Q: To Those W/pheriphal Neuropathy

[debmidge]

Looking for advice from those who have this condition. Did Dr. connect it to celiac disease? Did it go away?

Do you have it with restless leg syndrome?

[SueC]

This was my first symptom!! I had neuropathy in my left hand and my feet and legs would tingle. I have been gluten-free for 14 weeks and it is not gone but MUCH better. I think only time will tell.

My doctor did not put it with celiac disease. I found a message board on the internet talking about it and insisted I get tested. She was very surprised when my ttg came back 187..... and I had complete atrophy of my villi My ttg is now down to 25 so I hope as it gets lower ALL tingling will go away.

I hope this helps. I know it is very frustrating. I posted this question awhile back. Nerve damage takes a long time to heal and the advice I followed from this board is give the diet a chance to work. have patience and yes it can be caused by celiac disease...

Sue

[egardner]

Ok, since the system has been updated I am a little bit computer retarded, looks like I reposted Sue's post, sorry about that. I just wanted to let you guys know that Periphreal nueropathy is highly associated with diabetes, so keep your blood sugar levels a priority and make sure you get them checked often. I bet you already knew that but just in case.....

[debmidge]

Sue, what is ttg?

egardner: good point about diabetes being a factor. I'd like to know more about to neuropathy that isn't related to diabetes - neuropathy that's related to celiac disease.

My husband has neuropathy that started slightly after he went gluten-free (coincidence I think) but hasn't cleared up in two years since gluten-free. Dr. is unconcerned & is fishing in a different direction (spinal pressure) and we need more info in order to proceed. Husband was tested for diabetes & is negative for that.

Could "normal-ranged" Vitamin B12 levels in blood belie a V B12 Deficiency after all?

[SueC]

Ttg is one one of the antibodies specific for celiac disease. If you have a celiac panel done you need to make sure that your Ttg level is checked. It is an indicator for intestinal damage.

Sue

[stef-the-kicking-cuty]

The nerve damage I had, seems to be different from all the nerve damages on this board. I had a sharp pain down the outside of my right leg sometimes. But mine disappeared with the glutenfree diet completely.

[watkinson]

Hi debmidge,

I have peripheral nueropothy, fibromyalgia, restless leg syndrome, chronic fatigue and sleeplessness. however all of those problems started to clear up drastically after going gluten-free. I then saw an allergist and found out I am allergic to corn. Taking corn out of my diet made things even better. My PN was tingling and numbness in my hands and feet, even my crotch during a stomach attack. shooting pains going down my arms and legs, my left elbow felt like it was chronically broken, and the skin around it felt like it was always rug burned. The PN is basically completely gone, I only have it if I get accidentally glutened (which thankfully is very rare) The fibro, RLS, CF and sleeplessness however, is better but not completely gone. My doctor has started me on a medication called maprotaline (yes, it's gluten-free) I feel better all the time. I figure that it just takes time to heal. I have been gluten-free for about a year and a half. Eventually I will stop taking the Maprotaline to see if I have healed all the way. But for now the med helps.

You also asked if the doctor connected it...My doctor knew nothing about everything. I was the one to find out I had celiacs, and told him I needed the tests.

Wendy

[debmidge]

I was afraid of corn being the answer....he's sensitive to corn as per York Labs..but also sensitive to yeast, egg yolk, soy...there's nothing left for him to eat. I can't tell him not to eat corn - he's too close to doing himself in already. If we take more food choices away from him I am afraid he'll go over the edge. Also, he cannot afford to lose any weight. He's 5' 11" at 133 lbs now.

No corn would mean : no foods with corn oil, no medications with corn as filler. No commercial puddings with corn, nothing with corn starch; no corn bread;

what exactly does the corn do to distrupt the nervous system? It's hard to follow this line of thinking....

[watkinson]

HI debmidge,

Good news for you. I also freaked out when my allergist told me I was allergic to corn! I said "what in the world can I eat? Everything has corn in it!! He explained to me that it's the corn protien that we are allergic to, that corn oil and corn syrup have no protien. It's things like corn flour, corn meal, or actuall corn that I have to stay away from. Whewwwwww!!!!!

Good luck with the diagnosis, Wendy

[debmidge]

Wendy, wish that could be good news. husband lives on cornbread and cream style corn and will be very, very, very upset if he has to stop. He began eating cornbread upon learning of his new celiac disease in 2003. Cream corn is one of only two vegetables he can have. Eliminating this will be disasterous mentally. To make it more difficult, he does not take change well.

[watkinson]

Hi debmidge,

AHHHHH!! I'm so sorry!

Another thought I had when you said he eats corn bread...most corn bread recipies have flour in them along with corn meal...what recipie is he eating. Maybe that's the problem...maybe he's getting glutenend!! And what is the source of the creamed corn? Is it canned? who's the maunfacturer?

It's so awful when we feel like we have no choices. I saw that you asked what does corn do to the nervous system. It's... what does an allergy do, not speiciclly corn. The answer is I'm not sure (sorry) I feel that because I am a celiac and that my systems were so messed up for so many years that my sensitivities to other foods cause weird reactions now. Maybe years ago if I ate corn I would only get a stuffed up nose, I don't know. But because of the physical damage brought on by celiacs, now a food allergy causes inflamation, which in turn causes nerve endings to swell. I don't know maybe someone else has an educated answer or maybe your doctor. I only know that when I eat pecans I feel immediatley depressed and feel like I can't move, and corn makes the PN and Fibro. act up terribly.

Also...why did you say corn is the only vegtable he can have. Does he have other allergies or does he just not like other veg.? There are so many other veggies that are amazingly good. Try some cooked in other ways. Sliced Zuccini on the grill is amazing with butter or olive oil, and garlic. Wd don't eve like zuccini but made this way it is one of our favorite veggies! Try grilling red peppers and asperagus. Yummmm What about cucumbers with dip? If he can have dairy Warm brie spread onto cold cucumbers is amazing!! Brie can be expensive so I buy it at costco. A huge amount for 5 or 6 dollars.

I hope he figures out what it is soon, PN can be very painful

Wendy

[debmidge]

The cornbread is made by me here at home and I use Ener-G corn flour, Ener-G tapocia starch, gluten-free corn meal, egg, milk, gluten-free baking powder, gluten-free xanthan gum, normal salt, normal sugar, sometimes I add gluten-free sorghum from Bob's red mill. that's it. All gluten-free as far as the manufacturers tell me.

He cannot digest other vegetables - for years during his False IBS years he couldn't digest vegetables such as beans, cucumbers, broccoli, fruits, etc. The only vegetable that he could get away with was the cream style corn after straining it a little. Lately, he can get away with overcooked canned green beans, but nothing else.

The corn is a problem because he eats the cornbread for lunch. It's a lunch bread for him. He has to load up on starches because his weight is too, too low and needs to gain some back. So lunch is usually either cornbread with some gluten-free chicken and a can of Del Monte (all the vegetables are DelMonte too , which I understand is gluten-free) diced peaches or Van's gluten-free waffles and pure maple syrup with lots of butter.

His "glutened" symptoms are diarrhea and extreme gas, so I know he's not getting gluten. He eats all meals at home, starting with gluten-free cereal for breakfast. He cannot digest eggs and York Labs told him that he was sensitive to egg yolks too. Dinner is usually fresh meat, potatoes and his newly discovered green beans. Sometimes I'll make brown rice, not often.

I am looking for successful peripheral neuropathy treatment stories. His blood tests say that his Vitamin B 12 levels are ok, but his body is acting like they aren't ok. Is this possible?

[watkinson]

Debmidge,

Gosh...I really am so sorry he feels so sick. This is all so difficult!

I do know a little about how he feels. I had been sick all my life. spent my childhood having every cold and flu that came my way. Strep throat and tonsilitis, missed alot of school. Starting having terrible bone and muscle pain in Jr. high, and stomache problems in high school, skin problems and horrific joint pain right after that. Everything got progressivly worse over a 20 year period until I would beg God to heal me or let me die. I saw every doctor imaginable and was tested for everything but never got any results. It was always "I don't know what's wrong with you"! Made me feel like I was crazy!! As soon as I went gluten-free (figured out that it was celiacs and got tested) it was like a miracle! I felt better almost immediatly!! And have continued to feel better all the time!

For me the peripheral neuropothy seemed to take ages to go away, I guess I figured that since the stomache problems dissapeared completley right away and that the thyroid problems cleared up within a few months on it's own, that the joint and muscle pain would be the same. I did feel better but the PN, the fibro, the restless leg, and the sleeplessness lingured on. I started an excersise program and started running. At first it was excruciatingly painful. But in time I felt better and better. I then started lifting weights to see if my elbows would get better. Sure enough that seemed (in time) to be the clincher. It's about 99% gone now.

I also gave up caffiene. Caffiene can be an inflamatory. I don't know if it helped or not because I did that at the same time as the excersise, but I think so.

Also...you asked about B vitamins and could tests be off. I believe that tests can absolutley be off. For years my blood tests showed that my thyroid levels were (although low) "in the normal range". After going gluten-free my levels came up for the first time in 20 years. Then they realized that I had an untreated thyroid condition. Now I have to have it rechecked avery so oftern I don't know why considering they didn't get it in the first place. I would definatley go on liquid vitamins or sub lingual (under the tongue) B vitamins. I would also take omega 3 fatty acids. They help every system in the body, heart, brain, skin, and in our case, joints, and the nervous system.

I'm gald he learned about green beans. That's great! What about other canned veggies.?

I wish I had the magic answer for the PN but I don't. When I was diagnosed I googled it and found out everything I could. Maybe there is new info. When I went on the Maprotaline for the fibro and sleeplessness, I think that was the thing that made the final difference in how I felt, I mean, just being able to get some sleep has made a difference in how I feel.

Good luck, sorry this is so long, Wendy

[cdford]

It took a long time for mine to begin to get better. When it did, it really did. I was at the point of being wheelchair bound and often bedbound. It just took more than two years gluten-free for the nerves to heal up enough to begin to see much change. I am now walking with a walker again (and typing on this computer again...two handed most days). I still have a lot of trouble with it if I get glutened even slightly or if I let myself get overly tired. It is one of the first things to return, right after the fatigue. There is light at the end of this tunnel. He will probably also be able to eat more with time. It took a while after my last glutening for me to be able to handle even mashed potatoes without a dose of IV demerol as a chaser. Now I could eat most anything if I wanted to.

[watkinson]

Hi Debmidge,

I came across this medical article the other day about PN. This was one of the facts stated that I thought you would find interesting.

"Vitamin E, B6, B12, niacin are essential to healthy nerve function. Thiamine deficience, in particular, can cause a painfrul neuropothy of the extremities."

I wonder if the doctor could check your hubands levels.

Wouldn't it be wonderful if that was the cause, and just taking a vitamin could cure it for him? Our bodies really are an amazing thing. It works so well when everything is in sync, but can be so terrible when just a little thing is off.

Amazing!

I hope this helps, Wendy