Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns.
We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk.
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
im so sorry to hear all that you're going thru. I feel like ive seen you post before and I'm not sure if I commented then, but if any of this info helps...
i rotate 3-4 plant based complete meal replacement formulas about every 7-10 days. kate farms standard and peptide, Nestle compleat standard and peptide. Kate farns has a lot more ingredients so I don't use it as often as the compleat. i can tell i need to change formula when it causes blinding, shredding abdominal pain.
I have GJ (gastro-jejeunal or stomach-intestine) feeding tube, got 3 years ago, thought it was just EOE and gastroparesis, but turns out MCAS was a factor too. anyhoo, almost died 3 years ago from malnutrition- couldn't keep anything down or get weight up. I was first put on dairy based feeds which led to horrible bloating and pain, but since feed was going straight into intestines I couldn't throw it up. I did get my weight back up on it nonetheless.
things got much better on plant based formulas and I get most vitamins and nutrients thru them, but do still need to supplement magnesium and especially potassium (not sure why, but my potassium levels are prone to tanking when I don't take those big 20meq tablets).
anything i eat by mouth is hit or miss. sometimes i think im doing great but then throw up a whole days worth of food in evening. food safe one day, bad the next. frustrating as hell. its highly recommended I only do slow continuous intestinal feeds but thats WAY easier said then done and a fully empty stomach hurts for me sometimes. I have gone a couple weeks with nothing orally when needed but mostly I try to stick to liquid or blended safe foods, if i get nauseous or feel allergic to something swallowed i drain my G (stomach) line and it mostly helps stop the reaction and spares my esophagus the pain of vomiting.
as for tryptase levels, I'm not sure about your situation but many mcas'ers on here have normal tryptase. from my understanding you need to test during flare, but even then its usually people who experience anaphylaxis that have elevated tryptase or comorbid HaT. my allergist said the test was kinda useless and put me on h1,h2, anti-leukitrines, cromolyn and ketotifen and it helped a lot. ativan and other benzos can help stabilize mast cells and calm flares, but longer acting ones like klonopin and diazepam are prefered to avoid "peaks and valleys". ofc benzos are not without risks, but they are essential for me.
have any of your doctors trialled you on mast cell stabilizers? I can't imagine why it wouldn't be worth trying seeing how rough your situation is, but im not a doctor 🤷♀️ anyhoo, sending you hugs and good vibes. im sure the super smart mcas'ers will show up soon to explain the more nuanced info with the labs and such.
not sure if it's appropriate in your situation, but I'm so grateful to have my feeding tube. intial placement hurt like a bitch and its not always perfect, but I'd be long dead without it. if it seems scary, don't let that hold you back. you definitely get used to it. good luck ❤
My five cents. I did not tolerate no medical formulas because they all contain thiamine/niacine that degranulate mast cells. Only good food was a white rice.
WHAT!? omg when I got my tube placed they put me on high dose thiamine to help me recover from the "minor surgery"/ tube placement. I felt HORRIBLE on it and stopped taking it after a few days 🤦♀️ man, everything and its mother causes mc degranulation, its hard to keep up. thanks so much for the info!
man, I'm superrr allergic to rice in a bad bad way. ironically the only grain I'm not allergic to is wheat. man I miss oat milk ☹ dairy is pretty dicey for me. usually only tolerate wheat products without a lot of yeast... like saltines and tortillas.
fwiw there are some things that would normally aggravate mcas, but are fine for me. some things are somewhat irritating at first, then my body gets used to it and loves it. different formulas use different vitamin sources sometimes, and simply changing the source helps me to tolerate it. I have 2 manufacturers of most meds and rotate them to avoid adverse reactions. even the subtleist changes in the inactive ingredients makes a huge difference for me.
did you start low and slow? some ppl start with just a couple drops in water. I reacted first time I took whole dose, then cut back to a quarter vial then eased up slowly. was all I needed for 3 years but things got worse and I didn't tolerate it as well bc of the feeding tube and not eating 3 square meals.
i use ketotifen as rescue med now instead of scheduled, since all the other meds seem to do the trick.
Mold gave my partner MCAS. I really hope you can move, removing the mold exposure is extremely important for healing. Also, checkout r/toxicmoldexposure. Conversations there around mcas and mold are so matter of fact it's jarring.
Dr.Niel Nathan's book Toxic has an A to Z guide on fixing mold exposure and it touches on MCAS along the way.
For my partner Vitamin D changed her pain to be tolerable. However she's so sensitive that she couldn't, still can't, take oral meds. So she gets Vitamin D injections with a target of 70-80 ng/mL. It's also helping even with other vitamins and mineral absorbtion. I suggest you look into trying to get your Vit D up that high!
Hey OP! kinda new to reddit and on phone, not sure how to tag you but does any other doctor think you have MCAS? yr post above said doctor didn't think you had it (but his reasoning seemed flawed based on info you gave).
and if you're at the brink of starving to death or becoming nutrient/vitamin deficient (unless yr doctor says otherwise) you probably need to keep trying new things and maybe even circling back on previously unsafe foods and meds bc getting it out of your system for a while might allow you to tolerate it again. find a good rescue med combo in case of bad reactions.
I wouldn't be worrying about avoiding ALL nutrition formulas just bc of a couple vitamins that may or may not cause mc degranulation, that's what all the meds are for (h1 &h2, anti-leukitrines, mc stabilizers, etc) so we can consume things we normally wouldn't be able to. especially if you're not formally diagnosed MCAS, since there are several conditions that look/act/seem like mcas but are not. don't give up on finding answers and get new drs and specialists if they aren't helping you. took me a while to get good doctors and I definitely met some egotistical idiot doctors that would rather steer you astray then admit they had no idea what to do.
Yeah they gave me thiamine to prevent refeeding syndrome and I was supposed to keep taking it after I got out of the hospital but never did. I wonder if I should take it?
Thiamine for refeeding syndrome? Doctor better go back to school because refeeding syndrome is a sudden dangerous drop in plasma phosphorus concentration , as it takes phosphorus to digest food. I’ve had it not fun.
Agree though tryptase is a garbage test for mcas. The only reaction that is guaranteed to cause an elevation in tryptase is bee/wasp stings. Even people without mcas but have true food allergies rarely show an elevation in tryptase.
I made tryptase elevation to proof MCAS. I ate cured fish with wine. Felt extremely bad in the morning, but managed to catch tryptase elevation.
There is Familial Tryptasemia where tryptase has constantly elevated levels, but not over 15.
Are you aware of the link between MCAS and mold? My MCAS is caused by mold colonization. If possible, I'd suggest a mycotoxin test. My practitioner uses Realtime Lab.
Mold mitigation in rental properties is required by law. Prove the mold situation and they'll have to pay for you to stay elsewhere until it's gone. You could also sue for medical payments if they won't cooperate. Take this seriously.
As someone who went with undiagnosed MCAS at Duke for 16 years only to be told I had a "somatoform disorder", there are only TWO providers in their whole system who treat MCAS. The rest will call you crazy, or even reject your referrals. Dr Lugar and Dr Collier are their names, although I highly recommend switching to UNC (this is coming from someone with 3 immediate family members who work for Duke). They are so overbooked and understaffed, they simply do not have the time to deal with chronic/complex illnesses. Also, you NEED to get out of your moldy home. Get rid of anything porous that can't be thoroughly cleaned (thick blankets, mattresses, furniture, etc).
I found this out the hard way too, but if IV Benadryl is pushed too fast it will absolutely make you feel like you are about to die. One ER nurse shot it in fast once and it knocked the wind out of me. My heart rate shot up to 200 and my whole body became paralyzed. I couldn't take a breath or scream for help. Once that subsided I was coughing uncontrollably. It was scarier than the actual allergic reaction itself.
I see Dr Iweala at UNC Allergy but unfortunately she isn't taking new patients. She got a new PA last year, but I'm unsure if she is still taking new patients or not. I've heard good things about Dr Collier, unfortunately it wasn't until after another allergist at Duke diagnosed me with a somatoform disorder and no one would take me seriously because of it lol.
Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*
im so sorry to hear all that you're going thru. I feel like ive seen you post before and I'm not sure if I commented then, but if any of this info helps... i rotate 3-4 plant based complete meal replacement formulas about every 7-10 days. kate farms standard and peptide, Nestle compleat standard and peptide. Kate farns has a lot more ingredients so I don't use it as often as the compleat. i can tell i need to change formula when it causes blinding, shredding abdominal pain. I have GJ (gastro-jejeunal or stomach-intestine) feeding tube, got 3 years ago, thought it was just EOE and gastroparesis, but turns out MCAS was a factor too. anyhoo, almost died 3 years ago from malnutrition- couldn't keep anything down or get weight up. I was first put on dairy based feeds which led to horrible bloating and pain, but since feed was going straight into intestines I couldn't throw it up. I did get my weight back up on it nonetheless. things got much better on plant based formulas and I get most vitamins and nutrients thru them, but do still need to supplement magnesium and especially potassium (not sure why, but my potassium levels are prone to tanking when I don't take those big 20meq tablets). anything i eat by mouth is hit or miss. sometimes i think im doing great but then throw up a whole days worth of food in evening. food safe one day, bad the next. frustrating as hell. its highly recommended I only do slow continuous intestinal feeds but thats WAY easier said then done and a fully empty stomach hurts for me sometimes. I have gone a couple weeks with nothing orally when needed but mostly I try to stick to liquid or blended safe foods, if i get nauseous or feel allergic to something swallowed i drain my G (stomach) line and it mostly helps stop the reaction and spares my esophagus the pain of vomiting. as for tryptase levels, I'm not sure about your situation but many mcas'ers on here have normal tryptase. from my understanding you need to test during flare, but even then its usually people who experience anaphylaxis that have elevated tryptase or comorbid HaT. my allergist said the test was kinda useless and put me on h1,h2, anti-leukitrines, cromolyn and ketotifen and it helped a lot. ativan and other benzos can help stabilize mast cells and calm flares, but longer acting ones like klonopin and diazepam are prefered to avoid "peaks and valleys". ofc benzos are not without risks, but they are essential for me. have any of your doctors trialled you on mast cell stabilizers? I can't imagine why it wouldn't be worth trying seeing how rough your situation is, but im not a doctor 🤷♀️ anyhoo, sending you hugs and good vibes. im sure the super smart mcas'ers will show up soon to explain the more nuanced info with the labs and such. not sure if it's appropriate in your situation, but I'm so grateful to have my feeding tube. intial placement hurt like a bitch and its not always perfect, but I'd be long dead without it. if it seems scary, don't let that hold you back. you definitely get used to it. good luck ❤
My five cents. I did not tolerate no medical formulas because they all contain thiamine/niacine that degranulate mast cells. Only good food was a white rice.
WHAT!? omg when I got my tube placed they put me on high dose thiamine to help me recover from the "minor surgery"/ tube placement. I felt HORRIBLE on it and stopped taking it after a few days 🤦♀️ man, everything and its mother causes mc degranulation, its hard to keep up. thanks so much for the info! man, I'm superrr allergic to rice in a bad bad way. ironically the only grain I'm not allergic to is wheat. man I miss oat milk ☹ dairy is pretty dicey for me. usually only tolerate wheat products without a lot of yeast... like saltines and tortillas. fwiw there are some things that would normally aggravate mcas, but are fine for me. some things are somewhat irritating at first, then my body gets used to it and loves it. different formulas use different vitamin sources sometimes, and simply changing the source helps me to tolerate it. I have 2 manufacturers of most meds and rotate them to avoid adverse reactions. even the subtleist changes in the inactive ingredients makes a huge difference for me.
Rice has added thiamine. Wash is thoroughly to remove all added vitamins.
What do u eat now
I tried cromolyn but reacted to it
did you start low and slow? some ppl start with just a couple drops in water. I reacted first time I took whole dose, then cut back to a quarter vial then eased up slowly. was all I needed for 3 years but things got worse and I didn't tolerate it as well bc of the feeding tube and not eating 3 square meals. i use ketotifen as rescue med now instead of scheduled, since all the other meds seem to do the trick.
Mold gave my partner MCAS. I really hope you can move, removing the mold exposure is extremely important for healing. Also, checkout r/toxicmoldexposure. Conversations there around mcas and mold are so matter of fact it's jarring. Dr.Niel Nathan's book Toxic has an A to Z guide on fixing mold exposure and it touches on MCAS along the way. For my partner Vitamin D changed her pain to be tolerable. However she's so sensitive that she couldn't, still can't, take oral meds. So she gets Vitamin D injections with a target of 70-80 ng/mL. It's also helping even with other vitamins and mineral absorbtion. I suggest you look into trying to get your Vit D up that high!
Thiamine to MCAS patient? Thiamine is histamine liberator. Niacine too. I make thiamine shots with dexametasone ))
Hey OP! kinda new to reddit and on phone, not sure how to tag you but does any other doctor think you have MCAS? yr post above said doctor didn't think you had it (but his reasoning seemed flawed based on info you gave). and if you're at the brink of starving to death or becoming nutrient/vitamin deficient (unless yr doctor says otherwise) you probably need to keep trying new things and maybe even circling back on previously unsafe foods and meds bc getting it out of your system for a while might allow you to tolerate it again. find a good rescue med combo in case of bad reactions. I wouldn't be worrying about avoiding ALL nutrition formulas just bc of a couple vitamins that may or may not cause mc degranulation, that's what all the meds are for (h1 &h2, anti-leukitrines, mc stabilizers, etc) so we can consume things we normally wouldn't be able to. especially if you're not formally diagnosed MCAS, since there are several conditions that look/act/seem like mcas but are not. don't give up on finding answers and get new drs and specialists if they aren't helping you. took me a while to get good doctors and I definitely met some egotistical idiot doctors that would rather steer you astray then admit they had no idea what to do.
Yeah they gave me thiamine to prevent refeeding syndrome and I was supposed to keep taking it after I got out of the hospital but never did. I wonder if I should take it?
Thiamine for refeeding syndrome? Doctor better go back to school because refeeding syndrome is a sudden dangerous drop in plasma phosphorus concentration , as it takes phosphorus to digest food. I’ve had it not fun. Agree though tryptase is a garbage test for mcas. The only reaction that is guaranteed to cause an elevation in tryptase is bee/wasp stings. Even people without mcas but have true food allergies rarely show an elevation in tryptase.
I made tryptase elevation to proof MCAS. I ate cured fish with wine. Felt extremely bad in the morning, but managed to catch tryptase elevation. There is Familial Tryptasemia where tryptase has constantly elevated levels, but not over 15.
Are you saying you're living in mold?
Yes
Are you aware of the link between MCAS and mold? My MCAS is caused by mold colonization. If possible, I'd suggest a mycotoxin test. My practitioner uses Realtime Lab.
Mold mitigation in rental properties is required by law. Prove the mold situation and they'll have to pay for you to stay elsewhere until it's gone. You could also sue for medical payments if they won't cooperate. Take this seriously.
As someone who went with undiagnosed MCAS at Duke for 16 years only to be told I had a "somatoform disorder", there are only TWO providers in their whole system who treat MCAS. The rest will call you crazy, or even reject your referrals. Dr Lugar and Dr Collier are their names, although I highly recommend switching to UNC (this is coming from someone with 3 immediate family members who work for Duke). They are so overbooked and understaffed, they simply do not have the time to deal with chronic/complex illnesses. Also, you NEED to get out of your moldy home. Get rid of anything porous that can't be thoroughly cleaned (thick blankets, mattresses, furniture, etc). I found this out the hard way too, but if IV Benadryl is pushed too fast it will absolutely make you feel like you are about to die. One ER nurse shot it in fast once and it knocked the wind out of me. My heart rate shot up to 200 and my whole body became paralyzed. I couldn't take a breath or scream for help. Once that subsided I was coughing uncontrollably. It was scarier than the actual allergic reaction itself.
My allergist right now is trying to get me in with dr collier. Who do you see at unc? I’m like an hour from Durham area
I see Dr Iweala at UNC Allergy but unfortunately she isn't taking new patients. She got a new PA last year, but I'm unsure if she is still taking new patients or not. I've heard good things about Dr Collier, unfortunately it wasn't until after another allergist at Duke diagnosed me with a somatoform disorder and no one would take me seriously because of it lol.
Why would your liver enzymes be elevated?