Peripheral Neuropathy

[faegan]

Hey.

Just wondering if anyone's was WORSENED by the gluten-free diet. Mine has gotten progressively worse since I got on the diet in early April. I'm at a loss, and so seem to be my doctors.

Thanks.

[Rikki Tikki]

Hi Faegan:

What I would do is have the doctor run another celiac panel to see if you are somehow ingesting gluten somewhere. Have you made sure any medications you are taking are gluten free? This would be a cause of concern to me.

I hope you get better soon!

[eKatherine]

I have heard of peripheral neuropathy that did not start until after the person went gluten-free. Research shows that neurological symptoms may or may not improve, but if not, eventually they will stabilize.

[ravenwoodglass]

Hey.

Just wondering if anyone's was WORSENED by the gluten-free diet. Mine has gotten progressively worse since I got on the diet in early April. I'm at a loss, and so seem to be my doctors.

Thanks.

Make sure they check your blood sugar levels. Mine started to come back and I was also more fatigued and getting up at night to pee more than normal. At a regular check up they checked my sugar and found I was diabetic. I consider myself fortunate that after I got my sugar under control they went away again.

[Ruth52]

Sorry if this question sounds basic but what is peripheral neuropathy.

[ravenwoodglass]

Sorry if this question sounds basic but what is peripheral neuropathy.

It is when there is a disruption in the nerves that causes a pins and needles sensation most commonly in the hands and feet. This will sometimes be seen in other parts of the body and can also cause a burning sensation that is difficult to relieve and in some a numbness occurs.

[debmidge]

My husband is a case of per. neuropathy after going 100% gluten-free. My theory is that it was gaining on him prior to his being correctly diagnosed in 2003 and he would have gotten in anyway....this being said so far he still has it, he's still 100% gluten-free and there's no other reasons for it : Glucose levels are normal, thyroid normal.

There might be a connection to his restless leg syndrome, by the way. But again, that's neurological too.

We just hope it doesn't get any worse.

[nikki-uk]

My husband is a case of per. neuropathy after going 100% gluten-free. My theory is that it was gaining on him prior to his being correctly diagnosed in 2003 and he would have gotten in anyway....this being said so far he still has it, he's still 100% gluten-free and there's no other reasons for it : Glucose levels are normal, thyroid normal.

(Again!)My husbands was very similar.(Deb,I think our hubby's are very similar!!)

I think the PN was creeping up on him just before his dx of celiac disease,but it became really noticable after him going G.F.

Burning soles of the feet,numbness and tingling of lower legs,a staggering gait(gluten ataxia?)

After my husband had a repeat small bowel biopsy after 6 months strict G.F (because of no relief of symptoms)it showed his villi hadn't shown any improvement.The G.I decided to put him on a course of steroids which seemed to be the turning point.

His 'neurological' symptoms of celiac disease slowly subsided.

During this time my husband was also seeing a neurologist and had many tests (including an EMG which came back normal).

The neurologist put his symptoms down to vitamin deficiencies.

Perhaps the steroids reduced the inflammation in his bowel enough for him to absorb adequate vitamins?

That being said,I think hubby has restless leg syndrome.

The jerking and kicking at night drives me mad!!

Hope you get to the bottom of your problems

[jcc]

There are many causes of PN, including Celiac Disease. PN that is directly related to Celiac Disease may be caused by either direct immunological factors OR nutritional deficiency. In terms of nutritional deficiency, the major concerns are deficiencies in vitamins B1, B6, B12 or E, so it is a good idea to address these areas with your doctor.

Also, as a note, healing of the nerves can cause even more intense symptoms than the degenerating of the nerves some times. This might explain a possibility for temporary worsening, but wouldn't explain an onset that came completely after the diagnosis, or worsening that wasn't temporary.

Here is some info about Celiac Disease andOpen Original Shared Link, and PN in general.

THere is a great article in the above titled An Algorithm for the Evaluation of Peripheral Neuropathy that covers a wide variety of possibilities. Be sure to review any prescription drugs, as some are associated with developing PN.

Cara

P.S. Some believe that casein sensitivity may also contribute to PN in a similar way, but I'm not aware of any studies in this area. It might be worth considering, though. For example, some people with "MS" have shown a reversal of their symptoms using a gluten free/casein free/legume free diet. Open Original Shared Link

[jesscarmel]

It is when there is a disruption in the nerves that causes a pins and needles sensation most commonly in the hands and feet. This will sometimes be seen in other parts of the body and can also cause a burning sensation that is difficult to relieve and in some a numbness occurs.

oh my goodness. i think i have this but didnt know the name of it. since ive been gluten-free ive had tingling in my left hand pinky and finger beside it. also when i wake up in the moring my feet are tingly. i asked my dr about it yesterday, he checked my circulatoin and said it was normal. he said since my ttg was back to normal i couldnt be from celiac.

also the worst part is, when i got pancreatitis in january due to undiagnosed celiac, i began having a burning sensation like someone had just droped a drop of hot water on me. i still have this in different spots on my body. ive asked a neuro about it and my dr and my gastro and they all said theyve never heard of it before??? do you think this could neuropathy???

thanks

Jess

[jcc]

do you think this could neuropathy???

thanks

Jess

Yes, its possible. I don't know why our doctors sometimes act like they've never heard of it. When I described my symptoms of numbness, burning, tingling, buzzing and twitching, my doctor looked at me like I was the first to ever complain of such things.

I'd want to rule out any nutritional deficiency that may need to be addressed. Many doctors just don't know enough about symptoms of nutritional deficiency or how to test for them. While in theory, nutritional deficiency should eventually self correct once the celiac disease treated, it may not or may not quickly enough. In terms of B12 deficiency it may be a result of co-existing pernicous anema, yet another autoimmune disease where you lack the intrinsic factor needed to absorb B12. You can be B12 deficient with low normal B12 levels and without anemia, so it often goes missed. There is also a link about B12 deficiency in The Gluten File linked below my name, and it is a pretty common cause for early neuropathy symptoms.

Cara

[jesscarmel]

Yes, its possible. I don't know why our doctors sometimes act like they've never heard of it. When I described my symptoms of numbness, burning, tingling, buzzing and twitching, my doctor looked at me like I was the first to ever complain of such things.

I'd want to rule out any nutritional deficiency that may need to be addressed. Many doctors just don't know enough about symptoms of nutritional deficiency or how to test for them. While in theory, nutritional deficiency should eventually self correct once the celiac disease treated, it may not or may not quickly enough. In terms of B12 deficiency it may be a result of co-existing pernicous anema, yet another autoimmune disease where you lack the intrinsic factor needed to absorb B12. You can be B12 deficient with low normal B12 levels and without anemia, so it often goes missed. There is also a link about B12 deficiency in The Gluten File linked below my name, and it is a pretty common cause for early neuropathy symptoms.

Cara

i have iron deficient anemeia is that the same thing?

[darlindeb25]

No--iron deficient anemia is not the same.

Pernicious anemia is caused by a lack of intrinsic factor, a substance needed to absorb vitamin B12 from the gastrointestinal tract. Vitamin B12, in turn, is necessary for the formation of red blood cells. Anemia is a condition where red blood cells are not providing adequate oxygen to body tissues. There are many types and causes of anemia It is a B12 deficiency anemia.

Periphreal neuropathy has so many more sypmtoms other than tingling. Numbness, burning, bee sting type pain, swelling, carpal tunnel is a neuropathy--so many things. There are days when I have a spot on one leg that feels like a fan is blowing on it, but to the touch, it feels fine. There are days when my feet will hurt so bad I can hardly stand it and then the pain is gone. I have dizziness with mine, times when I look up and just tip.

My neuropathy began before I went gluten free--I have had carpal tunnel sypmtoms for over 8 yrs, been gluten-free for 5. My neuropathy didnt get worse for a long time after going gluten free--I have noticed a progression in the last year. I take 2400mcg of B12 daily and stay within the normal range for B12, which really isn't god enough for someone with neuropathy.

[All-about-March]

Now that I am back to work, I notice more of the neuro symptoms. It almost seems like too much physical activity will cause my tingly/numb/weak sensations, but at the same time, too much 'rest' in between shifs brings it on as well. Is this strange?

I don't know if these are all attributed to celiacs or not, but I have noticed some improvement on my B12. The best I ever felt was when I was getting accupuncture for poor leg circulation and phlebitis. Had to stop that b/c of the cost though.

Not sure who wrote that they were taking 2400mcg B12.....what is considered enough for B12 and what is too much? Can you take too much of it? I am taking 1200mcg and my levels are still be all over the place. I also don't want to be wasting money by taking more than what my body may absorb.

[marciab]

My nueropathy in my arms and hands got worse for awhile after going gluten free. I had a fluttering feeling in my arms and hands for a couple of months that was very annoying, but it is gone now. Thankfully, it was driving me buggy.

I was thinking that the reason your nueropathy increased could be that you are allergic or sensitive to something else in your diet and it is just now showing up since you are now absorbing it or your body was just in dire need of nutrients.

Also, any kind of injury you have had over you lifetime can cause problems later on in life. My neck and shoulders are very quick to go into spasm because I have had at least 5 significant injuries to my neck. This pinches off the nerves in my arms and hands.

Excercising makes me feel better. Marcia