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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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w8in4dave

Grain Free Diet?

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I was reading this site and it was saying how Grain causes inflammation , Grain and sugar I guess , and some Celiacs go on a Gluten free, Grain free diet. Anyone here grain free? I am actually thinking of going Grain Free. It's kinda towards the bottom half of the article. 

 

Here is the link:

 

http://www.celiac.com/articles/22275/1/Contamination-of-Naturally-Gluten-Free-Grains/Page1.html

 

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I'm considering it too! But I love the full feeling that I get from eating grains. I feel like eating veggies never makes me feel as satisfied as a bowl of veggies AND rice. 

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I am grain free.  Lately I am using nut flours which help give me a full feeling.  I make muffins, pancakes, or wraps with them.  I make wild rice in place of rice.  I guess it isn't a grain.

 

I had withdrawal symptoms when I stopped eating rice, and buckwheat (which isn't a grain, but is used like one).  Recently I tried to take a supplement which contained rice powder, I noticed some swelling.  After I quit taking it, I had yeast withdrawal symptoms.  Yeast may be part of my struggle.  My doctors are hoping that in time my body may settle down a little bit and not be so irritable.

 

One more idea for the full feeling.  Have some butter, oil, or coconut oil with each meal.  Just shy of a tablespoon should help your tummy feel full, up your energy, and keep you fuller longer.  If you worried about that making you fat, I am not and I have been doing it for years.  I don't know how it will go as I am absorbing more.

 

I don't eat sugar either.  I have small quantities of honey.  I have had to up the carbs since avoiding grain.  I am eating a  more fruit and adding a tbsp. of honey to my smoothies.

 

I am feeling more and more satisfied.  Of coarse I can't tell for sure what all has helped as there are so many factors involved.

 

D

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Yes !! Alot of factors ... I just bought a 25 lb bag of Rice!! Pfftttt Maby I can give it to friends. I am not 100% sure I am going to do this. I may quit eating potatoes 1st. I have that sore in my mouth , and it was almost gone. I ate some fried potatoes at lunch and low and behold it started getting sore again. So maby it is the legumes ???? I have more research to do. before I decide... What to do what to do...

I am never to worried about a full feeling, meat seems to give me a full feeling so I really wonder if I can get away with meat veggies and fruits ... 

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I consider myself "grain-lite", I have a small amount of grains once or twice a week (ex. 1/4 rice, coconut muffin). I do feel better eating that way, but I seem to have issues with starches so that could be it for me.

 

BTW, I get sores in my mouth too. They seem to appear when my immune system is acting up, I'm over tired or stressed, or (occasionally) when I'm fighting off a virus. Funnily enough, those are the times when I crave starches/comfort foods... could it be coincidence for you?

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Coconut isn't considered a grain. Is it aggravating ? Or you talking a rice coconut Muffin? My mouth sores have since cleared. It is Lichen Planus. I can feel the lil lines they talk about. But they are even almost gone. I am assuming it is because of lack of vitamins of some sort. I don't know. My gut must be healing if my sore is going away!! No to get this yeast stuff taken care of. toes nails falling off , now my finger nails are getting weird ridges in them ... Ughhh sucks to have all this but at least it can be taken care of! 

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Coconut isn't considered a grain. Is it aggravating ? Or you talking a rice coconut Muffin? My mouth sores have since cleared. It is Lichen Planus. I can feel the lil lines they talk about. But they are even almost gone. I am assuming it is because of lack of vitamins of some sort. I don't know. My gut must be healing if my sore is going away!! No to get this yeast stuff taken care of. toes nails falling off , now my finger nails are getting weird ridges in them ... Ughhh sucks to have all this but at least it can be taken care of! 

Anyone know what the finger ridges show a deficiency of?  I don't.

 

My nutrient levels went down somewhat before they went up.  Hang in there!  Progress is great!

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Vertical nail ridges are fairly common and typically of no concern.  Horizontal nail ridges can indicate an underlying disease.  Horizontal white lines can indicate a nutrient deficiency or problems with the liver. 

 

Colleen

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I am grain free on and off and I have to say that the inflammation I get in my intestines goes away being grain free. I love cooking with coconut, almond and tapioca flours. I use it for "breading" as well like on chicken which I cook in evoo. I highly recommend it if you have chronic inflammation. When I am not grain free I usually eat rice products. And some of those processed gluten-free foods just irritate the heck out of my insides.

 

If you get hungry because your not eating grains, or lack that full feeling, you can eat more protein OR try some protein shakes with fruit. Fruits are considered a carb in the diet world and yes they have sugar, but sugar occurring in nature I think is fine for us.

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We are turning towards the grain free life, just learnings more about it.  All i can say is that a month into it and we both feel better.  Been using coconut oil and mostly all organic meats & veggies.  I found a great book full of paleo recipes and it's been fun.  This morning we had pumpkin pancakes with eggs.  Good stuff and no grains!

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Thanks for all the responses :) it sure feels good to have people just like me to talk to!! Now since I have posted this I have also figured out I am having a problem with corn. I posted a thread about corn. Anyhoo so I am going to try and go Corn free and see what happens. I eat fresh meats and veggies so it shouldn't be too much of a problem for me. Someone posted a link on my corn thread I have got to read up on. But I am thinking one thing at a time! 1st thing was Gluten, 2nd thing corn. We will see. 

The sores in my mouth seem to come and go. When the come they are not as bad, they are gone more than anything. I am not sure if stress is causing anything or if it is corn or grains or anything eles. I consider myself to be sooo new to this all and still learning so much every time I turn around there is more I am learning! So this corn intolerance is the next thing on my list of things to avoid .. 

 

I would like to ask is anyone knows , Is it an intolerance? Or is it hurting me like Gluten? Gluten damages my body! What about corn? I get pain bloating and gas!! Is it also causing damage? 

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Thanks for all the responses :) it sure feels good to have people just like me to talk to!! Now since I have posted this I have also figured out I am having a problem with corn. I posted a thread about corn. Anyhoo so I am going to try and go Corn free and see what happens. I eat fresh meats and veggies so it shouldn't be too much of a problem for me. Someone posted a link on my corn thread I have got to read up on. But I am thinking one thing at a time! 1st thing was Gluten, 2nd thing corn. We will see. 

The sores in my mouth seem to come and go. When the come they are not as bad, they are gone more than anything. I am not sure if stress is causing anything or if it is corn or grains or anything eles. I consider myself to be sooo new to this all and still learning so much every time I turn around there is more I am learning! So this corn intolerance is the next thing on my list of things to avoid .. 

 

I would like to ask is anyone knows , Is it an intolerance? Or is it hurting me like Gluten? Gluten damages my body! What about corn? I get pain bloating and gas!! Is it also causing damage? 

 

Agreed. :) 

 

Lately, I have found myself drawn more and more to the paleo diet, and it really does seem to be helping. It naturally eliminates a lot of the foods that people have intolerances/allergies to, and I have found that it just makes my life so much more simple. So you could try paleo! That will cut the gluten (of course!), corn, etc. Are you dairy free as well? 

 

As I am typing this, I am remembering that this entire thread was originally about grain free diets. Geeze! It's early. I am only on my first cup of coffee.  :rolleyes:

 

Anyway, let us know how it goes, w8in4dave. I'm off to caffeinate myself so that I can speak coherently today.  :D

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Vertical nail ridges are fairly common and typically of no concern.  Horizontal nail ridges can indicate an underlying disease.  Horizontal white lines can indicate a nutrient deficiency or problems with the liver. 

 

Colleen

Actually my liver enzymes are up so this makes alot of sense to me ...... I have gotten results back from my toe nail. I had to have it sent in for results. (Sorry Know it is gross) it is not a fungus or yeast. I have to go see a dermatologist to find out what the problem is.

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Agreed. :)

 

Lately, I have found myself drawn more and more to the paleo diet, and it really does seem to be helping. It naturally eliminates a lot of the foods that people have intolerances/allergies to, and I have found that it just makes my life so much more simple. So you could try paleo! That will cut the gluten (of course!), corn, etc. Are you dairy free as well? 

 

As I am typing this, I am remembering that this entire thread was originally about grain free diets. Geeze! It's early. I am only on my first cup of coffee.  :rolleyes:

 

Anyway, let us know how it goes, w8in4dave. I'm off to caffeinate myself so that I can speak coherently today.  :D

I have not gone grain free altho I have thought about Paleo and grain free I have not done either. I have stopped eating corn or corn by products. Thats kinda hard!! But doable, speaking of being caffeinated I guess I should go and get some myself.

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Actually my liver enzymes are up so this makes alot of sense to me ...... I have gotten results back from my toe nail. I had to have it sent in for results. (Sorry Know it is gross) it is not a fungus or yeast. I have to go to see a dermatologist to find out what the problem is.

 

Well, one more piece of the puzzle, at least you know it's not fungus or yeast.  Keep on top of the Derm guy, they can be dismissive or too general. 

 

Good Luck,

 

Colleen

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I went grain free/Paleo when I had to go low-iodine - it just kind of made sense. It was rough for the first bit. I was craving carbs like crazy (apparently this is normal - our body gets used to burning carbs for fuel and it takes a while for it to switch to burning fat instead). I am now grain-lite - I will eat a little rice or masa harina once or twice a week. If I bake, I use coconut flour, almond/other nut flours, tapioca, arrowroot and potato starch.

 

I feel pretty good without grains. I don't get bloaty after meals, even big meals. My sugar cravings are greatly diminished (though I have also cut out refined sugars so that makes sense). My digestion is great on account of all the vegetables I eat. (I eat MOUNTAINS of veggies daily).

 

Beware when starting Paleo: a lot of people start out just eating tons of meat and nuts. I did this in the beginning and felt just ugh. It is not Atkins, where you eat only meat and fat! You need to include lots of veggies.

 

Sample menu (this is what I ate yesterday):

Breakfast:

red cabbage braised with apples

homemade sausage patties

almond flour biscuit (my adaptation of the bun in the bowl - still a work in progress)

tea with hemp milk

Lunch:

squash soup

shredded chicken

celery sticks with almond butter

Snack:

1/2 avocado with lime juice

Dinner:

homemade beef stew

roasted carrots and parsnips

sauteed kale

big salad

 

So everyone will be a little different - it depends on what your goals are. Those trying to lose weight will want to limit the starches. Those trying to add weight will want to up the healthy fats. I am fairly active and my weight is fine so this amount of food works well for me. I also have found that my weight is much more steady grain free. The more grains I include the quicker my weight tends to creep up. Without grains I rarely step on the scale. If anything I tend to drop weight really quickly when I eat totally Paleo.

 

When I no longer need to eat LI, I will be having dairy again. I miss cheese!

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Patients is a virtue :) Dr apt is Jan 6th. Argggggggggggg!! 

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I went grain free/Paleo when I had to go low-iodine - it just kind of made sense. It was rough for the first bit. I was craving carbs like crazy (apparently this is normal - our body gets used to burning carbs for fuel and it takes a while for it to switch to burning fat instead). I am now grain-lite - I will eat a little rice or masa harina once or twice a week. If I bake, I use coconut flour, almond/other nut flours, tapioca, arrowroot and potato starch.

 

I feel pretty good without grains. I don't get bloaty after meals, even big meals. My sugar cravings are greatly diminished (though I have also cut out refined sugars so that makes sense). My digestion is great on account of all the vegetables I eat. (I eat MOUNTAINS of veggies daily).

 

Beware when starting Paleo: a lot of people start out just eating tons of meat and nuts. I did this in the beginning and felt just ugh. It is not Atkins, where you eat only meat and fat! You need to include lots of veggies.

 

Sample menu (this is what I ate yesterday):

Breakfast:

red cabbage braised with apples

homemade sausage patties

almond flour biscuit (my adaptation of the bun in the bowl - still a work in progress)

tea with hemp milk

Lunch:

squash soup

shredded chicken

celery sticks with almond butter

Snack:

1/2 avocado with lime juice

Dinner:

homemade beef stew

roasted carrots and parsnips

sauteed kale

big salad

 

So everyone will be a little different - it depends on what your goals are. Those trying to lose weight will want to limit the starches. Those trying to add weight will want to up the healthy fats. I am fairly active and my weight is fine so this amount of food works well for me. I also have found that my weight is much more steady grain free. The more grains I include the quicker my weight tends to creep up. Without grains I rarely step on the scale. If anything I tend to drop weight really quickly when I eat totally Paleo.

 

When I no longer need to eat LI, I will be having dairy again. I miss cheese!

Ty for yor post!! Paleo is looking better and better .....

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I have a problem with corn and get similar bloating, but no way of really knowing what is happening in the small intestine.  Would be nice to be able to check some gage to find out.  This gage could say, "Corn is causing me a pain." or "Everything is fine in here!"  My gage would need to tell me a gluten reaction or other reaction also.

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Check out some of the paleo cookbook.  I bought two different ones and have been having sooo much fun making different things (and I have never been into cooking...at all!).   The books I have rely heavily on spices for kick and I have my partner in total awe at some of my creations!   

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I bought my Daughter the Paleo Cook book last year.. I should borrow it ... I know she does pretty good on Paleo But she says it is a pricy diet ... I had a starter paleo book but I don't have a clue where it is...

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My story with grain-free/paleo... I think it *really* depends on the person.  We have tried several different approaches all trying to figure out the best diet for my son.  I went through a lot of them with him because I nursed him for 3 years.  We've also tried some different things since then. 

 

End result, he does very well grain free, so long as he gets lots of squash and sweet potatoes.  Adding in things like rice isn't a problem, but he could happily be largely carnivorous.

 

I feel like *hell* eating that much protein, meat protein in particular.  And if I eat too many nuts (and too many for me is more than about 1/8c a day), I get roaring estrogen dominance problems (already an issue, but nuts have a ton of plant estrogens, and 1/4 c of nuts a day for a month changed my very regular cycle from 30 days to 19.  19!!, and raving emotional/mood swings.  Went back to normal immediately when I went off the nuts, and recurred when I tried again because I'm a scientist and an idiot).  So for me, nut flours aren't a good replacement for grains.  Fats are good, but too much, and I think my fat digestion gets overloaded.  And if I use veggies to fill up all that food space, I still need to be careful about estrogen load.  Bottom line, for me it's a lot easier to have at least some grains, and I feel better eating them.

I am all for people experimenting with diet, because I think the right one can have a really profound effect on quality of life.  But after my own experience, I really resist the idea that any diet is a fit for everyone.

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I wonder if going grain free would help with constipation?  I am already off of eggs, gluten, peanuts and dairy. 

 

Renaye

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Hmmmm I know I kinda have a problem with constipation once in a while so I use Nuts. But if your already eating alot of them... I don't know! 

 

Mamafish,

I thought Rice was a grain. But then I have no clue... Really I don't lol 

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I thought Rice was a grain. But then I have no clue... Really I don't lol 

 

 

It totally is :).  One that makes me feel much better to eat, and seemed optional for my kiddo.  I think it really varies person to person.

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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