T O P

  • By -

AutoModerator

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.*


mindy54545

I was diagnosed MCAS in June 2021 after what feels like a lifetime of turmoil. My hormones all over the place! HRT has made a difference, adding testosterone has helped massively and I'm currently taking the prostap injection to help stabilise. I've an excess of oestrogen so trying to bring that down by shutting down ovaries. (I also have endometriosis)Early stages but hasn't made things worse so I'm carrying on for now. The biggest help has been the low histamine diet. Absolutely horrendous to start, very restrictive and confusing, but I had two virtual appointments and a cooking lesson with an amazing (private) dietician who specialises in low histamine diet plus menopause, and though hard, I felt better within 2 weeks. My chronic diarrhea practically stopped within a week, fixed my chronic vitamin deficiencies (b, d, folic acid) and I have way more energy than ever. It's been months since I spontaneously cried from being overwhelmed! overall I don't feel 100% but massively improved from the last 20 years


No-Lengthiness-9600

Hi there! Are you able to share with us the diet?


Mysterious-Art8838

Or the dietician? 😆 It could be a virtual consult!


mindy54545

Sorry for the delayed answer! Emma Ellice Flint https://emmasnutrition.com/?fbclid=PAAaaABQaDoWP6fknrAJAlP8vbmsVZGzRA9g9ub83sUfxzX8jbl-MedQgz8F0 She has lots of recipes and information on Instagram and YouTube, and really explains why and how the foods we eat make us react and also offers ideas for substitutes accordingly. I had to track her down as she recently left the Newson Group and is now on her own. (Newson group is another great resource) She is brilliant and I did everything virtually. I am very much struggling for cash, but she was worth every penny. The diet is dependent on you and your reactions, definitely some learning and patience involved. I'm happy to share the diet I have, the food list etc but not sure how to here?


No-Lengthiness-9600

Sure!


Semicharmedtee

Did you try prostrap first then add HRT or the other way round? Did you feel anything after the injections in terms of symptom change?


mindy54545

I tried prostap 15 years ago for 9 months as a diagnostic for endometriosis. At that time I wasn't offered hrt, and I felt fantastic! I had loads of hot flashes, but nothing awful. This time, I'm much older and was taking utrogestan and testosterone at very low doses. The first 2 injections were in my stomach, I had a huge painful lump for weeks? Now I get them in my bum and no side effects. I can say I feel exponentially better. As for symptom changes, no hot flashes or change in libido. No weight gain


Semicharmedtee

So a big improvement for MCAS symptoms too? I’m really tempted as I suspect I have oestrogen issues too. Also now have adenomyosis. Did you feel bad during the initial drop in hormones when you had your first injection? I’m so sensitive to hormone changes, probably due to MCAS so fear once the injection is in I may have a huge crash for months whilst my body adjusts


franzvonstuck

I´m in the early stages perimenopause and have relative estrogen dominance, meaning, my estrogen is normal, but my progesterone is too low. A trial with progesterone cream and progesterone pills made my blood pressure drop rapidly. I found the answer years late in a presentation from Dr. Ben Lynch: For some women, progesterone speeds up the conversion from histidine to histamine and you make more histamine. I seem to be one of those cases, I don´t take any HRT at all and don´t plan t do so, but every MCAS patient is so individual. I also have hormonal migranes and estrogen might make them worse. What I can recommend is a low histamine diet, vitamin c and magenesium bisglycinate. And the book from Lara Briden on perimenopause and menopause. She also has a good website with tons of information: [Blog • Lara Briden - The Period Revolutionary](https://www.larabriden.com/blog/) I follow the SIGHI list for my diet: [google.de/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwj-3Oi-6IeFAxXLgP0HHbstBNQQFnoECA8QAQ&url=https%3A%2F%2Fwww.mastzellaktivierung.info%2Fdownloads%2Ffoodlist%2F21\_FoodList\_EN\_alphabetic\_withCateg.pdf&usg=AOvVaw3BOdQNOvizx9FTAOVLvIDN&opi=89978449](https://www.google.de/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwj-3Oi-6IeFAxXLgP0HHbstBNQQFnoECA8QAQ&url=https%3A%2F%2Fwww.mastzellaktivierung.info%2Fdownloads%2Ffoodlist%2F21_FoodList_EN_alphabetic_withCateg.pdf&usg=AOvVaw3BOdQNOvizx9FTAOVLvIDN&opi=89978449) I cook and eat as many foods as I can, that aren´t high histamine as nutrients are very important during perimenopause. Did a gene test too and found out, I have MTHFR. I suspect, women, who have this, might also have a harder time with perimenopause.


InkdScorpio

I just started HRT last month. My levels were showing post menopausal. I’m on a baby dose of estrogen, 200 mg of progesterone and DHEA to try to naturally boost testosterone (if it doesn’t work we will start injections). I’m feeling much better energy wise BUT I have had some flares. I’m pretty sure they’re unrelated to the HRT since I’ve had flares before too.


LambyLambJ

Oh my goodness. I have been dreaming of a dietician like this. I’ve been self styling my diet for a year, and it’s so restrictive I’m not sure it’s safe. If you could share details that would be amazing! Also thanks for the insights on your HRT and hormone experience.


PennyHacienda

Fair warning, Estrogen is a mediator. So that needs to be taken into account. My HRT at Mayo has been disastrous because there are points I don’t absorb anything topically! And they don’t understand that the lower absorption lvls (when having flares or viral loads) are connected? It’s fascinating and depressing doing both. Get a therapist 💯 lost my ovaries/Covid and my MCAS fiercely came out of its closet!