Celiac disease, an immune system reaction to gluten in the diet, is at least four times as common today as it was 50 years ago, according to findings of a Mayo Clinic study published this month in the journal Gastroenterology.
The study also found that subjects who unknowingly had celiac disease were nearly four times as likely as celiac-free subjects to have died during the 45 years of follow-up.
In the video and audio files linked below, Joseph Murray, M.D., the Mayo Clinic gastroenterologist who led the study, describes the study findings and provides background on the disease, its symptoms and treatment.
Note to Journalists:
Audio (.wav) and Quicktime (.mov) video files are provided below for incorporation in your stories. Right-click and “Save as…” to download and save the files.
Study Findings:
Audio File (.wav) – 22 MB
Video File (.mov) – 254 MB
Background, Diagnosis and Treatment:
Audio File (.wav) – 27 MB
Video File (.mov) – 312 MB
Update: Here is the story as it appeared in:
- Minneapolis Star Tribune
- Minnesota Public Radio
- The Savvy Celiac
- HealthDay News
- Rochester Post-Bulletin
- CTV.ca
- Celiacos de Mexico
- Toronto Globe and Mail
- MSNBC.com
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Dear Dr. Joseph Murray, M.D.,
I believe, after years of being very ill and getting worse with each passing day, that I may have Celiac Disease. I knew, and I have said many times over, that something in my environment is making me ill and have searched for answers, to no resolve. I have researched mercury poisoning and many other diseases, just trying to save my own life. I had heard about gluten being a possible cause, but it was the last thing on my list to research, since it seemed to be the least likely, or so I thought. I wish it had been my first, since it may have saved me years of being very ill.
From my earliest recollections, age 2 or 3, I can remember having stomach acid come up into my mouth and trying to get that horrible taste to go away. I also had terrible stomach pain to the point my parents had to take me to the emergency room during a vacation when I was about 4 or 5 years of age. The doctors found, in my early twenties, that I have premature white blood cells and after bone marrow testing, I was told I have something called Leukocytosis, with possible Hodgkin’s in my future. At this point, I basically have no immune system left. I have had what they have called acid reflux and hiatal hernia to the point of waking with food and stomach acid in the mouth and sinuses since the age of 2 or 3 and bowel troubles that have been called anything from irritable bowel syndrome to spastic colon since that age, as well. The doctors have suspected many immune system disorders, from Lupus and Fibromyalgia to MS and Addison’s among many others. My teeth are flaking off and falling apart, as we speak, and I am very ill. My bones and joints ache all over and I run low grade fevers all the time and the fatigue is overwhelming. I have flairs where those symptoms get much worse. I have sleep apnea and have been recorded during sleep studies to fall off into REM sleep from being wide awake during these episodes of high fatigue, which are constant now. I have had several joints spontaneously fall apart for no apparent reason. I was told I have a vitamin D deficiency and have to take heavy doses of it. I suffer with a host of aliments and literally feel like I am dying slowly. There are nights that I lay awake at night, wondering if I will still be alive the following morning because I am so ill. I live in the state of Missouri and have not been able to work due to this illness for nearly 10 years now. I have looked into visiting the Mayo Clinic, but they don’t take Missouri Medicaid. If anyone knows what I need to do to get help, please let me know, I am desperate and dying and have literally lost all I own due to this. The first thing the doctors did when they heard all the symptoms I have , was slap me on anti depressant after anti depressant, which caused me more harm. The list of drugs they have been trying to shove down my throat for various illnesses is well over 200, at this point. I do seem to feel a little better when taking steroids, but the side effects are horrible. I told them that I am not depressed; at least I don’t get depressed, as long as I can control the anxiety due to losing my life and vitality.
I am not the only one in my family that is ill, either. My oldest daughter is a Type I diabetic, diagnosed at the age of 8, who is now 26 and my younger daughter, age 23, is now suffering from fatigue and stomach / bowel trouble at the same age I was when I started thinking this may not be how normal people go around feeling all the time. Many of my family members are ill with similar symptoms and some have a few completely different symptoms, thou not nearly as sick as I have become. Finding out what is wrong with me, will likely save an entire family.
My youngest child, a son that is age 9, has been suffering with stomach troubles since the time he was born and he has started getting sudden nose bleeds, recently. I voiced my concern about my son’s health to his doctor on many occasions since he was born and other people in the family have noticed the dark circles under his eyes all the time. The doctor told me that these dark circles were due to allergies and that he had seen many children with allergies like that. Now I wonder just how close he was to being correct, yet not knowing what was really going on and that this could be Celiac Disease. My son did have some blood work come back with a red blood cell problem back a couple of years ago, but they ran another set of test and nothing appeared and it was dropped and forgotten about. Like I said, I think I have found what is wrong with all of us and just need the help and answers to save our lives.
Sincerely,
Deneen A. Riff
Thanks for your comment. I will pass along to Dr. Murray. There is a blood test that looks for the antibody found in celiac disease (the same test that was done in this study with the blood samples from the 1950s) that could tell whether you do in fact have celiac disease.
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…
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
Hi Deneen, do yourself and your family a great favor and get a qualified test for Lyme disease. find a LLMD (lyme literate MD) in your area and get a test run through IGenX in california. you have all the classic symptoms. and gluten intolerance follows Lyme also, not to mention joint, muscle, nerve, sleep, fatigue difficulties. trust me on this – it’s wider spread than you could even dream!
I just came upon your comment while searching on the mayoclinic site and feel so bad for you. If you can get in touch with Dr. Oz he might have some advice for you or guide you to someone (other doctor) who knows what to do for you. I hope you find an answer soon to your problem.
Addition to my last post: Please know that I did not list all the troubles and symptoms I have been having. I merely listed some of the major ones, but the list is very long and in the interest of saving time, I kept it to only a few of the major symptoms.
Deneen
I live in St. Louis,MO and I work for the National Foundation for Celiac Awareness. Your family sounds as if they have multiple symptoms of celiac. I can help you find a doctor in your area who understands celiac. Where in MO do you live?
Linda
Thanks alot – your answer solved all my pborlems after several days struggling
My son is working and living in St. Louis and he needs a good doctor in ST. Louis for celiac. He is young single and doing this diet is going to be hard .This is all new to him. Dont know where he needs to go from here.Just diagnosed.
Per Dr. Murray, Dr Charlene Prather at St. Louis University is a great GI doctor and Mayo graduate. Dr. William Stenson is an experienced GI doc at Barnes Jewish who has also researched celiac disease.
Is there really any wonder why celiac disease is so common now? The American diet is absolutely horrific, and the amount of sugar that we consume is bound to lead to damage in the intestinal wall; as is seen in celiac disease.
Dr. Haas found a cure to celiac disease in the 1940′s, and it was not the avoidance of gluten forever. The theory of gluten sensitivity came later with a study of just 10 test subjects. The Specific Carbohydrate Diet, as developed by Dr. Haas, still shows remarkable success.
If anyone reading has celiac disease (which is likely) and would like to break free and find a cure, read here:
http://naturallygoodmagazine.com/blog/index.php?entry=entry090705-203726
Hi Donna,
This relates to the Air Force study involving Dr. Murray from the Mayo Clinic, who certainly is a ‘CELIAC EXPERT”.
What is going on that he is getting such attention from this, whereas other methods are failing.
Jane Trevett
I was diagnosed with Stystemic Lupus several years ago. Since then I developed Chronic Anemia that I have to be treated with six weeks of IV iron every few months. Trying to find the cause of my anemia I was tested for Celiac Disease. I tested possitive for the antibodies so I had a biopsy of my small intestine. My hemotologist stated that they found no sprue, so I didn’t have Celiac and that was not the cause of my problems. I don’t understand why I read that there is a blood test for it and I tested positive, yet I don’t have Celiac. Does everyone have a biopsy prior to their diagnosis? Iam very confused.
Thank you
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Following current theories about this condition, I can’t help but wonder if the increased incidence of Celiac disease could be related to some type of viral intervention. There is emerging evidence that a gene, IGRM, that is directly related to Crohn’s/Celiac disease, has recently been resurrected after being inactivated millions of years ago by a human endogenous retrovirus:
“For 25 million years, the IRGM gene was effectively dead. But then, in the common ancestor of humans and the great apes, something unexpected happened. The gene somehow regained its ability to produce a protein, albeit a shortened one. The gene had been resurrected, and ironically enough, its saviour was another genetic hitchhiker that inserted itself in just the right place.”
This may very well be the first documented examples of gene death and rebirth. It would seem to follow that there could be a link with HERVs, the IRGM gene, and the recent increase in gluten intolerance and Crohn’s disease.
I would be curious to hear people’s comments about this theory.
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Thank you for this interesting study! The increased occurrence of Celiac disease is shocking, isn’t it? Your clinic should investigate the possible role of antibiotic use/overuse (a recent phenomenon) in connection with Celiac. I was on antibiotics (500mg tetrocycline 3x per day for 10 years — unbelievable, huh?) for acne back in the 80s. I later had to be treated for Candida problems, and now have gluten intolerance/Celiac.
A study was done which found a connection between Candida and Celiac. The study found the protein in Candida to be remarkably similar to the protein found in gluten that triggers the autoimmune reaction.
Here is the abstract and an article:
http://www.ncbi.nlm.nih.gov/pubmed/12826451
http://www.denvernaturopathic.com/news/celiac.html
Anyway, antibiotic abuse may eventually be found to be the smoking gun in the increase in Celiac cases. *Please* do a study on this!
Very interesting comment Lynn! (I read it just after submitting my post below.)
I had Scarlet Fever in first grade (I’m now in my mid 40′s)and after that illness I was on antibiotics regularly as a child for recurring Strep throat, ear and sinus infections. I also have a heart murmur that developed after that illness and have had to be pre-medicated with yet more antibiotics before dental/surgical procedures. I too have issues with Candida. Ugh!
I will read the abstract and article you posted. Thank you!
And “I second” your request to Dr. Murray/Mayo Clinic to *Please* do a study on the Candida/Celiac connection.
Hi Carol — very interesting. I wonder how many others are out there have a similar antibiotic history to usl? Many of your other symptoms from your post (below) are identical to mine. I too have a heart murmur (diagnosed Mitral Valve Prolapse) which started occurring about the same time as my other Celiac symptoms & has actually dramatically improved since going gluten-free. I also had fatigue, joint pain, a rosacea-type rash, food sensitivities, etc… which have all improved 90-100% since going gluten-free. Thank god my doctor figured this out!
Dear Dr. Joseph Murray, M.D.,
I question how accurate the screening blood tests for Celiac Disease are. Here’s why:
I was finally diagnosed with Celiac Disease after a long struggle with my health. Major fatigue, severe joint pain, horrible constipation, inability to lose weight, food sensitivities, rashes, sinus and ear infections…the list goes on. I was under the care of a major, highly respected teaching medical facility. I was told after many tests that I had IBS (Irritable Bowel Syndrome) and I should eat more fiber and whole grains. Needless to say, my health did not improve. I kept going back to my doctor and was told that perhaps I should see a therapist and get on anti-anxiety drugs.
I knew I was not crazy! I physically felt horrible!!!
I think “mainstream” medicine (including specialists) miss-diagnosed me because they have the symptoms of Celiac as being diarrhea and weight loss. I had the total opposite. If there’s one thing I’d like to get across to “mainstream” doctors/specialists out there it’s that the lack of those two symptoms should not rule out Celiac Disease as a diagnosis.
Very discouraged with “mainstream” medicine, I was directed to an M.D. that practices something called “Functional Medicine”. After going over my medical records and history she suggested that I do a stool culture. She said that she felt that all of my issues were related to my digestive tract. Wow, I thought, this doctor gets it!!! The constipation that I experienced was so uncomfortable! The results of the stool test came back with a high marker on sensitivity to the protein gluten. I’d never heard of that before. With that result, she wanted to do some blood work that looks for the antibody found in Celiac Disease. The results showed WEAK positive (I had been eating gluten regularly prior to and at the time of the testing). She consulted with a G.I. specialist who suggested I have an endoscopy which is the “gold standard” for diagnosing Celiac Disease.
I had the endoscopy procedure. The results showed SEVERE villious atrophy!!! Diagnosis: Celiac Disease. The G.I. specialist said that he would not have put my screening blood test (which showed WEAK positive) together with the SEVERE biopsy results. This concerns me tremendously! Just how accurate is the blood test? Have you experienced similar results in your practice? Could a person’s blood who has been dealing with Celiac for a long period of time somehow not show the severity or even be false negative? I want to bring this to your attention being that you are an expert on Celiac Disease research.
After my diagnosis, I did a bunch of reading and found out that the disease could be related to genetics. I wanted to find out if I had the genetic marker(s) associated with Celiac Disease. I had the genetic blood test done through my G.I. specialist and the results showed that I have the DQ2 gene and got it from one parent.
With those genetic results, my G.I. specialist recommended that my family members get tested.
My Mother has Type 1 Diabetes, rashes, fatigue, over-weight issues, joint pain, Gout etc.
I sent information with her to have her doctor test her for Celiac. Her doctor’s comment was, “You do not have Celiac Disease.” But she eventually ordered the screening blood test for my Mother which did show a negative result.
My Sister has terrible diarrhea, rashes, fatigue, over-weight issues. She also was tested and the results, negative.
I’m very concerned that they both have Celiac Disease and perhaps the blood test is missing it. Is this possible? (Just a note, I made sure to inform them that they needed to be eating gluten for the test results to be accurate and they both were eating wheat at the time the tests were taken (they are still eating gluten).)
Frustrated, I encouraged my Mother to talk with her doctor about having the genetic blood test done to see if she or my father were the carrier of the gene and perhaps to give her doctor the heads-up to test her on a yearly basis if she was the carrier of the gene. Her doctor told her that the test was not covered by her insurance and that it would be very expensive. No progress.
Without positive results on the blood test, an endoscopy is not advised. I fear that my family members are walking around with, as you say in your video, “a silent killer” and I wanted to ask you about the blood test accuracy. Again, my blood test showed WEAK positive and yet I had SEVERE damage to my small intestine. How can that be??? And what is the best thing I can do to help my ill family members. You said in your video that they should not go on a gluten-free diet before being tested and diagnosed.
Have you published the specific recommended blood tests that one should have to be screened for Celiac Disease? If so, it would be great to know where to find that information. I want to make sure that my family members are getting the proper tests. I’ve been reading about new stool cultures possibly being more accurate than the blood tests? Your expert opinion would be greatly appreciated!
I’m feeling tremendously better on a gluten free diet! So glad I was finally, correctly diagnosed!
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 am trying to find out if I should be tested for celiacs. I have two sisters and our Mother who do have celiacs. I immediatly told my doctor. She said due to the fact that I had bariactric surgery in 2002, I do not need to worry about the disease because I do not use my small intestines anymore. Is this true? I am having some auto immune problems such as lichen planus, and stomach spasms to name a few. Do you know if by having bariatric surgery it would eliminate the worry of eating a gluten free diet? No one seems to know the answer to my questions. I am not sure my doctor knows enough about Celiacs to conclude that bariatric surgery excludes me from the disease. If you cannot answer this, can you direct me to someone who may know if this problem has ever been addressed? I would very much appreciate your help. Thank you very much,
Debra Foster
Dear Dr. Joseph Murray, M.D,
I had a blood test that indicated that I likely have Celiac disease, but after having a biospy taken of it indicated no damage and thus I likely do not have Celiac disease. All of these was confusing and still left me with intestinal issues. So I continued to do research and found a link between Candida, Celiac and my own symptoms. Which lead me to do more research and find your site.
What I am interested in is the idea of factors that have changed from now and the 1950′s. I had assumed that it was a result of lack of testing and diagnosis of the disease. But your research seems to indicate another factor. So I was wondering if it is possible that the overuse of antibiotics has been tested or considered as a possible factor. I question this because since I was a child I was over-prescribed antibiotics for chronic bladder and kidney infections.
Hi,
I hope you can help. My cousin (age 47) has asked me to search the net to help solve a serious problem she is having. She was diagnosed many years ago with celiac disease. She just recently moved and has been under a lot of stress managing her business and the move. Almost over night she became unable to walk (but not paralyzed) and her speech is almost incoherent. So far the doctors have only found B12 and other vitamin deficiency and lesions on her brain. They did a biopsy and so far nothing. They do not know what is wrong with her.
My question is, can celiac disease become so serious that it can cause these problems? Can a B12 deficiency cause these neuro problems? They did give her B12 but not everyday like I have seen some people online have needed. I have read that even is the blood reading go up that it doesn’t mean the B12 has gotten to the brain and shots need to be carried out until improvement???
She had moved to Mexico and we thought she might have a parasite but they ruled that out. Her symptoms seem just like a stroke but they ruled that out plus MS and a host of other diseases. Since moving to Mexico she did complain that is was really difficult to eat properly plus she was doing a lot of traveling because of her business in DC and therefore wasn’t eating properly.
Can CD get this serious to mimic a stroke? The doctors at INOVA Hospital are completely stumped and have now sent her to Johns Hopkins. She doesn’t want them to keep cutting into her brain if they have no clue what?s wrong.
Can you help us????
My mother has been sick for a couple years. I have taken her to many doctors. One found out that she had colitis. Started meds. and continued to have water stool and weight loss. Found another doctor who did a test and biopsy to find out she also has Celiac. Following a strick Gluten free diet and Meds. also being feed through a pick line. She gained weight was getting out of the house. So pick line was taken out. She was great for abut one month. Still following Gluten free diet she has gone back to having water stools. Becoming weak and weight loss again. I don’t know what to do or where to take her. I am once again watching my mother die. Any help at all she is 82 yrs old and she is not ready to die. Neadless to say I not ready to let her go. The doctor has up he meds. but it’s not helping.
Thank You for any help,
Patty
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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.
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So it hasn’t been since the 1990s where celiacs diseased has been noticed and seen as something serious!
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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!
Mary,
Thanks for your comment, we’ll forward this on to Dr. Murray.
I believe there is absolutely a connection to antibiotic use and celiac. I suffered ear infections and was given antibiotics for three years. During this use, I began having a fluttering feeling in my colon area along with constipation. Six year later and I’ve experienced so many symptoms that I thought I had to be dieing. I have now removed Gluten to experience less colon pain. I still have muscle spasms and eczema but I hope they will improve with time.
Do all persons with HLA DQ8/DQ2 produce antibodies to gluten in the diet?
We’re checking on the answer.
No most do not. The celiac specific antibodies are only seen in those with celiac disease who make up only 1/30 of those that carry DQ2.
The risk for DQ8 is even lower maybe 1/ 100
I was initially diagnosed with Celiac Disease and Pernicious Anemia with blood tests at the age of 21. I had been having symptoms of both since I was a small child. Doctors had dismissed my condition as anxiety/depression and attempted to put me on anti-depressants rather than running any actual tests. It wasn’t until I ended up in the hospital nearly dying that one endocrinologist really investigated my condition. Afterwards, I was directed to Enterolab.com to have further non-invasive tests run that confirmed the blood test results and showed my genetic link. I also went to Mayo Clinic for further testing that approved of the Enterlab results and discovered that I have permanent neurological damage from the pernicious anemia.
Since that time, my mother, her siblings and parents have all been confirmed to have celiac disease with these tests at Enterlab. We have been able to trace our genetic link back 3 generations and looking back at my great-grandmother’s health condition it is likely that she had it as well. I come from an Italian/Irish background which seems to be at a higher risk for this disease.
Despite having treatment and being on a strict allergy-free diet for 14 years I have continue to have dysautonomia with chronic irritable bowel. I only eat organic, non-gmo foods from companies that test for gluten. My symptoms are certainly improved, but the end result is that I am homebound due to my condition. Despite my incomplete recovery I urge anyone with symptoms to visit Enerolab.com for information and testing. Also, please consume organic, non-gmo foods. They are good for the environment and your body. These changes in diet have helped my family and cured many relatives suffering from their celiac disease and food related illness.