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Hi all. I'm new here. I have not been diagnosed with celiac as my TISSUE TRANSGLUTAMINASE AB IGA was negative, but my anti gliadin IgA was positive and I don't really know what this means. I have been having issues with idiopathic neuropathy so my neurologist tested all gluten/celiec blood markers and the only one that came back positive was the anti-gliadin IgA.

According to the neuro this doesn't really mean much (not sure why he tested it then) ? I can't find a whole lot about it online either. I also have rheumatoid arthritis but the neuropathy is not linked to my RA. I've been iron deficient anemic most of my life. I've always had stomach issues (IBS?) I don't really know what to think or if this really means anything.

I've been diagnosed so far with small fiber idiopathic neuropathy. I'm assuming it's some kind of autoimmune mediated neuropathy, but would it be worth a try going on a strict gluten free diet for a year or so? I guess I have nothing to lose at this point but it would be a lot of work. I just wish I knew somehow before I ventured into a new lifestyle and replaced all of my kitchen stuff. (but beggars with nerve damage can't be choosers, I guess) :lol:

Anyway, any opinions or advice would be lovely. Thank you! 

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Welcome. Not everyone shows positive on all the tests in the celiac panel. It is quite significant (IMHO) that you did have a positive result anti gliadan test. Can you, or have you, seen a GI doctor? If you haven't since you got the celiac blood results it might be a good idea. When you do make sure you bring copies of that blood work with you.  Then after all your celiac related testing is done do give the diet a good strict try.  Also, did your neuro do an MRI? Some of them don't realize that UBOs (look like white spots on the MRI), are associated with celiac.  I know mine didn't.

 

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I agree with Ravenwoodglass.  See a GI for further testing....and this is important, stay on gluten until all testing is complete.

Like you, I tested positive to the DGP IgA only.  My TTG tests were both negative (I am not IgA deficient, so all the IgA tests for celiac should work).  Even in follow-up testing my TTG is negative.  Now my GI saves money and does not bother even ordering it.  I do have Hashimoto's Thyroiditis and was anemic.  I did not have gut issues when I was tested (went in for a routine colonoscopy because I hit 50).  Biopsies revealed moderate to severe damage.  

This is genetic, so get your first -degree relatives tested (encourage is the better word).  

I wish you well.  

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I concur with raven & cyclinglady.

I will repeat.....

CONTINUE EATING GLUTEN UNTIL ALL TESTING IS FINISHED INCLUDING AN ENDOSCOPIC BIOPSY.

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6 hours ago, ravenwoodglass said:

Also, did your neuro do an MRI? Some of them don't realize that UBOs (look like white spots on the MRI), are associated with celiac.  I know mine didn't.

 

Thanks for your response! I actually did have a brain MRI done because neuro was thinking MS due to other ataxia symptoms (like falling over, failed the finger to nose test, failed the romberg test, etc.) and then of course the neuropathy (numb feet, burning legs, tingling, etc.), but I'm extremely claustrophobic so I had to have it done in one of those open-sided machines, not sure if they are as good. They used contrast and it did pick up a few white spots that the neurologist assured me were not in the realm of MS related brain lesions, but he explained them as "brain wear and tear" - seems weird to me because I'm only 31 but what do I know? 

He also did refer me to a GI, but I haven't scheduled it yet. I will now, as I would like to have the biopsy done. 

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5 hours ago, cyclinglady said:

I agree with Ravenwoodglass.  See a GI for further testing....and this is important, stay on gluten until all testing is complete.

Like you, I tested positive to the DGP IgA only.  My TTG tests were both negative (I am not IgA deficient, so all the IgA tests for celiac should work).  Even in follow-up testing my TTG is negative.  Now my GI saves money and does not bother even ordering it.  I do have Hashimoto's Thyroiditis and was anemic.  I did not have gut issues when I was tested (went in for a routine colonoscopy because I hit 50).  Biopsies revealed moderate to severe damage.  

This is genetic, so get your first -degree relatives tested (encourage is the better word).  

I wish you well.  

Thank you so much for the information. I really don't have major gut issues either, just random stomach aches and bouts of D. But I'm a nervous person, swear I was born with anxiety, and I call them the nervous poops. (tmi) If I did have celiac, or even a gluten sensitivity, a lot of things would fall into place. I will get into GI ASAP and will keep eating gluten until all is said and done. 

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Hah! nervous poops......

That's what we thought my husbands were & in between when he was constipated, we thought that was the opposite b/c he'd been through so much nervous pooping that he was emptied out for a while. Wrongo! Celiac was the culprit for both. 

There are some 300 symptoms associated with celiac disease. 

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5 hours ago, karilynn85 said:

...They used contrast and it did pick up a few white spots that the neurologist assured me were not in the realm of MS related brain lesions, but he explained them as "brain wear and tear" - seems weird to me because I'm only 31 but what do I know? 

...

Well, brain wear and tear, that sure explains it!  :) I suppose that's what boxers get too!

I hope you got copies of your MRI scans to show another nuerologist who is familiar with celiac disease damage.  I am not sure if they have a blood test for gluten ataxia yet, but maybe it's worth asking him about.

You can read up on this Dr. Hadjivassiliou feller to find more info on gluten ataxia.  your nuerologist might want to read up on his research also.

***********************************************

Dr. Hadjivassiliou

Nuerological symptoms without gastro symptoms
http://www.ncbi.nlm.nih.gov/pubmed/20170845

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Just to add that  Dr. Hadjivassiliou published this article: http://www.acnr.co.uk/pdfs/volume2issue6/v2i6reviewart2.pdf that outlines how gluten sensitivity can cause neurological symptoms without detectable enteropathy in the gut. So as above, once celiac diagnosis is complete do please give the diet a try regardless.

My experience is that once gastro's have excluded celiac they lose interest because their disease is excluded. But for me, with primarily neurological symptoms but negative biopsy the gluten free diet was very effective. Symptoms which improved or resolved include ataxia, arthritic pain, nerve twitching, muscle spasms, depression, eyesight issues and 'brain fog',

Best of luck :)

 

 

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13 hours ago, karilynn85 said:

Thanks for your response! I actually did have a brain MRI done because neuro was thinking MS due to other ataxia symptoms (like falling over, failed the finger to nose test, failed the romberg test, etc.) and then of course the neuropathy (numb feet, burning legs, tingling, etc.), but I'm extremely claustrophobic so I had to have it done in one of those open-sided machines, not sure if they are as good. They used contrast and it did pick up a few white spots that the neurologist assured me were not in the realm of MS related brain lesions, but he explained them as "brain wear and tear" - seems weird to me because I'm only 31 but what do I know? 

He also did refer me to a GI, but I haven't scheduled it yet. I will now, as I would like to have the biopsy done. 

Brain 'wear and tear' huh so what did he attribute your neuro symptoms to?  Mine told me I wanted to be sick so here's a Prozac. 

Do make that appointment with the GI and keep eating gluten until your testing is finished.

By the way there is a gene that has been newly recognized as a celiac associated gene, DQ9, (I have 2 copies of it) that in the US is commonly considered a gene for RA.  I had severe joint impact that resolved slowly but did resolve. Not saying that will be the case for you but if the doc wants to do gene testing don't let them convince you it can't be celiac if you don't have one of the two most common genes. It is rare but I had a biopsy and blood positive adult child who had her celiac diagnosis taken away a few years after she was diagnosed because she, like me, is a genetic oddball. 

Do get on the diet after celiac testing is done. Neuro symptoms can take some time to heal . I found physical therapy to be very helpful in helping me to overcome the balance issues. I also had one leg that wasn't getting the nerve signals properly so I kind of dragged it and the PT helped me regain a normal gait. I also took a sublingual B12 for quite a while and that seemed to help with the tingles and numbness.

Good luck and I hope you get some answers soon and can begin healing.

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Consider taking some sublingual B Complex, if you have some sort of malabsorption issues then you may be deficit which would contribute to neuropathy. 

Hashimoto's thyroid can also cause brain problems so you might want to get tested for antithyroid bodies.  I had no luck with regular doctors but the Allergist I'm seeing was totally unphased by my catalog of woes and weirdness and ordered the tests for Hashimoto's and celiac. 

Also Hashimoto's can cause things like panic attacks and anxiety.

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