Haaaaaa. On my, someone is playing a big April Fool's joke on you, except it's not April. YES, people with MCAS (that is the more current term used for MCAD) DO get hives. That is one of our big red flags to our doctors that we have a mast cell condition. Will every patient get hives? No, because we all experience different symptoms. However, hives are very common for both MCAS and Masto patients.

Hope this helps!

Crystal,
A dermatology fellow once told me my flushing redness was not at all considered to be hives, becasue my redness does not itch.  He felt all hives had to itch.  I have since learned in the mast cell world, that is not true.  As Lisa  and others on here like to point out mast cell disorders  do not follow any rules, they make up their own rules.  I suspect this is why so many docs "don't get" MCAS.  Conventional medicine is based off of generalities and probabilities and liklihoods.  

From what I read any number of skin related symptoms (hives, rash, itching, swelling, thorat closing, sinus dripping, etc) fits that criteria in mast cel disorders.  

Lyn

The best way to prove that your hives are related is to get a skin biop from your worst hive, and find out how many mast cells there are per mirco frame.  Mine were something like 16 or 18.  My dermotologist did the biop.

Crystal, I'm sorry that your consultation with Dr. Castells was disappointing.   She's spread herself very thin and I think that this is likely quite a frustration to her, in my opinion.  She's normally a very attentive person.  I'm sure that she felt bothered that her staff let a patient slip into the consultations who should not have been there for they are trying to narrow down to only potential masto patients due to how overloaded they are.  But I think  and urge you that you send to her an email, with Dr. Greenberger copied, explaining the fact that she did not receive all of your info and asking that she consult with Dr. Greenberger and reconsider your case.  

My reason for saying this is because the ICU diagnosis is indeed something that some of us end up having when we are autoimmune masto patients.   I have this finding.   Do I get hives,  almost NEVER!   Nor do I have any angioedema.   EVER!   But what that finding means is that I am allergic to my own blood.  And this is an area which Dr. Castells is interested in and I think that were she to confer with Dr. Greenberger and have access to your documents that she may reconsider your case.


As to the C-Kit mutation, there is more than one.   However, I do not know how many of them are readily able to be tested by the commercial labs.   And you are only going to test positive when they test an MC which is defective - a normal MC, which you do have, will not show the defect.  Makes sense huh!   However, for those of us with low tryptases, our MC burden is low, which means that in order to find the MCs with the defects upon them, a very, very sophisticated and EXPENSIVE bone marrow test must be done where the bone marrow is purified and so then more MCs are available to test.   Then they may find the defect, but without doing this testing, the chances are you will come back with negatives.  

Listen, Crystal, when a doctor like Dr. Castells is doing the testing and she says you don't have masto based upon the testing which she has available to her, what she is saying is that at this point in time it does not appear that you have SM and may not have MCAS, however, that does not mean she's negating the fact that you are sick and needing attention.  Yet I really think, since she's an expert and also a very caring doctor that if she knew that all of your documents had reached her that she would be very bothered in perhaps having jumped the gun without knowing it.  

So please consider doing as I've suggested and write to her with Dr. Greenberger copied and give her another chance to reconsider your case.   Again, don't worry about the negative c-kit finding, it doesn't rule out a MC disorder, it only means that on the MCs which were tested, they were normal MCs.   That's all.  

If it helps you any, I haven't had the genetic testing on my MCs yet.  I'm not even sure as to how to go about getting this done here in Brazil!!!  It's a rather daunting process to tell you the truth.   However, Dr. Castells saw my biopsies and saw all of the pathological damage that is going on even though we can't find a single MC aggregate.  Yet I have elevated histamine levels and the pathological damage we've found lines up with masto and so we know that the shadow has been cast.  We just can't find the thing which is casting the shadow!  We found the MC aggregates in  my son, however, so it was confirmation.  

Sometimes, Crystal, it takes YEARS for the truth to come out.   So don't give up hope, continue pushing for the TRUTH!!!!


I hope this helps!!


Lisa

Hi Crystal,

I'm just speaking from my own personal journey.  I have autoimmune chronic urticaria and have all of your symptoms.  Every doctor I went to brushed me off (as we all know about this).  

I watched a movie called "Fat, Sick and Nearly Dead" and the guy in the movie has autoimmune chronic urticaria.  He began a liquid diet of just fruits and vegetables.  I decided to try it out of desperation.  I think I did it a few weeks and then started adding food back in.  Chicken, rice, yams, Utz sour dough pretzels.

Also was taking Zyrtec, Zantac and Ketotofen eye drops.

Then I noticed I couldn't even get out of bed from fatigue.  I always have had chronic fatigue but it got worse.  My dad said maybe it's the antihistamines - so I stopped taking them.  No bad reaction.  I stopped the Zantac.  No bad reaction.  I posted on here that I think I went into remission.  

So here I am a year later feeling much better and not on any meds.

I had contacted Dr. Castells and told them I had confirmed autoimmune chronic urticaria and she agreed to see me but my urine test got lost and I never sent her my paperwork and my husband lost his job so here we are.

She is willing to look at lab reports of people with autoimmune chronic urticaria.  

We are just as sick as people diagnosed mast cell activation but their must be something different in our blood work that the she sees.

When the allergist said I had auto. chronic urticaria she acted like it was no big deal but living with it, I know it is debilitating.

Hang in there.  I hope you stabilize soon.  

Pam