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Small Nerve Fiber Neuropathy


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#1 IrishHeart

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Posted 25 May 2011 - 01:36 PM

Since Feb. 2008, I have been burning with neuropathic pain. The EMGs were "normal" of course and until I was recently DXed with Celiac, I was told there was "no reason" for the nerve pain I suffer with (from head to toe) and that I should take Neurontin and/or anti-depressants. (I do NOT) Some suggested it was "fibro" and to "live with it." I had 2 Neurologists tell me it wasn't a "nerve issue"...HUH? what part of "My body is burning and numb and tingly and painful to touch in some places ISN'T nervous system involvement??" :angry: :huh: :blink:

Small Nerve Fiber neuropathy isn't detected on EMGs and if just one of them had looked closely at the health history I filled out, they might have seen all the other symptoms I listed and come up with a celiac disease diagnosis. Instead, 3 1/2 years have passed and I am in burning pain every single minute and now, I know WHY!

Why couldn't any of the dozens of specialists I saw figure any of this out? I was READING about all this (even when I was glutened out of my head )and I saw it.... and my symptoms and the association with Celiac is clear as day!! I read several articles right on this site, for example.

Symptoms of small fiber neuropathy:
* a drop in blood pressure
* trouble urinating
* male impotence or vaginal dryness
* constipation or abdominal bloating
* nausea or feeling full even when little is eaten
* cardiovascular problems
* heat intolerance and abnormal sweating
* sluggish reaction of pupils to dark and light
* intolerance for exercise

Except for cardio problems and trouble urinating, this WAS ME! I had blood pressure at 80/50 and couldn't sweat in a sauna --everyone else was dripping wet....me? bright red and pulsing. I had to stop going to the gym because my pelvis, low back, legs and feet were numb, burning and pulsing in pain.......ARRGH!!!

Yes, I told this to the doctor.

I am raging mad right now (and will be in the doctor's office on Tuesday morning )because many of you know I was relentless in getting DXed and I listened to medical professionals tell me it wasn't a neurological problem. I have been unable to sleep through the night (just sitting or laying my cheek on the pillow is horrible pain) or live my life because of this agony.


Did anyone else have this neuropathy and parasthesia??? (I think I have seen these symptoms listed on some signature lines) and did it resolve for you once Dxed and gluten -free? Please tell me YES! I see the articles say it CAN resolve and I pray that it isn't too late for me.

I am sobbing my eyes out at the loss of time and the pain I endure and if I hadn't figured this all out, I do not know what would have become of me. Between the weight and muscle mass loss...just awful. As it is, I am in grueling PT trying to regain lost muscle and it is not easy to do it while on fire. :unsure:

And yes, I remain positive I will get well. This thing will not beat me, but the lack of medical help has been incomprehensible. If I could sue, I would.

thanks for listening. You are all so wonderful!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


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#2 Marilyn R

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Posted 25 May 2011 - 02:42 PM

Since Feb. 2008, I have been burning with neuropathic pain. The EMGs were "normal" of course and until I was recently DXed with Celiac, I was told there was "no reason" for the nerve pain I suffer with (from head to toe) and that I should take Neurontin and/or anti-depressants. (I do NOT) Some suggested it was "fibro" and to "live with it." I had 2 Neurologists tell me it wasn't a "nerve issue"...HUH? what part of "My body is burning and numb and tingly and painful to touch in some places ISN'T nervous system involvement??" :angry: :huh: :blink:

Small Nerve Fiber neuropathy isn't detected on EMGs and if just one of them had looked closely at the health history I filled out, they might have seen all the other symptoms I listed and come up with a celiac disease diagnosis. Instead, 3 1/2 years have passed and I am in burning pain every single minute and now, I know WHY!

Why couldn't any of the dozens of specialists I saw figure any of this out? I was READING about all this (even when I was glutened out of my head )and I saw it.... and my symptoms and the association with Celiac is clear as day!! I read several articles right on this site, for example.

Symptoms of small fiber neuropathy:
* a drop in blood pressure
* trouble urinating
* male impotence or vaginal dryness
* constipation or abdominal bloating
* nausea or feeling full even when little is eaten
* cardiovascular problems
* heat intolerance and abnormal sweating
* sluggish reaction of pupils to dark and light
* intolerance for exercise

Except for cardio problems and trouble urinating, this WAS ME! I had blood pressure at 80/50 and couldn't sweat in a sauna --everyone else was dripping wet....me? bright red and pulsing. I had to stop going to the gym because my pelvis, low back, legs and feet were numb, burning and pulsing in pain.......ARRGH!!!

Yes, I told this to the doctor.

I am raging mad right now (and will be in the doctor's office on Tuesday morning )because many of you know I was relentless in getting DXed and I listened to medical professionals tell me it wasn't a neurological problem. I have been unable to sleep through the night (just sitting or laying my cheek on the pillow is horrible pain) or live my life because of this agony.


Did anyone else have this neuropathy and parasthesia??? (I think I have seen these symptoms listed on some signature lines) and did it resolve for you once Dxed and gluten -free? Please tell me YES! I see the articles say it CAN resolve and I pray that it isn't too late for me.

I am sobbing my eyes out at the loss of time and the pain I endure and if I hadn't figured this all out, I do not know what would have become of me. Between the weight and muscle mass loss...just awful. As it is, I am in grueling PT trying to regain lost muscle and it is not easy to do it while on fire. :unsure:

And yes, I remain positive I will get well. This thing will not beat me, but the lack of medical help has been incomprehensible. If I could sue, I would.

thanks for listening. You are all so wonderful!



Dear Irish,

I don't know if I have the same diagnosis as you do, I'll ask my neurologist on my next visit. I was told my dx is polyneuropathy.

I never got diagnosed with celiac disease but had issues with neuropathy for two years before going gluten-free. 11 months later, my pain is at a "1" or "2" whereas it used to be at an 8, sometimes 9 or 10 on a scale of 1-10. I hope you find relief too. From everything I've read and been told by neurologist (who did her fellowship in neuropathy), there is permanent nerve damage, but you will have some significant improvement down the road.

Stress effects my neuropathy in a negative manner. I'm really careful about my diet but I can't control what happens at work. When something really bad happens at work, I head to the butterfly garden or visit someone I know will make me happy.

Meantime, check out massage therapists that do neuromuscular massage. If your neurologist or FP orders it and you have insurance, it may actually be partially covered. It will hurt like you can't beleive while they're doing it (but not as bad as an EMG by any means) but you'll feel great for a few days.

Wish you good luck, and better days ahead! :)
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#3 IrishHeart

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Posted 25 May 2011 - 02:53 PM

Dear Irish,

I don't know if I have the same diagnosis as you do, I'll ask my neurologist on my next visit. I was told my dx is polyneuropathy.

I never got diagnosed with celiac disease but had issues with neuropathy for two years before going gluten-free. 11 months later, my pain is at a "1" or "2" whereas it used to be at an 8, sometimes 9 or 10 on a scale of 1-10. I hope you find relief too. From everything I've read and been told by neurologist (who did her fellowship in neuropathy), there is permanent nerve damage, but you will have some significant improvement down the road.

Stress effects my neuropathy in a negative manner. I'm really careful about my diet but I can't control what happens at work. When something really bad happens at work, I head to the butterfly garden or visit someone I know will make me happy.

Meantime, check out massage therapists that do neuromuscular massage. If your neurologist or FP orders it and you have insurance, it may actually be partially covered. It will hurt like you can't beleive while they're doing it (but not as bad as an EMG by any means) but you'll feel great for a few days.

Wish you good luck, and better days ahead! :)


Thanks, Marilyn! You give me hope. :)
I do know someone who is giving me massages. Before going gluten-free, I could not stand being rubbed at all!! To use your 1-10 scale, with 10 being "just kill me now" :blink: I WAS a 10 until about 2 weeks ago and now, I am an 8...perhaps I am headed in the right direction?

Thanks a bunch for the encouragement!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 Luddie

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Posted 25 May 2011 - 06:33 PM

Thanks, Marilyn! You give me hope. :)
I do know someone who is giving me massages. Before going gluten-free, I could not stand being rubbed at all!! To use your 1-10 scale, with 10 being "just kill me now" :blink: I WAS a 10 until about 2 weeks ago and now, I am an 8...perhaps I am headed in the right direction?

Thanks a bunch for the encouragement!

IrishHeart, are you taking any B vitamins? Check with your doc on that. I take several Solaray B-75s now and the tingling in my toes and fingers has stopped. My toes feel almost back to "normal" -- no tingling or numbness.
My "burning knee" has also improved. Might be better control of my gluten intake, but might be the Bs.
I still have pains, now, but they seem to have migrated to my hands. Stiff and swollen. Next problem to work on! I will really be glad when I don't hurt anymore, anywhere!
Luddie
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#5 IrishHeart

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Posted 26 May 2011 - 05:53 AM

IrishHeart, are you taking any B vitamins? Check with your doc on that.
Luddie


Thanks for the thought, Luddie!! yes, I am on prescription strength Folic acid for anemia (I had a B-9 deficiency and it was found when I asked HIM to check it --geesh, who's the doctor here??!) :blink: ) and B-12 sublingual (since 2007) and all the Bs....on board!

I agree, a lessening of pain would be great!
IH
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#6 ravenwoodglass

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Posted 26 May 2011 - 12:47 PM

Glad things seem to be slowly improving for you. I guess I was lucky in that my nerve damage resulted in less pain rather than more. Even the EMG's they did didn't bother me at all. Unfortuanately it also meant I did considerable damage to my knees without knowing it until they couldn't hold my weight anymore. I did have paresthesias and those did resolve after a while on the diet with the aid of the sublingual B12. I hope your improvement starts to move at a faster pace soon.
  • 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)

#7 IrishHeart

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Posted 26 May 2011 - 02:23 PM

Glad things seem to be slowly improving for you. I guess I was lucky in that my nerve damage resulted in less pain rather than more. Even the EMG's they did didn't bother me at all. Unfortuanately it also meant I did considerable damage to my knees without knowing it until they couldn't hold my weight anymore. I did have paresthesias and those did resolve after a while on the diet with the aid of the sublingual B12. I hope your improvement starts to move at a faster pace soon.



Thanks so much, Raven...I figure any relief is a good sign. When this first started, I was burning so bad, it was horrific...and the parasthesia is widespread throughout. I will just be patient.
I guess I am just angry that no one put 2 and 2 together....I'm working on that anger as well. :)
As always, I appreciate your encouragement!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#8 Kim69

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Posted 09 June 2011 - 12:50 PM

Wow irishheart I really feel for you. I hope that your pain reduces quickly. I also am frustrated that we have to be Drs. I go to my Dr with a list of tests and referrals I want. I asked for a referral to a Coeliac specialist and showed her the details on my iPhone!

I asked for a referral to a neurologist - she was stumped as to why I would want to see one. I felt a bit put down so I backed out of it. Am not sure if I should push it.

I have had neck, shoulder and headaches (I wake up with them) for many years. I have had aching and weak hands for about 4 years. I get lower back pain when standing for extended time. I am very fatigued and weak all over. I can manage a walk to the train station but no further. I have brain fog and believe i have mild cognitive damage just this past year or so. For example i cannot spell the word world backwards if asked verbally (this is one question given to establish concussion/dementia). I am an engineer and really need my brain in top gear! I am 42yo and have been gluten-free for about 13 months.

Do you guys think I should see a neurologist? And if I do see one, what is he/ she likely to do?
  • 0
May 2010 Diagnosed coeliac via biopsy - on gluten-free diet, now not anaemic
March 2010 Still Anaemic and very fatigued, abdominal pain still (Drs had thought it was related to abdom operation)
May 2009 Anaemic - had abdominal surgery; hysterectomy to remove large fibroid
March 2009 Vestibular neuritus (not sure if related but who knows!)
November 2008 Depression (still on meds - working well)

#9 IrishHeart

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Posted 09 June 2011 - 02:49 PM

Your pain patterns sound a bit like mine. Weak muscles and loss of muscle tone can cause those headaches, back ache, fatigue. I see a Physical therapist, a chiro and a massage therapist right now. :blink:

I would at least go for a consult--why not? Tell him/her you have celiac and some continuing neurological symptoms. Maybe you can get some answers. Best wishes. I feel your pain, I really do!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#10 Kim69

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Posted 10 June 2011 - 01:53 AM

Thanks irishheart. I appreciate your thoughts. It's hard to know which direction to head in isn't it! Tomorrow I am off to a psychologist who specializes in helping people cope with pain and issues related to gastric illness. She is really helpful especially since she has Coeliac disease too.

Next weekend I am having the first of two breath tests to test for SIBO (bacteria). And during the week I did a stool test which is going to USA for analysis! What joy 

It's 7:30 Friday night and I am in bed already! Ah well!

I feel that I am starting to get on top of my abdominal pain thankgoodness. I have a really limited diet at the moment and that is really helping I think. I am also investigating psychosomatic pain with my therapist. I am willing to believe that my brain at least makes the abdom pain
worse. It's interesting to explore. You may be interested to know that I am already on cymbalta, an antidepressant often prescribed for neuralgic pain. It's been brilliant for my depression (i havebeen on ADs for longer than i have been dxed coeliac) and has also reduced the pain I feel (I stopped cymbalta and felt worse pain so wentback on it). I agree with you that we should find the root cause though.

I hope that going gluten-free works for you! I can really understand your anger that it took so long and so much research on your part to get dx'd.
  • 0
May 2010 Diagnosed coeliac via biopsy - on gluten-free diet, now not anaemic
March 2010 Still Anaemic and very fatigued, abdominal pain still (Drs had thought it was related to abdom operation)
May 2009 Anaemic - had abdominal surgery; hysterectomy to remove large fibroid
March 2009 Vestibular neuritus (not sure if related but who knows!)
November 2008 Depression (still on meds - working well)

#11 Kim69

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Posted 10 June 2011 - 01:55 AM

I meant to add that I will put a referral to a neurologist on my request list for next time I visit my Dr.
  • 0
May 2010 Diagnosed coeliac via biopsy - on gluten-free diet, now not anaemic
March 2010 Still Anaemic and very fatigued, abdominal pain still (Drs had thought it was related to abdom operation)
May 2009 Anaemic - had abdominal surgery; hysterectomy to remove large fibroid
March 2009 Vestibular neuritus (not sure if related but who knows!)
November 2008 Depression (still on meds - working well)

#12 IrishHeart

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Posted 10 June 2011 - 05:13 AM

I meant to add that I will put a referral to a neurologist on my request list for next time I visit my Dr.


Good idea! Bring him an article that says how neurological symptoms are related to celiac.

Kim, I do not think most people's pain from celiac disease is "psychosomatic". It's real.
Vitamin deficiencies from prolonged undiagnosed celiac cause major havoc in neurotransmitters. I know, believe me. Don't let any doctor tell you "it's all in your head". Look at all the signatures on this forum--all of these people (like me) were told they were "just depressed" or had anxiety from "stress"...that couldn't be more wrong. We are depressed and anxious because we are in pain and no one is listening to us and so, we remain undiagnosed for YEARS! I have read so many articles explaining the connection between celiac and pain/depression. Once off gluten, these people (me, too)feel much better! Just my humble opinion!

It is very good you are seeing a doctor who also has celiac--no one "gets it" like another celiac!! ;)

I am very glad you are doing the stool testing and the SIBO testing. They will help rule out/confirm things for you.

Do not give up figuring out what's going on!!! You deserve to feel better!!
Are you SURE you are not being cross-contaminated with gluten somehow??

Are you getting the right nutritional/vitamin support you need? Had all your levels checked?
A,D,E,B-12, folate, iron? My LOW folate level caused fatigue, brain fog, depressive thoughts and a burning mouth/throat among other things. I take prescription strength folic acid to correct this. B-12, D-3 in high doses as well.Much better after 2 months!

Good luck and I do hope you find what's still causing you trouble! Keep me posted --send me a personal message if you wish!

PS I also had a hysterectomy at a relatively young age--and THAT can also alter your hormone levels and cause some pelvic pain. You probably already know this :unsure:
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#13 Kim69

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Posted 14 June 2011 - 02:12 PM

Thanks for the reply irishheart. Yes all my levels are in the normal range. I wish it were that simple. I would expect that if I were being cc then my bloodwork would show antibodies. My recent tests have been normal.

Cheers. Ps I will pm you but have to work out how first!
  • 0
May 2010 Diagnosed coeliac via biopsy - on gluten-free diet, now not anaemic
March 2010 Still Anaemic and very fatigued, abdominal pain still (Drs had thought it was related to abdom operation)
May 2009 Anaemic - had abdominal surgery; hysterectomy to remove large fibroid
March 2009 Vestibular neuritus (not sure if related but who knows!)
November 2008 Depression (still on meds - working well)

#14 Neshema1

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Posted 22 June 2011 - 10:20 PM

Yes! I was dxd with small distal fiber neuropathy at mayo using QSART sweat tank method. Emgs, I was told, are better for large fiber. I also have dysautonomia. I suggest you check out dinet.org for more info. Think u will see much of your symptoms there & many of the pots dysautonomia patients have gluten intolerance. Good luck!
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#15 IrishHeart

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Posted 23 June 2011 - 05:31 AM

Yes! I was dxd with small distal fiber neuropathy at mayo using QSART sweat tank method. Emgs, I was told, are better for large fiber. I also have dysautonomia. I suggest you check out dinet.org for more info. Think u will see much of your symptoms there & many of the pots dysautonomia patients have gluten intolerance. Good luck!



Thank you for your thoughts!
While researching my symptoms for 3 years, I read about POTS---but I do not have all these symptoms.
After I posted this topic, I saw my doctor, a physiatrist (pain management Dr.) and 2 physical therapists.
My doctors say the nerves will regenerate in time. I no longer "tingle", except in the lumbar region. The physical therapists both say the burning is nerve compression and trigger point referred pain and shortened muscles and have given me stretching exercises and massages.

This, plus a gluten-free diet for 6 months--- and I am seeing a lessening of symptoms. It's slow, but better. My fingers are crossed.

Thanks again for replying!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif



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