"normal" MC histamine issues vs Mast Cell Disorders??

[AGM]

Hi there,

I have a question regarding mast cell disorders. After 12wks on the safe diet and almost two weeks of "perfect" poop, I have reacted to something that has makes me fear I've been set back six months (overreacting I am sure, but this is fear speaking). I think it may have been some bitters I added to my water kefir on the weekend (I added quite a bit, but probably only two teaspoons over two drinks) and the next day I had complete D. The following day was almost normal again, but the day after complete mush again. I'm feeling pretty devastated after feeling like I was finally turning a corner since being in somewhat of a flare since March.

Anyway, kind of related to this is the fact I have to get my vaccine and after finally feeling ok with the idea of it, I am now feeling nervous again. A blood test two weeks ago showed I have low platelets (129) and also low white blood cell count. This left me very worried, as I also had low platelets on two occasions last year (145 in Oct 20 and 137 in Nov 20) and have never had them (that I know of) prior to this, therefore prior to the onset of MC. Following from this, I was filling in the questionnaire to book in my Pfizer shot and it asked "Do you have a previous confirmed medical history of heparin induced thrombocytopenia (HIT)?" which worries me, as although I haven't had this, I do currently (or at least two weeks ago) have slight thrombocytopenia. It also asked "Do you have a mast cell disorder?" which reminded me of stuff I had read here and made me Google it and read all about it and worry even more, as it can also cause cytopenias and other symptoms similar to MC.

Sooooo.....something obviously triggered me over the weekend. It caused D then mush and I also had a sore throat on Mon-Wed, which I thought may be a cold coming on as my twins are sick, but now I am wondering if it is a histamine reaction, as I have been a little itchy in the arms too. The itchy arms have happened to me before throughout all this and I just thought it was part of MC, but now I am scared it might be a mast cell disorder and that makes me worried I might have a reaction to the shot, worst case anaphylaxis. So, what is the difference between a full blown mast cell disorder and what we experience with MC? Should I be worried about getting the shot? What about this platelet issue? I did think that perhaps it was related to taking Loperamide daily, but now I am not so sure.

Thanks for reading my anxious thoughts.

[tex]

Hello Alice,

Anyone who has an IBD (and MC is an IBD), should not be taking bitters. Bitters will often cause diarrhea, for IBD patients.

if your twins had some sort of virus, you almost surely did, also. If you had mastocytosis, You wouldn't be wondering — you'd be too busy scratching, and climbing the walls. You'd probably be nagging your doctor most days, for any prescription that might help.

Australia appears to be much more cautious about medical issues than the US. I didn't fill out any forms before I had my Pfizer vaccines, other than the usual medical consent form, which only required a signature. I did mention to the nurse, after she asked, that I have a few allergies and sensitivities, and somewhat serious histamine issues, and I've had an anaphylactic reaction in the past to an insect bite. But after a brief consultation with a supervisor, we decided to go ahead with the vaccination. I waited half an hour before leaving, just in case I did have a reaction, but I never noticed any significant symptoms. I was wearing a watch that shows my heart rate, and my heart rate increased slightly after a few minutes, about as much as it increases after most meals, but after about 10 or 15 minutes, it returned to normal. Nor did I notice any symptoms on subsequent days. The second shot of the series was uneventful for me, also.

Regarding the platelet count issue, I get the impression that the reaction they're concerned about doesn't so much concern actual platelet count, as an allergic reaction associated with the use of heparin, in rare cases. Since I don't take heparin, and it's a rare reaction, anyway, I've never been concerned about that. I'm not sure it would even be an issue, if you were currently taking heparin. Of course, I'm no doctor, but then doctors are having to guess about the situation, also.

After seeing friends, and so many others, die from this virus, I'm willing to put up with a lot of risk in order to get the vaccines, and booster shots, just as soon as I can. I might catch the virus tomorrow, and it could kill me in a week or so, but I'm a lot more likely to win the lottery, than I am to have a serious reaction to the vaccines. And even if I managed to survive the virus, my life would never be the same, afterward.

At least, this is how I look at it.

Tex

[Gabes-Apg]

Hi there
agree with Tex, Mast Cell disorders are whole of body - skin, sinus, gut to a chronic level.

for me, a change in my poop is one indicator that immune system is fighting something - when this happens I increase the Vit D, Magnesium, Vit C, zinc intake. and as we are entering spring here in Aus, there is wattle, jasmine, etc all in flower then it is highly likely there are more histamine triggers in the air

discussions with friends who have auto immune issues, that have had their Pfizer shots, they were more likely to get the known side effect of migraine and nausea. it lasted about 24-32 hours.
my plan is to increase Vit D and magnesium, P5P, 2 days prior to my vaccination date, eat bland low inflammation meals. As soon as I get home, I will be doing the magnesium foot soak to help body cope with the inactive ingredients.

I am not keen on getting any vaccine (have avoided it for over 10 years) albeit based on the current rules, if I want to see family and friends and do activities linked to my interests, vaccine is compulsory.
I am doing the mental and emotional work on this decision so that I am in a good place by 'jab day'

[AGM]

Hi Tex and Gabes,

Thank you so much for your responses, they have both made me feel much calmer and confident.

Tex, that is good to know that symptoms would be so much worse with a mast cell disorder. Google doesn't tell you that part.

I did actually read that about Bitters, but only after the fact! Due to all the different herbs and spices. I actually read that one of the traditional uses is actually to empty the bowels (when used in large doses, but I guess it doesn't take much with an IBD).

And yes, I think that Australia is much stricter with medicines/vaccines etc. Here every single person must wait for 15mins after their vax to be monitored for reactions.

Gabes, that is interesting that viruses affect your gut too. I think that must be part of my current state and that the bitters probably triggered an increase in inflammation which then allowed the virus to affect me too, as I've had other viruses before that haven't triggered my guts, but I was doing well then.

I'm also not too keen on getting the vaccine, but am also doing it due to having too and also feeling it is the "right" thing to do from a civil point of view. Also after having Ross River Virus for months last year and now this, I really don't want something else that could become chronic, so in that respect, I do want it. I am nervous about side effects, but that is partly due to my sister being 100% anti-vax (has been ever since she had kids) and having her go on and on and on about stuff. It leaves me sitting on the fence. I will take your tips and also use some homepathic remedies before and after, even if just for a placebo. I am also preparing myself mentally and am not quite there yet, so haven't booked it in yet. I also want to wait till I get another blood test to check on the platelets. My GP already told me not to get AZ due to the low platelets, but I read that there have been some similar reactions (thrombosis from thrombocytopenia) with Pfizer too, hence the hesitancy.

Thanks again.

[Gabes-Apg]

I have an elderly mother (89) in a panic that I am not protected
(when only 1% of the total population of NSW actually has COVID)

and I have friends who are against vaccination
I dont enter discussions with either party!

at the moment it is a bit de ja vu of when I first diagnosed with MC and I started the MC eating plan - everyone questioning my choice to do such a radical thing!!!
it is my body, my choice.

[Gabes-Apg]

AGM
for history - even though I was vaccinated I still got Whooping Cough and German measles when I was a child
(I had whooping cough for 9 months)

in 2006 I had have chicken pox vaccine and other injections to do work overseas. This with a few other contributors at the time basically kickstarted the autoimmune issues to become active
since then I have done research and it is likely the inactive ingredients I react to not the actual virus component.

I react to aesthetic (Both dental and General) again it is moreso the inactive ingredients I am reacting to
reactions are worse if there is major inflammation - minimal if I am reasonably well

Maintstream medicine do not acknowledge these reactions!!
I have had serious heated discussion with one dentist about it when he disregarded that I react to anethestic. (of note he couldn't find his MSDS to confirm the actual ingredients)
I have given up trying to explain or justify the situation to mainstream practitioners. the current system doesn't allow them to be open to these situations.
I just do my preventative / recovery actions and look after myself.

[AGM]

Oh wow, how frustrating. No, they generally aren't open to these things.

I haven't had a vaccination for years. I had a flu one about ten years ago and felt quite bad afterwards, so didn't do it again. Prior to that the last one would have been yellow fever in 2004 to go to Central America and before that, my childhood ones, so not too many. I know they're not 100%.

[AGM]

Oh and Gabes, which Vit C do you use here in OZ? I had just started having a bit of fresh orange juice about two weeks ago as I don't think I'm getting enough vit C due to it breaking down with heat and I'm eating only cooked things and I started feeling more energetic within days. I bought the Melrose powder too, but am a bit wary of it irritating my gut.

[Gabes-Apg]

Cauliflower and Sweet Potato have Vit C, so these are part of my vegetable staples each day

I use the metagenics ultrasorb Vit C. practitioner only brand ( I get it via my functional Chiro)
I mix it in water and drink it through the day

with the Melrose powder, start with low low dose. like quarter a teaspoon in large glass of water. Sip it over a few hours
if you react then dont have it for three days - then try again with smaller dose. if you react second time I wouldn't have it again

[AGM]

I eat so much sweet potato and love it, but I'm not sure how much vit C it is retaining. I had just bought cauliflower to try again, but am holding off for now. I can have pineapple and that has vit C and I eat it raw, so that's good.

I also use metagenics. I might get that one. I've been fine so far with 1/4tsp of the Melrose one after a meal.

Thanks

[tex]

Are you aware that pineapple is a citrus fruit, and none of us can tolerate citric acid until we been in remission for a while?

Tex

[AGM]

They're not even related. Pineapple is in the Bromeliad family and citrus is in the Rutaceae family.

[tex]

Well I'll be a 's uncle. I wonder where I got that. I read it somewhere years ago, but obviously you're right. Sorry about that. I guess I'll have to go fall on my sword, now.

It does contain roughly 1% of citric acid, but that shouldn't be enough to bother you.I do recall, though, when I was still recovering, I couldn't tolerate pineapple. But maybe that was because of all the sugar.

Tex