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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

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I guess I just need to vent. My GI guy called me last week with news that he thinks I have something called Gilberts syndrome and may also have hemochromatosis (iron over load). My other docs office called and won't tell me my lab results on my heart test (predictive for heart attack), and want me to come in this week for echocardiogram (I was already scheduled for one, but they wanted it done sooner after the blood test, so obviously the blood test was abnormal, but they won't say). I am trying not to worry about stuff, and frankly, I am thinking of ditching the docs--they are finding too much wrong with me :angry: . I have been having chest pain for awhile, now I am scared it may really have to do with my heart after all, and I am only 30 years old. I really just want to be well...a friend suggested I go to this homeopath she knows, I may just do that. This process of finding out about celiac disease has been a bumpy road and it has seemingly opened a pandoras box in terms of health issues for me. I know most people feel relieved when they get diagnosed with celiac disease. I wish I could say I was one of them. I just needed to vent.

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Hi Karina,

I'm sorry to hear that you are having other health problems, but please don't give up on the doctors too soon. If there is something seriously wrong you should find out now before it gets worse. There are a lot of advancements in medicine, especially having to do with heart disease, and if there is something wrong that can be fixed you should try and find out.

A naturopath might be able to help, too. But I wouldn't put it first over conventional medicine. Just my opinion though. I hope you are alright.

What is Gilberts syndrome anyhow? I hope it is not very bad. And it is amazing that you have iron overload, when most Celiacs are low on iron!

God bless,

Mariann

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I have heart diesease too! they found it out when they were trying to find out what was wrong with me when it was celiac. i have a five chambered heart but nothing is wrong with it. i actually just had an echo, they're not bad at all. they are actually good because they will tell you if something is wrong with you and that is better than finding out the hard way.

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Marianne,

From what I can tell Gilberts sydrome is considered medically benign. It is a problem with bilirubin, you will have elevated bilirubin levels, but the rest of your liver profile will be normal. You may have jaundice with it, and according to one website I read on it there are certain symtoms that can accompany it. My GI doc, said not to worry about it, but he is more concerned with the iron-overload. Yes, he thought it was weird too, being that I have celiac. It is also a genetic disease. He has set me up for a gene test for it to see if in fact I do have it. I have read that it can cause heart problems, so I am a bit worried about my ticker right now. I just had the echo, so we will see what it shows.

Molly,

Did you have any unusual symtoms that made them do the echo on you? Chest pain, palpitations?

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No, I was having my tonsils out and i hadn't had one in a while and before they did anesthesia they needed to make sure my heart was fine

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Wow - I'm so sorry to hear about your health problems - When it rains, it really pours, huh? It seems like you have more of your share of sickness :(:(:(

I hope that you feel better soon and God bless...

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I wanted to mention that several people on my thyroid group have had iron overload. The treatment is to regulary give blood. Best wishes to Molly for a successful surgery. Hugs, Carol B

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Hi Karina,

I'm Czech, so you'll need to be a little tolerant of my English. Your symptoms seemed to be similar to mine, so I decided to reply.

I too have high iron/bilirubin, but not much, just a bit over the top limit. They seem to be related, when iron is low, bilirubin is low as well. I also have chest pain & palpitations, but there was nothing wrong on my EKG (is it the thing where they put wires on you?). The only thing they found different was quite low blood pressure and a little higher rate. I have been told that heart and lower esophagus share the same nerve, so when you get some reflux, it may seem like a heart problem. Actually, acid lowering drugs helped me a bit. I need to avoid acidic food as well. They tested me a lot for a bug called helicobacter pylori, I had some tests positive, some negative, and when they found celiac panel conclusive, they gave up further testing. I still may have the bug however. I've been gluten-free-CF for 9 months, and still hoping to get better.

Anyhow, I hope your heart will be OK.

MARK

Gluten-free Casein-free since September 03

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Karina -

You and I seem to be on the same path! I was diagnosed with Celiac in late April and I just had my follow-up with the gastro doctor on Thursday - he also mentioned Gilbert's to me since my bilirubin is still elevated - in fact, it's higher than it has been the whole time and this is after having had an ERCP w/sphincterotomy in April (you'd think clearing the bile duct blockage would have made the bilirubin go down instead of up). I also have chest tightness and pains. What bloodwork did they do on you to check that? So far, nobody has even checked that, but I actually forgot to mention it to the gastro dr Thursday (oops). It comes and goes, so if I'm not currently having it, I tend to forget about it. I see my endocrinologist in July, so I am going to ask her a lot of questions - she is actually the one who discovered the Celiac. I have actually been e-mailing with someone who has hemochromatosis, so I will link your post to an e-mail and see if she can answer any questions for you. I was glad to come across your e-mail - I was logging on to post about how darned ANGRY I am about this Celiac and all the extra health problems and reading your e-mail reminds me I am not alone. I'm still really MAD, but it helps knowing somebody understands. I've seen so many rude, uncaring doctors through all this who have told me such stupid things and I'm so sick of hearing "common things are common, rare things are rare." It's their "mantra" and they tend to pigeon-hole your symptoms into being something common and don't look for more and that is how Celiac is being overlooked and we patients are suffering now with multiple diseases because of it. ARGH!!! I already wrote my "angry" post...I suppose I should try to behave in this one!!!

LISA

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Karina -

Just wondering how you are doing - did they say you have Gilbert's? Mine hasn't said anything yet, but thank goodness, my bilirubin did come down a little bit in the last test. I was mistaken about the lady I'm e-mailing having hemochromatosis - it turns out her brother has that. I just found out yesterday that my Mom has it, but they told her she just has to go give blood to keep it under control (although I don't know how often). My friend said that is also what her brother does.

If you get a minute let me know how your heart test went. Good luck

LISA

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Sorry I havn't been aroung for awhile--was busy and actually was trying to stay that way and avoid dwelling on these negative things too much (esp. when I am waiting for test results and can't do anything else in the meantime). Thankyou for all the replies. Mark, have they told you why your bilirubin is high and iron too? Are they not concerned because it is not so high?

Lisa, so sorry to keep you waiting on a response! I am glad your bili came down. Were you jaundiced at all? I have not heard yet on the hemochromotosis--I had a gene test done almost two weeks ago and I am waiting for doc to call--it is my GI and he is always really good about calling me with test results--so he must not have them yet--I will check next week if I do not hear today. He pretty much said I have Gilberts but I will ask him again--he was not concerned about it--said it was nothing to worry about. As for the echocardiogram.....it was completely normal! :D My CRP was a bit elevated indicating I am at increased risk for a heart attack--this is why they did the echo. I have low BP and pretty normal pulse. They are now checking my cholesterol. I am trying to improve my diet--it used to be good and then when I had to go gluten-free, well I sort of went nuts like having gluten-free icecream every night and stuff :rolleyes: . I also need to get back into an exercise routine, more raw foods, less sugar and dairy. These things alone may help that CRP level and it is a healthful way to live. I also think I am going to go to the homeopath I send my daughter to. She has done great things for her and for my friend, so she may be able to give me a constitutional remedy that will help my body get to where it needs to be--well. I will follow up about the cholesterol and the hemochromotosis--although I am hoping after being treated with homeopathy that my levels in everything will improve and I may not even need conventional treatment. I will let you all know how this goes.

God Bless,

Karina

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Hi, Karina -

Glad to hear your echo went well!! And it is good that the Gilbert's won't do any harm. I have not been jaundiced, just had the bilirubin creep up and down. I feel like I'm eating too much meat since going gluten-free. I need to find some protein that isn't chicken or beef because I'm going insane!! I eat eggs sometimes for breakfast. I haven't done too much damage with the sweets, since in recent months, they make my stomach hurt, although I did eat a tiny butterfingers and a tiny milkyway since I was really in the mood for some chocolate and I read they were gluten-free. Hopefully, I won't regret eating them!! I need to get to the health food store and stock up on some other stuff so I won't grab the candy. I'm not familiar with homeopathy - how exactly do they treat you? Let me know if it works!! I had the blood drawn for my girls yesterday, so I'll find out in about 10 days whether they have Celiac or not and if they don't, then I'll find out if they have the gene. Good luck! Talk to you later

LISA

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Karina,

they didn't tell me why my bilirubin/iron is high, instead of this, they were speculating whether being at high altitudes can affect iron levels, but as they found my erythrocytes normal, they couldn't give any conclusion. Next test I got into normal range, so they were not so concerned. They also mentioned Gilberts, and they told me some people have elevated bilirubin all their life, and there is nothing much wrong about it. In the last test I went just on the top limit. The relationship was just my observation, I forgot to mention it to the doc, but I've found that iron is needed to make hemoglobin and hemoglobin is discarded into bilirubin, so this could be a ground for this relationship. Also, my hemoglobin is a little elevated, but still in normal range.

I have chest pains sometimes, but they are not on the right side. Most often, they are in lower left ribs area or in the middle of chest. I can even find a spot which hurts when pushed. My doc said it could be a pulled muscle but I'm sure it's not. The inflamation of the rib cage is far more possible case, but I'm not sure about it either. I did an interesting experience: while I was having the pain, I drank about 2 cups of water, and the pain stopped almost immediately. - It's not always working, but it gives me some relief often.

My cholesterol level was elevated as well, and I hope it's not going to rise any higher. In addition, I have pretty high antibodies to milk proteins, so I need to cut off all diary as well. In fact, it was much harder for me than going gluten-free.

Good luck.

MARK

gluten-free/CF since September 03

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Mark,

my chest pain is mostly left-sided as well and it is possible it is just costochondritis--but I needed to rule out cardiac of course. I know what you mean about the dairy--that would be very hard for me--I know I should probably cut down on it at the least as so many alternative health practitioners do not like dairy and I may have a sensitivity to it and do not know about it.

Lisa,

Homeopathy (from my layman perspective) is treating the whole person with a "remedy" that is made from natural substances (not really herbs). The homeopath spends time with the person, interviewing them, reviewing their medical history, disussing physical and emotional complaints, and then they come up with what is called a constitional remedy for that person--this takes care of everything for the person--they do not take additional homeopathic remedies or allopathic (conventional medicine) remedies for acute needs unless is is absolutely neccessary and usually it is not. For those not on medicines for chronic ailments and for those who can stop drinking coffee completely, they can take just a one time dose (may have to be repeated at some point).

In the case of my daughter, she was just one year old and suffering from chronic ear infections. Conventional medicine wanted to put her on allergy meds and inhalers and discuss tubes for her ears--she was just one! :o I took her to the homeopath, as well as cutting dairy and delaying further vaccines. Well no more ear infections or terrible colds (despite plenty of exposure), or severe allery symptoms. She is free to be her happy healthy little self and it has been well over a year. When sickness goes through our house she often doesn't get it when everyone else will and when she does it is less severe. Homeopathy treats the whole person--strengthening your body so that it will fight off illness and disease on its own--as many believe it was meant to do. My friend was basically cured of her life-long chronic asthma as well as migraines! I was very skeptical at first, but not so much now. ;)

Karina

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Very interesting about the bilirubin!! When I started having GI issues (back 13 years ago), it showed up high in my blood profile. After other blood tests showed my liver was normal, the doc threw out the high bilirubin as a false positive. Why do they do that? Anyway, I'm still trying to find out what's wrong

:unsure:

So.. you have celiac symptoms?

Gretchen

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Karina, thanks a lot for the costochondritis tip. I have done some searching on the web about it and it's possible I may have it as well. It can be cured with ibuprofen, which, as I already know, does work for me. I was a bit woried I may have a pericarditis, but hopefully it's not the case.

Anyway, you bet it was hard to get rid of diary, I'm still craving my favourite stuff. But the numbers tell me a clear message, and unless my antibodies drop down, I'll stay diary free.

Gretchen, did you ask me? I am AGA both negative, tTg IgG positive, IgA negative, caseine IgA positive, IgG high positive. Hope this helps?

MARK

gluten-free/CF since September 03

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About the rib pain, and this isn't much related to GI, but if the pain you are experiencing is in the same spot all of the time and it seems to hurt for a long period of time, then stops... it could be a broken cartilage rib. That's what happened to me.. have 5-7 broken and they'd never show up on the x-ray because they're not bones. Some were just hairlines and some were complete breaks, but they'll never heal and when irritated, just get inflamed (especially when I ate too much) and hurt like a bad bruise for weeks. After about a decade of wondering why they were hurting, they thought I had costochondritis or a gallbladder problem (since they were on my right side)... so, if I ever hear of someone with rib aches I just mention this... just in case. :)

Gretchen

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Gretchen, the pain moves and changes quite often. In addition, deep breathing doesn't increase the pain. I can't remember any event (like hit, fall etc.) which could cause this. So, I don't likely think it is a broken cartilage rib, but thanks anyway. It's interesting how many ideas can people come up with.

MARK

gluten-free/CF since September 03

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RE: Bilirubin levels

I am not a medical professional, but I must say this: If any of you have high bilirubin levels along with a deep pain back ache on right side immediately tell your doctor. The other symptom I'd be concerned about is diarrhea, but with a celiac that would be hard to determine if it was from the celiac or a pancreas problem. Sometimes the pancreas malfunctions and the symptoms are similiar to celiac. At this point, the GI should be doing an ultra sound or a more serious CT scan.

So please don't automatically assume your high blood test levels and/or symptoms are from celiac. My warning is due to a family member who's not celiac, having celiac symptoms, but diagnosed as having IBS and severe stress, who later was found to have a pancreas disease instead.

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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.
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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.

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    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.  
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    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