So Here's What I Know...

Last month at my new rheumatologist's office, I mentioned to her that I had started a Paleo journey (gluten free, dairy free, processed food free, legume free).  

She asked if I'd ever been tested for Celiac disease (gluten intolerance).  I said no.  She then went on to say that she thought my Paleo journey was a good experiment and she definitely supported it.

And then gave me two possible outcomes:

1.  If I am intolerant to gluten, then going gluten free will most certainly improve my lupus symptoms but it's not likely that it will put me into remission.

2.  If I am NOT intolerant to gluten, then I may not notice any thing more than less water retention and less joint pain.


So I was slightly deflated at these two possibilities, but said I'd like to be tested for Celiac disease.  I've read several articles lately where patients were first diagnosed with lupus, then later found out that it was actually Celiac disease causing lupus like symptoms.  And once they removed gluten from their diet for at least 6 months, their lupus symptoms went away and they were no longer considered lupus patients.

This made me incredibly optimistic that I could put my lupus to rest by simply eliminating gluten, even if my doctor didn't really believe it could happen.

Today I saw my rheumatologist again, with the results.

The blood test says that if your results come back < 6 you are not intolerant to gluten.  6 or above then you are.  And it's not necessarily all or nothing, there are varying degrees to your level of intolerance, the higher the number, the more gluten harms your body.

My number is 6.

What does this mean?

I'm borderline intolerant.  AND that gluten is not the cause of my lupus.  I straight up HAVE lupus. Which means that simply eliminating gluten will NOT put me in remission.  I will forever have to rely on pharmaceutical drugs to control my lupus.

So where do I go from here with my Paleo journey???

Rheumatologist is having me get a biopsy done to get a more accurate reading on how intolerant of gluten I am.  She thinks that I'm just barely effected by it and therefore says that if I FEEL better without gluten in my diet, then continue on.  If I don't really notice a difference or improvement, then it's really not a big deal and I can go back to having gluten in my diet.

I'm guessing since my number was a 6, that I don't have Celiac's disease... which is actually great.  I can have a cookie if I want.  :)  But I DO feel better having eliminated grains from my diet and so I am going to continue on being gluten free.  And I will see this Paleo diet through till the end of my 6 month trial, just to see if I can heal any problems in my gut.

Along with the articles relating gluten and lupus, I've been reading a LOT about a condition called, "leaky gut".  And though I have not been tested for that, I'm guessing there are definitely some problems in my stomach as well.  Having eaten the standard American diet my entire life and then being on harsh drugs the past 7 years, I have no doubt I also have a leaky gut.

So first, I must heal my gut through Paleo, then I will just continue being gluten free after that.

I love love LOVE that this doctor takes the time to explain the science behind her answers, just like Dr. Ahmed.

Oh how I miss this guy!

So here's what I know:

I for sure, without a doubt, HAVE lupus, and not gluten induced lupus.  And let me clarify that I never doubted that I HAD lupus.  I was just hoping to know WHY or HOW I got it, in order to know HOW to get rid of it and if getting rid of it was even a possibility.  Because hearing "there is no cure" just isn't cutting it anymore.

My journey on this Road 2 Remission continues.  And hopefully it will lead to a cure... at least for MY particular case.  Because the more I learn, the more it becomes clear that lupus is so specific to the individual.  Therefore, the cure must be too.

But I WILL go into remission, some day, some how.  

I MUST.

What other choice do I have?