Which type of specialist best able to diagnose MCAS?

Hi, I'm new to the site. I think I have MCAS and am in process of being investigated via NHS. Have been trying to gather as much info as possible. Which type of specialist is most able to diagnose MCAS. So far have seen gastroenterologist and hepatologist and have just been referred for immunologist, still no diagnosis but am having loads of tests. My main triggers seem to be chemical and food-related.

[Jess-UKMasto Partner]

Hi Grenadine, with any mast cell disease the specialty is often not the determining factor as to whether a doctor can and will make a diagnosis of MCAS. It's more determined by whether they have an interest in it and have taken the time to learn-- and if their bosses are happy with them devoting some of their clinic time to MCAS. There are dermatologists, immunologists, allergists, haematologists, gastroenterologists and urogynaecologists (some private, not necessarily on the NHS) whom we know have diagnosed patients. The key is to find someone who is willing to look at all your symptoms, perform tests to see if your mast cell mediators are raised, and see how you respond to treatment with basic MCAS meds. Let's hope your tests and the visit to the immunologist are a step forward, but do let us know!

[Hidden in reply to Jess-UKMasto]

Thanks Jess, will keep you posted. If anyone has found any helpful specialists who are familiar with MCAS in the north West of England please let me know.

[Hidden in reply to Hidden]

Also what medications have people found helpful for MCAS? So far i have found Quercetin really helps but it gives me a headache so am unable to tolerate it. Also DAO with meals but it is expensive.

[Garnet67 in reply to Hidden]

Hi, Nalcrom, zaditen and Fexofenadine have helped me, low histamine diet and look at gluten / dairy/ fodmap to consider. Wish you success.

[Hidden in reply to Garnet67]

Thank you, will do!

[Woodpecker2021]

Jess gave me a couple of names in the Midlands (Dr Bethan Myers, NHS, but will only see you if you live in Leics and Dr Alexandra Croom who I saw as a private patient at the Spire Hospital in Nottingham). Still had to wait 6 months but I was diagnosed with familial alpha hypertryptasemia. I get a whole raft of symptoms triggered by any synthetic chemical/smell and particular foods (gluten, dairy, rapeseed oil and any synthetic ingredient like MSG, sweetners etc). Removal of gluten has been a great help and I stick to a mainly vegan diet with freshly prepared natural food. I started in October 2020 on half a tablet of ketotifen (zaditen) for 7 weeks (before bed) because of side effects on one full tablet and then moved to one tablet and I am now able to tolerate it. It hasn't cured me but I have had some improvement. Ketotifen is a mast cell stabiliser but it doesn't suit everyone. My cousin who was diagnosed with MCAS can't take it. The chemicals are a significant issue as they are rife in today's society and impossible to avoid (air fresheners, anti-bac products, perfumes, scented candles, cleaning products .... the list goes on). Online shopping and living a secluded life helps. Good luck and I hope you get some answers and solutions soon.

[Tynderbox in reply to Woodpecker2021]

Whilst living in the West Midlands I was referred to the Queen Elizabeth Hospital by my GP due to a long history of serious allergies primarily to antibiotics (but also to foods and other random irritants) and saw Professor Peter Lane. After taking a detailed history he said he believed I had MCAS, and was quite passionate and well informed about Mast Cell Disorders.

Unfortunately, as he had also become quite interested in finding out if I also had Ehlers Danlos he missed explicitly explaining the MCAS diagnosis back to my GP in his letter, and focused on his referral on to Rheumatology because having MCAS might mean I have ED and/or POTs - but skipped over actually using the reason why he wanted to explore this! So, I unfortunately still don't have that important note flagging MCAS on my GP record, so I have no epi pen, and live life a little on the edge with only anti-histamines to try and mitigate a reaction. I now have only a couple of first and second line antibiotics that I can take without experiencing severe reactions, and just because I took it once and was ok, sadly doesn't mean I can take it again without needing a trip to A&E.

Once I pandemic settles I plan on returning to my GP and starting the process again as I no longer live in the West Midlands. My advice would be to make sure if you are lucky enough to meet a Dr who diagnoses a Mast Cell Disorder make sure that they explicitly explain the name, and what it is to your GP.

[Hidden in reply to Tynderbox]

Thanks for those doctors names, , I live in Manchester so if anyone knows anyone closer to me please let me know.

[bookish in reply to Hidden]

Hi, if you ever find anyone, I'd be glad to hear please. Not too far from you. Best wishes. I react to a lot of fillers but use Lamberts quercetin without difficulty (so far).

[Hidden in reply to bookish]

Quite a few specialists now do zoom consultations so it doesn't matter where they are based. But i found that Dr Ravi Sargur comes to the Alexandra Hospital in Cheadle once a week. £250 per consultation 0161 464 8641/0808 296 4586. I managed to book an appointment with him but then cancelled and booked one with Dr Tina Peers remotely for 26 April which i am going to cancel today. Her secretary is Tracey Thompson and direct dial is 01252 895 430. I am cancelling because i have started a programme which is helping and i think this is the answer to MCAS. I have only been doing it one month but already am seeing improvements and benefits. It gets to the root of the problem which is lymbic system impairment and doesn't just treat the symptoms. I recommend you google the dynamic neural retraining system by Annie Hopper. I also recommend you go to facebook and join the MCAS facebook pages for MCAS organisations as there are at least 3. They have a wealth of information in their file pages and also lists of doctors. People share what works for them, it's there that i found out about DNRS and am so grateful i did. There is hope, you can heal completely from MCAS and many have.

[bookish in reply to Hidden]

That is really helpful and interesting, thank you. I'd only just been reading something from Beth O'Hara (Mast Cell 360) about her programme to work on the parasympathetic, the vagal nerve and the limbic system. Mast cell dysfunction does seem to be a symptom, or set of symptoms and not an end point diagnosis or 'disease' - at least, not in all cases. I will definitely look at Annie Hopper (before I pay Beth!). I don't do facebook so will have to give that a miss, but really pleased that you are finding something that is working. I've been working on the vagus for a while (and lymph) but was clearly missing something. Thanks again and best wishes x

[Hidden in reply to bookish]

I never did facebook either but honestly it was worth signing up to find out all the information i did. However now i have come off everything apart from this as part of the healing process. Don't spend any more money on anything until you have looked at the DNRS programme. I spent thousands of pounds treating symptoms and i now know that to heal properly you have to get to the root of the problem and root is a brain trauma and the brain is stuck in a stress response releasing all sorts of chemicals which impacts on all systems of the body. That's why the symptoms are so random and affect everything. Once you start addressing the lymbic system impairment the other symptoms will slowly fade. In one month i have seen real benefits and am on no medication as i had developed reactions to everything. I only take DAO for the food sensitivities and vit c and zinc. I am sleeping better, my mood is better, the pain has decreased in just one month and i know i am on the way to full healing. the programme costs £220 roughly. The price of one doctor's consultation, but the difference is that's all you will need to spend unless you decide to pay for a coach too. No supplements to take or other money to spend and you will treat the root not just the symptoms. it takes commitment for at least 1 hour a day for at least 6 months. I have just started this journey but i have real hope that i will achieve complete healing based on the other stories i have read and my own experience so far. My friend who has chemical sensitivities, fibromyalgia and other symptoms has also started the programme and is seeing improvements in the same time.

[bookish in reply to Hidden]

Thank you for that. I did join a closed Facebook group for Micki Rose's Truly Gluten Free people some time ago, but when after some months fb wanted photos before I could log in I rebelled! I have a book of Micki's called 8 step healing plan, Recovery From Chronic Illness with mind-body medicine (Michaela Rose 2018), which I am slowly working my way through (along with Datis Kharrazian's epic 'Why Isn't My Brain Working?') - if you haven't read them I recommend both. Micki mentions Annie Hopper and says that she did try the system but that for her at that time it was too over-stimulating as her amygdala was still too hyper, but she did find it helpful and she suggests listening to the free stuff on YouTube to begin with. Beth's programme is only $89, but I'll hold fire until I've watched some of Annie. I'm seriously broke, so even that needed thought! I know what you mean about reacting to everything. I don't take any medication but have managed to find a good number of supplements (thanks to Micki) that I can tolerate. Methylfolate was hugely important for me, plus B12 and magnesium. Those and tapping (EFT), meditation, vagus exercises etc have changed a lot for me already, but still a work in progress. As Micki says 'This illness is temporary, it will pass and something inside me is already changing'. Best wishes to you and your friend.

[Hidden in reply to bookish]

Hope you also improve. With DNRS as the brain starts to change at first you an get an increase in symptoms which happened to me for a couple of weeks. The brain senses change and releases more stress hormones because it is not sure if it is good or bad change but then you start seeing the benefits. Some of the things i have learned are: do everything you can to lift your mood. Stop reading, discussing or mentioning illness or symptoms. (that's why i came off the facebook MCAS groups and i have made an exception here today). As you feel a negative thought about it starting, distract and focus on something else. Do laughter yoga (you tube). Watch happy videos eg you tube such as laughing babies etc. Dance, sing, exercise. Start slow and increase as you are able. All this is designed to retrain your brain into a calm state. There are other exercises to do which are too long to explain here but that is a start. All the best and hope you also get relief soon.

[bookish in reply to Hidden]

I'm glad you made an exception and I thank you for it. Micki's group was just positive and supportive too, no negative, and what you say certainly sounds like what she says in the book. It is tricky, because some of the things that have lifted my mood most over the last 6 years, since I quit the medication, have been finding out and successfully treating things that doctors have ignored for years. But I spend far more time than I did with much less stress and like you say, watching the happy stuff. My garden is my lifesaver. Very best to you and thanks again.

[Sneedle in reply to Hidden]

Hello, I have CFS and my daughter likely MCAS. I have been wondering about DNRS. If you spot this message, perhaps you'd be willing to give a quick update on how you're doing with the programme? No negative discussion I promise, just leaping forward into health! It would be very much appreciated, but no worries if not. Cheers.

[HBEd in reply to Hidden]

Hi did y find anyone I'm the end I'm in lamcashire and aslo struggling

[HBEd]

HiHow did your testing go

Any advice I am also in the North West and keen to know who to see and how to get referred in the first place

Appreciate your experience and how you are now

[HelenW1988]

Hi, I have been on my own journey for the past 10 months so forgot about this group which has been incredibly helpful for me when I first went for my skin biopsy last year.I live in Great Harwood (between Burnley and Blackburn) and have finally managed to find someone who is going to look in to my condition.

My original appointment was with a dermatologist due to my skin lesions/ spots at Blackburn hospital. I had a biopsy and serum tryptase test due to him.

I have since been referred to a haematologist by my GP at Blackburn hospital too who saw me 2 weeks ago and is sending me for a bone marrow biopsy and a load more blood tests. She is referring me to the immunology department at Blackburn hospital too as I was turned down from Leeds, Manchester and Burnley. My immunology appointment in Preston is the 24th July 2024 so a little bit of a wait haha!

If anyone wants any more details of my doctors/ specialists let me know. Will update of results etc. I know not everyone's path will be the same as mine but hopefully this will help.

[Melonlover in reply to HelenW1988]

Hi

You seem to be on the same journey as me! My appt with allergy and immunology at preston is May 2024. I really wish you well on your continued journey and would be so grateful if you could share dr's/specialists with me as I am pretty much at my wits end now.

Best wishes to you.

[Luna-rat in reply to HelenW1988]

Hello I hope all is well, would you mind sharing the doctors and specialists name with me please I live in the north west close to the area x