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SabineHP

Peripheral Neuropathy

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In 2016 I was tested for gluten issues via a blood test and a DNA test. Immediately after, I went off gluten. My doctor said it is safe to say that I have Celica Disease and felt that further testing for confirmation was not necessary, based on the 2 test results + 30 years of (retrospective) health history indicating (undiagnosed) Celiac Disease and significant improvements of symptoms after starting my gluten free journey.
Now, three years later, I seem to be dealing with Peripheral Neuropathy. I've had this in my feet for 10+ years (mentioned the symptoms to past doctors over the years, but no attention was paid to it). As of lately, I have been experiencing signs of PN in my hands as well and this is not only bothersome, but also frightening.
Now I have questions:
1) Is there a form of imaging to confirm PN? If so, what is it?
Furthermore, I am concerned about the potential genetic implications for my daughter and my grandson. 

2) Would testing be beneficial for them, even though they have no symptoms?

3) Can Peripheral Neuropathy be kept at bay, if diagnosis and going gluten free is done EARLY?


4) Would there be any good reason at this point for me to have the scope/biopsy done?
 

Thanks, all feedback welcome and appreciated.

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4 hours ago, SabineHP said:

In 2016 I was tested for gluten issues via a blood test and a DNA test. Immediately after, I went off gluten. My doctor said it is safe to say that I have Celica Disease and felt that further testing for confirmation was not necessary, based on the 2 test results + 30 years of (retrospective) health history indicating (undiagnosed) Celiac Disease and significant improvements of symptoms after starting my gluten free journey.
Now, three years later, I seem to be dealing with Peripheral Neuropathy. I've had this in my feet for 10+ years (mentioned the symptoms to past doctors over the years, but no attention was paid to it). As of lately, I have been experiencing signs of PN in my hands as well and this is not only bothersome, but also frightening.
Now I have questions:
1) Is there a form of imaging to confirm PN? If so, what is it?
Furthermore, I am concerned about the potential genetic implications for my daughter and my grandson. 

2) Would testing be beneficial for them, even though they have no symptoms?

3) Can Peripheral Neuropathy be kept at bay, if diagnosis and going gluten free is done EARLY?


4) Would there be any good reason at this point for me to have the scope/biopsy done?
 

Thanks, all feedback welcome and appreciated.

Just curious, were you treated for GERD as well with something like a proton pump inhibitor like Prevacid? After I was diagnosed with Celiac me and my children were all prescribed Prevacid to aid in the healing of damage to our esophagus. The PPI can cause a B12 deficiency or prevent a healing Celiac from getting enough B12. 

I had a SPECT scan and was told I had white matter brain disease, subsequently I went gluten free, stopped with the Prevacid and a year later another SPECT scan showed no traces of white matter brain disease. 

Another B12 deficiency can be caused by Intrinsic Factor which a doctor can test with a urine sample. 

All first degree relatives should be tested whether symptomatic or not once a person is diagnosed with Celiac disease. 

I hope this helps.

 

 

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Yes, in fact, I was perscribed a purple pill, after a colonoscopy (2001) that showed damage to my esophagus (many years prior to Celiac diagnosis). Was told that taking it for up to 90 days should take care of the problem. Eighteen months later and still taking the purple pill, I was in more agony than ever.  Consulted a nutritionist and off the purple pill shortly thereafter.

Excuse my ignorance, but is PN caused by B12 deficiency?

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It depends on the cause, it can be related to vitamin/mineral deficiencies with B-vitamins, but in cases like mine, it was caused by gluten ataxia. Gluten ataxia the immune system will also attack the brain and or nervous system. In this case, it can show up on an MRI as white spots. Someone will probably link you the medical info I will see if I can find it post it later.

The gluten ataxia in most cases is very sensitive more so than plain celiac. For me, tiny amounts may cause the PN, but a full-on gluten dosing or bad CC case can cause a complete motor control loss for an hour or so and loss of heat/cold sensitivity and pain sensitivity for months. Along with balance issues, coordination issues, etc. 

The B-vitamin issue with b12 primarily is as mentioned above onother common issue, due note do the the nature and soulablity of b-vitamins supplementing 2-3times a day in split doses is suggested. Having celiac also makes this a issue and many do well with supplementing our intakes. I personally take Liquid Health Mega Energy B-complex (Formally called Energy & Stress) and Liquid Health Neurologic 1tbsp each twice a day in a beverage.
I will attach some photos from a medical study guide on Nutrient Deficiencies.
https://imgur.com/a/ELQSTBl

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