Well, or not? - was Re: giving blood

[Guest guest]

> Esther,

>

> The eating out issue is one of my biggest differences with so much of

> the talk on this site. Our family like yours lives a lifestyle where

> we eat more meals out than we do in. It is a dangerous lifestyle but

> it is our reality too... I respect the people who are busily

> preparing food all day for the GF and non GF members of their family

> separately, but in our house that is just not possible.

=============

please excuse my ignorance here, but what kind of lifestyle requires

eating out in restaurants all the time?

You have to understand my background to understand my question. I

grew up in a small town in South Africa where the first restaurant

opened when I was 16. I never even knew that pizzas existed until 6

months later a Pizza Den opened 40 min away.

I just never developed a love for restaurant food (find it all too

salty) and can't imagine having to eat it once a week let alone 10 or

more times a week.

Shez

[Guest guest]

(((((ESTHER))))) I just wanted to say that I'm sorry you had such an awful pre-diagnosis time. Having had issues of my own while DD was an infant, I can relate to the additional stress of feeling like you're not being the parent you should and want to be. But the fact that you were stressed out about it means you really are a great parent - if that makes any sense.

I also wanted to say that I love your attitude - and am especially amazed at how upbeat, positive and even funny you are after going through all that.

Thanks for bringing a smile to my face at least once per day.

)

Trudy

-------------- Original message --------------

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

BR>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 thatI JUST got glutened at Outback, that was really a month ago. That particular glutening did knock me on my behind for a fewdays 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 thatI'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 timefor many years. Was blood tested for celiac in 2000 but cameup all negative. Endured sigmoidoscopy (while 7 months hugelypreggo, thank you very much) and a myriad of other tests totry to ascertain why I was relentlessly sick. Never found ananswer. Got sicker and sicker and sicker. By summer 05 I wasdesperately ill, bleeding where one should NEVER se

e blood, in the necessary room all day - to the point of endangeringmy children! (It was THAT bad.) The doc ran yet more tests,again throwing in the celiac panel (just for yucks). Thistime the celiac panel included transglutaminase. (It didn'tin 2000.) This was the ONLY test that came back high. And whenI had the endoscopy and small-bowel follow through, THEY cameback clear too! So, I think that in terms of damage fromceliac, I was really right at the very beginning stages oftotal intestinal meltdown. Even though I was physically miserable,my body was apparently pretty able to keep on running. Kindof like just topping off the car engine with new oil insteadof ever really draining out the old oil and putting in goodstuff - the car can run for a long time like that, but it'sgetting damaged slowly but surely. I think that's my celiacstory: I was sick for a long time but not sick "enough" forthe damage to show on the tradi

tional tests in the traditionalways. Very puzzling, actually. Only my primary care doctoris willing to use the word "celiac". The GI doc STILL won'tsay the word. (I can't explain why. It puzzles me.)Perhaps I recover from glutenings more easily than if I'dgotten 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 interestedin eating, still enduring socially intolerable wind gusts. Part of the problem is our life style. I know that. I'm ashamedto admit it publicly. But our life style is such that eatingout is by necessity more often than by choice. I can't reallyexplain it. If I had a major life overhaul then I'd cook athome eve

ry day and we'd have a happy family meal at our owndinner table 3x/day every day. But the major life overhaulhasn't happened yet and we still eat out FAR too frequently -to the detriment of our collective health (I fear) and ourfamily budget (I know for CERTAIN). Back to the question - yes, the transglutaminase has gone backto zero as of December 05, and has stayed at 0 on subsequenttests in April 06 and July 06. I guess it takes more than a once/month accidental glutening tokick the transglutaminase back up to abnormally high levels.In diabetes there's a similar concept - the A1C blood test. Itshows the average blood sugar level over the previous 3 monthsor 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 necessaryroom to necessary room. I literally endangered my childrenbecause the need for the necessary room was so frequent and sourgent. I don't know how many times I would have to park mycar RIGHT HERE RIGHT NOW, lock my kids in the car, and RUNas fast as my legs could carry me to the nearest facility. Ididn't have time to unbuckle my kids. If I were to avoidcovering myself with soil and blood, I had no choice but toleave 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 tripas a family through Michigan and parts of Canada. I couldbarely even look at food. By the end of the trip I was avoidingeating altogether. The family would sit down at a meal and I'dgo walk around outside the restaurant. If I did eat a meal, itmeant that I h

ad to stop at EVERY possible necessary roomfor the next umpteen miles. Every exit. Every rest area. Everyplace where I could use a public facility. If my oldest childsaid 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 handlemuch in the way of food on Wednesday is a true walk in thesunny spring park among flowers and birds versus the hell Iwas living August 05. But I'm well enough to give blood. And my hematocrit is surprisinglygood. WOOO HOOO!It takes more than a once/month accidental illness to knockhematocrit 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 o

nce. Seems more likely that a - the recipe for appetizer X changed but they collectively FORGOTb - there was cross contaminationc - I inadvertently glutened myself by picking up the wrong forkd - I got gluten from the table ore - I do indeed have deep-seated mental issues about gluten andjust wondering about gluten causes my belly to go WAARGH! andreact.Supposin' it's lactose that's bothering me. (At home I use thelactose-free milk.) Lactose intolerance shouldn't hit untilthe food reaches the large intestine. So, the timing wouldn'tbe right for lactose issues with the sour cream or cheese on theappetizer. A problem food that causes issues within minutes isone that either bothers the esophogaus, the stomach, or thesmall intestine. It takes HOURS for something to reach the largeintestine. Yes, I am in total denial about the possibility thatI'll have to give up dairy altogether. The thought of it givesme the h

eebiejeebies. 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 wasalready sick by then and only ate a nibble.(Yes, I'm the self-avowed Queen of Nutrition - NOT!) All of theitems were on the GF menu. I double-checked the GF menu afterthe 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). Andthis 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 arestaurant. I eat out FAR FAR more often than that! (I eat outat 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??!!", yourealize I'm playing with fire.And when I think about it in those terms, I too start to wonderif I'm downright suicidal. Maybe I need to be locked up and fedthrough a straw because I'm sporting one of those jackets withthe really really long sleeves. Esther in RI

[Guest guest]

My lifestyle requires a lot of eating out, I travel... and I do a lot of

business over meals. I've actually had very good luck with eating out in

very nice restaurants (which is where I'm lucky enough to often eat in). I

can't change my job right now nor do I want too. On top of that although I

do enjoy cooking I really enjoy eating out in fine restaurants.

[Guest guest]

> So, for some of us, we are having

> to unlearn and re-learn everything from the bottom up, which can be

> time consuming and frustrating on top of lives and schedules that may

> have been full in the first place.

=============

You've taught me a lot. I didn't realize there was such a huge

difference between American and South African homes. My American

husband grew up eating home cooked meals because his father is a

cardiologist who is a fanatic about diet and his mother a food

obsessed type 1 diabetic (by food obsessed I mean someone who watches

the calories of every mouthful, not someone who eats a lot)

I think I see now why people are often so traumatized by the celiac

diagnosis. This has been something that puzzled me a lot. I was so

relieved to find out what was wrong with me that I embraced the GFCF

lifestyle whole heartedly. I never realized that for many people it

required retooling their lives completely. For me, it was just

business as usual, I just used slightly different ingredients. We

have always eaten a diet rich in fruit and vegetables so the changes

we made to our diets were minimal.

I too have always eaten a lot of meals with friends, but in my social

circles it generally entailed us eating homecooked meals at each

other's homes. My South African friends in particular took great

pride in their skills in the kitchen .

thanks for the explanation.

Shez

[Guest guest]

When I read my own words it really sounds like I never had a

homecooked meal in my life, which is not the case. I think my

grandmother started the ball rolling by wholeheartedly embracing the

processed food revolution of the 40s, 50s and 60s. Then my mom took

it a step further by frequently supporting the talents of other

cooks. Subconsciously, I guess I saw that as a challenge to go yet

another step. I'm pretty sure that if I had kids they would view

cooking their own food like I see making my own clothes. I know that

lots of people do it and really like it, but to me it's a vague

category of extreme activities like running with the bulls or cliff

diving.

Lori in ATL

>

>

> Your entire posted resonated. You typed the words right of my

fingers.

>

> Thanks,

>

>

> If you are raised in an environment where going to the market and

> preparing food from scratch every day is commonplace, the skills

> become common sense. Yes, grocery shopping is a skill, grocery

> shopping on a tight budget is art. So, for some of us, we are

having

> to unlearn and re-learn everything from the bottom up, which can

be

> time consuming and frustrating on top of lives and schedules that

may

> have been full in the first place.

>

>

> But, that's just me.

> Lori in ATL

>