Neurological symptoms post gluten free diet

[Hummingbird]

Hi all. I'm new here even though I've poured through the forums for the last year (since being diagnosed with celiac) looking for helpful hints, similar stories, etc.  It's been invaluable, and I thank you all for that.  I've finally decided to join and post because my situation seems to be outside a search box entry, and I need some advice.

I'll try to make this as concise as possible:

I was diagnosed last July after going in for a blood test.  I specifically asked for the test because a family member was positive and I was developing weird symptoms. The top of my left toe was numb and I was getting tingling in my face.  The test came back positive. Since then, I have another test after 6 mo of gluten free diet and the test was positive but the numbers were lower.  I also had an endoscopy 6 mo after being gluten free (I know I know, I should have gotten it right away, but I was scared of how invasive it is!) and it showed that things were looking good but that I had gastritis. She said I still have celiac diagnosis.

When I first went off gluten, I went through horrible withdraws for weeks.  Motion sickness, fatigue, headache, irritability...it was awful.  But then...after a few weeks...Oh, my heavens I felt like a superhero. Energy, clarity of mind, groundedness, happiness, no more anxiety!  It was like a dream. I was like, "is this how everyone else has been living this WHOLE time????"  It was wonderful.  About a month later I got cross contaminated from something and things began to unravel. The glutening was enough to make me almost quit the diet. I got through it, but then started cycling through symptoms every couple of weeks - depression, anxiety, joint pain, head rushes, vertigo, heart palpitations, hypoglycemic type feelings after eating... it was weird, but I was still committed to getting through. 

Flash forward to the last 6 mo. I seem to be getting all the signs of MS, but my MRI's are all clear except one small white spot they said they weren't worried about. I'm getting a follow up tomorrow to see if anything has changed. It all started on the right side of my body - Buzzing in hands, feet, arms, numbness inside my finger tips, pressure on my arms and legs like something is there, and burning and tingling in my face. Now it's crossed over to the lefyt side.  I do have a herniated disc in my lower back that they're about to operate on (so much for invasiveness right?!)  but it's on the wrong side from where this all started.  My EEG's were normal which makes zero sense since the top of my toe is numb (I have a follow up with a new neurologist for a second opinion in a couple weeks). 

Last few notes - They gave me gabopentin and it seemed to make it worse so I went off it.  I have had a few instances over the years where I can't sense the correct cool temperature of water (it feels warm) with my fingers and this recently happened again.  Stress seems to make the buzzing more intense.

My whole family has gone gluten free in the house since day 1, so I don't think I'm being contaminated---but even if I was, wouldn't this be getting better after going off all the gluten I had been eating instead of getting markedly worse after going completely cold turkey?

So frustrated.  Going through the social issues of being gluten free was enough, but I was so ready to feel healthy. I was so excited I had an answer. And now everything is worse.  Anyway... Ringing any bells? Any advice?  Thanks

[trents]

Fact is, very few celiacs who are making an honest effort to eat gluten-free are actually managing to do so.

Open Original Shared Link

This study's findings are in line with other studies I have seen lately dealing with the same issue.

The result is that there is some improvement because we are getting less gluten but it doesn't just go away like we had hoped.

[Ennis-TX]

Go to a whole foods only diet for a bit, easy simple to digest, and keep a food diary, your probably got a new allergy, sensitivity , or intolerance. Happens to some of us after a gluten exposure, we get new food sensitivity as our bodies end up associating something else with the exposure and will temporarily in most cases have some kind of reaction to it.
Open Original Shared Link
Open Original Shared Link
The nerve issues sound like gluten ataxia and peripheral nephropathy induced by the gluten exposure. Mine has caused spinal and brain damage. It could also be induced by B-vitmain deficiency or magnesium deficiency. Liquid Health Energy & Stress and Neurological Support 1 tbsp each 3 times a day can help with this. If you do not have constipation then try some doctors best magnesium powder in the evenings before bed.

[GFinDC]

A small white spot on your brain?  That sounds like gluten ataxia.  Gluten ataxia can cause white spots to show up on an MRI.  They call them UBO's (unidentified bright objects).   People with gluten ataxia can have trouble walking and coordinating their muscles.  Gluten ataxia can also be very sensitive to any gluten in the diet.  So a whole foods diet is a great way to go to get over the effects.

[pikakegirl]

Ten years gluten-free and clean tests every 6 mo. but developed neuritis about a month into the diet. Granted pre diagnosis i had muscle pain so bad for 15 yrs i was told i had fibromyalgia. That stopped and the nerve pain began as soon as gluten-free diet started. Have had slight elevated centrimere but not enough to say sclerederma. Dr found i have one MTHFR gene so taking lmethyfolate helped some of the pain. Exercise causes muscle fatigue and inflamation leading into terrible nerve pain. Mostly repetative exercise. Best if i mix it up. Liquid b12 has helped as well. Had a spinal tap and brain ct in 2009 all negative for MS but my friend with MS is concerned. Have you had a full Rheumatological work up? I am on Neurotin to function but lower dose 600mg daily. Still looking for answers too.

[knitty kitty]

I know this one!!! You're describing what I went through!  The numbness and buzzing and not being able to tell temperatures and gabapentin making it worse! 

It's malnutrition from malabsorption caused by Celiac Disease.  

Have you been checked for vitamin and mineral deficiencies?  I urge you to get checked.  Malnutrition is so overlooked by doctors, but occurs with malabsorption diseases like Celiac.

Gluten containing foods are usually enriched with vitamins and minerals.  When you start the gluten free diet, you are no longer getting those vitamins and minerals.  (Gluten free copy cat versions of bread and such are not required to be enriched.) Since you've got villi damage, you won't be able to absorb nutrients well until the damage starts healing.  Hence your horrible withdrawal symptoms, but feeling better a few weeks later as your villi begin to work again.  

B12, thiamine, niacin, and zinc deficiencies cause neuropathy! Read this article.... Nutritional Neuropathies

Open Original Shared Link

Gabapentin made it worse because it uses up your B12 stores.  So does nitric oxide used in anesthesia.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

And get checked to see if you have a virus!  My cold sore virus (herpes simplex virus, HSV) (like chicken pox and shingles) flares up and causes all sorts of problems! (Zinc and lysine helps.) When it flares up after a glutening, I get Bell's Palsy (numbness in my face) because HSV attacks the nerves. It attacks the nerves in my ears and I get vertigo.

Open Original Shared Link

I know I've listed a lot on B12 deficiency, but remember there are other B vitamins that cause neuropathy.  The eight B vitamins all work together, so all should be supplemented together.  They are water soluble and can't be stored in the body for long. They need to be replenished every day.  And minerals need to be balanced, too. 

Do get get checked for vitamin and mineral deficiencies, if just only to rule that out and especially before you undergo surgery! 

Hope this helps! 

Knitty Kitty?

5 hours ago, Hummingbird said:

Hi all. I'm new here even though I've poured through the forums for the last year (since being diagnosed with celiac) looking for helpful hints, similar stories, etc.  It's been invaluable, and I thank you all for that.  I've finally decided to join and post because my situation seems to be outside a search box entry, and I need some advice.

I'll try to make this as concise as possible:

I was diagnosed last July after going in for a blood test.  I specifically asked for the test because a family member was positive and I was developing weird symptoms. The top of my left toe was numb and I was getting tingling in my face.  The test came back positive. Since then, I have another test after 6 mo of gluten free diet and the test was positive but the numbers were lower.  I also had an endoscopy 6 mo after being gluten free (I know I know, I should have gotten it right away, but I was scared of how invasive it is!) and it showed that things were looking good but that I had gastritis. She said I still have celiac diagnosis.

When I first went off gluten, I went through horrible withdraws for weeks.  Motion sickness, fatigue, headache, irritability...it was awful.  But then...after a few weeks...Oh, my heavens I felt like a superhero. Energy, clarity of mind, groundedness, happiness, no more anxiety!  It was like a dream. I was like, "is this how everyone else has been living this WHOLE time????"  It was wonderful.  About a month later I got cross contaminated from something and things began to unravel. The glutening was enough to make me almost quit the diet. I got through it, but then started cycling through symptoms every couple of weeks - depression, anxiety, joint pain, head rushes, vertigo, heart palpitations, hypoglycemic type feelings after eating... it was weird, but I was still committed to getting through. 

Flash forward to the last 6 mo. I seem to be getting all the signs of MS, but my MRI's are all clear except one small white spot they said they weren't worried about. I'm getting a follow up tomorrow to see if anything has changed. It all started on the right side of my body - Buzzing in hands, feet, arms, numbness inside my finger tips, pressure on my arms and legs like something is there, and burning and tingling in my face. Now it's crossed over to the lefyt side.  I do have a herniated disc in my lower back that they're about to operate on (so much for invasiveness right?!)  but it's on the wrong side from where this all started.  My EEG's were normal which makes zero sense since the top of my toe is numb (I have a follow up with a new neurologist for a second opinion in a couple weeks). 

Last few notes - They gave me gabopentin and it seemed to make it worse so I went off it.  I have had a few instances over the years where I can't sense the correct cool temperature of water (it feels warm) with my fingers and this recently happened again.  Stress seems to make the buzzing more intense.

My whole family has gone gluten free in the house since day 1, so I don't think I'm being contaminated---but even if I was, wouldn't this be getting better after going off all the gluten I had been eating instead of getting markedly worse after going completely cold turkey?

So frustrated.  Going through the social issues of being gluten free was enough, but I was so ready to feel healthy. I was so excited I had an answer. And now everything is worse.  Anyway... Ringing any bells? Any advice?  Thanks

 

[Hummingbird]

On 6/27/2018 at 7:49 PM, GFinDC said:

A small white spot on your brain?  That sounds like gluten ataxia.  Gluten ataxia can cause white spots to show up on an MRI.  They call them UBO's (unidentified bright objects).   People with gluten ataxia can have trouble walking and coordinating their muscles.  Gluten ataxia can also be very sensitive to any gluten in the diet.  So a whole foods diet is a great way to go to get over the effects.

I had read about ataxia, but I don't have uncoordinated movements usually... although there were a couple of instances a few months ago where I kind of felt weird walking --like I didn't know what I was doing, but then it went away. Just the tingling and numbness, so I didn't know if that would be the same. I'll look into into it further. Thanks for the help.

 

[Hummingbird]

On 6/27/2018 at 6:29 PM, Ennis_TX said:

Go to a whole foods only diet for a bit, easy simple to digest, and keep a food diary, your probably got a new allergy, sensitivity , or intolerance. Happens to some of us after a gluten exposure, we get new food sensitivity as our bodies end up associating something else with the exposure and will temporarily in most cases have some kind of reaction to it.
Open Original Shared Link
Open Original Shared Link
The nerve issues sound like gluten ataxia and peripheral nephropathy induced by the gluten exposure. Mine has caused spinal and brain damage. It could also be induced by B-vitmain deficiency or magnesium deficiency. Liquid Health Energy & Stress and Neurological Support 1 tbsp each 3 times a day can help with this. If you do not have constipation then try some doctors best magnesium powder in the evenings before bed.

Ok, thanks.  I was telling someone else I wasn't sure about the ataxia because of the descriptions, but maybe I need to look further into how that can present itself.  I will definitely work on the food diary.  I've recently started studying Ayurveda to help me through some of this, and that was pushing me toward a more whole diet anyway...so I guess I just need to commit and get to it!  Thanks for all the help and advice. 

 

[Hummingbird]

On 6/27/2018 at 11:09 PM, knitty kitty said:

I know this one!!! You're describing what I went through!  The numbness and buzzing and not being able to tell temperatures and gabapentin making it worse! 

It's malnutrition from malabsorption caused by Celiac Disease.  

Have you been checked for vitamin and mineral deficiencies?  I urge you to get checked.  Malnutrition is so overlooked by doctors, but occurs with malabsorption diseases like Celiac.

Gluten containing foods are usually enriched with vitamins and minerals.  When you start the gluten free diet, you are no longer getting those vitamins and minerals.  (Gluten free copy cat versions of bread and such are not required to be enriched.) Since you've got villi damage, you won't be able to absorb nutrients well until the damage starts healing.  Hence your horrible withdrawal symptoms, but feeling better a few weeks later as your villi begin to work again.  

B12, thiamine, niacin, and zinc deficiencies cause neuropathy! Read this article.... Nutritional Neuropathies

Open Original Shared Link

Gabapentin made it worse because it uses up your B12 stores.  So does nitric oxide used in anesthesia.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

And get checked to see if you have a virus!  My cold sore virus (herpes simplex virus, HSV) (like chicken pox and shingles) flares up and causes all sorts of problems! (Zinc and lysine helps.) When it flares up after a glutening, I get Bell's Palsy (numbness in my face) because HSV attacks the nerves. It attacks the nerves in my ears and I get vertigo.

Open Original Shared Link

I know I've listed a lot on B12 deficiency, but remember there are other B vitamins that cause neuropathy.  The eight B vitamins all work together, so all should be supplemented together.  They are water soluble and can't be stored in the body for long. They need to be replenished every day.  And minerals need to be balanced, too. 

Do get get checked for vitamin and mineral deficiencies, if just only to rule that out and especially before you undergo surgery! 

Hope this helps! 

Knitty Kitty?

 

This is all amazing, thank you!!!!! 

They have tested my levels of a lot and I was low on D and iron. My B was good, but my doc wanted me to take 1000mcg anyway to help with nerve issues. And a bone scan showed osteopenia.  Maybe now that I've been on the diet so long, I should get tested again and incorporate more of these supplements into my diet.  I didn't think about the gluten free items not being enriched, so I was losing out on more than I thought with my new diet. I'll see if they can check those others out too.  

I just got tested for Lymes since I live in the midwest, and am waiting to hear on that. I will see if they can test for other viruses as well.  Thank you so much for taking the time to reply with your story and advice. I'm looking forward to digging into all the articles!

[Hummingbird]

On 6/27/2018 at 9:49 PM, pikakegirl said:

Ten years gluten-free and clean tests every 6 mo. but developed neuritis about a month into the diet. Granted pre diagnosis i had muscle pain so bad for 15 yrs i was told i had fibromyalgia. That stopped and the nerve pain began as soon as gluten-free diet started. Have had slight elevated centrimere but not enough to say sclerederma. Dr found i have one MTHFR gene so taking lmethyfolate helped some of the pain. Exercise causes muscle fatigue and inflamation leading into terrible nerve pain. Mostly repetative exercise. Best if i mix it up. Liquid b12 has helped as well. Had a spinal tap and brain ct in 2009 all negative for MS but my friend with MS is concerned. Have you had a full Rheumatological work up? I am on Neurotin to function but lower dose 600mg daily. Still looking for answers too.

They checked my anti inflammatory antibodies once and said they were fine. I don't know if that constitutes a whole work up, but I do have a herniated disc, degenerative disc disease, and arthritis in my neck and I'm only in my late 30's.  I hope you get answers soon too

[Ennis-TX]

9 minutes ago, Hummingbird said:

This is all amazing, thank you!!!!! 

They have tested my levels of a lot and I was low on D and iron. My B was good, but my doc wanted me to take 1000mcg anyway to help with nerve issues. And a bone scan showed osteopenia.  Maybe now that I've been on the diet so long, I should get tested again and incorporate more of these supplements into my diet.  I didn't think about the gluten free items not being enriched, so I was losing out on more than I thought with my new diet. I'll see if they can check those others out too.  

I just got tested for Lymes since I live in the midwest, and am waiting to hear on that. I will see if they can test for other viruses as well.  Thank you so much for taking the time to reply with your story and advice. I'm looking forward to digging into all the articles!

Yeah we sort of talk about gluten foods, and processed foods being sprayed with multivitamins.....honestly you could not live off them otherwise and people would be getting sick daily on the SAD diet otherwise (Standard American Diet). A whole food and balanced diet researching what works with what. Many cases greens and grown food can even be depleted of vitamins/minerals if grown in depleted soils.
So gluten free diet, unprocessed foods, damaged guts preventing absorption...yeah we need to supplement often.
I mentioned what I use with the liquid health and the doses I found worked for me. But do also research Magnesium Deficiency. It does relate directly to the tingling and osteoporosis.

[gadamek]

On ‎6‎/‎27‎/‎2018 at 6:31 PM, Hummingbird said:

Hi all. I'm new here even though I've poured through the forums for the last year (since being diagnosed with celiac) looking for helpful hints, similar stories, etc.  It's been invaluable, and I thank you all for that.  I've finally decided to join and post because my situation seems to be outside a search box entry, and I need some advice.

I'll try to make this as concise as possible:

I was diagnosed last July after going in for a blood test.  I specifically asked for the test because a family member was positive and I was developing weird symptoms. The top of my left toe was numb and I was getting tingling in my face.  The test came back positive. Since then, I have another test after 6 mo of gluten free diet and the test was positive but the numbers were lower.  I also had an endoscopy 6 mo after being gluten free (I know I know, I should have gotten it right away, but I was scared of how invasive it is!) and it showed that things were looking good but that I had gastritis. She said I still have celiac diagnosis.

When I first went off gluten, I went through horrible withdraws for weeks.  Motion sickness, fatigue, headache, irritability...it was awful.  But then...after a few weeks...Oh, my heavens I felt like a superhero. Energy, clarity of mind, groundedness, happiness, no more anxiety!  It was like a dream. I was like, "is this how everyone else has been living this WHOLE time????"  It was wonderful.  About a month later I got cross contaminated from something and things began to unravel. The glutening was enough to make me almost quit the diet. I got through it, but then started cycling through symptoms every couple of weeks - depression, anxiety, joint pain, head rushes, vertigo, heart palpitations, hypoglycemic type feelings after eating... it was weird, but I was still committed to getting through. 

Flash forward to the last 6 mo. I seem to be getting all the signs of MS, but my MRI's are all clear except one small white spot they said they weren't worried about. I'm getting a follow up tomorrow to see if anything has changed. It all started on the right side of my body - Buzzing in hands, feet, arms, numbness inside my finger tips, pressure on my arms and legs like something is there, and burning and tingling in my face. Now it's crossed over to the lefyt side.  I do have a herniated disc in my lower back that they're about to operate on (so much for invasiveness right?!)  but it's on the wrong side from where this all started.  My EEG's were normal which makes zero sense since the top of my toe is numb (I have a follow up with a new neurologist for a second opinion in a couple weeks). 

Last few notes - They gave me gabopentin and it seemed to make it worse so I went off it.  I have had a few instances over the years where I can't sense the correct cool temperature of water (it feels warm) with my fingers and this recently happened again.  Stress seems to make the buzzing more intense.

My whole family has gone gluten free in the house since day 1, so I don't think I'm being contaminated---but even if I was, wouldn't this be getting better after going off all the gluten I had been eating instead of getting markedly worse after going completely cold turkey?

So frustrated.  Going through the social issues of being gluten free was enough, but I was so ready to feel healthy. I was so excited I had an answer. And now everything is worse.  Anyway... Ringing any bells? Any advice?  Thanks

I don't have malabsorption issues or deficiency issues all my blood work came back normal and I'm having same issues weakness , joint pain , muscle aches , fatigue , burning sensation in legs and arms , pins and needles in fingers and toes , no upper or lower body strength , ringing in my ears off and on legs feel cold and ache. All blood work normal and hemoglobin , iron and ferritin levels normal I'm on a strict gluten-free diet Doctors are clueless and I'm about to loose my job because I'm unable to work I drive a tractor trailer and well as move heavy material in the electrical industry. Next stop is a Rheumatic doctor I'm seeing a Celiac specialist at the University of Pennsylvania Hospital and just had a colonoscopy and endoscopy that they took biopsies of small bumps a CT scan earlier revealed two non-specific enlarged lymph nodes  that may have to be removed before they become Lymphoma. Celiac Disease is nothing to fool around with I wasn't diagnosed for 3 years before they figured that out. I've asked my primary to test for Lupus he doesn't think that's what I have. It's a waiting game at this point will be filing out state benefits for financial help and medical help Social Security will be next.

[Hummingbird]

21 minutes ago, gadamek said:

I don't have malabsorption issues or deficiency issues all my blood work came back normal and I'm having same issues weakness , joint pain , muscle aches , fatigue , burning sensation in legs and arms , pins and needles in fingers and toes , no upper or lower body strength , ringing in my ears off and on legs feel cold and ache. All blood work normal and hemoglobin , iron and ferritin levels normal I'm on a strict gluten-free diet Doctors are clueless and I'm about to loose my job because I'm unable to work I drive a tractor trailer and well as move heavy material in the electrical industry. Next stop is a Rheumatic doctor I'm seeing a Celiac specialist at the University of Pennsylvania Hospital and just had a colonoscopy and endoscopy that they took biopsies of small bumps a CT scan earlier revealed two non-specific enlarged lymph nodes  that may have to be removed before they become Lymphoma. Celiac Disease is nothing to fool around with I wasn't diagnosed for 3 years before they figured that out. I've asked my primary to test for Lupus he doesn't think that's what I have. It's a waiting game at this point will be filing out state benefits for financial help and medical help Social Security will be next.

It's so crazy. Before I got celiac I thought it was just an allergy to gluten. I had no idea how intense of a disease it is.   I really hope you get answers soon and start to heal.  Thank you for sharing with me.

[Ennis-TX]

19 minutes ago, gadamek said:

I don't have malabsorption issues or deficiency issues all my blood work came back normal and I'm having same issues weakness , joint pain , muscle aches , fatigue , burning sensation in legs and arms , pins and needles in fingers and toes , no upper or lower body strength , ringing in my ears off and on legs feel cold and ache. All blood work normal and hemoglobin , iron and ferritin levels normal I'm on a strict gluten-free diet Doctors are clueless and I'm about to loose my job because I'm unable to work I drive a tractor trailer and well as move heavy material in the electrical industry. Next stop is a Rheumatic doctor I'm seeing a Celiac specialist at the University of Pennsylvania Hospital and just had a colonoscopy and endoscopy that they took biopsies of small bumps a CT scan earlier revealed two non-specific enlarged lymph nodes  that may have to be removed before they become Lymphoma. Celiac Disease is nothing to fool around with I wasn't diagnosed for 3 years before they figured that out. I've asked my primary to test for Lupus he doesn't think that's what I have. It's a waiting game at this point will be filing out state benefits for financial help and medical help Social Security will be next.

Still would suggest the magnesium and B-vitamins, testing for magnesium is never really accurate and the majority of people have some kind of deficiency in it due to diet and natural sources not containing the amounts they used to due to soil depletion with crops. B-vitamins, do not stay in the body, and some people just require more or have them out of balance, does not hurt to supplement them and you might find your body just requires more.

 

[daisymae106]

Welcome to the community! I don’t post often at all; but like you I have found this site to be a tremendous resource! I was diagnosed with celiac disease about 6 years ago! I too was almost immediately better and felt human again! I slowly started to have symptoms again which I feel were associated with other grains, dairy, sugar and inflammatory foods. Remember that celiac disease is an inflammatory disease! I wholeheartedly agree with the Whole Foods approach others have mentioned here. I am better everytime I take that route! Unfortunately I am not as faithful to this approach as I wish! I NEVER purposely cheat on gluten, but sadly I still eat too many inflammatory foods. The SCD Lifestyle website has a terrific article on why the gluten free diet alone is usually not enough. SCD (Specific Carbohydrate Diet) is almost impossible to follow in my opinion, but really works if you are really sick. As far as the neurological symptoms go, I have had muscle twitching on and off for 9 years and I’ve often wondered if it’s related to gluten! I’m sure I am cross contaminated a lot due to the fact that I eat out so much. It’s been a challenge for me to stay vigilant on the cc issue. I am magnesium deficient as well as many othe vitamins and minerals. You should check your mag levels to see if you are deficient. This affects nerve issues! Thorne makes a great powder product called cal-mag citrate. I hope this helps and I wish you all the best!

[Posterboy]

gadamek and hummingbird,

I just want to echo what Ennis_tx said.

A good B-complex, Magnesium and Vitamin D might (not cure) but it could alleviate many of your symptoms.

Gadamek you said you had ringing in your ears it is called Tinnitus and Magnesium has been show to help Tinnitus.

Open Original Shared Link

Low Vitamin D and B-12 has been associated with Neuropathies.

Here is the research on B-12 entitled "The histopathological evaluation of small fiber neuropathy in patients with vitamin B12 deficiency."

Open Original Shared Link

Here is a medscape article about it entitled "Low Vitamin D Levels Common in Painful Diabetic Neuropathy"

Open Original Shared Link

where the reviewing doctor says it well.

This finding was/ has not been followed up on because

quoting

"Dr Malik noted that a large randomized clinical trial of vitamin D would probably have to be funded by the government or other interested party rather than the pharmaceutical industry. "The key problem is, nobody is going to make money from vitamin D [research and development], so nobody's pushing it. It's extremely cheap."

And if you don't have diabetes that doesn't mean it (Vitamin D) won't help you.

Knitty Kitty talks about she feels much better when her Vitamin D levels are twice what is considered low normal.

Here is where Vitamin D has been linked to pain associated with Fibromyalgia

Open Original Shared Link

And Low Vitamin D status has even been associated with Hashimotos

Open Original Shared Link

But you never people (doctor's) say take Vitamin D for your thyroid.

They (the researchers) concluded quoting

CONCLUSIONS:

"We demonstrated that serum 25OHD levels of HT patients were significantly lower than controls, and 25OHD deficiency severity correlated with duration of HT, thyroid volume, and antibody levels. These findings may suggest a potential role of 25OHD in development of HT and/or its progression to hypothyroidism."

This knowledge has not made it down to the clinical level.

It was called the "Clinical Gap" that on average takes 17 years for new research to be applied/used in a clinical setting.

It could also be what is called a subclinical deficiency.

If 50 OHD + is neeed (like in Knitty Kitty case) to feel better from being low in Vitamin D then for her she would test normal but feel terrible.

This may be what is happening in your case.

I echo what Ennis_Tx said --- it is common especially with Magnesium and B-Vitamins like B-12 etc and as we see in Vitamin D.

Here is an article about subclinical celiac disease entitled

"Subclinical coeliac disease: an anthropometric assessment"

Open Original Shared Link

where they found that concerning their results

quoting

Results. "The overall prevalence of malnutrition in our series of celiac disease patients was 53%. Prevalence of malnutrition (actual body weight less than 90% of the ideal) was significantly higher in classical coeliacs (67%) than in subclinical ones (31 %,"

And why it was concluded 8+ years ago (only another 8+ years until it gets down to the clinical level) that  "Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet."

Open Original Shared Link

In fact it can take as long as 10 years to overcome the nutritional deficiencies (without supplementation) to overcome the deficiencies that develop in a Celiac patient and why I prefer to supplement.

See this research about the topic entitled "Evidence of poor vitamin status in coeliac patients on a gluten‐free diet for 10 years".

Here is the link

Open Original Shared Link

It may be because gluten free foods are not enriched like gluten containing foods or it might be because your stomach acid is  not strong enough to dissolve them so your small intestines can absorb them.

Here is an article that explains how low stomach acid (being misdiagnosed) as high stomach acid can be a very bad thing.

Open Original Shared Link

99% of Naturopaths conclude restore your body stomach acid production and improve your health.

They know that low or no stomach acid can restrict your bodies ability to absorb critically important nutrients.

quoting from the naturpathic currents article

Vitamin Mineral Deficiencies

"As noted previously, deficiencies of folic acid, vitamin B12, Vitamin D, Zinc, Vitamin A, calcium, iron, and zinc are associated with low stomach acid ^[1,7,10]. These deficiencies are due to a decreased ability to disassociate minerals and vitamins from food stuffs, as well as related affects on gastric secretions other than hydrochloric acid that facilitate absorption ^[4]"

If we are clinical or subclinically low it better to find the root cause of the deficiency or we have to supplement the rest of our lives (the way we might take a hormone replacement) or medicine instead of finding out Vitamin D, or Magnesium or B-12 can help us with our Neutropathies.

I must stop for now but I hope this is helpful.

****this is not medical advice but just some of the things I have learned from being low in stomach acid and being misdiagnosed.  And what  I have done to help my neuropathies.

I used to wake in the middle of the night from pernicious anemia a B-12 deficiency until I treated my stomach acid so I could begin absorbing it naturally.

I had terrible leg cramps (also that would wake me up too), the spasms continued until I took Magnesium Citrate.

I had a SAD disorder until I took Vitamin D. ... who knows if it helped my thyroid anomalies or not it has been too long to remember if I was taking it at the time it (thyroid) got better.. .. but I know it was around the time I received my Celiac diagnosis that I caught up my Vitamin D levels because they then knew to test my levels. . which to my surprise was low and had been low apparently for the 30 years before I received my Celiac diagnosis.

****Again I hope this is helpful but this is not medical advice just things I have learned that supplementation is a much easier way to catch up on a deficiency and why I still take Magnesium (and probably always will) it helps soooo much but I don't no longer take Vitamin D or Vitamin B-12 since I caught up on those.

A always  “Consider what I say; and the Lord give thee understanding in all things” this included 2 Timothy 2: 7  

Posterboy by the Grace of God,

 

[ShelleyG]

So I had all of the symptoms your speaking of ( also thought I had MS) for 18 years but I also had SIBO (small intestinal bacterial overgrowth) and was diagnosed in UK with NCGS. Which to them is an umbrella term, UK doc told me, for gluten encephalitis ( brain lining inflamed) and gluten ataxia (balance). I couldn’t get a US neurologist to diagnosis me.

Head of neurology at Dartmouth didn’t even ask about my diet before telling me I wasn’t NCGS ( I had no antibodies) because I had been on gluten-free diet for 7 years.

things that helped me are: gluten free diet , FODMAP diet WITHOUT FRUCTANS.

im also on Meds because I have permanent brain damage, abnormal EEG’s and MRI’s that US doctors say are about “ atypical migraines “ but UK doc (who specializes in NCGS, Dr Professor Marios Hadjivivassiliou
Consultant Neurologist
Academic Dept Of Neurosciences, University Of Sheffield) said that is also how NCGS brains look.

im also seeing motility Gastroentrologist at Beth Israel who has me on antibiotic Xifaxin.

My SIBO has improved after going off fructans.

They ( SIBO and NCGS) seem some how part of same thing in my case.

good luck