Peripheral Neuropathy

[gwynanne4life]

I am so afraid. I have had tingling and neuropathy in my lower legs since being diagnosed last Fall with Celiac Disease.  Now I have a new symptom or symptoms.  The bottom of my right foot feels warm and I have these shooting stabbing pain in my toes.  And (this is weird) but I have this sense of warmth also in my stomach and chest. In addition, I've noticed that my right foot looks as changed, and has bunions. It looks like the foot of a bedridden 90 year old woman.  I am terrified. I don't know what Doctor I should see first. I was going to see a podiatrist but now I guess I should call my Primary Care Physician and see him.  Am I going to die from this?  I have observed a strict gluten free diet since my diagnose.

[GF Lover]

I started a new topic for Gwynanne.  I lost a couple replies in the process.  Here they are.

 

 

From CYCLINGLADY

Have you had your blood glucose checked for diabetes? Blood sugar spikes over 140 after meals can start diabetic complications like neuropathy. Also, have you had a complete thyroid panel? I would go to your GP for these tests. If you have been strictly adhering to the gluten-free diet, you should be seeing improvements. There may be something else going on. You get one autoimmune disorder and more are bound to show up (that is my theory).

Hang in there!

P.S. Bunions are usually genetic. Surgery can help.

Oh, not sure of your diet, but if you consume too much protein, you can get gout -- like Henry the VIII.

 

 

From FRIEZE

Gwenanne, have you been "worked up" for Charcot foot? 

[gwynanne4life]

My glucose level is fine - I am not diabetic.  I haven't had any foot work up yet - but looks like now I'll need to.  My thyroid panel always seems to come back normal - although my base temperature in the morning is below 96.  I will have my PC run another Thyroid panel again. Thanks for the advise, and thank you moderator for putting this topic in a new thread.  :-)

[cyclinglady]

Fasting blood glucose can be the last thing to show a positive for diabetes. Blood sugar spikes over 140 after meals cause damage. A hemoglobin A1C test will show an average over three months or ask for glucose tolerance test to see if you are getting a spike. My SIL whose mother died of diabetic complications, kept asking for additional tests beyond the fasting. Yep, to the doctor's surprise, she was diabetic.

[GF Lover]

Hi Gwynanne,

 

Have you made your Doctor Appointment Yet?  I would go to the Podiatrist directly if you don't need a referral.  The tingling, you've had since diagnosis may need more time to heal being gluten free, But I would definetly get your foot checked out.  The tingling may or may not be connected.  Does your family have a history of foot problems?  Lots of questions the Doc will want to know.

 

Update us if you want,

 

Colleen

[mommida]

You may be lacking in vitamin B 12.  It is a "safe" supplement, as there is no evidence of a toxic level.  (Your body will just "flush" out any extra amounts)  You can have your levels checked by a blood test.  (make sure you get a copy of the tests to show the range)

 

Stay clam.  Go to the doctor.  Get your vitamin and mineral levels checked.  Deficiencies can cause numerous symptoms.  (ie anemia/iron deficiency can cause paleness of skin, feeling cold, headaches, and fainting)  Iron does have a toxic level and supplementing should be done with medical guidance.  As a newly diagnosed Celiac it is very likely that you do have some nutrient deficiencies.

[cristiana]

Hi gwynanne4life

 

You sound like my twin in a couple of ways!

 

Firstly,  I had that neuropathy (lower legs and feet) at the time I was diagnosed and thankfully after many months sublingual B12 supplements it seems to be all but gone now - a year on.  I was so worried about it but by some miracle I met a newly diagnosed English Celiac like me whilst abroad last May when it was really playing up and she went on to list the tingling and numbness she was suffering from (not just her feet but her tongue and arm) and I stopped worrying and started enjoying the holiday!  The tingling was far worse in my left foot, but I have since concluded that that extra damage was to do with badly fitting footwear.  If I wear those boots it tends to come back for a while. I got burning in my feet too, that is a sign of B12 deficiency I gather.  It seems a lot better now although it seems to have been replaced by other foot ailments including worsening bunions – oh the joys of mid-life.  So I think gluten-free Lover is right about healing – it can take time.  Maybe if you are on your feet a lot it takes longer to heal - just a thought?  It will be interesting to find out what a podiatrist makes of it.

 

Also, I have a very low temperature at times, like yours.  At one point I was on the verge of getting hypothermia this winter!  It worried me a lot – I had thyroid blood tests but they came back OK.   I noticed at Christmas that it got a lot better and I think although I am not sure this coincided with increasing the amount of calories I was eating.  I had not been eating certain things thinking they were causing ataxia but it turned out I didn’t have ataxia, just cervical dizziness due to a dodgy neck.  When I relaxed my diet (although of course I am still gluten free) I noticed I felt a lot warmer.   I don’t know if this is anyone else’s experience but if you pass the thyroid and sugar tests which I did it might be worth looking at.

 

I hope you find the answers you need regarding your other issues.

[CMCM]

I am also dealing with the neuropathy....feet and toes mainly, but also some numbness going down my right leg.  All my blood panels, glucose etc. come back normal.  I realized this had started in a much milder way back before I was diagnosed, in early 2006.  Perhaps 8 to 10 years prior I'd had little symptoms, but didn't know it was neuropathy.  After diagnosis, I was not very good about compliance, unfortunately, and I'd be gluten-free for long periods, then I'd indulge.  Although I was mostly gluten-free for the last year, I've been 100% gluten-free for 6 months now, and aware of an increasingly serious issue with the PN.  My doctor called it "idiopathic PN", but of course, she knew zip about the gluten-PN connection.  However, after research she recommended a prescription level vitamin combo that includes bioavailable vitamins that can supposedly help repair the damaged nerves.  The 3 main vitamins are folate (in the form of Metafolin), Pyridoxal 5' phosphate (B6), and Methylcobalamin (B12).  I researched this stuff and learned that these are the more expensive, bioavailable forms that do not need converting by the body....and that I might be one of the people due to celiac whose body cannot convert the regular vitamins in their usual B6, B12 and folic acid forms into a useable form for my body, hence a deficiency that COULD account for the nerve issues I'm experiencing, much like diabetic PN.  

 

Anyhow, this vitamin is prescription only, no idea why that is, and it seemed expensive (this mail order pharmacy was the cheapest I could find...costs me about $58/month).  I first searched out all the components to buy them separately at health food stores, and the price ended up virtually the same as the prescription give or take $5 or less.  But with the separate vitamins, to get the proper amounts I was taking a LOT of pills, which I hated, and the prescription was only one small pill taken twice a day.  So I gave in and tried the prescription (never covered by insurance, by the way) and I've been taking it since Feb. 5.  I was told it could be 8 to 12 weeks before ANY improvement is noticed because what is happening is the vitamins are aiding the slow process of helping the nerves regenerate properly.  Right now I'm at the 11 week point, and I'd say things seem ever so slightly better.  I've decided to give it another 3 months and evaluate more then at the 6 month mark, although I realize it could take longer.  If I see more improvement, I'll keep going.  The prescription version is called Metanx, and it is dispensed thru a particular pharmacy that your doctor can prescribe to (mail order).  They do offer a money-back guarantee, for what that's worth.  For me, the jury is still out on whether it works or not and I can't say for sure it's helping or not at this point 3 months in, but I'm willing to give it a long enough try to see what happens.  I'll post back if good things happen over time.  I think I'm going to take this stuff for at least 9 months and then re-evaluate.  Nerve regeneration/repair is apparently not a quick process. I really hope the vitamin mix helps because I really hate how my feet and toes feel.  

 

I'll add that I've finally come to terms with compliance with a gluten-free life, but it sure took long enough.  I've been a really dummy about it, but I'm finally gluten-free for life now and doing fine with it.  No more denial.

[mommida]

Were you specifically tested for Hashimoto's Thyroiditis?  That is a little harder to get diagnosed.

Always get the lab results for any of your tests.  i.e. vitamin B12 test result reads "in the normal range", but when you look closer ~342 out of a range that is 300- 1500. well that seems pretty low.  One doctor actually gave me a shot of B12 with the test result and highly warned about PN and Celiac connection.