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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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Karina

Abdominal Pressure Points Or Tender Spots?

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I am new to the board. Have seen a GI guy who ordered blood tests that came back suggestive of Celiac. He is doing an endoscopy at end of month. He feels this will just be confirmation that I have celiac disease, as he says I present with many typical symptoms. I am very thin, have diarrhea many times a month, have abdominal bloating, and STRANGE pains around my umbilicus. I will feel this pain and when I reach down to touch it , it hurts REALLY bad! I feel this pretty much daily, but at different times and on and off. Are these types of pain typical?

Karina

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Karina,

Have you mentioned this to your doctor? If not, please call him and tell him! I do not want to scare you, and I am not a doctor, but please mention this to him ASAP.

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Yes, I have told my DR. Also, I am a nurse. I am wondering exactly what you are thinking (I know you are not a DR--I am not holding you accountable for guessing)? I have had these symptoms for a few months, and at first he wanted to do a colonoscopy, but after the celiac panel came back now he wants to do this. He is having me test for occult blood in stools. Are you thinking colon cancer? Whatever you would say, I assure you I have probably already thought of it so don't worry about scaring me--this is why I am getting checked out. But now that you have resonded this way I hope you will share what you are thinking.

Thanks,

Karina

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Hi Karina,

Thanks for mentioning you are a nurse. It makes it a little easier for me to tell you that my fear (based entirely on my non-medical knowledge!) is that it is small bowel lymphoma. Since you are a nurse, and since you have obviously done some research on this, you probably already know of the significant risk increase of this lymphoma to Celiac patients. I'm a little surprised he has not ordered an upper GI series for you. Maybe you should request it.

Please keep me posted.

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Hi,

I failed to mention that when I first got the pain it was around my appendix, and so when I went to my family practice DR> he ordered a CT of my abdomen and pelvis with contrast. That CT came back negative. Now my GI DR. is following up on this celiac thing with an endoscopy, but like I said he originally wanted to do a colonoscopy. His other major concern is/was Crohn's disease. He also told me even if we find out after the endo that I have Celiac he is not certain that it is the cause of all my symptoms. I thinks he means the

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whoops! somehow I hit post before I finished. Anyway I was just saying that we (my DR and me) do not know where this paplable pain is coming from in my abdomen--he said it could be the celiac......

Karina

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Guest gillian502

I've read that pains around the belly button are typical of Celiac, and a floroscopy would rule out small bowel lymphoma if you continue to be symptomatic. I knew if this disease were left untreated some people may have an increased risk of developing lymphoma, but I didn't know that it was a really signifigant risk for us as one of the posts said here...I hope that's not so!

Gillian

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Hi Gillian,

Sorry if I led you astray. It has been awhile since I read the study. Technically, the study found a high incidence of previously undiagnosed Celiac disease in patients with small bowel lymphoma. By extrapolation, I said there is a higher incidence of that lymphoma in Celiac patients. The study was very limited in it's scope and did not go on to determine the incidence of lymphoma in Celiac patients after being on the diet.

If you would like to read the synopsis of the study here is a link:

http://www.cancerpage.com/news/article.asp?id=1320

Following my diagnosis, I had quite a bit of trouble gaining weight. My doctor was very concerned about small bowel lymphoma, so unless he has seen another study I don't know about, me thinks he made the same extrapolation I did! ;)

Hope this clears things up.

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Well, this is a long process--getting diagnosed isn't it? Today was a bad day for me, lots of abdominal pain ALL OVER my belly, but the tender points were extremely painful also. I am fighting the urge to get scared here, and was near tears tonight, not because the pain is so unbearable, but because right now I don't know for sure what is causing it. I don't want to have Celiac, but frankly right now, Celiac is less frightening than some of the other things going through my head.

Karina

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Guest pear_fairy

I have this too! I am undiagnosed as of now and my family doc diagnosed me as IBS but I am leaning towards Celiac myself as so many other symptoms. The tummy tenderness for sure bothers me and most conscience of it at night while laying in bed. We are moving right now (Japan to England) so I have stopped pursuing my doc but as soon as we get settled in the UK I am hunting down a doc that is good with all these digestive problems that can properly diagnose me!

~Steph

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Steph,

Goodluck with your move! Are you originally from the UK? I have seen some posts here from people in the UK and someone here may be helpful in helping you find a good doc. I am sure these boards will be hearing from me for a little while at least as I find my way around all this. I really hope you find out what is causing your pains--I hope you will post your progress!

Karina

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Steph, it's probably better for you in the long run that you are going to the UK. They are much more aware of the disease there than in Japan!

You should have no trouble finding a competent doctor!

Karina, I'm sorry if I have contributed to your fear. I did not mean to upset you - that was why I was originally ambiguous in my post.

Do not worry about being diagnosed with Celiac. Yes, it is overwhelming at first, but you WILL get used to it. Soon it will be second nature. You are absolutely right, there are much worse things than Celiac!

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Guest pear_fairy

Thanks Karina and Dewey,

Nope from the U.S. originally but been in Japan for 6 years now. Husband is military so now that is why we are off to the U.K. Hope i am able to find a great doc there also. Thanks again

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Guest aramgard

Karina, I also had the pain in the right lower abdomen, McBirney's point, which was suspicious of appendicitis for years and years and no one could understand why. Then after I was diagnosed the pain began subsiding and now it is altogether gone after three years of gluten free. Perhaps there is still hope??? Shirley

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I also have pain around my naval, but it's about an inch above the naval and to my right - if I press on the spot then I will be in severe pain for hours - it feels more like an obstruction in my case, but I don't know - I'm baffled by this - I cannot wear pants with a tight waist beause it triggers the pain.

Anyone know why pressure would cause pain in this area for me??? I'm okay as long as nothing touches or presses on it in a certain way...???

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:blink: hello

I am new !

my sister found this forum board and suggested I look into it- i have been having off and on pain on my right lower side for over 12 years-

It has gotten worse over the years and now I have loose stools, feel horrible and full sometimes after eating only a little and have more pain on my side when my stomach is full, bloating, gas, sometimes constipation and when I walk alot I get right sided pain- it seems to flare up if I walk!!

Recently got my gall bladder out (6 months ago) and this hasn't helped with the pain. If I don't go to the bathroom right away I get sharp side pains- already been tested for appendicitus but was negative, also for ovarian cysts, female probs, etc. I am 30 and just married- Want to start a family but not until pain goes away!

Does anyone else have right sided pain or symptoms like mine? If so, were you diagnosed with celiac? I love bread but would stop eating it if it meant no more pain.

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Meenucat -

I know exactly what you mean! My pain is above my belly button and right under where my ribs comes together under my sternum. If a doctor examines me and pushes on it, then it hurts a lot. Do you still have you gallbladder? My pain started when I had some weird gastro attack and then it turned out only 1% of my gallbladder worked. That was removed and I had a lot less pain, but still a weird kind of bloaty feeling there. Then, about 15 months later, another attack and I was told I had a stone in my bile duct. Bloodwork indicated Celiac, so they did an ERCP and swept out the bile duct (of course the stone was suddenly gone by the time they got in there) and did the biopsy at the same time. They cut this little muscle in there to promote a better bile flow and I've had a lot less pressure since then. Of course, I'm also on the gluten-free diet now since the biopsy was positive, so it's hard to tell what helped the pressure. For the most part, the weird "swelling" is still there, but it doesn't seem as sensitive as much.

LISA

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I had my gallbladder out in October (10 days before my wedding!)

Right sided pain still there though and all same symptoms as before- however- I too had a weird "Gastro" attack before I ended up in the ER- felt like a knife in my side and major gas/ diahrrea, could barely move etc. Like a weird "attack"-

So I had hoped the surgery would get rid of chronic pain-but didn't.

My sister works in surgery- she asked one of the surgeons about my complaints and he said to have an ERCP done- or at least an MRI- I asked my GI doc and she said she wanted to try me on a few more meds (!!) before doing more tests (??)

So she put me on Robinul Forte-didn't help-

I am going back next week to her and demanding an MRI-

from researching the internet and going on forums it sounds more and more like a stone is still in there- ALso ended up in the ER (twice in 2 weeks) with extreme "Gall baldder like" attacks- middle of the chest pain which radiated to my back like someone was trying to pull an arrow out of me the wrong way (I never had this type of pain prior to my surgery)

Utterly confused!!

I had asked doc to test me for a wheat allergy about 2 months ago- she said one test was + but one was neg. -- I falied to ask her more details but will now that I know more about all this-

I am considering buying a test from enterlab- have you done this?

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No, I have not ordered a test yet from Enterolab, but I am most likely going to do that soon. You may want to consider having an Endoscopic Ultrasound. In this test, they go in through your mouth and then are able to ultrasound the bile duct to see if there are any stones in there. My GI did that prior to the ERCP since with ERCP there is a risk of developing pancreatitis. The ultrasound showed the small stone, so I thought that was my problem and they'd go whip it out and then I'd be fine. Needless to say, I was bummed that has not been the case. The only thing is, I guess you have to know whether they're going to treat you or do it in 2 stages. I had 2 procedures since one did the ultrasound and another did the ERCP. I've also read that you should make sure you have someone with a lot of experience do the ERCP because of the risks. Today, I have had the recurrence of pain under my right rib cage and pale stools. It doesn't make sense to have done all this stuff and still be having problems! I have also just learned that there is a genetic test for Celiac. You're supposed to ask for the HLAeq2 and HLAdq8 tests (I don't know which letters are supposed to be capitalized and which are not). I am just not 100% certain I have Celiac and so I am going to pursue having this test done. It may just be that I am in denial, but, as you well know, when you have procedures done that are supposed to "cure" you and they don't, you get a little wary of any subsequent diagnosis. Let me know how things work out for you! I'll be on the lookout for your username.

LISA

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thanks for the reply-

I have been reading more about enterolab- I checked the internet high and low for negative info and found none so I felt comfortable and ordered the $349 test- it tests for Celiac disease/genetic/ and milk allergy too. I'll let you know how it goes-

I go to GI doc this Tuesday and will find out more info on the test she did on me before- (I asked her a long time ago to run a wheat allergy test (blood)- had it done and all she said was "One part was positive and one was negative" and basically the part that was positive doesn't mean anything (Ok?)

So I blew it off and went back to trying meds for IBS (Zelnorm, Nulev) but they didn't help -so I'm back to square one. Now that I'm learning more about this i am going to pay more attention!

Let me know how you are feeling- Sorry to hear the pain is coming back-mine is there about 80% of the time..and my diahrrea is getting worse.

The ERCP test sounds a little scary- Have you heard if an MRI works too to see if a stone is present?

That would be my luck too-have it down and have no change

I am so sick of being poked and proded (I have no veins practically!-usually takes 2, 3 sometimes 4 times to find one!)

Sorry I sound so negative- this has been going on for years and am losing patience!

Good luck and let me know how you're feeling!!

-VegasVic

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Guest Nita

Hi Meenucat: Sorry to read about your pain. I am experiencing the same kind of pain all over my abdomen and I nearly fell off my chair when I read that you can't wear tight pants!! I haven't been able to wear a proper size for years and thought I was the only person in the world with that problem. They always have to be at least one size too large and I can't stand elastic waistbands.

The pressure from the belt triggers the pain and it will last all day. I haven't been diagnosed with celiac yet but am going on that assumption and have been gluten-free for 3 months with positive results. Good luck to you. Nita

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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
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    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)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    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