Hope, I understand your thoughts, I had the very same! Youīve got a point, the use of the antihistamines end up making you more stable and with that stability will give you less degranulation and therefore "influence" your results in supposedly not allowing the mediators to be found. This is indeed possible. HOWEVER....
We test our mediators in two ways, one is as a baseline the other in crisis. Itīs important to try to get BOTH for by having both not only does the doctor gain an understanding as to your daily condition, but also as to the extent of your reacting.
Yet, it still doesnīt justify going off the meds.
By establishing a baseline, you see whether the degranulation is on a chronic basis or not. This is acutally MORE important than in crisis because when you have a reading of a baseline of chronicly high histamines or chronicly high tryptase, this means that the MCs are constantly putting these mediators out. Itīs confirmation of Mast Cell activation. The tryptase does this as well and it has the added benefit (if you can say that) of telling the doctors what your MC burden is.
Now, this next statement is conjecture on my part. Iīd love to know if this is really true, but I suspect I may be close.
Letīs say youīre on constant antihistamines and leukotrine blockers and your urine histamines return high as a baseline. Well, then your chronic degranulation is so high that thereīs no questioning the presence of some kind of MC activation. You have a positive confirmation and indication of a mast cell disorder then.
But lets say youīre on antihistamines and the urine histamines return normal. The most likely even if you were NOT taking them, you tests would still probably come back within the normal ranges. I think that if this were my case, THEN would talk with my doctor asking that I stop taking my antihistamines in order to know what the true situation was. From what I understand, not taking the anithistamines will not affect the levels of histamine themselves within the urine, but what it does is take away the stability you had and this will then allow you to be more reactive and it would then allow for a bit more of mediators to be released. However, I rather think that this would still not be in great quantities.
Now, we here have heard that Dr. Castells will tell her patients to NEVER go off of their antihistamines. Itīs often too dangerous for us to do so and doesnīt justify the risk we take. This makes sense, for if you are soooo unstable and go through so much anaphylaxis, it will make no sense to try to measure the mediators if you die in the process!!!!
Therefore, she tells her patients to NOT STOP THEIR MEDICATIONS!!
Yet, this may not apply to every patient in that there are those who are leakers and they donīt have half the fun
that the shockers have, so I think that each patient needs to SPEAK WITH THEIR DOCTORS in order to know what is best for them!
Lisa