Testing For Gluten Ataxia And Neuropathy?

[oyasumi]

Hello all!  This is my first post, though I have visited this forum on and off over the years as I suspected I had celiac disease.  I've struggled for years with IBS, GERD, autoimmune disease, migraines, fibromyalgia, etc.  My doctors also suspected celiac and I have been tested three times in the past 7 years.  Each time my tests were negative.  I haven't received my most recent results (though I was told they were negative), but in 2011 I tested with DirectLabs and the results were tTG IgA (<2), tTG IgG (2), EMA Negative, Deamidated Gliadin IgA (6) & IgG (2), Serum IgA 413 (high).  All antibody results were well within the lab's negative range.

 

Now in addition to the other health problems I have developed serious difficulty with balance, vertigo, nystagmus, paresthesias (extremities, face, occasionally hemiplegic), slurred speech, tremor, weakness, and memory problems.  I went through a similar phase about five years ago including trouble writing, recognizing faces, Alice in Wonderland syndrome, and relentless migraines.  An MRI at the time showed white matter hyperintensities, which were ascribed to the migraines.  A neck MRI showed cervical stenosis so I received physical therapy and acupuncture.  I was living in Japan at the time and none of the doctors knew about celiac disease, but I obtained the Biocard test and tested negative.  Over time my symptoms improved, though the migraines and paresthesias never completely went away.

 

Suddenly in the last two months the neurological problems have appeared in full force and I am currently walking with a cane and not driving.  I had head and neck MRIs last week, which the neuro said were 'normal' except for white matter intensities and signs of cervical stenosis.  He believes, however, that I have gluten ataxia and neuropathy.  I started a strict gluten-free diet six days ago.  I may be noticing an improvement in intestinal symptoms and rosacea but the neurological problems are unchanged (which I assume from my reading on here is normal).

 

Sorry for the long introduction.  My question is, what are my testing options at this point?  Am I right to think that the tTG-6 test is the gold standard in this situation?  Is there anyone out there who actually tests for that?  My doctors have never heard of it, apart from my rheumatologist, and he is not willing to order a test through Cyrex Labs (I am also hesitant in that regard).  

 

Would it be worth it for me to have the old anti-gliadin antibody tests, which I have not had before? How about the genetic tests?  I coincidentally tested myself on AncestryDNA recently and discovered the Promethease site.  If I'm reading it correctly, I think I have at least one of the SNPs for HLA-DQ8, besides a few other SNPs that are associated with celiac or IBD.  I'm trying to understand the genetic stuff, but it's a steep learning curve.

 

I know that I need to be eating gluten for the antibody tests to be accurate.  I'm concerned about my seven-year-old daughter (who has ADHD and NF1) and my mother (who has many problems similar to mine, minus the neurological symptoms), so I'm thinking a genetic test might be helpful.  Otherwise, I can wait six months or a year to see if my neurological symptoms resolve, but I'd like if possible to substantiate the neuro's diagnosis with some testing and use the results to bolster my argument that other family members should be tested.

 

Thank you for reading my lengthy post.  This forum is a great resource and I look forward to getting to know the members.

 

Thanks in advance!

 

Cathy

 

 

 

 

[ravenwoodglass]

You have a very savvy neuro there. It sounds like what your neuro is referring to as 'white matter intensities' are something that are also called UBOs or unidentified bright objects. I had them and my doctor was clueless and it was a few more years before I was diagnosed celiac and could begin to heal. In doing some research a couple years after I was diagnosed I discovered that those lesions are diagnostic of celiac that has attacked the nervous system. I wish I still had links to the articles (I wrote a paper in college on the subject) but they were lost with my last computer crash. If you do a search for UBOs or Neurological effects of celiac there are a few peer reviewed articles in PubMed and other publications of that type.

Interestingly I also showed false negative with blood work. I only had the older tests though so I don't know if I would have been positive on the newer ones. 

You are seeing some positive changes on the diet. That is good. However if you want more antibody testing or to have an endoscopy you need to get back on gluten pronto. Your digestive symptoms may return or escalate but you have to be eating gluten for any more celiac related testing. It sounds like your neuro has basically diagnosed you already though. 

Healing the nervous system can be a slow process. One will heal fully but some with have some residual damage. Have you had your B12 levels checked? If so what were the results? Some doctors consider anything over 250 to be normal but new research says those levels should be at least 500. If your levels are on the low side a sublingual B12 supplement can help with the healing. the dosage will seem high on the bottle but your body will excrete any that it doesn't need. 

I found physical therapy to be very helpful and if your doctor hasn't already given you a script for it you might want to ask for one. 

I hope you heal quickly but be patient. I, like you, was on canes at diagnosis and used walls and furniture to get around the house. Things got better slowly but one day about 6 months post diagnosis I heard a noise and without thinking ran upstairs. I realized what I had done when I got to the top and sat on the stair and bawled like a baby.  I still had years of healing ahead but that day gave me back hope that I would someday be close to normal physically again. 

Hang in there and there is no reason not to ask your ped to screen your daughter. You should encourage your Mom to get tested also. If she is reluctant at first that may change as she sees you recover your health. 

Welcome to the board. Read the Newbie 101 thread at the top of the Coping section and ask any other questions you need to ask.

[Tigger 68]

  On 12/14/2014 at 4:31 PM, oyasumi said:

Hello all!  This is my first post, though I have visited this forum on and off over the years as I suspected I had celiac disease.  I've struggled for years with IBS, GERD, autoimmune disease, migraines, fibromyalgia, etc.  My doctors also suspected celiac and I have been tested three times in the past 7 years.  Each time my tests were negative.  I haven't received my most recent results (though I was told they were negative), but in 2011 I tested with DirectLabs and the results were tTG IgA (<2), tTG IgG (2), EMA Negative, Deamidated Gliadin IgA (6) & IgG (2), Serum IgA 413 (high).  All antibody results were well within the lab's negative range.

 

Now in addition to the other health problems I have developed serious difficulty with balance, vertigo, nystagmus, paresthesias (extremities, face, occasionally hemiplegic), slurred speech, tremor, weakness, and memory problems.  I went through a similar phase about five years ago including trouble writing, recognizing faces, Alice in Wonderland syndrome, and relentless migraines.  An MRI at the time showed white matter hyperintensities, which were ascribed to the migraines.  A neck MRI showed cervical stenosis so I received physical therapy and acupuncture.  I was living in Japan at the time and none of the doctors knew about celiac disease, but I obtained the Biocard test and tested negative.  Over time my symptoms improved, though the migraines and paresthesias never completely went away.

 

Suddenly in the last two months the neurological problems have appeared in full force and I am currently walking with a cane and not driving.  I had head and neck MRIs last week, which the neuro said were 'normal' except for white matter intensities and signs of cervical stenosis.  He believes, however, that I have gluten ataxia and neuropathy.  I started a strict gluten-free diet six days ago.  I may be noticing an improvement in intestinal symptoms and rosacea but the neurological problems are unchanged (which I assume from my reading on here is normal).

 

Sorry for the long introduction.  My question is, what are my testing options at this point?  Am I right to think that the tTG-6 test is the gold standard in this situation?  Is there anyone out there who actually tests for that?  My doctors have never heard of it, apart from my rheumatologist, and he is not willing to order a test through Cyrex Labs (I am also hesitant in that regard).  

 

Would it be worth it for me to have the old anti-gliadin antibody tests, which I have not had before? How about the genetic tests?  I coincidentally tested myself on AncestryDNA recently and discovered the Promethease site.  If I'm reading it correctly, I think I have at least one of the SNPs for HLA-DQ8, besides a few other SNPs that are associated with celiac or IBD.  I'm trying to understand the genetic stuff, but it's a steep learning curve.

 

I know that I need to be eating gluten for the antibody tests to be accurate.  I'm concerned about my seven-year-old daughter (who has ADHD and NF1) and my mother (who has many problems similar to mine, minus the neurological symptoms), so I'm thinking a genetic test might be helpful.  Otherwise, I can wait six months or a year to see if my neurological symptoms resolve, but I'd like if possible to substantiate the neuro's diagnosis with some testing and use the results to bolster my argument that other family members should be tested.

 

Thank you for reading my lengthy post.  This forum is a great resource and I look forward to getting to know the members.

 

Thanks in advance!

 

Cathy

I WAS DIAG. WITH CELIAC MANY YEARS ( I AM 66)  AGO...I STARTED TAKING 3000 MCG OF SUBLINGUAL B-12..IT GOES UNDER TONGUE EVERY MORNING ABOUT 6 MONTHS OR MORE AGO.....IT HAS REALLY HELPED MY NEUROAPATHY .AND HEALING OTHER STUFF....IF YOUR BODY CANNOT USE B-12 YOU JUST URINATE IT OUT.....I WILL NOT QUIT TAKING IT NOW.....I DO NOT GET EXHAUSTED ANY MORE EITHER

[oyasumi]

Thank you for the welcome and all the information!  My B12 was 410, so I'll try the sublingual B12.  My vitamin D was also low, despite taking 4000 IUs daily for the past year (it came up from 19 to 25 but I think it needs to be much higher).   I have an appt with my PCP tomorrow to go over all this.

 

Ravenwoodglass, I was touched by your story.  I actually read a few of your posts earlier today and was hoping you would reply.    I have a referral for PT for balance issues from another neuro (who I 'fired') and will follow up with that.

 

I don't think the tTG-6 is readily available yet, so I've decided to ask my PCP to run the old AGA tests tomorrow.  I saw a study done at Tripler Hospital in Hawaii where they were able to diagnose a small number of people who had tested negative to the tTG using the AGA. (Open Original Shared Link  I will have been off gluten one week tomorrow, which according to the EnteroLabs site should still be ok for the AGA blood test.  I'll also ask about the genetic testing.  I convinced my mom to ask for the celiac panel tomorrow at her gastro appointment.  Kind of surprised they didn't already do it since she has Hashimoto's, IBS, GERD,  migraines, and early osteoporosis.  

 

Anyway, thanks again for the responses.  I'd love to hear if anyone else has any advice or knows where to get the tTG-6 test!