Well, or not? - was Re: giving blood

[Guest guest]

>

> Okay Esther, so here is my question...If all is well with your

> celiac stuff, then how is it that you seem to get glutened often,

> but everything is okay? Especially with the recent episode,

> wouldn't you think that things wouldn't be good with your trans. and

> other stuff then? Maybe I don't understand I guess, but that would

> seem odd to me that all is well with the celiac disease, but you

> still keep getting sick. I guess I would look elswhere for answers

> as to why you are getting sick and not assume it's the celiac

> disease???? Just a thought.

>

> Rhiannon

>

These are very good questions indeed.

I think part of the answer is perception. It's hard to keep track

of other people's lives, so it probably SEEMS like I'm sicker than

I am. I don't e-post here about every successful meal. I only

post about the bad times mainly. So, while you may remember that

I JUST got glutened at Outback, that was really a month ago.

That particular glutening did knock me on my behind for a few

days and leave me with a monster migraine for about 5 days.

So, maybe I get glutened by restaurants about once/month or less.

But, to read about my griping, you might get the impression that

I'm still being chased by the gluten-goblin version of the

Hounds of Heaven.

Also, my celiac story is a weird one. I was sick ALL the time

for many years. Was blood tested for celiac in 2000 but came

up all negative. Endured sigmoidoscopy (while 7 months hugely

preggo, thank you very much) and a myriad of other tests to

try to ascertain why I was relentlessly sick. Never found an

answer. Got sicker and sicker and sicker. By summer 05 I was

desperately ill, bleeding where one should NEVER see blood,

in the necessary room all day - to the point of endangering

my children! (It was THAT bad.) The doc ran yet more tests,

again throwing in the celiac panel (just for yucks). This

time the celiac panel included transglutaminase. (It didn't

in 2000.) This was the ONLY test that came back high. And when

I had the endoscopy and small-bowel follow through, THEY came

back clear too! So, I think that in terms of damage from

celiac, I was really right at the very beginning stages of

total intestinal meltdown. Even though I was physically miserable,

my body was apparently pretty able to keep on running. Kind

of like just topping off the car engine with new oil instead

of ever really draining out the old oil and putting in good

stuff - the car can run for a long time like that, but it's

getting damaged slowly but surely. I think that's my celiac

story: I was sick for a long time but not sick " enough " for

the damage to show on the traditional tests in the traditional

ways. Very puzzling, actually. Only my primary care doctor

is willing to use the word " celiac " . The GI doc STILL won't

say the word. (I can't explain why. It puzzles me.)

Perhaps I recover from glutenings more easily than if I'd

gotten to full-blown intestinal meltdown before diagnosis.

Before diagnosis, I was sick constantly.

Early after diagnosis I'd be sick for a day from glutening.

Now it seems to be getting harder and harder to heal.

The recent mystery-glutening was Sunday night. Today's Wednesday...

my stomach is still tender to the touch, I'm still not interested

in eating, still enduring socially intolerable wind gusts.

Part of the problem is our life style. I know that. I'm ashamed

to admit it publicly. But our life style is such that eating

out is by necessity more often than by choice. I can't really

explain it. If I had a major life overhaul then I'd cook at

home every day and we'd have a happy family meal at our own

dinner table 3x/day every day. But the major life overhaul

hasn't happened yet and we still eat out FAR too frequently -

to the detriment of our collective health (I fear) and our

family budget (I know for CERTAIN).

Back to the question - yes, the transglutaminase has gone back

to zero as of December 05, and has stayed at 0 on subsequent

tests in April 06 and July 06.

I guess it takes more than a once/month accidental glutening to

kick the transglutaminase back up to abnormally high levels.

In diabetes there's a similar concept - the A1C blood test. It

shows the average blood sugar level over the previous 3 months

or so. My A1Cs remain good although my blood glucose gets

excursions into bad ranges. So, even though my bood glucose can

run high, the A1C stays low. While I get glutened, the trans-

glutaminase hasn't gone up.

I never ever want to be as sick as I was a year ago right now.

A year ago right now I was bleeding, I could barely eat, I

was in relentless pain, I spent the day running from necessary

room to necessary room. I literally endangered my children

because the need for the necessary room was so frequent and so

urgent. I don't know how many times I would have to park my

car RIGHT HERE RIGHT NOW, lock my kids in the car, and RUN

as fast as my legs could carry me to the nearest facility. I

didn't have time to unbuckle my kids. If I were to avoid

covering myself with soil and blood, I had no choice but to

leave my kids in the car... in the heat... in strange places.

It was B A D BAD. A year ago right now we took a 2 week trip

as a family through Michigan and parts of Canada. I could

barely even look at food. By the end of the trip I was avoiding

eating altogether. The family would sit down at a meal and I'd

go walk around outside the restaurant. If I did eat a meal, it

meant that I had to stop at EVERY possible necessary room

for the next umpteen miles. Every exit. Every rest area. Every

place where I could use a public facility. If my oldest child

said in her whiny voice " Didn't mommy JUST go to the bathroom? "

One Freakin' More Time, I swear I was going to wallop her.

Getting sick on Sunday and still being unable to handle

much in the way of food on Wednesday is a true walk in the

sunny spring park among flowers and birds versus the hell I

was living August 05.

But I'm well enough to give blood. And my hematocrit is surprisingly

good. WOOO HOOO!

It takes more than a once/month accidental illness to knock

hematocrit down or knock transglutaminase back high.

Lastly, to your suggestion:

If it were something OTHER than gluten... say, for example,

xanthan gum or caramel coloring or olive oil or dairy....

wouldn't I be far sicker than I am?

I've had appetizer X a dozen times but only got sick once.

Seems more likely that

a - the recipe for appetizer X changed but they collectively FORGOT

b - there was cross contamination

c - I inadvertently glutened myself by picking up the wrong fork

d - I got gluten from the table or

e - I do indeed have deep-seated mental issues about gluten and

just wondering about gluten causes my belly to go WAARGH! and

react.

Supposin' it's lactose that's bothering me. (At home I use the

lactose-free milk.) Lactose intolerance shouldn't hit until

the food reaches the large intestine. So, the timing wouldn't

be right for lactose issues with the sour cream or cheese on the

appetizer. A problem food that causes issues within minutes is

one that either bothers the esophogaus, the stomach, or the

small intestine. It takes HOURS for something to reach the large

intestine. Yes, I am in total denial about the possibility that

I'll have to give up dairy altogether. The thought of it gives

me the heebiejeebies.

The meal in question was: potato slabs with bacon and cheese,

with sour cream, BBQ chicken, fries, cole slaw, and Coke. Oh,

and ice cream with hot apples on it for dessert, but I was

already sick by then and only ate a nibble.

(Yes, I'm the self-avowed Queen of Nutrition - NOT!) All of the

items were on the GF menu. I double-checked the GF menu after

the meal because I worried I may had mis-read it.

I guess, in short, I'm grateful for being as healthy as I am.

For all my complaining, I really am doing OK on the whole.

A month sure goes by fast in someone else's life, doesn't it.

The Outback incident was in early July (or even late June). And

this incident is in August. So, for all my grumbling and whining,

it's really once once/month or so that I have a problem in a

restaurant. I eat out FAR FAR more often than that! (I eat out

at least 3 times/week and lately up to about 10x/week.)

Yes, it's scary.

And when you realize " a celiac is eating out 10x/week??!! " , you

realize I'm playing with fire.

And when I think about it in those terms, I too start to wonder

if I'm downright suicidal. Maybe I need to be locked up and fed

through a straw because I'm sporting one of those jackets with

the really really long sleeves.

Esther in RI