Re: Intolerance vs Allergy (?)

[Guest guest]

is saying that her doctor seems to be saying that there is a

difference between being " sensitive " to ASA, and being " allergic " to ASA.

This is very important -- but I think it needs to be confirmed.

I have always been told that Samterites have an intolerance to aspirin, and

that it is NOT an allergy. The only differences are in degree, ie., mild

to severe, rather than a difference in the type of reaction.

Who else can shed some light on this?

regards,

Ken West

From: squeakieschubert@...

Reply-samters

Date: Thu, 31 Jul 2003 19:10:35 EDT

samters

Subject: Re: diet and polyps/good info

.. . . . snip . . .

I have found out some useful information from my doctor.

*Most people who are Samter's are PROBABLY (NOT ALL) sensitive to aspirin,

but not allergic to it. Desensitizing is decreasing your sensitivity. But if

you were truly allergic to aspirin you would have a very different reaction

to the desensitization. Much more dangerous, could die. But if you are

sensitive like me, you go up slowly in aspirin so the reaction (for me, not

all) is a runny nose and sneezing. But I also had 40 mg of prednison,

Zyrtec, & singulair ontop of my normal meds. Singulair, clarinex or Zyrtex,

advair 250, nasacort, and astelin. All of these helped a lot too.

[Guest guest]

According to a new book I bought on food allergies the difference

between allergy, intolerance, and sensitivity are very important to

understand.

They define the following terms:

allergy: a response of the immune system. Involving immunological

processes similar to (but not exactly the same as) those that fight

and reject an agent that can cause disease, such as a pathogenic

(disease-causing) microorganism. The source is " Dealing With Food

Allergies " by Janice Vickerstaff Joneja, PhD, RDN. A very Good book -

some good info for samerities in here too (salicyates to avoid

etc..)!

intolerance (food): a reaction that does NOT involve the immune

system. It is caused by a problem in the way the body processes the

food or food additive. The term food intolerance is not

interchangable with either food allergy or hypersensitivty.

Hypersensitivity: term scientists use to describe the immunological

process that results in allergy. The terms allergic reaction and

hypersensitivity reaction are often used interchangeably.

sensititvity (food): a rather nonspecific term that refers to the

fact that a person reacts adversely to a food or component of the

food when it is not clear whether the reaction is due to allergy or

intolerance. The term is therefore interchangeable with either food

allergy or food intolerance, but it does not give any indication of

the reaction for a person's symptoms.

Allergy symptoms could include the follwing major organ systems:

respiratory tract (hayfever, asthma)

digestive tract (upset stomach, diarrhea, nausea)

skin and mucous membranes (hives, itching, swelling)

systemic (anaphylaxis)

*** All the above should be credited to the author of this wonderful

book.

[Guest guest]

I have a question... if some of us haven't taken aspirin or NASAIDS

for years, if there is a buildup, how long will it take to diminish?

The more I read on foods related to salicyates the more I think it

isn't really connected. Or at least perhaps for me... The estimated

salicylate daily consumption is estimated to be only 10 to 200 mg

while a regular-strength aspirin apparently has 300 to 325 mg of

acetylsalicylic acid (extra-strength up to 650 mg). So it seems that

you'd have to eat alot of salicyates to get the same effect. Perhaps

that is why some people may have some symptoms but not full blown

attacks....

Nevertheless I am trying to eat a low salicylate diet. BUt I tell ya

my symptoms are back even though I've been doing this... but I wonder

if it is just because I'm off the prednnisone and antibiotics....

oh well...

[Guest guest]

We all seem to be agreeing that there is a distinct difference in chemistry between allergies and intolerances.

The question remains though: are there two kinds of Samters? ie., the intolerant kind which I had always assumed,

AND

the allergic kind? 's doctor seemed to tell here that there were in fact these TWO kinds of Samters (which is why I started this thread).

If true, it may explain a lot of things; if not, the concept needs to be squelched as just a wild goose chase.

regards,

Ken West

From: Kiker <ksa@...>

Reply-samters

Date: Thu, 31 Jul 2003 21:32:41 -0800

samters

Subject: Re: Intolerance vs Allergy (?)

I don't claim to be an expert and am stilll new to this. But, my understanding is that an allergic reaction is an overproduction of histimines when exposed to the allergen, which is why histimine blockers are generally prescribed. Our problem, as I understand it, is a result of excessive of leuketrienes, caused by the buildup of salicylates in our systems. I know each of these biochemical processes is much more complex than this simple description.

Some of the confusion may be due to the similarity of symptoms i.e. burning, itching sinuses; post nasal drip; sneezing; coughing; etc. For years I was diagnosed as having allergies and told antihistimines and flonase (or similar) were my only hope. This after two sets of allergy test came back negative. Also, I have taken plenty of aspirin all of my life (52) up until a couple of weeks before I was diagnosed and have never had an anaphylaxis reaction. It never occurred to try to connect the sneezing and coughing to aspirin because I had used it so frequently for headaches and muscle aches with no gastritis. Even when I overdrank and my stomach was quesy the next day, aspirin only made me feel better. For years I tried to identified what foods or airborn allergens might be cuased the sneezing and coughing. Dr. Demain (Anchorage) described as less a result of exposure and more a result of a buildup of salicylates in the body until a threshold is reached which then results in excess leuketrienes which stimulates the asthma and sinus attacks.

I suspect that there are some pieces of the overall puzzle that are missing but this seems to fit my experience fairly well. I still have times when I have sinus swelling and drainage with congested lungs and try to minimize dietary salicylates with no effect. There are also other times when I can eat practically anything with no apparent effect.

Best to Everyone,

Kiker

Re: Intolerance vs Allergy (?)

I would think a true allergy would cause anaphalaxis(closing of the throat) and so forth, A sensitivity, intolerence or adverse reaction would be like hives, sneezing, nausea, etc.

[Guest guest]

In a message dated 7/31/2003 5:20:41 PM Mountain Daylight Time, kenwest@... writes:

I have always been told that Samterites have an intolerance to aspirin, and

that it is NOT an allergy. The only differences are in degree, ie., mild

to severe, rather than a difference in the type of reaction.

Who else can shed some light on this?

There is a difference. A true allery involves the immune system and is IgE (immunoglobulin E) mediated. (IgE is an antibody created by the immune system that attacks a foreign allergen, such as cat dander or house dust mite parts.) There is a release of histamine and other mediators of inflammation from mast cells and eosinophils in the inflamatory process that occurs when IgE (attached to a mast cell or eosinophil) meets the allergen against which it was raised (or created) by the immune system.

ASA sensitivity is not IgE mediated, but involves enzyme deficiencies or other aberrations in biochemical pathways of inflammation that involve mediators of inflammation, such as prostaglandins. However, the end results and symptoms are much the same for each "disease": eosinophils are involved in each, both are inflammatory illness, both cause asthma, rhinitis and anaphylaxis. In both there is a reaction to a foreign substance. And there are other similarities.

Bob

THE INFORMATION PROVIDED HERE REPRESENTS THE PERSONAL OPINIONS OF THE AUTHOR (WHO ALSO SUFFERS FROM THE DISEASE "ASPIRIN TRIAD" OR "SAMTER'S SYNDROME") AND IS NOT PROFESSIONAL MEDICAL ADVICE.

THERE IS NO DOCTOR-PATIENT RELATIONSHIP FORMED BETWEEN THE AUTHOR AND ANYONE READING THIS INFORMATION. AND THE AUTHOR ENCOURAGES INDIVIDUALS TO BECOME ACTIVE AND INFORMED ABOUT RISKS AND BENEFITS, AND TO WORK WITH THEIR OWN DOCTOR(S) ON TREATMENT STRATEGIES FOR THEIR OWN PERSONAL DISEASE.

[Guest guest]

It is certainly possible there are two kinds or even more. However, I tend to think it may just be a matter of degrees and related to other issues going on in the body. For instance, leuketrienes are a specialized form of white blood cell and these cells apparently tend to gather in organs and tissues where the body feels their presence is required. For us that would be the lungs and sinuses. The purpose of white cells in general is to protect the body from foreign invaders. The leuketrienes produce toxic substances which are designed to kill the foreign invaders. Again, for us this appears to be an invalid or over-response and the toxic substances are excessively produced which, is major contributor to the asthma and sinus attacks. I would guess that, body chemistry being as complex as it is, there are other things that cause concentrations or excess production of leuketrienes. For instance, I understand that excess leuketrienes are found in the flesh and skin around a cut or other wound.

So. I am guessing that some folks may have other issues that also result in excess leuketrienes, which would make their symptoms harder to control. Particularly if the additional causes are not identified or understood my the medical community.

Thanks,

Kiker

Re: Intolerance vs Allergy (?)I would think a true allergy would cause anaphalaxis(closing of the throat) and so forth, A sensitivity, intolerence or adverse reaction would be like hives, sneezing, nausea, etc.

[Guest guest]

, I appreaciate your various comments on this, and the excellent

summary of the leukotrine issues;

but,

my point in starting this thread was 's reporting of her doctor's

opinion that there is an " intolerant " Samters, and an " allergic " Samters.

We have all agreed that allergies are very specific in their chemistry, and

" intolerance " is not the same at all.

Therefore 's doctor is saying very specifically that there are TWO

kinds of Samters -- not just " a matter of degrees " .

I think this claim is profoundly important, so much so that it needs

corroboration from somewhere. So far, none of us seem to have heard of

this concept from anywhere else, so I'm feeling that it is bogus.

regards,

Ken West

From: Kiker <ksa@...>

Reply-samters

Date: Fri, 01 Aug 2003 17:30:21 -0800

samters

Subject: Re: Intolerance vs Allergy (?)

It is certainly possible there are two kinds or even more. However, I tend

to think it may just be a matter of degrees and related to other issues

going on in the body.

.. . . snip . . .

[Guest guest]

Bob, this is a great summary of the difference between an allergy and and

ASA intolerance. As such, even though you do not say so, I'm inferring

that you feel 's doctor was incorrect in talking about an allergic

kind of Samters.

I still feel its important to nail this down a little, because whether or

not the symptoms are the same, if the causes are different, then any

treatment surely must take this into account.

regards,

Ken West

From: rmcginnis@...

Reply-samters

Date: Fri, 1 Aug 2003 22:52:41 EDT

samters

Subject: Re: Intolerance vs Allergy (?)

In a message dated 7/31/2003 5:20:41 PM Mountain Daylight Time,

kenwest@... writes:

> I have always been told that Samterites have an intolerance to aspirin, and

> that it is NOT an allergy. The only differences are in degree, ie., mild

> to severe, rather than a difference in the type of reaction.

>

> Who else can shed some light on this?

There is a difference. A true allery involves the immune system and is IgE

(immunoglobulin E) mediated. (IgE is an antibody created by the immune

system that attacks a foreign allergen, such as cat dander or house dust

mite parts.) There is a release of histamine and other mediators of

inflammation from mast cells and eosinophils in the inflamatory process that

occurs when IgE (attached to a mast cell or eosinophil) meets the allergen

against which it was raised (or created) by the immune system.

ASA sensitivity is not IgE mediated, but involves enzyme deficiencies or

other aberrations in biochemical pathways of inflammation that involve

mediators of inflammation, such as prostaglandins. However, the end results

and symptoms are much the same for each " disease " : eosinophils are involved

in each, both are inflammatory illness, both cause asthma, rhinitis and

anaphylaxis. In both there is a reaction to a foreign substance. And there

are other similarities.

Bob

[Guest guest]

In a message dated 8/2/2003 7:15:00 AM Mountain Daylight Time, kenwest@... writes:

Therefore 's doctor is saying very specifically that there are TWO

kinds of Samters -- not just "a matter of degrees".

I think that maybe what 's doctor means is that there are (1) people who have Samter's syndrome and are not allergic to allergens like cat dander and there (2)are those who have Samter's syndrome and in addition to their Samter's Syndrome they have allergies to allergens like cat dander. Since both conditions, a) true allergy and Samter's syndrome, produce similar effects, the conditions are additive and worsen symptoms.

Bob

THE INFORMATION PROVIDED HERE REPRESENTS THE PERSONAL OPINIONS OF THE AUTHOR (WHO ALSO SUFFERS FROM THE DISEASE "ASPIRIN TRIAD" OR "SAMTER'S SYNDROME") AND IS NOT PROFESSIONAL MEDICAL ADVICE.

THERE IS NO DOCTOR-PATIENT RELATIONSHIP FORMED BETWEEN THE AUTHOR AND ANYONE READING THIS INFORMATION. AND THE AUTHOR ENCOURAGES INDIVIDUALS TO BECOME ACTIVE AND INFORMED ABOUT RISKS AND BENEFITS, AND TO WORK WITH THEIR OWN DOCTOR(S) ON TREATMENT STRATEGIES FOR THEIR OWN PERSONAL DISEASE.

[Guest guest]

I think what Bob is saying is one of the biggest problems we have because we don't always know what is causing our symptoms and therefore the treatment is not always correct.

I think that maybe what 's doctor means is that there are (1) people who have Samter's syndrome and are not allergic to allergens like cat dander and there (2)are those who have Samter's syndrome and in addition to their Samter's Syndrome they have allergies to allergens like cat dander. Since both conditions, a) true allergy and Samter's syndrome, produce similar effects, the conditions are additive and worsen symptoms.BobTHE INFORMATION PROVIDED HERE REPRESENTS THE PERSONAL OPINIONS OF THE AUTHOR (WHO ALSO SUFFERS FROM THE DISEASE "ASPIRIN TRIAD" OR "SAMTER'S SYNDROME") AND IS NOT PROFESSIONAL MEDICAL ADVICE. THERE IS NO DOCTOR-PATIENT RELATIONSHIP FORMED BETWEEN THE AUTHOR AND ANYONE READING THIS INFORMATION. AND THE AUTHOR ENCOURAGES INDIVIDUALS TO BECOME ACTIVE AND INFORMED ABOUT RISKS AND BENEFITS, AND TO WORK WITH THEIR OWN DOCTOR(S) ON TREATMENT STRATEGIES FOR THEIR OWN PERSONAL DISEASE.

[Guest guest]

Hi,

My computer is down and I am reading the posts from a library

computer but I definitely remember seeing a study in which they did

say that a very, very small subset of Samterites actually have a true

IgE response. It was a study out of England. It will be a while

(several months) until my new computer is done as my brother builds

my computers in his spare time but when I am back online, I will try

and ferret out that study unless someone finds it in the meantime.

I did see the dr. in Albuquerque and I liked him. It was nice to talk

to someone who actually knows about this disease. He is going to try

and help me to go to an every other day dose of prednisone instead of

an every day dose. He also said that I was on everything that he

knows of for Samter's so there is really nothing more he can do for

me but he does want me to go to National Jewish and be under the care

of the pulmonoligist who runs the program for Triad Asthma and the

desense.

I will post more later as my time is running out on this computer.

Has anyone tried pharmaceutical grade fish oil in larger than normal

amounts to check the AA/leukotriene production? I am very interested

in this since I am allergic to the anti-leukotriene medicines.

Will check back in later this week.

New Mexico

Ken West <kenwest@l...> wrote:

> Therefore 's doctor is saying very specifically that there

are TWO

> kinds of Samters -- not just " a matter of degrees " .

>

> I think this claim is profoundly important, so much so that it needs

> corroboration from somewhere. So far, none of us seem to have

heard of

> this concept from anywhere else, so I'm feeling that it is bogus.

>

> regards,

> Ken West

[Guest guest]

Dear Sue,

I think this is the whole point. If aspirin gives us severe to mild

reactions, yet we eat 10 - 200 mg of salicylate in a daily diet it makes

sense to me that if you reduce or eliminate these items as much as possible

then the symptoms so many of us have will decrease or go away. This makes

absolute sense to me. I don't know why the medical profession doesn't

agree with this.

Re: Intolerance vs Allergy (?)

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