Re: Question about Results

[Guest guest]

>

> My story is a little complicated.

>

> It all started 20 years ago with mystery, painful, sudden,

explosive,

> desperate " D " after some meals. I had test after test after test

after

> test for the last 20 years.

>

> I got worse and worse.

>

> Last summer I got a rash and got a LOT sicker. I got " D " up to

10x/day

> and I started to bleed from my bottom.

>

> So, doc ordered colonoscopy and celiac blood test. The celiac blood

> tests were " just for yucks " . But lo, the transglutaminase came back

> high. (Nothing else did. Only TTG.) So, the doc ordered a scope

along

> with the colonoscopy.

>

> The scope revealed no signs of celiac. The colonoscopy revealed a

rare

> form of colitis. But, due to the TTG and how sick I was, we decided

I

> should go GF any way. I went GF at the beginning of October and

WITHIN

> DAYS I was feeling better. WITHIN DAYS the bloody D was GONE. G O N

E

> GONE, I tell you. It was a miracle. I was a whole new woman.

>

> Meanwhile, my biopsy was sent out to a different hospital for a

second

> opinion because it all seemed so contradictory. The 2nd hospital

also

> said " no signs of celiac " .

>

> After 3 months we did a second test of my blood, and a small-bowel

> follow-through. The SBFT was to see if the celiac was lower down in

> the small intestine, in a spot missed by the biopsy. This can happen

> in patchy celiac or celiac low down in the small intestine. The SBFT

> revealed no celiac signs in the part that could be seen. But the

> terminal ileum couldn't be seen no matter how hard the radiologist

> tried to get it to budge. (We tried all different positions and

> several mechanisms for pushing on the terminal ileum to get it to

> wiggle. No luck. When I reached my maximum radiation dose, we gave

up.)

>

> So, biopsy said " no signs of celiac " and SBFT said " no signs of

> celiac " but TTG went from high to zero AND GF made the D stop.

>

> So.... Instead of looking at is " I don't have celiac because the

> biopsy and SBFT say 'no celiac' " , I'm looking at it as " I am THE

> LUCKIEST CELIAC IN THE WHOLE HISTORY OF HUMANITY!! I GOT SICK ENOUGH

> FOR DIAGNOSIS BEFORE SEVERE DAMAGE WAS DONE! HOOOOOOORAY! I MUST

HAVE

> THE SMARTEST DOCTORS IN THE UNIVERSE. " Sure, it took 20 years of

> misery to finally figure this out. But the damage was not done.

>

> I'm sure that if we had diddled around with more tests and said

> " biopsy is negative so let's try removing your gall bladder " , then

by

> the time we figured out celiac on a 2nd try that I would have

> unequivocal damage. But I'm not willing to wait that long. I've

> suffered enough and the GF diet is working MIRACLES for me. No D. No

> pain. No bleeding from places where one should NEVER see blood. AND,

> my transglutaminase has gone back down to zero.

>

> I am dancing in the streets for being THE LUCKIEST CELIAC IN THE

> UNIVERSE.

>

> I don't care that the biopsy was negative.

>

> At first I was bummed that the biopsy and SBFT were negative. I was

> totally confused. And believe me, I did NOT want to forsake Tim

> Horton's donuts!!! Nor Hostess Cupcakes, nor Little Debbie snack

> cakes, nor cheesecake at a restaurant, nor marinated steaks at

Bugaboo

> Creek nor Portabella Mushroom soup nor any of a gazillion other

things

> I miss. (I don't miss beer as I gave that up 22+ years ago.) But

once

> I saw the miracle of GF in my own life, I was pretty sure of the

> diagnosis. And when I saw that transglutaminase went to zero, there

> was no longer any lingering question in my mind.

>

> I'm the luckiest celiac in the whole history of humanity.

>

> May you be as well. We can be tied for First Place in the Lucky

Race.

>

> Esther in RI

>

>

> ****

Esther,

Thanks for writing back and explaining it all. Obviously you DO have

Celiac. Sounds just terrible what you went through but sounds like

the best ending of a story ever. I am fortunate enough to not have

any super bad symptoms and am still hopeful I don't have it but if I

do I know it will be ok as long as I can drink a hard cider and

still have my nachos (my favorite snack in the whole world) Cheers,

Sally