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Peripheral Neuropathy...


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#1 sparkles

 
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Posted 05 September 2006 - 09:30 PM

I have peripheral neuropathy...on Vitamin B12 shots and take B complex vitamins. I also have diabetis. My neurologist thinks the neuropathy is related to both malabsorbsion issues (celiac disease) as well as diabetis. My other celiac disease symptoms seem to be getting better but the neuropathy is getting worse.... is this just something that I will have to learn to live with? I wonder if even tho I have been gluten-free since June of 2002, there is permanent neurological damage. anyone else with neuropathy? Currently I am trying Aquatic therapy and acupuncture. I am not sure if either is doing any good.... but I guess it beats not doing anything. I don't take the meds for neuropathy as neurotin doesn't work and the other drugs cause pressure in the eye to increase causing problems with my glacoma. I guess I am just curious if any one has neuropathy and if they are finding that there is no improvement on the gluten free diet.
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#2 Guest_Doll_*

 
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Posted 05 September 2006 - 10:19 PM

I have peripheral neuropathy...on Vitamin B12 shots and take B complex vitamins. I also have diabetis. My neurologist thinks the neuropathy is related to both malabsorbsion issues (celiac disease) as well as diabetis. My other celiac disease symptoms seem to be getting better but the neuropathy is getting worse.... is this just something that I will have to learn to live with? I wonder if even tho I have been gluten-free since June of 2002, there is permanent neurological damage. anyone else with neuropathy? Currently I am trying Aquatic therapy and acupuncture. I am not sure if either is doing any good.... but I guess it beats not doing anything. I don't take the meds for neuropathy as neurotin doesn't work and the other drugs cause pressure in the eye to increase causing problems with my glacoma. I guess I am just curious if any one has neuropathy and if they are finding that there is no improvement on the gluten free diet.


I personally did have some neuropathy that DID clear on the gluten-free diet, but I did not have any diabetes related complications previously or now.

If your neuropathy is diabetes related, more than likely going gluten-free will not help. If you have Type 1 diabetes, there is some evidence to say that neuropathy in some of these cases is autoimmune in nature.

I agree that the treatment currently prescribed for diabetic neuropathy is useless to say the least.

The most important thing is to keep your blood sugars as normal as you can. Is your HbA1c 7.0 or less? 6.5 or less if you are a Type 2? This will prevent further damage, allow healing of your nerves, and reduce pain. Some people experience more neuropathic pain when their BG's are high (high sorbitol levels).

There is lots of evidence to suggest C-Peptide can help or prevent neuropathy, at least in Type 1's. C-peptide is occurs alongside insulin in the body. I would love to get my hands on the stuff, but it's still not available yet. All tests show positive results, but unfortunately, Lily (the insulin maker) has patented the C-peptide molecule if you can believe it! I'm planning to steal some from the university lab..hehe....;)

Benfotiamine (Synthetic fat-soluble Vitamin B1) also has been shown to help. Normal B1 has not. Do a web search, you can buy this online.

Lastly, if you do a web search on Clinicaltrials.gov, you can find many diabetic neuropathy studies that are trying many promising treatments.

Do you have Pernicious Anemia (Is that why you are on B12 shots?). If so, sometimes neurological damage from undiagnosed PA is permanent.
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#3 ravenwoodglass

 
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Posted 06 September 2006 - 08:28 AM

Well Doll has basically said it all very well. I also had neuropathy before celiac diagnosis that did resolve for the most part. It did however begin to come back before I was diagnosed with diabetes. I consider myself very fortunate that they again resolved when my BS got under control. Try and keep good control of your sugar but for most if the neuropathies are from diabetes they do not resolve. If you have seen any beneft at all from being gluten free though I would not lose all hope. Neural pathways can take a very long time to heal if they do. I was still seeing slow improvement after 3 years.
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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)

#4 sparkles

 
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Posted 06 September 2006 - 08:31 AM

I have type 2 diabetis and for the last 4 years my HbA1c has been between 6 and 6.5. It has stabalized since going gluten-free. Yes, I have the Pernocious (sp) anemia and the shots are forever. I am just tired of the constant pain and tingling and all the other symptoms. I have symptoms in my hands and lower arms as well as my tongue (that just started about 7 months ago). I guess that I have been hoping that these symptoms would lessen as my gut healed. I am a floral designer so I work retail as well as do lots of stuff with my hands. I have had to give up hand sewing and am beginning to find it difficult to use scissors to cut fabric. Thank goodness for the Offray cutters! or I would also have to give up quilting. I am thankful that the other celiac disease symptoms have lessened or gone away but I was hoping the neuropathy would also follow suit.
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#5 jerseyangel

 
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Posted 06 September 2006 - 08:42 AM

It was the Peripheral Neuropathy that really scared me, and made me think that something was seriously wrong with me two years ago. Up until then, I had had GI issues, but at that time, they were getting worse, and I was getting pins and needles feeling in my legs and feet, burning on the bottoms of my feet and in mouth, and tingling and numbness in my face and arm.

The only thing I seem to be left with now is the numbness on the left side of my face, and the altered sensation in my arm. This comes and goes--and does not seem to correlate with gluten. I had it pretty strongly on Sunday--and otherwise felt fine.

I don't think any other diseases are at play here--I was just tested again (at my request) for thyriod, and she ran the whole panel which showed normal sugar.
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#6 ravenwoodglass

 
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Posted 07 September 2006 - 02:06 PM

I am a floral designer so I work retail as well as do lots of stuff with my hands.



Have you checked all the supplies you work with for gluten?
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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 mouse

 
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Posted 07 September 2006 - 05:33 PM

I started noticing my peripheral neuropathy several months after going gluten free. It started in the balls of my feet and has now spread to include the toes. According to my Rheumy, they is no way to stop it, but there is medicine to control symptoms if they bother you. I would not take the medicine. I personally do not notice it so much when I wear shoes. But, when I go to bed at night, my feet can really do a number on me. He also said that you have to stay gluten-free. Each person is different as we have all come to find out. So, my expierence might not be your expierence.
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Diag. Celiac Disease by positive blood test 2/03/2004
Allergies - corn, soy, casein, egg whites and wheat
Morphia Scleroderma
Osteoarthritis
Hypothyroid and Hperthyroid
Essential Tremors
Asthma
Migraines
Fibromyalgia - diag. in 1978 when they called it Fibrositis
PAD Peripheral Artery Disease
Angina and Atrial Fibrillation
Gluten Ataxia
Vitiligo
Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.
Ocular Myastenia Gravis

#8 darlindeb25

 
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Posted 08 September 2006 - 08:24 AM

I have neuropathy, I would say over my whole body. The doc says it is small fiber in my legs and feet, I also have carpal tunnel associated with neuropathy. My entire right side seems to be effected more. The pain seems to travel, usually it's my right foot that is effected most. When my right wrist gets sore, it travels up my arm and into my shoulder--then the nerve gets totally inflamed and can be days or weeks before it calms down. I have noticed surface feeling on my tummy sometimes not there at all, such as not feeling the heat from a heating pad.

I was sick for so long, over 25 yrs, that I feel my neuropathy is probably with me forever. I have been gluten-free now for over 5 yrs and the carpal tunnel was diagnosed over 8 yrs ago. The neuropathy has gotten better, but has slowed. My feet don't let me wander as much as I did a year ago. I just deal with it as I go.

Good luck to you.

Deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#9 TeacherInTexas

 
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Posted 09 September 2006 - 11:41 AM

I'm with you .....in that I would love to know if there were others also that got feeling back after going on a diet. At least you had a good neurologist....Mine was a quack .....and thought I had MS due to my symptoms but after a brain MRI/spinal MRI and the (needle test)...I forgot the name ...E something......Anyway, since he could not find anything wrong...he said that......"I was making up my symptoms" and then he had the audacity to get pissed off when I didn't take the depression drug he was trying to push off on me." He didn't even run any blood tests on me...whatsoever.....Which of course......made me not go back to him or see his flunkie that he referred me to as a second opinion (probably to cover his but for being incompetent). I went and started to take blood tests via labcorp (paid for them myself on the Internet)...expensive but sure beats the hassel of trying to get docs to run tests on you. I paid for the stool test for Enterolab and low and behold.....I was right...

I have a numb tongue, numb hands, numb feet/partial numbness in legs and a slight numbness all over....kind of feels weird...poke me with a needle and I don't even feel it...unless you jab it in, muscle weakness (probably atrophia),some numbness on face, and my left foot is a bit messed up (doesn't walk the same) as it used to...doesn't go heel toe..heel toe....I just kindof walk on it a bit flat footed.....thunk..thunk... and pulls a bit to the left and its H* going up stairs. I also have chronic fatigue, brain fog, ....my liver was becoming fatty (since 2002..had heart pain/a bit of heart swelling then too)....I'm only 110 pounds for crying out loud...(had another rotten doctor back then).....and I think I had a heart attack a month ago..(30+ days after going on the diet).....very mild...and it wasn't until the day after that I had heart pain and continued to have heart pain for the next 5 days (probably feeling the damage)...

I was diagnosed through Enterolabs at the end of June of this year (Gluten sensitive plus the autoimmune cells...both over 10)....and whether in Doctorland...they officially call that Celiac or they lump that into Glutan Intolerance....I don't really care.....since the symptoms are pretty much the same..... They said I currently do not have malabsorption problems (so a biopsy would have been negative)...but even though I'm still absorbing....I think I'm not processing what I absorb .....I do have some IBS symptoms...though...but they have improved a bit.


I've been on the diet since June 30 (which is over 60 days). I am still learning about hidden gluten/cross-contamination but I have been extremely strict on adherence....but heck...I have seen no improvement in the numbness. Doesn't mean I'm going to stop the diet.....heck no......because autoimmune cells = damage..........but I sure wish I could get some feeling back in my tongue...and more feeling back in my legs/hands....


.........I read some posts on this somewhere on this site that said something about low numbers of antibodies (still over 10)...........and just wanted to paste a quote of Doctor Fine (Enterolab Dallas, TX) www.enterolab.com...since both my results were 14 .....positive (10 or over) yet low....

(low can still = lots of damage)....especially organ/nerve damage for those unlucky enough to get organ/nerve damage



If my antigliadin antibody levels are only mildly elevated, does that mean I can eat some gluten?

"This question is more "wishful thinking" resulting from the mind trying to turn a positive test into what might want to be called "low positive" or even the equivalent of negative. However from our experience, a positive antigliadin antibody of any degree is like a positive pregnancy test. When a pregnancy test is positive, you are not a little pregnant, you are pregnant. The same is true for gluten sensitivity."



*****But anyway....if there are others that have numbness/possible nerve damage or muscle weakness or muscle atrophia......I sure would appreciate it if you would post if there was any change........reduction in numbness...and how long you've been on the diet......since my symptoms are still the same......but tongue is more numb.........maybe less fatigue.......but still overall.....pretty much the same.


-----------------------------------------------------------------------------------------------------------------------


I have peripheral neuropathy...on Vitamin B12 shots and take B complex vitamins. I also have diabetis. My neurologist thinks the neuropathy is related to both malabsorbsion issues (celiac disease) as well as diabetis. My other celiac disease symptoms seem to be getting better but the neuropathy is getting worse.... is this just something that I will have to learn to live with? I wonder if even tho I have been gluten-free since June of 2002, there is permanent neurological damage. anyone else with neuropathy? Currently I am trying Aquatic therapy and acupuncture. I am not sure if either is doing any good.... but I guess it beats not doing anything. I don't take the meds for neuropathy as neurotin doesn't work and the other drugs cause pressure in the eye to increase causing problems with my glacoma. I guess I am just curious if any one has neuropathy and if they are finding that there is no improvement on the gluten free diet.


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#10 jcc

 
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Posted 09 September 2006 - 08:57 PM

Sparkles~

I've know people with gluten related neuropathy to show improvement, although not complete, but not getting worse.

Here is a new article on other things that may contribute to neuropathy in diabetes.

If you were low in B12, you could improve just with the additional B12. Neuropathy due to B12 deficiency is often reversible if caught early enough.

Literature says that neuropathy directly related to gluten sensitivity/celiac disease can take up to two years to show marked improvement, so don't lose hope. It is probably different for everyone, and dependent on how long and how severe the damage.

Hi darlindeb!
Cara
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#11 Guest_Doll_*

 
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Posted 10 September 2006 - 09:17 AM

I have type 2 diabetis and for the last 4 years my HbA1c has been between 6 and 6.5. It has stabalized since going gluten-free. Yes, I have the Pernocious (sp) anemia and the shots are forever. I am just tired of the constant pain and tingling and all the other symptoms. I have symptoms in my hands and lower arms as well as my tongue (that just started about 7 months ago). I guess that I have been hoping that these symptoms would lessen as my gut healed. I am a floral designer so I work retail as well as do lots of stuff with my hands. I have had to give up hand sewing and am beginning to find it difficult to use scissors to cut fabric. Thank goodness for the Offray cutters! or I would also have to give up quilting. I am thankful that the other celiac disease symptoms have lessened or gone away but I was hoping the neuropathy would also follow suit.


I haven't read all the other replies so sorry if this has been posted, but if you are having burning/tingling in your tongue you need to have your B12 levels re-evaluated as soon as possible. You may need more via injection.

Your HbA1c is very good, but if you had Type 2 diabetes for awhile before being dx'd some damage may be permanent. Unfortunately some people also still get some complications with an A1c in this range. Genetics play a large role in some people. Keep up the good work though!

I personally think this is related to your B12 levels and PA.

I would also add a 1mg Folic Acid supplement to your daily diet.
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