Leaky gut & gluten & gut pathogens... HELP!

Hello all. I need help. (sorry for my long story, I have trouble making things short)

So here's the thing... in the summer, I started feeling very "off".. in particular very extreme sleepiness in my head. I guess you could call it brain fog.

I didn't feel like I had one foot in the grave or anything, but it was certainly annoying and bothersome.

At the time I happened to be starting a functional medicine course for my career, in which part of it was doing functional lab tests on myself. Well, I found out a lot of my hormones were off, so I tightened up my diet a bit and used a bunch of the recommended supplements and I definitely have felt better.

I recently went further and did a stool gut test, and while I'm not that surprised, I showed pretty high markers for intestinal permeability (aka leaky gut), and also somewhat elevated antibodies to gluten. As well as parasites, bacteria, yeast, etc.

So, I didn't think the gluten antibodies seemed that high but then yesterday I had a consultation with a fellow (much more experienced) practitioner, and how she interpreted the whole thing was that I better go on a strict gluten free diet, probably for life. So the marker was not celiac per se (she suggested I get tested for it), but I guess I have confirmed some kind of sensitivity. According to the test. And gluten contributes to the leaky gut. So they say. So it's gotta go, and it's gotta be strict, as if I was celiac, she said. Because allegedly even the tiniest exposure re-ignites the antibodies and they stay in your system for 3 to 6 months.

But basically, I've been crying for a whole day and in denial. I really, really don't want it to be true.

Not eating gluten is one thing, but do you realize how people with celiac have to live? (my heart feels you, celiacs). Seems to me a miserable existence with extreme paranoia as even the tracest bit of gluten cross contamination can make you sick (and gluten is everywhere)... can't kiss your husband if he's eaten bread, can't use the same dishes, can't travel, basically can't eat at restaurants, can't ever go to anyone's house for dinner ever again unless you bring your own food. you can never have a true holiday ever again (because to me it's not really a holiday if I have to worry about cooking and grocery shopping).

Sure I can do it for 6 months. Or a year. But for the rest of my life????? She said it like it was just no big f'n deal. Yeah right.

I have eaten very strict before out of fear (I used to have bad acne). I was miserable. I am all for healthy eating, but when you're prone to being a control freak, a strict, can't ever mess it up diet for the rest of your life feels like a prison sentence.

It's just not really something I want to undertake lightly. But on the other hand, leaky gut is the root cause of auto-immune disorders. I don't want an auto-immune disorder. So I don't want to just dismiss this.

The jury here seems to be out here on whether auto-immune or leaky gut or parasites or this realm of stuff is TMS or not.

I want so bad for it to be TMS.

I am here because I had RSI for a year and a half. I was into Sarno but I didn't fully believe it. I was too scared of the establishment. The one where they tell you you'll end up disabled if you don't sit perfectly all the time.

It got to the point where things got bad, and I felt a weight of the world as I buckled down to never ever relax with my laptop on the coach ever again. I was not happy about this at all, but I felt it had to be done and was very anxious about it. I actually was thinking that I was using the TMS theory as an excuse to be lazy and in denial about my need to be better ergonomically.

Turned out in the end, it really was RSI all along and I dodged a very anxiety inducing bullet.

I was talked off the cliff, thanks to the lovely people in this forum.

The parallels seem similar...................

Here I am about to plunge into a strict diet that I know will make me feel paranoid and limited. I definitely don't want to do it, but I am afraid to not do it because I fear the consequences, and I'm concerned that I'm just in denial and looking for the "easy" way out with TMS.

I want to do what's best for my health. But also my sanity.

But unlike my RSI, I have actual lab tests for this. Plus there isn't as much conviction on this forum for this kind of thing being TMS (compared to RSI). That's a lot for my belief to contend with.

Where does TMS end and "actually things medically wrong with you" begin????

HALP!!

 

Hi there,

I'm glad to know that you were able to heal your RSI using TMS healing techniques.

I had the leaky gut/bacteria/parasites diagnosis a couple of years ago. I took the supplements prescribed by the naturopathic doctor and I suppose that cleared up because I started feeling better and didn't have the stomach/digestive problems I had before the diagnosis. I never went back for retesting, though. Because I have had so many other TMS symptoms, when I learned about TMS earlier this year, I went back in my head and wondered if the gut problems were indeed TMS. I am saying they were, just because tension and anxiety can create changes in the body chemistry (as I understand it, at least).

If something was *caused* by TMS, that doesn't preclude testing positive for something like gut bacteria. Stressful conditions would theoretically create a body chemistry that would make a welcoming environment for the bugs.

I've read that many people have noticed reduction or elimination of food sensitivities or allergies after TMS healing; I've noticed some improvement in this area as I continue to work on my healing.

If you're comfortable treating this as a TMS equivalent, then that's what will work for you. I was told never to eat wheat, dairy, blah blah blah. I do and for the most part have no problems. Still working this out!

 

(FYI: I was writing this as Cricket posted her excellent reply)

Dear Tracy,

I'm sorry that you're so tied up in this vicious cycle of doubt. I'm going to tell you how I changed my mind, and maybe some of it will resonate for you.

I was fully, 100% on board with Dr. Sarno as soon as I finished reading The Divided Mind in 2011. A lot of my symptoms disappeared. Others I had to work on, by doing the SEP, reading and practicing the anti-anxiety advice of Claire Weekes (Hope & Help For Your Nerves), and becoming overall much more mindful of the negative fear messages that my primitive survival brain was constantly bombarding me with (because that is its job).

But it was the brilliant Dr. Gabor Mate who had the most profound effect on my relationship with my body and my health - both physical and mental. In his book When The Body Says No - The Stress-Disease Connection, he totally convinced me, through explanations of things like our endocrine and immune systems, that the stress of emotional repression CAN create real physiological changes in our bodies, which can go on to create chronic, and sometimes life-threatening conditions. The rest of the medical world sees these conditions, names them, and then tries to treat the condition and the symptoms, without ever addressing the underlying cause. And that cause, according to Dr. Mate, is the repression of frightening negative emotions. Just as Dr. Sarno also says.

If you accept Dr. Mate's premise, then it's not at all surprising that you've got lab results pointing to some kind of condition. And if you accept Dr. Mate's premise, you will want to address that condition with mind-body awareness and mindfulness, and let your body heal itself by giving it a break from the stress hormones that YOU are allowing your brain to create.

The fact that you believe that you have to go on the life-or-death celiac version of a gluten-free diet is, IMHO, ridiculous. Does it perhaps indicate that you suffer regularly from anxiety? And that perhaps you are a perfectionist? LOL - those are the two best indicators of TMS!

If it was me, I would reject all of this gluten sensitivity "leaky gut" crap which IMHO is just the latest in a long line of food and health fads. It might work for a while - that's the placebo effect. The placebo effect is very powerful, but it actually only works in the long run if the person is aware that they are using it as a tool for self-healing. It's a pretty good tool, but in the end, you also MUST address the underlying emotional repression.

Check it out: When The Body Says No - The Stress-Disease Connection. Dr. Gabor Mate, MD (Canada). He's a wonderful writer, and an incredibly compassionate human being. He also has many many videos online, but I comprehend better by reading.

Good luck,

~Jan

 

Thanks for your replies ladies, I really appreciate it! I will definitely check out the Gabor Mate book.

The fact that you believe that you have to go on the life-or-death celiac version of a gluten-free diet is, IMHO, ridiculous. Does it perhaps indicate that you suffer regularly from anxiety? And that perhaps you are a perfectionist? LOL - those are the two best indicators of TMS!

Lol!

Oh definitely those are both me. I am a worrier and a perfectionist. I mean it's confirmed I have had TMS.... so yeah, that is saying something.

Which is also why I have realized that trying to do such a strict diet is not a good idea, and I never would have chose to do that for myself.

That's why I am so upset because it was the practitioner (and indeed the whole association of practitioners) that have determined that according to the science it is necessary for the diet to be 100% no-contaminate gluten free if you are shown to have anti-bodies to gluten (no such as thing as a "low gluten" diet, they say, it must be "zero gluten") . Yes it seems ridiculous to me too, but I am trying to reconcile this with the fact that that is actually what those with celiac disease have to do...... if they eat the tracest amount of gluten, they get violently sick for days and damage their intestines. So if that's the reality for them, I guess it's not that crazy of an idea.

Which is why I am getting hung up here! And worrying that they are right!

If it was me, I would reject all of this gluten sensitivity "leaky gut" crap which IMHO is just the latest in a long line of food and health fads. It might work for a while - that's the placebo effect. The placebo effect is very powerful, but it actually only works in the long run if the person is aware that they are using it as a tool for self-healing. It's a pretty good tool, but in the end, you also MUST address the underlying emotional repression.


Leaky gut... I do believe it's actually a real thing, it's documented all over scientific medical studies, it's just that it's called "intestinal permeability" instead. If you do get a gut bug (like traveler's diarrhea), the protein zonulin opens up the junctions between the cells to flood it and flush it out. (which is what was shown on my test... I have high zonulin levels)

Now what causes the gut to become chronically "leaky" (in which all the stuff starts leaking in the other way and creates immune reactions)... well that's where I think we're up for debate here. Is it really the gluten and the gut bugs? Or could it potentially be the repressed emotions and stress is the bigger factor??

Obviously I am a believer now when it comes to mind-body-pain healing, but really wish there were more TMS leaky gut success stories. I really appreciate your replies and I'll get onto Gabor Mate's book right away. Thanks!

 

Everyone these days, which includes virtually all traditional medical practitioners, accepts that stress leads to poor health - and in particular, that stress lowers our immune response and opens us up to infection from whatever source.

Did you know that a healthy immune system is constantly destroying pre-cancerous cells?

The goal is to keep your immune system working at its best.

The only difference in outlook that we have here, is that we go beyond ordinary everyday stress, and examine the deeper stress of emotional repression. Dr. Mate describes what this is, perfectly.

Have you done the SEP on our main wiki?

 

You need to let go of that need. It means that you are still looking outside yourself for recovery.

Back when Dr. Sarno was doing his work, back pain was THE symptom, but these days it's been completely overshadowed by too many other conditions - including the rise in auto-immune conditions. Dr. Mate will tell you all about those.

 

Great, look forward to reading his book!!! Thank you so much!!

 

My diagnosis of the past 2 years is IBS with constipation. It replaced back pain, and is in many ways preferable. I am working on some projects related to organizing people around harm reduction therapies and I foresee some changes in my career throughout my 60s. I am pretty sure the IBS will abate as I gain confidence.
I am also spending two weeks home alone because my husband is visiting his parents out of the country---and I am finding it pleasant to be alone. Psychologically, it's getting better all the time.
Gabor Mate is great, also about the field of substance use.

 

@JanAtheCPA Thanks, as always, for your complete and valuable replies. I am ordering the Gabor Mate book right now.

 

Just wanna jump here to say I had horrible abdominal pain and brain fog for over a year, then "cured it" by going gluten free from 2009-early 2017. When I resolved my chronic sciatic pain using Sarno/Alan Gordon approaches I turned to the gluten thing. I starting adding it my diet then got a blood test for celiac which was negative and now I eat gluten without trouble.
I guess I really needed to focus on something relatively easy like avoiding gluten instead of something way scarier, my emotions, back then...but damn pizza is so good these days!
It was TMS.

 

I agree with Plum, you are looking for solutions elsewhere, not in yourself. And I am very suspicious about the diagnosis you’ve got. I don’t think it is a recognized test, and leaky gut is just another syndrome with very speculative features. Traditional medicine focuses nowadays very much on gut bacteria and shows that we need a lot and a variety of them. I wouldn’t be astonished if the whole leaky gut stuff will show to be falsified.
I can get a bit angry when alternative practitioners push patients into absurd diets. By the way: people with celiac disease are absolutely able to have a fairly normal life, they just have to avoid gluten. They can travel etc. , but the idea of not being able to kiss your your husband because he ate bread is ridiculous. Sorry, I am being so blank here.

I think you are driven by fear right now and the alternative (or functional) practicioners are fueling this fear. And then you end up catastrophizing about the rest of your life.

If you are afraid of celiac disease, then I would suggest to get a proper testing, not alternative testing. By the way, in desperation I went some years ago to an alternative practitioner who prescribed me huge amounts of vitamin A on the background of a diagnosis with a pendulum. There are all kind of alternative diagnostics available, also gluten tests that show gluten sensitivity for almost all people.

I also tried he bladder friendly diet because I thought I might have interstitial cystitis. And I also excluded gluten for some months. The only positive effect was that I lost weight. My pain level was totally independent from what I ate. Needless to say that I became more and more afraid, panicking over the food I ate, keeping a pain and food diary, becoming more and more desperate that I couldn’t find any correlation between food and pain level.

Since I stopped all this and thinking psychologically I doing much better, I have long periods were I am absolutely pain free.

Sending you energy and calmness!

 

Excellent JanAtheCPA! THANK YOU for the validation that the latest gluten/dairy/everything good fad is just that! It's the latest "thing" for alternative practitioners to push their agenda. I'm not bashing them bc that is my preference over most conventional ones but they fall for it just like we do. It's a collective thoughtform now. I believe most people who get better on these restrictive diets are eating the SAD in the first place so they are bound to get better. Those of us who are already health conscious need to look more at TMS.

 

Thank you! Same story here and totally agree about the new functional medicine docs. While I love the holistic approach it seems everyone I know who goes to one comes out needing the same things... a food diary and eliminating dairy and gluten. That's SO MUCH! They are also very expensive with no insurance coverage. I truly hope it isn't a racket bc i do think most are trying to help people heal. They are just passing on what they are hearing like conventional docs do from medical school. Something is still missing there.