Endo and MCAS

[Bubs27]

I read a post on here recently whereby somebody said they've been diagnosed with MCAS. I think I may have this also, and there's strong evidence that it's linked to endo, hashimoto's and asthma, all of which I have. Has anyone had a formal MCAS diagnosis? How did you get the diagnosis and how is it being treated?

[Moon_maiden]

Never heard of this and looked it up. It does make you wonder. I’ve had skin issues for years and antihistamines on and off. I did take them last year for a time to see if this was involved, I think it helped for a while, might try it again.

Have you suggested this to GP?

[Bubs27 in reply to Moon_maiden]

Hello, no not mentioned to GP because I tend to get dismissed as being 'that age' and have stopped wasting my energy! I think I'll try speaking to my consultant but was wondering how a diagnosis is given. I have regular urticaria, breathlessness, palpitations, fainting, brain fog and many more of the symptoms. I also have endo on my liver, diaphragm and lung, so am a bit of a mess inside! If taking anti- histamines could improve things I'd happily take them.

Did you find that you got any relief when you took them?

[Moon_maiden in reply to Bubs27]

I think so, have to try it again though. I’m all for experimenting at the moment.

Looking at info earlier there is a blood test.

I know my histamine can be high due to skin/ hay fever. I’ve used medicheck in the past, might see what they do in the way of tests.

You’ve been through it that for sure, what did they do for endo elsewhere? The fact the consultant checked is great.

[Bubs27 in reply to Moon_maiden]

I'm due a blood test to check ALTs and thyroid so I'll ask if they can add this to the list - may as well! Like you, I'm at the point where I'll try anything. I had my 6th lap in January but they couldn't remove ovary because it's adhered in ovarian fossa and there's artery involvement. So I'm still in pain and awaiting a date for surgery no.7 - oophrectomy. I hate taking so many painkillers, but have tried so many alternatives over the years which don't really do much. If there's a fundamental reason for endo pain, i.e. mast cells misbehaving, then wouldn't it be wonderful to just take antihistamines?! I'm a great believer in treating the cause instead of the symptoms.

Do you have asthma also? There seems to be a definite link between endo and a multitude of autoimmune conditions.

[Moon_maiden in reply to Bubs27]

Six laps so far, wow, not sure I could. You’ve really been through things, that’s incredible perseverance. Get them to add Vit D and B12 to the blood test as well. The doctor will need to authorise additional things. I must admit my own GP had no issues adding things that I suggested last year. Even Cortisol, mainly to prove it wasn’t anxiety, levels were normal.

Some people are saying endo could be autoimmune. In Edinburgh they arresting a drug originally developed for cancer for use in Endometriosis. They think endo cells may well react like cancer cells, it has worked on mice in studies. They are currently testing on women. Haven’t seen any results come out yet. I mentioned it to the consultant, but he doesn’t prescribe off licence and thinks the Zoladex is working (not doing anything for pain to me)

I’m of the opinion that it could be autoimmune as it definitely attacks its own body. I would try the drug if I could, the side effects seem minimum in comparison with some, and Zoladex is used as part of cancer treatments as well. I have read their are links that if you have endo likely another autoimmune issue.

They’ve considered asthma in the past, registrar at ENT last year said I sounded a bit breathless. A few years or so they gave an inhaler and O tried again last year, but didn’t do much. I’m not convinced, there are issues that are yet to be resolved. A different registrar said there were small polyps in nose, and if I run it can feel like the airway gets restricted but at back of throat not lungs as such. They gave some medication to try for nose feeling blocked, but that was just before lap, then afterwards I felt no better and didn’t feel up to trying new things, steroids, so it’s just sitting there.

My ovaries don’t show on ultrasound and he could only see one at lap as uterus was too distorted. Chances are endo superficially is lingering as well where he couldn’t get to.

The only way I’ve ever got answers is to go ‘off piste’ so to speak, which possibly infuriates GPs, but it’s their own fault. 😂

[Swinkie]

Hi Bubs27

Some of your symptoms could be attributed to Mcas.

I've been diagnosed with MCAS, but was very lucky to get a diagnosis via my hospital consultant. It's very difficult to get diagnosed.

Check out the MCAS page on Facebook.

There's a Dr called Dr Seravanety I think, in London that takes private patients.

My Treatment is ;

Certirazine (H1) Anti Histamine

Raitadine (H2) ..this is now banned

Sodium chromoglycate

Low dose Naltrexone.(private prescription)

Following a Low Histamine Diet.

Check out The Low Histamine Chef..

Anything that reduces inflammation is good.

Hope this helps!

[Pam2017 in reply to Swinkie]

How long have you been on this treatments any side effects as I have terrible palpitations food intolerance

Can you eat any foods now

Did you see private Doc

On anti histamine diet now

Loss of weight & SIBO to add to my problems with Lyme

Thanks

[Swinkie in reply to Pam2017]

I have to be very careful what I eat.

There's no quick fix.

You should probably do an elimination diet, check out the Low Histamine Chef, also look at Salycite and oxylate intolerance.

Dr Serevaneti is the only Mcas specialist I know of, but theres an Mcas group on Facebook. NHS is pretty useless re MCAS I'm afraid. Their Allergy testing isnt really helpful.

Are you a patient of Dr Sarah Myhill?

I think her books are closed but her website is very good..drsarahmyhll.co.uk.. I think

Maybe look at Thyroid and Adrenal tests... privately...

Seeing Sue Armstrong next week.. she's a Homeopath, functional medicine vet and nutritionalist near York..Zoom consultation ...done wonders for my friend and also my dog!

Hope this helps..sending healing hugs..xx

[Potsiegal]

Getting an MCAS diagnosis is tricky St Thoas Hospital Dr Grattan's team can be helpfut but with COVID19 at the mo your best best is quercetin and vitamin c, dietary changes and getting either H1/H2 blocker or Montelukast.