First I'll start off with my health hx:  Crohn's disease diagnosed in 99 when had to have emergent bowel resection.  They took my entire ileum (end portion of small bowel) and cecum (beginning 6 inches of large intestines).  Since then I've had a lap removal of gallbladder, lysis of adhesions, and abdomenal abcess removal x2 (which was subcutaneous with removal of stiches from bowel resection that never dissolved...they removed these sutures at the time).  
Other health issues include:  migraine headaches, gi bleeding,  daily abd. pain but stopped taking Crohn's meds 5 years ago without too many problems, elevated bp at times but never dx with htn.

I am a hard working 32 yo man who has always worked no matter how sick I've felt...even  worked day after surgery.

In January I started having outbreaks of hives all over my body with intense itching and burning.  It happened  several times a week and for no apparent reason.  I tried to tie it to food or environmental exposures and couldn't find any correlation to these outbreaks.  My wife is a nurse and had me take Benadryl and that seemed to take care of it.  In Feburary they started coming on more frequently and more intense...my hands and feet started feeling like they were on fire and swelling.  Then they progressed to angioedema where my ears, face, tongue, and throat swelled....so finally off to the family doctor I went.  He gave me a Rx for epi pen and set me up with an allergist and immunologist.  I got into see him in March.  He did all kinds of labs and allergy testing.  I am not allergic to anything per scratch test and per blood testing.  He put me on several antihistamines, prednisone, inhaler as he thought I had asthma and thought it would fix me.  Well, it really didn't help entirely but it did decrease my episodes to weekly instead of almost daily.  I started trying to pay closer attention to when they happened and what I ate, did, ect.  The only thing we could connect it to was that after eating  if I had to poop and couldn't get to a bathroom fast enough I'd have severe abd cramping.  Then my ears would start burning and swelling and then my whole body was on fire inside and out,  I would start to have tongue and throught swelling and difficulty breathing...sometimes with wheezing and sometimes without.  The doctors were all confused because they weren't sure why the meds weren't controlling this.  So every time I went to the doctor we added new meds....did I mention that I hate taking meds and if I weren't frightened for my life I wouldn't be taking anything?  They started looking into things  more and more lab tests.  Luckily on one of my office visits I had a reaction while in the office and they actually witness my anaphylaxis and could dx it.  They drew a histamine level right then and it was sky high....not sure now why they didn't draw a tryptase level.  So then we started trying to rule out all of the bad boys (carcinoid, pheocromocytoma, masto).  He dx me with IA but said it was peculiar that he couldn't get me controlled with all the meds and that my gi involvement was strange too.  He had me go back to my gi who I hadn't seen for 5 years to get a colonoscopy.

So....after all the testing we found:
24 hour for metanephrines were elevated
24 hour urine 5hiaa  normal
WBC always high-  range from 12-20's
PLT's on higher end of normal
HGB normal
liver enzymes elevated
bilirubin elevated
tryptase less than 20
histamine x1 sky high, other times normal
upper enoscopy=gastritis (H. Pylori neg)
colonoscopy- no active crohn's but one small ulcer at anastamosis site
ct abd during spell- swelling and narrowing at anastamosis site and free pelvic fld
octreotide scan neg
mri brain neg except sinusitis
anti IGE receptor and serum IGE= high
vit D 25 hydroxy 32 with 30 being low end of norm
complement ch50 = high
c4 complement=normal

Have been to the ER for anaphylaxis between 5-10 times since April and have not gone to ER unless epi pen and (extra med care package of 50 Benadryl, 50 prednisone, clarinex, albuterol inhaler)
was hospitalized due GI prep prior to colonoscopy--threw me into anaphylaxis due to abd cramping
hospitalized for a week and during that week had 4 anaphylactic episodes (one on admit during intense abd pain (partial bowel obstruction from swelling) x2 from bowel prep for octreotide scan, and x1 from Xolair injection.

From there I was sent to Cleveland Clinic where I saw allergy/immunology and endocrine....more lab tests and clonipine supression test....alll coming up normal testing for all kinds of autoimmune disorders ect.  
had an anaphylactic episode on way home from cleveland and ended up in ER again...this was end of October.  I went on histamine depleted diet for 3 weeks and just did a 24 hour urine histamine and serum histamine..awaiting results and then had yet another reaction last week.  They wqnt me to see a GI doctor at Cleveland but can't get in until Jan.

Meanwhile I found this site and today my wife called and made me an appt with dr. Cem Akin for Jan.  We are gonna make the 14+ hour trip to see him to hopefully get answers.

Meds I'm on:
Prednisone since April now 30mg qd
Gastrocrom qid
zyflo 600mg po bid
singulair 10mg qd
zyrtec 10mg qd
advair inhaler 2 puffs qd
albuterol tabs 4mg qd
loratidine 10mg qd
ranitidine 300mg qd
phenergan 50mg qhs
omeprazole qd
probiodic qd

for flares: 50 benedryl, clarinex x1, 50mg prednisone, albuterol inhaler prn, epi pen

IV flds, pepcid, benedryl in ER generally helps

Allergic to iv contrast dye, ibuprofen, aspirin, and xolair


Anyone have any ideas or help for me?

I'd like to find out if there are any tests I should have done prior to Jan for my appt with dr. Akin

Sorry so long....I think I even left a lot out...I rarely get hives anymore and it goes straight to anaphylaxis....really scary for me wife and 5 young kids.

Sorry,  qd means daily on my meds and qid on the cromolyn is 4x/day.  Did I mention that my wife is a nurse and her lingo rubs off on me.

The sinus infection on my mri brain was quite a while ago and is cleared up.  I don't have any infections right now that I know of.  Even on the low histamine diet I felt the episodes coming on but they never became full fledged anaphylaxis.  3-4 times a week I still get bad abd cramping that leads to  the burning hot ears and starts going throughout my body....but then it stops there.  Other times it progresses and I never know why sometimes it doesn't progress unless on those times I make it to the bathroom fast enough and have less severe cramping.  I have always had to go to the bathroom right after eating due to my "short gut syndrome" and lack of gallbladder so this is why it took so long for me to connect the two.

The antihistamines that I'm on make me very tired.  I take them at night so I can function during the day.  I've never thought to take more unless I feel a flare coming on.  I'll ask the doc if I should increase them.  I'd really love to get off of the steroids....hate hate hate steroids.

I do find that when I get a cold I fell extremely fatigued and exhausted.  I've had bouts where my wife basically had to half carry me into the house, take off my work clothes and help me to bed.  Then I'd sleep for a day or two.  This has happened in the past before all of the hives and anaphylaxis so I wonder if it is related.

Thanks for the input and I'd love to hear more.

Forgot to mention that the ckit mutation thing was negative for me.

My cleveland doc just sent me a lab order to test IgE to beef, pork, lamb, and some galactose-alpha1, 3-galactose IgE  (don't know what this is all about, but I did test negative earlier this year)

Good thought about the salicylates, Lisa!  I think I might also try that.

As for testing, most doctors seem to want to do their own tests based on what they find in the initial consult, but you can call Dr. Akin's office to ask them.