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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Dakota01 commented on Scott Adams's article in Winter 2026 Issue
      1

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    2. - JoJo0611 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Awaiting Biopsy results

    3. - cristiana replied to emzie's topic in Related Issues & Disorders
      1

      Stomach hurts with movement

    4. - emzie posted a topic in Related Issues & Disorders
      1

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,455
    • Most Online (within 30 mins)
      7,748

    Suelle
    Newest Member
    Suelle
    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

    • JoJo0611
      I have had my endoscopy this morning with biopsies. My consultant said that it looked like I did have coeliac disease from what he could see. I now have to wait 3 weeks for the biopsy results. Do I continue eating gluten till my follow appointment in three weeks.  
    • cristiana
      Hi @emzie and welcome to the forum. Perhaps could be residual inflammation and bloating that is causing sensitivity in that area.  I was diagnosed with coeliac disease in 2013 and I remember some years ago my sister telling me around that time that she had a lady in her church, also a coeliac, who  had real pain when she turned her torso in a certain direction whilst doing exercises, but otherwise was responding well to the gluten-free diet. As far as I know is still the picture of health. I often end up with pain in various parts of my gut if I eat too much rich food or certain types of fibre (for some reasons walnuts make my gut hurt, and rice cakes!) and and as a rule, the pain usually hangs around for a number of days, maybe up to a week.   When I bend over or turn, I can feel it.  I think this is actually due to my other diagnosis of IBS, for years I thought I had a rumbling appendix but I think it must have just been IBS.  Reading the experiences of other sufferers, it seems quite typical.  Sensitized gut, build up of gas - it stands to reason that the extra pressure of turning can increase the pain. When I am glutened I get a burning, gnawing pain in my stomach on and off for some days - it isn't constant, but it can take up a few hours of the day.  I believe this to be gastritis, but it seems to hurt irrespective of movement.   Anyway, you are doing the right thing to seek a professional opinion, though, so do let us know how you get on.   Meanwhile, might I suggest you drink peppermint tea, or try slices of fresh ginger in hot water? A lot of IBS sufferers say the former is very helpful in relieving cramps, etc, and the latter is very soothing on the stomach. Cristiana
    • emzie
      Hi! One of the usual symptoms I have with a gluten flare up has deviated a bit and I thought I'd search for advice/opinions here. Also to see if anyone goes through similar stuff. Monday all of a sudden I got really bad pain in my stomach (centre, right under the chest, where the duodenum would be located). I ended up having to throw up for 2 hours, my body was trying to get rid of something from all sides and it was just horrible. Since then I havent been nauseous anymore at all, but the pain has stayed and it always worsens the moment i start moving. The more I move the more it hurts, and when i rest longer it seems to dissapear (no movement). I've had this before, but years ago I think around when I first got diagnosed with coeliac, where each time I moved, my stomach would hurt, to the point where I went to the ER because doctors got freaked out. That only lasted 1 night though, and Now it's already wednesday, so 3 days since then, but the pain persists and remains leveled. it doesn't get crazy intense, but it's still uncomfortable to the point I cant really go out because Im afraid itll turn into a giant flare up again. I couldn't think of where I could possibly have been glutened at this bad of a level and why it hasn't passed yet. I went to the GP, and as long as I have no fever and the pain isnt insane then its fine which I havent had yet. Tomorrow im also seeing a gastroenterologist specialized in IBS and coeliac for the first time finally in years, but I thought I'd ask on here anyway because it still hasnt dissapeared. It also hurts when someone presses on it. Maybe it's just really inflamed/irritated. I'm just frustrated because I'm missing out on my uni lectures and I do a sports bachelor, so I can't get behind on stuff & next to that i'm also going to go to the beach with my boyfriend's family this weekend: ( 
    • Flash1970
      Hi. So sorry to hear about your shingles. There is a lidocaine cream that you can get at Walmart that will help numb the pain.  That's what I used for mine. It can't be put near your eyes or in your ears. I hope your doctor gave you valacyclovir which is an antiviral.  It does lessen the symptoms. If it is in your eyes,  see an ophthalmologist.  They have an antiviral eye drop that can be prescribed.  Shingles in the eye could cause blindness.  I was unsure whether you have celiac or not.  If you do,  follow the diet.  I believe that extra stress on your body does affect everything. Shingles can recur. If you start getting the warning signs of nerves tingling,  see the dr and start taking the valacyclovir to prevent a breakout. If I sound technical,  I am a retired pharmacist. 
    • Scott Adams
      You are right to be proactive, as research does indicate that individuals with celiac disease can have a higher predisposition to enamel defects, cavities, and periodontal issues, even with excellent oral hygiene. While many people with celiac successfully undergo orthodontic treatment without complication, your caution is valid. It may be beneficial to seek a consultation with an orthodontist who is familiar with managing patients with autoimmune conditions or who is willing to collaborate with your daughter's gastroenterologist or a periodontist. They can perform a thorough assessment of her current oral health, discuss your specific concerns about recession and decay, and create a tailored hygiene plan. This second opinion could provide a clearer risk-benefit analysis, helping you decide if addressing the cosmetic concern of the lower teeth is worth the potential risks for your daughter, especially if they are not currently affecting function or her confidence. 
×
×
  • 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.