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Found 9 results

  1. I would like to hear from Celiacs with Chronic Kidney Disease. Recently there has been more research of a correlation between the two. I was recently diagnosed. I have been able to find a little information on a combined renal and gluten free diet. What I have not discovered yet is the comparison of gluten free flours and wheat flour in terms of phosphorus content levels. Here is a synopsis of my sudden diagnosis. I hope it helps someone else, as well as finding someone to support me. About a year ago the night sweats unrelated to menopause started, I began to notice an extremely dry mouth (worse than ever before) and as time went on I had a constant bad taste in my mouth. Additionally I noticed my blood pressure levels became erratic. I reported all of this to my three specialists and one primary doctor, the last of which was doing a CBC every three months. In September my primary care referred me to a nephrologist due to abnormal creatinine levels in my blood, although my urine had no negative test results. Days after I met the nephrologist he put me in the hospital with a diagnosis of Stage 5 (End Stage) Renal Failure. When I left a week later they had gotten it down to Stage 4. Since then I've had a kidney biopsy. My kidneys are permanently damaged due to scarring with 50% functioning. There is no known reason for this. Tests prior to January of 2013 showed no creatinine disfunction. My nephrologist told me there is growing research showing a correlation between Chronic Kidney Disease and Celiac Disease. Given my situation, I suggest you have your creatinine levels tested and GFR calculated. Request that you be followed carefully and frequently if your creatinine is lower than 95. 11 months ago mine was 90 and my physician did not note it until it dropped to 40. I don't know if he or I had known this sooner my kidney disease perhaps would not be at Stage 4 now. This means I must go on dialysis and will need a transplant eventually.
  2. I have had lupus fibromyalgia ibs or spastic colon since 1998. Now i had allergy testing labs on blood. Im allergic to gluten, almonds, oats, barley, cadida yeast, aspiragillys(molds), broccoli, cabbage, clams goats milk, kidney pinto navy and soybeans, pork, sesame, spinach and canola oil. I don't know what to eat now. I've always eaten say at olive garden or anything and had terrible stomach pains like labor. Then run to the bathroom. Or constipation i cant go for a week or so. I tried spark vitamin drink had gluten, soy powder allergic. Health bars larabars gluten. My weight can be 129 one week 120 next or go to 104 fast. Not sure what to do now. How can regain my life back? Could i have celiac not ibs? I have 3 other auto immune system diseases. Any food resources would be great and vitamins with no soy or gluten. Plus beverages. Ive had hives a month now from my almond butter gluten and vitamin drinks lol steroids and epi pen. Oh and high cholesterol. So everything i ate to lower that im allergic to. Plus a list of secondary allergy foods a mile long.
  3. Hi all, I don't know whether kidney disease is celiac related or not but hopefully someone here can advise. I recently had a general blood test as I'd been feeling unwell. I think I've been glutened tbh but I also felt lethargic and out of sorts. I asked for thyroid and other levels to be checked. Frustratingly they didnt run the TTG - something I'm really down about. Anyway, The doctor looked at my test results and told me (via the receptionist) there was nothing to worry about. Given past experiences I requested a paper copy of the results and I found the following under the renal profile section:Renal profile 142 (135-145)Serum Sodium 4.7 (3.5 5.3)Serum potassium 5.5 (2.5 - 7.5)Serum urea 93 (62 - 120)Serum creatinine 93 (62 - 120)GFR 77ml/min/1.73m^2 - STAGE 2: CKD only if other evidence of renal damageThe doctor is presumably happy with this but I'm a little concerned. Should I ask for a doctors appointment and perhaps a urine test? Is the GFR result on its own not sufficient reason to investigate further? Many thanks for any advice you can offer Matt
  4. The following was taken from a lecture given by Dr. Joseph Murray in October, 1996. It was published by the Sprue-Nik Press (Published by the Tri-County Celiac Sprue Support Group, a chapter of CSA/USA, Inc. serving southeastern Michigan) Volume 5, Number 9, December 1996. Dr. Joseph Murray, one of the leading USA physicians in the diagnosis of celiac disease (celiac disease) and dermatitis herpetiformis (DH). Dr. Murray (murray.joseph@mayo.edu) of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease: Q: Is there any kidney disease associated with celiac disease? A: Yes: IgA nephropathy, which is a common condition causing blood in the urine (possibly in microscopic amounts that would not be detected visually), may be caused by celiac disease. This may be similar to what happens in DH, where antibodies produced in the intestine get deposited under the skin. In IgA nephropathy, youve got IgA that was produced somewhere (we dont know where) getting deposited in the kidneys, causing secondary damage to the kidneys.
  5. Celiac.com 05/21/2014 - A team of researchers recently studied the risk of renal disease in patients with both type 1 diabetes (T1D) and celiac disease. The research team included K. Mollazadegan, M. Fored, S. Lundberg, J. Ludvigsson, A. Ekbom, S.M. Montgomery, and J.F. Ludvigsson, with the Clinical Epidemiology Unit of the Department of Medicine at the Karolinska Institutet in Stockholm, Sweden. For their study, the team used the Swedish Patient Register to review data on cases of T1D recorded at or before 30 years of age between 1964 and 2009. The team used biopsy reports from 28 pathology departments in Sweden between 1969 and 2008 to gather data on patients with celiac disease with villous atrophy (Marsh stage 3). They found 954 patients with both T1D and celiac disease. They age and sex-matched each patient with T1D + celiac disease to five reference individuals with T1D only (n = 4,579). They used Cox regression to estimate the following risks of both chronic and end-stage renal disease in patients with celiac disease + T1D compared with T1D patients only. They found that forty-one (4.3%) patients with celiac disease + T1D and 143 (3.1%) patients with T1D only developed chronic renal disease. This corresponded to an HR of 1.43 for chronic renal disease (95% CI 0.94, 2.17) in patients with celiac disease + T1D compared with T1D only. In addition, for end-stage renal disease there was a positive (albeit statistically non-significant) HR of 2.54 (95% CI 0.45, 14.2). For chronic renal disease, the excess risk was more pronounced after >10 years of celiac disease (HR 2.03, 95% CI 1.08, 3.79). Overall the two groups showed similar risk estimates when the cohort was restricted to T1D patients who had an inpatient diagnosis of T1D; those who had never received oral glucose-lowering medication; and (3) those who had not received their first diabetes diagnosis during pregnancy. The team found no excess risk of chronic renal disease in patients with T1D and celiac disease. Interestingly, a sub-analysis did show a connection between long-term celiac disease and chronic renal disease in people with T1D. Source: Diabetologia. 2014 Mar 25.
  6. Just wondering - I've got someone in my life who is looking for a donor. Thanks,
  7. Hi, I had a bad accidental glutening incident recently. I purchased a box of chocolate in Poland which looked safe to eat. Stupidly, I assumed if there were gluten ingredients, that would be called out in the allergen warning. That turned out not to be the case, and I had a reaction. My typical symptoms are usually a kidney or bladder infection, depression, anxiety, memory problems, issues with focusing and concentration. All of which I have been experiencing since I ate the chocolate. I'm not sure which ingredient is the culprit, but I'm guessing that a cheap, not fully distilled alcohol was used. Normally, I have no problems with distilled grain alcohols. Just wanted to pass my experience along and hopefully save someone else from the same mistake. I've listed the ingredients below. -Marie Ingredients listed as follows: sugar, corn syrup, cocoa mass, cocoa butter, alcohol, stabilizer (invertase), emulsifiers (soy lecithin, polyglycerol, polyricinoleate, and sorbitan tristearate), artificial flavors. Allergen warning states that it contains soy, and may contain traces of egg or milk.
  8. Hello everyone! I am a new member, but have been lurking for a few days. I received my diagnosis about a week ago between Christmas and New Years. I am both relieved and anxious about the diagnosis. Happy to know what is making me sick, but it is a lot to take in! SO MANY QUESTIONS!!! Well, seems like I found the right place to ask those questions. To skip my personal story about being repetitively misdiagnosed before receiving a proper diagnosis, scroll to the end of my story for the questions. I just wanted to share my experience. -------------------------------------------------------------------------------------------------------------- So, here is where I want to begin. Here is my story, questions attached: In my experience, I have been sick since I was a small child. I became anorexic at age 8, not for vanity, but because I simply felt better when I didn't eat. Then I became more sick and was diagnosed with hypothyroid disease. I started eating 'normal' again while taking synthetic thyroid hormones and then my weight ballooned into my early teens. Then my same doctor that diagnosed me with hypothyroid disease took me off the synthetic thyroid medications when blood work returned with results showing that I no longer had hypothyroid disease.... weeiiiird. Then it happened again off and on, not two, not three, but four times throughout highschool. Thyroid problems came and went. I then developed cystic nodules all over my body and was put through more than one round of accutane. The cysts would disappear after 8 or so months on accutane, I would come off the accutane, be clear for a week or two, then... BLAM! Covered in cysts again! Little did I know, hypothyroidism and cysts were symptoms... it gets a little more weird. So, into my college years, I had a body full of scars, cysts, thyroid problems, SEVERE fatigue, inability to focus, and sudden complications with my kidneys. It soon became normal to be in pain, not remember anything/fuzzy memory, and have blood in my urine. (my grades dropped at this time - straight A's to D's and a few F's Parents were angry and didn't listen when I gave them my reasoning.. I felt like s$#&aki mushroom). Doctors put me on kidney medications and then accutane. I became anorexic again. The symptoms cleared and I felt good again... for a few months (I wasn't eating after all). I mean, my skin was clear... not a single cyst OR pimple! I could breathe better AND I had energy. I was even making straight A's again!!! Then it occured to me that I may have food allergies. So I saw an allergist and was then diagnosed with food allergies: dairy, wheat, ginger, and sweet potato. (And THEN my mom decided to tell me that she was hospitalized while pregnant with me for consuming dairy!) angry face, fist shake. I began eating well. The pain would sometimes happen and the cysts returned... but they no longer covered my entire body. I would have maybe eight cysts on my back and 5 or 6 on my face at a time. I wasn't complaining... it was the best I had felt in years. Even if I did have a few off days! My parents still believe my drop in grades having nother to do with my health... I'm serious... I study hard and never party...blah blah blah. I'll save THAT (parental reaction and grades) for another topic. Then I had a few episodes... so severe... I ended up in the ER several times this past semester. (grades: managed to do okay, but nothing spectacular). The doctors told me that I not only had debri in my kidneys, but I may be developing more severe problems as well.... possibly might develop kidney disease. I was placed at high risk. :( I got to where I started drinking a gallon of water a day, no tea, no soda, no coffee, etc. I felt better as a result but still had severe pain. I would have a hard time walking between classes and even doubled over on the sidewalk a few times because it felt as though someone had shoved a few knives into my gut and they were twisting them in many different directions at once. I saw the school doctor and disability office and they e-mailed my teachers as a result. I was allowed a few extra minutes to get to my classes. Which, believe me, I needed! There is a strict attendence policy at my university where 3 tardies/lates = 1 absence and 3 absences = 1 drop in a letter grade. Sometimes I would be on time, sometimes 5 minutes late, every time in pain. I just couldn't live like this anymore! So I went to the same doctor I had been seeing as a child over the break. She told me that she was going to have two separate blood tests done and not to eat for 24 hours before my appointment. I followed orders and came in. She drew blood, labeled it, and then handed me some rye bread to eat. An hour later, she drew more blood. Two weeks later, I came in to hear that I had low amounts of IgA and IgG antibodies in the first blood test, but in the second blood test... the amounts were HIGH. So, after a few more tests, the results are in. I have celiac disease. I am so RELIEVED. After a LIFETIME of health complications, I have an answer. I know I have only been gluten free for a few days (I am avoiding my allergens too), but I am looking forward to becoming healthy and having energy again! ------------------------------------------------------------------------------------------------------------------------- Here is my question for you guys! Before being diagnosed with celiac disease, were you diagnosed and treated for other things that were actually related to/tied to celiac disease? If so, what was your misdiagnosis? How did you feel to finally know that you had celiac disease?
  9. The following report was prepared by Ann Whalen, celiac, and editor/publisher of Gluten-Free Living , which is a bimonthly newsletter for celiacs - Gluten-Free Living, PO Box 105, Hastings-on-Hudson, NY 10706. On March 10th, more than 20 members of the celiac community and celiac disease specialists (see list at end) attended a meeting of the Digestive Diseases Intra-agency Coordinating Committee, a part of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The meeting, held to update the current status of Celiac Disease, was chaired by Jay Hoofnagle, M.D., Director of the Division of Digestive Diseases and Nutrition at the NIDDK. At the meeting, presentations were made by Martin Kagnoff, M.D., Joseph Murray, M.D., Alessio Fasano, M.D., and Frank Hamilton, M.D. Dr. Kagnoff is a gastroenterologist and Professor of Medicine at the University of California, San Diego. He spoke about his research into the genetics of Celiac Disease, focusing on the pathogenesis. Dr. Kagnoff is well known for his research into the genetics of Celiac Disease, and several of his studies have been funded by the NIH. Dr. Murray, Associate Professor of Medicine and clinician at the University of Iowa Hospitals and Clinics, described his experience with Celiac Disease both in Iowa and in Ireland, noting that his interest in celiac disease is clinical. He emphasized what he called the Classic II symptoms, meaning the actual symptoms patients have today and not the Classic symptoms many doctors may be familiar with. He said the rate of diagnosis is proportional to suspicion. Dr. Murray described the celiac disease experience at the University of Iowa from 1985 to 1997, presenting statistics that indicated a steep increase in diagnosis. At our institution, Celiac Disease is an adult disease, he said, and is now seen as frequently as Crohns Disease. Anticipating the question, Why look for Celiac Disease?, Dr. Murray gave his reasons: preventing lymphoma and osteoporosis, as well as resolving fatigue and nonspecific symptoms and shortening the current significant delays in diagnosis. Dr. Fasanos presentation was called Where Have All the American Celiacs Gone? He described what has happened in the field of celiac disease in various parts of the world, including some parts of the United States, but emphasized the European experience. Dr. Fasano noted that plans are already underway in Italy to screen all seven-year-olds in 1999. Dr. Fasano explained why an epidemiology study is critically needed in this country. He pointed out the benefits of such a study for four groups: The American health care community: lower health care costs, increased awareness of celiac disease and more knowledge of its protein manifestations in the US Participating physicians: publications, more patients and increased credibility. The American people: the prevalence will be established and celiac disease will be diagnosed more quickly. Celiac Patients: free screening of first-degree relatives, federal support for dietary and drug regulations, an improved food supply, stronger local support groups and more funding for celiac research. Dr. Fasano added that such a study, whatever its findings, would end in a win-win situation for everyone. If the study shows that celiac disease is underestimated in this country, patients will benefit as physicians begin looking for the problem with the knowledge that they might well find it. If the study shows celiac disease is indeed rare in the United States, its even more exciting because we will be able to figure out why. Dr. Hamilton, chief of the Digestive Diseases Program Branch at the NIDDK, briefly described the celiac disease research, to date, that has already been funded by the NIH. He said $1.4 million has been granted for such research, adding that over the last five years, we have seen growth in the funding of Celiac Disease. He said he was pleased funding has increased, and felt a lot of work has to be done. Dr. Hamilton ended by saying, Todays meeting will serve as an impetus for a partnership between the National Institutes of Health, academe, and the lay groups to foster more research. He added that it was important for the investigators and support group representatives present at the meeting to get the word out, referring to information about Celiac Disease. These talks were followed by a round table discussion, between the members of the committee and the presenters. Later, audience comment was invited. The committee showed an interest in the current adult nature of the disease, the changing symptoms, current testing methods, and identification of the most critical research needs. Patients who spoke were anxious to let the committee know what they felt were the important concerns in the real world. At the end of the meeting, Dr. Hoofnagle said his division will prepare a short, pithy plan, then present it to Drs. Kagnoff, Murray and Fasano. He noted that the important issues are pathogenesis, delivering the message to physicians, clinical research issues and pediatric health concern. Some Quotes from the Meeting Elaine Monarch: There is a general lack of knowledge, awareness and interest in Celiac Disease among the medical profession. We celiacs can go for years with substantial symptoms but not diagnosis...The cost to the medical community is enormous. Joseph Murray, M.D.: There is more than one gene involved in Celiac Disease. Most Europeans are homogenous. Here we have a mongrelized population. What happens when you mix? How much does it change? Our mongrelized population may be at risk at a later age. Martin Kagnoff, M.D.: The issue of other genes is not at all clear. Like Joe (Dr. Murray), I see adult celiacs. Their time delay to diagnosis is not exaggerated, but what is striking is the lack of knowledge of doctors, even at the University of California. They really are not aware of this disease. Alessio Fasano, M.D.: We receive 10-15 calls a day. The vast majority are self diagnosed. They say, I know more than my gastroenterologist. Peter Green, M.D.: We need to emphasize education of gastroenterologists. At my institution (Columbia-Presbyterian Medical Center in New York City), doctors are not used to looking at the duodenum...We need to educate many levels of the medical community and tell them, If you dont recognize something, take a biopsy. Sue Goldstein: Im concerned about the people who have not yet been diagnosed and the reasons why a physician wont consider Celiac Disease. It all boils down to, its rare and you cant have it. In addition to the speakers, the following were among those who attended: Phyllis Brogden, celiac, founder and chairperson of the Greater Philadelphia Celiac Sprue Support Group. Winnie Feldman, celiac, Celiac Disease Foundation Kenneth Fine, M.D., gastroenterologist/ researcher at Baylor University Medical Center in Dallas. Al Fornace, M.D., celiac, National Cancer Institute Sue Goldstein, celiac, founder and advisor, Westchester Celiac Sprue Support Group Peter Green, M.D., clinician/researcher at Columbia-Presbyterian Medical Center in New York City. Joanne Hameister, celiac, former chairperson, Western New York Gluten-Free Support Group Ivor Hill, M.D., clinician/researcher at Bowman Gray School of Medicine, Winston-Salem, North Carolina. Beth Hillson, celiac and proprietor of the Gluten-Free Pantry. Karoly Horvath, M.D., clinician/researcher at the University of Maryland School of Medicine in Baltimore. Marge Johanamen, celiac, CSA Kentucky state coordinator Pam King, University of Maryland Bob Levy, Celiac Research Foundation Ruth Levy, spouse Jax Lowell, celiac and author of Against the Grain Elaine Monarch, celiac, founder and Executive Director of the Celiac Disease Foundation Selwyn J. Monarch, Board of Directors, CDF Diane Paley, celiac, governing board CSA/USA Michelle Pietzak, M.D., pediatric gastroenterologist at Childrens Hospital, Los Angeles Connie Tur, celiac, president Greater Louisville Celiac Sprue Support Group
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