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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.