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
13 Comments
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.
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
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
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.
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 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
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