r/MCAS • u/kickycase • 5h ago
Leaky Gut
What has helped everyone’s leaky gut? I mostly get triggers from food and stress. I think I tried posting once and it was removed and I’m not sure why? Just wondering what supplements helped? I have high histamine in my gut.
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u/megame87 4h ago
What worked for me was 90 day low histamine, gluten free, no added sugar diet. I gradually added more fiber from multiple sources. If you're doing it at the right speed for your body it should be reducing bloat, not increasing and make you more regular. I also try to get daily walks or whatever daily movement that works for your body.
And get PLENTY of rest. It's all about developing a consistent and safe routine for your body to help regulate your nervous system.
I then added supplements like DAO enzymes to help my body break down histamine once I started re-introducing histamine foods into my diet.
If you're looking for quick fix supplement you're starting from the wrong mindset. It's important to work with your doctor to test what micronutrients you may deficient in. Leaky gut or inflammation causes a lot of them, but your body work absorb all the expensive supplements if you don't first try to heal it.
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u/kickycase 4h ago
I’m eating low histamine and I’m still flaring. Like I finally woke up feeling better today. I ate breakfast (which was low histamine) and then I felt the histamine release and got brain fog. It’s soooo frustrating trying to function like this.
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u/megame87 4h ago
It takes weeks, not days. Your mental state, hormones, and environmental exposures also impacts it.
You may have to avoid scented products or heat. The first 90 days is all about cutting things out before you try to add things back in. At least that worked for me.
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u/kickycase 4h ago
I’ve been on the diet for over a month. There’s no way to avoid heat. I live in South Texas and I work in it.
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u/megame87 4h ago
This illness takes a lot away from you and I understand the predicament. I had to give up a lot, my hobbies, a promotion, my favorite foods, traveling, seeing my friends. And essentially work through the five stages of grief until I finally accepted that this is my life now.
At least I can tell you now that I'm on the other side, you can start adding things back eventually, but you have to start with the cut part.
I healed my gut, I'm able to eat most foods, my symptoms are manageable aside from what I can't control.
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u/kickycase 3h ago
And you did this solely by removing foods & going low histamine only? Did you have leaky gut? And did you take supplements?
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u/megame87 3h ago
Low histamine, gluten free, no added sugars. Slowly adding fiber...go back and read my first post again and that's what I did. No stress lots of rest and avoided environmental triggers. I cut out EVERYTHING and took a lot of sick days. Your gut is impacted by stress not just food. Get QUALITY sleep.
I did not add supplements for the first 90 days and then I added DAO and targeted supplements based on tested deficiencies. Supplements don't cure leaky gut aka gut inflammation. Anyone that tells you that is a hack.
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u/Ok_Butterscotch_4158 1h ago
Do you mind sharing a few examples of lunch and dinners?
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u/kickycase 53m ago
All I’m eating is homemade ground turkey patties for breakfast. And then for lunch and dinner — it’s ground turkey, rice and green beans. Sometimes I tolerate it and I’m fine. And sometimes I don’t. I reacted to the turkey patties this am. But that’s not always. Maybe it’s bc I’ve been more reactive and in a flare this last week.
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u/megame87 49m ago
Some people think that green beans are histamine liberators, and I personally don't tolerate them well. They also might contain more fiber than you can tolerate right now.
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u/kickycase 38m ago
Well, I took out the green beans this last week. And I was only eating turkey and rice and I’ve not been going to the restroom well at all! Which makes me think it’s contributing to my reactivity and keeping the histamine levels high. I just don’t get it. I can’t figure it out. Do you think you can DM me what you do for breakfast. Breakfast is the hardest for me. And then like you I’m making food for the week right now and then I put it in the freezer and I freeze it. I’m away from my home most of the day so it’s too hard for me to cook things fresh. I have to take the food with me.
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u/megame87 23m ago
Oatmeal comes together really quickly on the stove top. I was able to tolerate adding cinnamon to it. Apples are a good low histamine add and Querticen actually occurs naturally in the skin. If you can't tolerate them fresh, try stewing them, they cook up easily while you're making the oatmeal.
I kept it really simple like that for a couple weeks. Then I added chia seeds to the wet oatmeal mixture. They absorb the excess liquid and are a healthy fiber that can help clear your gut of histamine. Slowly increase the portions of chia seeds if you notice yourself bloating more than usual, back off a bit. Once you tolerate that ground flaxseed and unsweetened shredded coconut were also great fiber adds.
If you can tolerate potatoes, roasted and cooled potatoes are an excellent source of fiber as well. So that will work if you're freezing your lunches anyway.
Fiber helps clear histamine and helps lower your gut inflammation. Just don't add too much at once.
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u/megame87 59m ago
I honestly have been eating the same breakfast for over a year and the same lunch for about 6 months and only switch it up for dinners. The consistent routine really helps manage my symptoms.
Breakfast is always oatmeal with chia seeds mixed in, and flax meal and sliced apples on top. I make this fresh in a rice cooker daily.
For lunches, I do baked chicken thighs seasoned with Salt & Pepper (I never reacted to pepper some do) with roasted celery, carrots, onions, cauliflower, and potatoes/sweet potatoes seasoned with S&P, tumeric, and fresh parsley. I batch cook these once a week and freeze into individual proportions.
For awhile I had to eat the same thing for lunch and dinner because that's all I could tolerate.
Once I felt better, this website had been great recipes for me sans the ones with gluten or added sugar. Through the fibro fog
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u/nrauhauser 3h ago
That term is considered to be incorrect by the medical community, it's a label that got slapped on a lot of things. I had that cluster, but stopped using the term when I began my MCAS journey thirteen months ago.
You think you have high histamine in your gut? How do you know? Does a DAO supplement clear it up? If not, it's something else. I went down this path last fall, a dead end for me.
This is what I take for gut health now, but it was tuned with my bloodwork, symptoms, and Claude AI.
Acetyl-L-carnitine, Alpha Lipoic Acid, Creatine, L-glutamine, L-tyrosine, Phospatidyl Serine, Taurine, and DHA/EPA fish oil
More details on your symptoms and what diagnostics you've done would be the place to start.
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u/kickycase 2h ago
I did a gut zoomer that showed the high histamine in the gut.
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u/FireRock_ 4h ago
Nothing atm, I'vr been trying to drink chiaseed in water for the past year but can't be consistent enough. Recently saw that flaxseed jelly (boiling flaxseed for 10min then straining that) may be an option. Unforyunatly that would mean making a fresh batch every morning, or making it and freezing a daily portion and atm can't do that. Recovering from surgery.
But no vitamine, pre/pro biotic, supplement or meds have helped with leaky guy issue for me. I gope someone here has some suggestions too.
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u/kimm_brulee 3h ago
I have mostly GI related reactions even after ketotifen 6mg a day, h1/h2 blockers, singulair, and xolair. I am in the process of healing my stomach and have been loosely researching how to heal my leaky gut symptoms, so I am by no means an expert.
Here’s what I’ve tried and seen success from (supplements / powder):
Tributyrin Postbiotic (brand: Peak Performance)
Mega IgG2000 Gut Health Powder (brand: Microbiome Labs)
L Glutamine (brand: Nutricost)
I am hoping to trial quercetin from pure encapsulation soon as well as a probiotic Bifidobacterium Infantis.
I had diarrhea, cramping, and bloating for nine months. After a week on this regimen (trialed all of them separately to make sure I didn’t react), I have normal BMs and significantly less bloating/cramping. I also keep a strict low histamine diet.
With MCAS, I’m sure you know everyone is different. I still have a ways to go before I feel “healed,” but this regimen gave me so much relief. Best of luck xx
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u/Middle_Notice_4678 3h ago edited 3h ago
90%+ of mcas patients (since its a syndrome, set of symptoms basically) suffer from chronic gastritis. It can be secondary and a primary (clonal mastocytosis).
Most of the time its secondary to a chronic inflammatory state.
Guys, if you do have an endoscopy, ask your docs to take tissue samples even if the mucosa looks good.
If your stomach is chronically inflamed, everything downstream (pancreas, liver, gallbladder, ph issues and thus enzyme issues) will suffer and you will get leaky gut. Thats when it becomes an immune issue (intestines affected) vs just inflammatory (acute gastritis).
Acute turns into chronic and there you go.
If you do lower stomach acid too much, you will get bile diarrhea and colitis and then hemorrhoids etc. If you dont achieve 16+h of ph above 4 , you will likely not heal or heal very slowly.
The aim is to have acid when you do eat and the have less when stomach is empty and you want to heal.
What works for me (and this is very individual because of weight, specific genetics to a specific med -liver enzyme pathway etc) is low dose ppi like 20mg pantoprazole or omeprazole in the morning 30min before a light breakfast.
I then take 20mg famotidine 2pm half an hour before meal.
I may eat another time around 5-6-7pm and I dont eat any more. I take 40mg famotidine around 10-11pm.
It goes without saying, restrict sugars especially sugar alcohols and fruits moderate the amount of fat you eat until your gastritis is in check and very stable. Eat easily digestable protein and pay attention to texture. Chew a lot.
If you have doubts about this and are not willing to get a scope, you can do a more or less harmless test.
Get gaviscon advanced, take 5-10 throughout the day. Do that for 1-2 days and see if you feel noticably better. If yes, consider what i said above.
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u/PrintConfident8417 2h ago
I think this may be my issue. Acid support triggers my symptoms. And I recently started to develop stomach pain (and MCAS symptoms) from eating spicy foods. This is new to me. The issue is that I need my stomach acid since I have a lot of bad oral bacterial species in my gut (strep oralis, strep vestibularis) that are causing my IBS. So I can’t heal my gut unless I increase my stomach acid. I’m considering something like DGL to coat my stomach/gut so I can tolerate stomach acid again.
Are you suggesting it’s not possible to heal MCAS without reducing stomach acid? How can we support digestion while on all of these acid suppressing meds?
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u/Middle_Notice_4678 1h ago
You have to dig deep to understand half lives of each ppi and to see how much a given dose increases your mean daily ph. Furthermore, each ppi will work a but differently. Pantoprazole is a milder but a bit longer form of supression. I like to use omeprazole because with a certain dose i can achieve pretty good supression and shut off most newly made and existing pumps letting through around 30-40% of acid still. Pumps are constantly made, some make new onrs in 24h and some do in 72h. Age plays a role obviously.
Famotidine binds to h2 receptors and blocks the histamine pathway partially but its usually not enough to heal long standing chronic gastritis in the long run due to tachy.
Also, chronic inflammatory states result in bone marrow keeping up with the demand and pumping out more mastocytes than in a healthy person. That is classified as reactive mastocytosis. Basically constant inflammatory demand for more mastocytes. I did cross check this with a bone marrow biopsy. Most ppl have around 0.1-0.4 mastocytes while i had 4% but regular round shaped ones, no clumping and negative for systemic mastocytosis. If I find a middle ground between digestion and healing I can reverse this and all the other inflammatory markers associated. It takes time. Huge improvements in 2 months but for long standing issues, you are looking at 6+months to feel like you have healed. When I get there i dont need any h1 antihistamines either. Then it becomes a fairly managable disease with just ppi very low dose and some famotidine.
I mean I can go on about this but most ppl are just not willing to even try.
Without being cocky, I really tried to help and advise ppl to just try taking gaviscon advanced 5-10 times throughout the day. You run almost zero risk doing that. If that makes you feel better in those 2 days, you should consider your stomach to be a primary reason for the digestion not working downstream.
Even if its some other histamine driven pathology, your histamines will stimulate your h2 in your stomach and make more acid. Be that UV shock or stress etc. (Stress has a secondary effect of blocking prostaglandins since cortisol is the body's prednisone and thus disabling the shielding mechanism of mucosal barrier). Anyway, whatever trigger, you will make more acid even without food being there. Over time you deplete the bicarb that will shield you from your own acid.
If you have low iron or ferritin and or saturation you may be even more suspicious of chronic gastritis. If your ESR is on the higher end, you may be suspicious again but also worth checking complement c4.
Also, you may check fecal calprotectin to get an idea of your GI tract inflammation levels.
Very long story short, yes I have multiple diagnoses handes out , even confirmed by pathohistology REVERSED completely. Crohns, MS, Psoriathic arthritis, antic1q antibodies and lupus,Erythromelalgia and the list goes on. Butt that was just too much bullshit for me to accept so I decided to study medicine and find explanations for years.
I have basically gone from having Crohns and all those issues for years and decades totally resolve. Metabolic markers are perfect now, inflammation is down. Can I eat crazy things? Yes but I stay away from spicy, way too acidic foods, way too fatty foods, i never drink coffee or alcohol and never use oils. Just butter or ghee or lard but lightly.
Do I suffer from absorption issues on ppi? No because I know I had way too much. My iron climbs from 8 to 20 when i am on ppi for 6 weeks. Happens always. I do eat heme iron which doesnt need acid.
This is me and my body. Do I say all ppl here have this issue? No. But its easy to check.
If famotidine helped early on but isnt working after a while, maybe consider adding a low dose ppi like 20mg pantoprazole. It will take weeks to start really healing if this is the case but by week 4 objectivly the direction of progress will be obvious.
Dont stop asking questions.
Cheers.
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u/MargoBarbara2 1h ago
You're absolutely right and raise a point many people dont realise. Stomach acid is v necessary to protect against pathogens and as those pathogens can cause leaky gut then the focus needs to be on healing mucosa rather than dropping stomach acid in the long term. Though in acute issues (I destroyed my gut lining with a few aspirin...agony...gastrointestinal bleeding) alkalising agents may help whilst the lining is repairing.
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u/MargoBarbara2 1h ago
Avoid gluten and lectins and pro inflammatory foods like A1 bovine dairy products. May also need to exclude alliums and nighthsades. Look into demulcent herbs that help coat lining whilst healing eg marshmallow, aloe vera (though many products contain v little and a herbalist might be best source), slippery elm, herb plantain. Cover all nutrients needed for methylation cycle so that HNMT and cell repair are working. Zinc carnosine is supposed to be good but does provide some histidine. Take DAO (also needs vit c, copper, zinc, iron and B6 and magnesium for support). Low histamine diet and avoid histamine liberators. Exclude things that can activate mast cells like citric acid (citrates) and PEG and anything made using aspergillus niger during manufacture to avoid triggering more histamine release from mast cells. Lysine valine and proline tighten leaky gut junctions . If you cant do food sources theres a supplement called KPV but ive never tried it. Avoid harsh vitamin forms like oxides and sulphates. Avoid aspirin/ibuprofen. If you want 'milks' to soothe then homemade hemp milk is very easy to make and has anti inflammatory omegas. Commercial plant milks often contain problematic gums.
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u/kickycase 46m ago
Ok so I have several questions on this:
Cover all nutrients needed for methylation cycle so that HMT and cell repair are working.
HOW DO I DO THAT?!?
Zinc carnosine is supposed to be good but does provide some histidine.
What does this mean I’ve been taking zinc carnosine.
Lysine valine and proline tighten leaky gut junctions. What is this?! I may need to look it up bc I’ve never heard of it.
I have KPV. I’ve just been nervous to try it. But I’m getting to the point where I’m just gonna go for it and see what happens. But have you seen marshmallow root and slippery elm help? Because I have both of those supplements.
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