RE: NCU for lcorder@tetratec

[Guest guest]

I agree Jackie, and if you were tested for Mastocytosis, how were you

tested? Love, ~Alena's Mom

RE: Poll

> Date: Mon, 19 Nov 2001 12:11:19 -0600

>

>

> > Urticaria Poll

> > Present age: 41

>

> > Age urticaria started: 39

> >

> > Type or urticaria (if known): Ideopathic, angiodemic, pressure and heat

> > makes it worse.

> >

> > Length of present CU: 2 years

> >

> > Allergies & other triggers(if known): Iodine, dust, animal dander

> >

> > Meds presently on (and quantities): Allegra 180 mg, 2 a day, Clariton

10

> > mg, 2 a day, Zyrteq 10 mg, 2 a day, Dioxepin 10 mg, 1 a day.

Prednisone

> > on REALLY bad bouts.

>

> > Other non-prescrition meds, remedies: Tried everything, but haven't

found

> > a thing that works (besides patience).

> >

> > Creams & lotions that help: Aveeno anti-itch cream (aaaahhh)

> >

> > Meds that did not work: what I'm taking, unless you count the fact that

> > the hives would be much worse without them.

> >

> > Other related ailments: diarrhea or constipation constantly, stomach

> > cramps, fatigue, hair loss, brittle bones, mood swings (or is that just

> my

> > personality?), loss of weight turning to weight gain.

> >

> > Family history - allergy/skin:

> >

> > Mother: unknown

>

> > Father: unknown

>

> > Siblings: 1 brother, 1 sister, no known allergies

>

> > Children: 1 beautiful 8-year old boy, no known allergies, but did have

> > asthma and pneumonia as a baby.

>

> > Area of world you live in: Texas

>

> >

> >

[Guest guest]

Answering both your questions, no (at least I don't think so). I get vague

answers from my allergist when I ask what certain tests are for, but all

I've had are routine blood tests and once a 24-hour urine test. What kind of

test do they do for this?

I have been reading the posts about masto, and feel it all sounds too

familiar.

> Re: NCU for lcorder@tetratec

>

> I agree Jackie, and if you were tested for Mastocytosis, how were you

> tested? Love, ~Alena's Mom

> RE: Poll

> > Date: Mon, 19 Nov 2001 12:11:19 -0600

> >

> >

> > > Urticaria Poll

> > > Present age: 41

> >

> > > Age urticaria started: 39

> > >

> > > Type or urticaria (if known): Ideopathic, angiodemic, pressure and

> heat

> > > makes it worse.

> > >

> > > Length of present CU: 2 years

> > >

> > > Allergies & other triggers(if known): Iodine, dust, animal dander

> > >

> > > Meds presently on (and quantities): Allegra 180 mg, 2 a day, Clariton

> 10

> > > mg, 2 a day, Zyrteq 10 mg, 2 a day, Dioxepin 10 mg, 1 a day.

> Prednisone

> > > on REALLY bad bouts.

> >

> > > Other non-prescrition meds, remedies: Tried everything, but haven't

> found

> > > a thing that works (besides patience).

> > >

> > > Creams & lotions that help: Aveeno anti-itch cream (aaaahhh)

> > >

> > > Meds that did not work: what I'm taking, unless you count the fact

> that

> > > the hives would be much worse without them.

> > >

> > > Other related ailments: diarrhea or constipation constantly, stomach

> > > cramps, fatigue, hair loss, brittle bones, mood swings (or is that

> just

> > my

> > > personality?), loss of weight turning to weight gain.

> > >

> > > Family history - allergy/skin:

> > >

> > > Mother: unknown

> >

> > > Father: unknown

> >

> > > Siblings: 1 brother, 1 sister, no known allergies

> >

> > > Children: 1 beautiful 8-year old boy, no known allergies, but did

> have

> > > asthma and pneumonia as a baby.

> >

> > > Area of world you live in: Texas

> >

> > >

> > >

[Guest guest]

Hi There are a few different ways to be tested. The 24-hour urine test would

of had to been a 24-hour urine METHYL test. A skin biopsy could tell you if

you have urticaria pigmentosa. Do you have brown spots. I always thought

they were bruises on Alena but never yellowed/green phased. Sometimes they

appear after a hive and some are just there no matter what. Mostly on her

legs. UP spots could look similar to a reddish mole or flat like a bruise,

they vary greatly in size and amount. The alphaprotryptase is a blood test

that indicates systemic mastocytosis. If you would like that information

please read below. Bone marrow biopsies are also done. Any single test can

RULE IN masto but NONE can RULE OUT masto. I think you really should be

tested. Gastrocrom may be VERY beneficial to you as it helps out so much

with gastrointestinal trouble and makes a wonderful cream that helps so

much. Do you also have problems with flushing? Dermographism? Love,

~Alena's Mom

Tryptase

There are several standard tests that are used for evaluating mastocytosis

that may or may not be useful. The urine tests for metabolites of histamine

has been frequently used. A negative result is uninformative, though,

because it may mean that your mast cells were not releasing histamine at the

time the testing was done.

There is now a lab test that is an accepted indicator of systemic

mastocytosis, described by Duff Hogan MD and Lawrence B. Schwartz MD

in an article called " Markers of Mast Cell Degranulation " in the journal

Methods: A Companion to Methods in Enzymology 13, 43-52 (1997). Dr.

Schwartz first identified the mast cell chemical tryptase in 1981. He is

also quoted in several articles by other researchers, and is an accepted

expert in mast cell biochemistry.

Basically, one form of tryptase, beta-tryptase, is secreted only when mast

cells are stimulated (that is, when they degranulate and release their

chemicals). This is true in people with and without mastocytosis. This

form of tryptase is an enzyme (a catalyst) that breaks up some kinds of

proteins.

The other form of tryptase, alpha-protryptase, is secreted by mast cells as

part of their normal job description. It is not stored in granules, but is

steadily secreted as it is being made. This is true in people with and

without mastocytosis. It is different to measure because it does not

function as an enzyme.

Alpha-protryptase is given off by all the mast cells all the time in

everyone. If you have too many mast cells, you have too much

alpha-protryptase. So measuring the alpha-protryptase tells your doctor and

you whether you are dealing with too many mast cells.

Measuring alpha-protryptase is the best way presently possible of measuring

the number of mast cells a person has.

One needs to have two tests: Total tryptase and beta-tryptase. The

difference between the total tryptase level and the beta-tryptase level is

the amount of alpha-protryptase being secreted by mast cells. From this

figure one can have a measure of how many mast cells one is carrying around

at the time. In most labs though, only a single test for total tryptase is

performed. If blood is drawn at a time when the patient's symptoms have

been at a low level for half a day or more, one can expect that the level of

beta-tryptase will be minimal or zero, so the entire amount of " total

tryptase " can be taken as being alpha-protryptase.

There were a few questions, which I'll answer to the whole group.

You do not need to go off any meds or do any special preparation for the

test.

There is no reason to time the test just after a reaction. Anytime will be

good. If you have had an anaphylaxis or other bad reaction in the previous

8 hours, though, it would be interesting to Dr. Schwartz's lab to know that.

Reason: your alpha-protryptase will not be affected, but the beta-tryptase

will probably be very high. It is the alpha-protryptase level that tells

you how many mast cells your body is dealing with.

If you have the test done in a lab that measures only total tryptase, it is

best to have the blood drawn at a time when symptoms are at a low level if

your aim is to learn how many mast cells you have.

Because both forms of tryptase are constantly being eliminated from the

blood, this test measures the amount of both sorts of tryptase which your

mast cells have secreted in the last few hours. It isn't a collective

measure over days.

For people with a clinical diagnosis (not a biopsy diagnosis), this test

will take the nagging doubt out of your doctor's mind. Or it may suggest

that something else should be considered, for instance, a normal mast cell

burden but increased sensitivity to triggers. This should suggest new

approaches to treatment that could make you feel better.

Having a " positive " from this test would eliminate the need for biopsies

just to confirm diagnosis - much less invasive, and gives concrete evidence

of an increased number of mast cells.

Having a defined level of mast cell burden now will give you a baseline

against which you can compare another test later, if your symptoms increase

or change, or if a treatment is developed that is supposed to lower the

number of mast cells.

> 1) Can you tell me what is meant by " clinical diagnosis " versus a

" biopsy diagnosis " ?

A clinical diagnosis is based on the " clinical picture " of the patient when

he/she goes to the doctor. It is a mixture of history, physical

examination, symptoms described by the patient and/or observed by the

examiner, and basic lab tests (and sometimes more specialized tests that

don't give a definite answer for one reason or another).

A biopsy diagnosis is based on a pathology report on a tissue sample from

the patient. In the case of mastocytosis, the tissue sample can be skin (to

diagnose urticaria pigmentosa or diffuse cutaneous mastocytosis), bone

marrow (the " gold standard " for diagnosis of systemic mastocytosis), spleen

and/or lymph node(s), or gastrointestinal tract (less well accepted because

of the wide range of mast cell numbers found in patients without

mastocytosis).

> 2) Please describe the difference between a " normal mast cell burden "

versus " increased sensitivity to triggers "

There are some people who don't have a demonstrated increase in mast cell

numbers who still have the symptoms of systemic mastocytosis. These people

may have mast cells that, for some reason, release their mediators -

especially histamine - in excessive quantities after exposure to something

in the tissue or the external environment that would not cause such a

response in a non-affected person. The tryptase test, which gives us a

measure of alpha-protryptase, answers the question about whether this is

what is happening, or whether these people actually have an accumulation of

mast cells somewhere that hasn't been identified by biopsy.

> 3) another term the text used that I am not sure how to interpret is:

" non-allergic trigger " versus an " allergic trigger " . Can you please define

these terms?

My mind is finally able to embrace as true the following: each mast cell,

which is so small it must be viewed under a microscope, has on the surface

of its cell membrane - its outer cover - thousands of receptors. A receptor

is a protein shaped in a particular fashion which has a " tail " reaching

through the cell membrane and ending up inside the cell. It is through

things latching onto the receptors that a mast cell is kept current on what

is happening outside itself.

A large number of these receptors are a type named Fc epsilon R I, which

means that it is the type I Receptor that is grabbed by the Fc (bottom) end

of immunoglobulin E (the sort of immunoglobulin your blood cells make when

confronted by a foreign substance they interpret as an allergen). The Greek

letter " epsilon " specifies the receptor, and the immunoglobulin just is E.

So it's the type I Receptor for IgE.

When there is IgE in your body, some of it holds to these receptors on your

mast cells. Nothing happens yet. Along comes an allergen, which attaches

to some of the IgE on a mast cell and turns the whole assembly on. Then the

mast cell secretes histamine and many other troublesome chemicals.

There are other types of receptors - one which makes some of us flush in

response to morphine, receptors for estrogen, and others, on and in each

mast cell. When these receptors are occupied by their chosen molecule, a

signal goes into the mast cell and causes a response. These other

" triggers " for mast cell activation are not of the allergic type.

Instructions for sending a sample of blood to Dr. Schwartz's lab for

testing:

Do not stop taking any of your medications.

A sample drawn at a time when symptoms are not severe is preferred but not

essential.

One to two cc of serum should be collected in a " red top (no additive) "

tube, stored frozen, and shipped overnight frozen on dry ice (preferable) or

on regular ice. They should arrive in Dr. Schwartz's lab on Tue, Wed, Thu

or Fri. The shipping address is Lawrence B Schwartz, MD PhD

Virginia Commonwealth University,

1112 East Clay Street

McGuire Hall - Room 4-114

Richmond, VA 23298-0263

Phone: 804 828-9685 fax: 804 828-0283

The cost is about $60/sample and is covered by most insurance companies.

RE: Poll

> > > Date: Mon, 19 Nov 2001 12:11:19 -0600

> > >

> > >

> > > > Urticaria Poll

> > > > Present age: 41

> > >

> > > > Age urticaria started: 39

> > > >

> > > > Type or urticaria (if known): Ideopathic, angiodemic, pressure and

> > heat

> > > > makes it worse.

> > > >

> > > > Length of present CU: 2 years

> > > >

> > > > Allergies & other triggers(if known): Iodine, dust, animal dander

> > > >

> > > > Meds presently on (and quantities): Allegra 180 mg, 2 a day,

Clariton

> > 10

> > > > mg, 2 a day, Zyrteq 10 mg, 2 a day, Dioxepin 10 mg, 1 a day.

> > Prednisone

> > > > on REALLY bad bouts.

> > >

> > > > Other non-prescrition meds, remedies: Tried everything, but haven't

> > found

> > > > a thing that works (besides patience).

> > > >

> > > > Creams & lotions that help: Aveeno anti-itch cream (aaaahhh)

> > > >

> > > > Meds that did not work: what I'm taking, unless you count the fact

> > that

> > > > the hives would be much worse without them.

> > > >

> > > > Other related ailments: diarrhea or constipation constantly,

stomach

> > > > cramps, fatigue, hair loss, brittle bones, mood swings (or is that

> > just

> > > my

> > > > personality?), loss of weight turning to weight gain.

> > > >

> > > > Family history - allergy/skin:

> > > >

> > > > Mother: unknown

> > >

> > > > Father: unknown

> > >

> > > > Siblings: 1 brother, 1 sister, no known allergies

> > >

> > > > Children: 1 beautiful 8-year old boy, no known allergies, but did

> > have

> > > > asthma and pneumonia as a baby.

> > >

> > > > Area of world you live in: Texas

> > >

> > > >

> > > >

[Guest guest]

There are currently 5 tests from what Myra has told me:

1) bone marrow biopsy - OUCH! a sample is taken from your long bones in the

leg

2) 24HR METHYL-histamine test (urine test) - to quote Myra, " you

should be off all meds to take this test and most people who have

that much histamine in their body cannot be off all meds to have the

test.... Also many Drs substitute this test with other urine

histamine tests and call it good... wrong they won't work. The

problem with this test is it is based on half life of histamine and

many masto people cycle... sooooo timing is everything. "

3) spot biopsy

4) Alpha-protryptase - this is a blood test that needs to be sent out to a

lab in VA

5) a new test that has just been developed that Myra mentioned to me, but

she didn't send me any info about it, so I can't tell you anything about

this one

As Myra has pointed out several times: As far as the tests for masto...

THERE IS NO TEST WHICH CAN RULE IT

OUT... only rule it in. Also, whoever is doing the testing needs to know

what they are doing in regards to masto testing (as in staining and reading

the results), otherwise you can get incorrect results. The Alpha-protryptase

test sounds like the best one to me, and I believe that is the one that

finally confirmed Alena's diagnosis for . This is the test I plan to

have done as well. So far all I have is a clinical diagnosis - in other

words, the doctor's opinion based upon the symptoms and history I have,

without any sort of lab work to back that up (as far as I know - still

haven't gotten my hands on the lab work results).

Air hugs,

Jackie

Life is tough, but I'm tougher.

----Original Message Follows----

From: lcorder@...

Reply-To: urticaria

To: urticaria

Subject: RE: NCU for lcorder@tetratec

Date: Mon, 19 Nov 2001 12:31:48 -0600

Answering both your questions, no (at least I don't think so). I get vague

answers from my allergist when I ask what certain tests are for, but all

I've had are routine blood tests and once a 24-hour urine test. What kind of

test do they do for this?

I have been reading the posts about masto, and feel it all sounds too

familiar.

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