mast cell info from Dr. Castells

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ldubois7
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mast cell info from Dr. Castells

Post by ldubois7 »

Linda :)

LC Oct. 2012
MTHFR gene mutation and many more....
jgivens
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Post by jgivens »

That was fascinating, Linda. Thanks for sharing it.
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
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ldubois7
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Post by ldubois7 »

Hi Jane!


I see you were diagnosed at the end of 2012...I was Oct. of 2012...how are you doing??
Linda :)

LC Oct. 2012
MTHFR gene mutation and many more....
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Post by Leah »

Thanks Linda. About 2/3 of the way through this, she gets to treatment suggestions. Did you notice that antihistamine dose that was recommended is DOUBLE the FDA dose.?
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Post by alcyone »

Thank you for posting this, Linda!
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Post by Gabes-Apg »

Did you notice that antihistamine dose that was recommended is DOUBLE the FDA dose.?
Ika Curumba!
no wonder I need mega doses of magnesium/Vit C / Zinc to keep the histamine levels down!

and no wonder MC'ers have a hard time healing when there is heightened mast cell activity.
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Post by Sheila »

My CC was triggered by a severe allergic reaction to an antibiotic. I finally had a colonoscopy with biopsies 6-7 months later. In the interim, my GI doc was treating me for C diff even though the test result was questionable. Do GI doctors who take biopsies during a colonoscopy also test for Mast cell activation? Are Mast cell issues on their radar when a patient presents with typical MC symptoms? I doubt I mentioned symptoms that I would associate with allergies.

Sheila W

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Post by Gabes-Apg »

Sheila
my last colonscopy I requested Mast Cell Staining, the GI replied, 'we don't really do that in Australia' to which i replied, ' as i am paying for this and i have gone through 24 hrs of discomfort for the cleanout, I want my monies worth'

the pathology came back with positive 'mast cell activity'. The GI stated it was not connected to any of the current symptoms I was having.
Very Strange, considering how taking H1 and H2 blockers relieved the symptoms.

A bit like MC, unless the doctor/specialist has had multiple patients with the issues, they dont really understand the whole of body affect/effect.
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Post by Sheila »

Thanks, Gabes. My GI doc is pretty open minded and if I ever have another colonoscopy, I'll ask him to check for Mast cells. I plan on doubling my antihistamine dosage right away. I'm sneezing, coughing, itchy and swollen eyes, itchy ears, yuck! GI symptoms are pretty good, knock wood. It is really interesting to find these disparate symptoms are all connected.

Sheila W
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Post by ldubois7 »

Gabes,
What would you suggest as a natural supplement for the OTC antihistamines? I don't do well with the OTC ones.
You mentioned zinc/Vit C/magnesium.... dosage?
I have chronic sinus congestion & itchy skin issues.
Linda :)

LC Oct. 2012
MTHFR gene mutation and many more....
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Post by Chrisdat »

Linda, great video. I'm in Boston, and hope to get a referral to Brigham's Mast cell activation clinic. I watched the whole thing very carefully. I feel strongly I have Mast cell involvement, but which type I don't know.

I meet her criteria if 2 plus organs involved.

GI (D and nausea and vomiting - biopsy - LC)
Rhino (nose runs like a faucet when I eat a high histamine food, bad GI response follows within 1 hour to about 6 hours)
Postural hypotension (which I attributed to dehydration, but is so very constant, even when I'm very hydrated)
Tachycardia
Hypertension (no previous history)

Hope all of above will get me in their clinic. I am still losing weight, fighting WD, and malnourished despite my best efforts. Antihistamines help, but not enough. Trying to closely follow low-histamine diet, but the freshness of thee proteins I buy can't be totally controlled, and my histamine threshold seems very low.

Don't think I'm going to double dose of anti-histamines yet (Benadryl, Claritin). That seemed to be the treatment for only some of the MCAS varieties.

I did just get Histame (a DAO in pill form), which I will try if consuming a food I'm insecure about.

Great, great video.
Diagnosed April 2014, after losing 50 lbs. in 6 months.
Delzicol April 2014 (no effect, after 3.5 weeks-removed)
Endicort April 2014 - helping, but still losing.
Pepto-Bismal 9 a day - May 2014
Thankful for support!
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Post by jgivens »

Linda--
In answer to your question about how I am doing--I am doing pretty well. I have been lucky not to have too many things that I react to strongly. I cannot eat eggs, tree nuts (including coconut and any derivatives like coconut oil even on my skin), sugar is hard to process so if I have to sweeten something it is mostly with honey, only small amounts of corn, can't eat oats, and I have been off of dairy for the last month but do not notice much difference with eczema problems. Pepto helped me in two weeks and I have been mostly constipated since January of 2013, though I have had some Normans or near-Normans.

I think the mast cell stuff is interesting because I have to keep tissues nearby when I eat, and have had eczema in my ears, around my eyes and in my nose for some months now. I have two older sisters who have various autoimmune problems---fibromyalgia, guillain barre syndrome, chronic fatigue, etc. I have a son who has dermatographism and struggles with depression and has D easily in response to (we have no idea!).
Jane
Diagnosed with Lymphocytic Colitis 12/19/12
"When it gets dark enough,you can see the stars."
Charles A. Beard
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Post by Gabes-Apg »

Linda
the thread where i mention how much magnesium/Vit C/Zinc
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=19794
mindful I am C dominate MCer so the extra magnesium has helped alleviate the C

If you are cautious about too much magnesium going in via the gut, in Nancy's thread and in Pats thread about magnesium, there is a link with info about dermal applications ie epsom salt baths, magnesium oil on your legs/arms
Well cooked veges with Vit C include, Sweet Potato, Cauliflower, Carrot

Today there is wind, lots of pollen, dust, others are taking anti histamines, I have no allergy symptoms.
after only ?8 weeks of high magnesium /vit C/zinc, I am ecstatic with the results; the mast cell/histamine balanced, the C issues minimised, the nerve pain with the fibro reduced, reduced inflammation in my body, helped the anxiety/depression that I could reduce the Amitrypline.

Like the Vit D3, I am confident that magnesium is another key element to attaining wellness.
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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