Hey ya'll!

My name is Amber, I'm 28 and very very very FRUSTRATED ! I have been battling with what I thought was an unknown food allergy since college 2003. I seen an allergist in Michigan who skin tested me for food allergies and did a scratch skin test. Both tests came back positive. He didn't think it was a food allergy so he had recommened me seeing and autoimmune specialist/hematologist to be worked up for mastocytosis. I didn't flow up with either because shortly after that appointment I had to move south for my husbands job.

Once I was settled here I found another allergy specialist who did some bloodwork for food allergies and gave me a script for a tryptase level to be drawn 2-4 hours post reaction. My bloodwork for food allergies was negative and on april 27 i landed in the ER with an allergic reaction. They drew my dang tryptase level as soon as I got there instead of the 2-4hr post reaction window. Sooo needless to say that came back negative (low). My doctor then basically said he gave up he didn't know and referred me to a GI doctor.

I have a friend back home that is a GI doctor and he insists I get worked up for masto based upon my symptoms. I mentioned this to my current allergist and he asked me, "do you break out in hives if you scratch your skin?" I said no? I told him that I dont break out in hives, but it stays red and raised for a long time and is itchy at the site. He said then I don't have Masto.

Here is what causes these reactions:
Food mainly when I go out to eat, stress, anxiety, mixing hot and cold food or drinks, hot weather, and exercise.

Symptoms:
Starts out with TERRIBLE and I mean TERRIBLE belly cramps hurts so bad. When I get the cramps its like a warning I know I have 5-15 minutes maybe 20mins if i'm lucky to find a bathroom. I then get diarrhea with the cramping. It then moves into my resp track my chest gets tight, I get congested and wheezy. I break out in a rash usually starts on my chest and neck goes to my thighs, butt, arms , belly ,and back. My heart races out of control, I get flushed and dizzy. This all lasts for hmm anywhere 35-45mins and the wheezying for hour or so.

Ever since these reactions i've had to start taking 100mg of toprol to control my heart rate, i take OTC meds for what feels like consistant headaches, and I've tried xyzal which was a waste of time didnt stop my reactions or make them less frequent. I carry an epi-pen just in case.

I noticed that if I take 25mg of benadryl about 30mins before i eat, 25 with my first bite and 25 after dinner along with 3 tabs of immodium i can at least make my reaction not as terrible...however doesn't always work. If i know i'm going to the gym i load up on benadryl also. This is getting old fast. not only am I getting a tolerance to the benadryl but it makes going out with friends and date night with my husband a total drag. I am sick of worrying over whether or not im going to have a reaction and if there will be a bathroom avaliable. Sick of worrying if im going to spend the evening miserable in the bathroom embaressed.

So my question to ya'll is. Do you think seeing GI doctor will be a total waste of time? Should I pursue a hematologist? Should I get a second opinion from another allergist? Are these even symptoms of masto? Were you as frustrated as I am with finding out what in the H is wrong? I am over it!!! ugh!

Welcome Amber!!
I agree with Heather, you need a good GI DR and fast. There are some types of Mastocytosis that itch and swell when you scratch your skin--but that is only 20% of people who have this disorder. Obviously that DR was wrong and didnt know it.

Mastocytosis is a disorder of exclusion--which means they need to test for some other diseases first, exclude those while tesing for things that ARE positive in Mastocytosis. While you find the right DR and are having these tests done,‭ I would give you some suggestions-, just in case it is masto--to help you find your way and make you more comfortable.

First lets talk doctors. where do you live? (state) We can suggest a doctor for you if we know where you are. Next, if you have a reaction and are in the hospital, that tryptase level should be done after 1 hour BUT before the third hour, so they werent completely wrong there.  You also need a tryptase level when you arent reacting (called a baseline). Again, a negative tryptase level does not mean you dont have it, some of us are different.

For your own benifit, look up

Welcome! Ramona's right, all the people on here recommend the low histamine diet. No left overs, cheese, vinegear, soy, etc. Google low histamine diet. Just give it a try. I know it can be overwhelming at first to think you can't eat all those foods, but there are plenty of things you can still eat. The low histamine diet really helps. I did for me.  Alcohol is a big trigger for masto. For me when I drink alcohol it didn't hit me till about 6 to 8 hours after I drank and I would be vomiting and having diarrhea. Not always, but as the years went on, it seemed to get worse and worse to the point when 1 glass of wine left me hung over for 1 to 2 days. But I wasn't hung over it was the mast cells. I know it does suck, no more girls night for drinks or sitting in the hot tub.(heat is a trigger) So now we go to movies or plays or shopping or spa day. Best of luck to you. Oh and the zantac does help a lot. I take 300mg twice daily.
Melissa

Hi Amber,

A few more things.  When you go to the GI doctor's office, take with you information on Mastocytic Enterocolitis.  You can find that info on the NIH Rare Diseases website.  I can find the link if you have any trouble finding it.  BTW, I've done the treatment (Gastrocrom, Zantac, probiotics, L-glutamine) for ME, and it helped me a lot.  

Also, it wouldn't be surprising if the tachycardia turns out to be related to mast cells.  That is something that happens to many of us.  Two problems that should be ruled out, if they haven't been already, are carcinoid syndrome and pheochromocytoma.  They are 2 of the very few problems that cause flushing and similar symptoms.

In case you don't know, there are several types of histamine.  The ones causing problems in mast cell disorders are H1 and H2.  There are different types of meds used for each, which is why Allegra and Zantac are recommended together.  Allegra (or Zyrtec, Claritin, Benadryl, Vistaril, etc.) are used to inhibit H1 histamine.  Zantac, Pepcid, and other H2 histamine blockers are used to inhibit H2 histamine.  There are other mediators that your mast cells could be dumping into your system during an attack.  Some people benefit from Singulair, which inhibits leukotrienes, and some people also benefit from aspirin (if not allergic and don't have stomach upset from it) or Tylenol to inhibit prostaglandins.  Both of those are involved in inflammation.

Keep us posted as to how you're doing.