OK, my worst fears with the allergist were confirmed. Yesterday I got a voice message (he didn't even bother to talk to me) telling me all of my allergy testing was normal, so he doesn't need to see me unless I have another anaphylactic event.

My tryptase was 5.8, so he is saying that rules out mastocytosis. With no IgE allergies, he is basically dismissing all of my other symptoms, plus that fact that some significant symptoms are improved or gone on high dose antihistamines.

No appointment, no discussion, just Bye Bye!

He obviously does not know or does not believe in MCAD.

My GI doc is going to be doing some testing for me, including biopsies, but I don't think he knows about anything more than textbook mastocytosis either. He will be checking some other possibilities that do need to be ruled out, which is good, but I am afraid he will leave me in the same boat as the allergist.

I'm in northern California. I am not well enough to travel to the midwest or the east coast. I do VERY poorly in airplanes. Plus, I am not sure I could afford it. No way could I fly in and out on the same day, or even the next day, so I will have lodging expenses, and possibly expenses for a caretaker to travel with me. I might be willing to try to pull this off if it was my only choice, and I had a good reason to believe some type of mast cell issue was the main cause of some of my worst symptoms, but it would be a big risk as to how I would make it through the trip. I have spent many, many thousands of dollars chasing diagnosis and treatment, and I just don't have it any more. Physically or financially.

Well, that is the pity party. I am hoping there might be some idea, or someone here on the west coast I could see to take this further. I could tolerate a trip to southern CA, or something that might top out at a 2-3 hour air flight, so I don't get totally trashed by the travel before I even see the doctor. Or maybe there is other testing I should do to make things more clear?

I have already tested:
24 hour 5HIIA - normal
24 hour urine histamine - normal
IgE - 92
Tryptase - 5.8
All blood testing for IgE allergies - negative except for a very few things showing low levels of reactivity.
I show low levels of elevated eosinophils sometimes on my CBC.
My metabolic panels are all normal.
I do show inflammatory markers like C4a that are elevated to very highly elevated (run between 8,000-42,000, normal range is <2830).
Some natural killer cells are very low, below range long term (CD57).
My CRP, sed rates, ANA, etc are all good, and have always been. No lab tests that indicate autoimmune issues, except for elevated anti-thyroid antibodies.
Vitamin D levels are very low, even with supplementing.
I did show osteopenia 6 years ago, just had a new bone scan today, will find out if it has progressed.

Why would I have such good responses to antihistamines if these symptoms are not somehow histamine related?

My shortness of breath, which was bad even sitting, is now only noticeable if I am walking very fast.
My chest pain is gone unless I slip and forget one of the antihistamines I am taking.
The trouble swallowing and throat swelling is gone.
The tachycardia is gone, as is the easily elevated blood pressure, and the fast swings between high and low.
My flushing is hugely reduced.
The rash I have had on my forearm is healing, the redness is pretty much gone, and even the thickened tissue is looking better. All of the general itching is much improved at higher doses of Zyrtec.
The severe, long term constipation and bowel paralysis is better, almost gone.
I am still having swelling in hands, feet, and bowel, and haven't figured out if that could be corrected with this, but I wonder if something like Gastrocrom might help, or Singular.

Any really good ideas? Does anyone know someone who is good with mast cells out here? The only doctor I know at Stanford does not take people until they already have the diagnosis, and even then prefers to see those who have aggressive disease. I don't think what I have would be considered aggressive. I am very disabled, but am not a shocker, so can manage life fairly OK if I keep my life contained within the circle that I know is safe for me.

Heather is right about that doctor. Move on! Next! You could always call around and see if some doctors offer an interview or consultation. You could print out all the symptoms of MCAS and say ....look, you see how many of those symptoms I have. I think I deserve to have this at least considered or looked into further. I don't feel like myself, and I know my body.
This is the approach I took and it worked for me.I called around and asked if the doctors have any masto patients. I got a second opinion from another dermatologist. A female doctor in her 30's.
I also just saw a new allergist he was also in his 30's and he was pretty good. I was even telling this new allergist how the RAST testing was negative but I clearly had issues with some foods and that the other doctors before told me I shouldn't exclude those foods because I'm not allergic. He said NO,no,no don't ever let a doctor tell you that you can eat certain foods you clearly have a sensitivity to. He said food elimination diet is better than any test they can do. I feel like sometimes the younger doctors are a little more open minded and willing to consider new information and studies and diagnoses. I know there is definetly something to be said about older doctors with tons of experience. This was just my experience, everyones is different.
Melissa

Heather and Melissa,

Your support really helps! I actually don't have much problem with a doctor admitting they are beyond their knowledge with something. It DOES worry me when they write a report saying NOTHING is wrong.

Luckily my primary and specialist both know me well enough that they believe me.

Yes, the endoscopy is in July. I am supposed to have some other tests before then, including a 24 hour esophageal monitor. Doesn't sound like much fun, but it will differentiate other causes of the chest pain than only histamine, so that we don't miss things that could lead to more serious problems later on.

Heather, do you know where the antibodies to high-affinity IgE receptors can be tested? I can probably get one of my doctors to order tests, as long as I know where to get them, and a little bit of what they mean. My doctor who treats my infections is open to learning about mast cell problems, but is just starting to look at papers I have given him.

Would taking Gastrocrom change the results of any of the tests the GI doc will do? I've had most of these symptoms a long time, so if leaving it alone a little longer will help me get a diagnosis, I am willing. Otherwise, I am game to give it a try, and I know one of my doctors would rx it, as he already mentioned it as a possibility.

Melissa, I hadn't checked the PNW group, as I thought they were much further north. I will track them down and see who is more in my area. I have wondered if I should try a dermatologist. I don't have any strong classic mast cell type rashes, but I have a rash that has been called eczema, but it has been in one place for almost three years, and I have never had that happen. Usually they come and go. I read somewhere that some eczema rashes can also show mast cell issues on biopsy.

Anyway, I won't give up! But it does help to come here and find how other people have made their way through the maze of diagnosis.

Hi Susan,

I've also had doctors who haven't believed anything was wrong with me.  So glad I didn't believe them!  I don't know if they'll be able to help, but I would call Dr. Gotlib's office at Stanford and speak with his nurse/assistant, Len.  Maybe she'll ask him for the name of a local allergist who understands mast cell disease, since he can't treat you.  If you don't find anyone from them and if the NW group doesn't have a name, you might want to call somebody at TMSforacure and see if they have a referral or know someone with similar problems in your area.

Hi Marie,

That is good news about the testing. Labcorp here will sent tests to National Jewish Hospital. That is where they did my tryptase and C4a.

And if the test tells the doctor what it means, even better!

Joan, I tried contacting Dr. Gottlieb's office for a referral, but have not received a response. It was a bit of a long shot, I know doctors don't like to do referrals if it isn't their own patient they are referring. I did call and email Lisa from the PNW group, so I am hoping she has someone that I could see.

Heather, thanks for being honest about the gastrocrom. Hard as it can be, I would rather get the answer right, than have the short term relief now, if it might throw the results off.

The GI doc even wants me to stop all of the antihistamines for 3 days while I do the 24 hour pH test, so he can tell what is going on. A little scary, but since I am not a shocker, I am willing to give it a try, if it will give him clear info on what is happening there. I know that acid levels that are too high in the esophagus are a risk factor for cancer, so it is important to find out what is causing the trouble there. It could be excessive acid, but it also might be angiodema, spasms, or other factors causing the chest pain. Between the pH test and the manometry, he should have a better picture.

And thanks again for the reassurance about the records. It has been a while since I had to do the rounds of the "It's All In Your Head" doctors, and had forgotten how stressful it can be.

Hi Ramona,

Thanks for worrying about me!

I know that with masto you don't usually go off. I am thinking it would be safe for me, for two reasons. One: I don't shock. Or only one and a half times, so far.  

Two, I think it will make a difference for this test. The doctor wants to find out if I have high acid, or whether my esophagus is spasming. Neither is happening while I am on Zantac, but he needs to find out whether the end of my esophagus is being eaten up with acid, or contracting because of histamine. for that, I am willing to give it a trial. It isn't a allergy challenge, so it won't be making me worse than I was before I took the antihistamines.

Now, if I go off and things become impossible, that is information, too. I have an Epi pen, and I have lots of the faster acting anti-histamines, so hopefully, I will be safe. And I should get a script for a tryptase in case I do get really triggered, which might be useful. And maybe that big ole orange bottle to collect urine. Who knows, maybe it will be an epiphany!

Anyway, I don't recommend anyone else does it, but I am hoping I will be OK.

Hey, good news! I was told my bone density scan is normal. If it is really true, then my bone density has improved, probably because of the estrogen I take. So something is working out well.

Susan, this is your body and your life--and I back you 100% on whatever you want to do with your testing. Just be careful and know we love ya.
Ramona