Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Hi everyone, Well, I attended my clinic to-day and received what may turn out to be a bombshell! The Prof (not my usual one) said there may well be a definite link between my CP and my coeliac disease. They believe they have relatively recently identified a condition called " auto-immune pancreatitis " although there are still questions around. (I have seen it referred to on a number of occasions.) Coeliac disease is also an auto-immune disease. It is possible I may have burnt-out auto-immune pancreatitis rather than classic hereditary pancreatitis. He asked if there were any other auto-immune diseases in the family. I told him that my mother, who died of pancreatitis in 1965, had been wheelchair-bound for a few years before her death because of dreadful pains in her joints and limbs; this was diagnosed at the time as rheumatoid arthritis although the diagnosis was questioned at a later stage. She was also incredibly thin and emaciated because of her inability to eat (CP). He said that all auto-immune diseases are hereditary to a greater or lesser extent so I could still have inherited the overall condition from my mother but it would not be classic HP as such. It is also, apparently, possible that the cancer tendency would be weaker than with HP. In the end, very little is known about auto-immune pancreatitis but I'm about to start my research! I'm going to have blood tests to check for antibodies. Prof Sutton also said that I will probably not need an ERCP for another two and a half years as the results of my last one were quite encouraging. (I didn't have the cell mutations which commonly occur prior to cancer developing.) Well, that's my news folks! It may be that a number of mysteries in my life are about to be explained. My mother's illness for one. The docs never really fully understood her condition. My own illness for another. I have definitely experienced my condition as ONE disease, not two separate ones. It may well be that the two things, coeliac and CP, turn out to be two different manifestations of one syndrome. I do hope my friends are well. I'm about to update myself on that hernia and the associated problems, Chrissy. Take care! With love to all, Fliss (UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Fliss, You have celiac disease? I am being tested for it right now. The doctor sent me to the dietician Monday and I started the Gluten free diet yesterday. I had autoimmune pancreatitis before my TP/ICT. Since that time I have not had pain. What sent me to the doctor was that I keep getting stress-fractures so they did a bone density test, and I have osteoporosis at the age of 23. The doctor said that when she looks at the big picture of my medical history it sounds like Celiac disease. She also said that Chronic pancreatitis, especially autoimmune pancreatitis are associated with the disease. Could you share any hints or recipes that you might have for the gluten-free diet? I am struggling to eat anything. Crystal Galloway Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Fliss- What a bombshell! Very interesting news from your doctor. I have Celiac Disease too...(remember we were going to ring in the New Year with lemonade??) I always wondered if there is a connection with CP and Celiac disease. Please let me know what info you find on this, and I will search also and let you know. Since I went Gluten Free I have managed to stay out of the hospital, but not out of pain, but I am always happy when I can stay out of the hospital!! Hugs, Suzi B. Colorado Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Dear sweet Fliss; I know it must be a tremendous relief for you to finally be getting some answers to the life long questions that have plagued you. So are you saying that your mother did not have pancreatic cancer after all? I just want to make sure I understand fully. If so, that is very good news indeed. It is one of the, if not the, most difficult cancer to treat. To know that you wont have to face that must be a God send. Medical science has so much to discover at to exactly why ones own body would attack itself. Auto immune diseases are such a mystery. I was recently sent an information packet about a class regarding the body's inflammatory responses. What triggers the body to form an auto immune disease and its link to many common diseases from alzheimers to cardiac disease and even diabetes, they suggest, is linked to the inflammatory responses. I am seriously considering attending. Its unfortunate that your mother was able to benefit from such new found knowledge; but hopefully you, your children and grandchildren will. My best to Jim. Warmly, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2005 Report Share Posted April 28, 2005 Crystal, I am so sorry that you are still having problem, even if they aren't the usuall pancreatitis ones. Stress fractures are nasty business and I'm sorry to hear you have osteoporosis at such a young age. Are they giving you any calcium supplements such as Fosamax to help you gain more bone density? Sorry about the celiac disease too. Keep us updated on how you do. Kimber -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
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