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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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anerissara

New At This...lots Of Questions!

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Hi, everyone! I am so glad to have found this place. I have a bunch of questions....

First of all, has anyone here NOT lost a lot of weight before being dx'ed with celiac disease? My MD said that I couldn't have celiac because I've never lost 15 or more pounds for "no reason". But while I've never lost a lot of weight w/o good reason, I also am not overweight (never have been although I was underweight as a teen) and I have just about every other symptom of celiac except for the weight loss. I get a rash that I suspect is dh, with little blisters that leave pits behind and very dry, cracked skin. I've thought for years it was just IBS but in the last year I've just been feeling so crummy, tired all the time and fighting depression etc. etc. I decided to go off gluten anyway and Wow! I felt so much better in just a week's time! I can't believe how much more energy I have, and I even seem to be thinking more clearly! I've been gluten-free for about a month and it's so much better, although I'm still struggling trying to figure out what not to eat and have messed up quite often. I'm trying hard to find hidden gluten and get rid of it but it's not easy!

Some more questions for you guys who've BTDT...

How long does it take for things to improve once you're on the diet? I feel much better but still have diarrhea. It seems to be getting better but it's not all the way better.

How long after you accidentally eat gluten do you notice a problem? How long does the reaction last? And what symptoms happen when you ingest gluten? I was doing pretty well but ate a can of chilli w/o reading the label. Oops! That was Monday, and it seemed to be the worst yestorday and today. Is this normal, or did I get something else that set it off as well?

Just out of curiosity, do any of you have white spots on your fingernails? I had them on just about every nail but the new growth seems not to have them, so maybe it's connected to celiac disease?

Finally, when I had bloating and cramping my mid/upper right tummy felt the worst, sort of where a duadnal (ugh, spelled that entirely wrong) ulser would be. It's gone away in the last month, do you think that would be related?

Sorry about all the questions....I am going to have to find a doctor who knows more about this and can actually help me but it's good to have a place to ask until then! I am really starting to think I'm on the right track with this, everything (except the weight loss) matches up and I feel so much better with out the gluten!

Thanks!

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Guest PastorDave

Hi there. About the sudden weight loss. If I ever lost 15 pounds rapidly, I would have been hospitalized! I am too thin to be loosing that kind of weight. I think one of the biggest problems with Celiac in the US (I mean besides the production and sales of rice bread that looks like plastic) is the fact that it has not been recognized as common in adults until recently. As a result, many doctors don't really have a clue. My wife (a nurse who loves to learn about different diseases, so when I was diagnosed found out as much as she could) wants me to find a new doctor because mine doesn't see a problem with "cheating" on the diet.

Something else my wife has found out about celiac is that the symptoms are not the same with everyone. I was diagnosed early in the progression (it is hereditary and when my Mom was diagnosed my wife encouraged me to be tested) so I don't show many symptoms at all. It is interesting though that now that I am gluten-free I have had worse reactions to gluten then when I ate it all the time. My body is enjoying the fact that I am gluten-free so much that it really complains when I subject it to the dreaded gluten.

Remember that whatever your doctor says, you are not the same as everyone else, and you will not have the same symptoms as everyone else. Go find a doctor that will agree with this and you should have some luck.

One last word of advice, if you haven't been diagnosed yet, find a good doctor and go off the diet for a while. Your body is repairing itself as you are on the diet (if it is indeed celiac) and you might get a bad diagnosis if you are gluten free before the testing is done. I know you don't want to feel bad, but you also want to know for sure if gluten is your problem, and not something else used most often with gluten foods. ;) It is a temptation to diagnose ourselves, but we can't look inside ourselves to see what is going on, but the doctors often can.

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I lost about 10 lbs after I started on a gluten-free regimen. Strangely, during the two years when I was suffering from really bad "D", I did not lose weight. I believe that most of the loss was fat. Re self diagnosis....I didn't use to believe that this was a good idea, but during my two years of " living in the bathroom", I sought help from four doctor specialists, in addition to a GP, and none of them even came close to identifying celiac disease as my problem, and all of them were aware of my symptoms which were classic celiac disease markers. Finally, I spent no more than 30 minutes on the web and fortunately reading sites such as this one, and self diagnosed. After going gluten-free, I started to get immediate relief. The thing that concerns me is the wrong diagnosis that were made and the unnecessary tests and medications that were prescribed, leading to more medications to counter the side effects of medications. Again, I would like to express my thanks to the people that contribute to this site and provide help that is otherwise not available.

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Weight loss only occurs in some people.Some people lose weight some people gain it. I for one lost weight but gained it back after going gluten-free. Some people have celiac and don't even have symptoms.

I usually notice if I have something I shouldn't right away. The 7th day is usually the worst day though and then I start getting better. People have different reactions to gluten though...symptoms and how bad of a reaction depends on the person.

Some people notice they feel better days after they go on the diet...for others it takes longer.

I suggest you find a doctor who specializes or is knowledgable in Celiac disease. Good luck and hope you feel better :D

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There are no set symptoms with celiac. You could feel absolutely normal having never lost or gained anymore weight than what is normal with no gastric symptoms and still have it--this is precisely why 1/133 (or even more than 1/133) have celiac and yet so few know about it. Doctors don't think to test for it, especially when there isn't a problem with the patient.

I have those white spots under my fingernails--I think they're calcium deposits or something--not sure if there's any relation.

Gluten reactions are different for everyone and can vary greatly. Some people take only about 15 minutes to feel sick, but you can take a couple days. Also, sometimes reactions and timing fluctuates based on the product. How long you're sick after consuming gluten is also a personal thing--it can take weeks for some, a few days for another.

Healing time can range dramatically, as well. Though your intestines won't heal in this time, your symptoms can disappear in a few weeks or take over a year. Generally, it takes a few months, I think.

Welcome to the board :)

-celiac3270

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Regarding the white spots on fingernails, I have heard that these are the result of physical trauma to the cuticle during fingernail formation. This "trauma" need not be anything severe, just a little whack of the fingers against a wall for instance, something that you'd just shrug off and think nothing of. I have heard though that they can also be caused by other sorts of "trauma" such as illness or a dietary insufficiency or something like that while the nail is formaing. So in effect, they can probably be caused by lots of different things and it might be hard to find out exactly what caused yours.

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White spots on fingernails do indicate a calcium deficiency. I read about this recently. Plus, my sister has Bartter's Syndrome and has to be careful. She told me something about that years ago.

:D

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Thanks, guys! A calcium deficiency...ugh, I'd definately better find a dr. who knows more about this because the last thing I need is a calcium problem! Yipes!

Thanks.

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Keep in mind it could be a minor one, but taking a calcium chew or tums?? something gluten-free would probably be sufficient. Do you take a gluten-free vitamin? Is it major whiteness or just a little white spot?

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Not major white spots, it's just that every one of my nails has at least one and sometimes more little white spots on them. I do notice that as they are growing there don't seem to be any new spots close to the nail bed, so maybe the gluten-free diet has something to do with it? I should probably find out about the calcum, though, because for a long time I was lactose intolerent and didn't eat milk products. I've tried to be consistant w/ suppliments, but I guess they don't work as well as the real thing. One major plus with the gluten-free diet is that now I seem to be able to tolerate lacose! I still wouldn't drink a glass of milk, but cheese and yoghurt seem to be fine. Yea!

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I would definitley get something if it's on all your fingers. Talk to your dr. unless you know of something you can tolerate. One little spot or even two might not be a biggie...just be safe!!! Call and tell the nurse at your Drs. office and let them make the call about what to do. They'll say whether or not you need to come in or if they can recommend something.

:D

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I didn't lose a lot of weight before my diagnosis. If you check out the NIH's summary of their conference last year, you'll see that they note that extreme or sudden weight loss is NOT present in all cases.

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Hi

I am new here too! I have been diagnosed with celiac disease and been on a gluten-free diet for 1 year. I was heavier before diagnosis also.

Sada

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Yes--I heard it was something to do with calcium, also. I just heard something like...calcium deposits, but I bet you're right. Calcium....ya, I bet I'm lacking in it. I get very little--don't drink milk--used to drink calcium-fortified OJ, but stopped because of the acidity. I'll see what I can do about that. I don't think my nails are getting traumatized, but I bet it's a calcium defficiency :lol:

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Thank you for the referal to the NIH report, I will print that out and take it with me next time I see my MD! I think that he will be more likely to listen to me if I come backed with evidence. I also think I remember being dx'd with DH (by a different doctor) 3 years ago, although celiac disease wasn't mentioned at the time. I am going to call and get records for that too. I'm still not sure I am ready to go back on gluten to get the testing done, the thought just makes me sick...but maybe it would be worth it in the long run? I dunno, I don't plan to ever go back to gluten at this point--even if all testing said negative, I feel so much better that there must be *something* to it!

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Definately...listen to your body if something is right with that then go with it...maybe you need to inform your doctor about celiac instead of him falsely informing you :lol:

Good luck with everything :D

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I was diagnosed recently and have been gluten-free for 2-months. Before that I had severe weight loss (20-pounds in 7-weeks). That was pretty much the clue my doctor needed to test me for celiac disease (positive Endoscopy and positive blood work).

I notice a gluten reaction within a short time after eating. I also get the bloating and the Big "D" as well. I have been feeling better here the past 2-weeks and I hope it is a sign that I am slowly healing :) .

Hang in There & Good Luck!

Cleveland Bob

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  • Who's Online   13 Members, 1 Anonymous, 1,051 Guests (See full list)

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    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
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    admin
    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.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    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
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    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