Neuropathy still after 4 months gluten-free.. help

[Lions31]

I am a first time poster....I am feeling very frustrated, I am 4 month gluten free post diagnosis via blood test and biopsy. Most of my digestive problems bloating, heartburn and occasional ‘C’ have completely resolved. However I am still having problems with tingling/numbness/pain in legs and feet. Also some occasional zapping in the head. I am taking high doses of b12 as my reading was 320 at diagnosis but is now over 1000 and also vitamin d and magnesium. Also I am df and mainly just eating unprocessed food. Although I have to eat out occasional for work and social reasons I think I have only been gluttened once in 4 months.

I have seen a neurologist who did a nerve conductor and few other tests and did not see anything wrong. Is there anything else anyone can recommend? I am 37 with two young children and was always very active so would love to think there is some light at the end of the road. Also I am meant to be running Nyc marathon next year so constant feet pain not ideal!

 

It is so frustrating when you feel like your doing everything you can but your not Improving! If people have not got any advice would be great to hear from people who had neuropathy clear up after more than four months. Did it clear up suddenly or gradually etc?

happy new year one and all and thanks for reading

 

[Ella07]

Hi,

I'm sorry to hear about your continued neuropathy but I can relate. I have celiac disease and I did get a lot better after eating gluten free, but the neuropathy did not go away completely until I went grain free. I had researched and found many stories of the same who had to be grain free to get completely better. Eating grain free fits the Paleo diet that is quite popular nowadays. There are many paleo recipes online and cookbooks available too. Google 'Danielle Walker' and 'against all grain' and you'll find her helpful blog and she has a few cookbooks. She had to go grain free to get better and started making new recipes. Also Kelly Smith at TheNourishingHome.com, and Elana's Pantry website are great resources for grain free with similar health story.

It's a major change but it's worth it to feel better, in my opinion.  Maybe you can just try going grain free for a week or two and see if it helps your neuropathy?

I sincerely hope you find some relief soon.

[cyclinglady]

  On 1/6/2018 at 9:34 PM, Lions31 said:

I am a first time poster....I am feeling very frustrated, I am 4 month gluten free post diagnosis via blood test and biopsy. Most of my digestive problems bloating, heartburn and occasional ‘C’ have completely resolved. However I am still having problems with tingling/numbness/pain in legs and feet. Also some occasional zapping in the head. I am taking high doses of b12 as my reading was 320 at diagnosis but is now over 1000 and also vitamin d and magnesium. Also I am df and mainly just eating unprocessed food. Although I have to eat out occasional for work and social reasons I think I have only been gluttened once in 4 months.

I have seen a neurologist who did a nerve conductor and few other tests and did not see anything wrong. Is there anything else anyone can recommend? I am 37 with two young children and was always very active so would love to think there is some light at the end of the road. Also I am meant to be running Nyc marathon next year so constant feet pain not ideal!

 

It is so frustrating when you feel like your doing everything you can but your not Improving! If people have not got any advice would be great to hear from people who had neuropathy clear up after more than four months. Did it clear up suddenly or gradually etc?

happy new year one and all and thanks for reading

 

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Four months in is such a short amount of time to expect healing.   Most members take a year or two.  Why?  The gluten-free diet has a steep learning curve and most people have collateral damage like your neuropathy.  Nerve damage can take the longest to heal.  

Keep up the good work!  Soon you will be running again (though I think you are crazy!). ?. I ran only 1/2 marathon once (I was 50) after doing century rides for years and a few sprint triathalons.   I told my family members to meet me at the first aid station.  On bike rides there might be one or two people at the first aid station, but what I saw was like the hospital scene from “Gone with the Wind”.  Runners were lying on the pavement with ice bags on their knees.  I vowed never to work towards a full marathon.  I just run 3.5 miles twice a week and ride my bike.  ?‍♀️

Take time to heal.  Two months after my celiac disease diagnosis, I fractured my back doing NOTHING!  So, I took a year off my bike and stopped everything except for swimming and walking.  After a year and a bone scan, I got back on my bike and started running.  Heading to the beach tomorrow!  

Be sure to get follow-up testing:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

 

Edited January 6, 2018 by cyclinglady

[Lions31]

I will try the grain free for a couple of weeks definitely can’t hurt will just pretend it’s part of a ‘dry jan’... 

cyclinglady very jealous of your beach visit it’s -15 here right now!

[cyclinglady]

  On 1/6/2018 at 10:35 PM, Lions31 said:

I will try the grain free for a couple of weeks definitely can’t hurt will just pretend it’s part of a ‘dry jan’... 

cyclinglady very jealous of your beach visit it’s -15 here right now!

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Southern California is expected to get our first big winter rain on Monday.  It may be my last ride for while.  We need it.  It should extinguish the last of the fires.  

[cristiana]

Just a thought... I had ongoing tingling etc and I think it was when I mentioned this to my gastro he added a folic acid test to my slew of bi-annual blood tests.   It turned out I was borderline normal.  

I seem to recall, too, that someone posted on this forum who had these symptoms and it was caused by too much B6.

So maybe a couple of other vitamins you could get checked out for.  As this helpful article on folic acid points out - too much or too little are problematic, so rather than self-diagnose  it is always important to have the test to see if supplementation is necessary.

http://neuropathydr.com/why-you-need-folic-acid-to-combat-peripheral-neuropathy/

 

[Ennis-TX]

  On 1/6/2018 at 9:34 PM, Lions31 said:

I am a first time poster....I am feeling very frustrated, I am 4 month gluten free post diagnosis via blood test and biopsy. Most of my digestive problems bloating, heartburn and occasional ‘C’ have completely resolved. However I am still having problems with tingling/numbness/pain in legs and feet. Also some occasional zapping in the head. I am taking high doses of b12 as my reading was 320 at diagnosis but is now over 1000 and also vitamin d and magnesium. Also I am df and mainly just eating unprocessed food. Although I have to eat out occasional for work and social reasons I think I have only been gluttened once in 4 months.

I have seen a neurologist who did a nerve conductor and few other tests and did not see anything wrong. Is there anything else anyone can recommend? I am 37 with two young children and was always very active so would love to think there is some light at the end of the road. Also I am meant to be running Nyc marathon next year so constant feet pain not ideal!

 

It is so frustrating when you feel like your doing everything you can but your not Improving! If people have not got any advice would be great to hear from people who had neuropathy clear up after more than four months. Did it clear up suddenly or gradually etc?

happy new year one and all and thanks for reading

 

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If your very active with celiac the most common deficiency issue is magnesium...it aids in the way your nerves work. Look at supplementing with magnesium citrate if you have additional constipation issues. Natural Vitality Calm is the way to go 1/4tsp starting off in a warm glass of water...up the dose over a 1-2 week period up to 2tsp if you get diarrhea or loose stools back off/split the dose in two dosings. You might be like me and have to take more then 2 full doses once in the morning and once in the evening. Other thoughts are a full B-vitamin supplement designed to help with neurological issues. Liquid Health Neurological support is best here in combination with the stress and energy formula from them 1tbsp each 3 times a day.

If you suffered brain and nerve damage from gluten ataxia like me....your going to live with it for years before healing I am about 5 years into this disease. every little slip up I have had will effect my nerves before anything else and take months to come back. Nerve damage they say can take decades to heal. After my last slip up before the xmas holidays messed me up so bad for Christmas I was getting stuff out of the oven and handling hot pans bare handed due to not noticing the hot pans.....still trying to get those burn calluses off.

[Jmg]

  On 1/6/2018 at 9:34 PM, Lions31 said:

I am a first time poster....I am feeling very frustrated, I am 4 month gluten free post diagnosis via blood test and biopsy. Most of my digestive problems bloating, heartburn and occasional ‘C’ have completely resolved. However I am still having problems with tingling/numbness/pain in legs and feet. Also some occasional zapping in the head. I am taking high doses of b12 as my reading was 320 at diagnosis but is now over 1000 and also vitamin d and magnesium. Also I am df and mainly just eating unprocessed food. Although I have to eat out occasional for work and social reasons I think I have only been gluttened once in 4 months.

I have seen a neurologist who did a nerve conductor and few other tests and did not see anything wrong. Is there anything else anyone can recommend? I am 37 with two young children and was always very active so would love to think there is some light at the end of the road. Also I am meant to be running Nyc marathon next year so constant feet pain not ideal!

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Hi and welcome  

I've just written this to another new member:

For me, again not a diagnosed celiac, the neuro symptoms are first to arrive, last to leave if I slip on the diet, almost like an early warning system. I don't know the reasons why, but that's how it seems to operate. However they weren't the first symptoms I experienced growing up, I think they took time to develop then. So if the neuropathy is gluten mediated it may be that its the last to go, and it may be that it needs a stricter approach to the diet than you've managed so far on your own.  

 You may find this of interest on gluten mediated neuropathy: Prof. Marios Hadjivassiliou http://www.acnr.co.uk/pdfs/volume2issue6/v2i6reviewart2.pdf

--

The paper notes that recovery from ataxia is excellent but can take up to a year, that's consistent with a lot of experience of neuro symptoms from users here. It also suggests that it may not be a traditional enteropathy derived imbalance that's causing this. Having said that balanced supplements and eating well cannot harm you. So maybe keep going on the diet, keep noting your responses and allow just a little longer for the neuro symptoms to go, chances are they were a long time in developing so they may take some time to leave as well the light may there but it's just a slightly longer road than you were hoping for in other words!

Best of luck to you!

Matt

 

[Lions31]

Thanks for the feed back it’s good to hear other people going through the same things. Will also order some of the b complex mentioned above. 

 

Jmg how long did it take for your neuropathy take to clear up?

Edited January 7, 2018 by Lions31

[Jmg]

  On 1/7/2018 at 8:05 PM, Lions31 said:

Thanks for the feed back it’s good to hear other people going through the same things. Will also order some of the b complex mentioned above. 

 

Jmg how long did it take for your neuropathy take to clear up?

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I'm sorry I can't put a time on it - that whole period was overwhelming, I did keep a diary during my challenge but didn't continue it post going back to gluten-free. I also was still discovering back then that some of these things were gluten related. So it was only months later when I realised I'd not had eyesight issues for awhile, or that the twitch under my eye had gone etc.  Months rather than weeks in any case. 

[GFinDC]

I've got some nerves that were stretched in my left arm after it twisted during a fall.  Lost feeling in my left hand /arm for a couple years after that.  After 5 years the feeling was mostly returned although not completely even now.  So nerves take a long time to heal.

[Lions31]

Thanks for the feed back..... One more question for those whose Neuropathy has cleared up... When getting better did it disappear suddenly or gradually and did you get more strange aches and pains as you healed? 

Sorry for all the questions just seems like i am on my own a bit my neurologist did not really know a lot about celiac and just sent me on my way saying he cant see anything wrong! 

[Ennis-TX]

  On 1/8/2018 at 5:54 PM, Lions31 said:

Thanks for the feed back..... One more question for those whose Neuropathy has cleared up... When getting better did it disappear suddenly or gradually and did you get more strange aches and pains as you healed? 

Sorry for all the questions just seems like i am on my own a bit my neurologist did not really know a lot about celiac and just sent me on my way saying he cant see anything wrong! 

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SLOW you actually do not really notice it til you think back on how you felt a few week/months ago. For me the numbness/blanking issues get worse as my antibodies go up and improve as they go down....the actual brain damage and sensitivity has gradually improved constantly it seems over the past few years. Still spikes back up with exposure and antibody spikes. Oddly those of us with these issues find that we are hyper sensitive to below the 20ppm range the FDA set for gluten free, as the start of the antibody ramp up is triggered at any gluten period. Not just a gut issue.

I reference my last exposure to a 15-16ppm lab tested exposure to gluten in some hemp I got...It took weeks of the symptoms slowly ramping up before I noticed it and did testing to find the culprit. Technically gluten free under 20ppm so nothing I can do about it....just throw it out and not eat it again. Straight up gluten is very noticeable but CC issues can be a real pain to narrow down.

[Serafina57]

I was diagnosed with both Celiac Disease and Gluten Ataxia in Jan 2009. I was bed bound, cognitive problems, neuropathy etc...I never had gut issues. My story was featured in a "Living Without"(now Gluten Free and More magazine) article in April/May 2014 issues. "Gluten and Your Brain" is the article name. 

https://www.glutenfreeandmore.com/issues/4_31/gluten-and-your-brain-3666-1.html?page=4

It took me over six months to recover back to my new "normal". My Gastro finally put me on Rx probiotics. That seemed to really turn the tide for me. Because I was over 50 when I was diagnosed, I won't ever fully recover. I'm actually on disability because of my ongoing brain problems. I had three different Neuro-Physic Evals (brain function testing). I was tested before my diagnosis, then nine months post gluten-free diet, then again when I was inadvertently glutened. The results were remarkable. Before diagnosis I was testing in the 9-12% (for my age, education and IQ). Nine months post gluten-free, I tested in the 60+%. Then when glutened, back down to the 10% range. 

I now stick to a gluten-free, Dairy Free and (added)Sugar Free diet. Essentially a anti-inflammatory diet. I still have neuropathy, but it's managed with diet and Clonazapam. If I eat sugar, my neuropathy makes me numb/hurt from toes to mid shin. Not to mention my cognitive issues. Yikes. 

Marios Hadjivassiliou, MD is really the medical professional who's done the research on Gluten Ataxia. My gastro called Dr Hadjivassiliou to get help with a prognosis for me. That's when I heard the news that I would not likely fully recover because of my age.

This is a life of managing symptoms with diet and medications. I work very hard to take care of my health. I'm now able to walk mostly normal. I use a treadmill for exercise. I hold on for dear life, but I do it!

Take care of yourselves,

Julie 

[Jmg]

Hi Serafina,

I found your post fascinating. I've often thought of pursuing a meeting with Professor Hadjivassilou, you may be interested in the article by him I posted above in my first reply. It's one of the best overviews I've found of gluten's effect on the brain. 

One thing which struck me was this:

  On 1/8/2018 at 8:04 PM, Serafina57 said:

I now stick to a gluten-free, Dairy Free and (added)Sugar Free diet. Essentially a anti-inflammatory diet. I still have neuropathy, but it's managed with diet and Clonazapam. If I eat sugar, my neuropathy makes me numb/hurt from toes to mid shin. Not to mention my cognitive issues. Yikes. 

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Despite being gluten-free for a few years now Ive only recently completely excluded dairy and I'm noticing a massive difference, it's freaking me out to be honest as I'm realising how big an effect its had on me. I now feel like my body is more sensitive to non dairy gd sugary foods than it was, so I'm very interested in learning more about how you came about excluding added sugar. Does that diet allow you to eat naturally sweet things like fruits etc? I have a sweet tooth and am wondering if I could cope with losing what sweet treats are left in my life now the dairy has gone the same way as the gluten!

Matt

[Chris H]

Hello I’m just messaging to see how your neuropathy is going? Have you had gradual improvements as the years gone on? Reading your post, you are having really similar symptoms to me. I’ve been 9 months gluten free now, but have had a lot of slip ups. Big improvement at the start, then has been a roller coaster since. Dairy fires my nerves up, so does corn, and obviously gluten, sugar. Now I’m thinking rice might fire up my nerves. Not leaving me a lot of food to eat 

[Ennis-TX]

  On 4/10/2019 at 11:00 AM, Chris H said:

Hello I’m just messaging to see how your neuropathy is going? Have you had gradual improvements as the years gone on? Reading your post, you are having really similar symptoms to me. I’ve been 9 months gluten free now, but have had a lot of slip ups. Big improvement at the start, then has been a roller coaster since. Dairy fires my nerves up, so does corn, and obviously gluten, sugar. Now I’m thinking rice might fire up my nerves. Not leaving me a lot of food to eat 

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Look up Paleo Diet, and since your mention sugar, I would try the Keto version with no carbs. Ketosummit has a bunch of recipes. Just use coconut oil in place of anything for butter or ghee, and full fat coconut milk canned in place of heavy cream recipes. I also have some simple meals on my blog here. 

Neuropathy, if it is caused by nerve damage (gluten ataxia) then you will have years of slow healing. If it is just a reaction or certain foods/chemicals interfere with nerve issues then a few months it will clear up

[Chris H]

  On 4/10/2019 at 12:38 PM, Ennis_TX said:

Look up Paleo Diet, and since your mention sugar, I would try the Keto version with no carbs. Ketosummit has a bunch of recipes. Just use coconut oil in place of anything for butter or ghee, and full fat coconut milk canned in place of heavy cream recipes. I also have some simple meals on my blog here. 

Neuropathy, if it is caused by nerve damage (gluten ataxia) then you will have years of slow healing. If it is just a reaction or certain foods/chemicals interfere with nerve issues then a few months it will clear up

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So does that mean quinoa as well? I work in construction, 10 hours a day, which is obviously very uncomfortable with my sore feet, but it also means I need to have carbs to get through a day, as my work is very labour intensive. I’ve decided to cut out rice for a week and see if there is any improvement. Thanks for your help, any more advice is appreciated.

[Ennis-TX]

  On 4/11/2019 at 9:05 AM, Chris H said:

So does that mean quinoa as well? I work in construction, 10 hours a day, which is obviously very uncomfortable with my sore feet, but it also means I need to have carbs to get through a day, as my work is very labour intensive. I’ve decided to cut out rice for a week and see if there is any improvement. Thanks for your help, any more advice is appreciated.

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If your a carby and want to stick to it use sweet potatoes for carbs.  Grain-free at first to see how much better you feel. But you do not need carbs at all, the human body is designed to use fat or carbs for fuel on rotation. Our ancestors did not have access to carbs during winters or off seasons, they would be on a fat/protein diet of nuts, meats, and some greens they could find. The ketogenic diet makes the body use fat for fuel instead of carbs. Should I get into the science of how the body does this?

I walk, bike, and work out racking up 25-30miles a day on my fitbit, and lift weights. I burn 5000-6000 calories a day. I do not eat grains, dairy, soy, peanuts, or even carbs. I just live on eggs, nuts, seeds, meats, and leafy greens. Simple omelets, egg dishes, etc. I will admit I eat a higher ratio of protein in a effort to body build. But most people go with stuff bunless burgers, sheet pan meals, steak and salad, steak and egg, salmon, grilled veggies, roast, deviled eggs, basically meats and greens.

There is a transition where it feels like you have the flu for a few days as your body shifts fuel sources, ketones can help with this. But most find they are alot more energized on the keto diet. 

For info on the diet look up stuff by Thomas Delauer ketogenic girl, ketoologist,  and Ketosummit has a ton of recipes.
https://www.ketogenicgirl.com/?
https://www.theketologist.com/
https://www.thomasdelauer.com/

[GFinDC]

Hi Chris,

Have you looked into diabetic nerve pain and also plantar fascitis?  Both of those conditions can cause foot pain.  The diabetic nueropathy would react to carby foods like rice and sugar though.

B-12 is often suggested for nerve problems, but other B vitamins can help too.

[Chris H]

  On 4/11/2019 at 10:43 AM, GFinDC said:

Hi Chris,

Have you looked into diabetic nerve pain and also plantar fascitis?  Both of those conditions can cause foot pain.  The diabetic nueropathy would react to carby foods like rice and sugar though.

B-12 is often suggested for nerve problems, but other B vitamins can help too.

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I’ve had exhaustive tests for both PF and diabetes, as that’s what the doctors thought it was. I’ve spent about $30,000 on trying to get a diagnosis on my feet, and I finally landed on gluten ataxia. When I took gluten out of my diet, for the first time in years I actually had pain relief. I also had all these very hardcore withdrawal symptoms, dizziness, fatigue, weak neck, lump in throat, balance problems. All neurological, they finally subsided and the pain in the feet was still better, but I’ve been a bit up and down since. I’ve become a lot more sensitive to certain foods now, I’m gluten free, dairy free and corn free, but I still feel like I’m reacting to something. It’s hard

[squirmingitch]

Hey Chris, have you been tested for rheumatoid arthritis? Mine all seemed to start with affecting my feet. Just a thought of something to look into.

Dried beans, sorted & washed & cooked for carbs. Home made re-fried beans. Also, protein makes a big difference & will cause you to depend less on carbs.

[cyclinglady]

  On 4/11/2019 at 9:05 AM, Chris H said:

So does that mean quinoa as well? I work in construction, 10 hours a day, which is obviously very uncomfortable with my sore feet, but it also means I need to have carbs to get through a day, as my work is very labour intensive. 

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Maybe a drug reaction?  Ever take a fluoroquinolone (a type of antibiotic) in the last year?  

https://www.fda.gov/downloads/Drugs/DrugSafety/UCM365078.pdf

 

  On 4/11/2019 at 1:57 PM, cyclinglady said:

Maybe a drug reaction?  Ever take a fluoroquinolone (a type of antibiotic) in the last year?  

https://www.fda.gov/downloads/Drugs/DrugSafety/UCM365078.pdf

Get your B12 checked.  It is a simple and cheap blood test.  

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[GFinDC]

  On 4/11/2019 at 10:58 AM, Chris H said:

I’ve had exhaustive tests for both PF and diabetes, as that’s what the doctors thought it was. I’ve spent about $30,000 on trying to get a diagnosis on my feet, and I finally landed on gluten ataxia. When I took gluten out of my diet, for the first time in years I actually had pain relief. I also had all these very hardcore withdrawal symptoms, dizziness, fatigue, weak neck, lump in throat, balance problems. All neurological, they finally subsided and the pain in the feet was still better, but I’ve been a bit up and down since. I’ve become a lot more sensitive to certain foods now, I’m gluten free, dairy free and corn free, but I still feel like I’m reacting to something. It’s hard

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That's good they ruled out the T-2 diabetes and plantar fascitis Chris.  That's 2 less things to worry about!

Celiac disease can affect the nerves directly.  Some people's bodies will attack the nerve cells instead of or in addition to the gut.   In some cases, the nerve attack is on cells in the brain and is called gluten ataxia.  Gluten ataxia can cause problems walking and balancing.

An elimination diet is a good way to discover problematic foods.  There are few legitimate medical tests for food intolerances but our bodies can let us know about problem foods.

Edited April 11, 2019 by GFinDC

[Chris H]

Sadly my nerve pain has gone back to where it was 9 months ago. With really slight numbness in my left toe. Since quitting gluten I haven’t felt the numbing of my toe. I’m getting a food intolerance test next Thursday. My diet is so strict I don’t know where I’m going wrong. But something is definitely affecting my nerves, not as bad as gluten does but it definitely affects them. I’m hoping it’s just a setback. Feel like I’m so close but so far away.