Friday, September 6, 2013

The Mourning Phase

When I went to my doctor to get my test results, he sat me down and this is how it started off:

"First, I have to tell you how very sorry I am to have to deliver this news..."

You'd think I was about to be told I have days to live, and I thought "Oh come on. I can live without gluten, don't be so dramatic!"  

Then he pulled out 4 pages of big thick black lines.  

And my jaw dropped.  And he started ticking off all of the things I could no longer eat.  Eggs, cheese, yogurt, milk/any dairy, beef, wheat, gluten, rye, barley because it has gluten, peanuts, almonds, red grapes, avocados, navy beans, kidney beans, some squash, ginger, turmeric and he paused with this one...GARLIC! 

He went on to explain that some of the foods in the moderate category I could reintroduce later, but the stuff in the red I would never tolerate again.  Never again to have eggs cheese or garlic.  No more beef.  Ever.

So then the negotiations come in to play: but I have a bunch of avocados, can I eat those then get rid of them? So I decided I would try to finish off the food in my house before starting on this allergy thing.  He gave me his blessing to do that but urged me to start soon.  Then he paused and told me to prepare for the mourning phase.  


I mean I understood mourning as I recently lost my mom and was feeling it with that.  But for food?  Yes, he said, for food.  He then told me it is common to feel depressed and that I will be in mourning for the food I ate.  I didn't really believe him.  

Then I got home.

I went through my cupboards and fridge.  I obviously had some shopping to do and a lot of food to give away.  Bread was the least of it.  I had a huge beef tenderloin in the freezer, cans of soups, pickles, ketchup, mustard, mayo, all my gluten filled things I was ready for.  The egg garlic and dairy I wasn't!   I sat down and realized I couldn't eat everything first because all this food would last for months.  So I decided that the next day I would clean out my cupboards and fridge.  

The next day I got my heavy duty shopping bags out and I started loading.  Bag after bag after bag.  Goodbye my beloved soy sauce!  Goodbye garlic chili sauce.  Goodbye kosher pickles!  I called my ex and had him come pick it up.  Then I looked around and I had hardly anything in my cupboards left. Tuna.  Chicken. Beans.    I was starting to feel it.  I was starting to feel lost.

So I decided to go shopping and get new food.  I went to the gluten free section. Garlic, garlic, garlic.  Navy beans, beef, milk, butter, eggs, cheese....there was NOTHING I could eat.   I stood in the aisle and literally threw my hands up and felt like I was going to start crying.  A tear escaped and my face was hot.  I had to get out of there.

I had no idea how I was going to be able to pull this off.  I then realized that everything I ate was going to have to be homemade.  Now consider that I was still so very exhausted from having such a toxic system, I could not imagine being able to do this. 

So yes, I was in mourning.  Very much so.  Life just got a whole lot harder.  I needed a plan.  I needed something to help me out.  I decided to be thankful that I've always been a curious and experimental cook, then I started going through books and recipes to get ideas.  Then I did the one thing that helped me the most.  I made a list!  Not a list of what I couldn't have but a list of the things I could have.  That included things from individual foods to full on dishes of things I could make. Then when I got stuck, I could look at that list for help.

At first I made a lot of chili and gluten free spaghetti. I also ate a lot of chicken salad.  It gets old after awhile but that would then inspire me to try something new.  Over time I found that I was feeling better.  I initially couldn't find a bread without eggs, so one day after work I decided to make my own.  I went to the store and bought my supplies and when I got home I decided to make it.  Then it hit me.  I HAD ENERGY!  I actually felt like I could do this, at last!  

9 months later I have found a lot of go to foods, but yes, it is still hard sometimes.  There are days I contemplate grabbing a burger and just suffering the consequences, but then I remember how crappy I feel after a slight bit of hidden allergen, and I think again.

One thing I now know for sure.  My mom wasn't just allergic to gluten.  She had a lot more that she was allergic to that she was never tested for.  And that is partly why I'm writing this.  So that if someone stumbles upon this, maybe they will realize they need to look at more than just gluten.  That's generally just the tip of the iceberg.

Wednesday, September 4, 2013

Why I'm Here, aka My Crappy Genes

At this point, I'm rather surprised I'm not allergic to water.  Allergic? Yes, but thankfully (so far) none of my food allergies causes an anaphylactic reaction. So am I really allergic? Doesn't that just mean I'm just "sensitive?"  No, and I think after reading on you'll discover why.

My journey seemed to start after my mom's death almost a year ago.  She was only 74. Now I know that it may not seem young to some folks, but this was a woman who spent most of her later years as a "healthy" vegetarian who had no vices.  She never drank or smoked.  But she did battle these annoying things like fibromyalgia, arthritis that they kept saying was, then wasn't, then was rheumatoid arthritis, and diarrhea.  Lots and lots of pooping.  We call it "the Hershey Squirts."  (And yes, now you know how gentle and delicate a soul I am.)

Mom took a lot of crap from us (pun only partially intended) over her chronic, and we thought perhaps a bit neurotic, need for being close to a bathroom.  She even bought a big old Chevy van because she kept a port a potty in the back.  Yup.  That bad.

That was the way it was from I'm guessing sometime in the 1980's, but it could have been before that. All I remember was that it just seemed to get worse.  She went to doctor after doctor.  It's rheumatoid arthritis.  No wait, scratch that, is lupus.  No wait! It's fibromyalgia.  Or maybe it's nerves!  I couldn't keep up with the diagnosis du jour.

She just couldn't catch a break.  She got remarried in the late 90's and started square dancing.  Until she couldn't do that anymore.  Now comes the neuropathy and the leg braces, cane and walker.  And finally. FINALLY.  A diagnosis.

Celiac disease.  Aka the Hershey Squirt disease.

So now, in her mid to late 60's she finds out she is severely allergic to gluten.  Oh, and by the way, all that healthy vegetarian food she ate, things like GLUTEN PATTIES? Yeah, that just sped it all right along.

Little did anyone know...even the doctors, that pooping wasn't really the problem.  All those years of being allergic to gluten did some serious internal damage.  The more I learn, I have no doubt that is what contributed in large part to not just the neuropathy, fibromyalgia and arthritis, but also to the heart attack she suffered in 2007 at the age of 68.  Damaged heart valve.

So she had a new valve put in, then that night gets rushed in for a second surgery due to internal bleeding.  Have you ever heard about patients who undergo surgery that aren't fully "out"? Yep.  Her too.  She felt and heard everything for that second surgery.  The doctor didn't believe her until she told him what he said during that time.

It was during that hospital stay where I realized how bad her celiac disease was, and it also was when I realized that no one knew what it was.  We would order no gluten meals for her to find they put a dinner roll on her plate.  It was incessant.  We couldn't keep the gluten away from her.  We had to take over and bring in food for her so she wouldn't continue to be poisoned as she was after eating yogurt with hidden gluten.

So that was what gluten did to my mom.   5 years later she died.  From a $%&*! cold.

Now sometime after my mom found out about her celiac, I thought I should get tested because I inherited some insanely craptacular genes.  I too had irritable bowel, but also wondered about this rash I've never been able to get rid of since the mid 90's.  I took the blood test and it was negative.  I opted not to get the biopsy.

But after she died, I realized there was probably a time in her life where she didn't have celiac, but the gluten was getting her there.  So I found a doctor, a naturopath, who specialized in food allergies.  He tested me for nearly 200 foods.  And then he dropped the mother of all bombs.

I am allergic to: All dairy of any shape or form, beef, peanuts, almonds, avocado, red grapes, sunflower seeds, kidney beans, navy/white beans, zucchini, brewers yeast, eggs, garlic, black olives, chili powder, turmeric, alfalfa, summer squash, and oh yeah, gluten/wheat and all that comes with it (spelt, triticale, and rye).  Oddly enough, I'm not allergic to barley, yet it has gluten so I've been told not to eat it.

Out of all of that, one would think I'd be most allergic to wheat, but actually I'm off the charts most allergic to eggs and garlic.

I was mostly being tested out of precaution and because I knew I suffered the Hershey Squirts like my mom, plus that whole rash thing.  Oh - and that rash on my back?  Yeah, that took over 15 years to get a diagnosis of eczema, as well.

What I came to find out was that the exhaustion I had been feeling wasn't just me being lazy.  The headaches  and congestion I had been having which caused me to set up a pharmaceutical line up on my console at work, not really hayfever.  I finally got a diagnosis as well.  Chronic fatigue and Leaky Gut Syndrome.  

That is just the beginning.  I have had a ton of minor but annoying problems over the years that have sent me to the doctor for answers that I never got.  And looking back with the knowledge I have now, I realize I was always allergic to garlic and probably eggs as well.  But because I don't have an anaphylactic reaction to any of these things, it was never caught.  It was a rash.  It was itchy hives.  It was hayfever.  It was laziness.  It was all in my head.  

As they say, hindsight is 20/20.  And now that I have some answers it is like all the pieces of the puzzle are starting to fall in place.  

On a closing note, I will say that I was the world's biggest skeptic about going to a naturopath prior to all of this.  Eat this herb, drink this nasty oil....not for me.  I'll take something in a pretty package that goes down easy, thankyouverymuch.  I'm still not wearing Birkenstock's or wearing hemp, but I will say that my views have been incredibly altered over the course of the last 9 months.  You will hear me rant about GMO's and processed foods in the future.  This coming from the former customer of the month at McDonald's.

And you will frequently hear me being grateful that coffee is, indeed, gluten free.