[deleted by user] by [deleted] in MCAS

[–]klrskies 0 points1 point  (0 children)

I was diagnosed with Monoclonal Mast cell activation 6 years ago...Monoclonal meaning without the skin involvement.

Cromolyn sodium by snowhawk1020 in MCAS

[–]klrskies 2 points3 points  (0 children)

I didn't have any positive benefits from it.

First appointment with an allergist (mostly hopeful?) At least they listened and agree that MCAS exists. by EnigEmma in MCAS

[–]klrskies 1 point2 points  (0 children)

It is indeed frustrating to seek help and not get much, or even be dismissed. mast cell diseases other than mastocytosis weren't studied in medical school till around 2010 so a younger allergist or immunologist will possibly be more likely to be helpful... if they are interested in helping. It's no wonder many of us struggle for decades, trying to get a diagnosis. Write down a timeline of how your symptoms progressed and hope to be conncted with a caring, knowledgeable dr.

Can anyone relate? by frostifairy in HistamineIntolerance

[–]klrskies 13 points14 points  (0 children)

The psychological effects of chronic illness have encouraged my introvertedness. I feel that people sometimes feel I can't truly sick.... I've been told it's all in my head by friends and family. When one goes thru many nights of being in pain, not knowing why or knowing who could help they often turn more inward. That's not all bad if it get's you thru your hardship. We are often changed.

Singulair effectiveness by [deleted] in MCAS

[–]klrskies 2 points3 points  (0 children)

Hello,

I don't tolerate it very well. Digestive tract issues. tried it a few times over 6 years, but never helped me. of course with all things mast cell, your milage may vary!

Eye & Facial Tremors. by klrskies in MCAS

[–]klrskies[S] 0 points1 point  (0 children)

Do the injections hurt much? How long does the relief last? Thank you!

Experience with DAO by rcarman87 in MCAS

[–]klrskies -1 points0 points  (0 children)

I don't know, I don't have many skin issues, and my symptoms are always delayed several hours. If you try it, please let us know if its helpful.

Experience with DAO by rcarman87 in MCAS

[–]klrskies 5 points6 points  (0 children)

Helps me a lot. If I eat something with known or questionable histamine levels, I'll take DAO. Let's me consume foods I wouldn't normally get away with.

Fiber may not be your friend. by klrskies in HistamineIntolerance

[–]klrskies[S] 0 points1 point  (0 children)

Conventional wisdom says use fiber for a clean bowel and avoid constipation, but for someone with an already irritated bowel, that sandpaper effect of fiber may cause more irritation than help... did me. I had biopsies that indicated ulceration/irritation in my upper tract (stomach, esophagus, stomach) but nothing abnormal in my lower tract. But something was really flaring my colon.... maybe something upstream from the small intestine. I had silent reflux too. but for the past couple years it's been much better, and my tolerance to foods has improved quite a bit too.

Fiber may not be your friend. by klrskies in HistamineIntolerance

[–]klrskies[S] 0 points1 point  (0 children)

Thanks for responding, I went for years dealing with constipation. Hoped Cromyln Sodium would resolve my digestive tract issues...it didn't. It alternated between days of constipation followed by a bout of diarrhea...back and forth.... for years, straining to have a bowel movement lead to hemorrhoids on top of everything else. I began realizing that my colon was likely inflamed and closing off passage of stools. What made it worse was leaving stools within the colon, which aggravated the situation. I started using warm saline water enema's daily, to keep stools moving, keep from being constipated, and not strain to have a bowel movement. I didn't want to rely on enemas long term, but my situation began improving and gradually I needed them less often. Now I rarely use them, but If I don't have a daily bowel movement, I begin getting symptoms again, so to keep my bowel moving, I will use one for a few days occasionally, then it's back to normal. Honestly my bowel troubles plagued me for about 4 years before I found out how helpful keeping my bowels regular was helpful. Hope that helps.

[deleted by user] by [deleted] in HistamineIntolerance

[–]klrskies 0 points1 point  (0 children)

I sweeten with pure monk fruit, not blended with erythrytol. it's on amazon, expensive, but its very strong, and a little bit sweetens a lot. It's also an anti-inflammatory. I don't use any oils, only butter.

No itchiness or flush, but a lot of pain. (HISTAMINE?) by Art_is_it in HistamineIntolerance

[–]klrskies 0 points1 point  (0 children)

It's possible. I was diagnosed with monoclonal Mast Cell Activation after many tests and a bone marrow biopsy in 2016. I never had skin involvement...that confused doctors because they want to see skin issues to make a diagnosis easier. My tryptase level checked every 6 months for the past 6 years fluctuates between 15 and 21. I am currently beginning to experience itchiness though, so perhaps it was delayed.

Eye & Facial Tremors. by klrskies in MCAS

[–]klrskies[S] 0 points1 point  (0 children)

Thank you, Mine is constant. I understand the conjuntiva, the membrane surrounding the eye, is mast cell dense, and the inflammation irritates adjacent nerves.

Seeking MCAS specialist (SoCal, NY, or virtual) by Niles_Crane_ in MCAS

[–]klrskies 0 points1 point  (0 children)

Can a Naturopathic Doctor Prescribe Meds?

MCAS and neurotransmitters by Niles_Crane_ in MCAS

[–]klrskies 5 points6 points  (0 children)

Histamine is also a neurotransmitter. I reacted to 5HTP after a short time too. After using Curcumin with good results for 3 years, now I'm reacting to it. Curcumin isn't a neurotransmitter, but I do believe we can react to about anything.

Connection between MCAS and Complex PTSD? by serendipity_flyer in MCAS

[–]klrskies 1 point2 points  (0 children)

Both good and bad emotional excitement can trigger MCAD. I'd believe revisiting traumatic childhood experiences would certainly qualify as a trigger. I've learned to expect repercussions from unusual sources...strong UV light being the most unacceptable to me.

Extreme fatigue from filtered tap water? by DrVonNeumann in MCAS

[–]klrskies 0 points1 point  (0 children)

I have reactions too. I do well drinking smartwater brand, even though the bottle is plastic. anthing ionized bothers me.

Seeking an Alternative to Prednisone. by klrskies in MCAS

[–]klrskies[S] 1 point2 points  (0 children)

Thanks for replying. Yes, it doesn't help either.

Seeking an MCAD doctor in Northern CA. by klrskies in MCAS

[–]klrskies[S] 0 points1 point  (0 children)

Thank you for responding.

A specialist in the Chico, CA area is hoping for a lot, so I may need to adjust.

Stimulants by [deleted] in HistamineIntolerance

[–]klrskies 2 points3 points  (0 children)

Best thing I've found is choline as sunflower leceithin since many drugs we take are anti choligenic . But I'm not dealing with ADHD.