter my face was twitching and buzzing.  Now it feels stiff  but now my tongue feels slightly tingly.   Does anyone know how long it takes for neuro symptoms to settle after glutening - is there a typical time frame?   I ate the cookie just over a  week ago. It seems to me that my neuro symptoms get worse after glutening the longer I am gluten free, and yet my gut seems to hardly notice.

 

How long do your typical gluten symptoms last?  It should be about the same for this one.  I don't get the severe gut pain now after gluten, it's much more bearable.  I believe it's because the villi (damage) has healed, but I still get many other symptoms including neural.  Any AI flare, for me, now lasts around two months only because 1 AI sets off my others so many more things have to get settled down to my new level of discomfort.  

 

Yes, after two years your tingles are likely to stay....your new normal.  Would you have accepted that cookie when newly diagnosed?  Don't slack on your protocols for offered food.  I know it's easy to become complacent, it's happened to me before.

 

Hang in there Cristiana  :D

cristiana Veteran
cristiana
Posted
  • Author

Thanks CarC - that is interesting and I think would tie in.  Colleen - I have no excuse, really, as I have (since recovery) put on ten pounds so should be cutting back.  Next time I shall use that excuse rather than the, "Are you sure that is a gluten free biscuit?" - as we call cookies in the UK-  as my reason not to eat it.  It did taste nice though... but with what it did to my face I won't be making that mistake again.  Gluten seems to effect my trigeminal nerves and I certainly don't want that situation to progress. 

 

Thank you both.

GF Lover Rising Star
GF Lover
Posted

Thanks CarC - that is interesting and I think would tie in.  Colleen - I have no excuse, really, as I have (since recovery) put on ten pounds so should be cutting back.  Next time I shall use that excuse rather than the, "Are you sure that is a gluten free biscuit?" - as we call cookies in the UK-  as my reason not to eat it.  It did taste nice though... but with what it did to my face I won't be making that mistake again.  Gluten seems to effect my trigeminal nerves and I certainly don't want that situation to progress. 

 

Thank you both.

 

I read up on the Trigeminal Nerve structures.  How do you know that it's that Nerve causing the trouble?  I ask this in all sincerity.  I know from experience that damaged and/or severed nerves continue to regenerate.  I still have times when the nerves at my groin going down my leg start their tingling and sometimes little pin pricks.  It's still healing 2-1/2 years out from being severed.  I think that is amazing !!!  I believe it's when our body can stop fighting itself that it can turn its attention to healing.  Another reason to eat clean and all that...lol.  There is still hope for you  ;)

 

Colleen

Jclegg Newbie
Jclegg
Posted
Since going gluten free I started paying particular attention to my blood tests for my iron and  B12 levels.
 
 A year ago I ate some cheese that had been cut with a knife that touched some bread and I spiraled down.
For about a week I had all the symptoms: exhaustion, headache, burning tongue and lips, ringing in the ear, pain though out my body.
  During that week I had a blood test and found that my iron had dropped from the 90´s to the low 20´s and my B12 had dropped from 500 to 200.
 
I now know that, my exhaustion can be caused by the low iron. In addition, from what I have read about B12, it plays a large part in nerve growth and maintenance which could have been the reason for my body pain before I stopped eating gluten. 
 
Now, if I do eat something with gluten, I increase my Iron and  B12 supplements and this helps me get back on track quicker.

Colleen I feel your pain, all I can say is we have to be vigilant.

 

Jim

cristiana Veteran
cristiana
Posted
  • Author

Hi Colleen...I',m very interested in what you are saying.  Around the time of my DX I had what felt like twitching in my face.  I was stressed at that time and suffering from all sorts of deficiencies, including iron.  

 

A close relative actually suffers from a twitch in his left eye area which sometimes causes one side of his face to contort.   He is living under a great deal of stress and another relative, a doctor, said that is what is behind all of that. As I understand it it can be the trigeminal nerve that is affecting this.

 

I thought I was going down with the same thing but noticed after taking magnesium and B12 supplements this stopped and concluded in my case this was to do with lack of B12 and magnesium  - esp. when my B12 was low borderline when DX'd.   I noticed it came back in January when I had some more medical tests and started a new job and got a sinus infection.   Then, in March one evening I was out and realised that when I touched my face it tingled.  Cold wind brought about the same effect.  Googled and it said Trigeminal Neuralgia!  Yikes!  

 

So I went to see my GP.  She wondered if it was thyroid.  Took a slew of blood tests - thankfully all fine.  Told me to come back if it carried on or got worse.  Well, it started off in the apple of my cheek next to my nose as a tangible but mild shock but now is tapering off to just right of my right eye and is so mild it is barely perceptible.   It has almost gone so I haven't gone back to my GP as I truly believe it is on its way out. It is as if it has followed the line of the nerve to the very end.  It does feel slightly prickly at times, so know what you mean Colleen.  I gather people who have had Bells Palsy say this is what healing can feel like. 

 

My doctor relative said he thought I had shingles without the rash just over a year ago when I had burning pain on the left side of my torso.  He encouraged me to take Lyrica but I didn't.  Again, he encouraged me to take Lyrica for this latest stuff but I haven't.  He thought it might be the trigeminal nerve that was affected.  I will resort to meds if I have to but I have found, yet again, that trying to eat really clean, getting lots of sleep, and taking B12 and magnesium has really helped.

 

Jim, thank you for your helpful advice.  I am going to contact my private nurtritionalist and ask her to look at my iron and vitamins and see if that is a possible cause.

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GF Lover Rising Star
GF Lover
Posted

Christiana, I agree whole heartedly about not taking Lyrica, you just don't need it.  It's become the latest pacifier for patients complaints about anything.  Getting your iron and nutritional levels is always a good idea.  Don't forget to throw in some exercise.  I get the twitching eye thing too and don't give it too much thought.  I try not to sweat the little things.  I've come a long way and you're getting there yourself :)

 

Colleen

cristiana Veteran
cristiana
Posted
  • Author

Colleen - and I thought you were winking at me!  Haha! ;)

 

Just out of interest, neural symptoms... aside Ataxia, which is a whole subject on its own, and vitamin/mineral deficiencies, why do we get neuro symptoms?  Does the gluten actually cause demyelination or inflammation or what?  Just wondering if anyone knows?

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