Advice please,

[Sotonowl]

Hi everyone,

I'm starting to really struggle now. I'm pretty sure I've ended up with some form of this illness be it Mastocytosis or MCAS I don't know. I think I am Coeliac as well and I've been GF for around 2 and a half years now. I had the coeliac blood test but I was GF when I had it so it was maybe a waste of time having it in the first place. I'm working with a nutritionist and I have lowered the histamine intake and I'm taking a range of supplements. I was referred to the allergy clinic but they just said my tryptase was fine and they didn't seem interested with anything else and I understand a normal tryptase test doesn't really indicate absence of illness.

My symptoms are,

a) Felling pretty crappy when waking in the morning.

b) Tinnitus.

c) Head going numb/fuzzy after drinking something, even water.

d) Facial flushing.

e) A rash I had previously from either soya or cocoa fluctuates between a dark red and being hardly visible.

f) Brain fog/memory lapses.

g) Stuffy nose which waxes and wanes.

Left hand can be either normal or red and itchy.

h) Fatigue.

i) My back goes really itchy when out walking especially on a warm day.

j) My ears can sometimes become hot/itchy and feel full.

I've probably missed a few as well.

My questions are would anyone think I'm on the right track with all this? I've been to the GP so many times over the last 4/5 years I think they're sick of the sight of me. I do have a prescription for 2 x Fexofenadine 120mg a day but I honestly get the impression they'll give me anything to get rid of me.

How should I tackle my next eConsult which I'm getting ready to do? What type of medication should I be requesting and what type of specialist should I be asking to be referred to.

Any comments would be great, TIA.

[MarieWK]

Hi,

Yes, it sounds all too familiar. You are not alone in your journey though.

On a personal level, everything opened up and got clearer for me after I went to a dermatologist, as he was able to easily diagnose mastocytosis through a skin biopsy. After that I got access to a hematologist and had my systemic mastocytosis diagnosis.

Hopefully this is of help to you.

Best of luck

[Sotonowl in reply to MarieWK]

Thanks for the reply Marie. Was you having skin issues at the time. This is one thing i'm not having except for a previous rash I had after drinking soya milk and cocoa which keeps changing colour from time to time during the day.

[MarieWK in reply to Sotonowl]

Hi,

I did not think I had particular skin issues at the time, but thought it was connected to allergies or a yeast rash. A nurse had said to me to see a dermatologist, but it was on my to do list for years. My rash/lesions go from bright angry red to very pale brown depending on heat, cold, alcohol, food etc.

Try and look up cutaneous mastocytosis/tmep online.

We are all so different, so it is difficult to give advice, but loads of support.

Best wishes,

[rjkb]

It all sounds very familiar, though my most frequent symptom was a migraine at 3 in the morning. A low histamine diet certainly helps (very low). Avoid any prepared/mixed foods and drinks as you don't know what's in them and they are less fresh . I have recently found yeast is also a trigger, though if you're GF you may already been minimising on yeast, but it turns up in many foods other than bread!

[Sotonowl in reply to rjkb]

Thanks for the reply. I'm working with a nutritionist and i'm on a low histamine diet. I'm really interested to know what medication people are taking and how it's impacted their symptoms as I'd like to know what to ask the Doctor for as I'm pretty sure they'll not have a clue.I'd also like to know where to ask for a referral, what department covers this type of thing, allergy, gastro, haematology? Or where, previously they kept sending me up the ENT bless them.LOL.

[floating_ in reply to Sotonowl]

I see an allergist/dermatologist! But I also have specialists in various other areas (cardiology, respiratory, GI, urology, neurology, etc.). It depends on your needs/comorbid conditions.

Medications mostly vary depending on your needs here too. I'm on Chlorphenamine, Fexofenadine, Famotidine, Nalcrom, Ketotifen, Montelukast. Will hopefully be starting Xolair/Omiluzimab soon. Occasionally oral steroids. My asthma is also closely tied to my MCAS and I'm on Fostair, Ventolin, Carbocisteine for the asthma and soon Spiriva and Dymista. There are some other medications I take for other conditions, but these are the most relevant.

If you have any questions, I'll try and help! Hope this has helped too.

[Sotonowl in reply to floating_]

Yes it has and thanks for the reply. What have you been diagnosed with?

[floating_ in reply to Sotonowl]

Mast Cell activation Syndrome (alongside a few other conditions).

[Sotonowl in reply to floating_]

How did you get diagnosed if I may ask? I suppose your GP referred you to a consultant? What type of consultant? Allergist? Sorry for all the questions, just trying to work things out.😀

[floating_ in reply to Sotonowl]

Yeah, my old GP referred me to St. Thomas' general allergy clinic and they internally referred me to the specialist Urticaria clinic there, where they also treat mast cell diseases (they're the national referral centre for mast cell diseases!). My main MCAS consultant is both an allergist and a dermatologist. The team she works with has Dr. Grattan and Dr. Rutkowski as the consultant leads, and they also work with heamatologists.

[rjkb in reply to Sotonowl]

I’m on Cetirizine (H1 antihistamine) and Famotidine (H2 antihistamine), both twice daily. Also various vitamins as I was deficient on my last blood test due to v restricted diet (despite it being mostly veg). When things go wrong and migraine starts, I use a tryptan painkiller as nothing else works.

[Sotonowl in reply to rjkb]

Thanks for reply. Have you been diagnosed with anything? I'm really interested in the Famotidine as I'm just taking the Fexofenadine at the moment and was wondering if the Famotidine might improve some of my symptoms.

[rjkb]

After several years and many specialists (neurologist for headaches, gasteroenterologist, allergist, dietician, second gasteroenterologist, etc), I went to an internist. (As I live abroad for now, I am not entitled to NHS or similar and am lucky enough to have private health insurance which allowed access to such doctors). She had already treated my mother-in-law, so we knew her to be thorough and listening. From symptoms and blood tests, she diagnosed mastocytosis. She prescribed Cetirizine and vitamins, but she also directed me to a website for other advice. This website recommended taking an "H2 antihistamine" as well. Famotidine is available over the counter so I am trying that too. I think it helps, though a very restricted, very low histamine diet is probably the most effective thing. Restaurants and eating with friends are almost impossible (for the moment) - so the lockdown has had one good impact for me by removing that temptation!

[Sotonowl in reply to rjkb]

May I ask your age when all this happened and are you male or female?

[rjkb in reply to Sotonowl]

I'm male and in my early 60's. I've had irregular migraines since my 20's, without managing to identify consistent obvious triggers. I'm reasonably fit and active. In the past two years, the migraines, and other symptoms, have become more and more frequent, to nearly every day. I am better on this very restricted diet and the antihistamines .... but with some problems every 7 - 10 days.

[rjkb]

Food list - this has really helped.

Category. Cereals, bread etc

Forbidden. All bread and pastry Food in breadcrumbs.

Allowed. Home-made bread and pastry (no yeast or preservatives). Noodles and pasta

Crispbread (without yeast!)

.

Category. Fish.

Forbidden. All processed or smoked fish

. All seafood and shellfish.

Allowed. Trout, salmon, hake, perch. Plaice, sole cod – only if fresh

Category. Meat

Forbidden. All processed or smoked meat

. All offal. All pork and pig meat. All soya and tofu. Allowed. Fresh (or frozen) chicken, turkey, other fowl, lamb, calf, beef. Eggs (not egg white?).

Category. Vegetables

Forbidden. Aubergine, avocado, chickpeas, all beans, mushrooms, olives, peas, peppers, soya, spinach, tomatoes. Prepared salads and vegetables. Preserved or processed vegetables or juice.

Allowed. All other vegetables: beetroot, carrots, Chinese cabbage, onion, pak choi, potatoes, pumpkin, squash.

Category. Fruit

Forbidden. Banana, citrus, kiwi, grapes, mango, papaya, pineapple, prunes, raspberry, rhubarb, strawberry, watermelon.

Preserved or processed fruit or juice. All dried fruit (though I seem to be able to eat dates, raisins and cranberry). All nuts and sunflower seeds.

Allowed. All other fruit: apple, apricot, blackcurrant, blueberry, cherry, melon, Mirabelle plum, nectarine, peach, pear, redcurrant.

Category. Dairy

Forbidden. All yoghurt etc. All cheese (except those allowed).

Allowed. Milk and cream. Butter. Cottage cheese and quark.

Category. Sweets and snacks.

Forbidden. Chocolate, liquorice, marzipan, nougat.

Allowed. Allowed fruits

, popcorn.

Category. Drinks

Forbidden. Alcohol, Caffeinated drinks. Any fermented drink (incl non-alcoholic). Any processed fruit or vegetable juice. Drinks with preservatives, additives or citric acid.

Allowed. Water. Herbal tea. Decaffeinated tea or coffee. Home-made fruit or vegetable juice (from allowed fruits and vegetables).

Category. Other.

Forbidden. Citric acid, curry, honey, marmalade, mustard, soya and soy, sunflower seeds/oil, vinegar, yeast.

All preservatives and colouring (esp monosodium glutamate)

Leftover food!

I hope this helps!

[Sotonowl in reply to rjkb]

Thanks for the insight and taking the time to type all of that. The diet is pretty much what I'm stuck with as well although I do allow myself some M&S GF bread rolls or the Genius Burger rolls. I'm also trying the Coconut yoghurts-koko and the Coconut Collaborative which seem fine. I've had a big hit on the sugar intake although I have been using some in decaf coffee but I think it has to go.The H2 blockers are interesting and I think that should be my next move.

At what % of your normal self would you consider yourself to be at the moment?

[rjkb]

75% .... not being able to eat properly is really frustrating and boring. I have symptoms every 7 - 10 days. I seem to be getting more sensitive to food triggers; things I used to eat a year ago without problems are now apparently trigger symptoms.

[Sotonowl in reply to rjkb]

Thanks for the replies. I'm male also, just turned 66, sounds like we're on the same path although I think mine came of the back of coeliacs disease, or did coeliacs come off the back of the mast cell problem.