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I Can't Get Diagnosed!

ecitizen

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ecitizen Newbie
ecitizen
Posted

Over the last year, I've experienced small fiber-like neuropathy, mainly in my legs but also arms and face occasionally. It all started out one time after eating at an indian restaurant. I'm a 35 year old male and otherwise in great health. This was a sudden onset. I did every test possible, from B12 to MRIs to all kinds of blood work. The only thing that came out abnormal was a positive gliadin reading of 38. My neuro thought I might have Celiac so I went to a GI specialist. I had an endoscopy and the results were negative for celiac (according to him). So they did a prometheus blood test to check me for a celiac gene called DQ alpha and beta 1. The results say "yes" for celiac gene pairs present. I've been gluten free for about 4 months now and the neuropathy is diminishing, although not completely gone.

My question is could I just have gluten sensitivity and not have Celiac? Are they different? I have no other symptoms.

Thanks.

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ravenwoodglass Mentor
ravenwoodglass
Posted

I do so hate the term 'just gluten sensitivity' it makes it seem that it is less serious than 'celiac'. My primary presenting symptoms for years were neuro damage and the skin form of celiac,DH. Many doctors would consider me to be 'just gluten intolerant' since my blood work has always been a false negative. If you read my signature you will see how serious being 'just gluten intolerant' can be. The damage to my nervous system and other organs was severe long before the typical GI symptoms became more than just an occasional annoyance. You should follow the diet just as strictly as someone who is considered celiac to avoid more damage. Once the neuro damage goes far enough coming back from it can be a process that takes years and if things go on long enough full recovery may never happen. I am glad to hear your neuro issues are improving, it does take time. It took about 2 years for me to regain slight reflexes in my legs but the tingling and numbness impoved within 6 months and in that time I was able to stop using my canes. Keep on the diet and you should continue to improve.

ecitizen Newbie
ecitizen
Posted
  • Author
  ravenwoodglass said:
I do so hate the term 'just gluten sensitivity' it makes it seem that it is less serious than 'celiac'. My primary presenting symptoms for years were neuro damage and the skin form of celiac,DH. Many doctors would consider me to be 'just gluten intolerant' since my blood work has always been a false negative. If you read my signature you will see how serious being 'just gluten intolerant' can be. The damage to my nervous system and other organs was severe long before the typical GI symptoms became more than just an occasional annoyance. You should follow the diet just as strictly as someone who is considered celiac to avoid more damage. Once the neuro damage goes far enough coming back from it can be a process that takes years and if things go on long enough full recovery may never happen. I am glad to hear your neuro issues are improving, it does take time. It took about 2 years for me to regain slight reflexes in my legs but the tingling and numbness impoved within 6 months and in that time I was able to stop using my canes. Keep on the diet and you should continue to improve.

Thanks for your response. Yes, I'm beginning to understand more about this as I go. I'm still "undiagnosed" but feeling more and more confident that my neuropathy is from gluten. I'm hoping it goes away completely eventually, although it is hard not knowing for sure while staying on such a strict diet. Because I have no other symptoms, I'm not sure how I know when even a trace of gluten found its way into my food. I'm doing the best I can on the diet from knowledge I've gained on the internet. I just wish I had a definitive diagnosis. I guess I should be grateful that through all the other tests, I was given a clean bill of health. I'm really disappointed with the whole experience with the healthcare system. If I didn't push, I would have not gotten anywhere.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you feel the strong need for diagnosis another option might be Enterolab, they test for stool antibodies and do genetic testing for all celiac related genes, not just DQ2or DQ8.

homemaker Enthusiast
homemaker
Posted
  ecitizen said:
Over the last year, I've experienced small fiber-like neuropathy, mainly in my legs but also arms and face occasionally. It all started out one time after eating at an indian restaurant. I'm a 35 year old male and otherwise in great health. This was a sudden onset. I did every test possible, from B12 to MRIs to all kinds of blood work. The only thing that came out abnormal was a positive gliadin reading of 38. My neuro thought I might have Celiac so I went to a GI specialist. I had an endoscopy and the results were negative for celiac (according to him). So they did a prometheus blood test to check me for a celiac gene called DQ alpha and beta 1. The results say "yes" for celiac gene pairs present. I've been gluten free for about 4 months now and the neuropathy is diminishing, although not completely gone.

My question is could I just have gluten sensitivity and not have Celiac? Are they different? I have no other symptoms.

Thanks.

Ecitizen..I too can't seem to get diagnosed...and I too had symptoms of neuropathy...Mainly in my legs and face...tingling...and in my feet...all medical avenues came up with nothing...

My mother had what I now think was celiac...the family story goes that she was failure to thrive, almost died and lived on rice gruel and bananas and it saved her life...medicine in the 1920's was not that developed...She died early of an early onset dementia...probably not celiac realted...

My Aunt died of an unknown nuero-muscular disease of unknown origin

My sister has Celiac Dx with Blood work and Endoscopy....

With that history I was not going to wait for a diagnosis...I did the bloodwork it was negative...

But I am NOT going to take any chances....

GOOD for you to going gluten-free!

I am glad that your neuropathy is diminishing!

Personally I just went gluten-free and never will look back...I took charge of my own well being!

Blessings to you!

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