<<Disclaimer: Verify this information before applying it to your situation.>> Hello, James Young (http://maelstrom.stjohns.edu/CGI/wa.exe? A2=ind0009D&Liliac&P=R180) recently presented a summary of responses he received about neuropathy and celiac disease (CD). I noticed that pellagra, a deficiency of niacin, was not mentioned. Because I have had excellent success at relieving an apparent severe neuropathic pain in my left foot with niacin, my experience with this apparent peripheral neuropathy and niacin might be of interest to those with CD and to those whose neuropathy remains undiagnosed and treated. 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 http://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 learned 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 the vitamin 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 assumed 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. I have found that I am also deficient in zinc. For many years I have had white fuzzy spots on my fingernails. These spots have been reported as a CD symptom, but my physicians repeatedly told me they were caused by trauma. By trial and error I have found that I can eliminate these spots by taking 35 mg of zinc (RDA 15 mg) divided into four daily doses. If I miss a dose a spot will shortly appear. This increase in zinc appears to have also helped to improve my immune system. The above indicates to me that I have at least two vitamin deficiencies that exceed the RDA which need to be treated by more that a single daily dose. The niacin relieves apparent nerve pain that seems to be a form of peripheral neuropathy. An interaction of niacin and zinc metabolism occurs in patients with alcoholic pellagra (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve&db=PubMed&list_uids%26999&dopt=Abstract). This suggests to me there may also be an interaction in pellagra as it relates to patients with CD. Perhaps the above will encourage others with unresolved CD problems and peripheral neuropathy to consider supplemental doses of niacin and perhaps other vitamins. Some pellagra related symptoms may reflect the fact that many gluten-free foods are not enriched in niacin. I presume one should check with a physician before taking vitamins in excess of the RDA; however, my efforts have not fruitful. Therefore, I researched both niacin and zinc to be sure there should be no ill effects at the dosage I am taking. Certainly the exact vitamin supplement regime which has helped me may not help others, but perhaps the process through which I have found relief may offer guidance. On the basis of my experience it is unlikely that one can expect to get much help from the average physician. Bob Dickinson