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I was initially inspired to write this post because of my recent cravings for things like warm sourdough bread and fluffy blueberry muffins that I will never be able to eat again…sad, isn’t it?! And then I had a very interesting Monday medically…

Missing Food

One of the first symptoms I had with the auto-immune disease was severe food allergies.  I had to literally cut out everything but lettuce and chicken for a few weeks back in 2006 to start this elimination diet.  Basically, that means I eat nothing for a few weeks and start adding back one food at a time to track my reaction to it.  And unfortunately, my reactions were not good to most things I was consuming.

I had to cut out wheat, barley, oats and rye (what most people call the “gluten-free” diet), lactose (no dairy products essentially), in addition to fructose – now let me explain to you the extent of a “fructose-free” diet…it is absolutely miserable.  I had to cut out all fruits and most veggies that contained higher fructose levels than glucose levels.  My most severe reaction was corn – which, by the way, is in everything in America (check out the list I found of things that are secretly derived from corn).  High-fructose corn syrup rules this nation, let alone all of the secret words they use for what actually is derived from corn (ascorbic acid, aspartame, cellulose, maltodextrin, MSG, sorbitol…they even cover Saran Wrap in corn oil to prevent sticking, and are now starting to make sustainable utensils and to-go boxes out of corn…ugh).  What I was left with after this elimination “life-change” was an easier list to remember – any green vegetable, chicken, beef and fish and rice. That’s it.

After 5 years of this gluten-free, lactose-free, corn-free and fructose-free diet, you can imagine I was missing (or should I say craving) things like pasta, being from an extremely Italian family, ice-cream for my sweet tooth, and most importantly fruit. In order to get the vitamins and minerals that most of us get from the food we eat, I had to take vitamin and protein powders and several daily vitamins to make up for this lack of diet.

After the intense “gut-healing” and “vitamin-intense” regiments I did over the past 5 years to try to change these food allergies, I just recently have been able to add back the fruits and veggies that I’ve been missing! My meals finally have flavor and color to them.  And I’ve even been able to sneak in some cheeses and gelato once in awhile too, which makes me extremely happy.  Cooking is fun again and I’m trying a bunch of new recipes (now they only have to be gluten-free and corn-free).

Speaking of gluten, I still miss bread, pasta, cake, biscotti, croissants, cookies, pizza…can you tell I’m craving these right now?! It has been very difficult to come to terms with the fact that I am extremely allergic to gluten – and not only gluten (which is the binding agent in wheat, barley and rye) but specifically the grains themselves.  This literally means gluten-free people can drink vodka and have ketchup that has vinegar in it…but not me! I have to avoid everything that has a base of grain, including grain vinegar and grain alcohol (yes, that means shots people).  We are still testing out the idea that my sensitivity to these grains could be Celiac Disease, but the biopsy to diagnose this condition is invasive and unnecessary when my symptoms really tell the story.  But as I try to accept this dietary restriction in my life, I am lucky to be living in the generation of gluten-free because I at least have choices at the grocery store and recipes I can find online!

My Manic Monday

I worked from home yesterday because I planned on completing a couple of self-administered medical tests.  Little did I know how much “fun” that would be.

At the last rheumatologist appointment I had in Sacramento, my doctor convinced me that doing Genetic Testing would allow us to find out some of the DNA mutations we may be battling with and to help him figure out how to put my RA in remission.  Some vitamin regiments we have been trying in the past year have done nothing to improve some of my blood levels, so we are at a stand still until we figure out what mutations are stopping these things from working.  So, I finally coughed up the $500 and purchased the test kit last week.

Little did I know when I was opening the kit yesterday that I would have to prick my fingers numerous times to draw enough blood in order to cover an entire business-size card!  It was nauseating, I will admit.  And I’m used to needles, but this was awful – massaging my fingers in order to drip enough blood – gross!  Plus, it didn’t help that I was alone when I almost passed out…

Some doctors are hesitant to use Genetic Testing to help diagnose their patients, but my doctor believes that there are mutations that could be stopping me from absorbing key vitamins and minerals to get me on the road to remission.  For instance, I could have a mutation in the Vitamin D receptors in my cells, which could be the reason that my Vitamin D levels were almost non-existent a year ago and have barely improved while I’ve been taking 5 times the daily supplemental dose for the past 15 months.  So I said, what the heck, it can’t hurt to know what mutations my parents gave me, so I know whom to blame! (Just kidding, Mom and Dad!)

The other test was a test I’ve done twice before, which we will compare levels from the previous tests to see if things have improved.  Basically, I have to take 20 capsules of DMSA (a chelating agent) all at once, wait 6 hours without food, and then pee in a cup (this is medical people – get over it).  This test shows the various levels of heavy metals in my body by stirring up these heavy metals with the chelating agent before taking the sample.  The last time I took this test, the levels were higher than the first time I took it!  This happens sometimes when the patient starts taking chelating agents over a period of time and is not flushing out what was stirred up – this is why I was taking charcoal with the chelation.  But of course, things are always difficult with my body.

Speaking of difficult – did I mention that I’m extremely allergic to the chelating agent they use for this test?  The past two tests I did just made me a little dizzy, but this morning, my body decided to break out in little hives and give me a migraine (thanks a lot, doc).  I’ve been downing charcoal capsules today to help get rid of my reaction (since I can’t take Benedryl).

I’m sure you’re asking – How in the world did Lauren get high levels of mercury and lead in her blood? – Good question! We are still guessing as to why I absorbed all of the mercury and lead I’ve come into contact with over my lifetime, instead of flushing these out of my body like most people.  One thing it could be is that when I was 4 years old, I had very soft teeth (another genetic gift), so my dentist had to drill some of my molars down and replace them with caps and fillings.  The fillings used to be made from a combination of mercury and lead back in the day, so I definitely absorbed all of this mercury as a child.  But the fact that my body didn’t expel the heavy metals over my lifetime is the mystery – it could also be a genetic mutation, according to my doctor, so we’ll see what the tests say next month.

So my manic Monday of medical testing ended with the FedEx guy picking up my two packages and I finished out the day with some work, cooking and watching The Event (I’m addicted to this show now).  And this morning when I woke up, the rash started…I swear, it’s always something…