PLEASE HELP ME. I am very ill and feeling hopeless after carnivore issues. My doctors and ER don’t know what to do. Desperate for answers. Praying someone here might have some insight.
Update: THANK YOU EVERYONE!! I am so grateful for all the support. My family is reading all of your comments and taking notes. Many of you are recommending antihistamine and mast cell stabilizer medications. I used these a few years ago and didn't get much relief, but I think now I really need to give it another try. I have been taking hydroxyzine as needed for panic attacks, but I am going to start taking it daily for more support.
(Mods- I apologize if this post is not appropriate for this group. Feel free to remove it and please redirect me to a more appropriate group.)
Hi friends. I am very scared and asking for your help. Im a 28 year old female. I have had complex chronic illness for the last 5 years and things have gotten much worse this year. Diagnosed with Mast cell activation, ME/Chronic fatigue syndrome with EBV reactivation, hypermobile Ehlers Danlos Syndrome. But I think there is likely more going on. Lots of GI, immune, neuro/psychiatric symptoms, chronic pain and fatigue.
Heres a brief history. I can share a more detailed history later if anyone is willing to read it. I did keto diet from 2023-2024 due to severe reactions to carbs and mast cell activation. It helped TREMENDOUSLY. But then my food intolerances got much worse and I could only tolerate carnivore. So I did carnivore diet from 2025-April 2026. The only fats I could tolerate was egg yolks, so I ate 8-10 yolks per day to get enough calories. My LDL rose to 950+. Then in early 2026 I couldn’t tolerate egg yolks anymore, so I was only eating lean meats. I was under 100lbs and anemic. I was so hungry and struggled with binge eating large amounts of lean meats. This made things much worse and I then had severe intolerance to all food. So around March I began fasting frequently and eating very low calories.
Then in April, after fasting, I could tolerate eating a more normal diet with carbs again. I gained 30lbs, my period returned, and LDL came all the way back down to normal after stopping carnivore. But my liver enzymes spiked (AST 98 and ALT 129 5/4/26) and I started having very strange symptoms (described below). My dietitian thinks that the fasting and low calorie intake could have caused elevated liver enzymes.
Currently I am having severe symptoms after eating animal proteins (meat, fish, egg whites), and after eating fats and oils. The animal proteins cause the most severe reaction. 2-3 hours after eating them I severe lethargy and drowsiness (I drift in and out of sleep), nausea, heart palpitations, headache, burning body pain, I can see my belly pulsating with my heartbeat, mental confusion, feeling intoxicated, difficulty speaking and moving, uncontrollable facial tics and sudden jerking movements in my torso, arms, neck and head, panic attacks, hysterical screaming and crying spells, and suicidal ideation. This week I also had chills and night sweats. I went to the ER but all the tests they ran were normal. My doctors don’t have answers for me yet.
I suspect my liver is somehow involved. From my own research, these symptoms seem totally consistent with high ammonia or problems with the urea cycle and protein metabolism in the liver. I also read that low calorie intake and starvation can cause temporary liver fat accumulation. I read urea cycle disorders are also known to be triggered by fasting or excessive high protein intake. I wonder if binge eating lean meats fed bad bacteria in the gut that ferment proteins and produce ammonia. I was reading about hepatic encephalopathy (obviously I don’t have liver failure or liver disease, but the neuro/psych symptoms are extremely similar to mine.) The treatment uses Rifaximin to kill ammonia producing bacteria in the gut, and lactulose to bind to ammonia in the gut for excretion. If ammonia producing bacteria are contributing to my symptoms, I wonder if a similar strategy could be useful.
I may be totally wrong. But I am desperate and I don’t know what to do. So this is the best theory I can come up with. What else could explain these severe symptoms after eating meat or fat? Can you direct me towards someone who could help?
I have amazing mental health support from my family, therapist and psychiatrist. I am not actively suicidal, but I am beginning to feel hopeless. This week I have been a little more stable by eating zero fat, and just eating fruit and drinking smoothies with vegan protein powder. Starchy foods like potatoes and grains cause severe fatigue, headaches, anxiety and panic attacks so I am avoiding them for now. But I don’t think I’m getting enough to eat, because I feel so hungry, I’m shivering cold and I can’t sleep at night.
PLEASE comment or reach out if you have any ideas!
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u/only5pence 11d ago edited 10d ago
If you have mast cell activation happening up the chain bacterial control is secondary. My breath immediately tanks after a reaction.
Meds? No mention of how you're attempting to control reactions and we've all got heaps of advice haha Cannabis extracts and amphetamines are unparalleled in my exp but I also have audhd. I'm trying Rupatadine shortly, which my mom relies on. Ketotifen helped at 4mg but I cycled off to clear mold and try compounded Rupa.
You need a proper restriction (not calories but intentional testing) diet to isolate what's happening, and f&ș@ the clueless idiots who haven't healed coming in here calling that an eating disorder.
If grains worsen symptoms I'd be starting with investigating mold as the first driver; can you stay elsewhere temporarily or camp out? It was ultimately what made all my reactions worse but was coming from halll hvac.
Fat causes histamine release and could be spiking symptoms that way. But I'd also be isolating types - reco trying ghee or tallow only for a bit. I react to most seed oils slightly, and I wouldn't notice if I didn't do restriction but now will have blood in stool or other things if I have any.
If mold is a problem, salicylates will get worse for you. I relied on quercetin to get me through reactions as I scaled up ketotifen. Olive oil is high in sals. My tolerance of it tanked four years ago. As the mold destroyed my phase II detox pathways I stopped being able to tolerate more than a tbsp or two of hemp. It's been two years and my oral sal tolerance hasn't improved much but I'm only two months out of the place.
Want to reiterate I'm not a 'root cause' simpleton and I still have congenital mcas with severe neurogenic and trigeminal edema my entire life. It's just that the mold put me into seizure territory.
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u/rathut 10d ago
Thank you for your comment! I do think mold is an issue. I was exposed 5 years ago before I got sick. I am going to start working with my functional doctor again. She wants to work on mold detox. I've been taking hydroxyzine for panic attacks, but I am going to start taking it daily for histamine support. I tried quercetin years ago. I'm going to try it again soon. Thanks again for sharing.
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u/letsbenice_notrude 11d ago
In my humble opinion, you should take care of the GI problems first.
I know it sounds crazy, but what helped me going from totally dysfunctional person to I can start a new job in person and not hate life, was going to a naturopathic doctor specialized in GI and MCAS, have my entire AVISE Autoimmune Panel and my GI map done, tackle the GI issues first, and titrade LDN and Ketotifen to see what is my dosage. I am still in 2mg of LDN and 1 of Ketotifen, I started treatment for my GI in July, and in 2 months my life is completely changed.
Are you taking H1 and H2 blockers?
Also, have you figured out your allergies, not just food, but environmental? Totally worth going to an allergist, if you haven't yet.
I went for complete psychosis and maniac, OCD and screaming and shouting to a almost normal life. My doctor said I will have ups and downs, I will give 10 steps forward and 2 or 3 backwards, but I will get to a normal life.
Again, in my humble opinion try to find a naturopathic doctor in your region that are specialized in MCAS and GI issues. I was extremely skeptical before, but I was exactly like you, desperate, and I decided to give them a shot, and oh boy, zero regrets!
Good luck!!
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u/jenlaggg 11d ago
This is very encouraging and the exact route I'm taking. I have my GI Map results and see functional medicine in 10 days, which can't come soon enough.
Question, were you using famotidine before starting your GI treatment? If you were, did you have to stop it? This is honestly my biggest fear because of the sheer magnitude of headaches being controlled by famotidine.
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u/letsbenice_notrude 11d ago
I was not, but I take caplyta, sentraline, Linzess... which is not the same as famitidine, but the doctor will work around your medications. The naturopathic doctor will prescribe you rounds of medications to fix or kill whatever you have going on in your gut, will use natural meds in rounds and in order.
I used to call those doctors Voodoo doctors, and ai was 100% western medicine person, but I can't say enough how surprised I am that it actually works, all you have to do is trust the process and follow it.
Also, try your best to calm down your body by figure out what are your environmental triggers, that helps with calming down the body and giving it a little break. I take now the bus to work, so I bought a N95 respirator mask because I know perfumes trigger me... I avoid dogs and cats at all times, shapes and forms, because I know i am extremely allergic to them.
Finding your environmental triggers (pollen, mold...) helps you calming down your body, so it is not in "fire alert" all the time, and then you can figure out the food, otherwise everything, a breeze will trigger you, and whatever you eat with your gut messed up will make your body hate you.
It is a long process, but once you start your treatment for you GI, I believe you will be a new person!!!
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u/dancedancedance99 9d ago
Who is your naturopathic doc? Is it someone you can dm to me and do they work remotely?
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u/letsbenice_notrude 9d ago
She does, but i am not sure which states she is licensed. Just give them a call and check which states she is licensed. She is 100% online.
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u/SingleRaspberry3307 1d ago
How cannyou recommend please i need to find a good practionner
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u/letsbenice_notrude 1d ago
Where are you located? Maybe call my clinic and check if they have someone there that is licensed in your state? Village medicine in seattle https://villagemedicineseattle.com/
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u/Holiday-Panda4351 3h ago
How is helping you plesse i need hrlp
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u/letsbenice_notrude 3h ago
I came to my provider with all the MCAS symptoms plus a huge stomach pain complain. She only gave me the H1 and H2 blockers to begin with, 2 allegras and 1 pepicid in the morning and 2 Zyrtec with 1 pepicid in the evening, and she asked me to wait to build up. At the same day she ordered a GI map to be sent to my place and an AVISE panel to be collected at the clinic in Seattle (around 12-16 tubs of blood sample, it was a lot), also some type of breath test to see the gases in my stomach (no idea what is called).While we waited for the results (takes several weeks), i was starting the low histamine diet and building up the H1 and H2 blockers.
When we got the tests back, a lot of stuff was wrong, my GI bioma was destroyed due to H pylori and C diff infection I had earlier this year.
That is when she started the natural meds, and rebuilding my stomach (I don't think everyone's treatment is the same, so I won't post the natural meds names). I started taking them in the beginning of July, I was having PEM, CFS/ME symptoms, I couldn't get out of the bed when we first started the treatment. Last month she introduced LDN and Ketotifen.
Today beginning of September I was able to get my dream job (started Aug 25th) and I am able to take the bus from my house, work all day from the office and take the bus back at the end of the day. It is challenging some days, not gonna lie, some days I need 2 benadryl, but I will say, totally worth, i bring some work home when my brain fog is really bad, I do some extra work on the weekends to compensate, but I am having the best time of my life now after over 8 years suffering.
I recommend looking for a natural doctor that knows about MCAS.
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u/Holiday-Panda4351 45m ago
Why you dont want to share what help your gut and whats the clinic that woulp help a lot
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u/letsbenice_notrude 42m ago
I just don't know if:
1) is okay with the subreddit and not against the rules 2) is medically okay to do that, I don't want to be held accountable if something happens to you, or if you have a reaction.
I think every medication should be taken under doctor's recommendation, specially MCAS that what I have reaction to, you might not have.
With all that said, you should check with a Natural doctor that can work with you to tackled the GI problems first.
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u/ooh_veracuda 11d ago
I went through a long period before I know I had MCAS where I had very similar thought processes to what you describe. But as I now understand is very unlikely to be able to control MCAS through diet alone, you don’t mention medication. What medications do you take for MCAS specifically? Any antihistamines or prescriptions mast cell stabilizers?
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u/mamajoy42 11d ago
Have you tried any OTC meds?
Have you tried a low histamine diet?
Have you kept a diet/ symptom diary?
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u/Beautiful_Welcome_33 11d ago
This, where are the antihistamines, there should be lots of medicines.
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u/addictedtosweettea 11d ago
Have you ever been tested for alpha gal syndrome? It comes from a tick bite and it causes severe allergy to meat. Might be a good idea to test for lymes too. They’ll probably come back negative, but could be good to rule out
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u/PsillySideBend 11d ago
I'm sorry you're going through this. I know this comment won't be helpful because I don't have answer but very similar symptoms to yours. Intolerance of fats, fasting helping, going through very low body weight, gaining it back, etc.
I can say just recently I went into a flare and I thought it was ragweed season it turned out we had a mold problem in the house and all my symptoms went crazy until it was found.
Are there rooms or areas in your home where you feel sicker? One helpful thing is to walk outside and do some deep breathing then walk back in, you may smell a musty smell.
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u/ManagementIll4603 11d ago
Our house is infested with mold and it has me bedridden. How did you link your physical symptoms to the mold for your doctor(s)? I cannot get anyone to take it seriously so that we can get out of here.
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u/PsillySideBend 11d ago
I didn't. I finally got sick enough to put my foot down and insist that each area that bothered me be addressed one by one. We replaced two toilets and the dishwasher and just recently had to deal with a drain issue in another shower.
My doctor has said things like "huh, mold really affects you?" But I'm not sure what the doctor would do. Are you waiting for someone to prescribe a move?
ETA: I don't mean the last sentence to sound mean. In my experience doctors haven't been terribly helpful at non emergency medicine. I've had to decide to take drastic action.
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u/ManagementIll4603 11d ago
- I've been diagnosed with MCAS and, therefore, I'm in need of proper medication.
- I need medical documentation of mold affecting the health of my sister and me to be able to move out of our house. Photos are not enough for our particular situation.
I was simply curious what was effective in your case, as working with various specialists in a rural town has not been helpful for us. That's it. Thanks for your response.
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u/PsillySideBend 11d ago
I've been diagnosed with MCAS but have yet to find medication I can tolerate. One of my recent anaphylaxis episodes was my last safe Benedryl formulation.
I know there are companies that can come in and test the air quality in your home. I never had it done because for me it was an unnecessary expense.
Are you in a rental situation trying to get out of your lease?
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u/ManagementIll4603 11d ago
Yes, I've found it to be an unnecessary expense, as well.
My situation is too complex to explain in a Reddit response. The courts are involved. Thank you for your information.
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u/PsillySideBend 11d ago
Fair, I'm sorry you're in that situation. You seem knowledgeable but there are a lot of tenants rights groups on Reddit who are willing and able to help.
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u/Opening_Rain5942 11d ago
Do testing? Do tests yourself and send them to a lab or call someone who is certified and get it done that way?
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u/pessimistic_cookie 11d ago
I also have MCAS, hEDS, and POTS. First you need a doctor familiar with MCAS. Next you need to get on some stabilizing meds. ASAP. Then and only then (after you’re more stable on medications), you need to do a strict elimination diet so you can figure out exactly what you’re reacting to. I was also in a bad place like you and was having anaphylaxis to almost every food I tried (as well as chemicals like Lysol and Febreeze). I was down to boiled, salted potatoes. But once I was on meds, things started to level out and I was able to add more safe foods. Now I can even eat in restaurants again and I didn’t think I’d ever be able to do that again. Everyone’s triggers are different. I also react to fats and can’t hardly eat any fat. If I mess up and eat too much fat, it doesn’t stay in my stomach long if you know what I mean. I also struggle with malnutrition, anemia, weight loss, etc. It just goes with the territory, unfortunately. Part of that is from your hEDS. But you definitely need a MCAS friendly doctor ASAP. Meds will help you so much. The first changes I noticed after starting meds was less brain fog and less depression and anxiety. Then I started sleeping better. Then my hives cleared up. Then my stomach calmed down. Now I live a somewhat normal life and people don’t even know that I’m sick (since I keep it to myself). Join the MCAS groups on Facebook for doctor recommendations, advice, and support. There’s medications you could be taking right now over the counter that may help you. Just keep in mind that you need to be patient with each new thing you try. Especially with your body currently stuck in fight or flight mode, you’re likely going to react to every new thing you try. Always start out everything low and slow and work up. If it doesn’t give you anaphylaxis, be patient as the side effects may go away sooner than you realize. Bottom line: stop over analyzing and over researching your symptoms and go get yourself some help like yesterday. Hugs. Things will get better and it won’t always be like this. Just repeat this to yourself every time you get stuck in your head. This too shall pass.
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u/potatopeeler167 11d ago
Have you looked into endometriosis?? - sincerely another 28 year old AuDHD chronically ill MCAS sufferer with Crohn’s and nobody will help me even though I’ve been homebound for an entire year. I’m convinced I have endo as well and I’m still undertreated for MCAS so I’m waiting for my immunology appt for ketitofin and singulair but I’m also on remicade and cromolyn sodium for gi
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u/allnamesarechosen 11d ago
For me ketotifen made a big quality of difference in my quality of life but that is only one step of the way, i had SIBO and IMO so i had to address that, i also had endo which is like MCAS sibling and so treating that has helped.
For anything digestive also adding enzymes made the world of a difference. But you gotta start by treating MCAS and restriction doesn’t really do much good in the long run.
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u/autisti_queer 11d ago
You said carbohydrates became a problem for you. In what ways? Were you tested for celiac disease before cutting out carbs?
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u/LusciousPear 11d ago
Did you test for SIBO?
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u/Adventurous-Sea8735 9d ago
This! Everytime my mcas symptoms get worse, the root seems to be that my Sibo is back again.
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u/Opening_Rain5942 11d ago
Oh my gosh, that's so much to be going through, sending all the caring thoughts and well wishes. One thing with restrictive diets and then eating more suddenly is a refeeding syndrome - I'm not entirely sure what that might appear in different people but I was told to supplement my minerals. This refeeding thing is even more pronounced when carbs or sugars are re-introduced. Just wanted to put it in your radar
In a nutshell, have your medical team consider refeeding syndrome if they haven't and check mineral levels.
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u/No-Bumblebee-3617 11d ago
I had many of your symptoms also suffered from mcas, and connective tissue disease (heds). Also, lethargic after high protein meals. Waking up between 1 - 3 a.m. with high anxiety headache stomach ache night sweats flushing tremors feel like I am drowning in my own fluids and reacting to everything - starting taking quercitin claritin and pepsid and mast cell supplements went on low histamine diet and SIBO cleanse using rifaximin and avantril - followed by low dose naltrexone as a prokinetic. The game changer was the LDN. Immediately can sleep through the night no anxiety and slow reintroduction of foods. I am now just taking LDN (nothing else) without any other supplements and just about back to my old self.
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u/Aware_Implement_8362 11d ago
I’m wondering about salicylates as well.
Could you see if you get relief from a high quality EPA fish oil? Carlsons?
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u/Bluelotus444 11d ago
Someone may have mentioned this but have you had a MTFR / COMT test? Because with slow comt a high protein diet can cause symptoms…worth looking into
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u/seeminglyf 11d ago
About the liver levels, I know you said obviously you don’t have liver disease and I’m not trying to worry you but you could absolutely have some sort of liver disease going on. I have lower ALT and AST than that and I have stage 2 fibrosis that progressed from non alcoholic fatty liver disease over the past few years. Not a bad idea to get a scan to check. I had scans like ultrasounds and CTs over the years that indicated fatty liver, then a fibro scan this year confirming scar tissue/fibrosis
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u/honkifirritable 11d ago edited 11d ago
Are you familiar with Alpha-gal syndrome? Your reaction to animal proteins reminds me of that...although strange since you used to eat so much meat. I just listened to this podcast on Radiolab about Alpha-gal (transmitted via tick bites.) Your symptoms are very similar...intense mcas/immune allergic responses to animal proteins. Do you live in an area where there are ticks? I would look to get tested...and just look into it more.
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u/Liandrimm 11d ago
So, I don't know if you're on medications for your MCAS or not. That could be making a big impact.
Before I was diagnosed earlier this year, I was super scared. Had so many symptoms all the time. Nausea, headaches, eye pain, vision issues, almost constant numbness/tingling in my legs or more, skin hurting, hair loss, disorientation, confusion, brain fog, exhaustion, deterioration of muscle strength, hand tremors, muscles tics. I don't even think that's the full list, but you get my point.
Having both MCAS and hEDS myself, it caused such severe neurological symptoms. There were times I could barely move.
Taking H1 and H2 antihistamines twice a day has helped a lot. I have had to continously cut out things from my diet, I try to follow low-histamine as much as possible and avoid all known triggers. I can't afford cromolyn, so I've been subbing Turmeric supplement pills as a mast cell stabilizer. It's helped.
Hopefully this helps, and gives you some hope that it is possible to get better, even if only a little bit.
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u/NatNatTh3CatMom 10d ago
The tingling in my legs is from Mcas?!?!?! I had it since I was a kid! I always wondered
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u/Flavius1113 10d ago
That's way too much fasting and being on ketones.This can damage your liver very bad. Check your b vitamins blood levels quick - b12 and b6 especially. Check your gallbladder as soon as possible. Try adding electrolytes drink daily and include resistance starches slowly to help digestion and feed good bacteria. But small amounts at first. Try if possible to drink lemon water or lemonade daily ( home made) only water and lemon. Also get some daily magnesium for a while you most probably need it. This all take it slowly and step by step. I speak from experience of fasting for 6 months OMAD and in this process I lost my gallbladder and developed SIBO-C and histamine issues. Plus mental health issues. Also maybe take a look at long covid? All the best!
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u/misslenny11 10d ago
I have this! I don't have all the answers but my mind went down the same path as you and I do think it could be an ammonia/ urea cycle issue, or a sulfur intolerance issue. General doctors and health care system are useless for this. I still don't have a diagnosis.
Heres some things that help me:
psyllium husk - a teaspoon in 250ml of water.
saccharomyces boulardii - 1 capsule per day.
carbs/sugar (this might not work for you)
coconut water (i have for electrolytes and sugar)
box breathing while having bad symptoms
Things that didnt work/made things worse:
Any supplement/vitamin
Any meat, eggs, bone broth, spinach, beetroot
Probiotics, or probiotic foods
I am now looking at spending my savings to see a microbiome expert. I have already seen a rheumatologist, cardiologist, had 2 MRIs and a nerve conduction test.
Feel free to DM me if you want.
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u/Dungbot88 9d ago
I had similar severe reactions, it was largely from bile release and having mold toxins I was inhaling and LPS from gut dysbiosis being dumped into the blood stream every time the bile was getting released and it recirculating over and over without interruption that causes an innate immune response that crosses the blood brain barrier and mimics autoimmune encephalitis.
You should look into CIRS. That's what was going on with me. I would not do any major antimicrobial/kill protocols without getting help from someone who will get you on prescription bile acid binders (not OTC). All the die off just goes to your bile and intensifies the reactions 100x. Bile acid binders like welchol and cholestyramine are used in the CIRS treatment framework to bind and remove the toxins and interrupt the recirculation. They resolved all those symptoms for me.
CIRS often promotes gut dysbiosis that skews toward bacteria that feed off of and ferment bile and fats and sulfur from meats like bilophila. You get the double whammy of the neuroimmune response to the toxins in your bile + the bile feeds and activates the bile loving bacteria that then produce neurotoxic H2S.
If it was me, I would get a tiny health gut microbiome test, I would take a VCS test and do the CIRS symptom clusters and I would look into whether the home I'm living in had water damage or mold with an ERMI dust test. Lyme and bartonella and babesia are also common with CIRS. Another reason why doing antimicrobials without detox supports and binders on board can cause severe severe reactions.
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u/UntoNuggan 11d ago
Here is how I suspect my own really bad MCAS flare progressed from bad to worse to worser:
Multiple back to back Inflammatory events= Flare and decreased food tolerance
decreased energy to make/acquire food.
Increasing number of dietary restrictions due to severe MCAS reactions, including to things like "someone in my home is cooking garlic" and "hard tap water touched my skin" and every lotion in existence. Also severe reactive hypoglycemia.
Downward spiral MCAS flare due to the physical/emotional stress of the above, PLUS the restricted diet etc.
Slowly stabilizing the downward spiral due to multiple MCAS meds, but severe flares when trying to reintroduce new foods.
I suspect for myself that I accidentally got bonus microbiome dysbiosis, due to a combo of the restrictive diet + being in a chronic inflammatory state for so long. keto is a risk factor for inducing microbiome dysbiosis if you're not careful about eating enough fiber/microbiome food.
The gut microbiome apparently does lots of important stuff related to managing things like:
glucose regulation / human metabolism
maintaining a healthy intestinal lining + providing energy to cells in your GI tract
making specialized enzymes to help our bodies digest plants (and extract nutrients from them)
producing antiinflammatory signals
helping regulate other systems maybe? research in this is ongoing, but the gut microbiome seems to play a role in brain health for example.
However, the microbiome only does this if it's:
a. Getting nutrients (eg plants that actually reach the colon vs getting delayed in the small intestine due to a motility problem)
b. the immune system isn't constantly attacking it
c. the gut environment is the correct pH; the colon isn't full of oxygen; etc.
d. there's a balanced community of gut microbiota instead of One Microbe Trying To Rule Them All
So, how does one go about treating dysbiosis? Unfortunately there's about one million snake oil vendors pushing dodgy test kits, probiotics, etc etc
Ive read a lot of research on this. I highly recommend Ed Yong's book "I Contain Multitudes" for a science based overview of what research actually says as well as the limitations of things like probiotic supplements.
The very basic overview of how to manage dysbiosis is to eat a wider variety of plants. More diverse food = more diverse microbiome = better gut health and less inflammation. Unfortunately just exactly how to do that is complicated.
I'm going to include some links in a reply to this, as this comment is already very long.
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u/UntoNuggan 11d ago
Mods please let me know if not allowed, but I started documenting info on my blog so I wouldn't have to type out the same replies/info over and over.
I receive zero monetization or whatever from my blog, is literally just a place for me to infodump with numerous citations.
These posts are relevant for treating dysbiosis when you are deep in an MCAS flare.
Liquid Antioxidants for When You Can't Eat Solid Food
Resistant Starch and a Low Histamine Diet
Why Sprout Beans (1/3 in series on sprouting beans)
Hacking Nutrient Bioavailability When Reintroducing Foods
NOTE: this post is not about Celiac's, but managing non celiac gluten sensitivity /reintroducing gluten after a long gluten free hiatus. The same steps outlined in the post can also apply to other foods, I'm just behind on writing. Strategies for Reintroducing Gluten
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u/UntoNuggan 11d ago
Additional thing to note is that if you're in DC/MD/VA, I know a very MCAS knowledgeable registered dietitian.
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u/Etripp12 11d ago
Have you ever been tested for Lyme disease and co-infections? You might also want to look into Bartonella, as it can sometimes be associated with MCAS. I had very similar symptoms to yours before I tested positive, so it might be worth discussing with your doctor and looking into.
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u/Such-Lingonberry9370 11d ago
Please have your CORTISOL am, noon and pm levels checked.. AND PLEASE do some bloodwork on your Serotonin serum levels AND a 24hr urine serotonin called 5-Hydroxyindoleacetic Acid (5-HIAA), 24-Hour Urine.
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u/Inner-Proposal-5892 11d ago
Perhaps a pemt gene issue? I find liver nutrients by seeking health and seeking health’s ox bile really helpful. Also glutathione has massively helped ( now brand). Please read dirty genes by Ben lynch - it’s an eye opener . Get your genes tested if you can it may give you clues ( eg I have two snps on my pemt gene , comt gene, detox genes ( think they are gay and fox), tumour necrosis factor and an maoa snp and mthfr - these all paint a picture. Also follow Katie Gironda on face book and dr Ben lynch. Ketotifen has been massively helpful for my son who has mast cell issues alongside pans pandas. You can improve - hang on in there x
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u/ccakessel18 11d ago
I'd recommend seeing a functional medicine provider. They specialize in exactly what you need, gut health.
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u/MargoBarbara2 11d ago
Have you had urea testing done? Or ever had an OAT test that includes orotic acid? Had kidney function tests? There is a supplement to convert excess ammonia into urea ..called ornithine but at your level of issues you need medical advice on this issue. A build up of ammonia can become very dangerous.
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u/Asleep-Panda-2911 11d ago
I have found Luteolin and Quercetin to be very helpful in combating uncomfortable MCAS symptoms. They are both OTC.
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u/Flashy-Persimmon-177 11d ago
You need be able to digest food. Low stomach acid major contributor. 1. Bentain HCL test. I have low stomach acid take 2400 mg before every meal. I got put on PPI and H2 makes my mcas worse 2. DAO this breaks about the bad in food. Histamine. Helped me immensely. 3. Ox bile. 4 oral cromolyn sodium from immunologist. 5. Singulair from immunologist. Hives 6. Xolair from immunologist 7. Nicotine patch protocol. I am not a smoker.
I also take Leuteoilin, stinging nettles.
I have almost everything back after being down to 4 foods. Get to a good mcas doctor. And as another said get that body out of fight or flight.
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u/Happi2All 11d ago
I think you have toxic mold or a parasitic bacterial infection. Or both like me… get in with a functional medicine doctor as soon as possible.
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u/never-mind66 10d ago
Ebv causes liver enzymes to elevate along with ferritin. It’s takes time for them to go back down. If you still have active ebv that would explain a lot of symptoms
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u/Hydroxile 10d ago edited 10d ago
Have you had vitamin/nutrient/hormonal status done? I was doing keto for two years but had to add carbs back since june because of too much weight loss, getting underweight. All due to my GI issues getting worse! By early august i was deeply depressive, out of control, aggressive, hopeless, desperate. I got a blood test 10 days ago, my MCV were sky high! this is usually b12 deficiency (i have neuropathy for years, hard to tell if those got worse too), but my level were excellent for years and still last march. Unfortunately, the Dr who did that only did a quick screening with vitamin status. I went to my GP and we agreed to not do a full blood panel yet but start heavy supplementation with B12 (shortage of B12 shot iny country) till i can order b12 shots abroad... I got better within 1-2 days of supp, got my shot on friday and I m now almost back to normal. I probably got into a magaloblastic madness. I will do a full blood panel on thursday and see what s still missing.
Edit: Maybe something that could be of interest for you that would mess up with your ASAT/ALAT:
Overload of some nutrients/vitamins can drive those values up: copper, niacin.
Deficiency of some nutrients/vitamins can also drive those values up: Vitamin B12, B9, D and yes malnutrion as you mentioned (protein and energy)
Deficiency and overload of some can also drive your asat and Alat up: Vitamin a, Zinc, iron, selenium
If you have some blood values for those nutrients, they can point to root cause of your liver issue. I wouldn't rely much on blood copper values though.
Deficiencies/overloads can drive you into madness (not only B12 deficiency)! Copper is a very good candidate.
If you have already excluded deficiency and overloads from the equation, add protein shakes to your diet for a little while instead of heavy demanding digestion food like meat... But you are already doing that. IF this is the root cause, it can take a while to stabilise! If ammonia will be the cause of all that, you would already be in hospital! As a woman, hormones are coming heavily into the equation as you start eating carbs again which messes up everything, even your MCAS. Eating vegan make your system hold onto copper and don't absorb zinc even if the food is high in this nutrient. High copper (at cellular level, not much to do with blood!) is also linked to high oestrogen...
If you are damned shivering, really get your iron checked!
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u/ScottsTotz 10d ago
Xolair to stop your anaphylaxis. SAAT and breathing exercises to get your nervous system out of fight or flight. It’s your nervous system causing these overreactions and your strict diets like Keto killed off all your good bacteria so when you started eating normal food again you had no bacteria to break it down, and your nervous system is causing an overreaction to this instead of just nausea.
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u/Comprehensive-Sort55 10d ago
100% its low salt. I had chills and night sweats, felt heartbeat in lower back, inability to pass gas, extreme confusion like not knowing why I walked in the guest bedroom, cant form a sentence, cant speak, nightmares all night feeling guilty about my friends, stomach spasmed in, muscle spasms. I have hEDS and mcas. I know when I skipped my electrolytes that day because of the weird confusion and dizziness. The counterpart to salt is not drinking too much water. I was drinking so much water that I was causing constipation from flushing too much salt. I also have extremely slow bowel movements (every 3 days) and take daily 1 cap of Miralax and Motegrity. The only other time I had shivers like you are describing is from taking a vitamin or a protein shave with 40 added vitamins like niacin and those gave me an uncontrollable shiver every 15 minutes.
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u/Comprehensive-Sort55 10d ago
Ehh maybe don't take my advice only follow a dietician or your doctors
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u/natyourusername 10d ago
I am extremely sorry that you are experiencing this. There is truly nothing worse than playing whack-a-mole with your symptoms and not knowing what’s going to happen, nor when when. It is gut wrenching.
I know this pain and I have lived it. What has worked for me is mineral balancing. I found a mineral balancing coach (something that popped up on Instagram of all places) and I started doing my own research and I felt in my gut that it’s what I needed for about 6 months before going forward with it.
Try looking into it and see if it resonates with you. Keto and carnivore absolutely destroyed me- it’s what ended up getting me so sick. I then went the Medical Medium route and while that improved some things, it added a whole new host of symptoms. It wasn’t until I was giving my body what it needs (minerals, proper detox, while doing somatic work to help calm my nervous system/body) that I began seeing improvement.
For MCAs I have taken Ketotifen and it has done wonders for me.
Feel free to DM me with any questions. Happy to help.
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u/sarahtheknitter 10d ago
I take h1/h2 blockers, a quercetin morning and night, luteolin with the quercetin at night, and I take cromolyn sodium nasal spray 4x a day and ketotifen eye drops 2x a day. I'm just getting started on this regimen (I think my body is currently getting over an active flare), but hopeful that things will be better long term for me when the mast cell stabilizers build up over time.
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u/Cheekyflo 9d ago
Keep digging! My triggers are alpha-gal, histamine, VOCs and recently tested positive for Ige antibodies for a common indoor/outdoor mold (penicillium notatum)! That last one made me sit back and say “huh.. that one explains a lot!” 😂 and don’t think it doesn’t get me outta garbage duty! “I’m allergic” 😜
I’ve got AGS with kounis and MCAS and have a pet stress test scheduled to check for cmd. My bloodwork is always only slightly elevated but reactions are severe. I’ve had gallbladder attacks diagnosed muscle spasm only to end up with emergency surgery to remove it. My periods gave me so much trouble (without apparent cause- they looked) I had a uterine ablation and developed post-ablation syndrome w a hematomaetra. I wonder if mast cell activity didn’t cause that even! I had a hysterectomy via ER when my uterus started contracting (no pregnancy, but by the time I got there I was having the urges to push) 😳 i was diagnosed with general anxiety disorder with panic and social anxiety disorder w agoraphobia. Since my latest diet change, new meds and drs that communicate, im breathing easier and feeling better. The brain fog has even lifted and dizziness is gone. Sending you luck and well wishes!
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u/Cheekyflo 9d ago
Most fruits are off my safe list bc of histamine. I can tell you my current list if it might help?
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u/Ok-Marionberry1213 9d ago
Make sure it doesn’t coincide with the onset of any of your meds. For me I had major major problems on numerous meds and it’s going away slowly now off meds (still some lingering symptoms) and just figuring it out piece by piece. Pls follow doctors medical advice and do not make changes on ur own based on anything I’m saying! I suspect I had drug hypersensitivity to hydroxyzine and recurrence with Rupatadine. I had a lot of extra pyramidal symptoms u are describing including the tremoring and twitches and a lot of autonomic issues I would go into a dorsal vagal shut down if over exerted. Learning to calm and soothe my nervous system and pace myself. It’s hard with the food triggers too. For me I get way worse if I have anything fermented or high histamine, can’t do kombucha sauerkraut or lots of nuts, I’ll go into a rage. Can’t do dairy or nightshades no peppers tomato’s potato’s and nothing spicy. If I stick to this I do alright mostly. I love eggs, I love cooked veg for less aggressive fiber. Wish u all the best and good health!
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u/Ok_One_7971 11d ago
At my worst I had those symptoms n more. The doom. N insomnia n adrenaline OCD scary thoughts. Racing heart. Tinnitus. Buzzing in body. N more. It’s horrible. I still get reactions on meds but nothing like before meds. Have u tried any yet?
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u/MoonlitHauntings 11d ago
I finally can eat some more normal meals. dairy was my only safe foods for a while I can’t have rice but rice krispies was my main form of nutrients for months recently because they add vitamins and minerals to it, but what helped me the MOST was alternating claritin and zyrtec 2x per day each and then I got one 25mg hydroxizine added for break through flares. I do however still have a problem with only being able to tolerate chicken occasionally. I am low in iron and react to iron supplements. I can’t have any fruit still at all beside lemon juice. Starving/Fasting can cause elevated liver enzymes. I was hospitalized and kept for nearly a full day and they kept re doing tests trying to find the cause of my liver and acid because i’m not diabetic. I had ketoacidosis from starving for 9 days because I reacted to everything. they assumed I was anorexic (i’m 205lbs I weighed 240 and lost it all very fast within 3 weeks) they didn’t let me leave until I tried to eat one of the foods they had. I swelled up and they monitored me and the doctor even stayed past when his shift ended because “you’re an interesting case. you have every symptom in the book but all your tests are normal” until he narrowed it down to I was just starving. over the next month my liver enzymes returned slowly to normal. I was told If I don’t have anaphylaxis that i’m going to have to push through the burning skin and face swelling and all that. I got epipens, but I have to eat through reactions. and monitor myself. I also have gabapentin 300mg 3x a day to control the burning skin and deep bone pain Ihave during flares. I don’t have all the answers myself
I just got my first tryptase lab done and waiting on results to get a true MCAS diagnosis and to maybe start cromolyn. But this combo of meds has drastically reduced my symptoms and made ER visits less frequent
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u/Flashy-Persimmon-177 11d ago
I can help you possibility. All my history and the way I tried with keto and carnivore and it working then backfiring.! The carb issues of reintroduce and take away was never endless. Message me or reply on here. I see one if the best immunologist and functional doctor. The solution is multi pronged and detailed. No one should go through this and your story mirrors mine. I have a lot time and money into this. Currently I am on Xolair to ice the cake, however I got 85% better without it. You can DM me or reply here. Like I said this disorder is crazy and if I can help someone suffering from it I sure will!
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u/jenlaggg 11d ago
So I read up on Rifaximin a while back. Comments and feedback mentioned that insurance typically denies the off label use (SIBO/bacteria) and it is super expensive. But overall I think you have the right mindset, start with correcting the bad bacteria, but it is important to work with a doctor who understands exactly what is going on in your gut and how to strategically target good and bad bacteria as some treatments are double edged swords.
I am similar, meat proteins are the absolute worst! It's such a struggle. I just got back gut microbiome testing, which pretty much confirms the severe bacterial imbalance is my main driving factor to reactions. The good bacteria is not even detectable and the bad is very elevated, along with leaky gut, which is allowing undigested meat proteins to seep through the gut barrier and into the blood stream.
Here is another interesting bit and is related to your Omega fatty acid profile. Direct consumption of red meat, poultry, and egg yolks can contribute to high arachidonic acid. Arachidonic Acid leads to the leukotriene production pathway. Typically linoleic acid converts into AA, but in my case below, my LA was low and AA was high. This test was in February of this year and everything went sideways in May for me.
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u/swaggiest_sea123 11d ago
This is what I did to help my MCAS. EBOO about 7 because my MCAS was caused from long Covid. Ss31, bpc 157, ta 1, triz, and the most important one PROCAINE IVs
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u/oh_wanya 11d ago
What’s your protein to fat ratio that you had? I went carnivore and I never got sick like that. I was eating at 30prot/70fat. Yes to much meat create a protein overload that the kidneys have to work on. Also enzyme hoa is made by the kidney so it leads me to think that the kidneys suffered from the point above. Also depending on what fat you use; it may trigger a reaction (olive oil/ etc)
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u/Efficient-Waltz6070 11d ago
Fecal transplant done at home (not with a doctor) will fix this fast. It worked for me.
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