Peripheral Neuropathy and Celiac Cause Diagnosis
 

Hi,
I've been dealing with peripheral neuropathy symptoms for nearly 3 years. It started as loss of sensation in the top of my right foot. This would come and go for periods of days to several weeks. I've had similar feelings in my left foot but much more intermittent. Recently my fingers have been experiencing numbness, burning, and extreme pain. The right side of my face and my tongue are also sometimes numb. My toes and feet have now also been giving me the same numb, burning and painful feelings.

This has been misdiagnosed as back issues. As the feelings got worse in my hands and face however I've had a spine specialist and neurologist now recently rule out my spine as the source.

I am a suspected celiac and have been on a gluten free diet for more than ten years. I have also been mostly dairy free for the past two years. My celiac disease was not properly diagnosed with a biopsy. I get too sick eating gluten to attempt a "gluten challenge" and get a true diagnosis.

My doctors have basically given up and are calling it an idiopathic neuropathy. I have not pushed the celiac connection with them to this point. They seem reluctant to believe that I am a celiac without a positive blood test.

Is there any reason to pursue a more refined diagnosis? I thought I read somewhere that immune system related neuropathy could be treated with immune suppression drugs. Is that correct and would it apply to celiac related neuropathy? I also experience extremely tight muscles in my feet, legs, hips, and back. Could that by connected to my PN?

Any help or thoughts would be appreciated.

Welcome fingertingler. :Wave-Hello:

Someone will be along to help.

Can't you get tested for Celiac? It's s a simple blood test. All my test came back negative for gluten, but I am staying on the gluten free diet for anti inflamation. Yes, the tight muscles can be related to PN. The doctors give up pretty easily on there Dx, as they don't have many options in there doctor bag. I could see why the doctor though of a pinched nerve in the back, as it was only one foot at first... I had a doctor refer me to a Podiatrist even though I had equal problems with my hands! Have you gotten a nerve conduction study? How about a punch biopsy for small fiber neuropathy? Mine has spread to my whole body, but my tongue has not been effected, luckily. Do have tight muscles in my feet and legs, especially the calf muscles.
Maybe you need to find a better doctor? Is he a neurologist?
Hope that helps some...

There's certainly a lot of evidence--
 

--that celiac/gluten sensitivity can have neurologic manifestations, including peripheral neuropathy (most often a small fiber neuropathy that often is not confined to the distal extremities but may occur on the trunk of the body and face as well).

There are also problems with gold standard celiac diagnosis--many gastro doctors not familiar with the endoscopy sampling protocols often do not take enough samples, or limit their sampling to the duodenum, and may miss more patchy villious atrophy.

Typically, though, celiac neuropathy is not treated with immune suppresant drugs, as the autoimmune response here is directed at the gliadin antigen which cross reacts with epitopes in the villi and other bodily tissues. The standard approach is simply not to introduce that antigen into the system after a diagnosis--e.g., abstain from gluten.

You likely should have been offered a serum celiac panel earlier; now, though, if you've been off gluten for a while, the test results may not be accurate.

When going gluten free doesn't seem to
Work well... Try eliminating Nightshade
Veggies. I have much more PN from them
Than gluten.

Often the PN pain from Nightshades can be
delayed by a day or two which complicates
Making the connection.

A lot of the gluten free foods contain potato starch, and these foods affect my pn as much as the gluten does.

Thanks for the replies everyone.

Sparky, I've been on a gluten free diet for more than 10 years so the blood tests are not likely to get me an accurate diagnosis. Same goes for the si biopsy from what I've heard. I have been thinking about getting the gene testing done to give some clue. Yeah my calf muscles are extremely tight. I haven't had the punch biopsy done yet. The nerve conduction study came back negative but things have gotten much worse since I had that done.

I have been eating plenty of night shades so I will try cutting them out for a bit to see if that helps. I would be ecstatic to find a food that is making things worse. No hot sauce makes me almost as sad as no beer :(

Glenn, do you have any idea if my PN is not responding the the GF diet does that rule it out as the cause? I.E. could I have just gotten lucky with two different unrelated immune system issues? If my doctor prescribed a round of prednisone could that be diagnostic in terms of my type of PN if there is or is not a response?

I've had MRIs of head, neck, lower back. - Negative
Nerve conduction study.- Negative
Probably 30 blood tests. Vitamin D deficient, low on Vit B1. Both have been brought back to normal more than a year ago.

Avoiding nightshades...now that's a challenge. :(

Unfortunately--
 

--a lot of the people who are celiac or gluten sensitive anecdotally report that going gluten free doesn't always improve their neuropathy symptoms.

Some report improvement, but many don't. In the latter cases, it's often unclear whether there is something else contributing to the neuropathy, such as nutrient deficiencies that remain unaddressed, or whether there is simply too much damage by then.

Still, it makes sense to ban gluten from the diet merely to stop the autoimmune assault on the villi, if nothing else. Those do seem to recover in time, though often it's a long process.

I firmly believe that any part of our body, including the nerves, can heal when the toxins are removed and they are given the proper building blocks. If you are not healing then these conditions are not met.

What strikes me here is--why do you believe you are celiac? Because you have a bad reaction when you eat gluten? Maybe your doctors are right and this is not a good enough reason. You are certain your blood sugar is ok? Have you had a glucose tolerance test?

It's good your are off dairy. And we are quite possibly better off without gluten anyway, although some prominent doctors in healing don't believe this is a problem.
Ron