Neurological Symptoms?

[glutenglutton]

Beginning in 2005, I have endured unexplained and undiagnosed neurological symptoms. I've taken just about every test doctors can think of and there doesn't seem to be any answers for me.

Among the tests were anti-gliadin IgG and IgA tests, which I understand are the hallmark tests for Celiac disease. Both came back negative or within normal levels.

I'm wondering how common neurological involvement is in Celiac disease?

The symptoms I have are intermittent. They are typically extremely uncomfortable and painful including the following:

1. Stinging pain in the joints, knees, elbows, wrists, etc.

2. Stinging pain in the eyes

3. Burning tongue

4. Stinging pain the private areas

5. Stinging pain and pins/needles in the feet and hands

6. Tinnitus

7. Stomach pain.

8. Neck pain

9. Muscle twitching in limbs

Sometimes my fingers get so affected that I lose sensation in them --it feels like I'm wearing a light pair of latex gloves.

Considering the above negative tests I've had, I'm not sure this is Celiac disease, but I'll try anything to get this to stop. Question is, I wonder how long it would take for me to see results if I were to simply try a gluten-free diet. Would it be weeks? Months?

Thanks and I appreciate any insight.

[2kids4me]

Have they checked you for B 12 deficiency?

The stinging pain you describe in your hands and feet is called peripheral neuropathy and can be caused by a number of disorders, not just celiac. If you have dry mouth, they should check you for Sjogrens..

Thsi site is excellent and reviews symptoms of various neuropathies and the causes:

Open Original Shared Link

I would pursue it....There are more than 100 types of peripheral neuropathy, each with its own set of symptoms, and causes.

Sandy

[glutenglutton]

Have they checked you for B 12 deficiency?

The stinging pain you describe in your hands and feet is called peripheral neuropathy and can be caused by a number of disorders, not just celiac. If you have dry mouth, they should check you for Sjogrens..

Hi Sandy:

They've checked me and found no evidence of the following:

1. Vitamin B12 deficiency

2. Lyme Disease

3. Heavy Metal poisoning

4. Multiple Sclerosis

5. Lupus

6. Sjogren's Syndrome

7. Hypothyroidism

8. Diabetes

9. AIDS

10. Rheumatoid Arthritis

And others...

It's been more than two years and I've pretty much given up on doctors. Some have even suggested it's "all in my head." Very frustrating and discouraging, to say the least.

[2kids4me]

Have they also investigated primary autoimmune neuropathy? All the diseases you mentioned would result in neuropathy as symptom of the primary disease. There are a number of autoimmune peripheral neuropathies where they are the primary disease.

See: Open Original Shared Link

Have they done EMG's or nerve conduction studies to determine if it is a demyelinating neuropathy?

Sandy

[nora-n]

All my tests were negative, but i do have nevrological symptoms from gluten, or from being glutened.

You do not have to show positive blood results. The antibodies are probably more local.

But I had this DH -like rash since 03, which burnt and went away after trying gluten-free and came back on a gluten challenge. Noone wants to look into that...and my symptoms are quite distinct. I had a negative biopsy of the small intestine, but too few samples were taken, and I had only been back on gluten 5 weeks.

Your symptoms could be from gluten.

Have you looked for Dr. Hadjivassiliou's papers online?

[ravenwoodglass]

Beginning in 2005, I have endured unexplained and undiagnosed neurological symptoms. I've taken just about every test doctors can think of and there doesn't seem to be any answers for me.

Among the tests were anti-gliadin IgG and IgA tests, which I understand are the hallmark tests for Celiac disease. Both came back negative or within normal levels.

I'm wondering how common neurological involvement is in Celiac disease?

The symptoms I have are intermittent. They are typically extremely uncomfortable and painful including the following:

1. Stinging pain in the joints, knees, elbows, wrists, etc.

2. Stinging pain in the eyes

3. Burning tongue

4. Stinging pain the private areas

5. Stinging pain and pins/needles in the feet and hands

6. Tinnitus

7. Stomach pain.

8. Neck pain

9. Muscle twitching in limbs

Sometimes my fingers get so affected that I lose sensation in them --it feels like I'm wearing a light pair of latex gloves.

Considering the above negative tests I've had, I'm not sure this is Celiac disease, but I'll try anything to get this to stop. Question is, I wonder how long it would take for me to see results if I were to simply try a gluten-free diet. Would it be weeks? Months?

Thanks and I appreciate any insight.

I had neuro symptoms since childhood and did not develop significant GI problems until almost 25 years later. I do not show up on blood work at all. This delayed my diagnosis long enough for some problems to not be resolveable.

The suggestion for the sublingual B12 is a good one. It gave me some symptom relief even before I went gluten-free.

After the gluten-free diet some of my neuro problems went away fairly quickly after I realized gluten was in more than just food. Now by fairly quickly I don't mean overnight, the most profound recovery was after about 6 months. After about a year gluten-free I had regained full use of my right leg and had reflexes again.

Have they done an MRI? Those of us with neuro presentations often have something they call in the US 'UBOs' or unidentified bright objects. These are similar but not in the right place to be MS lesions. US docs in their stupidity think these are just an quirk and not of any concern. It wasn't until almost 5 years after mine was done that I found research from other countries that consider these diagnositic of celiac.

If I were you I would try the diet strickly, food and non-food items, for at least 6 months before you determine that this is not the problem. Being Gluten Free will not effect the outcome of any testing they may want to do, or need to do, other than the test for celiac itself. I would try it along with the sublingual B12. And on the B12 thing, if you can get ahold of your actual test results from as far back as you can. Then look at those B12 levels yourself. When I did that with mine, better late than never I discovered that although the doctors considered them in a normal range the levels had dropped steadily for years from over 500 to about 210. 210 was just a tiny bit over 'normal' but the doctors still were not addressing it. After all it was all in my head.

[mn farm gal]

I was all negitive also, but lots of problems and nothing to link it to. I did the diet even after the doctor said "I would never diagnoise anyone with Celiac because I don't think anyone could stick to that diet." I was numb from the waist down and some problems with arms but not like in the legs. Went gluten free and ta-da All feeling are back to about normal after about 8 months. Good luck.

[ravenwoodglass]

I was all negitive also, but lots of problems and nothing to link it to. I did the diet even after the doctor said "I would never diagnoise anyone with Celiac because I don't think anyone could stick to that diet." I was numb from the waist down and some problems with arms but not like in the legs. Went gluten free and ta-da All feeling are back to about normal after about 8 months. Good luck.

Isn't the stupidity of doctors amazing. Sometimes I think they think we are all subhuman beings who are incapable of doing anything that requires a bit of a change. Or they just don't want to lose our money.

I was told the same thing when I was diagnosed with diabetes about a year ago. I was handed a script and told I could pretty much eat the way I was just take the med and monitor my sugar. I threw the script away and changed my diet, even harder than gluten-free but doable and have not had a morning reading over 95 now in 6 months.

It's a shame that so many doctors rely on the drug companies to treat their patients rather than taking some time to educate them instead.

[glutenglutton]

Have they also investigated primary autoimmune neuropathy? All the diseases you mentioned would result in neuropathy as symptom of the primary disease. There are a number of autoimmune peripheral neuropathies where they are the primary disease.

See: Open Original Shared Link

Have they done EMG's or nerve conduction studies to determine if it is a demyelinating neuropathy?

Sandy

Among the many specialists I've seen were rheumatologists who'd done their own set of tests. Nothing unusual. Nothing that would point to an autoimmune disorder.

On the demyelinating side of the spectrum, I received no less than seven MRI's detailing ever inch of my spine and brain. I've also endured several EMG's, EKG's, urine tests, blood tests, spinal fluid tests, etc. All normal.

[Jridge]

Beginning in 2005, I have endured unexplained and undiagnosed neurological symptoms. I've taken just about every test doctors can think of and there doesn't seem to be any answers for me.

Among the tests were anti-gliadin IgG and IgA tests, which I understand are the hallmark tests for Celiac disease. Both came back negative or within normal levels.

I'm wondering how common neurological involvement is in Celiac disease?

The symptoms I have are intermittent. They are typically extremely uncomfortable and painful including the following:

1. Stinging pain in the joints, knees, elbows, wrists, etc.

2. Stinging pain in the eyes

3. Burning tongue

4. Stinging pain the private areas

5. Stinging pain and pins/needles in the feet and hands

6. Tinnitus

7. Stomach pain.

8. Neck pain

9. Muscle twitching in limbs

Sometimes my fingers get so affected that I lose sensation in them --it feels like I'm wearing a light pair of latex gloves.

Considering the above negative tests I've had, I'm not sure this is Celiac disease, but I'll try anything to get this to stop. Question is, I wonder how long it would take for me to see results if I were to simply try a gluten-free diet. Would it be weeks? Months?

Thanks and I appreciate any insight.

[Jridge]

This is my first attempt to post..hope it works

Hello, I was reading your symptoms and they caught my attention! I was diagnosed 3 years ago and noticed some great changes after eliminating gluten. I noticed a difference after several weeks. One of my main symptoms was brain fog..it was so bad at work. I felt like I needed to carry a notepad around with me constantly because I would be so confused on the directions my boss would give me by the time I got back to my desk. Your post mentioned burning tongue and numbness of hands. I had the nerve conduction tests, but I was diagnosed with carpal tunnel in both hands.The doctors thought it could be neuropathy. I also have a rare metabolic disease which is Acute Intermittent Porphyria which also causes severe abdomen & back pain (complicated 3 mos in hospital years ago before being diagnosed). I'm supposed to be on a high protein/high carb diet. I was eating about 5 pieces of whole wheat bread a day which was causing havoc with the Celiac. Approximately 10 years ago I started having numbness around my mouth and numbness/burning tongue..none of the doctors other than the neurologist had an answer. He says the numbness is from the Porphyria. Who knows I think doctors are guessing when there is no clear cut explanation. My stomach is hurting so bad today and I usually don't have many stomach problems..have no idea what is going on...feels like the symptoms I had before having my appendix removed many years ago. I'm very strict on my diet! I also suffer from tinnitis and ache all over which is probably some type of arthritis etc. I was a true tomboy with many broken bones, etc. growing up. I hope you start feeling better soon and get some answers to your questions. Keep us posted on what you learn. Take care. This is the greatest website!

[crosstalk]

Thank you for posting your symptoms and tests. I have a long story, but have not had as much testing as you. The doctors have been very dissmissive of my symptoms, and everything has come back negative. I had a biopsy done four months out which came back negative. So maybe I healed quickly or there was nothing there. But I do know that I was malabsorbing before I got sick one day and realized it was the food I was eating.

Except one test, and that would be the enterolab test. This test was most useful because it showed highly elevated levels of IgA for both gluten and caesin, the protein from milk. It also showed that I did not have the primary Celiac genes, but it did show a minor one (the one they say causes neurological symptoms). But the question is if the expression of this gene is the cause of the problems or the symptom of something else.

Through an elimination diet, I have also discovered that I also have other food allergies (IgG) which were most likely caused by the gluten intolerance. Because of a strong reaction to a small amount of candy made out of corn (stool changing color, fever, flue like symptoms) I suspect that I am corn intolerant as well.

My neuroligical symptoms are slowy disappearing after being grain free (and avoiding the IgG allergies). I still have a huge amount of muscle twitching in my lower leggs, but the constant twitching in the eyes has almost gone away. I'm hopeful.

Clearly there is something here, and I do not think it is Celiacs disease, though I have much in common with them. I am unsure if there is a name for it. But it is a definite medical condition that has caused me much problems.

If you can and you haven't been off gluten too long, I reccommend taking the enterolab test. It would be great if you could post your results here.

I am feeling much better on a gluten/grain free diet. It is difficult as I am eating out of a very small slice of the supermarket right now.

I would like to know what is at work here. Clearly digestion plays a huge role, but I am unable at this time able to discern the mechanism. Whether bad digestion is the cause or the symptom of something else.

I don't see myself going back to gluten. I'm still debating in my mind about milk and corn syrup/corn products (aka all candy made). Knowing what I know now, I consider many foods in the supermarket outright dangerous.

[darlindeb25]

I too, have celiac disease. My PN symptoms began before going gluten free. My PN progression greatly slowed after going gluten-free. My symptoms did not go away and now, after 7 yrs gluten-free, my PN is progressing slowly. I too, take B12 daily, 2400mcg daily. In Oct of 05 my B12 level was 1277, yet I was taking 1200mcg daily of B12 then and I was not told you should stop taking the B12 several days before being tested. I am told that my level directly corelated with the B12 I was taking at the time. Now I take double that dose. I now find that I also have thyroid problems and that could account for some of my neuropic pain--I see an endo on May 17th.

I threw the script away and changed my diet, even harder than gluten-free but doable and have not had a morning reading over 95 now in 6 months. I feel differently about this. Kev is type 2 diabetic and he can not believe where gluten hides and how difficlut it is to find things I can have. A celiac can not have gluten, it's poison to us. A diabetic does not have to give up anything totally and a slip does not make a diabetic ill like gluten does a celiac. Of course, I am not just gluten free, I also have an intolerance to all grains and nightshades, so that could account for how I feel about this statement. It's much more difficult to eliminate all grains from your diet. A celiac and a diabetic could eat much the same diet and both be healthier. I am beginning to think that everyone would be healthier without gluten!

[Rahel]

Beginning in 2005, I have endured unexplained and undiagnosed neurological symptoms. I've taken just about every test doctors can think of and there doesn't seem to be any answers for me.

Among the tests were anti-gliadin IgG and IgA tests, which I understand are the hallmark tests for Celiac disease. Both came back negative or within normal levels.

I'm wondering how common neurological involvement is in Celiac disease?

Sometimes my fingers get so affected that I lose sensation in them --it feels like I'm wearing a light pair of latex gloves.

I have had periphrial neuropathy in both hands, feet, arms, legs. After going on a gluten-free diet, I notice great improvement after three days. Improvement has continued, with occational setbacks, just more slowly. I can first notice that gluten has somehow gotten into my diet when I start to lose feeling again in the bottoms of my feet and tips of my fingers. Unfortunately, the nerve pain is slower to go.

[Rahel]

I forgot to note just now that I got a negative back for my blood test. However, the dramatic change in how I feel without gluten is enough for me to decide to keep away! Even with very, very small amounts, my suffering increases. (I have been losing ground and could not figure out what it was...then I realized that the drops of Beano that I had been taking to aid in my digestion contain wheat.)

I'm indebted to you for the illustration of the latex gloves--what a descriptive and accurate way to explain that feeling.

[Smarie418]

Beginning in 2005, I have endured unexplained and undiagnosed neurological symptoms. I've taken just about every test doctors can think of and there doesn't seem to be any answers for me.

Among the tests were anti-gliadin IgG and IgA tests, which I understand are the hallmark tests for Celiac disease. Both came back negative or within normal levels.

I'm wondering how common neurological involvement is in Celiac disease?

The symptoms I have are intermittent. They are typically extremely uncomfortable and painful including the following:

1. Stinging pain in the joints, knees, elbows, wrists, etc.

2. Stinging pain in the eyes

3. Burning tongue

4. Stinging pain the private areas

5. Stinging pain and pins/needles in the feet and hands

6. Tinnitus

7. Stomach pain.

8. Neck pain

9. Muscle twitching in limbs

Sometimes my fingers get so affected that I lose sensation in them --it feels like I'm wearing a light pair of latex gloves.

Considering the above negative tests I've had, I'm not sure this is Celiac disease, but I'll try anything to get this to stop. Question is, I wonder how long it would take for me to see results if I were to simply try a gluten-free diet. Would it be weeks? Months?

Thanks and I appreciate any insight.

I have had neurological symptoms since I was about 12 years old. They didn't progress till I was 24 years of age. Now I can't walk without a walker. I have had the baclofen pump surgery because I am diagnosed with Dystonia. Ever since my surgery in July 2008 I have been using a walker and a wheel chair for long distances. I started the gluten free diet like 4 weeks ago and already am feeling more refreshed and more active. I can't run a marothon but I see littlle improvement in 4 weeks. I am confident that this is the problem. I have been through so many testing for all the neurological diseases like you and my doctors are clueless about what I have too. My diagnosis is dystonia but yet dystonia is the symptom of whatever I have.

I am a big researcher and so is my sister. She is the one that told me about celiac and neuro problems. My brother in laws sister was diagnosed with MS but it turned out she had a gluten allergy......Its amazing that these doctors ignore research.