Peripheral Neuropathy

[lance fever myers]

I was diagnosed with Celiac disease seven months ago. Since then I've been gluten-free, and militantly so-- I haven't eaten anything that I haven't prepared myself in my own kitchen. I think it drives my family a little nuts. But anyway, after five months on the diet I was still having abdominal cramps off and on, so my gastrointerologist suggested a low fodmaps diet and prescribed Pamelor. When I got home I looked up Pamelor and realized that he was probably treating me for peripheral neuropathy. I decided not to take the Pamelor and try the low fodmaps diet first. I think that seems to be helping with the abdominal cramps, but I have another problem. I've been having a recurring infection in my epididymis for years and no urologist has been able to figure out why. So then I looked up autonomic neuropathy and found that this can cause recurring infections. Do any of you have any thoughts on this? Could Celiac bring on autonomic neuropathy and indirectly cause me to keep getting epididymitis? Am I onto something here or not?

[mommida]

A doctor had mentioned to me that Celiacs (on a gluten free diet) need to be extra viligent to vitamin B 12 to avoid peripheral neuropathy.

 

It really is impossible to tell you when you are going to be completely healed in your gut from Celiac damage on the gluten free diet.  (Some say 2 years for the residual antibodies to go down to normal)

[cyclinglady]

I have neuropathies which are slowly improving. I suspect they are related to celiac disease or blood glucose spikes (over 140). I would imagine your infections are related to celiac disease. My husband, who has been gluten free for 13 years, has not had a single sinus infection since then. He was plagued with sinus infections and horrible snoring (besides flu-like symptoms and grumpiness).

I have always had an EXCESS of vitamin b-12, so I would not take a supplement until you have been tested for a deficiency. There are over 300 symptoms of celiac disease and I am sure the list is growing!

The fodmaps diet is a good thing. celiac disease can create a variety of temporary or permanent food intolerances. Seven months into the gluten-free is not enough time. It takes up to three years for healing. Most here on this forum see some minor relief within weeks or months, but greater improvement after a year or so.

[lance fever myers]

Thank you for the responses. I am new to the disease and new to forums in general. I appreciate all advice and support.

[cyclinglady]

No problem. You will find that the old veterans on this site often know more than most doctors. Many attend all the U.S. celiac conferences and attend lectures featuring the leading researchers in celiac disease.

We can only offer opinions as we are not medical doctors and diagnosing via the internet would be irresponsible! The one thing we do know is how to handle the day-to-day issues of having celiac disease!

[LauraTX]

Welcome to the forum!

 

I was what was thought to be an asymptomatic Celiac when first diagnosed by accident, but after I went gluten-free my stubborn low iron levels and my unexplained peripheral neuropathy went away.  For me and many others, some symptoms take a very long time to resolve- a year or more.  After about a year gluten-free, my neuropathy only comes back very scarcely and not nearly the severity it was.  So, in your case, it may be that more healing time is needed.  Even though you have been on the right track for 7 months, hopefully it will just take a little more time to get things back to normal.  Definitely keep up with your checkup appointments in the meantime.  

[icelandgirl]

Hi there...I was just coming on to start a thread on Peripheral Neuropathy.  Crazy!

 

I was diagnosed 9 months ago exactly...I'm like you, so gluten free that there is no doubt.  

 

I've had a little PN here and there in my fingers over the years, but in the past 3 weeks it's in my feet constantly...both feet.  It's so completely annoying.  If I'm walking around I don't feel it, but sitting or lying down, it's always there.  I mentioned it to my endo wondering if it could be thyroid related and he said to take B12 and Alpha Lipoic Acid.  The problem for me, that I forgot to mention to him, is that I was tested for B12 in July and it was high.  I tried the ALA twice now and it makes me nauseous.  Ugh.

 

If anyone has any other things that help with this, I'd love to know.  I hope that the low FODMAPS continues to help you...I've heard that it's great!

[lance fever myers]

Can those of you with PN tell me what it feels like? I occasionally get patches of stinging skin with no rash. It usually lasts a few days then goes away. I'm having it right now across my left thigh. It's pretty severe. My sister-in-law told me she thinks I have singles, but with no rash I'm not so sure. Could this be PN?

[cyclinglady]

My PN can be an electrical zap, tingling in legs, numb fingertips and itching but no rash.

I was diagnosed with celiac disease almost two years ago and diabetes a year ago. I am not sure that I can attribute my PN with either one of those disorders. I just do not know.

I had severe electrical jolts (imagine a bee buzzing inside your foot....something from a horror movie) for six months after my gallbladder was removed and that was about 7 years before my celiac disease dx. I think I have had celiac disease for more than 20 years (like so many others), but at the time I just reviewed my hospital records. I was prescribed CIPRO (fluoroquinolones) which now carries an FDA black box warning about PN and spontaneous snapping tendons (which puts fear into a runner's heart). I was pretty sure at the time that CIPRO caused damaged. I have it in my charts now that I am "allergic to it. I will never take that drug. Snapping tendons? No way!

I digressed. Celiac disease is so complicated!

[ravenwoodglass]

Can those of you with PN tell me what it feels like? I occasionally get patches of stinging skin with no rash. It usually lasts a few days then goes away. I'm having it right now across my left thigh. It's pretty severe. My sister-in-law told me she thinks I have singles, but with no rash I'm not so sure. Could this be PN?

You can have shingles with no rash so you should see your doctor to make sure that is not what is going on.

PN usually hits the extremities, hands and feet first.  I don't know if it could present like it is for you.

In my case it was like my hands and feet would 'fall asleep' with that tingling numbness. It was more uncomfortable than painful. The sensation did eventually move up like socks or gloves. Sublingual B12 did help even before I was diagnosed. 

See your doctor and have him run some blood work. Most importantly the B12 levels. If they are below 500 then you will want to supplement. Low B12 can be an issue for us and can contribute to PN in some cases. It would be a good idea to have the doc rerun your celiac panels also to see if your levels are coming down. 

[greenbeanie]

Has your magnesium level been tested? I do not have a clear disgnosis myself, but after decades of symptoms and a daughter who has been officially diagnosed with celiac, I've had immense and life-changing improvements on a gluten free diet. Anyhow, one of my earliest problems was awful hand cramps as a kid. I'm right-handed and it was always worse in my left hand, so it's not like it was from overuse. Then, as a young adult I got this awful tingling/buzzing feeling in one leg. It felt like little seltzer bubbles were constantly popping in my veins - not really painful, but very distracting and unpleasant. It was intermittent at first, but after several years it became constant. I had that electrical stimulation nerve test (I forget what it's called) and it came back normal. I had other balance and coordination problems too, but the buzzing in the leg was distinctive. Of course, none of my doctors at the time even considered the possibility that it could be related to my GI problems and other unexplained symptoms.

But, years later, magnesium supplements cured the tingling and hand cramps! It was amazing. Looking back at old medical records, I actually had tested low in magnesium several times during ER visits years previously. But no one thought it was important, other than to recommend a multivitamin and then laugh and insist I must be mistaking a children's vitamin for an adult one (!) when I said I was already taking one. It wasn't until someone on this forum recommended looking into the magnesium issue a couple years ago that I found my old test results and realized I had a long-documented history of magnesium deficiency. The tingling lessened within weeks when I started on Cal-Mag supplements, and it went away completely in less than a year. My most recent magnesium test was within the normal range while still on supplements. If I stop for more than a few days the tingling comes back, but I no longer take it daily.

Of course, I wouldn't recommend randomly supplementing things without knowing whether you need it. But if you can get your doctor to check magnesium as well as B12, it might be useful. (Like cyclinglady, I too actually had high B12 for unclear reasons, so taking more of that would have been inadvisable for me.)

Good luck!

[lance fever myers]

Thank you for the info. Sounds like my pain may not be PN after all. I have a knee-jerk reaction to health issues now, and tend to blame everything on my Celiac.

[cristiana]

Hi Lance

 

My sympathies as really, until I went gluten-free, I didn't have all the unexplained pains that I do now and I still don't know what to blame: is because I have damage caused by being an undiagnosed celiac for over forty years? Glutening?  Other completely unrelated health conditions?  Old age?!

 

In  my case, PN is tingling, fizzing and buzzing in extremities but also on my ankle and backs of my legs. I had this before DX and still have it now and again, I think if accidentally glutened or have low blood sugar (although I am apparently not diabetic).  

 

I have had burning skin sensations since DX - one doctor thought it was PHN but it is so difficult to prove without a rash.   I have had it wrap around my chest but also around my hip, both left side.  Turns out in the latter case it may have actually been caused by inflammation of the sacroiliac joint which can cause referred burning pain in the groin and thigh.  A chiro suggested this to me (SI pain is common in celiacs apparently).  I jarred the offending joint badly one day by mistake and the symptoms did get a lot better in my hip, although my chest pain still persists to some degree.  I just mention this in case.

[MomBTired]

I'm a newbie here but YES, my son was diagnosed 2 years ago with Celiac and after years of gastro problems and severe pain, can't even touch him, he was just diagnosed with autonomic small fiber neuropathy. But with him, if you look at all the systems with all of these issues, he has pretty much all of them except the girly things.