15
Jun
10

So, what’s wrong with you again?


Ok, so I better explain this crazy thing.

I am still trying to figure it out myself.  There are three people that are really instrumental right now in helping me figure this all out.  First, my doctor is amazing.  Let’s call him Dr. Uke (He plays a mean ukulele).  I have been sick for the better part of 4-5 years.  The doctors along the years have thought many things but my last round of doctors where just not into me.  They didn’t want to deal with the fact that whatever I had was hard to diagnose.  I will share my symptoms in am minute, but the reason I love Dr. Uke is that when my joints started to freeze up and I knew I had to get new drs, I went to him, gave him the list of symptoms and within a day of him doing some research, he was able to come to a pretty strong pre-diagnosis of a sulfite allergy.  At first, I was like, what the HELL is that.  I only knew that it had something to do with my habitual and almost sexual love of chardonnay, so I knew that I was in trouble.  Dr. Uke is really amazing.  He is one of those rare doctors that actually cares about the patient and will put in as much time and concern as it takes to make you feel well-taken care of…I hope he wants me to use his real name on here so I can spread the word about what an amazing white coat he is.

But I did my own online research (always a bad thing) and it really did open my eyes. WOW.  I think I really did cry from relief.  So,  he has been and will still probably run a bunch of tests, but in the meantime, I am on a strict elimination diet, which is causing me to be pissed off pretty much 24/7.  He hooked me up with an awesome nutritionist that I will refer to as “NoYouCan’tEatThatEitherSorry”

Dr. Uke has a friend that suffers from this.  I will let her decide whether or not she wants me to out her.  For now, I will call her AWESOME.  She has helped he out a lot and I  have a feeling that this is the beginning of a beautiful, suflite-free relationship.

So, without further ado…here is what I have about this beast so far:

This allergy or intolerence, whatev’s,  is pretty complex.  I secretly happen to think that (1) a lot of people are out there feeling like crap and don’t know they have it because a lot of doctors don’t really know much about it and (2) More people are going to develop this intolerance because of all the processed food our society eats.

In 1985 the US FDA banned the use of bisufites on fresh fruits and vegetables after it had been linked to 250 cases of anaphylactic shock and a dozen deaths. However, it’s still allowed in packaged food, and wine is loaded with it.

Since I have cleaned my body in the last couple of weeks, my reactions are getting stronger and I am having to deal with changing my eating at a rapid pace.  I have put together a list of can NOTS but hopefully will have a positive thinking list of cans soon There is not a lot of info put there about this and because of various FDA regulations, most of these things are hidden in labels.  Basically, foods that come out of the ground and are fresh.  I can have most meats, but pork and shellfish I cannot  (I CAN have fresh lobster!)  I just can’t put any seasoning on anything, except fresh herbs and sea salt.  This is not something that I will grow out of or that I will get over.  I have to accept it, learn how to live with it.    But it will be a bit hard for me for a little bit and for the family while we all have to adjust.  My husband Thor and the kids, Alpha, Cracker and Bambi are being amazing.  And the good news is that I don’t have anything worse like lupus or another auto immune that I totally thought I had.  I will be so healthy, lose weight, lower my cholesterol and hopefully my asthma will go away.  So YAY!

no natural sulfites

like grapes (wine),

onions

garlic

mushrooms

beets

anything pickled, including olives

eggs

cheese

No dried herbs or seasonings, only fresh herbs

processed with preservatives

so many things in a restaurant

regular salt (can have sea salt)…

any with corn in the ingredients,

anything with sugar in the ingredients (except cane sugar),

pretty much most booze, except really really good tequila so get those sulfite free margarita recipes going!

maple syrup

MSG

caramel color

lunchmeat

coconut

pork

vinegar

soy

salmon

peanuts

all condiments – mustard, mayo, ketchup, relish, steak sauce, etc.

gum

label buzzwords:  There are six names used for sulfites: sulfur dioxide, sodium sulfite, sodium bisulfite, potassium bisulfite, sodium metabisulfite, and potassium metabisulfite. Sulfites, bisulfites and metabisulfites are all dry chemical forms of the gas, sulfur dioxide.

I hear some beers might be ok…these things vary for people. So do the reactions. The reaction I seem to have now is pretty harsh.  I do have bad asthma and a lot of other things that effect my heart, headaches, weakness, etc, But the most severe reaction now is tht it rapidly attacks my joints, mostly at least two random different ones at the same time. And it can last up to 2-3 days for them to clear up.  I ate a veggie sandwich at Portillo’s last week and after 2 hours, my right shoulder and left hand complety froze and I could barely drive my steering wheel to get me and the kids home,  So yeah, scary.

I just have to learn some quick, easy recipes that I can pre-make and carry my food around with me in a cooler. And like my new friend AWESOME who shares the same allergy told me, just learn how to work around feeling normal and a part of everything at restaurants and social situations.

The hardest thing for me is obviously the wine.  It really is depressing for me.  A good glass of wine at the end of the day (or three) was really the treat that I have myself.  And cheese.  And garlic.  Onions.  Some of these things I may be able to eat again.  I am going to remain optimistic.

My biggest symptoms:

asthma

severe joint pain

severe fatigue and weakness

high blood pressure

headaches

Renaud’s syndrome

So there you go!  I feel better already now that I am eating healthier and I hope I can inspire a few slugs like me to do the same.

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2 Responses to “So, what’s wrong with you again?”


  1. June 15, 2010 at 7:23 pm

    You can use my real name Heather, I have nothing to hide…yet…

    Dr Mike (i.e. Dr Uke)

  2. 2 Brian
    December 5, 2010 at 3:44 am

    Hello Heather,

    You will find that all you can do if you intentionally or inadvertently ingest something that is contaminated with sulphites. All is not lost, just take some anti-histamines. I have myself been to the hospital with anaphylactic reactions to a full tank of poison. I started to come up with the idea of reaction severity being controlled by amount ingested. I look at it as an oil tank for a house. When the tank is full the house gets oil for a long time, as the sulfite receeds from the system so does the reaction. After the 5th time I just started to mimic what the nursing staff gave to me. For a mild reaction I would take 10mg of Reactin, sometimes up to 4 times a day. For medium, a claritn twice a day and the reactin 4 times. For a bad dose, I would take Atarax. The Atarax has the effect of wiping me out and making me a bad person to be around for awhile. Because of a tireless Dr. in Ottawa Canada fighting with Health Canada bureaucrats sulfite is recognized by them for their top ten list. Good luck with finding out more, btw there is a group on yahoo groups called sulfitesnomore.

    Brian


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Heather Moran

Crazed sulfite-free woman.

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