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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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Guest taweavmo3

Celiac Was On The News This Morning!

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Guest taweavmo3

There was a little girl w/celiac who's first communion didn't "count" because it was with a rice wafer rather than wheat. According the the Vatican doctrine, it must be made of wheat. The mother of course said this is absurd, and is petitioning to get that changed.

Poor little girl! When the interviewer asked what would happen if she ate wheat...she said she would get sick and die. I thought that was a little extreme, I hope the poor thing doesn't really think she'll die if she eats wheat. I know I am new to this and all, but I don't think I want to scare Emmie into not consuming wheat.

Anyway, just thought it was cool that celiac was at least mentioned on the Today show, any publicity is good.

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I don't understand what communion has to do with wheat. By that I mean why does the wafer have to be wheat? What is the difference, as long as there are no leavening agents used?

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Here's an article...that issue was raised in......June? But it's recently come to the forefront again: ABC article on it

Plantime...it's Catholic doctrine and the Church is unwilling to break from tradition, if it means being more accomodating to celiac Catholics.

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Guest barbara3675

This issue has been worked over BIGTIME on this board. There are some Catholic parishes that are willing to work with the celiac patient regarding blessing a rice wafer. Some are just not willing to do that because they say that Jesus communed with his deciples on wheat bread and that it must be wheat wafers. We all know what Jesus would have to say about this now, don't we? I feel sorry for celiac patients that are having to choose between their church and their health. As a Lutheran, I take rice crackers snapped in half and everyone on altar guild knows to put one in the plate for me. It will be a long time before the Catholic church settles this matter, though, I am afraid. I just can't imagine making a child feel bad about themselves over such a matter like this.

Barbara

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It's sad that those people have the one way of thinking..I mean Jesus knows the heart of someone who is taking communion and that's what matters...not the ingredients of the wafer.Jesus would not want us to hurt ourselves.

I go to a non denominational church that is similar to baptist and they allow me to bring my own communion and are very understanding.

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O.K., I enter this discussion with a bit of trepidation, but speaking as one who was brought up in the Catholic church and left it many years ago (and to be fair, Christianity altogether) (please, no prayers for my soul), here is something that I thought of as regards this sad situation.

As I recall, in the protestant religions, the wafer is viewed as SYMBOLIC of the body of Christ. But, in Catholicism, it is believed to be TRANSFORMED into the actual body of Jesus Christ. So I ask, why should the initial content of the wafer matter if in the end, it turns into Jesus?

Paula

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As a lapsed Catholic and a bible reader (have read OT & NT cover to cover as I ended up in older years attending a bible-based church) the resolution of this gluten-free host will never come to frutition.

The Catholic Church is slow and plodding when coming to the conclusion that others have reached. Example: Galileo was considered a heretic because he discovered that the earth rotates around the sun, instead of the opposite and for other supposed heresies; Martin Luthe (NOT Martin Luther King.) - church in late 20th century took the "anathema" off him as he professed that Grace/Salvation from God is a gift, not something that could be bought from the Church if you had enough money. They only now realized that Luther was correct and now he's considered a "son" of the church.

So don't keep banging your head against the brick wall. It may not be in our lifetime that they reverse themselves on gluten-free hosts. I suggest that if you are Catholic and feel strongly about this, then write to Rome; go around your Arch Bishop and write directly to Pope. I know Pope won't get to read them; even if he was well, someone would intercept the letters, but the volume alone and the pleas should be recognized.

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Mis spelling above: Martin Luther - years 1483-1546 (also was a Roman Catholic Priest)

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Thanks for the education. Learn something new every day!

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I can't believe that anyone could actually think that Jesus cared which grain was used. But some priests do. My grandmother on my dad's side is a devout Catholic and she cut out this article for me from some religious newspaper since it had Celiac mentioned in it. It was about the girl whose First Communion was invalidated because she used the rice, rather than wheat wafer. I'll quote from the end of the article (oh, by the way, the headline is: Church seeks options for those with celiac disease):

"But giving a gluten-free host, he says, is just playing charades. 'I don't see it as a sign of compassion or care. It's feeding into falsehood. When we offer words like compassion and pastroal concern, we mean them, but it doesn't mean you cn change things. You seek solutions. You provide options., You stand fast with the person who is suffering and encourage them along the way.

'But to those who ask, did Jesus really put emphasis on the material used,' Father Sirianni said, 'the answer is yes.''

I think the last statement (in bold) is the worst...I can't believe he can feel that way. Well, he said "put emphasis." I'd love to ask him, "Would Jesus rather have me poison my body and die?" or "So Jesus wouldn't be satisfied if a Celiac used a rice wafer instead, with the same belief as another?" I apologize if I offend other Catholics, but it just bothers me that they're so steadfast. I, PERSONALLY, am okay not taking Communion...but I am upset for those who aren't okay without it.

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I am rather sick of hearing all these disparaging opinions expressed by non-Catholics about Catholic belief. This is a Catholic matter. We're not in here belittling the belief of other denominations, so leave us be. And when I say Catholic, I mean practicing Catholic, not 'former Catholoc' or 'used to be Catholic' or 'my grandma was a Catholic' or 'I'll pick and choose my beliefs and call myself Catholic'.

It's not up to any priest to decide he will or will not "honor" a host made from invalid matter. The priest was wrong to do this. If the child's mother knew this was wrong, and was trying to join him in an end run around our belief, then she was wrong also. The reason the church invalidated her communion is because it was wrong - the host was not transformed. She did not receive the Body of Christ in her communion.

This is unwelcome news and difficult for all Catholic celiacs, but it is what it is.

I don't know why God made me this way, but He chose to do so, so I choose to obey and work to accept in my heart my situation. He has a reason - His reason and someday I will understand.

It is hurtful to hear one's beliefs insulted and reviled. Please stop!

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I am a life-long, active Catholic. I was dx with celiac 5 months ago. I completely understand the frustration concerning the seeming inflexibility of the Catholic Church regarding wheat-only communion wafers. I would like to share with you my personal experience with this issue.

When I met with my parish priests about receiving communion, they were very compassionate and helpful, even consulting with several religious convents that make low gluten wafers. However, since I attend daily Mass, I did not want to ingest even a small portion of a gluten-free wafer. So I decided to receive only the wine, which according to Church teaching is called transubstantiation and which I believe, is also changed into the Body and Blood of Christ. The substance of both the bread and wine are changed into the real Body, Blood, Soul, and Divinity of Jesus Christ.

In addition to the support of the priests, one of the deacons of my parish researched celiac disease and wrote an essay that was inserted in our weekly bulletin explaining the disease and why I would no longer be receiving communion under both species. This essay not only helped with my initial discomfort of other parisioners asking why I was not receiving the host, but also helped to educate our parish community about celiac disease. Recently, at a fund-raising bake sale, one of the ladies of our parish baked gluten-free chocolate chip cookies!

As you can see, I have been blessed with a loving and supportive Catholic community. I hope and pray that all celiacs who are struggling with this sensitive communion issue will be able to find a respectful resolution as I have.

kschmitz

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I am rather sick of hearing all these disparaging opinions expressed by non-Catholics about Catholic belief. This is a Catholic matter. We're not in here belittling the belief of other denominations, so leave us be. And when I say Catholic, I mean practicing Catholic, not 'former Catholoc' or 'used to be Catholic' or 'my grandma was a Catholic' or 'I'll pick and choose my beliefs and call myself Catholic'.

It's not up to any priest to decide he will or will not "honor" a host made from invalid matter. The priest was wrong to do this. If the child's mother knew this was wrong, and was trying to join him in an end run around our belief, then she was wrong also. The reason the church invalidated her communion is because it was wrong - the host was not transformed. She did not receive the Body of Christ in her communion.

This is unwelcome news and difficult for all Catholic celiacs, but it is what it is.

I don't know why God made me this way, but He chose to do so, so I choose to obey and work to accept in my heart my situation. He has a reason - His reason and someday I will understand.

It is hurtful to hear one's beliefs insulted and reviled. Please stop!

I am Catholic myself...and I go to church, not every week, but often enough to be able to say that I do practice Catholism. I don't take Communion.

I'm not bashing the faith at all...and I guess we can't really blame the priest who made the remark I quoted. He is simply reinforcing what those in authority are saying--and he has no power to change it anyway.

Do you take Communion? Or the low-gluten host? I realize that there is an "alternative" that has been deemed safe--the low-gluten host. But being so strict with this diet, it would be EXTREMELY difficult for me to intentionally ingest gluten--even if the amount is safe. And if we can go 3/4 of the way to a gluten-free host...I don't see why those....20 ppm (or however much is in it) have to be in it at all. And I bet we all get a slight amount of gluten ingestion every day...even if it's under 20 ppm...I'm just scared that if I intentionally ingested more gluten, it might push it over the edge to the point where it damages my intestines.

I realize that it's not the priest's fault for this...it's just that those in authority don't want to break from tradition. And that's nothing against the faith--steadfastness to tradition and ceremony might be what attracts people to Catholism in the first place. I was just saying that not accepting a gluten-free host is about holding to tradition--the way the Communion has been taken for hundreds of years.

I apologize for offending you, though.

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Dear KVOGT,

your unfortunate reaction to some of the remarks made here fully illustrates why I was somewhat apprehensive about weighing in on this sensitive subject. I am responding inasmuch as I am among those who you singled out with some disdain, as a former Catholic. Please know that I was very careful to choose words that expressed my point without sounding critical. The fact that I left the church, and indeed, Christianity as a whole, is not a criticism of anyone's faith. It simply did not suit my personal spiritual needs. You say that the question of a gluten-free host is a Catholic matter; I assert that the basis of every religion and of life itself is compassion, and the people's comments here reflect compassion and concern over a practice that, for Catholic Celiacs (and this is a Celiac discussion group) is causing physical and/or emotional harm...a practice that surely, out of love, could be remedied. Peace be to you.

Paula

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Dear KVOGT:

As a past and present, practicing Catholic, born Catholic, raised Catholic, married Catholic, all my children Catholic, husband teaches in a Catholic school, (does that pass as a "practicing Catholic"?) I can honestly say to you that in all honesty, I most likely will not be a "future" Catholic. My children will continue in the Catholic faith, as my husband will continue to take them every Sunday, but unfortunately I am no longer getting the spirituality out of the Catholic church to fulfill me. Why? Because I have felt more and more increasingly in the past few years that the Catholic church behaves like it is an "exclusive" club that you need to jump through hoops in order to become a member of, rather than an "inclusive" church who is willing to accept me as I am and does not impose restrictions on me just to be "part of them".....

I am not just talking about the celiac issue. I have had several other issues with the church in the last few years (i.e. my children's baptisms). For the first two baptisms, each time we had to go to the "classes" so we would "know what we are doing" (what? like I didn't know already....). But when I had the twin boys, who were preemies, when my husband and I tried to arrange for their baptism, the church insisted on us coming again to the classes, BUT VERY CLEARLY STATED THAT CHILDREN WERE NOT ALLOWED..... When asked how that can happen since I cannot get anyone to babysit four children including twin preemie babies, their response was: "Well, I am sure Pat wouldn't mind babysitting for you." (Pat happens to be my husband's father who is also a deacon at the church). Like I am going to ask a 70 yr old man to babysit four children, including twin preemies!! Also, when we went for the interviews for the baptisms each time, we were put through what I can only describe and the "Spanish Inquisition". And this is a church that we have belonged to since we were kneehigh to grasshoppers!!!

My husband ended up going to the class alone, and he stated that of the 20 couples who were there to get their babies baptised, by the end of the evening, after all the criteria had been laid out on the table, only 3 couples ended up being "worthy" of having their children baptised...... Sad.

Another example was my wedding. There was never any question in my head that my sister, whom I love dearly, would be my matron of honour. Well, I had to fight my way for that one also because, although being Catholic since birth, since she married a Greek Orthodox, she was somewhat "disqualified" and not "worthy" to be my matron of honour in the eyes of the Catholic church.

So, I am sorry if this post has upset anyone, but I am even more sorry that I have to go on a journey to find a church who is more in line with what I require spiritually and emotionally. I just can't "live up to" what the Catholic church requires of me.....

Also, I had assumed that this forum was to have constructive conversation, debates, opinions, etc. I wasn't aware that gave us the right to "attack" someone like I believed you attacked celiac3270. Again, to me that was just another example of the Catholic church's "It's our way or the highway!" celiac3270, as far as I am concerned, you have EVERY RIGHT to post your opinions without fear of reprisal.

Peace.

Karen

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Also, I had assumed that this forum was to have constructive conversation, debates, opinions, etc. I wasn't aware that gave us the right to "attack" someone like I believed you attacked celiac3270. Again, to me that was just another example of the Catholic church's "It's our way or the highway!" celiac3270, as far as I am concerned, you have EVERY RIGHT to post you opinions without fear of reprisal.

Peace.

Karen

Yes celiac3270 you have the right to post that. Not everybody agrees on these debates and I for one do agree with you celiac3270. I am not a Catholic but if I was I would not take communion either because I will not take gluten in any amount. Kvogt-celiac3270 was not attacking anyone or trying to be disrespectful in any way...he was voicing his opinion on what he thinks just like you did.

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Also, forgot to mention that I am in the unfortunate predicament of not feeling comfortable taking the low gluten or OR the wine. You see, I have lived through SARS first hand, and unfortunately it has left its scars.

My grandmother had a massive heart attack three days before the SARS outbreak. She was taken to Grace Hospital (the location that the outbreak started). We were told that she had 24 to 48 hours to live and that most people in their 70's don't survive that massive of a heart attack (Nanny was 92 at the time). Well, we were with her night and day because we didn't want her to die alone. Miraculously, she survived, and is still going strong today (she is now 93), it must be the Irish in her!!!! ;) We were informed while in the hospital that we must go home immediately and stay under quarantine for 20 days as we were in the next room to the people who brought SARS here when we were down in emergency. I had to stay in a room away from my children and family for 20 days, terrified that I was going to die because of this insidious disease. Miracles do occur, and not one member of my immediate family or other members at the hospital for those days, ever came down with SARS. We counted our blessings.

But to this day, it is ALWAYS in the back of my mind about germs, washing my hands disinfecting things, etc. etc. The thought of drinking out of the same cup as 20 other people at church, even though it is wiped with a "hanky" after each one, just sends shivers down my spine. I'm sorry, but to me a "hanky" is not going to wipe away any diseases of the rim of that cup. And one thing I have learned living through SARS, IT CAN HAPPEN! This pandemic that they keep talking about, CAN HAPPEN. This worldwide epidemic of SARS started in North America RIGHT IN MY BACKYARD, I WAS RIGHT THERE FIRST HAND! So, yeah, I am now overly cautious.......

Now my husband teases me and calls me "Howard Hughes" !!! :lol:

Peace

Karen

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To think that Jesus would care if our communion wafer was not wheat goes against everything we are taught about Jesus.

I can see where the priests are coming from, but they are forgetting the basic principles of their faith.

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As a former Catholic I am very dismayed at the approach the church has taken on communion. I inquired with several local Catholic churches about gluten free communion and there response was "No, that is not allowed." My response was "What do you think Jesus would do? Do you think that Jesus would force someone to eat something that would harm them?" When I asked that question they just hung up the phone on me. I simply cannot be a part of an organization that is that intolerant and clueless. It sounds like there are some Catholic churches that get it but not where I live.

Ianm

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Guest BellyTimber

Being more Catholic than any other religion I am content to sit out, I wonder if acceptance of God's gift to us through our guts will help us "commune" with Him in just as good a way as the conventional way. It's the only life God gave me and it's been very strongly shaped by the kind of guts God gave me. It's the only life I'll have. It's awesome.

Michael

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    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