Monday, July 15, 2013

Frustrated and I don't get it

I am a smart gal, but I don't get it.  I went in last Tuesday for my allergy appointment.  The doctor did skin prick testing for milk, soy, and banana.  Boy, was I nervous.  My blood pressure was 155/72 ... it's normally 107/68. 

The nurse came in, marked my arm, pricked it with the control solutions and the test allergens, and I waited.  The histamine control reacted quite spectacularly, the other three were duds.  Now, I am not surprised at the banana.  That was weird from the outset, and I expected the symptoms to be correlated not causative.  The other two, though, I just don't get.

How in the world can I have an intolerance to milk and soy given the immediacy and type of reaction.  Forget about the duration of my milk symptoms.  Part of those were probably due to the Adderall, and I expect that I am also lactose intolerant.  I am a human adult after all.  The soy reaction isn't a big deal, but the milk reaction scares me silly.  The doc said that it is intolerance, no need to worry, and I can challenge at home if I want. Ok, .... I can't say that I like that answer.

Soy
Now soy isn't a big deal.  I've logged coughing and itching.  Saturday, given the doc's comments, I put a tablespoon or so of mayonnaise into my chicken salad.  I love mayo and don't really cotton to mustard, so I said, "Yippee!" and went for it.  I am not allergic, right?  Maybe 10 minutes into my meal (I have the actual duration somewhere, but I don't want to look for it), I start hacking up a lung.  Cough, cough, cough ... deep in my chest.  This lasted for, I don't really know, thirty or forty minutes before I finally stopped.  Now this is relatively mild, but it is also immediate.  Food intolerance is supposed to be delayed.  It's also supposed to be mostly gastrointestinal in nature.  So what gives?  I don't get it.

Milk
Now, my milk reaction has historically been much, much worse.  Hence, I use the term scary.  I am not going to test that until I have my significant other home to help monitor and reaction.  Doc said not to worry, so he isn't.  He didn't feel his throat closing up on him nor the feeling like he was going to pass out the last time I ate dairy. See, I worry.

What to do?
Well, I am still going to avoid, avoid, avoid.  I don't quite believe the doctor's assurances.  I am the one with the reaction, he isn't.  Besides, the negative predictive value for a milk skin prick test is 94.8% according to one study; worse, according to others.  That still leaves a 5% chance of an IgE-mediated allergy, and my symptoms are anaphylactic.  Double blind placebo controlled challenges are the gold standard for a reason.  I am not risk-taking girl.  Maybe when my boys are out of college.

I think that I will do a soy challenge this week or next.  I put together a time table and work my way through 1T, 1/8 cup, 1/4 cup, 1/2 cup, 1 cup of soy milk trials.  I'll record the time of ingestion and any symptoms, including how long they last.  I'll take the next dose, after I've had 30 minutes or more of recovery time.  I'm thinking that I'll make a video of the symptoms with a time stamp also.  Maybe I didn't describe what was happening well enough.

That will be my test-case.  After I feel recovered, I'll go through the same procedure with milk.  If all is well, I won't have mucus running in a stream out of my nose, wheezing and coughing so hard that I can't catch a breath, a throat that will cooperate with swallowing and talking, and the ability to stay awake long enough to take the video.  If not, well then, maybe that doctor will be able to explain my reaction to me in a way that I better understand, because if this reaction isn't an allergic one, I'd sure as hell like to understand "intolerance" better. 

Still, the right answer is to avoid it.  Unfortunately, I can't always, and I still don't know what to do when I get accidentally exposed.  His saying not to worry, doesn't help the matter in the slightest.

Friday, June 21, 2013

Tentative OK on the eggs

Made myself two poached eggs for lunch today to no ill effect.  Hopefully, that means eggs are safe.  Next, I will try rice in isolation.

Milk, Soy, Bananas (?), Rice (?), Eggs (?) ... oh my!

Things have been challenging of late.  Ever since I returned from my trip to Rome.  It seemed to take forever to get over the Rome-Subway fiasco.  (We think maybe the sausage had parmesan cheese in it.  That would be much better than a cross-contamination reaction from not changing gloves.)  The pain in my gut lasted forever.  I think all told, it lasted 17, maybe 18, days.  That is actually within normal, but it seems like forever when you are in it.

The thing I couldn't understand was that even after the Great Acne Breakout I was getting itchy.  Now, the milk had never really made anything other than my face itchy before, but this was everywhere ... and weeks after the initial exposure.  It just didn't make any sense.

THEN, I went to tae kwon do class and broke out into smallish hives on my legs, arms, and chest and had some trouble breathing.  Truly, I wished that I had my inhaler.  When I got home, I used my inhaler and had all sorts of trouble all week and skipped tae kwon do on Friday. 

The next Tuesday, I went to class, and it happened again except WORSE.  I fell out of line (didn't even ask permission, just went) went I started having trouble swallowing.  Grabbed my inhaler:  once, twice, thrice, four times I took a puff.  I grabbed some Benadryl and tried to swallow it.  Thankfully, after the third, maybe fourth try, I was able to swallow it.  That last time was the last time I was going to attempt before calling 911.  I cannot even describe how I felt or even how I feel about it.  Shocked or maybe dismayed.  

In thinking about it all, the common element was soy.  Both times before class, I had myself a bowl of raisin bran with soy milk.  Since then, I've restarted my food diary, and sure enough, soy causes all sorts of itching and rashes and a dripping nose and nausea and exhaustion and so forth.  This, I think I am angry and annoyed by.

The food diary is also showing possible reactions to bananas, eggs, and rice.  These aren't so clear cut, and I will need to do better at tracking and isolation.  I can't even be angry by this.  It's enough to drop me into a pool of despair.  I feel like my body is attacking itself.  Worse, I am so very tired.  I don't really know what to do and am pretty convinced that there isn't much the medical establishment can do to help.

The internet is a bust.  Histamine Intolerance:  avoid all histamine foods especially fermented ones.  Leaky Gut Syndrome:  repair the gut by eating naturally fermented foods.  You Can Develop an Allergy at Any Time:  we've no idea why or what to do about it. 

I am a relatively health forty-two year old woman.  My heart is good; my blood pressure and pulse are good; my iPhone app says I have a low resting heart rate.  I am not a work out machine, but I am relatively active when I don't feel like a pile of poo.  My weight is well within the desirable range.  Until this recent craziness, my migraines were gone with the elimination of dairy and so was my acne.  Lungs show clear; no asthma.  While I think I've had this dairy allergy for a long time, at least since I started college, I never knew of any allergies.  What the hell is going on?!  What do I need to do to get and feel better.  Not that I am hungry, but I begin to dread meals.  What can I possibly eat?  What is going to make me sick this time?

I'll be seeing the allergist on the 11th.  Maybe something good will come of that. 

Friday, June 7, 2013

Foggy-brained and lack of direction

This past two weeks since my Rome-Subway exposure have been quite difficult.  For such a slight exposure, it has been troubling how long it is taking me to recover.  Last Tuesday, a few days after I had my cross-contaminated sandwich, I had difficulty breathing during my tae kwon do class and needed to resort to my inhaler that I thought I could put aside and had the nurse take off of my current medications list.  Coughing and like were problems before class, but it was even worse after.  Even today as I sit and write this, there is some pressure and squeezing in my chest.  Of all the symptoms I've struggled with these past two weeks, I really cannot say which have been the worst:

  • The lump in my throat
  • The tightness in my chest
  • The muddle-headed fuzzy-brained lethargy
  • The sharp pain in my bowels
  • The intermittent itching on my scalp, face, and stomach

Each one of these symptoms bothered me to no end off-and-on.  Even now I can't pick.  At least the bowel pain has finally gone as has the lump in my throat.  The rest come and go.  I am really ready for this to be over.  The cycle lasts 10-17 days, and I am at day 14.  It has got to be over soon.

Also feeling a distinct lack of direction.  Life has taken another left-turn.  It seems as though that is the new normal.  No sooner do I start feeling settled and in a groove, then things change again.  It makes it hard to pick a direction.  It's bad enough that the ADHD makes it difficult to stay interested in engaged in anything that isn't immediately rewarding.  It's even worse that I've been so darn sick the last forever that I have had no energy or real motivation for anything.  These continuing, unexpected, difficult to deal with changes, make it no easier.  It certainly makes it hard to decide.

Hoping to feel better soon, so I can get excited about something.

Friday, May 31, 2013

The land of mozzarella

Went to Rome last week.  Had a lovely time, even though it rained most days.  But really, is being in Rome ever a bad thing?

We went to the same restaurant every night.  Not only was the food good, but also they took such good care of me.  I had prepared an allergy card in Italian prior to the trip.  I handed it to my server, who took it to the kitchen and came back with acceptable choices.  On the last day, our waiter had the chef prepare something special for me.  It wonderful.

The only difficulties came from American restaurants:
  1. We went to TGI Friday's for lunch at the Atlanta Airport.  When you look at their allergy menu, they essentially advise the milk-allergic to eat NOTHING they serve.  Primarily because their food preparation practices put the allergic at risk of cross-contamination.  Sure enough, I got hit by the butter or margarine they use on the grill.  It wasn't too bad and more or less passed quickly.  Still, it is so frustrating.

  2. On our last day, we went to Subway for lunch:  quick and easy, generally safe with lots of choices for me.  Unfortunately, the food handler prepared my sandwich with the same gloves he made my husband's sandwich with and after grabbing a large handful of shredded cheese.  I should have known better, but I don't think that I have quite completely accepted the extent and degree of my allergy.  I really didn't think it would be a problem.  Boy, have I been paying for that miscalculation since.  My symptoms still haven't completely run their course six days later.  It seems that the pain in my gut lasts longer and is worse with every exposure.  When will I learn?
Appointment with the allergist in July.  I hope to remain dairy free until then.  With a little luck and competence, he'll be able to tell me when to worry and how to treat any incidental exposures.  After all, there almost certainly will be incidental exposures.  With my work, I have to eat out, and I haven't yet learned how to ensure my food is safe for me to eat.

Thursday, April 25, 2013

Local ITEA chapter did well by me

Went to my first professional luncheon today since uncovering my dairy allergy.  I registered late and faced the prospect with some trepidation.  My local ITEA chapter did well by me though, even so.  The local president spoke to the kitchen staff on my behalf, and they grilled me some chicken; and there was plenty of salad.  I got my fill, without too much difficulty, and I didn't get sick.  Even better, I was able to get out into the community again and see some folks that I hadn't spoken to in a while.  Karen Jackson was the speaker.  It is always good to hear what is happening in the commonwealth, and it was good to briefly chat with her again. All in all, a good day.