MCAS - Any advice

[HateLongCovid]

My daughter since catching covid in 2022 developed reactions to a lot of foods. When she caught covid again this year the allergic reactions have really ramped up. There are only a couple of foods she can safely eat and has started to react to prescribed medicine. We believe she has MCAS mast cell activation syndrome. Anyone else struggling with this?
Any advice, Doctor recommendations would be greatly appreciated . BTW we are in the UK.

@HateLongCovid - Hi there! Just noticed your post! I was told last week by a urologist he thinks I have mast cell activation disorder, so he did a blood test on me....he has also started me on ketotifen! I am awaiting the results of my blood tests!

He has also sent me to a rheumatologist as my mast cell issues are related to hypermobility/potential EDS.

Does she have any urology/rheumatic symptoms that she could see one of these people about it?

Hi there thank you so much for answering my question. My daughter has been having bladder issues so a urologist is someone we could try and seek help from. Are you in the UK? Would you be happy to tell me the name of your urologist? Did you see them privately or through the NHS?

@HateLongCovid - yes of course! Happy to help.

His name is Vik Khullar, he is in London

I see him privately, I don't think you would have much chance of seeing him on the NHS.

I waited almost 4 months to see him privately!

@WitheringTights000 Thank you very much. It seems most of these doctors that are acknowledging MCAS are private doctors whom are really busy or on the verge of retiring. Most of the NHS Doctors don't seem to even accept or know what MCAS is. 🙄

I have MCAS flared up by covid and am doing really well now. You're better off seeing an MCAS specialist, though they are only private. Mine is Dr Deering, he's incredible. I've written a blog with all the links to my treatment that may be helpful
https://beetsnotbombs.wordpress.com/2021/10/17/my-long-covid-journey-so-far/?preview=true

@Greengranma . Hi there, thank you so much for getting back to me and sending me a link. I will have a good read through. Unfortunately we have tried to get an appointment with Dr Deering but he is not currently taking any more patients 😟 .

@Greengranma . It's great to hear a message of hope though. Thank you

@HateLongCovid hey there! I think i have the same thing! What sort of symptoms does she get?
ive been having rashes ? On my face and chest and i seemed to have a reaction to 2 different prescribed meds.
im so lost because i dont know what to do next. Did u go to ur gp asking to be referred? X

@Greengranma gld to hear your better :) what has helped you? X

I’m so grateful for this information @Greengranma .

Hi there, as well as a rash she'll get a burning feeling in her body and often feels more unwell. She says it feels like her body is being poisoned. Medication she used to take with no problem now causes her mouth to burn and brings on burning sensations and rashes. She's down to just a couple of safe foods. It's a nightmare. Most GP's don't seem to know about MCAS unfortunately 🙁

@HateLongCovid i get that burning feeling also!!! I had a burning mouth when u tried beta blockers and the rash appeared and now its not going. Its like triggered a major immune response. Im gonna mention it to my dr. Im in the waiting room about to see him! Is ur daughter on a low histamine diet? Xx

@Starrr123 Yes my daughter is trying to follow a low histamine. There is a good website called Mastcell 360 which is very helpful with which foods you can try. The lady who made the website suffers from MCAS herself and has made a lot of progress. Definitely worth a look. How did you get on with your GP?

Low histamine diet is so so tough.

I am finding that foods that are low in histamine, irritate my gut as I also have SIBO.

Does anyone else find this?

My daughter has IBS and that makes it extra hard as well I agree.

@HateLongCovid ok thankyou ill take a look :)
my gp said if these tablets dont work then hell send me to a long covid specialist. He said its some sort of histamine issue but covid does that. He said the medication has just annoyed my immue system and hopefully should settle. So fingers crossed whem i go on holiday im not too bad. What tablets does ur daughter take for it xx

@HateLongCovid - yea the IBS is awful, makes things extra challenging I agree. I feel like my stomach reacts to every single food right now, no joke.

I would still if you can go and see the urologist about your daughters bladder. Not to worry you, but mine got really bad whilst under the care of a private urologist who had no clue about mast cells.

Vik Khullar scanned my bladder and the lining is inflamed, so there is damage there to the wall of my bladder which is worrying

@WitheringTights000 how are you getting on now? I’ve been under Prof K for the same thing but my bladder is still going wild - don’t think the antihistamines have helped. I’m at a loss

@Rainbow2116 -thanks for your message. I've been on sodium cromogolate for about 1 month, I'm up to 3 times a day now, 30 mins before food....

What are you on medication wise?

I feel like low histamine diet is impossible also! Like I cannot do it

@WitheringTights000 same re diet!! I’m on Ketotifen and he’s now asked me to try Cimetidine for the bladder, which I will collect next week. Has yours helped your bladder pain?

@Rainbow2116 - I tried ketotifen but it made my eyes dry, what's the one you are collecting next week? Is it a mast cell stabiliser? No it hasn't helped my bladder pain 😡😡

@WitheringTights000 same re the dry eyes! It’s an histamine H2 receptor antangonist. I don’t think my problem is histamine thought. God knows whether it’s an embedded infection, OAB, IC. I’m at a complete loss with it all

@Rainbow2116 - do you want to continue on private message?

@WitheringTights000 yes! Please Send me one first as I’m not too acquainted with it yet 😂

I sent u one :)