Neuropathy and encephalopathy

[Stepherwolf]

I am new to posting.  I am 47 and diagnosed accidently 1 year ago.  I was relieved to be diagnosed as I have had years of testing,  (really decades), and was looking forward to feeling better.  I have been 100% compliant and have reversed all numbers from almost 200 to 7 (normal). 2 scoping and my intestines will probably never heal.  But the last 6 months have gone poorly and my mind is now barely function.  I thought it was MS- eye symptoms including loss of vision,  dibiltating head fog,  twitching muscles,  tingling,  numbness,  and many more.  Anyways,  after more and more tests was diagnosed with Celiac neuropathy and encephalopathy. Trying an antidepressant of sorts to see if it helps with mind fog.  Does anyone else suffer from this? Mine is progressing quickly.  Again,  gluten free home since diagnosis and doing great on paper.  All labs and nutritional numbers are perfect.  Also dairy free.  

[Ennis-TX]

Yep, over 4 years in, I have gluten ataxia with it where it attacks my brain and nervous system. I had a scope last year and my intestines had mostly healed. The nerve damage not so much....that might never. I suffered brain, nerve damage from it and lost the ability to do something, numbness in hands in feet (I can pick up a sheet out the oven and smell the skin before I feel it). The fog was annoying, for me my mind would even loop on the same thought process over and over like a broken record completely maddening. Ever stood their trying to do something but you mind would not let you think of how to do it so you just sit there staring at something instead of using it....yeah been there.
ANYWAY B-vitamin complex and magnesium are common issues with the disease. The B-complex i use is liquid with Liquid Health Stress &  Energy and their Neurological Support formula 2 tbsp each 3 times a day. Really helps a bit.
Since you did not mention C for the twitching muscles and aches Magnesium Glycinate from Doctors best would be best. Also Helps with mood. 
 

[GFinDC]

HI SW,

Welcome to the forum!  

As Ennis said, nerves can be slow to heal.  That's true for everybody though, not just people with celiac disease.  A study found that it can take 18 months or more to heal the gut.  Nerve issues could take longer.

The B-vitamins are supposed to be helpful, especially B-12.  Selenium is another thing to try.  It might also help to avoid soy and go on a mostly whole food diet with no processed foods for several months.  Taking some pro-biotics may help too.

I figure you've been tested for diabetes along the way?  Blood glucose being high can affect mental alertness too.

The less processed foods you eat the less chance of contamination with gluten.  One study found that some people who were still having symptoms while on the gluten-free diet were not as gluten-free as they thought they were.  Little bits of gluten were sneaking in and causing problems.

Another possible issue is additional food intolerances which can develop with celiac disease.  Some of the common ones are soy, corn, dairy, eggs, and nightshades.  The way to find those additional food intolerances is with an elimination diet.

I hope you feel better soon.

[Stepherwolf]

6 hours ago, GFinDC said:

HI SW,

Welcome to the forum!  

As Ennis said, nerves can be slow to heal.  That's true for everybody though, not just people with celiac disease.  A study found that it can take 18 months or more to heal the gut.  Nerve issues could take longer.

The B-vitamins are supposed to be helpful, especially B-12.  Selenium is another thing to try.  It might also help to avoid soy and go on a mostly whole food diet with no processed foods for several months.  Taking some pro-biotics may help too.

I figure you've been tested for diabetes along the way?  Blood glucose being high can affect mental alertness too.

The less processed foods you eat the less chance of contamination with gluten.  One study found that some people who were still having symptoms while on the gluten-free diet were not as gluten-free as they thought they were.  Little bits of gluten were sneaking in and causing problems.

Another possible issue is additional food intolerances which can develop with celiac disease.  Some of the common ones are soy, corn, dairy, eggs, and nightshades.  The way to find those additional food intolerances is with an elimination diet.

I hope you feel better soon.

Thank you! I am not diabetic.  My dad was and they always assumed my symptoms even as a kid would lead me to diabetes.  I was testing every 6 months growing up.  It was frustrating to take a lifetime to be diagnosed.  I am upping all my supplements including B, turmeric and trying caprylic acid and no soy or dairy. I sure hope to feel better soon.  

[cyclinglady]

I think that if you want faster results and the fact that this really impacting your brain, you should consider the Fasano diet, which is eating only foods (whole) that you prepare.     No eating out and no gluten-free processed foods.  This includes even gluten free supplements, unless your doctor has found that you are deficient in something based on lab tests.  There are new studies indicating that gluten is creeping into even the most diligent celiac’s diet.  It can be one reason why some 1/3 of celiacs are not healing.  Let your doctor know about this restricted diet and note that is just done temporarily.  

The diet located in this study:

Open Original Shared Link

Hidden gluten study:

Open Original Shared Link

[Stepherwolf]

1 hour ago, cyclinglady said:

I think that if you want faster results and the fact that this really impacting your brain, you should consider the Fasano diet, which is eating only foods (whole) that you prepare.     No eating out and no gluten-free processed foods.  This includes even gluten free supplements, unless your doctor has found that you are deficient in something based on lab tests.  There are new studies indicating that gluten is creeping into even the most diligent celiac’s diet.  It can be one reason why some 2/3 of celiacs are not healing.  Let your doctor know about this restricted diet and note that is just done temporarily.  

The diet located in this study:

Open Original Shared Link

Hidden gluten study:

Open Original Shared Link

Thank you.  I will definitely look into this.  I have no problem with adjusting anything to get my mind back. 

[ch88]

I feel best if I avoid dairy, corn, rice, soy, coffee and alcohol.  Other people have a different set of problem ingredients or they just avoid wheat. I feel terrible emotionally if I eat wheat. Also I suspect that other foods can cause confusion, depending on the health of my gut and the blood brain barrier. 

I try to balance my bodies PH based on things I have read online. Urine PH test strips are available. I use a little bit of baking soda, or apple cider vinegar. A healthy kidney is very important as well as a healthy gut.  A modern diet is to acidic and this can make it difficult for the kidneys to function properly is some cases. 

I take gluten free, glutamine powder as it is the preferred fuel for the cells that line the gut.

The AIP diet seems to work for a lot of people.

Open Original Shared Link

Open Original Shared Link

 

[Posterboy]

Stepherwolf,

You might also want to read this thread.

It deals with depression and other mind body connections of celiac disease. . . falling under the common term of "gluten ataxia".

Here is the link/research that list many of the more common Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity

Open Original Shared Link

I hope this is helpful and good luck on your continued journey.

**** this is not medical advice but I used to have some of the same fogginess so common like ennis_tx mentions about being stuck in a loop.

there is hope.   . .  many of use on this board have gotten better.

I just takes a little while sometimes . . and I know who can wait that long but I wanted to share some of the techniques via supplementation that helped me in addition to the gluten free diet.

And here is a link about common supplements appropriate for celiacs

Open Original Shared Link

Ennis_tx and I both agree on Magnesium and a good B-complex that they both helped us tremendously.

And here is the link on B-Vitamins being helpful in Celiac's.

Again I hope this is helpful and “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,