Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Do Most Cases Of Celiac Begin By Leaky Gut?


alicewa

Recommended Posts

alicewa Contributor

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. :(


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

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.....

ravenwoodglass Mentor

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.

MerrillC1977 Apprentice

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.

IrishHeart Veteran

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:

Open Original Shared Link

StephanieL Enthusiast

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.

Jestgar Rising Star

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



alicewa Contributor

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.

ravenwoodglass Mentor

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.

Skylark Collaborator

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.

IrishHeart Veteran

... 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.

Open Original Shared Link

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

Open Original Shared Link

Skylark Collaborator

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. Open Original Shared Link

domesticactivist Collaborator

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.

domesticactivist Collaborator

Sorry for typos... On my phone

mushroom Proficient

Sorry for typos... On my phone

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

IrishHeart Veteran

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

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

typos are fun

Skylark Collaborator

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

OMG too funny! :lol:

heidi g. Contributor

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.

Silencio Enthusiast

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

mushroom Proficient

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.

Silencio Enthusiast

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    2. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    3. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

    5. - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,955
    • Most Online (within 30 mins)
      7,748

    JodyBledsoe
    Newest Member
    JodyBledsoe
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.