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Mast Cell Hell in the Florida ALPS (Read 4907 times)
Don S
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Angioedema patients are
a swell group of folks!

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Florida
Mast Cell Hell in the Florida ALPS
02/08/11 at 15:02:52
 
Hello from the Florida Alps!

I was diagnosed with Mastocytic Enterocolitis after years of supposed IBS flare ups and many rounds of antibiotics.  

This time a severe attack that lasted 4 months and a sharp immunologist led to biopsies during a colonoscopy that came back positive.  

ANA showed up really high several times, serum tryptase was low and all the other stuff was normal except for low Vitamin D.  Skin spots/lesions that were previously dismissed are now interesting to the Dr's again as either UP or TMEP.  

Best of all the angioedema that randomly happened over the last 20 years has an etiology.  

Regimens of Zyrtec/Xyzal, Singular, Benadryl, and Zantac are starting to control the worst of the abdominal symptoms and decreasing the severity of the angioedema.  Main problem is dealing with antihistamines- one benadryl normally knocks me out.

Even though it isn't HAE (C1 and C4 are ok) , related conditions show up in an Uncle, Brother, Daughter and Niece. Hmmm?  
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Joan
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Re: Mast Cell Hell in the Florida ALPS
Reply #1 - 02/08/11 at 18:49:33
 
I also have mastocytic enterocolitis.  Have you tried Gastrocrom? Probiotics?  Dr. Scot Lewey, in Colorado Springs, is studying mastocytic enterocolitis, and he prescribes both of those.  Mayo Clinic recommends "Align" probiotic, which is available at pharmacies and discount stores.  

Hope you've been checked for celiac and parasites, too.  I've used l-glutamine (500-1000 mg., twice/day) for years when I get occasional bouts of digestive disruptions.  Bromelain before meals (2000+ GDU) has been a lifesaver.  These things helped me a lot, but you should check with your doctor regarding adding/changing any medicine.  If you can take salicylates, also found Pepto Bismol (abyssmal) helps.  I rarely have to take Benadryl for stomach issues anymore.
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Riverwn
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Re: Mast Cell Hell in the Florida ALPS
Reply #2 - 02/13/11 at 04:36:43
 
Welcome Don!! Glad to have you here Smiley
I agree with Joan 100%.. Benadryl is a great med but--it needs to be saved as a "rescue" drug when you are having a severe or bad reaction,. Dont take it every day. I would replace it.. with something like Chlortrimeton or Vistaril. Save the benadryl for emergencies. Taking it every day isnt good because Benadryl affects an enzyme that makes mast cells degranulate faster, thats why it should be replaced and used for emergencies only.
Hope you feel better and we are thrilled to have you here with us!!
Hugs,
Ramona
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TRama
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Re: Mast Cell Hell in the Florida ALPS
Reply #3 - 02/13/11 at 05:36:25
 
Hi Don!

In what concerns your abdominal problems, I would advice to ask your immunologist about taking sodium cromolyn (gastrocrom) and gradually reducing benadryl, and to have a food allergen/intolerance panel in order to allow you to strictly avoid potential causes. Be alert for dry mouth, and if present be sure to increase your daily liquid intake and keep a thorough oral hygiene.

I presume you were referring to labial/lingual angioedema... Despite its name HAE is not the only hereditary entity that may be "responsible" for AE. Atopy is more prevalent and is the most plausible cause for your family's AE.

Also, you should have you bone health checked, since you've got low vit-D and low tryptase.

Best wishes,
Tiago Rama, DMD
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Lisa
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Re: Mast Cell Hell in the Florida ALPS
Reply #4 - 02/13/11 at 14:06:42
 
Hi Don!

I fully agree with Tiago, you need to go over this with your doctor as to your meds.   We patients know how hard it is to find doctors who understand all of this and there are times we'll talk as though we are doctors, but we all know that we're not, so you should be speaking with your doctor about the meds and doses and the such.   When you're working with just over the counter antihistamines many times the doctors won't say a whole lot about them, so that's where we can really back you up cause we all have to use them

As to your testing, you're showing autoimmune markers for sure.  I too have a high ANA but I don't fall into any kind of autoimmune disease.  My markers are recognized proof of my autoimmune masto.  This has been officially recognized by the authorities in a WHO consensus meeting in September and if you're doctor isn't aware of this yet, then he's in the same boat as our doctors are, learning about this form along with us.  As yet there has been no research into this form of masto and we're just thankful that they have finally recognized it!!  If you want information on it, send me a PM with your email and I'll be glad to send it to you.    And anybody else for that matter!

I hope this helps!

Lisa
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Riverwn
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Re: Mast Cell Hell in the Florida ALPS
Reply #5 - 02/21/11 at 02:18:45
 
I also want to add that tryptase levels ARE very important but remember, that when baseline tryotase levels are drawn, your body fluctuates those levels every few hours and you might just have had it drawn at a low level time--In other words, have it drawn more than once and stagger the time its drawn ok??

I dont know if you have ever shocked but IF you do, have a tryptase level drawn between 1 to 3 hours after you began shocking, After the 3rd hour it drops quickly, so best to have it drawn as close to the 2nd hour as possible.

That vitamin D level is something many of us forget but its important.. since most of us have sun and heat as a trigger our levels are usually low of Vit D and need to be supplimented, (carefully, you CAN overdose on it).. so have that level drawn and never take more than the recommended daily dose unless your Dr advises it Smiley
Hugs,
Ramona
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mikev
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Re: Mast Cell Hell in the Florida ALPS
Reply #6 - 02/21/11 at 04:00:56
 
Ramona:
Glad you're feeling good enough to post. A lot of supplements for calcium that anti-histamines rob us also have vitamin D with it so 2 things we need for the price on 1, plus more importantly 1 less pill to take. On the tryptase I asked my doc the question as with my last test mine had actually gone from 16 to 18 even though I was on gastrocrom. He said you must have been having a little bit worst day, since I'm a leaker no need to panic unless it goes way up.
Take care
MikeV
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Riverwn
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Re: Mast Cell Hell in the Florida ALPS
Reply #7 - 02/21/11 at 04:31:43
 
He Mike!!! es I am... but it was after shocking on Friday night so I guess i was building towards it.. BIG doses of prednisone again--make me feel good LOL...
I have to take Vit D separate from calcium--I ive in Fla, and no trace magnesium in the states water as there usually is in other starts water.. so they call us the "Kidney stone belt" LOL...

About the difference in levels of Tryptase..both levels were abnormal anyway (anything over 8) I think it as just where your body was at at that hour.. If you get a chance, watch the 3 videos on youtube about mastocytosis symptomology.. Dr Akins, Dr Castells and Dr Theohardes are all on it and one mentions the changes in tryptase during the day. Pretty interesting stuff.. Glad youre having a good day Smiley
Hugs,
Ramona
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Josie
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Re: Mast Cell Hell in the Florida ALPS
Reply #8 - 02/21/11 at 05:23:17
 
Quote:
Hi Don ,

Regarding Angiodeama  , taigo is correct in there being many causes . My derm / immuno , when looking for the cause in me , expained it falls into histamine based - IGe allergy , mastocytosis , mast cell activation , ( Atopy as taigo describes it )

autoimmune based - most commonly but not excusively :- hashimotos thryroidosis , autoimmune addisions ( adrenals ) , renal , lupus , and

Kinin based - HAE . for the femaile members with symptoms a 3rd type of HAE has been documented related to oestrogen ( 2006 ) so still new . The other thing to consider is that the C1 maybe normal but not working properly . This may be an important question for your family to ask your immuno .

H Pylori , bug found in the stomach which causes ulcers in the long term is a known trigger of HAE angiodeama . It is easily erdicated with antibiotics and a proton pump inhibitor for 6 weeks Smiley Its called triple therapy .

Some random , rare causes are also known xxxxxxx In particular carciniod syndrome  and pheaocryocythoma . But they have specific symptom groups . I don't know enough about you to comment further xxxxxxxxxxxxxxxxx  They are unlikely with a family history which has not led to these diagnosies in the past Smiley The test for carciniod in a chemical which is high level - 511HA ( urine 24hour collection ) ( 70 % ) and chromoatogranin A ( 100 % ) .  Pheaocryocythoma is a test of epinepherine and nor epinepherine levels ( urine 24 hr collection )

Hugs and lots of anti histamines

Josie xxxxxxxxxxxxxxxxxx

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