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Greetings from Virginia (Read 1585 times)
3blackcats
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Greetings from Virginia
04/24/12 at 03:35:43
 
Hello from a newbie!  I have been diagnosed with masto after many years of a slow slide into food intolerance, followed by a quick fall off the edge of a cliff a year ago.  Though I'm not totally convinced of this diagnosis, since I don't present with many of the common symptoms... or maybe I just haven't come to grips with the concept of a basically untreatable "mystery" illness yet. My latest DR says the only reason she knows of sudden onset like that was exposure to mold/mildew from water damage... and that fits because there was just such an event in my office last year when it all started.

Well, not started.  As I came into menopause, I lost soy, beans, and gluten... but was actually doing well until suddenly I couldn't eat anything anymore and lost 57 pounds in 4 months.  

At this point I have six foods I can eat, and I eat a great deal of those foods, on a 3-day rotation. even with 200o-2400 calories a day, I'm barely maintaining a "starving refugee" weigh.  And I have frequent digestive disturbances, mostly acid stomach an hour after eating followed by flatulence followed by hot flashes.  I am using mostly Homeopathy to control symptoms, with a bit of Tums antiacid, but more than 1 tab a day gives me constipation.  The only clinical indications that have shown up from my many thousands of dollars of tests are inflammation of the duodenum and a typtase level between 16-21.  

I have learned a lot already, though, from other posts on this network, and I hope I may have gained some knowledge to share that could help others.  I am favoring alternative / complementary treatments at this time, like reiki and acupuncture, since I cannot tolerate probiotics, supplements, herbs, and most pharmaceuticals.  I have not tried Gastrocrom yet because of the prohibitive expense of it here in the US, but I might get just one days' worth and see if I can tolerate it.

My good wishes go out to everyone struggling with this challenging disorder, with hopes always for improvement!
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Joan
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Re: Greetings from Virginia
Reply #1 - 04/26/12 at 18:18:49
 
Hi in Virginia and welcome to the forum!

Sorry to hear you've been suffering.  As you probably know from your reading, most of us have to take daily antihistamines (H1 and H2) in order to control symptoms.  I completely understand your reluctance to get on a pharmaceutical regimen, but you may find that is what will get you feeling better and back to good health and a better diet.  

One problem with eating only six foods is that you can't get the nutrients your body needs to maintain itself in a healthy state, and that puts you at risk for other potential illnesses and can contribute to other damage in the body.  Inflammation over time may be harder to reverse.

A tryptase of 16-21 is abnormal and your symptoms are not uncommon in MC patients.  Have you had other tests to rule out carcinoid syndrome and pheochromocytoma?  There are posts here that you may have already read that list the tests and procedures that need to be done to confirm mastocytosis.  Biopsies taken during an endoscopy and colonoscopy can be tested to see if there are excess mast cells in the GI tract.  Do you know if that was done?  Have they done a bone marrow biopsy?  These tests can confirm the diagnosis beyond a doubt.

Regarding gastrocrom, Dr. Theo Theoharides is studying the effectiveness of gastrocrom vs. luteolin, a natural bioflavonoid, in stabilizing mast cells.  He'll be at the Colorado mastocytosis support group meeting next week speaking on that exact subject.  I'm planning to post a summary of his lecture.

There are ways to introduce supplements and meds that might make them easier to tolerate.  Starting with tiny doses and working up is effective for many people.  Diluting the medicine with a lot of water and taking it with food can help, too.  Also, a low histamine diet has helped a lot of people find more foods they can tolerate.

If you have any specific questions, post them.  People here are always willing to help.
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Joan
 
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