Does internal damage need to mend before neuropathy symptoms ease?

[SueMD]

hi all, I've had a recent diagnosis of coeliac. I'd been pretty careful since the biopsy but super careful since the result (including throwing out old foods, kitchen equipment, etc). I eat nothing that I've not made myself (am lucky to work from home), and it's all whole foods, nothing pre-prepared at all. In terms of my guts the results have been amazing - I'm tempted not to even write it down as fear I will be tempting fate   - it's such a huge difference (within 2 weeks).

However a recent-ish symptom (over the last few months) of numb/burning/tingling fingers and toes actually seems to be getting slightly worse. Would I be right in thinking that these sort of neuropathic symptoms are dependent on a healed gut to recover? And I assume that even if my diarrhoea isn't happening, it will take longer for the gut to be healed?

I'm feeling slightly freaked about the fingers/thumbs as my mother had a (never-diagnosed) neurological condition which started this way 40 years ago, and ended up with her completely immobile. She died 25 years ago, aged 57, and was always a total mystery to the doctors. I have absolutely no idea if she was tested for celiac disease and whether the link to neurological symptoms had been made at that time - but it is rather on my mind recently. Tho maybe it wouldn't be possible for celiac disease to make someone so ill? I do know I need to let this one go  

Any thoughts on how long (and also how) neuropathic symptoms get better?  I assume it will depend on how bad the damage? I'm still waiting for my post-diagnosis follow up appt so should know more about the level of damage then I assume.

thanks in advance

Sue 

[cyclinglady]

13 minutes ago, SueMD said:

hi all, I've had a recent diagnosis of coeliac. I'd been pretty careful since the biopsy but super careful since the result (including throwing out old foods, kitchen equipment, etc). I eat nothing that I've not made myself (am lucky to work from home), and it's all whole foods, nothing pre-prepared at all. In terms of my guts the results have been amazing - I'm tempted not to even write it down as fear I will be tempting fate   - it's such a huge difference (within 2 weeks).

However a recent-ish symptom (over the last few months) of numb/burning/tingling fingers and toes actually seems to be getting slightly worse. Would I be right in thinking that these sort of neuropathic symptoms are dependent on a healed gut to recover? And I assume that even if my diarrhoea isn't happening, it will take longer for the gut to be healed?

I'm feeling slightly freaked about the fingers/thumbs as my mother had a (never-diagnosed) neurological condition which started this way 40 years ago, and ended up with her completely immobile. She died 25 years ago, aged 57, and was always a total mystery to the doctors. I have absolutely no idea if she was tested for celiac disease and whether the link to neurological symptoms had been made at that time - but it is rather on my mind recently. Tho maybe it wouldn't be possible for celiac disease to make someone so ill? I do know I need to let this one go  

Any thoughts on how long (and also how) neuropathic symptoms get better?  I assume it will depend on how bad the damage? I'm still waiting for my post-diagnosis follow up appt so should know more about the level of damage then I assume.

thanks in advance

Sue 

I have tingly legs and feet.  I am not sure when it all started.  When I was diagnosed, anemia was my main symptom.  I had no tummy issues except when I ingested a food that did not agree with me (e.g. lactose, nuts, garlic -- lactose completely resolved).  Luckily, my GI (was in for a routine colonscopy 'cause I'm in the "over 50 club") was savvy enough to order a celiac panel.  (I guess little lady was another clue.)  

Anyway, my doctor tested me for a B-12 deficiency but my results were off the charts (high).  They have since come down since I ceased putting soymilk in my coffee (B-12 is added to most soymilk), but it took two years!  My nerve issues seem not to be related to B-12, but you should be checked as this is a common deficiency and a common symptom).  

My tingly legs got worse last summer when I was glutened by an unknown source.  So many things went wacky as a result, so I am not sure if it is celiac-related (I have Hashi's too).    I still get tingly legs.  I have them every day.  I just ignore it.  From what I read, it can be diabetes-related, but I have excellent control (test now as non-diabetic).    I also read that nerve damage can be permanent or take a very, very long time to heal. I also read that it could be just another autoimmune disorder.  (I am not going to panic about the last possible diagnosis.)    I'm going to blame celiac disease.  I did travel out of the country for five weeks this summer.  I believe I did not get glutened, but since my symptoms change, who knows?  So, for now, I'll wait it out.  I did go for my annual follow-up testing and yes, I confess, that my antibodies were high.  What I did not do was to check before I went on my trip.  Were they still high before I left?  (I did not eat out for an entire year).   Is this a confirmation that I got glutened again? Are my antibodies taking forever to come down (they were seriously off the charts last summer).   Who knows?  My GI thinks it's just taking a long time for them to come down.    Next year, I'll get a celiac disease panel run before I travel and after to confirm.  

In the meantime, I'll just wait it out.  My last check-up showed up that I am "healthy".  I am still moving (riding my bike) and that's a great sign!  

 

[cstark]

Hey, Sue.  I am not for certain if the sensations you are feeling in fingers/toes are connected to celiac.  However, nerves take a lot longer to heal than other organs of the body, mainly because they don't have any blood supply to promote healing.  Before I went of gluten, I was so off balance and vision field was so screwed up I was literally bumping into walls and other items.  I was stumbling on my own feet, (more so than I usually do).  I was having episodes nearly every day in varying degrees.  I couldn't focus and my concentration was as a small as a goldfish's. Since I went off gluten, these neuropathic symptoms have since subsided to a miniscule level.  The neuropathic symptoms took a while to dissipate and are taking their own sweet time to heal.  I still have the rare times when the brain fog rolls in, even when I'm not glutened.  When that happens, I try to take things in stride and use the Frankisense I have on hand so I don't go twitching in public. It's a little distracting.

Like the recent post stated.  The numbing/tingling you are feeling could be related to the gluten and could also be something else too.  I would not be to concerned about until after your post-diagnostic follow up.  When you go to that appt., ask the doctor about to see what he/she says and go from there.  The doc might be able to shed some light on the concern.

[SueMD]

thanks both of you - good advice. I don't really feel it's urgent so will wait and ask at the post-diagnosis appt and if I'm still worried will get an appt with the GP. Thank for helping me clarify things in my own mind

[Chicosalt]

I was dx'd idiopathic axonal neuropathy a month ago and I'm NOT a happy camper.  I have just the numbish/tingling so far, no pain, but am 1/3 scared to death, 2/3 determined as heck to beat this.  Had ALL possible tests, but for my well water, and for better or worse, there are absolutely no red flags.  I'm currently taking all kinds of suggested supplements.  (Also have anxiety and osteoporosis.)

Question:  I read that about 1/3 of idiopathic neuropathy is caused by gluten sensitive/ celiac problems.  Yet on here, almost everyone is lessening or resolving nerve problems.  I know, I know... no one can promise me anything, and my hopes are pie in the sky (I have nothing else right now), but in YOUR (this) community, do you find it to really be just 1/3?  Would LOVE to hear it's 90% haha!!!

Got anything for me?  

I've been working on being gluten free as of 2 weeks ago; learning curve is straight up- there is SO much to learn,  but I'm doing pretty dang good so far (not perfect yet!)  The diet, being a part of healthy eating and living, doesn't bother me at all; actually this is easy peasy next to what I'm potentially looking at.

Thanks in advance for whatever support you continue to provide to me and the rest of us tender feet.

[cyclinglady]

1 hour ago, Chicosalt said:

I was dx'd idiopathic axonal neuropathy a month ago and I'm NOT a happy camper.  I have just the numbish/tingling so far, no pain, but am 1/3 scared to death, 2/3 determined as heck to beat this.  Had ALL possible tests, but for my well water, and for better or worse, there are absolutely no red flags.  I'm currently taking all kinds of suggested supplements.  (Also have anxiety and osteoporosis.)

Question:  I read that about 1/3 of idiopathic neuropathy is caused by gluten sensitive/ celiac problems.  Yet on here, almost everyone is lessening or resolving nerve problems.  I know, I know... no one can promise me anything, and my hopes are pie in the sky (I have nothing else right now), but in YOUR (this) community, do you find it to really be just 1/3?  Would LOVE to hear it's 90% haha!!!

Got anything for me?  

I've been working on being gluten free as of 2 weeks ago; learning curve is straight up- there is SO much to learn,  but I'm doing pretty dang good so far (not perfect yet!)  The diet, being a part of healthy eating and living, doesn't bother me at all; actually this is easy peasy next to what I'm potentially looking at.

Thanks in advance for whatever support you continue to provide to me and the rest of us tender feet.

Do you have celiac disease?  If not, I would strongly recommend getting a celiac blood panel to rule it out before going gluten free.  

[Chicosalt]

In all the reading I've done in many of these forums,  it is my understanding that,  though there may be a test for celiac disease,   there is no definitive test for gluten sensitivity.  

Have I misunderstood?  I may or may not have celiac disease,  but with what is at stake,  have no problem going down a healthy,  gluten free (low sugar,  no processed foods,  etc. )  road nevertheless. 

Suggestion to this?  I see doctor on Thursday and will question him further also.  

Still curious about the healing odds for peripheral neuropathy when gluten free.  

Infinite thanks!  

[GFinDC]

Hi Chicosalt,

I can tell you about myself.  I had some nerve issues that resolved and some that didn't.  I had muscle twitching that resolved after a while on the gluten-free diet.  I had sleep issues and anxiety issues that resolved in time also.  I still have trouble swallowing food at times though.  But that's better than it used to be.

I do suggest you stay on gluten and get the full testing for celiac disease.  It's much easier to do testing now before you are gluten-free for very long.  The test results are often invalid if you are not eating gluten.  Knowing is better than guessing IMHO.  Plus celiac disease is related to certain genes.  So some of your close relatives might have it or get it also.  If you are diagnosed, you could warn them about it.

Welcome to the forum chicosalt!

[Ennis-TX]

6 hours ago, Chicosalt said:

In all the reading I've done in many of these forums,  it is my understanding that,  though there may be a test for celiac disease,   there is no definitive test for gluten sensitivity.  

Have I misunderstood?  I may or may not have celiac disease,  but with what is at stake,  have no problem going down a healthy,  gluten free (low sugar,  no processed foods,  etc. )  road nevertheless. 

Suggestion to this?  I see doctor on Thursday and will question him further also.  

Still curious about the healing odds for peripheral neuropathy when gluten free.  

Infinite thanks!  

For me the pains, moods swings, anxiety, and the "Mr Hyde" I used to get have stopped along with a few other things. But the numbness, inability to process anything but the simplest of math problems (no longer able to do division, multiplication even written out), and computer programing (used to and even took college courses on it). Along with a bit of a broken mind seem to not have improved at all. I have noticed when I get glutened certain things come back like the mood swings, a sorta out of it feeling, anxiety, and hands get so bad I can grab a hot pan out of the oven and not notice the burn (mind fog+numbness)

[cyclinglady]

The reality is that about 2/3 of adult celiacs never have complete intestinal healing.  Symptoms can and do resolve for many, but the intestinal  damage can remain.   A more recent study (last month or two) followed children.  Celiac experts had thought that all children healed on a gluten free diet.  Turns out that 20% do not heal.  Why?  Doctors do not know, but for many, they suspect that gluten is still sneaking into their diet.  

Do we give up hope?  No way!  

The diet is NOT "easy peasy".  I cook three meals a day for my family.  We do not go out to eat.  When we are willing to risk it, it's usually because we are on vacation.  We do plenty of prior research and dine at grocery stores.  I always carry snacks with me as there is no popping into a fast food joint for a quick meal.  Why are we so cautious?  Everyone is different.  My hubby may feel ill for a week.  Me?  Once my antibodies start flaring they continue to rise for a few months!  

I am formally diagnosed (three years).  My hubby went gluten free 15 years ago per the poor advice from two medical doctors.  The advice was sound.  We know that gluten makes him sick.  But he'll be the first one to say that I have had way more support from family, friends and medical.  So, it can be important to exclude celiac disease before embarking in a gluten free diet.  Will my hubby do a gluten challenge?  No way.  How can we afford for him to get so sick?  We are self-employed -- there are no sick days!  Besides, my last glutening brought in new challenges (hives, iching rashes, passing out, etc.).  Do we really need another new illness?  Make my current neuropathy worse?  

Again, nerve healing can be tricky.   The best you can do is to avoid further damage.  If lucky, it might resolve! So, you can see that just going gluten free in the chance that your neuropathies will diminish is a crap shoot.  Only you can decide if it is worth it.  

Oh, I assume, you are not diabetic or prediabetic?  

I hope you figure it out.  

[Chicosalt]

Thanks,  Cyclinglady, 

First and foremost,  please don't misunderstand my calling a gluten free lifestyle so easy,  but for in comparison to full blown, crippling neuropathy.   

I have been tested for what seems like EVERYTHING,  but celiac and heavy metals in our well water.  Those are next- thanks for your advice. 

Sad as this may be, and forgive me if this seems insensitive, but I hope I am celiac at this point.  Then i can at least start working toward health.  Idiopathic anything is a brutal diagnosis. 

Off to doc Thursday morning to keep digging.  

Question- is it your understanding that tests for celiac disease and/or gluten sensitivity are accurate? … 

Thanks again to you,  Ennis and GFinDC.   Optimism is magical,  and I embrace every bit I  can find. 

[cyclinglady]

There are no medically accepted tests for a gluten sensitivity (hopefully soon).  Celiac disease must be ruled out first.  Are they accurate?

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i would strongly recommend a full panel.  Why?  I am one of the weird ones.  I test negative to the common TTG.  My endoscopy revealed a Marsh Stage IIIB.  

If the celiac blood test is negative, I would go on the gluten free diet, eliminate dairy too (temporarily), low sugar diet -- anything to help reduce inflammation.  

Here is a reputable article about gluten ataxia:

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[Chicosalt]

Getting tested for gluten (and heavy metals)  tomorrow.   From there it is full blown gluten free,  low sugar,  no processed foods,  dairy free, daily walking up my mountain, some anti oxidents and pro biotics,  and determination above all. 

Thanks again for some direction. 

Will report back in a bunch of months,  hopefully w great news. 

Onward and forward! !