Yes, this has happened to me too!   As a masto patient I can't take any kind of radiographic contrast without first being pre-medicated.  I also must have an anesthesiologist on hand and be hospitalized due to how bad my reactions can be.   However, the pre-medication protocols designed for masto patients keep me safe during the procedure and the hospitalization is to keep an eye on me afterwards.   This is because I have a known history of bad reactions.

Yet, this is not the case for every masto patient and we are all different in this respect.

However, there are indeed some people who are naturally allergic to these dyes.  These people can't eat any kind of shellfish and they will test positive for IgE mediated allergies to iodine related foods.  So these patients will indeed react to this contrast and must also be properly pre-medicated in order to undergo these exams.  

Yet, this does not mean that because you reacted to the contrast that you are have a mast cell disorder.  You may be truly allergic to iodine and shellfish.  You would have to see an allergist and have some blood testing looking for the IgE antibodies to these foods first.   If, however, you test negative for  IgE antibodies for iodine and seafood, then there is indeed disease behind these reactions.   There are two distinct diseases which can cause anaphylactoid reactions.  Anaphylactoid means it looks like true anaphylaxis due to allergies but in truth it isn't for the IgE was negative for allergies.  It means that the mechanism behind the reactions are disease and the two major diseases responsible would be the Carcinoid Syndrome or Mast Cell Disorders.

If you have done some testing with your allergist and he had done some blood testing for IgE antibodies and it's come negative, then your doctor must send you to see several different doctors.   You need to see an oncologist who is specialized in Carcinoid Tumors to investigate the carcinoid syndrome, and you should see a dermatologist and an immunologist looking for the mast cell disorder.    These two diseases can be very difficult to investigate properly and so you need to see doctors who are known specialists in these diseases in order to find out what is happening with you.  

What kind of testing have you had and what are your doctors thinking?  They must have a reason to put you on the masto meds.  Tell us a bit more about yourself and perhaps we can help you.

I hope this helps!


Lisa