Pereripheral Neuropathy

[p3000g]

Hi

 

I have tested positive for Deamidated Glaidin antibodies recently. I don't have any classic celiac symptoms, only neurological symptoms like pins and needles and crawling bugs for about 6 months or so. I started a gluten free diet about a month ago and noticed slight improvement in my symptoms.  How long does it take to truly recover from these weird feelings once on a gluten free diet? I know nerves heal slowly , but I am patient enough and want to hear some positive stories

 

[NNowak]

From my experience, it could take well over a year for your body to heal in order to absorb all the nutrients from your food. Some people have symptoms resolve after several months.  I strongly recommend that you be tested for vitamin deficiencies at this point so you have a better idea of how to heal yourself.  Vitamin deficiencies can cause the pins and needles symptoms.  Have you been biopsied?  If so, what was the extent of the damage?  That’s a good indicator of the amount of healing that needs to take place. 

Research natural ways to heal the gut. There is a lot out there, and you need to know your options. That’s great you are on the road to recovery!

[p3000g]

Thanks. No I have not been biopsied yet. Just blood tests. Transglutaminase  normal but Deamidated Glaidin IGG high at 77 (normal below 15). Vitamin (B12,B6 etc) done a few months back were also normal. At this point the prime suspect for  my neurological issues are gluten and allopurinol ,  the drug I am taking to combat another health condition (gout and high uric acid) . I have discontinued it and also gone gluten free, but the symptoms, though reduced a bit, do persist ( though I realize a month is very less time for the symptoms to improve)

 

 

[NNowak]

Make sure to follow up with your doctor regarding your symptoms and dive into your research. Good luck!

[Hellodee2]

I still get pins and needles in both my hands and feet on a regular basis and I've been gluten-free for 13 yrs. I'm on B-12 shots and my GI doc is monitoring everything else. I'm healed as much as I'll ever be so, I guess, this is something I'll die with. Hope you don't end up in the same boat.

[Ennis-TX]

I found magnesium with the B-vitamins helped the pins and needles....mine felt more like burning needles on fire though. It took over 5 years for me to get a great amount of my dexterity back, it mostly manifested in lack of sensitivity to hot/cold, and sharp touches (cuts/stabs) along with a slight delay in reactions (Did not effect daily life, but I had to give up competitive video games). I have regained sensitivity to heat/cold, and can feel when I cut myself now days, working with tiny things or playing games is much harder then it should be with a noticed delay and issues with coordination.
Now I also had some brain damage from the ataxia that to this day never healed.

[p3000g]

Thanks folks. Did anyone try alpha-lipoic acid for their neuropathy? I have heard a lot of positive things about it. Any other supplements other than alpha lipoic acid and B vitamins ? (B12)

[ch88]

 

1 hour ago, p3000g said:

Thanks folks. Did anyone try alpha-lipoic acid for their neuropathy? I have heard a lot of positive things about it. Any other supplements other than alpha lipoic acid and B vitamins ? (B12)

Maybe a gluten free complete multivitamin/multi mineral. That is what I take. 

 I also take fish oil. I have gout and celiac and some neurological symptoms, but nothing major. For myself it isn't nerve related. A lot of people with brain related symptoms are very sensitive to small amounts of gluten. I eat just fruit and vegetables and meat and take some vitamins. 

I would get your uric acid levels checked frequently. If you have gout, like myself, high uric acid levels in the blood can lead to increased inflammation. 

For me eliminating all trace contamination of gluten as well as avoiding alcohol and other grains- suh as oats-  and nightshades -I think- seems to help a lot. 

[Keight]

Also consider blood sugar levels. I tend to get pins and needles more after a few hours of eating anything high glycaemic index. 

[Wheatwacked]

On 11/5/2019 at 12:09 PM, p3000g said:

How long does it take to truly recover from these weird feelings once on a gluten free diet?

As an infant back in 1976, it took my son 6 months on Nutramigen Infant Formula. As an old man it's taken me 6 years. Of course it took me 40 years to recognize that gluten was the problem, then 5 years to recognize that stopping the poison (gluten) was only the first step. It takes time to heal the damage already done, but to do that you need sufficient intake of all of the 40 or so essential nutrients. Consider them the tools and supplies our bodies need. Drugs are not the answer, although maybe necessary because of damage done already. This is a nutrition problem with subsequent systemic effects.  A carpenter cannot work right without hammer and nails and material. Our bodies cannot work right without minerals and vitamins, protein, fats and carbohydrates, many of which are deficient in our diets anyway; and then if you add in Celiac...well, think about it. With my son it was easy because as a 3 month old infant his diet was limited. As an adult it is harder because we consider it our God given right to eat American food, our entitlement; so first we have to mourn our dietary losses, stop eating gluten and start to eat a nutrient dense diet. And because a Celiac patient's digestive system is often severely compromised by the time of diagnosis, he may well need to supplement them, at least while healing. In addition, vitamin and mineral testing is expensive and many of the tests are only scientific guestimates.

It is always two steps forward, one or two steps backward  At least there is hope. Never lose hope. Tomorrow is only a day away.

[p3000g]

Thanks for all the valuable suggestions folks. Nowadays I view gluten as poison. Just a few months ago, I was loading up on everything whole wheat (pizzas, subs, sandwiches , buns , bagels you name it), thinking that I was eating as healthy as possible. This food and nutrition industry is partially responsible for our condition. Who gave them the right to make blanket statements on what is healthy food and what is not? One person's medicine may be another person's poison

[Ennis-TX]

2 minutes ago, p3000g said:

Thanks for all the valuable suggestions folks. Nowadays I view gluten as poison. Just a few months ago, I was loading up on everything whole wheat (pizzas, subs, sandwiches , buns , bagels you name it), thinking that I was eating as healthy as possible. This food and nutrition industry is partially responsible for our condition. Who gave them the right to make blanket statements on what is healthy food and what is not? One person's medicine may be another person's poison

I completely agree, after all this crap I came to research and learn that the Paleo diet is the most natural diet for humans that we are evolved to eat. Heck we are genetically evolved to rotate on a keto for part of the year. And here I am now forced on a Paleo and Keto diet if I even want to live after my system broke.

[Keight]

Fully concur! Meat and veg are the bulk of my diet now and I am of the belief we have been fed a pack of dangerous lies. The processed food... I will not start myself on this, but I am ANGRY. 

[Wheatwacked]

D3 and Lithium helped my anxiety, iodine improved my upper body muscle tone, choline clearing lipids, iron with fatigue, folic acid (ubiquitous in processed food) is not processed in our body like folate and is linked to increase of prostate cancer and other diseases. DHEA improved my general well being. Chromium; control studies show it lowers A1C. Potassium you need the equivalent of 6 bananas a day. If your belly is extended you put excess stress on the cargo net that holds your organs in place and it is full of major nerve bundles and veins and arteries that will refer pain to all kinds of weird places. And as your health improves, those pressures will move and refer pain elsewhere, the important good thing is the focal points of pain keep moving. My healing worked its way down starting with my hair and through my intestines and I've only gotten halfway through the list. There are 41 vitamins and minerals. Compare your intake to what NIH says it should be and adjust your diet and supplements. The box label states a percentage of the RDA minimum needed for minimum health. Don't be fooled again. You need closer to the max to promote healing. It is good that you caught it early.

[delawareperson]

To the original poster... I am curious to see if you have had any improvement over the last couple months, as I have had similar issues. I have had neurological issues starting almost 3 years ago due to paresthesias that started as tingling/burning in the hands and feet. That has progressed to stinging sensations all over my body.  Been to doctors and neurologists. Neurologist says it is anxiety because my MRI's were normal and bloodwork was mostly normal. The one thing on my bloodtest that wasn't normal was a slightly low "Immunoglobin A, Qn, Serum" (IgA).  That was 60 mg/dL, when the normal range is 90-386.  They didn't think anything of it, however in my research I have found that that could indicate a problem with celiac/gluten.  I have no other health issues aside from these neuro issues. I get burning hands and feet at night. It really sucks. I just sent away for the Enterolab testing and expect a result in a week or two. Does this sound like gluten intolerance to anyone?

[kareng]

10 minutes ago, delawareperson said:

To the original poster... I am curious to see if you have had any improvement over the last couple months, as I have had similar issues. I have had neurological issues starting almost 3 years ago due to paresthesias that started as tingling/burning in the hands and feet. That has progressed to stinging sensations all over my body.  Been to doctors and neurologists. Neurologist says it is anxiety because my MRI's were normal and bloodwork was mostly normal. The one thing on my bloodtest that wasn't normal was a slightly low "Immunoglobin A, Qn, Serum" (IgA).  That was 60 mg/dL, when the normal range is 90-386.  They didn't think anything of it, however in my research I have found that that could indicate a problem with celiac/gluten.  I have no other health issues aside from these neuro issues. I get burning hands and feet at night. It really sucks. I just sent away for the Enterolab testing and expect a result in a week or two. Does this sound like gluten intolerance to anyone?

The total IGA being a bit low, isn’t Celiac.  There are specific tests your doctor can run, usually called a “Celiac panel” that are the actual blood tests for Celiac.  The total serum IGA is run with it to determine if you can make enough “IGAs “ to have a valid IGA Celiac test.  Being a bit low should not affect the IGA celiac tests.  
 

not sure what Enterolabs is doing for you, but your doctor could order the Celiac panel and your insurance would pay for it and you would get medically accepted testing.  

[delawareperson]

1 minute ago, kareng said:

The total IGA being a bit low, isn’t Celiac.  There are specific tests your doctor can run, usually called a “Celiac panel” that are the actual blood tests for Celiac.  The total serum IGA is run with it to determine if you can make enough “IGAs “ to have a valid IGA Celiac test.  Being a bit low should not affect the IGA celiac tests.  
 

not sure what Enterolabs is doing for you, but your doctor could order the Celiac panel and your insurance would pay for it and you would get medically accepted testing.  

I have grown frustrated with doctors so I just went ahead and paid for the gluten tolerance test from Enterolabs.  

[kareng]

25 minutes ago, delawareperson said:

I have grown frustrated with doctors so I just went ahead and paid for the gluten tolerance test from Enterolabs.  

Just know that most of their tests are not considered medically valid. Not sure if they will do a real celiac blood panel for you or not.  

[delawareperson]

Thank you for the advice. Depending on what the results are, I may go the doctor route.

[p3000g]

On 1/6/2020 at 3:40 PM, delawareperson said:

To the original poster... I am curious to see if you have had any improvement over the last couple months, as I have had similar issues. I have had neurological issues starting almost 3 years ago due to paresthesias that started as tingling/burning in the hands and feet. That has progressed to stinging sensations all over my body.  Been to doctors and neurologists. Neurologist says it is anxiety because my MRI's were normal and bloodwork was mostly normal. The one thing on my bloodtest that wasn't normal was a slightly low "Immunoglobin A, Qn, Serum" (IgA).  That was 60 mg/dL, when the normal range is 90-386.  They didn't think anything of it, however in my research I have found that that could indicate a problem with celiac/gluten.  I have no other health issues aside from these neuro issues. I get burning hands and feet at night. It really sucks. I just sent away for the Enterolab testing and expect a result in a week or two. Does this sound like gluten intolerance to anyone?

I don't know about IGA being below normal. In my case, the Demidated Gliadin IGG was above normal (almost by 5 times) . This is only tested as a part of the celiac panel tests. I have been gluten free for about 4 months now. I have noticed a slight improvement in symptoms, albeit slowly. But I believe, damage to nerves takes more than 4 months to repair. So, I will persevere with this diet and see how it goes for about a year or so

[p3000g]

On 11/5/2019 at 4:09 PM, ch88 said:

 

Maybe a gluten free complete multivitamin/multi mineral. That is what I take. 

 I also take fish oil. I have gout and celiac and some neurological symptoms, but nothing major. For myself it isn't nerve related. A lot of people with brain related symptoms are very sensitive to small amounts of gluten. I eat just fruit and vegetables and meat and take some vitamins. 

I would get your uric acid levels checked frequently. If you have gout, like myself, high uric acid levels in the blood can lead to increased inflammation. 

For me eliminating all trace contamination of gluten as well as avoiding alcohol and other grains- suh as oats-  and nightshades -I think- seems to help a lot. 

Thats interesting.What do you take for your gout ? I tried both uloric (febuxostat) and allopurinol and couldn't tolerate either . (In fact, I suspect allopurinol to one of the causes of my neuropathy alongwith gluten). I am trying to control uric acid by diet and supplements, but remains a challenge

[delawareperson]

23 hours ago, p3000g said:

I don't know about IGA being below normal. In my case, the Demidated Gliadin IGG was above normal (almost by 5 times) . This is only tested as a part of the celiac panel tests. I have been gluten free for about 4 months now. I have noticed a slight improvement in symptoms, albeit slowly. But I believe, damage to nerves takes more than 4 months to repair. So, I will persevere with this diet and see how it goes for about a year or so

My enterolab test came back that I was gluten sensitive. Elevated gliadin antibodies. The enterolab report recommended a permanent gluten free diet.

The IGA that I was referring to was a blood test that showed low IgA serum, which I think is something that helps your immune system. I've read that if it is low, there's a greater chance of having celiac or gluten sensitivity.

I've been on a gluten free diet for about a month. I am optimistic, as my symptoms may be getting slightly better.  I am glad to hear that after 4 months you've seen a slight improvement. I hope you continue to get better.

[p3000g]

15 hours ago, delawareperson said:

My enterolab test came back that I was gluten sensitive. Elevated gliadin antibodies. The enterolab report recommended a permanent gluten free diet.

The IGA that I was referring to was a blood test that showed low IgA serum, which I think is something that helps your immune system. I've read that if it is low, there's a greater chance of having celiac or gluten sensitivity.

I've been on a gluten free diet for about a month. I am optimistic, as my symptoms may be getting slightly better.  I am glad to hear that after 4 months you've seen a slight improvement. I hope you continue to get better.

Good luck.. The gluten free diet has a steep learning curve. There are so many hidden sources of gluten , I am discovering new ones every now and then. And , eating out has become quite a chore..Have to watch everything I eat

 

[Wheatwacked]

On 1/28/2020 at 9:45 PM, p3000g said:

Thats interesting.What do you take for your gout ?

I've been on APO Prednisone since 2012. Started for the acute gout pain and continued because it is the only thing that helped my arthritis and fibromyalgia and it is cheap and no life threatening side effects. And it helps with mood to boot.

[delawareperson]

On 1/30/2020 at 11:29 AM, p3000g said:

Good luck.. The gluten free diet has a steep learning curve. There are so many hidden sources of gluten , I am discovering new ones every now and then. And , eating out has become quite a chore..Have to watch everything I eat

 

How are you feeling these days?

my small fiber neuropathy test came back positive. I still have neurological symptoms after a few months of gluten free. In some ways I feel a little better but not completely healed.