How long does it take for nerve problems to subside?

[Lauraclare]

I’m a 19 year old female and I’ve been unable to walk more than a few minutes without a painful tingling and burning sensation in my feet for almost 9 years now. After tests confirmed I was deficient in B12 (and a lot of other vitamins) and showing I have the genes for celiac disease I asked to be tested as I have almost all symptoms as well as dermatitis herpetiformis. I’ve been on a gluten-free diet for just over two weeks now (I’m not expecting to see a change in nerve symptoms straight away) but I was wondering roughly how long it will take? It’s driving me mad not being able to go for a short walk to clear my head, let alone live a normal life. Looking back, I’ve had symptoms of celiac disease from around age 9 or 10 (so 10 years now). I’m taking vitamin B12 supplements every day (have done my whole life) does anyone have any idea how long it will take for my body to start absorbing B12 and hopefully stop with all the nerve pain?

 

Thanks in advance! 😊

[Scott Adams]

The good news is that IF your neuropathy issues are gluten-related, then your symptoms should slowly go away if your diet is 100% gluten-free.

Taking B vitamin supplements, including B12 can help, and you may want to include zinc and magnesium citrate as well. Here are some article on this:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

This article in particular might be helpful:

 

[trents]

Your testing may be invalidated by already having started a gluten free diet. I'm not advising you to start eating gluten again but you need to know it can invalidate the testing. Do you need the testing if you are feeling better on a gluten free diet?

[Posterboy]

3 hours ago, Lauraclare said:

I’m a 19 year old female and I’ve been unable to walk more than a few minutes without a painful tingling and burning sensation in my feet for almost 9 years now. After tests confirmed I was deficient in B12 (and a lot of other vitamins) and showing I have the genes for celiac disease I asked to be tested as I have almost all symptoms as well as dermatitis herpetiformis. I’ve been on a gluten-free diet for just over two weeks now (I’m not expecting to see a change in nerve symptoms straight away) but I was wondering roughly how long it will take? It’s driving me mad not being able to go for a short walk to clear my head, let alone live a normal life. Looking back, I’ve had symptoms of celiac disease from around age 9 or 10 (so 10 years now). I’m taking vitamin B12 supplements every day (have done my whole life) does anyone have any idea how long it will take for my body to start absorbing B12 and hopefully stop with all the nerve pain?

 

Thanks in advance! 😊

Laura,

I still participate on this forum to help people like you!

I have been you....

Try reading this article and see if it doesn't describe you to a "T".

https://www.nytimes.com/2020/12/03/magazine/wernickes-encephalitis.html

They say IT well....

IN most cases "Treatment Before Diagnosis" is how a Thiamine deficiency is confirmed...

I wrote a Posterboy blog posts for people like yourself who could benefit from taking Thiamine....

I had gone on to develop undiagnosed Refeeding Syndrome from my poor malnutrition (and no I was not skinny at the time)....

See also this study from Hawaii....and IT is always considered RARE because they rarely recognize it.....before severe symptom's develop....unless your are drinking Alcohol...

Entitled "Rare Presentation of Thiamine Deficiency as Gastrointestinal Syndrome"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4175961/

I will quote the full abstract because it worth noting/reading.

"Rare Presentation of Thiamine Deficiency as Gastrointestinal Syndrome

James Duca, MSIII and Cory Lum, DO

Author information Copyright and License information Disclaimer

Go to:

Abstract

Introduction:

Thiamine deficiency is prevalent among nutritionally deficient persons and manifests as Wernicke encephalopathy or beriberi. Rare accounts of a primary syndrome consisting of GI symptoms are described in the literature.

Case Report:

The following report illustrates the case of a 30-year-old man with intractable nausea and vomiting, leukocytosis, transaminitis, and lactic acidosis that resolved rapidly after thiamine infusion. The patient was admitted with severe epigastric pain, nausea, and vomiting over the previous week and abdominal pain for the previous 2 weeks. Past medical history was significant for a four-year history of intermittent abdominal pain, and no alcohol consumption. The patient was started on IV pantoprazole for peptic ulcer disease or other gastritis. He was given IV ciprofloxacin and metronidazole for possible infection given his leukocytosis. CT and ultrasound were unremarkable. His condition improved briefly on day 5, but he failed to tolerate a clear liquid diet. Lactic acidosis began to increase on day 7, with hydration failing to alleviate the acidosis. An upper endoscopy on day 9 showed a deep duodenal ulcer, and pantoprazole was restarted. AST and ALT rose from day 4, peaking at 98 and 154 on day 11. The patient was switched from pantoprazole to famotidine on day 11 with no improvement in his LFTs. On the 12th day the patient reported numbness and tingling on his chest. He was treated with thiamine. Lactate levels that had risen to 8.7mmol/L dropped to 2.3 within 24 hours, and the leukocytosis, nausea, and vomiting resolved. The patient stated he felt “the best he had felt in weeks” and was discharged on day 13. Abnormal signs, symptoms, and lab values resolved over the following weeks. Blood drawn on day 12 was positive for low thiamine.

Discussion:

Thiamine deficiency is a rare cause of GI symptoms of nausea, vomiting, abdominal pain, and lactic acidosis. An under-diagnosed condition, failure to recognize and treat it may result in morbidity and death. Clinicians should have increased awareness of this problem, consider it in all patients with GI symptoms, and lactic acidosis, and have a low threshold to treat with thiamine."

It is me again.....a hospitalization of 13 days....could of been avoided IF they first tested the patient for a Thiamine deficiency FIRST.

I hope this is helpful but it is is not medical advice.

As always, 2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[Lauraclare]

4 hours ago, trents said:

Your testing may be invalidated by already having started a gluten free diet. I'm not advising you to start eating gluten again but you need to know it can invalidate the testing. Do you need the testing if you are feeling better on a gluten free diet?

I stopped eating gluten after I had been tested, I’m just waiting for the results now hence coming off gluten 

[GFinDC]

Hi Laura,

The testing for celiac disease generally includes anti-gliaden antibody tests in the blood, then an endoscopy.  The endoscopy is often several months after the blood antibody testing.

Recovery from nerve problems can be slow as nerves tend to heal slowly.  Six months or more is not unusual.  I don't know if they will help but arch supports for plantar fasciitis may be worth trying.  The stiff style of arch supports are better IMHO.

Your foot pain may be related to calcium deficiency and vitamin D and boron also.

[notme]

try drinking extra water, too.  can't hurt to hydrate   

[BuddhaBar]

It might not be the b12 deficiency that's causing your nerve issues. I'm one of the few unlucky ones with an immune system that attacks my nerves and my brain when I get glutened. Nerve symptoms like tingling, pins and needles and an intense burning pain in my feet was one of my first symptoms of celiac. It took several months before my nerves went back to normal. Be patient and give it time. 

[DJFL77I]

up to 6 months.. or longer...............

its strange that some people have no symptoms or very few even when diagnosed at an old age... yet young people can have more symptoms?

[Scott Adams]

I think symptoms can vary greatly per individual, and may not have a lot to do with age.