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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Hi everyone, this is my first post. Every time I do a search on celiac, the most helpful responses seem to be this website/forum, so I figured I would sign up.

 

I am recently diagnosed with a wheat allergy. I've dealth with years of gastrointestinal distress. I went to a few GIs in the last two years. One called my problems IBS without running any tests and sent me out the door.  Another doctor did a colonoscopy, which came back negative, and also chalked up my symptoms to IBS.  I've dealth with alternating diarrhea, constipation., gas, bloating, and a number of other non-GI related symptoms - asthma, finger swelling, hives, runny nose, nauseau.  My symptoms seem to come and go every few years but it's back and I've decided I'm not willing to deal with this anymore. My gen practicioner found the wheat allergy, and I decided to make an appointment with a GI on my own to further investigate. Seems a lot of my symptoms could point to a potential celiac or gluten sensitivity issue.

 

I am pending the results of a celiac genetic test.My doctor said it would be the test of choice since I've already been gluten-free for a few weeks (since my wheat allergy diagnosis). I do have a few questions:

 

1. Doctor's assistant wanted me to come in to review my results of the genetic test, saying it was a complicated result, based on percentages, and it better to review with the doctor in person.  Is this legit? I know the doctor ran a celiac profile - would this also test of antibodies, or just genetic testing? Does anyone have an idea of what I can expect once I go in. I can't wait to hear the results. As crazy as it sounds, I want a positive result so I can just work on getting myself better again.

 

2. On a somewhat related topic, I figured I woudl ask ... how do you all deal with the anxiety of going out in public, when there's always a chance of the big d? I'm in constant fear of public D, to the point where I sometimes cancel plans because I am too embarassed. I don't go all the time, but it's enough where there's a chance it could happen, and I'd rather not deal with it. I know my friends won't judge me, but regardless, I am embarassed to go to the bathroom multiple times, esp in public. I'm afraid strangers will judge me, or that i won't get to a bathroom in time.

 

thanks in advance! I'm looking forward to getting you know you all more here

 

~Ami

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I know very little - like you, I came here to post before I got my test results.  Like you, I share many of your symptoms.

 

Until you see the doctor, you're going to be worked up over what may or may not be celiac. I was the same, wanting answers NOW. Having the genes doesn't mean you are positive for celiac, but that celiac can't be ruled out.  The gold standard celiac diagnosis is positive antibodies and positive endoscopy with pathology testing of the small intestine biopsies, or having HD, the skin condition, which indicates celiac.

 

I also know what you mean about public D because the urgent explosive D would often happen to me at work during and after lunch, and it took a while for me to make the connection to what I was eating, and often it was wheat/gluten.

 

Certainly, someone more knowledgeable than I is going to answer your post with better/more informed information.  What I want to add tho is that whatever the results of your tests, gluten is a villain, that I do not doubt.  I am negative in blood and scoped biopsies for celiac, but I chose to eliminate gluten anyhow "as an experiment."   3 weeks in, I have had D only 2x, and am less constipated and having more normal movements.  The same could possibly happen for you by eliminating gluten.  BUT DON'T ELIMINATE IT until you are done testing.  In the meantime, I would advise you to recall the foods you ate when the urgent D occurred, and when out make it a point to not eat those items, or not eat altogether when out.  If you don't put something in during those situations, nothing can come out near immediately. Of course, I'm assuming a causal relationship between food and D, which is how it was for me.

 

Don't sweat getting the results; I know you are anxious, but you are not alone. Soon enough, you will have some answers.

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Hi Ami and Chicksinger,

Welcome to the forum!  

 

Ami- I'm a bit confused by your post.  When you say you were diagnosed with a wheat allergy, was that by an allergist (a skin test)? And if you have been avoiding wheat, the main source of gluten, what exactly have you been eating that is giving you all of these problems currently?  A lot of malt, barley, or rye?  Maybe you've become more sensitive to small amounts having taken out the larger sources?  If your "wheat allergy" was not a skin test, is it possible that you may simply be a celiac?  It is possible to have both a wheat allergy and to be celiac.  They are different things.  But I am just curious if the label was correct.

 

The genetic testing I received was very clear when I received it at home.  But I had already had a positive endo biopsy and was positive for antibodies, so it was expected.  My doc simply said that I carried one of the genes associated with celiac and didn't explain it any further than that.  It can get quite complicated, based on other posts I've seen.  But I'm not sure we need to know anything more than positive or negative.  Someone chime in if I'm off base...  The celiac panel is a test for antibodies.  It is separate from the genetic testing.  Maybe the doc wants to see you because you might not be eating enough gluten for the celiac panel to read as a positive?

 

I'm afraid I can't help you much with the anxiety over the bathroom.  I experience C when glutened.  You guys with D would just laugh and laugh at those of us who pray from a BM as if we were praying for rain after a drought! I would even do a dance if that helped!! 

 

Chicksinger- I'm assuming that you're a chick who sings!  If that assumption is correct, have you found that your reaction to gluten effected your voice? 

 

Shellie

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Hi Ami and Chicksinger,

Welcome to the forum!  

 

Ami- I'm a bit confused by your post.  When you say you were diagnosed with a wheat allergy, was that by an allergist (a skin test)? And if you have been avoiding wheat, the main source of gluten, what exactly have you been eating that is giving you all of these problems currently?  A lot of malt, barley, or rye?  Maybe you've become more sensitive to small amounts having taken out the larger sources?  If your "wheat allergy" was not a skin test, is it possible that you may simply be a celiac?  It is possible to have both a wheat allergy and to be celiac.  They are different things.  But I am just curious if the label was correct.

 

The genetic testing I received was very clear when I received it at home.  But I had already had a positive endo biopsy and was positive for antibodies, so it was expected.  My doc simply said that I carried one of the genes associated with celiac and didn't explain it any further than that.  It can get quite complicated, based on other posts I've seen.  But I'm not sure we need to know anything more than positive or negative.  Someone chime in if I'm off base...  The celiac panel is a test for antibodies.  It is separate from the genetic testing.  Maybe the doc wants to see you because you might not be eating enough gluten for the celiac panel to read as a positive?

 

I'm afraid I can't help you much with the anxiety over the bathroom.  I experience C when glutened.  You guys with D would just laugh and laugh at those of us who pray from a BM as if we were praying for rain after a drought! I would even do a dance if that helped!! 

 

Chicksinger- I'm assuming that you're a chick who sings!  If that assumption is correct, have you found that your reaction to gluten effected your voice? 

 

Shellie

Hi Shellie,

 

I went to the doctor for a routine check-up, mentioned my stomach symptoms, and she did a blood allergy panel. As far as I could tell, the blood test did not test for celiacs, but it did test for common food and environmental allergies. This was about two weeks ago. The results showed a wheat allergy, so I've given up wheat. I basically decided at the same time to cut out gluten entirely to see how it affected me.  Week 1 I had one D. Week 2 I had another really bad bout of it, but I suspect food poisoning (bad shrimp!). My bowel movements seemed to be improving until the bad shrimp incident.  In between week 1 and week 2, I had horrible cramps and my husband, in trying to do whatever he could do, took me to the ER, where they did a CAT scan that only indicated gastritis. Blood tests there showed a slightly elevated white blood cell count. They wanted a stool sample, but I was unable to provide one.

 

The GI I met with was about a week ago. I've since had the genetic testing, the results of which were sent to her office. I go in two days to discuss with her the results and next steps.

 

I suspect I may have celiac and the wheat allergy.  I do seem to be less symptomatic in regards to hives and my nasal allergies. Based on what I've read, I need to give my intestines a bit longer to heal before I can tell if I am gluten insensitive or not. If I don't feel better in a month - do you think that long enough to determine it might not be working for me, and maybe something else is the culprit? 

 

I hope this doctor knows her s$&% and can get to the bottom of this. I think the first time I went to a GI was ten years ago!

 

Side note, I apologize for my HORRIBLE spelling errors in the first post! I was so anxious to post, I didn't even spell check. Ugh, I'm a mess!

 

Ami

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My son was diagnosed with Celiac by blood test and endoscopy.  I just wanted to let you know that the genetic test will not confirm whether or not you have celiac.  My son's genetic test indicated he had a LOW probability of having it, leading his first doctor to determine that he did not have a problem with gluten.  Luckily, we didn't stop there and continued looking.

 

I had a positive blood test for celiac and that was enough for me.

 

Keep a diary of all your symptoms . . . sometimes it is hard to tell that you are improving.  For me, I just used a calendar and every week, I had less and lees to note.  After about a month of being gluten free, I maybe had one symptom every two or three weeks.  Three years later, I STILL have anxiety about bathroom issues, even though I no longer have the issues.  I guess if you worry about something for years and years, it is a hard habit to break.

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I'm not a huge fan of the genetic tests. They basically tell you if you are in the group of people (around 30% of the population) which is more likely to get celiac but a negative test doesn't mean you can't get it. We have board members who had negative DQ2 & 8 tests yet they had positive tests for celiac disease.... Doesn't seem to help much in my opinion.

 

If you are worried that genetically you are at risk of developing celiac disease, you could always look at your family history. Does your family have a history of autoimmune problems like celiac disease, thyroiditid, diabetes (T1) RA, lupus or things like that? If so, you're at risk. I have celiac disease on both sides of my family, thyroid problems are very common and have a cousin with RA; plus I already had one AI problem decades ago so once I heard of celiac disease, I knew me and my kids were at risk.

 

You might want to request celiac disease tests immediately. Some people  have higher auto-antibody levels that linger for weeks, months, or even a year (in the tTG IgA test). Ask for these tests and get them done as fast as you can - if possible:

  • tTG IgA and tTG IgG - these are the most common tests and the ones that seem to stay high longer
  • DGP IgA and DGP IgG - great new tests that are good at detecting early celiac disease, but they tend to become negave fairly quickly
  • EMA IgA -  shows advanced damage and will normalize faster than tTG tests
  • total serum IgA - a control test
  • AGA IgA and AGA IgG - older and less reliable tests that aren't used as often now; thought to work for some with non-celiac gluten intolerance (NCGI)

I can't offer advice on the big D. I had the opposite problem and bloating. Give your symptoms a few months to normalize. Some symptoms improve quickly but others can take months or years to get better with the gluten-free diet.

 

Best wishes.

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Hi Ami and Chicksinger,

Welcome to the forum!  

 

.......

 

Chicksinger- I'm assuming that you're a chick who sings!  If that assumption is correct, have you found that your reaction to gluten effected your voice? 

 

Shellie

 LOL Shellie - I am an old lady that now sings occasional karaoke with my grown daughter. Back in the late 70s, early 80s, I sang with a few local bands in local clubs in New Jersey and had a hoot and hollering good time, tho we never got famous :(

 

Gluten doesn't seem to affect the voice, lol, though I have a geographic/fissured tongue that I'm hoping going gluten free will heal.

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Hpefully your GI doctor is well versed in celiac diagnosis (as they should be these days). They should order a panel that includes a tTG IgA and total IgA at the very least. tTG IgA is a pretty solid test for Celiac and the new DGP test is at least as good, if not better than the tTG IgA and EMA testing can be helpfull as well. 

 

Genetic testing is almost useless in that all it can do is show a high probability that you don't have Celiac Disease but it isn't even 100% for that and if it is positive id really doesn't even mean thata you have Celiac at all. So, it is more or less a waste of time.

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    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
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    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
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    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
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    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
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    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center