Where We're At Right Now and Food Sensitivity Testing || ALCAT & CYREX

Over the last couple of weeks I have made some comments regarding my current food restrictions and super serious diet situation.

Because these new rules do effect the happenings on this here blog, I figured I better lay it all out for you.
So here we go.

As you all should know by now, I was diagnosed with a disorder called Postural Orthostatic Tachycardia syndrome back at the end of 2011. It started with a cold, that never quite went away and a nagging lightheadedness every time I stood up or made a sudden movement. Eventually, I started passing out anytime I had to stand still or moved to quickly. I ended up in the ER a couple of times, first them shrugging me off as dehydrated or anemic, then when all my blood work came back normal they were baffled. By chance, a resident in the hospital had heard of a disorder that had such symptoms, and I was diagnosed, monitored and sent on my way with a handful of new prescriptions. It took a lot of time, and experimentation to find the right dosages and medications to control my symptoms, but eventually I was able to get to a level high enough to at least function.
Flash forward a couple of years to another cold, which resulted in pneumonia and another wasted trip to the ER. The pneumonia was treated, but my POTS symptoms came back threefold. The medications that had been keeping it in remission were no longer proving effective. After struggling through more experimental medications (there are only a handful of medications proven to help treat the symptoms of POTS, all of which I have tried) I headed to an autonomic expert at Stanford, where they did more tests to confirm the diagnosis, and test the rest of my autonomic function. It was determined that while I definitely had POTS, my nervous system was all around dysfunctioning. It no longer knew the difference between rest or activity, and therefore I was just in that state of fight or flight 24/7. They added more medications and sent me on my way.
There was nothing else to really do if those medications didn't work out, I'd run out of options.
That is when I decided it was time to really put all my focus into healing. Living in a constant state of adrenaline and panic was taking too much of a toll on my mental and physical health.
So I left my full time job, reduced as much stress in my life as possible and started working my tail off. For the last several months, I have been gradually increasing my physical stamina and taking a very disciplined stock of what goes into my body.
After about 3 months of doing this, I felt the same. My exercising ability had just slightly increased, but I would still get lightheaded and nauseous walking down the street or going into a grocery store. Even though I barely took any calories in every day, I gained almost twenty pounds in that couple of months. My insomnia was worse then ever, and I still was spending every day drenched with fatigue.

That's when it became time to turn to alternative methods. I wouldn't say I am incredibly pro any types of medicine, whether it be holistic or traditional, but rather I believe that there is a time an a place for both directions. Traditional medicine was not giving me the help I needed. Even when things seemed okay before, any progress I had made came crashing down every time I picked up a virus...which is frequently due to my Celiac compromised immune system.

I started seeing a doctor that specializes in nutrition and natural healing, took a boat load of expensive  tests, and purchased a million different supplements.

So that's where we are at now.

I have been really lucky to have a really great medical team, from my very open minded primary care physician to the cardiologist who was willing to take me on without really knowing what he was getting into and to the great doctor at Stanford he referred me to when he acknowledged he couldn't help me anymore. All of these people have done their best, and taken a lot of time and effort to help me and I appreciate that a lot.

But back to this new doctor.
He ordered a couple panels of food sensitive testing, which was the reason I ended up seeing him in the first place, as well as some genetic testing and other random blood tests.

From the blood work, it was determined that my body doesn't absorb vitamins (which we already knew) and that I have low oxygen perfusion and high sulfate levels. I have always had high cortisol levels (which is a stress hormone) so he put me on a supplement to help reduce those, as well as some supplements that reduce sulfates and help the body absorb vitamins.
The genetic testing basically just showed that I had a lot of things working against me, primarily in the immunity and thyroid departments. I don't really understand yet what all that genetic mumbo jumbo is all about, but it all seemed to make sense to him so that's what really matters I guess...

The food sensitivities where tested on two different panels, the ALCAT panel and the CYREX.
And those are what this whole post was supposed to be about, until I got majorly sidetracked with my life story. Sorry about that.

The CYREX tests the IGE response which is what one would call an allergy, and it showed up with only a handful of issues. The only severe item was cranberries, and on the mild side where blueberries, pineapple, gelatin, beta-glucan and locust bean gum.

So those are all outta my life.
That there locust bean gum doesn't seem life much, but if you take a look at any dairy free product, whoop there it is.

The ALCAT however, showed a whole lotta stuff.
Things that I don't want to be removed from my life, because I love them so.

The panel divides all the things it tests into a four category color chart.
Green foods are okay, yellow are a slight sensitivity, orange is mild, and red severe.

Lets start with the red, because they are the most depressing. These foods need to be avoided all together for at least six months, then reintroduced sparingly.
These foods are: lobster, bakers yeast. sweet potatoes, garlic and millet.
I cried inside when I saw garlic on that list, so long my best friend.

The orange column is supposed to be avoided for three or four months I believe, and its includes: cane sugar, coffee, halibut and psyllium.
Nothing too sad, I don't drink coffee and sugar is easy enough to replace so I can survive without these.

Next, the yellow list. To be avoided for at least thirty days before reintroduction.
Apricot, asparagus, basil, beef, bell peppers, black pepper, blackberry, tea, broccoli, cashew, cherry, chickpea, clam, ginger, green pea, hops, mango, onion, oyster, raspberry, sesame, soybean, string bean, sunflower, and vanilla.

A lot of things I love on that list.
So, so sad.

And ya know, sensitive to gluten and casein/whey blah blah blah.

I am about a month into the food elimination and supplementaion now, still exercising and reducing my intake of meats. Even though I don't have sensitivities to any meats besides beef, I still notice an increase of sleep difficulty when I eat any sort of meat product.
When I got my results, I was told to expect a ten to fifteen pound water weight loss from the diet and to keep track of my daily sulfate levels to see if they were reducing at all. (with a little testing strip)

As of now, I have not lost a single pound, I still struggle to sleep and my sulfate levels have not reduced. So thats a bummer.
But, I do not spend the entire day in a foggy fatigued state, I can cook dinner without feeling lightheaded, and I walked through Ikea and downtown San Francisco for goodness sakes. I can go to the grocery store, walk up some stairs, and have even ventured out without those awful compression stockings that I have been wearing for the last three years.
All things that weren't true a month ago.
I don't know if it is the diet, the supplements or a combination of them both, but I can function again. There is still a long way to go and a lot more mystery in this here body of mine, but I don't feel like I am lost in the deep dark whole that I was in last summer.
There is a glimmer of hope there, I just have to keep working towards it.

Sorry my friends for another big medical jumbo rant, it was not where I was expecting to go with this post...it just happened that way.

The moral of the story, is that my recipes from here on out are going to be a little bit different. There are far fewer things that I can just go pick up at the store, and a lot less ingredients that I can include at home.

So I apologize in advance for the lack of garlic, basil or all around delicious things.
Most of the food items I have been able to eliminate without a problem, but I am struggling deeply with the garlic, onion and peppers.
I basically have to relearn how to cook. Those are literally the first items in my hands when I get in the kitchen. Not even kidding, you guys.

Now I'm going to end this rant of a post, go pick up my herb bible and do a little light reading.

Thank you for the ten minutes you donated to reading this story, I love you all!

Enjoy xoxo


  1. I have POTS too and it blows! I'm on a beta blocker and blood pressure meds for it. I never really thought about my diet affecting it (which is odd, considering it affects just about everything else I have). That's quite an array of foods you can't have :( a lot of your no gos are the things that I'm still able to eat, and vice versa. It's definitely tough not being able to have onions and garlic - they're in everything! Was the genetic test expensive? I'm trying to get referred over to a nutritionist/dietician/what have you, but so far none will take me since I'm too complicated of a case :/ I'm glad you're figuring it out at least! The rest will fall into place eventually. Till then, well that's what some good experimenting is for

    1. Hi Sara! I am a firm believer in the "you are what you eat" and the power of food in our health systems. That said, despite a healthy diet I still had trouble with m POTS and all of my other medical issues. The genetic testing was not very expensive, there are actually a number of websites online that you can do it without a doctors order. My nutritionist recommended 23andme to do the test then the raw genetic data was sent to another company for medical interpretation. It ended up costing my a little over a hundred dollars. The ALCAT and CYREX however, were each about $400. I have been through many doctors who start out optimistic about curing me, then reach a point were they just don't know what to do anymore. I completely understand your frustration with finding a doctor, POTS is not well enough known yet for medical professionals to all know how to fix! We'll all just keep trucking along while they figure it out, I guess ;)

  2. You are awesome...just sayin'! :)