Significance Of Test Results

[GF Hoagie]

Hello all! I am happy to be here. And hoping to get some answers from such a knowledgeable group of individuals.

I have tested positive for the Celiac gene. I tested a little while back. I also tested positive for Lyme disease and reactivated EBV. So, it's kinda difficult to know what is causing what.

Anyhow, the neurologist office I was going to had 2 PAs working under him. One of the PAs was my doctor, and I have little faith in his knowledge of some of these conditions. He looked at my test result for Celiac and said that I was on the spectrum. He made it sound like it wasn't a huge deal, but it would be a good idea to avoid gluten. 

So, I'm hoping some of you can shed light on the severity of my result.

Celiac Disease DQ2 (DQA1 0501/0505, DQB1 02XX) - Positive

The reason for my initial doctor's visit was ataxic symptoms while walking, migraines with aura, numbing and tingling in left arm and left side of face. I had assumed this was all Lyme related. But, this has been a year now, and while the neuropathy subsided, the ataxia has not. I was pretty strict on the gluten free diet for a while. But, I really wanted to see if I was truly reactive to gluten. So, a week ago, I ate 2 muffins. No real increase of symptoms.... BTW, I've never really had any gastrointestinal symptoms after eating gluten. So, I had a muffin yesterday. And today I got a little numbing and tingling on the left side of my face. Now, I expect gluten has played a large part in my current neurological state, whereas I thought it was mainly due to lyme. I had been neuropathy free for 6 months prior to today.

 

If my ataxia is due to gluten, will it improve over time on a strict gluten-free diet?

Edited February 4, 2019 by GF Hoagie

[Sienna2013]

Sorry, is your only test result this one - "Celiac Disease DQ2 (DQA1 0501/0505, DQB1 02XX) - Positive"? 

IANAD, but that shows that you have the genetics - it doesn't show anything else. (About 30% of the population has the genetics. It's not the same as having activated into celiac.)

If they've run blood labs, you can post your results here to get people's opinions. If they haven't run blood labs, then that's probably your next step. 

[cyclinglady]

I am sorry that you received such poor advice.  About 35% of the population has the genes that could develop into celiac disease.  Only a few actually go on to develop celiac disease though.  The gene test helps rule out celiac disease, but not to diagnose it (as always there are a few exceptions).

Celiac disease testing requires you to be on a gluten diet.  The blood test measures antibodies and the intestinal biopsies look for damage.  If you are gluten free, the tests will not be accurate.  

 http://www.cureceliacdisease.org/screening/

You could consider a gluten challenge, which should be under a doctor’s care, especially if you suspect gluten ataxia.  

https://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

neurological damage from celiac disease can take a year or longer to heal based on what I have seen on this forum.  The gluten free diet has a huge learning curve.  Most likely a VERY strict diet is required.  I urge you to research this more.  There is a doctor in the UK who has conducted the most research on gluten ataxia.  It would be a good place to start.  

 

[GFinDC]

Hi gluten-free Hoagie,

Nerve symptoms seem to be slow to resolve.  It may take quite a while for them to go away.  Celiac disease is an autoimmune condition.  That means the bodies own immune system attacks and does damage to the body cells.  It can take months for the immune system to stop attacking once it is activated.  And the immune system is very sensitive and can react to very small amounts of gluten.  So small slip-ups are a bad thing.

If you are pretty sure your ataxia symptoms are reacting to gluten in your diet, then I would hesitate to do a gluten challenge.  The damage may or may not heal, and the time for healing can be long.  Possibly years long.

There are multiple threads on the forum talking about gluten ataxia.  It might be helpful to read through some of them.

Edited February 5, 2019 by GFinDC

[Ennis-TX]

The ataxia issues are scary and represent in various and seemingly evolving ways. I could deal with the gut issues...I grew into them and thought the constipation. vomiting, pain were "normal" the later ataxia .... yeah.  My stuff progressed slowly and a bit differently with exposures, at the worst it was causing brain and nerve damage. Looping thoughts that would not stop looping over and over and not able to move on like a broken record. Going to do something and knowing how to do it but not being able to communicate to your body to do. Things you knew like words, language, skills...that just no longer made sense. Numbness and tingling in hands and feet all the way to full motor control loss and being stuck on the floor

The brain looping went away after a year and never came back. The skills I used to know...never came back and still can not learn computer programing anymore (supposedly brain damage). The motor loss only come after certain levels of exposure, minor exposure is more balance, dropping things, unsteady. Fog also comes and goes with these minor exposures. After over 5 years I am getting back my sense of hot/cold in my hands and feeling when I crush or cut my hands nerve damage is quite slow to heal.

They say the ataxia can be seen on a MRI as white spots on the brain, I used to have some studies on this. I use multile supplements like magnesium, full spectrum b-vitamins, and stuff for nerve support and blood flow to try to promote healing...no clue how much it really speeds up the process.

[GF Hoagie]

Thanks for the responses!

 

Ennis, my MRI showed several non specific lesion in the white matter. But, I also have an enhancing lesion in between my cerebellum and midbrain. The doctors are not sure what has caused it, but it seems there has been inflammation surrounding the lesion for over a year now. While it is inflamed, it is stable. They are not sure if it's vascular, infectious, viral, or what. I tend to think it's autoimmune from gluten. But, I'm not sure. All I know is since eating those muffins, the left side of my face has become tingly again. My mobility has not been the same since it first went south over a year ago. I'm hoping the inflammation with go down at some point and my mobility will improve. But, it's been so long now, it's hard to imagine there isn't permanent damage.

Edited February 4, 2019 by GF Hoagie

[ravenwoodglass]

46 minutes ago, gluten-free Hoagie said:

Thanks for the responses!

 

Ennis, my MRI showed several non specific lesion in the white matter. But, I also have an enhancing lesion in between my cerebellum and midbrain. The doctors are not sure what has caused it, but it seems there has been inflammation surrounding the lesion for over a year now. While it is inflamed, it is stable. They are not sure if it's vascular, infectious, viral, or what. I tend to think it's autoimmune from gluten. But, I'm not sure. All I know is since eating those muffins, the left side of my face has become tingly again. My mobility has not been the same since it first went south over a year ago. I'm hoping the inflammation with go down at some point and my mobility will improve. But, it's been so long now, it's hard to imagine there isn't permanent damage.

Those white matter lesions are likely UBOs or Unidentified Bright Objects. They are associated with antibodies that are attacking the nervous system. There has been research done that is able to be found on sites like the NIH. Don't lose hope, keep seeing your PT and working hard and most of all have patience. I had my first symptoms of ataxia in childhood and by the time I was finally diagnosed my impact was severe. I was misdiagnosed for over 40 years. I healed for the most part but it took being very strict with the diet and lots of PT but within 6 months I could walk unaided and tell you a fork was a fork if you held it up in front of me. It was about 5 years before I finished healing as much as I will heal but I am able to lead a pretty much normal life and was able to finish my degrees with honors (after having to drop back out again one last time). 

Hang in there.