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    The Top Ten Physical Complaints from Celiac Patients


    Jefferson Adams

    Celiac.com 01/16/2015 - Most people with celiac disease suffer from classic symptoms like weight-loss and diarrhea before diagnosis, right? Wrong. In fact, the most common medical issues for people with celiac disease might really surprise you.


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    Photo: CC--Kirian FosterA team of researchers who recently looked at data on 770 celiac patients admitted to S. Orsola-Malpighi Hospital from January 1998 to December 2012, found that even though 80% of people with celiac disease have symptoms other than diarrhea, only 1 in 3 people with celiac disease shows classical malabsorption symptoms.

    Notably, two out of three people with celiac disease show non-classical symptoms. The majority of people have non-gastrointestinal symptoms. In fact, the top ten medical complaints of people with celiac disease are:

    1. Osteopenia/Osteoporosis—a full 52% of patients with celiac disease suffer from osteopenia/osteoporosis.
    2. Anemia—about one in three celiacs (34%) suffer from anemia.
    3. Cryptogenic hypertransaminasemia—nearly one-third (29%) of people with celiac disease, have what is called cryptogenic hypertransaminasemia.
    4. Diarrhea is, in fact, a common gastrointestinal symptom of celiac disease, but believe it or not, only 27% of people with symptomatic celiac disease experienced diarrhea.
    5. Bloating—20% of celiacs complained of bloating prior to diagnosis.
    6. Aphthous stomatitis—18% of people with symptomatic celiac disease had canker sores as one of their symptoms.
    7. Alternating bowel habit—15% of celiacs with symptoms have alternating bowel habit
    8. Constipation—13% of celiacs have constipation as a symptom.
    9. Gastroesophageal reflux disease—About 12% of people with celiac disease suffer from gastroesophageal reflux disease.
    10. Recurrent miscarriages—just over one in ten (12%) people with celiac disease experience recurrent miscarriages

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    What is "Cryptogenic hypertransaminasemia"? I don't understand what I find on the web. Some kind of liver dysfunction?

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    WOW! I had major problems with canker sores for 10 years prior to being diagnosed with celiac. As I look back, now for the last 20 years of being gluten free, I have RARELY had a canker sore! I have never heard there was a connection.

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    I, my daughter and granddaughter have some form of celiac.

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    Guest Jane B.Haugen

    Posted

    Any gluten by accident or choice goes to my joints, especially hips and knees. Add sugar (gmo) and it is early rigor mortis!

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    Guest Susan Copeland

    Posted

    This is the best article I have ever read on non-classical celiac disease. Now if only all of the doctors would read it and take heed. I inherited the gene for celiac disease HLA DQ8. I had been eating gluten free for several years when the GI doctor wanted to biopsy. When he did, it came back negative so he concluded I did not have it even though all of my symptoms said I did. He finally did list celiac disease on my diagnosis based on what I told him. The symptoms described in this article are definitely what I have experienced including the anemia beginning at age 4 that did not respond to oral supplementation of iron or diet high in iron and the osteopenia first and then osteoporosis in my later years. Thank you for this fantastic article.

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    Just adding this to see if anyone else has found this helpful. My daughter was sick passing out for almost two years with stomach pain from celiac. For some reason we don't know why, neither do the doctors but Zophen taken at the beginning of an attack makes the pain

    tolerable and shorter duration. Anyone try this?

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    What exactly is cryptogenic hypertransaminasemia?

    I have googled it, and only get medical garbldey gook back, with no idea what it actually is. Mayo Clinic's web site does not recognize this phrase nor the word hypertransaminasemia.

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    Guest Charlene

    Posted

    I didn't see joint pain mentioned? I suffered with several of the classic symptoms and had DH. But I also had terrible pain in my hands and feet.... after a year of total gluten free living, the pain was gone. But according to my rheumatologist, pain is common.

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    Guest Christina

    Posted

    It nice to have more info on celiac disease. Sometimes you only get bits and pieces on the disease.

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    Guest Ruth Grubbs

    Posted

    If 52% of people with celiac disease have osteopenia or osteoporosis, I wonder how that compares to the general population?

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    WOW! I had major problems with canker sores for 10 years prior to being diagnosed with celiac. As I look back, now for the last 20 years of being gluten free, I have RARELY had a canker sore! I have never heard there was a connection.

    I still get canker sores from oranges, grapefruit and tomatoes.

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    This is the best article I have ever read on non-classical celiac disease. Now if only all of the doctors would read it and take heed. I inherited the gene for celiac disease HLA DQ8. I had been eating gluten free for several years when the GI doctor wanted to biopsy. When he did, it came back negative so he concluded I did not have it even though all of my symptoms said I did. He finally did list celiac disease on my diagnosis based on what I told him. The symptoms described in this article are definitely what I have experienced including the anemia beginning at age 4 that did not respond to oral supplementation of iron or diet high in iron and the osteopenia first and then osteoporosis in my later years. Thank you for this fantastic article.

    Your biopsy was possibly negative because your were eating gluten free for years before the test resulting in a false negative.

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    Good article, but would have liked a definition / explantion of cryptogenic hyper-----.

     

     

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    This is the best article I have ever read on non-classical celiac disease. Now if only all of the doctors would read it and take heed. I inherited the gene for celiac disease HLA DQ8. I had been eating gluten free for several years when the GI doctor wanted to biopsy. When he did, it came back negative so he concluded I did not have it even though all of my symptoms said I did. He finally did list celiac disease on my diagnosis based on what I told him. The symptoms described in this article are definitely what I have experienced including the anemia beginning at age 4 that did not respond to oral supplementation of iron or diet high in iron and the osteopenia first and then osteoporosis in my later years. Thank you for this fantastic article.

    I understand if you are not consuming gluten for about 3 months before a biopsy that celiac won't show up.

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    If 52% of people with celiac disease have osteopenia or osteoporosis, I wonder how that compares to the general population?

    Osteoporosis is common in most GI disease,because of malabsorption of calcium and Vitamin D.The thing that surprised me was miscarriage,which is strongly connected to folate and methylation problems,like MTHFR mutations.

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    For me it was joint pain, major joint pain. My husband and daughter had to help me get up each night and every step I took was painful. Every joint in my body ached. Since being diagnosed with celiac and eating gluten-free I rarely have joint pain. The difference is amazing!

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    Just adding this to see if anyone else has found this helpful. My daughter was sick passing out for almost two years with stomach pain from celiac. For some reason we don't know why, neither do the doctors but Zophen taken at the beginning of an attack makes the pain

    tolerable and shorter duration. Anyone try this?

    I am exactly the same, the triggers for me are lactose and fatty/oily foods.

     

    She may have IBS/other food intolerances IN ADDITION TO celiac disease. I would ask to have her referred to a dietician who specializes in the diagnosis of food intolerances by excluding potential triggers from her diet and bringing them back in phases to test for reactions. Likely suspects include lactose and other FODMAPs. Don't just put her on a low FODMAP diet though as this may well involve her excluding things for no good reason, which can have detrimental health effects.

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    Guest elizabeth Pfeiffer

    Posted

    If you think celiac is confusing, it is, this article was and is one of the best I have read. I am a full blown celiac, have been for nearly 40 years. I was diagnosed with every imaginable disease of the Colon, IBS, digestive problems, Lactose Intolerance which I have, for nearly 20 years. Finally an excellent Gastroenterology Associate, hospitalized me for several days. Many tests were run, including three blood tests, my food intake observed. my "output" observed, etc. Upon release I was told I was a celiac, I hadn't any idea what that was . I was given a strict Gluten Free diet to follow which I still do. Most people had no idea of what celiac or gluten-free meant, or was it contagious, was it cancer, or whatever. Even though I try to never knowingly eat anything w/gluten there are times I know I have. I have experienced most of the above symptoms listed above, sometimes I still have serious bouts of diarrhea. Thank you for this article I hope more get to read it.

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    Guest Martina

    Posted

    I hope this information will reach doctors and dentists! So many of us suffer for decades (and never regain the lost bone mass) just because we're not lucky enough to have GI issues early on. If only dentists had been aware of this in the 70's... The sad thing is that most dentists are not aware of the connection even today.

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    Good article, but would have liked a definition / explantion of cryptogenic hyper-----.

     

    Just click on that term above, and it will give you a definition.

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    Guest sc'Que?

    Posted

    I'm sorry... but as Roger, Ruth, Susan Copeland and others have also (indirectly) pointed out, ISN'T ANEMIA A SYMPTOM OF MALABSORPTION?

     

    And if doctors aren't viewing it that way... uh? Am I missing something?

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    Guest Elizabeth

    Posted

    Just adding this to see if anyone else has found this helpful. My daughter was sick passing out for almost two years with stomach pain from celiac. For some reason we don't know why, neither do the doctors but Zophen taken at the beginning of an attack makes the pain

    tolerable and shorter duration. Anyone try this?

    Add hycosamine phazyme and Pepto Bismal to the Zofran and you can actually get up go to work and even eat. MMJ concentrates help tremendously as well.

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    Any gluten by accident or choice goes to my joints, especially hips and knees. Add sugar (gmo) and it is early rigor mortis!

    I have that too, hate it when it happens, makes everything hurt.

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    Anybody else get Kidney stones because of celiac, I was so mad when it started in me and then to find out it's common for people that have celiac didn't help.

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    Guest Shirley

    Posted

    WOW! I had major problems with canker sores for 10 years prior to being diagnosed with celiac. As I look back, now for the last 20 years of being gluten free, I have RARELY had a canker sore! I have never heard there was a connection.

    Me too. It has been such a blessing to be mostly canker free.

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    Jefferson Adams is a freelance writer living in San Francisco. He has covered Health News for Examiner.com, and provided health and medical content for Sharecare.com. His work has appeared in Antioch Review, Blue Mesa Review, CALIBAN, Hayden's Ferry Review, Huffington Post, the Mississippi Review, and Slate, among others.

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  • Related Articles

    Dr. Rodney Ford M.D.
    This article appeared in the Summer 2007 edition of Celiac.com's Scott-Free Newsletter.
    This question, “how early can you diagnose celiac disease?” is a major concern for both parents and paediatricians.  This is because, like many diseases, celiac disease comes on slowly.  This means that it can take a long time to make the diagnosis.
    Celiac disease can develop slowly?
    Yes, celiac disease can develop very slowly.  The symptoms can be subtle.  It is a progressive disease.  When you are first born, you cannot have celiac disease as you have never been exposed to gluten.  However, if you have the right genetic make up (that is you have the celiac gene) and the right environmental circumstances (eating gluten and getting gut inflammation), then celiac disease can develop.
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    Celiac disease is a condition that is recognised when you get damage to your small bowel tissue.  This damage is triggered by gluten.
    The standard way to detect this tissue damage is by taking a gut biopsy of the small bowel skin (also called the mucosa).  This is done by the technique of upper endoscopy whilst under an anaesthetic.  Tiny fragments of gut tissue are snipped off with a pair of forceps.   This tissue is then sent to a pathology lab.  The lab people (histologists) look down their microscopes at this tissue sample.  They are looking for the gut damage called villous atrophy which is characteristic of disease.
    Early antibody changes – IgG-gliadin
    Importantly, long before the tissue becomes obviously damaged by gluten, your body can begin to react to the gluten in your diet.
    An early sign of a gluten immune reaction is that your body produces antibodies to the gluten in your diet.  This can be seen in a blood test that looks for an antibody called the IgG-gliadin antibody (also known as anti-gliadin-antibody).  Also the IgA-gliadin antibody can develop at this time.
    Even in these early stages of gluten reactions (before the development of any gut damage of celiac disease), you or your child can be feeling unwell.  Many of the symptoms of celiac disease can be recognized in these early stages.  This is before the tissue damage can be seen by the histologist.
    The blood test to look for tissue damage is called the tissue transglutaminase antibody (abbreviated as tTG).
    Early bowel damage cannot be seen
    The next thing to happen is that the tissue in the small bowel gets slightly injured but not enough to be identified by the histologist.  However, such damage can be shown by an electron microscope.  This early damage can also be detected by the presence of the tTG antibody.
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    Is this reasonable?  Experience has changed my mind.  I have come to the conclusion that this is not an appropriate way to deal with these children.  Currently, most medical specialists are adamant. They will not make a diagnosis of celiac disease until the histologist can confirm the typical tissue damage.
    How long can you wait?
    I have given up the “wait and see” approach.  I act.  I carefully scrutinize the symptoms and the blood test results - the gluten antibodies (IgG-gliadin) and tissue damage antibody (tTG) levels.  I may organise an endoscopy test.  If these findings suggest the development of celiac disease, then I make a pre-emptive diagnosis of “early celiac disease”, often before the gut gets badly damaged.  I give these children a trial of a gluten-free diet – I see what their clinical response is.  Pleasingly, most get completely better!  If they get better, then they want to stay gluten-free.
    The problem is that the diagnosis of celiac disease currently hinges on the abnormal appearance of the small bowel.  This damage can take years to develop.  
    The main argument against my approach is that if you do not have a “definite” diagnosis of celiac disease, then you cannot advise a gluten-free diet for life.  In my opinion, the decision to go on a gluten-free diet is not a black and white choice.  For children, I give them the option of a gluten-free diet early in their disease.  Let them feel well.  Let them grow properly.  Later, as an adult, they can challenge their diagnosis and have a formal gluten challenge when they understand the issues.       
    Conclusion – my approach
    As you can see, it is difficult to say how early you can diagnose celiac disease.  It is my practice to carefully assess children regarding their symptoms, their antibody levels, their genetic status and their endoscopy results (if appropriate).
    I do not think it is logical to leave children with significant symptoms waiting for the small bowel damage to eventually occur.  Indeed, I think that these long delays in treatment are inhumane.  Postponement of a gluten-free diet will cause these children to suffer ongoing symptoms.  Worse, they can have growth failure, from which they may not recover.
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    The onset of celiac disease is progressive.  Why wait until the bitter end before going gluten-free? The onset of celiac disease is progressive.  Why wait until the bitter end before going gluten-free?  You can find out a lot more from my webpage: www.doctorgluten.com


    Scott Adams
    I wrote this response below to address a recent New York Times article: Confirming a Diagnosis of Celiac Disease.
    Celiac.com 01/13/2010 - The problem with current diagnosis criteria for celiac disease is that it takes a certain degree of damage to intestinal villi in order to get a formal diagnosis. Since celiac disease with villi damage are just one manifestation of a much broader and more widespread problem--gluten sensitivity--many people who could still develop serious health problems if they continue to eat gluten, will go undiagnosed under the current definition of celiac disease.
    The reality of gluten sensitivity is that around 7 to 12% of the US population test positive for antibodies which are an indicator that their immune system is mounting a response to gliadin, the part of gluten that causes the reaction in those who are sensitive. Many of these people may never get flattened villi, however, many may end up with other conditions that are triggered by gluten exposure in sensitive individuals, for example nerve damage (ataxia), liver problems, diabetes, thyroid issues, etc..
    In the past 10 years the diagnostic criteria for celiac disease have been changed significantly to include various degrees of villi damage (Marsh Criteria), and as a result, more people are now being properly diagnosed. In the next 10 years I predict that blood tests alone will replace the use of all biopsy results to diagnose celiac disease, as they are a far more sensitive indicator of gluten sensitivity. Once this happens we will finally reach a point where those affected can be properly treated and avoid the risk of the many disorders that have been associated with sensitive individuals who eat gluten, some of which are described here.


    Jefferson Adams
    Celiac.com 01/02/2012 - To properly diagnose celiac disease doctors must observe classic histological changes to small bowel mucosa. Success rates can vary among clinics and practitioners. A clinical team recently compared biopsy interpretation between different pathology practice types.
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    The researchers included Carolina Arguelles-Grande, Christina A. Tennyson, Suzanne K. Lewis, Peter H. R. Green, and Govind Bhagat.
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    Journal of Clinical Pathology (2011). doi:10.1136/jclinpath-2011-200372

    Jefferson Adams
    Celiac.com 05/19/2014 - A research team recently examined the effects of prednisolone and a gluten-free diet on mucosal epithelial cell regeneration and apoptosis in celiac disease.
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    Dig Dis Sci. 2012 Dec;57(12):3116-25. doi: 10.1007/s10620-012-2294-1. Epub 2012 Jun 30.

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    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com