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Up to 16% of Patients with Small Fiber Neuropathy May Have Celiac Disease

Celiac.com 06/25/2003 - The Neuropathy Association -- On May 27, 2003 a link between Peripheral Neuropathy and Celiac Disease was reported by physicians at the Weill Medical College of Cornell University and New York Presbyterian Hospital, according to The Neuropathy Association. Peripheral Neuropathy, which affects up to 20 million people in the U.S., can cause pain, numbness and weakness in the arms and legs and, when left untreated, can progress to debilitation.

In an article published in todays Neurology, five percent of all patients with neuropathy were found to also have celiac disease, which results from an allergy to gluten in bread and other wheat products, and is estimated to affect one out of every 150 people. Based on the diagnosis, we are now able to treat a substantial number of patients with neuropathy who previously could not be helped, said Dr. Russell Chin, the first author of the paper.

In addition, patients with celiac disease tended to have a type of neuropathy called small fiber neuropathy which often causes severe burning, stinging, and electric-shock like pains, but is often misdiagnosed as it is undetectable with routine tests used by neurologists to diagnose neuropathy. Approximately 16% of all patients with small fiber neuropathy were found to have celiac disease. Many of our patients were told that there was nothing physically wrong with them, and were advised to seek psychiatric care for presumed anxiety or depression, noted Dr. Norman Latov, Medical and Scientific Director of The Neuropathy Association, and senior author of the study. You too would be anxious and depressed if you were in constant pain, and no-one believed you or offered to help.

Celiac disease is known to run in families, and in several of the cases, other family members were affected. Some were erroneously diagnosed with Charcot-Marie-Tooth disease, an inherited form of neuropathy due to genetic mutations. Not all familial cases of neuropathy are due to Charcot-Marie-Tooth disease, noted Dr. Latov. Peripheral neuropathy can also occur in association with other causes for neuropathy that run in families, such as diabetes or autoimmunity, for example.

The article also notes that one third of the celiac neuropathy patients did not have any gastrointestinal symptoms such as malabsorption, abdominal pain or diarrhea, which are associated with celiac disease. What many people dont realize, notes Dr. Peter Green, Director of the Celiac Disease Center at the New York Presbyterian Hospital, and co-author of the paper, Is that 50% of adults with celiac disease have few or no gastrointestinal symptoms, and present with other manifestations such as anemia, or as in this case, peripheral neuropathy. Treatment consists of eliminating gluten or wheat containing foods in the diet.

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At present, patients with neuropathy are not routinely tested for celiac disease. Based on the new study, however, patients and physicians should be aware that anyone with unexplained neuropathy or pain should be tested for celiac disease regardless of whether or not they have the classic gastrointestinal symptoms.

About The Neuropathy Association:
The Neuropathy Association is a public, non-profit, charitable organization, founded by patients with neuropathy and their friends and families, whose mission is to provide support and education, and fund research into the causes and treatments of neuropathy. It is a rapidly growing, broad based organization, with over 70,000 members, and over 200 support groups and chapters throughout the US. For more information about peripheral neuropathy and The Neuropathy Association, visit our web site at http://www.neuropathy.org, or contact us at 60 E. 42nd St, Suite 942, New York, N.Y. 10165, Tel: 212-692-0662, e-mail: info@neuropathy.org.

Contact information:

Media Contact: Jeanne Abi-Nader
Tel: 212-484-7954
E-mail: jabi-nader@rlmnet.com

Norman Latov, M.D., Ph.D., Professor of Neurology and
Neuroscience, Weill Medical College of Cornell
University, and Medical and Scientific Director, The
Neuropathy Association.
Tel: 212-888-8516
E-mail: nol2002@med.cornell.edu.

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4 Responses:

 
Rachel
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said this on
04 Nov 2007 8:56:01 PM PST
I cannot tell you how excited I was to find this. Period. I have been in excruciating pain since March and this sounds just like me. I printed it out to show my Doctor at our next visit.

 
Natalie McVay
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said this on
13 Feb 2008 7:03:53 PM PST
FINALLY, some reason for my pain. I've been suffering for 2 1/2 years. I have seen foot doctors, orthopedic surgeons, been tested for rheumatoid arthritis and now scheduled for an EMI. I'm taking this article to my Doctor.

 
Jean Stanish
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said this on
17 Oct 2008 6:12:27 AM PST
This article was very informative.

 
Leslie
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said this on
20 Sep 2016 9:45:29 AM PST
This article has been so very helpful! My 9 year old daughter had been diagnosed with reflex sympathetic dystrophy almost 2 years ago due to her burning pain that she woke up with one night. We went to ortho surgeons, rheumatologists, pain specialists, as well as all the emergency room visits and physical therapists. She is now gluten free and is doing amazing! She still gets pain sometimes but we can usually find a reason of some sort of possible cross contamination that might have happened. Another thing that I think contributed to her getting better is the probiotics she takes daily now. Healing her gut has drastically healed the other parts of her body!!!
I would like to ask if anyone here has been diagnosed with mast cell activation disorder. My daughter was through all of this and I cant help but wonder if others have had this happen too.




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Thank you i have the colonoscopy on Tuesday and am dreading the prep more than anything lol. I think what ever the outcome I will try a gluten free diet to see if it helps with the symptoms. I've read so many stories of people going gluten free and symptoms such as depression, anxiety...

A positive on any one celiac test should lead to an endoscopy/biopsies being done by a gastroenterologist. You should keep eating gluten until the endoscopy is done.

Hi LexieA, It's perfectly ok to grieve or feel down because of a diagnosis of celiac disease. Feelings are not obligated to perform on command. But, over time you can adjust to the new diet reality and even like it. Getting used to eating mostly whole foods and more natural foods is a goo...

Hertzya, Congrats to you for sticking with your service in spite of celiac disease. That seems like it would be hard to do, And thanks for your service to our country!

Thank you all