Leaky gut and mast cell activation

So my elderly mother took 9 days of doxy about 2.5 years ago. In retrospect it has become clear that it destroyed her gut health and led to mast cell activation syndrome. Within a week of taking the doxy she began reacting to supplements. Her reactions are total confusion. The reactions to vitamins and supplements increased over time and she can not take any RX, supplement, or vitamins. She also can’t take anything to combat the mast cell reactions; which are neurological. Some of the reactions to RX and supplements can last for weeks.

We did an IGG food allergy test because I realized last year that she was reactive to foods. The doctor that did this test understood that she had leaky gut but had no understanding of mast cells or her neurological reactions. We’ve been rotating foods since last September. She did get past many of the food intolerances but still reacts to nightshades, fermented, fungus, eggs, etc. She eats no processed foods. Prior to straightening out her diet she had lost 60 pounds un-intentionally and weighed less than 80 pounds. Since rotating foods and taking out processed foods, she has gained 7 pounds.

The traditional treatment for leaky gut pushes everything fermented like kefir, yogurt and bone broth. I’ve wasted so much time giving her foods, and supplements, that caused reactions because well-meaning but ignorant practitioners didn’t listen to me when I tell that she doesn’t tolerate supplements and fermented foods.

Her mast cell reactions have calmed down and they aren’t nearly as severe as they were compared to last year.

Will leaky gut heal on it’s own?

By the way, I joined the forum back in 2016 because we suspected Lyme. She has two bands – 39 and 41. Her memory is very poor. I think leaky gut is her main issue.

Any advice or suggestions or comments are appreciated.

I was diagnosed with IBS and leaky gut, following years on antibiotics which is of no surprise. I was already using the classic Lyme (anti-candida) diet so this was surprising.

Just about everything I was eating triggered what felt like an allergy response, despite the fact I had no real food allergy tests. I had some relief using an anti-inflammatory food diet called fodmap:

https://www.ibsdiets.org/fodmap-diet/fodmap-food-list/

You may also want to post in the IBS/Crohns forum for advice too.

That's so hard - I can't imagine where you can go with that barrier. to get a quick result.
My leaky gut has healed slowly overtime without taking supplements including probiotics and bone broth.. I think the suggestion 'V' has made, to go on the anti-inflammatory diet is very good. I have been on it for years. It does help.

cakegirl,

I don’t think leaky gut will heal on its own if the factor(s) contributing to it are not removed. Identifying those factors can be very difficult to decipher, IMO. Candida? Parasites? H. pylori? SIBO? Mold toxins? Food allergies or sensitivities? Celiac? Or any combination of critters or immune diseases.

Inflammation damages the gut. Pathogens and toxins create inflammatory immune responses. Inflammation causes the body to downshift and then things really get worse, as the gut and body become even more hospitable to pathogens.

The doctors I have seen have been far more interested in recommending a wagonload of supplements to stabilize me and treat symptoms than they are in identifying my specific causes. I still don’t know what is ruining my gut other than mold toxicity and ropeworm. The mold toxicity is a long, sad story, and the ropeworm nobody talks about.

Mold exposure can be a major trigger of MCAS. Is there mold in her environment?

Other environmental toxins also need to be eliminated - fragrance, chemicals from cleaning supplies, personal care products, smoke, etc.

It’s important that her environment be as clean as possible and mold-free. Mold is huge as an immune suppressor and an inflammatory agent. Water damaged and humid buildings can host a toxic soup of microbes and their associated toxins and byproducts.

The doctor suggested doxy as he was from New Jersey and familiar with Lyme. I regret ever letting her take the doxy. It's been swiftly downhill from there.

I don't know about mold. I do know that she can't consume shelf stable herbs/spices and I assume it's because of the mold on them. Same for nuts. I don't think we have mold or I would probably be reactive.

I have removed the foods she is sensitive to. It doesn't leave much to eat. Some foods she is only sensitive in big batches -- like nuts.

She could have parasites, candida, etc. but how can you treat them in someone whose mast cell activation is so severe? She can tolerate some supplements briefly but eventually I can tell she is reactive to them.

You are right - doctors push supplements. But they have no solution when someone can't take supplements.

She doesn't and hasn't eaten gluten, grains, dairy for over a year. An allergist suggested eliminating gluten. She isn't celiac but there was a number on the lab-work; which indicates her body is making antibodies to gluten because it has leaked into her bloodstream.

Aloe juice is supposed to be healing for the gut. Can she drink that? What about cabbage juice? Buhner recommends juicing cabbage for gut issues.

Never tried cabbage juice but I could look into that...

Other than the doxy - has she done any other treatment for her lyme infection?

Girlie said...
“She isn't celiac but there was a number on the lab-work; which indicates her body is making antibodies to gluten because it has leaked into her bloodstream.”

One of the tests for diagnosing celiac is an antibody test - what test was it that she had?

I did think she could have SIBO. Mainly because of all her neuro reactions to yeasts, fermented foods, fungus, kefir, etc. But mast cell activation also causes reactions to fermented foods. We tried allicin (garlic extract) to see if that would help but eventually she was reacting to it.

I do think that whatever she has is some sort of severe digestive disorder but no one has ever seen a digestive disorder cause severe neurological symptoms.

Girlie, we can't treat the Lyme or anything else. We tried a variety of Lyme herbs, tinctures, capsules since fall of 2016. They all can cause minor or over-the-top neurological reactions. The reactions became progressively worse over time to the point that even a single drop can make her delusional.

She had the t-Transglutaminase (tTG) IgA test. Her result was <2 U/ml. Negative is 0-3, Weak positive is 4-10, Positive is <10.

Ingesting certain foods, supplements, vitamins, RX can make her at best confused and at worst make her totally delusional. It's all related to digestion and release of mast cells.

The t-Transglutaminase (tTG) IgA test. Her result was <2 U/ml. That number should be zero but hers is a 2. The <2 indicates that her body is making antibodies.

Yes, we've been to an LLMD. He knew nothing of leaky gut. We've been to several integrative practitioners. All of them are fixated on supplements and none of them have ever seen leaky gut cause neuro symptoms. And none knew anything of mast cells.

“ She had the t-Transglutaminase (tTG) IgA test. Her result was <2 U/ml. Negative is 0-3, Weak positive is 4-10, Positive is <10.“

you mean Positive is > 10 ?



Her test result was less than 2
< 2 is less than 2

Negative is 0-3

Based on that - she’d be negative.

cakegirl said...
Negative for celiac. But any number indicates gluten antibodies are in your blood.

She can't tolerate anything with processed ingredients or added vitamins so elemental diets are impossible.

She didn’t have “a number”
That is a negative result meaning no antibodies.

<2 IS negative
She could be 0 with that result.
That isn’t saying she has antibodies
can’t be anymore negative.

Or is there another test result you didn’t post?

cakegirl said...
All of them are fixated on supplements and none of them have ever seen leaky gut cause neuro symptoms. And none knew anything of mast cells.

That's BS. Leaky gut is often related to autoimmune conditions and psych/neuro symptoms can come along with that. Not saying there can't be other factors that kick it off or influence it but i disagree with that. Even the GAPS diet is premised on things like schizophrenia and depression being based on leaky gut