Hello, my name is Kristi. I live in St. Louis, MO where I am desperately trying to get a diagnosis for worsening anaphylactic reactions to more new things every day. A little background on me: I'm 40 and have always had bad allergies to cats, mold, dust mites, pollen and have had a lot of sinus/ear infections due to them. I've had to have ear tubes put in 3 times since 2004 to relieve the infections and I was getting allergy injections up until last fall. Over the last year my allergies seemed to go into overdrive. I was taking allergy meds, sudafed and mucinex constantly. Once when I was being treated for another sinus infection I had a reaction to the antibiotic Bactrim which gave me hives and mouth and throat swelling. After that I started having anaphylactic reactions more and more when I got my allergy injections (mouth/throat/face swelling). Sometimes they could stop them with prednisone/benadryl/pepcid and sometimes they'd have to use epinepherine. But once I left the office I was fine...until one day in November. I was fine when I left, but later that evening it started up again when I ate something. That started a 2 month jag of severe, almost daily reactions to foods, beverages, heat, cold, stress, medications, you name it. I ended up in the ER twice, once by ambulance. My symptoms during these attacks seem to change with each attack. The worst attacks bring on sudden swelling in my mouth, a sharp drop in blood pressure, messed up vision and nearly passing out. Other attacks bring loud ear ringing, burning red eyes, flushed face and ears, warm rashes on my neck/trunk/legs, racing pulse, hands/feet go cold & numb, stomach pain/nausea/heartburn, bone/joint pain, visual disturbances/dizziness, a feeling of tightness in the skin on my neck and face, and increased mucus production. The symptom I seem to get with all attacks is swollen throat, roof of mouth, and inner ears. Oh, and in the last 2 years I have become covered in spots on my face, chest, arms and legs. All of these symptoms have me feeling miserable, scared and frustrated on a daily basis. I pray every day that I can get this under control but I am losing hope.

When all of this started in the fall, my allergist was not helpful at all. He gave me an epi-pen and said stay away from things that make you react. Two more allergists I saw ran bloodwork (tryptase, complement, CBC) My tryptase was 2, 3 and 5. My complement was normal, but my white blood cells were high and my basophils have been high on every test. They said that shows I am having allergic reactions but that I didn't have mastocytosis because my tryptase was normal (the tryptase was never drawn during a reaction). One of the docs tested my immune system and my IgG total and IgG subclass 1 were low, which would explain the frequent infections I get. I was positive to peanut (mildly) on RAST testing although I've never had . Serum IgE was 140, normal.

I sought ought the head of allergy for Washington University in St. Louis, our biggest teaching hospital/university. He did skin testing. I couldn't believe that I made it 4 days without antihistamines, but I ate next to nothing to be safe. I came up positive for all the pollens, dust, mold, cats like normal but also to peanuts, soy, peas and cauliflower. That surprised me, but I am still reacting even when I avoid those things. He also did more RAST testing which I haven't gotten results for yet. I am going back to see him early next week and I'm preparing myself for him to tell me what all of the other docs did....bad allergies, avoid triggers. I am wondering how to ask him to please look further because I am miserable and avoiding triggers isn't enough. Just last night I had another very big reaction to Augmentin. I had the same med last October and did fine, but last night I shocked. It was one of my top 5 reactions in severity. I didn't use the epi pen and go to the ER because it was late and we had no one to watch our kids. I know that is stupid and I wish I had gone and had my tryptase drawn. Instead it took hours and hours of angioedema, high blood pressure, and feeling that someone had poured acid down my throat into my stomach. I took zyrtec, benadryl, pepcid and prayed for it to stop. I seem to be back in a very reactive state since I had surgery to put in another set of ear tubes last week. Before the surgery I asked them to put benadryl in my I.V. and I got that weird feeling of swelling in the roof of my mouth and throat when they administered it but I did fine with the anesthesia.

I keep wondering and hoping there could be some other reason for all of this. I'm going to ask the allergist Tuesday to test me for carcinoid. I'm also wondering about autoimmune condtions. One other big piece of medical history on me that I doubt is important here, but I'll mention it just in case. I have a mutation on a gene that causes hereditary breast and ovarian cancer called BRCA2. Due to the high probability that I could develop these cancers, I had a prophylactic mastectomy and hysterectomy. I take a low level of estrogen replacement in patch form. I wonder if any of this could be related to hormones?

My normal daily meds are claritin and pepcid in the A.M. and zyrtec and pepcid in the P.M. I know that seems like undermedicating, but I have had problems with allegra and zantac. I also have felt strange the last few times I've taken benadryl. I'm terrified of becoming sensitive to that, cause then what do I have to fall back on? After the reaction to augmentin, I'm afraid to try another antibiotic for my sinus infection, yet I know if I'd get rid of it, my reactive state might calm down. My husband wonders if the augmentin only caused a reaction because I seem so highly reactive right now. Taking the antihistamines doesn't seem to be enough to stop the reactions and often doesn't fully stop them once they start.

Thanks to all that have taken the time to read my novel  Sorry it was so long. I appreciate all of the knowledge you share on this board. It has helped me feel less alone and hopeless.

Kristi

Kristi, my heart goes out to you. Im so sorry youveb really been through it! Im so glad youre here with us now... You still need testing done but those antihistamines arent going to hurt you to try more.. you ma become a bit fried out but you will get used to it.

I agree with Debbie 100% !!  Please follow her advice, its excellent and Im worried about you. Remember that not all mast cell disorder people will have a raised Tryptase.. but still have them draw it if you have an episode. And remember that mast cell patients have some allergies but more triggers than allergies--which react exactly the same and are treated the same.
Please let us know how youre doing... we DO care and we're here for you!!
Hugs
Ramona

Kristi,

I forgot to say that you should NEVER go off histamine blockers to do allergy testing. Any allergist who knows mast cells knows that the histamine blockers won't affect your results. Plus, it really isn't safe for you to do skin testing. We tend to have the blood tests for allergies. This advice about not going off the meds is standard advice from the top mast cell disease doctors (there are only a handful of them). Also, I hope that it is has occurred to you that those allergy shots were probably pushing you deeper into the problems that you were having. I wouldn't advise ever doing allergy shots again if you have mast cell disease. Unfortunately with this rare condition, we have to be our own advocates and realize that most doctors can be WRONG in their advice to us. It boils down to the fact that we can feel confident in th eadvice coming from the few mast cell disease researchers, but we must remain aware and vigilant regarding advice from other docs because no matter how nice they may be, they don't know a fraction about the condition as the researchers do. So, we need to consider the local doc's advice and then decide how to use (or not use) it.

Hi Kristi!!

I'm sorry for how things have been for you!!   You sound like you're really going through the grinder trying to find answers.  I hope we can help you!


As to your surgery, the mastectomies and hysterectomy, you could have some kind of connection with this, but not quite like you think it might have.

There are some cases that are cited in which women who had masto found great improvement after having hysterectomies.  The removal of their ovaries helped to stabilize their disease for estrogen has been connected to mast cell mediator release.  However, although I've not found an article that claims the opposite, that of the surgery being the cause for the masto.   Mastocytosis can not be caused by a hysterectomy, or more like, the removal of those organs and thus the loss of those hormones isn't the issue here.  Yet, the surgery itself, that of the trauma your body suffers with the surgery be it either the mastectomies or the hysterectomies for the surgical trauma itself could have triggered the dormant mast cell disorder, or the anesthesias used could have done it.   I have spoken with a masto authority, Dr. Cem Akin, and this is the answer he gave to me.

You see, Kristi, it was with my hysterectomy that my masto came out of hiding.  It was dormant and nobody knew, including me, that I had latent disease waiting for something to wake it up.  A hysterectomy is a very stressfull and physically traumatic surgery and it takes a lot out of our bodies.  I kept my ovaries, but just the trauma of the surgery itself was enough and my body began to go crazy almost immediately following it!   A direct line was draw between before and after that not even my gyno had doubts.  He knew something was wrong with me and that it was not emotional.  Eventually he was the one who had to go hunting down my symptoms and what they indicated and the suspicion for masto and carcinoid were raised by him.


Kristi, I had to go through a great deal to find my answers, and part of the reason was the hysterectomy due to the fact that many doctors thought I had lost my sanity.  They couldn't believe that a woman could opt for medical reasons to remove her uterus, but I had fibroid tumors and the risk of breast cancer in my family and so I made a medical decision to protect my health.  I'm sure you've had to battle many of these very issues yourself.  It must not have been easy to make the decisions you've made!!!  

But your case seems to be different in that you seems to have had issues prior to your surgery and this is important.  My case has an autoimmune element to it and this has an important role in my masto, but because I have no spots, this forced me to have to go down the route of seeking out the carcinoid syndrome.   You do have some testing which needs to be done, both looking for carcinoid and masto.  

So, I wouldn't ask your allergist to run these exames, I'd be looking for an oncologist who is knowledgeable in carcinoid tumors instead for they are hard to diagnose.   You need to have two major tests run, but there are other cancer markers which need to be run as well.  The 24hr urine 5-HIAA test is for methyl-serotonins.  You also need to test blood serotonin levels and also that of Blood levels for Chromogranin A or CGA.   These are the major markers for Carcinoid.

As to masto, you need to see a dermatologist and have them go over you for any signs of skin involvement.  However, that tryptase level you have is, although in normal ranges, is considered higher than the average person.   There are other things which can elevate tryptase in to the 3, 4 and 5 ranges and smoking is one of them.   I was just speaking with a researcher in mast cells and he told me that my reading of 4ng/mL was elevated above that of the normal person.  A nromal person has a reading of <1ng/mL!  So that shows you how much higher you are than the normal Joe.   But it's not so high that it's diagnostic for SM.   Yet, it is diagnostic for MCAD and that's because they are finding other forms of the disease where the typtase is low.

As to the benedryl, you may want to chose another form of the medication.  You might be reacting to dyes or fillers.  

The trick here is that you're needing someone who is an excellent immunologist to do some serious sorting out with your disease.  You may indeed have a mast cell disorder, but it's too soon to say this and you don't want to convince yourself of anything until things are more apparent, so keep your mind fully open and don't allow your mind to convince yourself of having the disease until you've got more PROOF of it.  

If, you were to think of travelling to see one of the masto researchers, Dr. Lawrence Schwartz would be the man to see.  He's in Richmond Virginia and he's an excellent immunologist.  He would know how to sort through your true allergies and anything which might be a mast cell disorder.

If you want his contact info, just send me a PM and I'll be glad to give it to you!

Lisa

I cannot seem to locate the list of tests by Starflower. Can someone please point me in the right direction?

Thanks!!

Kristi

Hi Kristi,
For many years, I had several doctors tell me that they didn't know what was wrong with me and even that my symptoms were psychosomatic , or in my head, before finally getting diagnosed with mast cell diosrder.  Thankfully, I live near Boston and my infectious disease doctor brought Dr. greenberger from Brigham and womens hospital into the emergency room to examine me.  The telltale test for me was called Dariers sign, which involved the doctor rubbing his thumb along the top of my back. My back became very inflamed and stayed red for a long time, which is abnormal. Here is the definition: Darier's sign is a change observed after stroking the skin of a person with systemic mastocytosis or urticaria pigmentosa. In general, the skin becomes swollen, itchy and red. This is a result of compression of mast cells, which are hyperactive in these diseases. These mast cells release inflammatory granules which contain histamine. It is the histamine which is responsible for the response seen after rubbing the skin.

I am not a doctor, but I have gone through four very serious hospitalizations before being diagnosed.  Every time I go to see Dr. Greenberger, I see patients that have come from all over the country.  I recommend that you try to find a doctor nearest to you that has experience with mast cell disease, because many of them have no idea and dont have any interest in learning.

I hope this helps and that you feel better soon!
Laura

Starflower--thanks for the link.

Lisa--I would love for you to send me a copy of your blood test spreadsheet. That's a great idea.

Laura--thanks for your input. I forgot to mention that back in December when this all got bad I read about skin spots being an indicator of SM. I went to my dermatologist and he biopsied two of the larger more pitted-looking spots which came back as age/liver spots=no mast cells. I'd say maybe 1/4 of my spots look like that, the rest look more freckle-like. Maybe I need to have a few of those biopsied. They make up the majority of my spots. I'll add that I was never a freckly person until a couple of years ago. The dermatologist also scratched me to see if I had Darrier's sign. I didn't. It sounds like you've been through a lot with four hospitalizations. I hope you are feeling better now. I am ok with traveling to an expert, just unsure who and how to get started.

Josie--you said your tryptase is negative. May I ask what the number is? You asked what I'm eating. Well, I have existed on mostly rice chex and an occasional potato for the most part since this began. The dr said I have to be brave and start branching out and trying new foods, but every time I do it backfires. It stinks. I'm so frustrated over not being able to eat. Surprisingly, I've only lost about 5 lbs, but I'm fairly thin to begin with.

Thanks Ladies. My husband is so happy I finally have someone to talk to that understands what I'm going through.

Kristi

Kristi,

My tryptase is 4!  I'm going to be restesting it next week.  You don't need to worry about SM until you've got a baseline reading of over 20ng!  The higher the number, the more mast cell burden there seems to be.  The correlation is proven, although according to Dr. Castells, there is another mediator related test which may be more reliable, however it's not commercially available yet and this may take some time.  Some of us have low tryptase levels and yet they don't know why.  it may be that it's due to the form of masto we have, but then it may not be, they aren't certain yet.  However, what they do know is that those patients who are true SM patients have high levels and so, please, get it out of your head that you are having anything to have to seriously worry about yet as far as the mast cell neoplasm goes.  If you had any kind of aggressive SM then YOU'D KNOW IT and so would your doctors!   Your CBCs would be SCREAMING out due to all of the alterations they'd be showing and they'd have hospitalized you by now and you'd also be diagnosed by now.  

Remember this - aggressive disease, be it autoimmune, or cancers or any other kind of disease SCREAMS out at the doctors!!   If they aren't jumping 10 feet in the air when they see your tests results, then BE AT PEACE.  You may have something wrong with you, but it's not so seriously wrong that it's life threatening.  Masto, even though it's a neoplasm is such a SLOW GROWING neoplasm that it's not considered an aggressive disease and the ONLY TIME it's considered cancer-like is when it's in it's aggressive form.  Smoldering masto is considered threatening, but even then, it's not yet crossed over.  

So, from going to 2, 3 to 5ng/mL, this is not a big jump and it's not important.  You could have been more reactive and this would reflect that higher activity, but it would not cause any doctor to jump out of his skin, which is why you have doctors who aren't even blinking!!  

So, be at peace, you're doing okay!!!


Lisa