Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

rickops

Peripheral Neuropathy

Recommended Posts

Hi, this is my first post on this forum, but I've been reading the posts all day. Hopefully someone can help...

My daughter just turned 18 last month. This summer she developed a motor neuropathy in both feet (they were both unable to be raised), and her right hand (extreme weakness and uncoordination, and atrophy of the muscle between thumb and index finger). These symptoms manifested themselves over a period of about 1 month. We have since been to neurologists, and even to the Mayo Clinic in Minnesota. She has had exhaustive neurological testing, but the tests revealed no evidence of the obvious (and scary) diseases which present this way, ie. ALS, MS, cancer, etc. Even the Mayo doctors are baffled.

Over the intervening 4 months, she has shown significant improvement in foot strength, and has regained some right hand coordination also. In light of our doctors' consternation, my wife and I have been doing extensive research on the web, and have really focused on celiac disease. Peripheral neuropathy is listed as a more rare symptom of celiac disease, but always with SENSORY neuropathy, not just MOTOR. Stephanie has no sensory loss at all, or burning/tingling, etc.

For history, my mother had rheumatoid arthritis, and I have Hashimoto's thyroiditis. Steph had severe recurrent stomach aches as a small child, and was diagnosed with IBS. She also has had SEVEN broken arms over her first 14 years. No doctor could ever find a reason for the abnormal amount of fractures, but no one (even the gastroenterologist) suggested Ciliac.

From what I've read, she seems to be a candidate for celiac disease or gluten intolerance, but I've yet to see a motor-only peripheral neuropathy. Has anyone ever seen this type of neuropathy associated with advanced ciliac disease?

We are all at our wit's end, and desperately looking for answers. Any help would be very much appreciated. Thanks! Sorry this is so long...

Rickops

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Rickops:

I sense your grave concern in your post. I have celiac, but my children do not. I have often posted that I have great admiration for parents will illl children. My heart goes out to you.

With your family history, there is a strong probabily that there may be a celiac connection.

I do not have much knowledge on the subject for you but others that have posted here do. So I will defer to them. Often this site is fairly quiet on the weekend, so please be patient untill more experience shows up.

Have you done a search here? I hope that you get your answers quickly.

Lisa


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

Share this post


Link to post
Share on other sites

The research and investigation into neurological celiac conditions is still in its infancy. I have mild sensory and motor symptoms and a diagnosis of celiac as well as autoimmune thyroiditis. My mother,her mother and sister all have/had rheumatoid arthritis. I think a return trip to the Mayo is in order, and specifically request the screening serological tests (endomysial antibody;tissue transglutaminase antibody;anti gliadin antibodies) and a referral to the GI division, but the Neuro division needs to keep involved! Excellent detective work on your part. I hope you can get some investigation down this path soon. Please keep us posted. I will check for recent literature re: motor neuropathies and celiac disease.


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

Share this post


Link to post
Share on other sites

There are 5 articles listed in the National Library of Medicine website. Go to www.pubmed.gov and type in celiac disease and motor neuropathy. They are listed newest to oldest, which you can see is Jan '07 from 1968! Only 5 articles in the world literature shows how new this concept is to neurology.

Neurologists are not much aware of the potential of celiac conditions in their world.....at least not here....not yet. Maybe Rochester is different, but I wouldn't wait on them to think of this.

If I find other resources, I'll post. Sorry I haven't figured out how to make a quick link here!!!


Iron deficiency without anemia, unexplained weight loss 2/2003

Positive celiac biopsy 4/2003

Autoimmune thyroiditis 8/2005

Gluten Free Since 2003

Share this post


Link to post
Share on other sites

I have neuropathy caused by celiac disease. Mine is B12 deficiency based, we think, any ways. I have small fiber neuropathy in my legs, which didn't show up with a doppler test and the doc didn't really say the type in my arms and upper torso, yet it did show up on the doppler test. There are many, many different feelings a neuropathy patient can feel--sometimes, no 2 are alike.

http://neurotalk.psychcentral.com/index.php This is a very good site to ask medical questions, in forum form. The people there are very experienced with neuropathies. They are the patients, know which test you should ask for--I have learned so much there.

Good luck to your daughter. If she is gluten intolerant, at her age, the nerves may heal once she goes gluten-free, some people do.


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!

Share this post


Link to post
Share on other sites

My husband developed his neuropathy AFTER he went gluten-free


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

Share this post


Link to post
Share on other sites
Hi, this is my first post on this forum, but I've been reading the posts all day. Hopefully someone can help...

My daughter just turned 18 last month. This summer she developed a motor neuropathy in both feet (they were both unable to be raised), and her right hand (extreme weakness and uncoordination, and atrophy of the muscle between thumb and index finger). These symptoms manifested themselves over a period of about 1 month. We have since been to neurologists, and even to the Mayo Clinic in Minnesota. She has had exhaustive neurological testing, but the tests revealed no evidence of the obvious (and scary) diseases which present this way, ie. ALS, MS, cancer, etc. Even the Mayo doctors are baffled.

Over the intervening 4 months, she has shown significant improvement in foot strength, and has regained some right hand coordination also. In light of our doctors' consternation, my wife and I have been doing extensive research on the web, and have really focused on celiac disease. Peripheral neuropathy is listed as a more rare symptom of celiac disease, but always with SENSORY neuropathy, not just MOTOR. Stephanie has no sensory loss at all, or burning/tingling, etc.

Wow. Scary. I hope all turns out OK. I had stomach issues and fairly severe sensory neuropathy, as well as insomnia. Been to Dr's DOZENS of times over 10-12 years (my symptoms started around 19). I guess it wouldn't suprize me if there was a connection between sensory and motor neuropathy, and in light of her previous Diagnosis of IBS, I'd suspect celiac too.

Is she still having stomach issues? I've been _mostly_ gluten free for about 6 weeks now. I have seen dramatic, but not perfect, improvement in my stomach issues, and sleep like a log now. Unfortunately, my nerve issues don't seem to be improving as quickly. Some days I'm convinced it's improving, some days I'm not. I think the painful periods are perhaps less frequent, buy may have actually increased in severity. It get's bad enough that I have trouble putting any weight on my feet, and my feet don't really "work" sometimes. But it tends to go away fairly quickly.

I'd suggest you test SOON for celiacs.


Celiac - Gluten Free since Late December 2006

Positive Dietary response, biopsy, Enterolab

Lactose intolerant - dietary response test only

Share this post


Link to post
Share on other sites

I have peripheral Neuropathy. I also have Hashimotos Thyroid and Pernicious Anaemia. After I started my B12 shots last year the PN would improve for afew days , worsen, then improve again after the shot. PN can be a symptom of PA , Diabetes and Celiac and other conditions. Not sure that I can say much more but be aware that PN can start when B12 is < 350 which is technically still in range. You don't need a B12 reading <100 to experience nerve damage - so be aware of that. Some research into B12 being used for PN - so something to check as well.


Diagnosed May 2006 - Hashimotos Thyroid after being diagnosed in 1977 and told it didn't matter.

Diagnosed June 2006 with adrenal insufficiency.

Diagnosed June 2006 as Gluten Intolerant after I failed the Challenge Diet. Negative blood test.No biopsy.

Diagnosed June 2006 as B12 low. Needed weekly injections for a year.Still have them every 2 weeks.

Trialled Dairy Free Diet and reacted positively to that challenge in January 07.

News Flash! Coeliac Genetic Testing done April 08 . DQ2 Positive !

Diagnosed July 2010 FODMAP. Limits on Fructose, lactose, polyols, fructans. NO ONION! But I can have hard cheese, butter and cream again!!!

Share this post


Link to post
Share on other sites

No one can be sure when their neuropathy began. Sometimes the symptoms are so slight, you do not realize it. The doctor tells me my began with carpal tunnel, I was diagnosed with it over 8 years ago, yet had trouble with my wrists long before that. A few months after the diagnosis of carpal tunnel, my toes started going numb. My hips were very involved for a long time, so painful that steps were next to impossible without help at times. Then I moved here to the island and started walking the beaches. Usually I would walk too far and then have no idea how I would get back to the car! I started taking B12, in the beginning 1000mcg, probably 2 yrs ago. At that time, the neuropathy also effects other areas. If my tummy was upset and I would use a heating pad, there were times I would thing the pad wasn't working because I could not feel the heat. November of 2005, I started taking 2400mcg of liquid B12 daily and still do. I can't walk far on the beach any more, I rarely go to the mall (men would love shopping with me, I do not last long :P )a days work sometimes makes my feet feel like walking on broken bones. It has effected my neck and shoulders, yet nothing I can't deal with as of yet. Of course, I do feel I have a very high threshold for pain. I am not on any meds as of yet and want to stay away from them for as long as I can. I work fulltime, in a doctor's office. ;) He is an optomitrist and thinks he knows what I should do, yet he doesn't understand neuropathy, nor does he understand celiac disease. Go figure huh?


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!

Share this post


Link to post
Share on other sites
From what I've read, she seems to be a candidate for celiac disease or gluten intolerance, but I've yet to see a motor-only peripheral neuropathy. Has anyone ever seen this type of neuropathy associated with advanced ciliac disease?

We are all at our wit's end, and desperately looking for answers. Any help would be very much appreciated. Thanks! Sorry this is so long...

Rickops

My celiac disease began with motor difficulties and stayed predominately motor related for over 20 years. It began with 'foot drop' and progressed by my teens into ataxia. I grew up thinking everyone felt like they were falling over and did not know that foot drop wasn't normal until a surgeon discovered it when they operated on my feet at age 11 because they were clubbed. I also suffered greatly from depression usually it seemed to be related to my periods so it was blown off as PMS. The only GI symptoms I had at that time were occasional severe constipation and a tummy that growled and gassed excessively. Everyone else seemed to have a tummy that growled when they were hungry mine growled when I ate.

Have they done an MRI? The reason I ask is because for many of us with motor and neuro problems when a brain MRI is done they often find something that US doctor call UBO's (unidentified bright objects) clueless doctors here think they are meaningless, on the other side of the pond they are diagnostic of celiac. My UBO's were predominately in the part of my brain that controls motor function but of course US docs just blew them off. If when the UBO's were first found, five years before celiac was finally diagnosed, I might have had a bit more of a neuro recovery than I have.


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)

Share this post


Link to post
Share on other sites

I think that you are definitely doing the right thing by checking up on celiac disease. Mine showed up as the disease progressed. My left hand used to twitch, and my pinky and ring finger would go numb. I would also have muscle twitches in my right leg. As a child, I used to have severe pain in my legs, for which doctors could find no cause. I suspect it was the celiac disease. Today it only really kicks in if I accidentally ingest gluten. When that happens, my hand goes numb and twitches, along with my right leg. I also have intermittent pain in both arms and both legs. You should definitely get your daughter tested as soon as you can. It might put an end to all of this confusion, and then you can start the recovery process. Good luck,

-Brian


Celiac Sprue

Multiple Food Allergies

Diagnosed June 2006

Stopped Eating June 2007

IV Nutrition: 6/27/07 - Present

Share this post


Link to post
Share on other sites

Hi

I stopped eating gluten after my feet "disappeared" because of gluten.

Also problems reading, and lots of typos on gluten. I thought the keyboard was malfunctioning.

There are really lots of articles in www.pubmed.com now, but they do not all show up with the search word celiac, they did not index them that way.

Somehow I got more hits

http://www.ncbi.nlm.nih.gov/entrez/query.f...=ExternalSearch

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

Share this post


Link to post
Share on other sites

You all have been very generous with your time, support and information. I do hope that rickops returns to recieve all this great information.

My heart went out to him and his wife on their quest to find what is wrong with their daughter.

Another testimony here for the good people on this site.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

Share this post


Link to post
Share on other sites

Thanks to all of you who took the time to offer anecdotes and advice. You have been a tremendous encouragement to my wife and daughter and I. Nora, I visited the site you listed, and printed off a number of the articles to show to our doctor.

I'm not convinced that we need to go back to the Mayo Clinic at this time. I think we can do the tests you folks recommended from here. We are blessed to have a doctor who is open to check on anything he can to help our daughter. The more I read your personal stories, reference articles and advice, the more I become convinced that Stephanie's neuropathy is caused by celiac disease. I think she has had it for a long time. We have immediately gone on a gluten free diet as a family, and are looking into getting some liquid vitamin and mineral supplements for our daughter. We will contact our doctor next week to share our (and your!) research with him. Hopefully do some tests for celiac disease soon.

I will keep you posted as to Stephanie's progress. Wouldn't it be something if you, in your collective wisdom solved Steph's problem, when the famous Mayo Clinic couldn't?

Thank all of you so much for your concern and input. We'll stay in touch.

Rickops

Share this post


Link to post
Share on other sites
Hi, this is my first post on this forum, but I've been reading the posts all day. Hopefully someone can help...

My daughter just turned 18 last month. This summer she developed a motor neuropathy in both feet (they were both unable to be raised), and her right hand (extreme weakness and uncoordination, and atrophy of the muscle between thumb and index finger). These symptoms manifested themselves over a period of about 1 month. We have since been to neurologists, and even to the Mayo Clinic in Minnesota. She has had exhaustive neurological testing, but the tests revealed no evidence of the obvious (and scary) diseases which present this way, ie. ALS, MS, cancer, etc. Even the Mayo doctors are baffled.

Over the intervening 4 months, she has shown significant improvement in foot strength, and has regained some right hand coordination also. In light of our doctors' consternation, my wife and I have been doing extensive research on the web, and have really focused on celiac disease. Peripheral neuropathy is listed as a more rare symptom of celiac disease, but always with SENSORY neuropathy, not just MOTOR. Stephanie has no sensory loss at all, or burning/tingling, etc.

For history, my mother had rheumatoid arthritis, and I have Hashimoto's thyroiditis. Steph had severe recurrent stomach aches as a small child, and was diagnosed with IBS. She also has had SEVEN broken arms over her first 14 years. No doctor could ever find a reason for the abnormal amount of fractures, but no one (even the gastroenterologist) suggested Ciliac.

From what I've read, she seems to be a candidate for celiac disease or gluten intolerance, but I've yet to see a motor-only peripheral neuropathy. Has anyone ever seen this type of neuropathy associated with advanced ciliac disease?

We are all at our wit's end, and desperately looking for answers. Any help would be very much appreciated. Thanks! Sorry this is so long...

Rickops


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

Share this post


Link to post
Share on other sites

Hi there,

I was diagnosed April 2006 with celiac disease. I just bought the "Living Without Winter 2007 magazine issue" and it talks about a man who lost all kinds of motor functions..ended up in a wheelchair and aftr like his 4th neurologist they dx'd him with celiac disease. He has improved. **Oh, yeah, my brothers neighbors daughter is ~4?y/o and what you explain about you daughter is exactly how this little girl was. She was finally dx'd with celiac disease and is abble to walk...

It is very important to get her diagnosed ASAP so you can get her functioning again and before permanent damage is done. I do not know if it permanently damages children, but in adults the damage is done and you just keep it from getting worse.

I just google everything b/c I have peripheral neuropathy and severe ataxia. I am on my 4th neurologist and I am crossing my fingers he is "it"! I have been dealing with this for 11/2 yrs. now and all I have been told is "Post traumatic stress disorder"!! I am a very normal, plain married mom of 3 and was working as RN in a nearby hospital. Nothing exciting...I mention celiac disease neuro disorders and the doc's dismiss me.

Good Luck!

Jacqui


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

Share this post


Link to post
Share on other sites
My celiac disease began with motor difficulties and stayed predominately motor related for over 20 years. It began with 'foot drop' and progressed by my teens into ataxia. I grew up thinking everyone felt like they were falling over and did not know that foot drop wasn't normal until a surgeon discovered it when they operated on my feet at age 11 because they were clubbed. I also suffered greatly from depression usually it seemed to be related to my periods so it was blown off as PMS. The only GI symptoms I had at that time were occasional severe constipation and a tummy that growled and gassed excessively. Everyone else seemed to have a tummy that growled when they were hungry mine growled when I ate.

Have they done an MRI? The reason I ask is because for many of us with motor and neuro problems when a brain MRI is done they often find something that US doctor call UBO's (unidentified bright objects) clueless doctors here think they are meaningless, on the other side of the pond they are diagnostic of celiac. My UBO's were predominately in the part of my brain that controls motor function but of course US docs just blew them off. If when the UBO's were first found, five years before celiac was finally diagnosed, I might have had a bit more of a neuro recovery than I have.


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

Share this post


Link to post
Share on other sites

Hello,

I too have been dealing with neuro disorders from celiac disease. Well, none of my 4 neuro doc's have said it is from celiac disease, all they say is stress and one went as far as post traumatic stress disorder!! I have a very boring, basic life. Married, 3 kids and was working as an RN.

Friday, Labor Day weekend 2005 I woke up walking like a drunk, I had been dealing with memory problems for ~1 year, fatigue for 3 years and ataxia and peripheral neuropathy during all 3 pregnancies, severe fatigue (I slept from Sept. to ~March 20+hrs), I think I may have had small siezures in Dec. 2005. I thought we had an earthquake which it was not (I live just east of Sacramento in Antelope), rightsided facial numbness that comes and goes, light sensitivity and so many other symptoms. Oh, and I was just dx'd with insomnia too. My doc said it was stress r/t working in the ICU. Take an anti-depressant... A year and a half later that is what he still says and to me I am probably the leased stressed I have been in my whole life. I'm bored of being home b/c I can't drive either. I had to go on permanent leave from my job ~8 months after being on medical leave for the balance problem.

My question is how do you find a neurologist that has a clue about celiac disease?

My last neurologist said I had bright spots in a part of my brain that according to the Intern at Stanford "Is normal to have spots in that part of the brain". After reading your article I just had to reply.

Still searching....

Jacqui

<_<


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

Share this post


Link to post
Share on other sites
Thanks to all of you who took the time to offer anecdotes and advice. You have been a tremendous encouragement to my wife and daughter and I. Nora, I visited the site you listed, and printed off a number of the articles to show to our doctor.

I'm not convinced that we need to go back to the Mayo Clinic at this time. I think we can do the tests you folks recommended from here. We are blessed to have a doctor who is open to check on anything he can to help our daughter. The more I read your personal stories, reference articles and advice, the more I become convinced that Stephanie's neuropathy is caused by celiac disease. I think she has had it for a long time. We have immediately gone on a gluten free diet as a family, and are looking into getting some liquid vitamin and mineral supplements for our daughter. We will contact our doctor next week to share our (and your!) research with him. Hopefully do some tests for celiac disease soon.

I will keep you posted as to Stephanie's progress. Wouldn't it be something if you, in your collective wisdom solved Steph's problem, when the famous Mayo Clinic couldn't?

Thank all of you so much for your concern and input. We'll stay in touch.

Rickops

Godspeed to you and you wife for answers.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

Share this post


Link to post
Share on other sites
Wouldn't it be something if you, in your collective wisdom solved Steph's problem, when the famous Mayo Clinic couldn't?

Thank all of you so much for your concern and input. We'll stay in touch.

Rickops

Sadly, I don't think many of us would be suprized. Many people here have stories of years and years of different symptoms, dozens of doctors, etc. I had my issues for 10-12 years, and discovered the disease after going on the South Beach Diet! Quite by accident.

Geoff


Celiac - Gluten Free since Late December 2006

Positive Dietary response, biopsy, Enterolab

Lactose intolerant - dietary response test only

Share this post


Link to post
Share on other sites

Also, looking at all the broken bones, it looks like your daughter may already have developed osteoporosis. It is not uncommon for even children suffering from celiac disease to have it. I suggest that when you do the testing, you get a bone density scan done as well.

By the way, if you go on the gluten-free diet BEFORE you do the celiac disease testing, it is very likely that the tests will be negative, even if celiac disease is the cause of all the trouble. Steph needs to keep eating gluten until after the testing is finished to be valid.

Of course, you can just go on the diet and forget about testing, it is your choice. Once you go on the diet you really can't test any more, without having to go back to eating gluten for several months, risking your daughter to get severely ill again.

On the other hand, another option is to go gluten-free now, and test with Enterolab if you can afford it. You don't have to be consuming gluten for those tests to be valid. Just be aware that it is new science, and most doctors will not acknowledge it's validity yet.

I hope everything goes well for your family!


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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

Share this post


Link to post
Share on other sites

Another thing is, those with neuropathy may well be DQ1, as Dr. Hadjivassiliou pointed out in several articles.

I tested negative for DQ2 or DQ8. Culd be DQ1.

If you find his patent application there is some more on it too, and find his articles on pubmed.

There are two entire forums for peripheral neuropathy caused by gluten sensitivity, one braintalk and on neurotalk. Someone else gave the link to one of the forums earlier.

On these forums there are collections of articles, and also some collections on DQ types, and several are DQ1 and do not test with villous atrophy.

If you have gone gluten-free, the blood tests will probably be of no use. Mine were negative, bu the way, and biopsy too. Daughter has an official diagnosis despite of negative blood tests and bipsy, and it is strict in this country. She was so symptomatic.

The only thing I tested positive to, is IgG foodtest , yorktest, and I was positive to yeast, kiwi, less to soy and various beans and molluscs. Don't know what that means. That was after 9 months off gluten and dairy.

nora


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

Share this post


Link to post
Share on other sites
Hi, this is my first post on this forum, but I've been reading the posts all day. Hopefully someone can help...

My daughter just turned 18 last month. This summer she developed a motor neuropathy in both feet (they were both unable to be raised), and her right hand (extreme weakness and uncoordination, and atrophy of the muscle between thumb and index finger). These symptoms manifested themselves over a period of about 1 month. We have since been to neurologists, and even to the Mayo Clinic in Minnesota. She has had exhaustive neurological testing, but the tests revealed no evidence of the obvious (and scary) diseases which present this way, ie. ALS, MS, cancer, etc. Even the Mayo doctors are baffled.

Over the intervening 4 months, she has shown significant improvement in foot strength, and has regained some right hand coordination also. In light of our doctors' consternation, my wife and I have been doing extensive research on the web, and have really focused on celiac disease. Peripheral neuropathy is listed as a more rare symptom of celiac disease, but always with SENSORY neuropathy, not just MOTOR. Stephanie has no sensory loss at all, or burning/tingling, etc.

For history, my mother had rheumatoid arthritis, and I have Hashimoto's thyroiditis. Steph had severe recurrent stomach aches as a small child, and was diagnosed with IBS. She also has had SEVEN broken arms over her first 14 years. No doctor could ever find a reason for the abnormal amount of fractures, but no one (even the gastroenterologist) suggested Ciliac.

From what I've read, she seems to be a candidate for celiac disease or gluten intolerance, but I've yet to see a motor-only peripheral neuropathy. Has anyone ever seen this type of neuropathy associated with advanced ciliac disease?

We are all at our wit's end, and desperately looking for answers. Any help would be very much appreciated. Thanks! Sorry this is so long...

Rickops

Share this post


Link to post
Share on other sites

You might want to get your daughter in to see a good chiropractor...as there could be spinal involvement...I know in my case, the last time I had an episode (glutening) I had to have my mid and low back adjusted a couple of times through my recovery...took two weeks before I was back to normal...whenever I eat anything to which I'm allergic or intolerant, I find chiropractic care helps speed my recovery...doesn't help with the initial cramps, bloat and diarrhea, but it helps tremendously with the recovery....certainly spinal pressure on the low back could relate to the leg and foot problems...certainly worth going for a course of treatment and see what the results are...

Share this post


Link to post
Share on other sites