Gluten Ataxia?

[calweinert]

On 5/11/2018 at 12:21 PM, calweinert said:

alright soo its been awhile now i am driving i feel good most everything has recovered but im still left with a slurred speech? has anyone else had this reaction to gluten or am I alone?? its gotten better tho although it comes a problem if im nervous and such???

 

[calweinert]

On 5/11/2018 at 12:21 PM, calweinert said:

I was curious if I am the only one suffering from slurred speech issues as a part of gluten ataxia??

 

[Sig]

On 7/7/2018 at 1:16 PM, calweinert said:

 

Since the cerebellum is damaged w gluten ataxia you can also have slurred speech. I have it plus wobbly legs and lack of coordination. And the cerebellum is also the gatekeeper for stimuli that are incoming so if there is damage you will have anxiety and get overstimulated and all that makes the symptoms worse...I myself have made progress it is very slow though , years not month..but I guess it depends on the amount of damage. Good luck!

[jeriM]

Hello Everyone, 

I'm wondering if gluten ataxia is responsible for a symptom I'm having.  Learning more about Celiac, I think I've had it most of my life, but I was always told it was IBS or something or other, even though my older sister had Celiac. 

Last October everything came to a head when I had severe stomach cramping, pain, and diarrhea so severe I was losing about a half a pound a day.  I had to demand attention from my doctor and FINALLY got a blood test for Celiac, the results of which, according to the doctor, was 'off the chart'.  At that point, I was living on tea and yogurt, the only things that didn't hurt.   My symptoms gradually improved.

The G.I. guy wants to do an endoscopic biopsy after 6 weeks of full-on gluten indulgence.  I'm not going to do that and poison my body further, as I understand there is a very good and clear blood test to diagnose - right?

I've been learning about gluten and how many foods mimic the protein of wheat gluten, trying to eliminate anything and everything that could cause a reaction.  Still, I'm may not be 100% gluten-free because I probably have not found every single food that can cause problems.  It's difficult, even with focus because it seems everyone's sensitivity is a bit different and what one person can get away with eating, like corn, may not be tolerated by my system.

The symptom I'm having now sounds like a mild ataxia, but it's only inside my head/vision, not connected with gait.  It feels like my vision is vibrating.  That's the best i can describe.  I've told my doctor, but she wants to see me when it's happening.  That's really not possible.  It's not all the time.  It comes and goes, lasting for a couple of minutes, then clearing.  Does anyone else recognize this symptom?  

I can relate to a lot of what I'm reading on this forum, like peripheral neuropathy, osteoporosis, hand tremor, and etc.   Thank you all for posting here.  It's been such a help for someone new to discovering all about this disease that it seems doctors ignore.

[trents]

You said, "I had to demand attention from my doctor and FINALLY got a blood test for Celiac, the results of which, according to the doctor, was 'off the chart'". 

And you also said, " . . . as I understand there is a very good and clear blood test to diagnose - right?"

Sounds like you already had that done. What exactly was the test that was "off the chart"? Can you look in your records and give us some more specifics?

[jeriM]

49 minutes ago, trents said:

You said, "I had to demand attention from my doctor and FINALLY got a blood test for Celiac, the results of which, according to the doctor, was 'off the chart'". 

And you also said, " . . . as I understand there is a very good and clear blood test to diagnose - right?"

Sounds like you already had that done. What exactly was the test that was "off the chart"? Can you look in your records and give us some more specifics?

Those were the doctor's words (by phone) after the test.  Looking back at testing records.... can you tell me what the test would be called or what I'm looking for?   thanks

[trents]

4 minutes ago, jeriM said:

Those were the doctor's words (by phone) after the test.  Looking back at testing records.... can you tell me what the test would be called or what I'm looking for?   thanks

The most common test run for detecting celiac disease is the tTG-IGA (stands for Tissue Transglutimase Immuno Globlulin Antibody or something similar. There are others that can be run but that is considered the centerpiece. Can you just look at your test results, either hard copy or online, and post them?

[Wheatwacked]

In the US an official medical diagnosis of Celiac Disease still requires a biopsy of the small intestine, or a skin biopsy if you have a rash that could be dermatitis herpetiformis. In the UK under COVID protocols if you are under 55 and you have symptoms consistant with Coeliac Disease and your IgA ttG test is greater than 10X the Upper Limit of Normal and a positive EMA test is sufficient.  COVID-19 Non-biopsy policy for adults with positive coeliac serology  That's why the test results and the reference range of the tests are important.  Talk to your doctor about maybe skipping the biopsy. Any vitamin and mineral tests also are helpful.

Celiac Disease & Vitamin Deficiencies: Facts You Should Know

 

[jeriM]

13 minutes ago, jeriM said:

Those were the doctor's words (by phone) after the test.  Looking back at testing records.... can you tell me what the test would be called or what I'm looking for?   thanks

Thank you Trent,  I looked up what tests I should find in my records and couldn't find any results, so I wrote to my gastroenterologist to inquire.  Thanks

[knitty kitty]

@jeriM,

Getting an endoscopy now would give your doctor a baseline with which to compare future endoscopies to track healing.  However, "the first do no harm" part seems to get lost with Celiac Disease because doctors don't realize how debilitated we can get when exposed to gluten.  Some doctors will make a diagnosis of Celiac based on high blood tests, or a positive DNA test for the most common Celiac genes and positive response to a gluten free diet.   

That vision vibration you are having sounds like the nystagmus I have experienced.  Mine was due to Thiamine deficiency.  

Your doctor may be able to evoke nystagmus occurring by having you look out of the corners of your eyes (all the way to the left or right) and turning your head sharply rapidly in the opposite direction.  

This scientific study might be of interest to you and your doctor.

Vestibular signs of thiamine deficiency during the early phase of suspected Wernicke encephalopathy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6082353/

 

Celiac Disease damages the small intestine preventing absorption of essential vitamins and minerals resulting in malnutrition.  Thiamine is one of the eight essential B vitamins.  Thiamine deficiency symptoms include gastrointestinal upsets, diarrhea, cramping and bloating (gastrointestinal beriberi),  sudden weight loss, peripheral neuropathy, muscle tremors, nystagmus and more.  

The erythrocyte transketolase test can check for thiamine deficiency.  Testing for and correcting nutritional deficiencies is part of proper follow up care for Celiac Disease.  Supplementing with B Complex, magnesium,  and Vitamin D is beneficial during the early healing months.

I followed the high dose Thiamine supplementation (500-1500 mg/day) in order to correct my Thiamine deficiency.  I also supplemented all eight B vitamins and magnesium.  

I also follow the Autoimmune Protocol Diet (AIP) which has been scientifically proven to reduce inflammation and promote healing.  It's basically meat, veggies and some fruits.  Nothing packaged, nothing processed.  No legumes, no nightshades, no grains, no dairy.  It has helped me immensely.  

I hope this helps!  Please keep us posted on your progress.  

[jeriM]

Thank you so much Knitty Kitty.  I'll check out the links.  I really appreciate your input.   

I still have not heard from my G.I. doc as to what test was given in December.   I have no plans to get the endoscopy as my symptoms are not yet resolved and I have no wish to go back to what I went through last fall, and potentially cause even more damage.   I'd like to get a genetic test.  That sounds reasonable.    Thanks.

[C4Celiac]

i have the eye thing too...  got better after being off gluten for over a year..

[jeriM]

On 5/11/2022 at 10:42 AM, trents said:

The most common test run for detecting celiac disease is the tTG-IGA (stands for Tissue Transglutimase Immuno Globlulin Antibody or something similar. There are others that can be run but that is considered the centerpiece. Can you just look at your test results, either hard copy or online, and post them?

My results for the tTG-IGA:   TTG IGA  96.1 High    DGP IGA   >250.0 High

 

[trents]

40 minutes ago, jeriM said:

My results for the tTG-IGA:   TTG IGA  96.1 High    DGP IGA   >250.0 High

 

jeriM, the numbers look high enough to be pretty conclusive for celiac disease but without the reference ranges for what the lab used as negative vs. positive, we can't say for certain. Labs used different reference ranges so can you post those as well?

[jeriM]

Sorry I didn't include the reference ranges.  I simply assumed (as dangerous as that is...) that the ranges were standard.   mine were:

TTG IGA  ,=14.9 U/mL       96.1 High (H)

DGP IGA = 14.9 U/mL      .250.0 High (H)

Unfortunately they didn't include the TTG+ DGP AB INTPN    it just said "See note" but didn not include the note.

[trents]

Your numbers are unequivocal for celiac disease. I see no reason for you to have an endoscopy/biopsy. But you do need to concentrate or cleaning up any remaining cross contamination sources of gluten and identifying any other food intolerance crossovers you may have.

[knitty kitty]

An endoscopy WITHOUT consuming gluten for 6-8 weeks before would give the doctors a better idea of the damage already done, a baseline by which future endoscopies could be measured.  

But just for diagnostic purposes, with blood tests results so high, that seems unnecessary.  

[jeriM]

Thank you Knitty Kitty,  that is something I hadn't thought about.   It's a good point that I will bring up to my gastroenterologist.   I've been very circumspect about eliminating any and all forms of gluten since December, so I'd really hate to have to do a gluten challenge before an endoscopy.   I expect that healing, after years of not being diagnosed, takes time.   Thank you (all) again for your words of wisdom and advice.  

[C4Celiac]

when my symptoms first started...  I would feel like I was going to fall to my left or right all of sudden while walking. I never actually fell just had the sensation. That went away after a few months off gluten.  Still have a mild dizzy feeling..  my TTG IGA is at 8 now.. down from 100+..  its still 5 points away from normal.. so I hope everything goes away completely once its in normal range

[knitty kitty]

7 minutes ago, C4Celiac said:

when my symptoms first started...  I would feel like I was going to fall to my left or right all of sudden while walking. I never actually fell just had the sensation. That went away after a few months off gluten.  Still have a mild dizzy feeling..  my TTG IGA is at 8 now.. down from 100+..  its still 5 points away from normal.. so I hope everything goes away completely once its in normal range

Yes, vestibular systems seem to be affected by gluten.  Insufficiencies in Vitamin D, Niacin, B12 and Thiamine HCl can all produce imbalances.