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givenupgluten

Nerve Pain Related To Celiac?

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I have many symptoms of celiac and for the past 7-8 years, i've had nerve pain in my legs and feet...along with joint pain and terrible aching, that I would compare to arthritic pain....although I'm only 29. For years, my doctors have assumed I had sciactica due to back/disc related issues. Although my mri's have shown nothing and my emg showed no damage, I still suffer with this. The doctors are baffled and can't seem to figure out what's going on. Would this potentially be considered a celiac symptom? I know that neuropathy is one of the 'symptoms' for some people, although I have no idea what that includes or really means.

Does anyone have any opinion on this..or can you describe YOUR nerve pain, if you are experiencing symptoms such as these?

I have not officially been diagnosed with celiac..i had a negative blood panel, made an appointment with a new dr. and the wait was so long I decided to start the gluten free diet b/c I was in pain. The diet works for most o fmy stomach issues. I meet with my new dr. next week...but wanted know peoples feelings on the nerve related pain that can be associated with celiac too.

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It sure can. Mine I would compare to someone shoving a hot poker down my legs starting at my hip. It, thank goodness, was not a constant but I also had a lot of tingling, burning and numbness in my legs, feet and hands. That was a constant. I also had loss of reflexes in both legs as a child and eventually they would discover in abnormal electromylograms that my nerves were not conducting signals, but that was years after the stuff started. I also have gluten ataxia.

Within a fairly short time after diagnosis and following the diet to the point of paranoia,(in my families opinion, at first anyway) my nerve issues were starting to resolve nicely. I did start taking a sublingual B12 which also helps a great deal. It did take about six months but I eventually was able to walk pretty normally and unless recovering from a severe glutening I don't usually need a cane anymore. The ataxia I don't think will ever resolve completely but it did start in childhood and I do have reflexes again now so who knows.

For some folks the parasthesias are a direct result of the bodies not being able to utilize B12 and they resolve completely after levels are brought back up and kept up. For those of us whose have nerve issues that are related more to the autoimmune process the recovery can be a bit slower. I think most do see at least some improvement though.

Hopefull others will also chime in on nerve related issues they have had. They are not a really common occurance but they definately exist. A good way to get info is to do a search using the words neurological and celiac, if you are a person who enjoys research you will be surprised how much comes up.

You mention you had MRI's done. Did they do an MRI of your brain? If so did they find anything they called UBO's or unidentified bright objects? If they did that would be noted on the report from the scan but your doctor might not have mentioned it as many think they are nothing significant. In reality they are diagnostic of celiac. I had seven on my scan but it would be another two years before I was diagnosed because my neuro was clueless.


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)

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 in time with proper diagnosis of Celiac November 2002

 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)

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It sure can. Mine I would compare to someone shoving a hot poker down my legs starting at my hip. It, thank goodness, was not a constant but I also had a lot of tingling, burning and numbness in my legs, feet and hands. That was a constant. I also had loss of reflexes in both legs as a child and eventually they would discover in abnormal electromylograms that my nerves were not conducting signals, but that was years after the stuff started. I also have gluten ataxia.

Within a fairly short time after diagnosis and following the diet to the point of paranoia,(in my families opinion, at first anyway) my nerve issues were starting to resolve nicely. I did start taking a sublingual B12 which also helps a great deal. It did take about six months but I eventually was able to walk pretty normally and unless recovering from a severe glutening I don't usually need a cane anymore. The ataxia I don't think will ever resolve completely but it did start in childhood and I do have reflexes again now so who knows.

For some folks the parasthesias are a direct result of the bodies not being able to utilize B12 and they resolve completely after levels are brought back up and kept up. For those of us whose have nerve issues that are related more to the autoimmune process the recovery can be a bit slower. I think most do see at least some improvement though.

Hopefull others will also chime in on nerve related issues they have had. They are not a really common occurance but they definately exist. A good way to get info is to do a search using the words neurological and celiac, if you are a person who enjoys research you will be surprised how much comes up.

You mention you had MRI's done. Did they do an MRI of your brain? If so did they find anything they called UBO's or unidentified bright objects? If they did that would be noted on the report from the scan but your doctor might not have mentioned it as many think they are nothing significant. In reality they are diagnostic of celiac. I had seven on my scan but it would be another two years before I was diagnosed because my neuro was clueless.

Thank you so much for your response - It was truly helpful! I AM a person who enjoys researching things, and so I will def. do a search on the words mentioned.

I have had an mri on my brain, b/c awhile back I was having severe headaches daily and it became a real issue. They found nothing, although I can't say whether or not they found any 'bright spots'...I was never told of that, but as you said, sometimes dr's tend to skip over the things they choose to. I have had 3 mri's of my lumbar spine, all showing insignicant disc bulging - none of which seems to be impinging any nerves in the area. I'm just baffled. My mother (who has celiac) and father also have many back/nerve problems. So it's difficult to tell whether it's just bad genes, celiac, or wear and tear due to the fact that I was a dancer for a majority of my life up until now. I also have a hemangioma that I'm having a ct scan done on this week. I doubt that is a cause of any of my pain - it's not even in the area where most of my pain resides, but I have to rule it out.

My mother was diagnosed many years ago, and she was told THEN that she could go off the gluten-free diet if her stomach problems were resolved. Obviously, this is not the norm NOW...but she did eventually go off, after suffering from nerve damage, etc...and she continues to have nerve related issues, which makes me wonder. Soo..this is def. something worth looking into with my dr. Meanwhile, I'm trying to get her back on the gluten-free diet as well!

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I have many symptoms of celiac and for the past 7-8 years, i've had nerve pain in my legs and feet...along with joint pain and terrible aching, that I would compare to arthritic pain....although I'm only 29. For years, my doctors have assumed I had sciactica due to back/disc related issues. Although my mri's have shown nothing and my emg showed no damage, I still suffer with this. The doctors are baffled and can't seem to figure out what's going on. Would this potentially be considered a celiac symptom? I know that neuropathy is one of the 'symptoms' for some people, although I have no idea what that includes or really means.

Does anyone have any opinion on this..or can you describe YOUR nerve pain, if you are experiencing symptoms such as these?

I have not officially been diagnosed with celiac..i had a negative blood panel, made an appointment with a new dr. and the wait was so long I decided to start the gluten free diet b/c I was in pain. The diet works for most o fmy stomach issues. I meet with my new dr. next week...but wanted know peoples feelings on the nerve related pain that can be associated with celiac too.

Also, I wanted to mention that my mri's found arthritis in the beginning stages in my spine, and degenerative disc disease. There was minor bulding from 2 discs....they once thought this was the cause of my nerve pain, but upon having 2 more mri's done, it shows no nerve impingement. I have achy pain down my legs that doesn't allow me walk for very long (go shopping, go to the musuem, etc) without suffering the consequences.

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Also, I wanted to mention that my mri's found arthritis in the beginning stages in my spine, and degenerative disc disease. There was minor bulding from 2 discs....they once thought this was the cause of my nerve pain, but upon having 2 more mri's done, it shows no nerve impingement. I have achy pain down my legs that doesn't allow me walk for very long (go shopping, go to the musuem, etc) without suffering the consequences.

I've had arthritis for 30 years (since I was 16) and was diagnosed with degenerative disc disease in 2001. I was in daily lower back pain from that and managed it with ibuprofen and yoga: if I skipped the yoga, it would be worse. I have arthritis in knees, hips and feet.

After going gluten-free, it took me a while to realize that my DDD back pain was GONE, just gone. However, the arthritis pains in hips, knees and feet got better in the first week. While I still have some pain, it is mainly after sports, like a 22 mile bike ride or all day doing yard work.

I hope yours gets better soon, givenupgluten. Best of luck.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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Also, I wanted to mention that my mri's found arthritis in the beginning stages in my spine, and degenerative disc disease. There was minor bulding from 2 discs....they once thought this was the cause of my nerve pain, but upon having 2 more mri's done, it shows no nerve impingement. I have achy pain down my legs that doesn't allow me walk for very long (go shopping, go to the musuem, etc) without suffering the consequences.

Hi There!

I am new to this site & absolutely LOVE it! But after reading your postings I just had to respond. For approx. 4 years I struggled with disabling pain in my feet, ankles, calves, lower back, buttocks & wrist, hand, arm, neck pain (with my head feeling too heavy for my neck) and migraines. I was bedridden for almost 2 yrs. Local dr's & neurologist saw nothing on mri's and no nerve damage on emg's. They made me feel like a liar. I asked to go to Mayo Clinic (in Scottsdale AZ) where they did no imaging and diagnosed me with Fibromyalgia. I've read all about it, etc. but I just felt that wasn't the 'whole ball of wax' and I searched the internet trying to find out more.

Then my husband & I relocated to another state where that dr. ordered cervical & brain cat scans & mris. I was told that there was nothing significant showing. I got a copy of the reports & reviewed them myself & researched words that I didn't know the meaning of. Hidden inside that report was written; 5-8cm Chiari Malformation. Hmmmmm

Of course I researched Chiari & found that it was a birth defect of the back lower part of the brain. It is considered a Rare Disease by the National Organization of Rare Diseases. I located a Clinic in New York that handles this birth defect specifically. While there, they also diagnosed me with Tethered Spinal Cord Syndrome.

The tethered cord was attached at my tailbone area when it should not be! 2 surgeries later (neck & lower back) and I could walk again without a cane or wheelchair and I now have residual leg pain daily, but I have a lot of my life back.

I was just diagnosed with Celiac 3 wks ago. I am 47 yrs old. My bowels became soooo bad that I hadn't gone for 2 wks and I was also diagnosed anemic & had to have a blood transfusion. I should've been tested for Celiac years ago. My mother was diagnosed severe Celiac 20 yrs ago - unable to get out of bed, depressed & malnourised. (She was previously a 3rd grade school teacher. Her symptoms involved diarrhea & mine were the opposite).

Anyway, we kinda feel that her celiac probably caused my birth defects since we know it has the potential to do some nasty damage.

We all know it is hereditary & I guess my situation went on for too many years. I just thought you should know about these 2 rare diseases because of the leg pain you mentioned. It sounded a lot like mine. You may want to look these up, especially the Tethered Spinal Cord Syndrome.

The name of the clinic in NY is "The Chiari Institute" They are affiliated with North Shore Long Island Jewish Hospital.

Good Luck & Never Give Up

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You sound a lot like me 12 years ago. I'm 46 now. I went the whole range of tests, from nerve conduction tests to testing for arthritis and lupus and anything else they could think of. I would get terrible attacks of joint pain that would last for days; this terrible aching that Advil never really touched. The worst of the pain was concentrated in my wrists and forearms and shoulders so they thought perhaps I had carpel tunnel. A series of tests for that showed nothing. I've also had sciatica since I was a teenager, though nothing shows up on x-rays. It's a radiating pain that literally hits every joint from the hip on down. Even my ankles and sometimes toes hurt from it. There have been times when it's gone up and into one of my shoulders and arms as well.

The attacks of joint pain slowly went away after going gluten-free. The last one was last year I think and it was nothing compared to the past. I've been gluten-free since Dec 06. The sciatica isn't completely gone, but it's so much better. And since I started working on the treadmill and stretching it's almost non existent.

I have many symptoms of celiac and for the past 7-8 years, i've had nerve pain in my legs and feet...along with joint pain and terrible aching, that I would compare to arthritic pain....although I'm only 29. For years, my doctors have assumed I had sciactica due to back/disc related issues. Although my mri's have shown nothing and my emg showed no damage, I still suffer with this. The doctors are baffled and can't seem to figure out what's going on. Would this potentially be considered a celiac symptom? I know that neuropathy is one of the 'symptoms' for some people, although I have no idea what that includes or really means.

Does anyone have any opinion on this..or can you describe YOUR nerve pain, if you are experiencing symptoms such as these?

I have not officially been diagnosed with celiac..i had a negative blood panel, made an appointment with a new dr. and the wait was so long I decided to start the gluten free diet b/c I was in pain. The diet works for most o fmy stomach issues. I meet with my new dr. next week...but wanted know peoples feelings on the nerve related pain that can be associated with celiac too.


"My mother always told me, it's okay to play with a man's mind

as long as you put it back where you got it when you're done with it."

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Please Help,

My Mom was recently diagnosed with Celiac. The doctors are not sure if she has the disease, but the endoscopy and colonoscopy seems to show that she has celiac.

My Mom has been suffering for almost 10 years with a pain in the lower abdomen. THis pain is very confusing since it goes to the back and to the leg. It is a sharp pain.

She has been seen the doctors for almost 10 years and they don't find anything. Finally the GI doctor told her that he believed that she had Celiac.

Now she is the diet, but she does not have any improvement. She has a terrible pain in the right side of the lower abdomen and it goes to the back and hips ending at the leg. I'm thinking that she has neuropathy.

Please advice me what doctors take care of Neuropathy or who will find this disease?

She is very depressed and she is loosing a lot of weight. She gave up completely. She thinks that the diet is not working. She is afraid of eating everything.

I'm afraid she will commit suicide.

Please help. If anyone suffers from that pain or similar please response.

I really appreciate your help.

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Please Help,

My Mom was recently diagnosed with Celiac. The doctors are not sure if she has the disease, but the endoscopy and colonoscopy seems to show that she has celiac.

My Mom has been suffering for almost 10 years with a pain in the lower abdomen. THis pain is very confusing since it goes to the back and to the leg. It is a sharp pain.

She has been seen the doctors for almost 10 years and they don't find anything. Finally the GI doctor told her that he believed that she had Celiac.

Now she is the diet, but she does not have any improvement. She has a terrible pain in the right side of the lower abdomen and it goes to the back and hips ending at the leg. I'm thinking that she has neuropathy.

Please advice me what doctors take care of Neuropathy or who will find this disease?

She is very depressed and she is loosing a lot of weight. She gave up completely. She thinks that the diet is not working. She is afraid of eating everything.

I'm afraid she will commit suicide.

Please help. If anyone suffers from that pain or similar please response.

I really appreciate your help.

Oh, jjtj, how horrible! For the suicide possiblity, I'm not qualified to help on that but please contact one of her doctors or the crisis clinic in your area. That is too risky to leave to chance.

How long was she on the diet? Please tell her that it DOES work, but it takes, usually, at least a month and sometimes more to feel better. The rate of accidents is high, as she is finding out if she is loosing weight. This too, should be brought to the doctor's attention. I believe Ensure is gluten free but most celiacs cannot tolerate milk in the beginning. I know there is a prescription-only drink like Ensure that is dairy free too so ask the doctor about that. That may calm her fears about eating something "unsafe" and keep her hydrated and keep her from losing weight.

Otherwise, for food I would suggest easy, plain meals. Plain roasted chicken (cook on aluminum foil if your pans are contaminated with wheat) or beef, turkey, fish, shrimp. Plain white rice cooked with water and maybe some olive oil added. Plain, cooked veggies - carrots, zucchini, squash, sweet potatoes. No spices - just a little salt, pepper and olive oil. Have her eat this plain food - it will help with her anxiety and keep the possibility of contamination down. Or make some homemade chicken soup -or Progresso Chicken and Wild Rice is gluten-free. Use Pacific chicken stock which is gluten-free.

I had lower abdominal pain, right hand side at diagnosis. They scanned me, ultrasound, x-ray, found nothing that would cause pain. When I eliminated all the gluten it slowly went away and only comes back occasionally - like when I have gluten.

And get her some gluten free sub-lingual B12. Sub-lingual is under the tongue and it may be the only way to get it into her if she has a lot of intestinal damage- it goes straight into the bloodstream that way. That is supposed to be really good for nerve pain. Trader Joe's has one and so does Source. Check a health food store if you don't have Trader Joe's where you live.

I hope she hangs in there. Others may post with better ideas than mine. I'll add her to my prayers.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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I absolutely agree with the recommendation of a sublingual B12. Make sure it's methylcobalamin. This and magnesium worked for me 100%. Along the way I discovered that nightshades would cause me tremendous pain, lasting weeks. While I'm sure not everyone's nerve/muscle pains are caused by the same things, these are easy to try, and there's nothing to lose except pain.


A spherical meteorite 10 km in diameter traveling at 20 km/s has the kinetic energy equal to the calories in 550,000,000,000,000,000 Twinkies.

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Try "Magnesium Oil" rubbed on the skin. It gets in there fast without taking a pill.


GLUTEN FREE 4/4/08. LEGUME/SOY FREE 5/15/08. YEAST FREE. CORN FREE. GRAIN FREE. DAIRY FREE. I am eating all meats, eggs, veggies, fruits, squash, nuts and seeds. I just keep getting better every day. :)

Do not let any of the advice given here substitute for good medical care. Let this forum be a catalyst for research. Find support for any post in here before you believe it to be true. Arm yourself with knowledge. Let your doctor be your assistant. Listen to their advice, but follow your own instincts as well. Miracles are within your reach. You can heal!

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