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

Is Gf Really Enough? What About Leaky Gut Syndrome


Guest katzmeow21

Recommended Posts

Guest katzmeow21

I was diagnosed just a little over a week ago. Went gluten-free immediately.

Finding more to eat than I expected. I am trying to keep it simple with lots of vegetables, low glycemic fruit and small amounts of meat and rice as the only grain for a while.

If it comes in a box or a can i think I will try to hold off for a while as I am hoping the nutrition will take better without all the sugars and fats and other things we find in too many boxes and cans etc.... which don't really feed our bodies and still can weaken our immune systems especially when we are already down.

and I just want to share my thoughts on it as I feel it now.

I had been a major sugar binger and junk food eater for many years and although I really never took Nsaids or antibiotics I was diagnosed with "leaky gut syndrome" What happens in this condition is instead of our intestinal walls only allowing nutrients to pass through into our system it becomes to porous and allows foreign proteins to leak out into the system causing antibodies against these foreign proteins. I know "leaky gut" sounds disgusting and people laugh when they hear it mentioned because they think its some kind of joke. Actually I have come to find out it is real and oddly enough it seems to be becoming a real common finding in people with autoimmune disorders. It is thought to be a trigger in many cases of RA, MS, parkingsons, diabetes etc... Although "leaky gut" was a holistic type thing for years and mainstream MD's did not believe it they are now looking at it very closely and validating it also.

I think it is crucial to find out if you have it or not if you have celiac disease

I have been reading a lot of messages on these boards in the past week and notice a lot of people who think they are eatin gluten-free and still not getting better etc. and I just wonder how many of you have had other food allergy testing done by blood for IGG and IGA reactions. We see dairy as a big allergy but I think that there can be so many other allergies to simple things like...simple otherwise healthy foods. like I had huge reactions to like celery, tomato, carrot, asparagus.....this is stuff you might never suspect and trying to do the eliminating each one and bringing it back in to the diet to see if it is the culprit can be a long and very trying process and if you are already suffering a lot the last thing you need is this extra baggage to try and figure out on your own. The price I paid for the following tests was not much considering it brought about my diagnosis of celiac disease and also all my present food allergies and the cause (leaky gut). Amazing that all these years of symptoms (im 50 and have had undiagnosed symptoms of celiac disease for a very long time) and the following tests were not only the lead to the diagnosis but also a firmer foundation for what MY personal specific celiac disease gluten-free diet should be for now. Once the leaky gut heals I will be able to reintroduce most of the foods (not the Gluten containing ones ever , of course). There are supplements like L-glutamine, DGL, enzymes and a diet with no sugar, coffee and allergenic foods for a while till it heals.

Finding an openminded doctor who will work both in a holistic and allopathic manner is the key.

This is how my diagnosis unfolded (after having chased it for years to no avail I did indeed find a doctor who was openminded

I recently had the following tests before being diagnosed with celiac. First was a CDSA (stool samples that are checked for a multitude of things) . It was discovered I had some severe dysbiosis meaning poor gut flora etc... the second test was food allergy testing through IGG and IGA blood testing for over 90 foods. It came back with so many food allergies that both my doctor and I thought the results were incorrect. As it turns out the lab suggested I be tested for leaky gut syndrome. Thirdly a test to see if I have leaky gut syndrome . I did. (the way this test is done is to drink a solution with lactulose/mannitol both of which are not absorbed by the body and should show up in the urine.

All of these tests were done by Great Smokies Diagnostics and may or may not be covered by your insurance.

It was after the confirmation of these tests and my long list of symptoms that this doctor decided to do the anitbody testing which came back positive. But I believe that if I had only had the antibody testing first without the other tests I would not be as far ahead in knowing what my specific diet needs are to start out gluten-free

I believe the testing valuable to me and hope valuable for your moving forward to wellness also :)

mary jane


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



Celiac.com Sponsor (A8-M):



Corrine Rookie

Hi Mary Janae,

My daughter was diagnosed in 2001 and at the same time my dr ordered allergy testing. She has major allergies to the birch/alder family. This includes the apple family, plum family, parsley family, potato, hazelnut, walnut, and almonds. Raw foods are more apt to cause a reaction than cooked foods, I was told but not with Hannah. I finally took the step of eliminating all these foods even though they were cookedas she still wasn't gaining the proper weight and was still feeling unwell. She has carrots and celery occasionally and they are always cooked. She can have dairy but not on a regular basis. She does alright on yukon gold potates but not on russet. It has been a long road and I'm sure we're not at the end yet. But I agree that gluten free is not enough for some. Oh, also she doesn't tolerate vitamins. Believe it or not she is very healthy.

skbird Contributor
She has major allergies to the birch/alder family.  This includes the apple family, plum family, parsley family, potato, hazelnut, walnut, and almonds. 

She does alright on yukon gold potates but not on russet. 

<{POST_SNAPBACK}>

Hi Corrine - I'm curious about this as I have not resolved all my food problems - what is the connection between potatoes and the birch/alder family? I cannot eat any nightshade/solanacea food (potatoes, tomatoes, peppers, eggplant, kava kava, tobacco) but didn't know there was a connection with birch or alder. Or is your daughter also simply intolerant to potatoes, in addition to those two families?

Just curious, would help me to figure more of this out. I know petunias are part of the nightshade family - never liked even being around them, instinctive or something, I guess...

Stephanie

Guest katzmeow21
Hi Mary Janae,

My daughter was diagnosed in 2001 and at the same time my dr ordered allergy testing.  She has major allergies to the birch/alder family.  This includes the apple family, plum family, parsley family, potato, hazelnut, walnut, and almonds.  Raw foods are more apt to cause a reaction than cooked foods, I was told but not with Hannah.  I finally took the step of eliminating all these foods even though they were cookedas she still wasn't gaining the proper weight and was still feeling unwell.  She has carrots and celery occasionally and they are always cooked.  She can have dairy but not on a regular basis.  She does alright on yukon gold potates but not on russet.  It has been a long road and I'm sure we're not at the end yet.  But I agree that gluten free is not enough for some.  Oh, also she doesn't tolerate vitamins.  Believe it or not she is very healthy.

<{POST_SNAPBACK}>

Just wondering what kind of symptoms she is getting from taking the vitamins?

mary jane

Misa Rookie

Hi Mary Jane

I used to take very small doses of L-glutamine, but stopped when I read on the internet it's a potential neurotoxin. However, reading your post was a reminder to perhaps start supplementing with it again. It really could be essential to villi healing. Found an informative link yesterday while doing some more research: Open Original Shared Link

Misa :)

skbird Contributor

Wow, one day after posting that I was curious about the birch - potato connection, I was sent an article which actually mentions this. This is an interesting article about food sensitvity and allergy.

Open Original Shared Link

Stephanie

skbird Contributor

Interesting list of botanical families of foods. I have been reading now about Oral Allergy Syndrome - and that these are fruits and veggies that cause oral itching, etc, but if the foods are cooked they are usually neutralized. Also when they hit your stomach the acids break them down. I am wondering if leaky gut is a problem then these foods proteins can get into the system and cause further allergic reactions than just oral symptoms?

Open Original Shared Link

Stephanie


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



Celiac.com Sponsor (A8-M):



jenvan Collaborator

Hey Steph-

I instantly thought of you when I got home tonight and saw my new issue of Living Without. There is an article in this issue entitled "No more nightshades." It is recipes to replace spaghetti sauce, mexican dip, etc. Can you get a hold of one? If not I could send you a copy if you are interested...

Guest katzmeow21
Interesting list of botanical families of foods. I have been reading now about Oral Allergy Syndrome - and that these are fruits and veggies that cause oral itching, etc, but if the foods are cooked they are usually neutralized. Also when they hit your stomach the acids break them down. I am wondering if leaky gut is a problem then these foods proteins can get into the system and cause further allergic reactions than just oral symptoms?

Open Original Shared Link

Stephanie

<{POST_SNAPBACK}>

It would make sense to me that if it causes an instant reaction orally its really telling you to back off.

... and when you think about how saliva creates some of the enzymes necessary to digest that food in the stomach... more food for thought and all the more reason to get allergy testing by bloodwork for the antibody reaction IGG and IGA

Guest katzmeow21
Hi Mary Jane

I used to take very small doses of L-glutamine, but stopped when I read on the internet it's a potential neurotoxin. However, reading your post was a reminder to perhaps start supplementing with it again. It really could be essential to villi healing. Found an informative link yesterday while doing some more research: Open Original Shared Link

Misa  :)

<{POST_SNAPBACK}>

Did you read it reacted as a neurotoxin in people with autoimmune disorders. I have read that too. I know I read about people with MS and how they definately should avoid it as it creates exitotoxins because of improper breakdown and storage in the brain of glutamine to glutaminase(or something) B) and can actually bring on an exacerbation of symptoms. I also read to help protect or lessen the symptoms to take 500mg curcumin 3x day and helps to stop the inflammatory process. Curcumin comes from turmeric and I think it definately is a good thing for us celiac disease'ers. I will look at thorne.com and read the article but I would assume they are going to say it is great because for the larger majority it does heal leaky gut better than anything.

mary jane

skbird Contributor

Hi Jen - is that Living Without article online? I may have seen a similar one. I have noticed three articles recently on the web about nightshades, I wonder if awareness about intolerance of them is finally coming out?

Mary Jane - I take turmeric, 900mg a day (well, not the last week for some reason) and it seems to help with various things, including joint pain. When I have a cold or congestion, I also take it, it cleans things out for sure. Good stuff!

Stephanie

Bette Explorer
Mary Jane - I take turmeric, 900mg a day (well, not the last week for some reason) and it seems to help with various things, including joint pain. When I have a cold or congestion, I also take it, it cleans things out for sure. Good stuff!

Stephanie

Hey Stepanie,

I would like to try the tumeric for the joint pain, do you thing it would help chronic sinusitis? What brands do you take? and do you have to get it at the help food store?

Bette

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.