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      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Do Most Cases Of Celiac Begin By Leaky Gut?
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Do most cases of celiac begin by a leaky gut? I've heard that the gut leaks, wheat proteins get into the bloodstream and then the body attacks them but I don't know how it goes from there.

Also if I avoid gluten and keep my gut in really really good condition for 10-20years is it likely that I'd outgrow it? I find the diet daunting but manageable. My family don't understand how such a healthy food like wheat rye and barley is harmful. :(

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How it starts is all speculation - no one really knows for sure.

As for healthy grains? I don't think so. There's nothing in wheat, barley or rye that your body needs, they are just cheap fillers.....

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Just my opinion but I would say it is the celiac that leads to the leaky gut not the other way around. Celiac does require a trigger for many of us and any illness or severe stress can be that trigger. If you are celiac then no you can't go back to eating gluten after it heals as the gluten will just damage the intestines and bring the leaky gut back.

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There's nothing in wheat, barley or rye that your body needs, they are just cheap fillers.....

Not to be argumentative, but I don't think this statement is completely true. There are vitamins and minerals (and of course calories, carbohydrates, proteins and fats) in wheat, barley and rye that the body can certainly utilize and even needs....however, it's pretty easy to get those same vitamins and minerals etc. from other sources, too. So, while it's not wholly accurate to say there's "nothing" in them that the body needs, it would be wholly accurate to say that we can certainly live without these grains without any negative consequnces whatsoever.

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Just my humble two cents....there are many people who feel that "healing a leaky gut" will allow a person with Celiac to consume gluten once more. You will read this many times on the internet or even on this site.

However, the truth is there is no medical or scientific evidence (that I have found anyway) to support the assertion that people "outgrow Celiac Disease" by healing their leaking guts, waiting a few years and then, chowing down on wheat and being just "fine". None.

Don't you think that if there was any evidence this has occurred that it would be front page news? Celiacs everywhere would rejoice!

Yet, those of us who continually answer the question "If I heal my leaky gut, can I have gluten again?" with a resounding "NO!"... feel bad because your hopes are dashed. Sorry. :(

The way Celiac "works" is---reintroduce gluten and you initiate the autoimmune response all over again.

Can someone with a "leaky gut" who does NOT have Celiac disease consume gluten again after healing the gut? Not sure. Does gluten make you feel lousy? Then, there is you answer. Also, what caused the intestinal permeability to begin with? THAT needs to be addressed.

Here is what Daniel Leffler, MD, MA, Director of Clinical Research at The Celiac Center at Beth Israel Deaconess Medical Center in Boston, has to say about leaky gut and the association with Celiac:

"It is not at all clear whether leaky gut is a cause of illness, a complication of illness or a just a result of illness. For example, in celiac disease, we do not know whether a problem with tight junctions leads to the development of celiac disease and possibly other autoimmune disorders (cause of illness), occurs due to celiac disease and then causes other medical problems (complication of illness), or occurs secondary to celiac disease inflammation possibly worsening symptoms but otherwise not of primary concern.

What role does leaky gut play in celiac disease?

Although not entirely clear, it is most likely that tight junctions in celiac disease are damaged secondary to the general intestinal inflammation. Once damaged, they may allow fluid to leak out worsening diarrhea and abdominal symptoms. It is also theorized that in some patients an initial injury to the tight junctions from an infection might allow enough gluten in to cause celiac disease in the first place.

Do all persons with celiac disease by definition have leaky gut?

All patients with active celiac disease will have some degree of leaky gut.

Among persons with celiac disease, does strict adherence to a gluten-free diet improve leaky gut?

Yes, this should return tight junctions nearly to normal.

Are persons with leaky gut, including those with celiac disease more prone to develop food allergies and sensitivities?

This is possible and reasonable to suggest but has not been proven at this time.

Do the proteins gluten and casein promote the development of leaky gut?

There is no evidence that these proteins promote disease outside of individuals with celiac disease or allergies to these proteins.

The entire article is here:

http://www.diet.com/dietblogs/read_blog.php?title=Gluten-Free:+The+Truth+About+%27Leaky+Gut%27&blid=13035

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I believe Dr. Fassano says that a leaky gut is a requirement to "get" active Celiac. That was my understanding in a presentation by him I saw last April. That you can not have Celiac without a leaky guy.

*My* thoughts are that you have something that opens the gut (for my DS I believe it was antibiotics) and that causes the gluten to permeate and cause "active" Celiac. Again, just my ideas.

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Not to be argumentative, but I don't think this statement is completely true. There are vitamins and minerals (and of course calories, carbohydrates, proteins and fats) in wheat, barley and rye that the body can certainly utilize and even needs....however, it's pretty easy to get those same vitamins and minerals etc. from other sources, too. So, while it's not wholly accurate to say there's "nothing" in them that the body needs, it would be wholly accurate to say that we can certainly live without these grains without any negative consequnces whatsoever.

Yes, you said it much better. There is nothing in those grains that you can't get from somewhere else.

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Oh dear! Perhaps I should stay away from dairy then too (to help avoid onset of T1 diabetes)? I didn't realise I would still have a leaky gut.

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Oh dear! Perhaps I should stay away from dairy then too (to help avoid onset of T1 diabetes)? I didn't realise I would still have a leaky gut.

Many of us need to avoid dairy until we heal because we have trouble digesting it. After healing lots of us are able to add it back into our diets.

I don't know of any relationship between type 1 diabetes and dairy consumption. While our chances of developing another autoimmune disease is there once we are diagnosed with one autoimmune disease that doesn't always happen. Adult onset Type 1 diabetes is fairly rare, although it can happen. Unless your doctor has told you that you are heading toward diabetes I wouldn't worry about it. If you do have elevated blood sugars and A1C then try to go with more protein, veggies and fruits and less carbs.

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Do most cases of celiac begin by a leaky gut? I've heard that the gut leaks, wheat proteins get into the bloodstream and then the body attacks them but I don't know how it goes from there.

Also if I avoid gluten and keep my gut in really really good condition for 10-20years is it likely that I'd outgrow it? I find the diet daunting but manageable. My family don't understand how such a healthy food like wheat rye and barley is harmful. :(

Yes, that's the most recent idea. And no, I'm not going to cite references because I've read so many in the past few days it would be tantamount to writing a review article. (I'm in the midst of writing two scientific articles for work and the thought of citing more literature is enough to make me whimper!) The idea is that a leaky gut from dysbiosis or too much zonulin sets up a person for celiac. Once things are out-of-whack, certain bacteria like Campylobacter or Spirochetes can provide an immunological adjuvant effect that triggers celiac disase. Sometimes an enterovirus kicks off the process by termporarily damaging the villi and causing TTG to be released to where it can interact with gliadin and DQ2 or DQ8. There are almost certainly other triggers, which are not completely understood. Casomorphin and gliadorphin are another leaky gut problem. They are immunologically active and when they get into the bloodstream from a dysfunctional gut, it's starting to be understood that they can help prime the immune system for autoimmunity. Early feeding of cow's milk, gluten, and other protein foods before an infant has a fully developed intestinal mucosa is thought to be involved in the development of Type 1 diabetes autoimmunity. The opiate effects of casomorphin and gliadorphin may be involved in that process too.

The doctor who invented the GAPS diet claims she has seen some people with gluten intolerance and even celiac disease able to eat sourdough again, where most of the gluten is fermented. (She has not published any peer-reviewed articles to document her assertion so I am naturally skeptical.)

The problem is that healing the gut and establishing a normal bacterial population after decades of damage and dysbiosis is not a trivial task. You speak of "keeping your gut in really good condition" but what, exactly, does that mean? Absence of villous atrophy is not enough, as many folks on the board can tell you. It clearly involves re-establishment of "normal" microflora but we don't even know what "normal" is. There is also the question of whether some celiacs have abnormal zonulin expression or other genetic issues with gut permeability and will always have a gut that leaks various peptides through to the bloodstream. What is pretty clear is that simply eating gluten-free is not likely to correct the underlying problems that lead to altered intestinal permeability in the first place.

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... you can not have Celiac without a leaky guy.

:lol:

Stephanie, I know this is just a typo, but I must be feeling silly today and found it amusing....hope you don't mind. I giggled, so thanks! ;)

Yes... and here is a link to Dr. Fasano discussing leaky gut, Zonulin and the use of probiotics to heal the gut.

http://www.(Company Name Removed - They Spammed This Forum and are Banned)/gluten-free-society-blog/dr-fasano-on-leaky-gut-syndrome-and-gluten-sensitivity/

and his article in Scientific American, if anyone feels like reading... :)

http://www.scientificamerican.com/article.cfm?id=celiac-disease-insights

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I just read the GAPS diet book and it was sooooooo informative. I would recommend it to anyone wanting to learn more about how digestion works. It's not cheap but it's the best $$ I've spent in a long time. http://gapsdiet.com/

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We also are big on GAPS (been on diet since february) and the book is well worth reading.

I do think it's important to note that dr natasha campbell mcbride is coming at it from a different starting point (healing her son's autism) rather than starting at celiac.

Wehave gotten so much out of the concept of healing leaky gut/gut dysbiosis through a grain free, probiotic heavy diet, bit one thing I have NOT gotten from it is that healing will make it ok for a celiac person to reintroduce gluten.

She does tall about reintroducing grains slowly, moderately, and in fermented forms AFTER at least 2 years on the diet and only in the absence of symptoms.

This recommendation didn't seem to me to be specifically for celiac people.

As for the cause of celiac, seems the jury is out biut my understanding is there are various forms of gluten intolerance, and that celiac is autoimmune in that rather than the body attacking the gliadin, (which does happen as well, through different antibodies) it attacks itself. The villi get attacked by the immune system. In that case it seems to me that celiac could be a primary cause of leaky gut. As the gut gets more damaged, it develops more problems with digesting other foods, contributing further to candida overgrowth and other guy dysbiosis. I wouldn't want to reintroduce the primary cause of damage after healin it.

Incidentally, for folks interested in the gaps diet I havesummarised the first 5 stages of the diet on the blog linked from my profile. More coming soon.

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Sorry for typos... On my phone

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Sorry for typos... On my phone

That's all right - I think we have all seen guy dysbiosis :lol:

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That's all right - I think we have all seen guy dysbiosis :lol:

and a leaky guy :lol: :lol: :lol:

typos are fun

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That's all right - I think we have all seen guy dysbiosis :lol:

OMG too funny! :lol:

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A couple people I've talked to have told me that gluten intolerance can be caused by leaky gut and leaky gut can be caused from gluten. it makes better sense being caused from gluten. but then i really thought about it and if you picture an inflamed intestine and you gave it gluten (which hangs around in your gut so it takes longer to digest) and your gut is not absorbing it right due to its inflamed status, is it not possible to not handle gluten? just like you can't handle dairy but once your gut heals I've known some of you to be able to consume dairy once again. these are just theories and its really amusing how some of you get so worked up about them. you continue to think in the box. i enjoy living outside the box. i just believe that anything is possible. when i seen my uncle in a hospital bed from brain cancer and he's dying, and i have the doctors telling me he's going to live for 6 weeks. then out of NOWHERE, 2 days later, the cancer is untraceable in his body. vanished. i believe in miracles and i believe in being positive. maybe all my research is wrong and I've wasted my time but i enjoy trying to help people live comfortably with this disease. Alot of people don't take to well to it. as i did not at the beginning either.

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Guys can you explain "leaky gut"? Do you mean bleeding?

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Briefly (and very simply) your small intestine is held together by "tight junctions" which let through only fullly digested particles of food into the blood stream for our nourishment. Celiac disease causes these junctions to loosen up and let through larger particles (not fully digested) which our bodies in an autoimmune response then form antibodies to.and attack as foreign invaders like bacteria and viruses. Thus you have a leaky gut.

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I see, thanks for the reply. Learning more and more every day.

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