FINALLY!

[MoniDew]

I got a doctor to LISTEN! LOL! How often does THAT happen?!

Anyway, he confirmed my self-diagnosis, but...

I thought I had the MILDEST form of celiac/gluten intolerance. Turns out, I have it pretty severely!

I have a lot of brain damage (aka grain damage)

a major psychosis/personality disorder from it,

my blood cells are twisted/distorted from it - I have 2 rare kinds of anemia because of it

every organ & system in my body is being tested right now, to find out just exactly how badly the toxins from this have done damage. He thinks it's extensive!

So, needless to say, I'm pretty much in shock... but hopeful! He gave me a Rx strength folate (for one of the anemias) to help my body detoxify from the grain damage. And I had a pretty bad detox 24 hours. But feeling so much better today (except ACHY! ALL OVER!)

Feeling like I could use a little emotional support right now, so I'm turning myself in!
_________________
Love,

MoniDew

diagnosed with genetic celiac disease (celiac sprue) 12/2009
daughter & granddaughter carry genetic markers, too
gluten, dairy/casein, peanut, and soy-free

[celiacmaine-iac]

Wow MoniDew! Sorry to hear the damage is so extensive, but you at last have some answers and a place to start from. I hope you are soon on the road to feeling much better.
_________________
Steph

[aklap]

ACK! Sorry to hear that.

How is your new doc testing for all brain damage?
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[ostrich]

Yeah, I'm kinda curious as to how he came to all those damage conclusions...

But anyway, congrats on finally getting somebody to listen!
_________________
Ostrich :>--O==={

Time falls away, but these small hours
These little wonders still remain

[Flygal]

It pays to be persistant. Wish it didn't have to be so. I guess there are a lot of hypocondriacs out there who make doctors less trustful.

Glad you know what's going on, though.
_________________
Judy

[nancw]

Wow - that's a story! Glad you have a good doc on your side.

What is the detox from - gluten? Thought you were already GF?
_________________
Nance

gluten, dairy, soy, rice, yeast and 99% grain-free

[NickisDragon]

Best wishes for a speedy recovery.
_________________
The opportunity to find happiness dances within every moment, beats within every heart, and grooves within every occurrence, situation, and event----Let's dance!.

Nicki

B-Day: January 18
DX: October 2005

[smalltownslackermom]

I'm sorry to hear that there has been so much damage to your system but Congratulations on finding a Dr that is supportive! It does make me hopeful that the info on how common CD is is getting around because I also recently found a Dr who gave a sh*t.

I wish all the best for your healing.
_________________
son - high ttg - 4/09, pos. biopsy 5/09
self - negative bloodwork 5/09, pos. biopsy 11/09
sister - gf for ~3 years and is a new person
niece - positive ttg 2/10, foregoing biopsy

[MoniDew]

A little better understanding now, about a month later.

The damage (and the detox) is from homo-cysteine, the inflammation my body produces in reaction to - not just the gluten - but my body's autoimmune response. I have been gluten free for a while now. But my homocysteine levels were still too high and causing inflammatory processes all over (in my brain, joints, blood, etc.) He actually tracked damage by tracking homocysteine.

I know it's a bit unorthodox. But the orthodox ways don't work for me. This guy could have a PhD in methylfolate (the type of folate I need to treat one of the anemias I have.) Because it's the methylfolate that reverses the homocysteine and allow me to think & function better. I'm so glad that I decided to try this!

By the way - any other celiacs out there taking Deplin (methylfolate)?
_________________
Love,

MoniDew

diagnosed with genetic celiac disease (celiac sprue) 12/2009
daughter & granddaughter carry genetic markers, too
gluten, dairy/casein, peanut, and soy-free