Comments on: Celiac Disease Prevalence and Mortality http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/ Medical and Scientific News and Stories about Mayo Clinic Mon, 13 Feb 2012 14:37:07 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: mayoclinic http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-6327 mayoclinic Wed, 08 Feb 2012 14:50:43 +0000 http://newsblog.mayoclinic.org/?p=1851#comment-6327 Anna, we're sorry you feel your experience at Mayo Clinic was unsatisfactory. We have an Office of Patient Affairs, and if you wish, you can call and talk to them about your concerns. Minnesota: 507-284-4988 Florida: 904-953-2019 Arizona: 480-342-2651 Anna, we’re sorry you feel your experience at Mayo Clinic was unsatisfactory. We have an Office of Patient Affairs, and if you wish, you can call and talk to them about your concerns.
Minnesota: 507-284-4988
Florida: 904-953-2019
Arizona: 480-342-2651

]]> By: Anna Redding http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-6316 Anna Redding Tue, 07 Feb 2012 18:26:46 +0000 http://newsblog.mayoclinic.org/?p=1851#comment-6316 I have had constant anemia, trouble digesting suddenly, bloating, and now muscle weakness with trouble swallowing and breathing. This has all led to complete debilitation in the last couple months.. I went to Mayo Dec 2011 for their expertise, and without any regard to my symptoms, was told in neurology it all had to be anxiety and sent to pschyologoist. I protested that never had it and tested with no signs on the questionnaire - still told I had to open my mind to anxiety that could appear from nowhere!! Why was celiac not even considered? My family has alot of stomach issues and allergies and I have gone gluten free and am able now to at least get out of bed and walk around. Why oh WHY is not your reasearch being taken seriously at Mayo and at least tested in patients with alot of the symptoms you describe??? I was immensely disappointed in the time and money and treatment I received at the Mayo - from which so many good studies are born... I have had constant anemia, trouble digesting suddenly, bloating, and now muscle weakness with trouble swallowing and breathing. This has all led to complete debilitation in the last couple months.. I went to Mayo Dec 2011 for their expertise, and without any regard to my symptoms, was told in neurology it all had to be anxiety and sent to pschyologoist. I protested that never had it and tested with no signs on the questionnaire – still told I had to open my mind to anxiety that could appear from nowhere!! Why was celiac not even considered? My family has alot of stomach issues and allergies and I have gone gluten free and am able now to at least get out of bed and walk around. Why oh WHY is not your reasearch being taken seriously at Mayo and at least tested in patients with alot of the symptoms you describe??? I was immensely disappointed in the time and money and treatment I received at the Mayo – from which so many good studies are born…

]]> By: Joel Streed http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-6069 Joel Streed Sun, 22 Jan 2012 02:43:37 +0000 http://newsblog.mayoclinic.org/?p=1851#comment-6069 Mary, Thanks for your comment, we'll forward this on to Dr. Murray. Mary,

Thanks for your comment, we’ll forward this on to Dr. Murray.

]]> By: Mary http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-6057 Mary Sat, 21 Jan 2012 17:49:27 +0000 http://newsblog.mayoclinic.org/?p=1851#comment-6057 Dear Dr. Murray, My mother and I became gluten intolerant (we test negative for genetic coeliac markers) at the same *time* not the same age. In the years before we'd been sick and finally in Fall of 2005 we both realized we could no longer eat wheat. I wanted to let you know that my own tiny research has uncovered that it is about this time that a) Hard White Wheat was introduced into the food supply (see www.ndwheat.com/uploads/resources/568/hardwhitewheatbrochure.pdf )and b) it is said that it is possible that some of Montsanto Genetically Modified wheat had escaped into the food supply (see ipm.osu.edu/trans/063_021.htm ). It seems a partnership between your work and others who study the food supply should be in order! I am sure you all communicate, but here's hoping you do! Dear Dr. Murray,
My mother and I became gluten intolerant (we test negative for genetic coeliac markers) at the same *time* not the same age. In the years before we’d been sick and finally in Fall of 2005 we both realized we could no longer eat wheat. I wanted to let you know that my own tiny research has uncovered that it is about this time that a) Hard White Wheat was introduced into the food supply (see http://www.ndwheat.com/uploads/resources/568/hardwhitewheatbrochure.pdf )and b) it is said that it is possible that some of Montsanto Genetically Modified wheat had escaped into the food supply (see ipm.osu.edu/trans/063_021.htm ). It seems a partnership between your work and others who study the food supply should be in order! I am sure you all communicate, but here’s hoping you do!

]]> By: DYKWIA rises to a whole new level - Page 6 - FlyerTalk Forums http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-5622 DYKWIA rises to a whole new level - Page 6 - FlyerTalk Forums Tue, 03 Jan 2012 19:41:18 +0000 http://newsblog.mayoclinic.org/?p=1851#comment-5622 [...] for most is controllable by diet alone) are four times more likely to die early of all causes. (cite) So I'd argue that if you're going to eliminate either gluten or peanuts, eliminating gluten's the [...] [...] for most is controllable by diet alone) are four times more likely to die early of all causes. (cite) So I'd argue that if you're going to eliminate either gluten or peanuts, eliminating gluten's the [...]

]]> By: Celine Bowdwick http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-3389 Celine Bowdwick Fri, 30 Sep 2011 06:17:04 +0000 http://newsblog.mayoclinic.org/?p=1851#comment-3389 So it hasn't been since the 1990s where celiacs diseased has been noticed and seen as something serious! So it hasn’t been since the 1990s where celiacs diseased has been noticed and seen as something serious!

]]> By: Miami Baby Boomer http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-3140 Miami Baby Boomer Fri, 02 Sep 2011 21:06:50 +0000 http://newsblog.mayoclinic.org/?p=1851#comment-3140 I was diagnosed with celiac two years ago. I also have the constipation, coupled with excessive bloating, gut hurts, nausea, and the list goes on. I follow the gluten free diet religiously and still my stomach problems continue to worsen. I just found out that I have iron deficiency anemia (again), no appetite, and have cut back dramatically from dairy products. Next week I'm scheduled for another endoscopy and colonoscopy. I also had a larynceole removed last March. Having these symptoms is not fun. I have to eat small portions at a time. Not fun not being able to go out to eat, participate in luncheons at work, etc. I also have spells whereby my skin begins to inch really bad and my extremities turn red - unbelievable! Needless to say, dating is out of the question. You are right on target about so many physicians that really don't understand all the possible symptoms associated with celiac, nor the impact on a patient's life that suffers from this disease. I was referred to a neurologist for my neck pain (I have scolosis). He told me to lose weight! My BMI is between 24 and 25. I am so thin but my stomach is so bloated and uncomfortable. He knew I had celiac but it was obvious he has no idea how miserable I am. My neck pain is minor compared to my digestive issues. Hope all feel better soon! I was diagnosed with celiac two years ago. I also have the constipation, coupled with excessive bloating, gut hurts, nausea, and the list goes on. I follow the gluten free diet religiously and still my stomach problems continue to worsen. I just found out that I have iron deficiency anemia (again), no appetite, and have cut back dramatically from dairy products. Next week I’m scheduled for another endoscopy and colonoscopy. I also had a larynceole removed last March. Having these symptoms is not fun. I have to eat small portions at a time. Not fun not being able to go out to eat, participate in luncheons at work, etc. I also have spells whereby my skin begins to inch really bad and my extremities turn red – unbelievable! Needless to say, dating is out of the question.

You are right on target about so many physicians that really don’t understand all the possible symptoms associated with celiac, nor the impact on a patient’s life that suffers from this disease.

I was referred to a neurologist for my neck pain (I have scolosis). He told me to lose weight! My BMI is between 24 and 25. I am so thin but my stomach is so bloated and uncomfortable. He knew I had celiac but it was obvious he has no idea how miserable I am. My neck pain is minor compared to my digestive issues.

Hope all feel better soon!

]]> By: Celiac Disease Study Findings - Mayo Clinic http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-3096 Celiac Disease Study Findings - Mayo Clinic Thu, 01 Sep 2011 13:36:01 +0000 http://newsblog.mayoclinic.org/?p=1851#comment-3096 [...] http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-morta… [...] [...] http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-morta… [...]

]]> By: Vyolet http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-1573 Vyolet Fri, 06 May 2011 16:34:54 +0000 http://newsblog.mayoclinic.org/?p=1851#comment-1573 Thanks alot - your answer solved all my pborlems after several days struggling Thanks alot – your answer solved all my pborlems after several days struggling

]]> By: Suzanne Starner http://newsblog.mayoclinic.org/2009/06/29/celiac-disease-prevalence-and-mortality/#comment-1535 Suzanne Starner Mon, 02 May 2011 16:13:29 +0000 http://newsblog.mayoclinic.org/?p=1851#comment-1535 Every year, my physical was good, "Normal" cholestrol, B/P, sugar non existant, liver, etc except for thyroid, Hashimotos, yet, put on so much weight, am obese. 12 yrs ago, specialist said "normal", can't find a thing wrong. Last May, "normal" again. I bloated, put on 5 lbs overnight, week after week. I found a flyer from Prevention, on gluten free for auto immune diseases. I figured what the heck, nothing to lose since I am "normal". almost immediately, I felt alive, tossed sleeping pills as I now sleep like a rock, no more OTC pain pills for knee or hip, Dr finally diagnosed Celiac, he said he didn't know, but now he does. He even had to lower my thyroid meds for I went from hypo to hyper. I have lost 35 lbs by replacing gluten with gluten free foods. I know of 35 people in my small area that have gluten issues, some have come up to me and thanked me for saving their lives. This is a major problem, illness that can only get better with dietary changes. I am now looking forward to a life again. Muscles are still weak from malabsorbtion of nutrients from all the years I have had this, but at least I am walking again, something people should not take for granted. Every year, my physical was good, “Normal” cholestrol, B/P, sugar non existant, liver, etc except for thyroid, Hashimotos, yet, put on so much weight, am obese. 12 yrs ago, specialist said “normal”, can’t find a thing wrong. Last May, “normal” again. I bloated, put on 5 lbs overnight, week after week. I found a flyer from Prevention, on gluten free for auto immune diseases. I figured what the heck, nothing to lose since I am “normal”. almost immediately, I felt alive, tossed sleeping pills as I now sleep like a rock, no more OTC pain pills for knee or hip, Dr finally diagnosed Celiac, he said he didn’t know, but now he does. He even had to lower my thyroid meds for I went from hypo to hyper. I have lost 35 lbs by replacing gluten with gluten free foods. I know of 35 people in my small area that have gluten issues, some have come up to me and thanked me for saving their lives.
This is a major problem, illness that can only get better with dietary changes. I am now looking forward to a life again. Muscles are still weak from malabsorbtion of nutrients from all the years I have had this, but at least I am walking again, something people should not take for granted.

]]>