Thursday, May 30, 2013

Still sick - but an impending diagnosis?

Hi gang.  Yesterday I was at my lowest ebb in weeks.  I'd had NO sleep the night before and had to be at the hospital at 8:00am for an ACHT (adrenal) stimulation test.  This is the test I tried to do a couple weeks earlier but had a panic attack and the procedure was postponed.

Thankfully, my friend took me yesterday for the next try.  Good thing, after a long fast and no sleep, I was a drained to the bone.  Her help kept me calm enough for the test.  Then she took me to the endo clinic where I proceeded to break down again (it's impossible to contain my anxiety and emotions anymore, hard as I try).  Anyway the upshot of that was that they decided to do the blood draws for CELIAC testing right then in the office with other specimens delivered to the diagnostic center the next day.

Also I was told that I am NOT hypoglycemic. Yay!  In fact, they say I am like millions of other Americans - PRE- diabetic. Boo!   (I'll have to work on THAT!).   Also found out that my Hashimoto's count shows that my thyroid is leaning toward HYPERthyroidism right now, which would account for some of the symptoms.  Unfortunately (or fortunately - less drugs to rely on) the counts aren't bad enough to warrant  HRT replacement at this point.  That was the good of the visit.

The not-so-good was that I was once again pointed toward a therapist/ psychiatrist for the rampant anxiety and growing depression.  At that moment I thought - yeah, I could use some help getting a grip.

But then --- last night -- I read a book: "Jump Start Your Gluten-free Diet" by the University of Chicago Celiac Disease Center.  (Free - downloadable - ibook; ebook; PDF)

Oh my gosh.  There.  In the book.  Where SO MANY of my symptoms, among them: weight loss, tingling/numbness in the legs, osteopenia, peripheral neuropathy, anemia (untested as yet) and - waaaait for it -  "Psychiatric disorders such as anxiety or depression."  There are other symptoms I have, but too indelicate to include here. *heh*

But, see!  I. AM. NOT. CRAZY.

Then, this morning - some GREAT NEWS!  The ACTH test results were in. Phone message:  "Miss ...., you DO NOT HAVE an ADRENAL insufficiency."  She said it twice.  Slowly.  (I deserved that attitude.  I've given the office so much grief.)   No adrenal fatigue.  No Addison's disease.  Hurray!

Add that good news to (an unprecedented) 8 hours of sleep last night and I'm feeling pretty good right now. 

Now a week for the latests tests to confirm something on this list: Celiac disease, non-celiac gluten sensitivity, wheat allergy, or FODMAP sensitivity (fermentable 'saccharides).  I don't doubt but one of these will be the culprit, especially since I have Hashimoto's disease (the same autoimmune action that can cause Celiac's).

Spelt pancakes: fluffy, delicious and
now (most likely) forbidden!
Bottom line, I'm thinking therapy will do no good if this emotion is disease related.  But KNOWING what's CAUSING it WILL!  I won't be sitting and shaking and thinking the worse.  I'll KNOW it's a wave of emotion from poor nutrition absorption, etc.   Until the final diagnosis, however, I must continue to eat gluten every day to keep up the anti-body counts for the bloodwork, specimen tests and, ultimately, an endoscope exam.  Luckily, according to the book, I can get enough gluten daily from a single cracker or half a slice of wheat bread.  I don't have to be shoving down a stack of pancakes or bowls of Kashi (darn, I love that stuff).  The rest of my diet can be less damaging and I won't be so afraid of eating anymore.

I felt good enough to run errands all morning, then after lunch I watered all the veg in the garden and seedlings on the deck.  I'm winding down now.  No sense over-extending, especially since I could be down and out tomorrow just as soon as not.  Still, the KNOWLEDGE what might/must be happening will go a long way toward calming so many of my fears.

I'll keep you posted.  Meanwhile, I think a snack and a nap is in order - both well deserved at this point. :-D  Bless you all for your comments.  They're are so welcome and comforting.  *hugs*

Friday morning update

It didn't last long.  I'm back to feeling like total crap again.  Little sleep with night sweats.  I'm glad I blogged yesterday when I was feeling so hopeful.  You all deserved a positive entry.  And lord knows I deserved a good day to remember who I really am under all this sickness.


  1. This all sounds good. They are going to get to the bottom of this (with your persistence!) Everyone I know has been diagnoses pre-diabetic!I am so relieved you are feeling better and isn't it about time!

  2. This sounds so much like what I went through. I had to take matters into my own hands to get any results.
    Keeping my fingers crossed you'll have good results.

  3. I am so glad that you're finally getting somewhere. I KNOW how frightening syncope can be - when my mitral valve first started giving me symptoms I was VERY scared too - passing out cold behind the wheel of my car in rush hour traffic wasn't pleasant and being saved by a total stranger who blocked the highway with his car before running after my car thumping on the window to "wake" me up. I was extremely apprehensive why they couldn't find the cause, which compounded the whole problem by stressing me out and putting more strain on my heart valve.

    Once you have a diagnosis, even though the problem / symptoms may remain, it is so much easier to handle as one doesn't feel so very alone and vulnerable. A powerful thing the mind - it can influence / affect all of your body.

    Not that you are alone - you're in my thoughts and prayers constantly. God bless Kris.

  4. Good morning my lovely. Waiting for the kettle to boil I was thinking "must write to Kris, is there an update", came to log on and voilà, good news :}

    Gluten intolerance or full-blown Celiac are not funny BUT this is treatable, controllable, and you will be able to move on and have your life back. Shame about those pancakes, they look wonderful :{

    Thinking of you, huggles from Hobbit. xx

  5. I'm glad your ACTH stim test came back good. I actually have a dog with Addison's, but I'm pretty sure dealing with it as a human might be more involved (though not having to guess how the patient is feeling could be nice...) :-)

  6. Thanks, all, for checking in on me and leaving such warm and helpful comments.

    Unfortunately, it didn't last long. I'm back to feeling like total crap again. Little sleep with night sweats. I'm glad I blogged yesterday when I was feeling so hopeful. You all deserved a positive entry. And lord knows I deserved a good day to remember who I really am under all this sickness.

    I may go to a therapist/psychiatrist - after all, they could prescribe something for anxiety, no? I just can NOT believe the difference I feel today compared to yesterday. Very Jekyll and Hyde.

  7. Aw Kris, sounds like a real life trial. At least you're weeding your way through possible diagnoses. Hopefully you'll get something definite soon!

    1. Hi, Leigh. It's getting to be a 'negative' test result for something is feeling more like bad news than good anymore. Meanwhile, I get worse... Thanks for stopping by. :-)

  8. Stress/anxiety have the power to magnify every symptom until you think you're losing your mind. Controlling or calming that part of the brain will help you and the doctors identify the rest of the symptoms so you can begin treatment. Soothe the beast, Kris, instead of letting it devour you.

    1. You are so right, Tammy. At this time I wish I wasn't living alone - there's little to distract me from the maelstrom in my head. But I do try, honest.


Thank you for visiting. I appreciate your notes, comments and questions and will try to reply to each one! :-)