Mcas Confirmed!!

[Alan-pots-IST]

jumping through hoops ,to get this ketotifen cant be fun when you feel bad like this. im not even 100% sure i have mast cell, MCAD

I dont think i flush , but i have sensitivities that seem to set off a type of pots that make it hard for me to even set up with out being dizzy and breathing problems.

I tryed benadryl and a 24hour 10 mg zyrtec and one zantac 150 and it seems to help a lot. i got some realy bad hiccups that lasted for days. i think from thr zantac.

but like i was saying i dont think i flush. but this h1 and h2 thing is helping me.

[diamondcut]

Im going to see if i can obtain Ketotifen this week from my GP (Im in the UK) so if i can get it i will let you know how i go on it, my tummy is still sore days after stopping Nystatin, wish i had never taken the stuff!!! But thought was worth a go for my constant thrush. So need to wait just a few days to let my tnny settle down then will start the K.

Its interesting Issie what yo say about vit C and how it can give you lower GI problems, i have just realised that CQ10 at 100mg is bothering me. Im really upset about this because my nuero was talking about putting me on this for migraine at a high dose. I am taking it in the soft gel form. Does anyone know if supplememnts are more potent as gel liquids than chalky pills, could this be why the COq10 is making me dash to the loo so to speak...

[DoozlyGirl]

Alan,

Not everyone with MCAS has flushing. Do you have any symptoms related to your skin?

But one skin symptom (such as flushing, rash, hives, swelling, angioedema, etc) and one symptom in another organ, such as the heart (such as profound tachycardia, hypotension, arrythmia, etc) or GI system (such as vomiting, "D", etc) at the same time can indicate anaphylaxis, which follows mast cell degranulation.

One key point is that a H1 and H2 helped you feel better.

Lyn

[Alan-pots-IST]

i dont think i have symptoms related to your skin, when i was younger i had rash on my neck when ever i eat food with preservatives, like lunch meats but i dont thnik i get that now days.

i do get the profound tachycardia, hypotension, arrythmia right now im doing ok, not 100% i have more of a IST thing going on then a pots thing right now.

im even joging working out, bike rideing right now.

its got to me the H1 H2 thats helping me.

i feel so bad for others that dont know whats going on with this ;-(

[issie]

I found some ketotifen eye drops here in the states. Called Alaway by Bausch and Lomb. They are over the counter.

Issie

[Christy_D]

Alan-pots-ist,

My son doesn't flush. But when the doctor scratched his back it left a large red welt that stayed there for a while.

Christy

[songcanary]

Lyn,

Years ago when I drank wine I had unrelenting chronic UTIs. It was just trial and error that I figured out it was the sulfites. But then I got hives from the drugs to treat the UTIs. More trial and error to detect the sulfa allergy. Now I don't touch either one!

[Alan-pots-IST]

dose useing the ketotifen eye drops help stabilize mast cell in the body?

[DoozlyGirl]

Thanks Christy for your posts. I especially appreciate your son's lab values, which helps me put my values in perspective. I also have dermatographism, the marks left after scratching the skin. Alan, this is a tell-tale sign mast cells are involved.

Songcanary, yeah, its sad that meds have made we worse over the years and it wasn't until I learned about mast cells could I connect the dots. An allergist was the first to connect my previous sulfa antibiotic reactions to tachycardia to HCTZ, stating it was likely sulfa crossreactivity. I first started looking at sulfites since I was reacting to wine and liquors. The rest unraveled a little at a time. Trial and error works so much better when you have other's stories to know what is possible.

Alan, ketotifen drops will stablize mast cells in the eyes and abort eye allergy symptoms.

[Alan-pots-IST]

i have allergies to grass mold hay, only sometimes. i dont think i have it this year. a few years ago my eyes swelled up and i hjave black rings for a week are so after words from allegies.

How is Dermatographism Diagnosed?

The diagnosis is made by stroking the skin with an object, such as a pen. The appearance of a red, itchy, and sometimes raised rash along the area of the pen stroke makes the diagnosis. Delayed pressure urticaria is diagnosed by placing a weight on the skin or over the shoulder (such as a heavy back pack) for a certain period of time, with an area of swelling and redness appearing for a few hours and possibly lasting for days.

i have the red lines from scratching the skin its a little buppy but cant say for sure. im on h1 and h2 blockers i my need to try it in the next 24h when thay have time to exit my body.

[bellgirl]

The ketotifen eye drops work well for itchy and red eyes, brand Pataday; but I would think you would need the pill for systemic usage. I take the Pataday drops whenever I have a flare. I'm allergic to 5 grasses, dust mites and rag weed, but received desensitization for 4 years because of bad asthma years ago. Now I only use an inhaler, so it really helped getting the allergy shots back then. I lived in New Orleans at the time, but now live in Huntsville, AL; still get asthma on occasion when I am sick.

[LindaJoy]

Lyn, that is so exciting. I would love to be able to see Dr. Afrin. He said that he would oversee my testing here in Ohio with my pcp, who said she would do it, as well, but I know it wouldn't be the same as seeing him. I'm so glad he found your problem and you are seeing improvement. So happy for you. You take care now and thank you so much for sharing.

Linda

[DoozlyGirl]

Thanks LindaJoy. I traveled to South Carolina to be diagnosed by one of the experts and have testing performed in his lab. FOr me, both trips were well worth the distance.

[Christy_D]

Lyn,

I agree the trip is well worth it. We have been to SC 3 times since April and scheduled to go back the end of October. We are trying to find a local doctor to work with Dr Afrin on treatment, but so far they have all turned me down! South Carolina is a 13.5 hour drive for us but I will continue making the trips until we find someone local to help.

Christy

[DoozlyGirl]

Christy,

I have found that physicians at a large academic medical center to be more open and understanding of my issues. I've struggled finding care in the community setting for years. My treating doc is a dermatolgist who practices over 2 hours from home, but at least I don't have to explain what degranulation is. She is well versed in the complexity of mast cell issues, just not familiar with some of the details or specifics of MCAS, but very willing to read and learn. She has several patients with CM. Still waiting for the treatment program from Dr Afrin, but she is willing to order whatever is needed at this time. She knew enough to taper up my antihistamines to maxout on them while waiting for his recommendations.

As I get established on Dr A's treatment recommendations, I plan to find a local allergist to help me develop my tailored emergency plan and reaffirm those connections in my local EMS system. I am very fortunate that Benedryl keeps me out of the ER.

Thanks for sharing.

Lyn

[Dizzysillyak]

Congratulations. Great info. Thanks. I've been looking at this lately too. Mast cells are implicated in

many of my diagnosises.

Over the last 7 years, I've systematically removed the foods and chemicals from my

environment that I know I have problems with but I still have allergies everyday. Granted, I'd feel horrible

if I was still eating gluten, dairy, soy, hfcs, coffee, chocolate, etc. The chemicals and / or proteins in

these did more than cause an allergic reaction. Esp gluten. I get gluten antibodies from this.

Fwiw

as sensitive as I am to gluten my serum tests are normal. My stool tests show my reaction accurately.

This appears to be normal for a lot of people esp since they chsnged the gluten antibody test to

be LESS sensitive.

I was wondering if you'd looked for the root cause of your mast cell problems ? I know leaky gut is related

to tood intolerances but I'm not sure what else is. I'm still going to use meds for now tho.

Tc .. D

[Alan-pots-IST]

ok, i have some claritin 10mg 24h , now do you guys take this 3 times a day? it says to only take it once a day.

and the zantac 150 it says you can take this 2 times a day.. ok and i have benadry 25mg says not to take more then 6 a day.

[Christy_D]

My son takes claritin 10 mg 2x per day and pepcid 40 mg 2x per day.

[Alan-pots-IST]

the claritin 10 mg is that the 24h one?

[issie]

Yes, that's the 24 hour one. I just get the generic one - it's cheaper. I use two of those a day and sometimes 3. I have Zantac 150 and cut it in half - for some reason - I have more problems tolerating the H2's - but, use 1/2 2 times a day also. Use Nasal Crom in the am and take quercetin 2-3 times a day and also turmeric 1-2 times a day. I also use ginger with my turmeric - seems to make it work better. I also take Vit C. Of course, I take a whole lot of supplements - but, these are the ones that help with the mast cell things. Oh, I also take olive leaf in the am.

Issie

[Alan-pots-IST]

do you drink green tea at all?

[issie]

do you drink green tea at all?

Once in awhile. But, it seems to give me jitters worse than coffee. I do however, have a tiny little bit in one of the supplements I use to support vein integrity. I seem okay with it that way.

Issie

[DoozlyGirl]

Dizzy,

It is interesting that you bring up leaky gut. I had extensive allergy testing in the mid 2000's and had tested positive for a huge list of foods and environmental triggers. I was treated at that time with sublingual drops, probiotics, and liquid magnesium and put on a rotational diet, limiting my triggers for a while, then slowly reintrodicing them. That way I only recieved small amounts of any of my allergens at one time, and my allergen drops sensitized my immune system so i could tolerate them without symptoms. I was also treated for chronic candidiasis at that time and the goal of all this treatment at this time was to heal my leaky gut.

Eventually, I had been referred out and over time that treatment plan had been changed, but I have been integrating pieces of that plan into my current one. My allergist at the time was a brilliant environmental allergist who urged me to NOT eliminate everything I tested positive for, just limit it until reintroducing it. My allergy testing showed my reactions were delayed, not the immediate hypersensitivy type that one expects with allergens (ie different than lets say a peanut allergy.), My food and pet reactions were slow and mild. My allergist felt there was just too much that I was reacting to and he didn't want me to limit my nutrition, as I reacted to corn, wheat, rice, brewer's yeast, baker's yeast, potatoes, lactose, casien, tomatoes, and a dozen others. He warned that by limiting ones diet so much, you lose the enzymatic pathyways required for digestion and breaking down foods.

I have integrated that philosphy into my current way of life. Just about everyone else in the mast cell world is severely limiting their diet to only those foods they don't react to or low histamine or low salycilate, gluten-free, etc . In fact, even though tomatoes are on the high histamine list, I make a tomato basil soup from my own garden fresh ingredients and it clears my brain fog. I am guessing it is the high antioxidants helping me there. So I would hate to limit my diet so severely, because I did that years ago before seeing that allergist and I was miserable. I do choose to eat preservative and dye free, as I react horribly to those substances. I limit my intake of processed foods, and then tend to only eat things with 5 or less ingredients.

I do limit my gluten intake, and often choose alternatives to gluten. I also was tested several times through allergy testing and antibodies a few times, all coming back normal. I seem to be able to tolerate it in small amounts, and feel horrible when I indulge in crusty warm bread or pasta, but I also do better when I eat bread with a protein. I could be having issues with the wheat, yeast or just a flare from the candidiasis, which can cause many of the same symptoms. I seem to to ok with a piece of sourdough or rye bread. But it's all so intertwined, so it's hard to sort out.

Like you, I am choosing to use meds to stabilize and sort out my triggers. I know I need to find a local allergist, but often wonder if I should go back to that environmental allergist. He was located 3.5 hours from home, which is my main drawback. Once I get some things worked out, I plan to pursue my cause of MCAS, but since it is all so new, I suspect this will be much harder than finding the cause of my autonomic neuropathy.

[issie]

I have had the same experience with dysbiosis (leaky gut) and did the food elimination and rotation diet for years. I'm not as strict now as I was back then. But, when I did it really strict - I seemed to do better. I can occasionally have a splurge and be okay with it. But, I do try to limit my gluten, dairy, sugar intake. I usually regret it - if I allow myself a splurge and swear that I'll never do it again. But, of course, you do. Sometimes, you just got to do yourself in. It gives you more determination to be more careful.

I have the delayed reactions to things too. Those are the things that I seem to be able to eat in moderation - some of the time. Things that I flat our reacted to - I have slowly re-introduced and some of them I'm tolerating a little more often now. It's not the foods that are BAD - it's how our bodies react to the foods. We shouldn't think that these foods are BAD - it's just our bodies don't process them correctly. (Of course, we're not talking about refined, non-nutritional foods.) But, like Lyn said - with time - you may can re-introduce some of these foods into your diet and be okay with them. The one thing that gives me anaphylactics is shrimp. That, I can never re-introduce ----nor will I ever even want to try. It's way too scary to even attempt that.

I use probiotics and enzymes 2 times a day. That helps with this sort of issue too. I had to re-heal my intestines from ulcerating colitis that nearly killed me and also had really bad yeast. Actually, had to do chemo two times because of it. (Long story. . . .I've written about it before. - you can look it up if you want to read about it.)

Issie

[Dizzysillyak]

Lol. Issie .. I can so relate to doing myself in .. I got much better, but not cured, after having a 2 hour seizure that started

at my doctors office and ended in the ER. That had to have been one of the most embarrassing and scarey

moments in my life.

I'm not sure what to make of avoiding whole groups of foods. For instance only tomatoes and bacon cause my fibro

pain to return but I'm ok with other foods in those categories. I see this with other foods too.

I just learned a few days ago that mast cells

have been implicated in pelvic pain like vulvodynia, ic, etc. And for 5 ? years now I've been crediting the pain to oxalates because

that's what I'd read. And when I went on the low ox diet for kidney stones my pain went away.

I have the article but can't give you the link from my tablet. I'll look later.

But at any

rate, I get "v" pain from certain high oxalate foods but not all. Cashews, peanuts, chocolate for sure. But I seem to be ok with brazil nuts. I' still playing with this tho. Certain bacteria degrade oxalates so that helps too.

So do you know if mast cells are food specific like gluten antibodies ? Gluten falls into several categories

but I don't react to all of the foods in those categories. Well other than blood glucose wise. All grains

are bad for me for this reason.

Tc .. D