For those with neuropathy and no known cause

[ViewsAskew]

I was on the celiac forum this morning and found this post about neuropathy. Celiac disease can present with over 200 symptoms, and some people have no symptoms. But it interested me that a lot of people have neurological symptoms that could be thought to be RLS or diabetes or some other cause, yet testing would find nothing.

So, if anyone had neuropathy with no disclosed cause, this is worth getting a TTG test done to find out if your antibodies are elevated. While no one wants another disease (especially an autoimmune disorder), if I had to have one, it would be this one. Here is the abstract:

Peripheral Neuropathy Center, Department of Neurology and Neuroscience, Weill Medical College of Cornell University, New York, NY 10022, USA. RUC9002@med.cornell.edu

BACKGROUND: Celiac disease (CD) is a chronic inflammatory enteropathy resulting from sensitivity to ingested gluten. Neurologic complications are estimated to occur in 10% of affected patients, with ataxia and peripheral neuropathy being the most common problems. The incidence and clinical presentation of patients with CD-associated peripheral neuropathy have not previously been investigated. OBJECTIVE: To determine the incidence of CD in patients with neuropathy and to characterize the clinical presentation. METHODS: The records of 20 patients with neuropathy and biopsy-confirmed CD were reviewed. RESULTS: Six of the 20 patients had neuropathic symptoms alone without gastrointestinal involvement, and neuropathic symptoms preceded other CD symptoms in another 3 patients. All patients had burning, tingling, and numbness in their hands and feet, with distal sensory loss, and nine had diffuse paresthesias involving the face, trunk, or lumbosacral region. Only two had weakness. Results of electrophysiologic studies were normal or mildly abnormal in 18 (90%) of the patients. Sural nerve biopsies, obtained from three patients, revealed mild to severe axonopathy. Using the agglutination assay, 13 (65%) of the patients were positive for ganglioside antibodies. Excluding patients who were referred with the diagnosis of celiac neuropathy, CD was seen in approximately 2.5% of all neuropathy patients and in 8% of patients with neuropathy and normal electrophysiologic studies seen at our center. CONCLUSION: CD is commonly associated with sensory neuropathy and should be considered even in the absence of gastrointestinal symptoms.

[jan3213]

Ann

I can't believe I just NOW saw this particular post. I've really missed something here. You've talked to me about getting a test for CD, but NOW I'm going to do it!!!!

You said:

CD is commonly associated with sensory neuropathy and should be considered even in the absence of gastrointestinal symptoms.

Also, a review of 20 patients' records with CD revealed:

All patients had burning, tingling, and numbness in their hands and feet, with distal sensory loss, and nine had diffuse paresthesias involving the face, trunk, or lumbosacral region.

As you have told me, it's certainly worth a try! Thanks, Ann, for doing another great job researching --- and, thanks for caring about those of us with PN.

Jan

[ksxroads]

Great timing as I have drs appt tomorrow ... And I am glad you found this Jan!

burning, tingling, and numbness in their hands and feet, with distal sensory loss, and nine had diffuse paresthesias involving the face

Pam, my friend with CD has suggested repeatedly that she thinks that I might have it.

Thanks Ann! And you too Jan for bringing this back up! Hazel

[sardsy75]

Jan & Ann

Thankyou both for this post!

So, if anyone had neuropathy with no disclosed cause, this is worth getting a TTG test done to find out if your antibodies are elevated. While no one wants another disease (especially an autoimmune disorder), if I had to have one, it would be this one.

Peripheral Neuropathy Center, Department of Neurology and Neuroscience, Weill Medical College of Cornell University, New York, NY 10022, USA. RUC9002@med.cornell.edu

...All patients had burning, tingling, and numbness in their hands and feet, with distal sensory loss, and nine had diffuse paresthesias involving the face, trunk, or lumbosacral region. Only two had weakness...

The past few months I've been waging war on two fronts ... the first with my feet which become so hot they feel like they're literally on fire; it can last for hours and usually occurs at night.

The second is a most annoying tingling sensation in my hands to the point where they go completely numb; the most recent occurrance was yesterday arvo (thurs) when i was at my fortnightly craniosacral therapy session. I was lying flat on my back, head supported by pillows ... i had my hands resting on my chest (arms not crossed) ... after about 15mins they were "dead" ... "revived" them and tried lying with my arms straight out beside me ... no good, same thing!

I had put both "wars" down to two possibilities ... good ol RLS or my Reynauds. I'm going to research this a little more before diving in and volunteering myself for more tests. I don't mind being a guinea pig, but some time off now and then is nice!!

Thanks again Ann for the heads up!

Take care!

[ViewsAskew]

My pleasure.

For those of you who decide to follow-up with this, please make sure you get the right tests. Celiac is a lot like RLS - few doctors have ANY clue, though people in Europe should fare better. I recently read a post on a CD forum that a gastoenterologist told a patient that his mother has "created" her own celiac by eating too many breads and pastas and the majority of it was in her own head.

Okee-dokee. . .that is so scary! Many people go to get tested and the wrong or incomplete tests are run. Other people have a really hard time convincing the docs to give the tests, especially if there isn't weight-loss. More about that if anyone cares (just let me know).

Here's an explanation of the tests that was listed on the Delphi Celiac Forum site:

Here are the test and an explanation of what they are. There are a total of 6 tests that can be run for Celiac disease.

(1) Anti-Gliadin (AGA) IgA

(2) Anti-Gliadin (AGA) IgG

(3) Anti-Tissue Transglutaminase (tTg) IgA

(4) Total Serum IgA

(5) Anti-Tissue Transglutaminase (tTg) IgG

(6) Endomesial Antiobody (EMA) IgA

Note that AGA is simply the abbreviation for Anti-Gliadin antibody, tTg is for Tissue transglutimase and EMA for Endomeisial antibody. Sometimes you see the letters instead, because writing and saying the words is a pain.

The tests with IgA test for the IgA antibody in the system. The IgG tests test for IgG antibodies in the system. The most indicative tests of Celiac are the tTg-IgA (number 3 above) and the EMA (number 6 above).

What is often referred to as the “Celiac Disease Panel” consists of the first 4 tests above. These are the “standard” tests that should always be run to test for Celiac disease. Number 4 - Total Serum IgA is critical to include. This will tell you if the body is able to produce IgA antibodies. Some people (10% of the population) can’t produce the IgA antibodies and are considered IgA deficient. If you cannot produce IgA antibodies, the IgA tests above (number 1, 3, and 6) will not come back positive for Celiac disease, even if you have Celiac disease. Therefore, you have to rely on the IgG numbers.

They usually only run #5 if Total Serum IgA indicates a deficiency and/or if the AGA IgG (number 2 above) is the only one that is abnormally high.

The EMA (number 6) is very sensitive for CD. However, it is a test that is more difficult to read – meaning that you have to have an experienced lab tech reading the results or there could be an error. The tTg-IgA test is more “idiot proof” in the lab and cheaper to do, so it has become more of the standard instead of the EMA. You can have both done, but it isn’t necessary.


(Jen/Delphi Forum Dec. 2005)

[jan3213]

Thanks, again, Ann. I'm going to talk to my doctor about this.

Now, about the weight loss. What if you GAIN weight? Any ideas?

Thanks
Jan

[ViewsAskew]

There is an article written by one of the most respected CD experts that says the heaviest person he ever diagnosed with CD was over 400 pounds (if I am remembering it correctly - I read it several years ago). It takes many years to damage the villi to the point that you absorb NO nutrients at all. So, they now hypothesize that severe and rapid weightloss happens only in the minority of CD patients. The rest can be anywhere from normal to overweight. Anyway, here's a link to the article: http://members.ozemail.com.au/~coeliac/sprue.html

You may not have CD. Chances are 1 in 100 for the normal population. Odds are higher if you have other auto-immine disorders. It's just one more lead and you need some leads to something! If you don't, you still don't know what you have, but at least you know you don't have this. Not much of a consolation, I know.

Maybe it's the Mirapex - it sure put 50 pounds on me! Feeling horrible and eating because you're so tired and stressed? Exercising less because you are so tired? Gosh, I'm surprised all of us aren't really heavy. It's the one thing that makes me feel sort of good

Ann

[jan3213]

I know you said Mirapex made you gain weight. I've wondered---I've been on it for so long and have struggled with my weight for several years. That's one reason I would LOVE to get off of it. Another is augmentation, as we talked about in another thread.

I may be making myself worse by taking the darn stuff. I need the Wizard of Oz to give me some courage!!!!!

Jan

[ViewsAskew]

That's really easy and really hard. You have the courage (the easy). You need to believe in yourself (the hard). Just like the lion. Think of all the times you've stood up for someone here and suggested that they do something, get different help, etc. You have the courage to help others and offer support to them. You are worthy of the same treatment from yourself. We are all here to help in any way we can. Those that are awake will meet you in the chat room. You can get through it.

[jan3213]

Oh, you're going to make me cry, Ann. You're right. I have to find it within myself. I know I have good friends here. I can count on all of you, I know that. I shouted out to Lyndarae the other night and she was right there. I know the rest of you would have been, too!

Thank you, Ann. Somehow it's easier to help others than to help myself (not that I'm saying I've THAT much help). Sometimes I don't think I have much courage, but maybe I do. Maybe I can do this. Maybe.....

Jan

[ViewsAskew]

Just the like Little Engine That Could. . .

I think I can

I think I can

I think I can. . .