Pls. share your neuropathy symptoms & healing experiences - I am in need of some hope!!

[Kate333]

Hi everyone!

I was diagnosed in late 2019.  Adopted strict gluten-free diet in early 2020.  My initial TTG was 224 (IgA has always been normal).  After 2+ years on the strict gluten-free diet, I was happy to report my TTG finally normalized in April 2022 (13 - normal scale is 15 or less).  My follow-up EGD/biopsies were also normal.  

But, honestly, I haven't noticed any real dramatic improvement in these weird neuro symptoms, esp. constant bilateral foot numbness, feeling a bit unbalanced/lightheaded, esp. noticeable when walking, and brain fog (esp. short-term memory).  I also struggle with some MH issues (including bad insomnia/anxiety/depression/PTSD), but also realize that those problems--esp. magnified by this Covid pandemic era stress--can also cause these neuro symptoms independent of celiac disease.

I had a brain MRI 2 years ago which was normal.  I asked my primary doc again to refer me for another neuro consult this week and asked that neuro doc for an updated MRI after he said he noticed slightly diminished foot sensations and gait issues (I slept poorly the night/morning of the neuro test).  I told him that I was aware of studies showing that celiac disease-related brain damage can show up on brain scans.   He declined to order MRI/CT but also didn't offer any hope for improvement...;-(.     

The thought that these symptoms could be permanent despite FINALLY achieving (and commitment to maintaining) "normal" gluten antibody blood test levels makes me very scared and sad!!! I And I could really use some spirit-boosting, hopeful stories, cheering up from any of you who had the same or similar symptoms and eventually healed/improved. 

My vitamin/mineral levels are normal and, yes, I take multivitamin supplements religiously!

Thanks for taking time to read/respond!

 

[knitty kitty]

@Kate333,

My heart goes out to you.  I've dealt with the same symptoms.  The one thing that made the biggest difference for me was taking high dose Thiamine Vitamin B1.  Yes, I was taking a multivitamin and still had symptoms.

Blood tests for vitamin levels are not an accurate measurement of the level of vitamins inside the tissues, organs and muscles of the body where the vitamins are actually utilized.  Blood tests for vitamin levels are reflective of how much you have consumed of that vitamin within the past twenty-four to forty-eight hours.  You should be off all vitamin and mineral supplements for six to eight weeks before having your blood levels tested.  Otherwise you are simply getting a measurement of the supplements you have consumed.

The brain controls blood levels of certain vitamins and minerals to supply the brain itself and major organs like the heart and lungs.  The body will take needed vitamins from the stores in the tissues and put them into the bloodstream to supply the brain.  The tissues, organs, nerves and muscles will be on minimum rations or be outright deficient.  So while a test may not show a deficiency in the blood, there is a functional deficit within the tissues.  

Thiamine is utilized by every cell in the body.  In one day, our brains can use as much Thiamine just thinking at a desk job as a marathon runner's muscles would use in a race.  

Thiamine is necessary for nerves to send electrical signals to our brains.  Thiamine is needed to make and maintain the myelin sheath that surrounds the nerve, much like colored plastic coatings on electrical wires, so the nerve impulse can travel to the brain.  

Lots of Thiamine is used in the part of the brain that controls things we don't have to consciously think about like adjusting our breathing rate, digesting food, and keeping our balance.  The fight or flight response is wired through this part of the brain.  The fight or flight response can be easily triggered in thiamine insufficiency resulting in depression, anxiety, panic attacks and PTSD.  

When there's an insufficiency in Thiamine, the special transporters that let thiamine into the cells shut down.  In order to turn the transporters back on, high doses of thiamine are taken so that thiamine can get into the cells by passive diffusion (think cattle stampede).  

High Dose Thiamine is 500 - 1500 mg/per day of Thiamine Hydrochloride.  Benfotiamine or Allithiamine are fat soluble forms of thiamine that are especially helpful with the brain and nerve function. 

To function properly, Thiamine needs its friends, Magnesium, Niacin, and Riboflavin.  Riboflavin works with Pyridoxine, Folate and Cobalamine.  Deficiencies in these vitamins can also contribute to peripheral neuropathy, gait issues, balance issues, and brain health issues (mental health).  So taking a B Complex supplement and Magnesium citrate along with high dose Thiamine is essential.

You can go to my blog to read my experiences with thiamine deficiency.  Suffice it to say, I was given the gamut of antidepressants and therapy over the years, but nothing worked as well as correcting my Thiamine deficiency.  Yes, you can have a subclinical deficiency or insufficiency for years.  Correcting nutritional deficiencies caused by undiagnosed Celiac Disease is instrumental in regaining physical and mental health.  

You can find more information about Thiamine here...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

and here....

https://www.hormonesmatter.com/what-is-thiamine-to-energy-metabolism/

 

[Russ H]

18 hours ago, Kate333 said:

Hi everyone!

I was diagnosed in late 2019.  Adopted strict gluten-free diet in early 2020.  My initial TTG was 224 (IgA has always been normal).  After 2+ years on the strict gluten-free diet, I was happy to report my TTG finally normalized in April 2022 (13 - normal scale is 15 or less).  My follow-up EGD/biopsies were also normal.  

But, honestly, I haven't noticed any real dramatic improvement in these weird neuro symptoms, esp. constant bilateral foot numbness, feeling a bit unbalanced/lightheaded, esp. noticeable when walking, and brain fog (esp. short-term memory).  I also struggle with some MH issues (including bad insomnia/anxiety/depression/PTSD), but also realize that those problems--esp. magnified by this Covid pandemic era stress--can also cause these neuro symptoms independent of celiac disease.

I had a brain MRI 2 years ago which was normal.  I asked my primary doc again to refer me for another neuro consult this week and asked that neuro doc for an updated MRI after he said he noticed slightly diminished foot sensations and gait issues (I slept poorly the night/morning of the neuro test).  I told him that I was aware of studies showing that celiac disease-related brain damage can show up on brain scans.   He declined to order MRI/CT but also didn't offer any hope for improvement...;-(.     

The thought that these symptoms could be permanent despite FINALLY achieving (and commitment to maintaining) "normal" gluten antibody blood test levels makes me very scared and sad!!! I And I could really use some spirit-boosting, hopeful stories, cheering up from any of you who had the same or similar symptoms and eventually healed/improved. 

My vitamin/mineral levels are normal and, yes, I take multivitamin supplements religiously!

Thanks for taking time to read/respond!

 

Hi

I think you still have cause to be optimistic. Firstly, you know you have the condition and are treating it appropriately so that it goes into remission, and it won't get worse. You know this because your tTG2 antibodies have fallen to a low level. Secondly, you have only just got your antibodies down and healing takes time.

If your gait issues are related to coeliac disease, the studies I have read suggest that they stop getting worse and generally improve on a strict gluten-free diet. Do you know how long you might have had coeliac disease for? Now that you have stopped it progressing, how about balance and co-ordination exercises to regain physical control - dancing is a good exercise for example. Incidentally, do you have tinnitus / hearing loss?

It has been a difficult couple of years with the pandemic but remember that "insomnia/anxiety/depression/PTSD" type symptoms can be caused by coeliac disease and these generally improve over time.

Hang in there,

Russ

[knitty kitty]

I found an interesting article about levels of certain vitamins being lower in depressed patients.

Blood plasma B vitamins in depression and the therapeutic response to electroconvulsive therapy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8474603/

 

[Posterboy]

Kate333,

Knitty Kitty  has given you good advice!

Taking some Benfotiamine (it has a much higher absorption rate) than standard Thiamines found in B-Complex's...like 6 to 7x as much....

Benfotiamine has successfully been used in Diabetic Polyneuopathy.....

See this article about it....

https://www.naturalmedicinejournal.com/journal/2018-11/thiamine-deficiency-and-diabetic-polyneuropathy

But for Benfotiamine to work properly......you need to also take Magnesium with it......Magnesium Citrate is a good form to take with foods......and Magnesium Glycinate (a little more expensive) can be taken any time....

3x a day (with meals) is best......so it spread out over the day......both for Benfotiamine and Magnesium and B-Vitamins (taken in general) for about 3 months and you should begin to notice a sustained difference.

For Depression specifically Magnesium.....again best as Magnesium Citrate with food or Magnesium Glycinate anytime......Magnesium has been shown to help "Refractory Depression" or Major Depression which means 2 (two) or more depression medicines......couldn't put the depression in remission.....but Magnesium could within a months time....

It does this in two ways (Mainly) directly by itself and Secondarily as a Co-Factor for Thiamine.....which (Vitamin B1) the body needs to keep the brain free of Fog....

See this research entitled "Rapid recovery from major depression using magnesium treatment"

https://pubmed.ncbi.nlm.nih.gov/16542786/

This research is 15+ years old and still doctor's don't know the power of Magnesium to heal people from Major Depression issues...

quoting from the abstract

"Case histories are presented showing rapid recovery (less than 7 days) from major depression using 125-300 mg of magnesium (as glycinate and taurinate) with each meal and at bedtime. Magnesium was found usually effective for treatment of depression in general use. Related and accompanying mental illnesses in these case histories including traumatic brain injury, headache, suicidal ideation, anxiety, irritability, insomnia, postpartum depression, cocaine, alcohol and tobacco abuse, hypersensitivity to calcium, short-term memory loss and IQ loss were also benefited. Dietary deficiencies of magnesium, coupled with excess calcium and stress may cause many cases of other related symptoms including agitation, anxiety, irritability, confusion, asthenia, sleeplessness, headache, delirium, hallucinations and hyperexcitability, with each of these having been previously documented."

It (Magnesium) (and Thiamine as Benfotiamine) is how I beat my depression issues and my neuropathy symptom's in my hands and feet and a good B-Complex which has the Riboflavin and Niacin that also helps depression that Knitty Kitty mentioned should also help your mind and nerves heal.

I could go on......but this is enough to get you started in the right direction!

And if I am not on here as much as in the past......I know Knitty Kitty can help you.....she is battle tested herself and have found the above regimen of Vitamins can and really do  help!

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

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,

[Posterboy]

On 5/26/2022 at 10:01 PM, Kate333 said:

brain fog (esp. short-term memory). 

Kate333,

You might try some Lecithin......I started retaking it again recently.....it has really helped my focus.

It can be brought in granules or as a Liquid gel (capsule)......best taken with meals.

I knew about Lecithin before.....but it had been a while since I  had taken it......but I  cycled back on it recently....

And while I have felt my memory was "Ok"........my memory seems to have taken a jump lately since I started back on it (Lecithin)....

Also if you are taken Statins.......know it might be that as well......I would have memory issues when taking statins.....so I refuse to take them to this day....

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

Posterboy,