<<Disclaimer: Verify this information before applying it to your situation.>> Since recently being diagnosed with peripheral neuropathy in my legs, I requested comments as to the possible progression. Thanks so much for the 24 responses that I received which are summarized below. 1) 2 responses indicated that they take Desiprime, an antidepressant. One person has worsened over the years, the other has had some relief but developed other sensations up to the knees plus fatique and lethary. 2) 1 post stated that her dr. said Celiac was not causing the PN, but she also was not staying GF. She still plays tennis. 3) 2 have SjS and Celiac, and take Neurontin. In 1, symptoms completely went away. 4) One post suggests products made by Nikken that combine magnetic and far infrared technologies. Contact 5pillars.com/micki for further info. 5) 3 questioned what PN is. They seem to have symptoms similar to mine. 6) 6 people stated that vitamin deficiencies were likely the cause and suggested either or both B-12 injections, B-6, inositol bound niacin. 2 stated that the lack of nutrition causing the problems would clear up after a GF diet. 7) 1 stated that the symptoms might not be helped by GF diet, that there are a wide variety of symptoms that can lead to death. Recommended Peter Green at Colombia-Presbyterian Medical Center at NY, a CD expert who works with a neurologist. 8) 1 person stated that problems with balance can be a problem with depth perception following treatment for retinopathy with laser. Middle ear can also cause balance problems which should be checked. 9) 1 post has a son who developed PN after going GF. Dr. tested for B12 deficiency but apparently not the cause. Dr. stated probably related to Celiac but didn't know how. Post also stated that nerves take time to heal, but should not get worse. 10) 1 post had a husband diagnosed with CD at 3. Has leg atasia and balance problems to date at 25. 11) 1 suggested giving up dairy next and recommended a Paleolithic diet. Further information at paleodiet.com or paleofood.com. 12) 1 started the inositol bound niacin mentioned above, and his PN has gone away. He sent further info. that he received from a dr. on the list. It was so informative that I have only summarized it in part as follows. Correct me if I'm in error, but from the below, Pellagra is a deficiency of niacin. >>Pellagra is not usually mentioned as related to CD, but vitamin deficiency is apparently a common celiac problem. Pellagra is a known cause of peripheral neuropathy (http://www.medscape.com/medscape/ PhysicianAsst/AskExperts/2000/09/PA- ae17.html) and peripheral neuropathy is known to be a symptom of CD (http://www.celiac.com/frequent.html#symptoms). A good discussion of pellagra and niacin can be found at hpp://www.bookman.com.au/vitamins/ niacin.html, though the article does not mention CD. Carol Lydick (http://maelstrom.stjohns.edu/CGI/wa.exe? A2=ind9903C&L=celiac&P=R186) quoted the following about pellagra from a Dr. William Kaufman MD. PhD. in a Time Life book: "When I began practicing medicine in 1941, before the compulsory enrichment of cereal products, I realized that there was----- ---Patient after patient coming in with a group of symptoms which were quite similar----such as inability to concentrate, depression, irritability, joint complaints, excessive fatigue, bloating and intestinal complaints -----Very soon I recognized that this strange syndrome was probably a form of pellagra that had not yet reached to degree of severity to cause the classic combination of skin rash, diarrhea and dementia (schizophrenia type symptoms), that is typical of niacin deficiency" Many of these complaints seem to be common CD symptoms and I wondered if some that I have experienced, particularly bone pain, could be related to niacin deficiency. I was diagnosed with CD about 1932 after becoming a banana baby. Though it was thought that I was cured, I continued over the years to have many of what I now know are CD related symptoms. I gradually resolved these over several years by going gluten free. By the time I got Internet service and earned the true nature of CD I had been gluten free for some time and blood tests and a biopsy were negative. The physicians I have had over the years seemed to believe the only symptom of CD is diarrhea and since I did not have diarrhea I was told that I did not have CD. As recently as 2 years ago one physician asserted that blood tests were not available for CD. About 2 years ago I had to stop taking my gluten-free daily multi-vitamin because the bottle stated that it should not be taken with an antibiotic being prescribed by my primary care physician for an infection. A pain that I had suffered in my left foot for many years suddenly got worse. It appeared that something in the vitamin pill had been moderating the pain. After reading the above on pellagra I suspected niacin. On taking a supplemental dose of niacin the pain quickly subsided and is now gone when I take a self-prescribed dose of niacin. I have found by trial and error that by taking one Nature's Life One Daily Multiple at breakfast plus 25 mg of niacin for lunch, dinner, and before bed (I split a 100 mg table of Nature's Life niacin) that I can completely relieve the pain. If my foot starts to hurt I invariably find that I have forgotten a dose. I recently tried to switch to Centrum Silver for thevitamin pill and the pain quickly returned so I have gone back to Nature's Life. I also experienced fatigue with the Centrum that resembled past CD related fatigue. I have no financial interest in either Centrum or Nature's Life. A podiatrist had previously diagnosed the pain in my left foot as a Morton's Neuroma, a benign tumor of a nerve running between the second and third metatarsal in my left foot. He gave me a cortisone shot, which relieved the pain for a few days. After the pain returned he stated it was caused by arthritis. The only relief that he offered after two more cortisone shots in the joints was a Tylenol or nonsteroidal anti- inflammatory drug. I am no longer able to take these so was left with pain that made it difficult to walk. Because the podiatrist had insisted that the pain that remained after he treated the Morton's Neuroma was arthritis, I at first ssumed the niacin was relieving arthritic pain in my foot. However, I noticed that the niacin did not relieve other occasional joint pains not relieved by glucosamine and chondoritin. The glucosamine appeared to partly relieve the foot pain. This suggested to me that the pain was probably not from arthritis. Incidentally the glucosamine has mostly relieved pinched nerves in my neck by improving my neck joints. After my wife recently developed peripheral neuropathy in her feet (she has tested positive for CD in blood tests and negative by biopsy), we learned her pain is caused by nerves. I then realized the pain in my left foot that is being relieved by niacin is probably nerve pain and not arthritis. The pain includes characteristic burning associated with peripheral neuropathy, but which does not occur elsewhere with my arthritis pains. I had told the podiatrist that the pain still seemed to be at the site of the nerve, but he insisted he could feel that it was in the joint. Gradually over several months the nerve is no longer sensitive to touch and appears to have gradually healed.The fact that my nerve pain is relieved by 125 mg of niacin indicates to me that I have a daily niacin deficiency that exceeds the USA RDA of 16 mg. Because the pain was present before and after I went gluten free a direct connection to CD cannot be made. However, a gastroenterologist told me that vitamin deficiencies are common in CD patients even after they are gluten free and test negative for CD. Sorry so long, but the above information was so interesting. I am so thankful for this site! Thanks to all, Sandra in Texas