Gluten Ataxia and Malabsorption

[Soleihey]

Started having ataxia symptoms (tremor, twitching, leg weakness, slurred speech) approx 1 year ago. I have had extensive neurological testing and negative. However, I had celiac blood and gene testing that were both markedly positive. Have been gluten free for almost 1 year but still having episodes or flairs. Has anyone else experienced this?  I have been pretty strict about my diet and am also dairy free.  How long before it took you to feel like symptoms mostly resolved? 
 

I would like to add I’ve also been pregnant for most of this time, so I’m seeing a lot of my symptoms return postpartum. Now that I’m also having regular bowel movements in comparison to the constipation from pregnancy, I am noticing evidence of malabsorption in my stool. I also lost weight postpartum quickly.

I have an upcoming appointment with a G.I. to hopefully get an endoscopy done. I’m on several supplements and have no known deficiencies on bloodwork. Has anyone found that increasing fiber or starting a digestive enzyme supplement helped? 
 

I am hoping there is still some chance for my body to heal since it has been 11 months on the diet. 

[Scott Adams]

Have you been taking a good multi-vitamin & mineral formulation? Long term nutrient deficiencies can lead to gluten ataxia. Be sure to discuss this with your doctor.

The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.

Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.

 

 

 

[Soleihey]

I have been on supplementation for almost 11 months with no deficiencies showing up on blood work. So was just hoping to hear someone else’s story where it took longer to heal. 

[Scott Adams]

It took me 2-3 years to feel like my gut recovered, and then I still had gluten ataxia issues for well over a decade. 

This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet:

• Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet

However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people.

According to this study:

Quote

After an average of 11 months on a gluten-free diet, 81% of patients with celiac disease and positive tissue transglutaminase IgA (tTG-IgA) at baseline will revert to negative tTG-IgA (SOR: C, disease-oriented evidence from retrospective cohort study). The intestinal mucosa of adult patients with celiac disease will return to normal after following a gluten-free diet for 16 to 24 months in only 8% to 18%. However, in children after 2 years, 74% will have a return to normal mucosa (SOR: C, diseaseoriented evidence from longitudinal studies).

This article explores other causes of flattened villi:

 

 

[peg]

Hi Scott,

You mentioned in your response that you have been taking supplements long term.  What brand(s) do you take?  I ask because I've had a very difficult time finding truly gluten free supplements that have not made me sick over time from allowable trace amounts of gluten within the FDA's acceptable limits.

Thank you,

Peg

[Scott Adams]

The link is in my signature block, but is:

 

[knitty kitty]

@Soleihey,

Do get checked for thiamine deficiency.  Blood tests for thiamine deficiency are not accurate.  You can have "normal" levels in the blood, but still be deficient because thiamine stores inside cells are depleted. 

Thiamine deficiency can cause ataxia, tremor, muscle twitching, leg weakness, constipation, and slurred speech.  I had these symptoms and more that did not resolve with a one a day type vitamin.  I needed high doses of Thiamine to correct the deficiency.  Thiamine is safe and nontoxic even in high doses.  Pregnancy can deplete thiamine stores.  

Interesting Reading:

Thiamine deficiency disorders: a clinical perspective

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

[Soleihey]

What supplement do you use and how much?

[knitty kitty]

I take Life Extension brand Mega Benfotiamine, (250 mg with each of two meals) and Maxlife Natural TTFD-B1 Max Thiamine (100 mg).  

I try to take my Benfotiamine and TTFD before four pm, otherwise I have so much energy, it can be hard to fall asleep.  

 

[Soleihey]

@Scott Adams

Recently got blood work back and TTG antibodies went from 168.8 to 16.7 and deaminated gliadin was 22 (was not measured the first time). Is this a good start for an 11 month time frame? Just having a hard time with why my symptoms seemed to be flaring up again when my blood work has improved. 

[Scott Adams]

Hi @Soleihey, it looks like you are making great progress. 

This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet:

• Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet

However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people.

According to this study:

Quote

After an average of 11 months on a gluten-free diet, 81% of patients with celiac disease and positive tissue transglutaminase IgA (tTG-IgA) at baseline will revert to negative tTG-IgA (SOR: C, disease-oriented evidence from retrospective cohort study). The intestinal mucosa of adult patients with celiac disease will return to normal after following a gluten-free diet for 16 to 24 months in only 8% to 18%. However, in children after 2 years, 74% will have a return to normal mucosa (SOR: C, diseaseoriented evidence from longitudinal studies).