Newbie struggling with going GF, need to vent

[Guest guest]

I don't know how you all do it. Going GF is such a frustrating challenge,

daily. Mind if I vent for a bit? My friends and family are supportive, but

they nevertheless don't fully understand how much time, money, energy, and

attention it takes to make this transition a successful one. I sure didn't

grasp how tough it would be either. Having failed at it several times so far,

I'm struggling to accept that there surely be some more failures to come in

maintaining this lifetime commitment.

I went gluten free two months ago. Or so I thought. It started with the

gastroenterologist's blithe assurance that celiac is not a big deal at all, just

avoid these three little foods and voila you'll be good to go again.

A consult with the dietician, several reference books, and sites like celiac.org

quickly disabused me of his notion that it'd be easy. Don't you hate it when

doctors send you away with a quick pat on the head when they have so little clue

what kind of big life changes they're being dismissive about? Grrr. But still,

the bottom line was -- simple or not -- purging my life of gluten is what needed

to be done. So I got on with it.

The pantry was immedately cleared of everything that was so much as manufactured

in the same factory as gluten. Oat products were purged too, to err on the side

of caution. Porous kitchen implements, wooden bread boards, toaster, waffle

iron, and porous pans (sniffle, 40 year old cast iron, ouch what a waste) were

all retired. Counters diligently scrubbed. Vitamins got replaced with GF

versions. I tracked down every one of my meds' manufacturers and inquired about

gluten. (No responses on those, by the way. So thank you to the person in the

thread earlier today who pointed out the list of GF medicines!). I turned down

offers of food from anyone unless it came in an unopened package of completely

safe ingredients and manufacturing conditions. I avoided restaurants

altogether. I memorized lists of WRBO ingredients, screened every label, and

spent hours carefully shopping, and tried to remember to be grateful for having

been diagnosed in an age of rising awareness and better labeling. How hard it

must have been for those of you taking this path even just 5 or 10 years

earlier. Good grief, even in 2009 it's quite an effort. But it felt good to

know that with each step I was getting closer to becoming pain free.

But the very first thing I opened from my new all-GF pantry? Yep. Gluten. In

all that careful shopping, I'd somehow managed to overlook that soy sauce was

the _very second item listed_. Darn it. How'd I miss that in the store? So I

threw that out too, and tried again.

Eventually, about a month in, I began to feel more like myself again. No longer

perpetually exhausted, less often dogged by shooting pains and severe gassiness.

Diligence finally had paid off, yes!

With a light at the end of the tunnel showing, I decided that it was time to

learn how to do GF in a restaurant. So I picked an establishment with a

gluten-free menu option, figuring it at least indicated a degree of awareness.

I grilled the waitress on salad ingredients, both when ordering and upon

delivery. Oh what an eye roll she was trying to hold back by the second time,

but she did humor me graciously. I thoroughly enjoyed the dinner of plain green

salad topped with kidney beans -- and then within days was back to being so sick

that even symptom-control meds had stopped working.

So I investigated: what in that salad could possibly have snuck in the gluten?

Was it a simple case of incidental cross-contamination? Or had I failed to ask

enough questions? Upon further research, it turned that out some canned beans

apparently have added gluten. Lesson learned. Mentally noted.

It's such a bumpy road. Another month later, symptoms still have slowed only

slightly and antibody levels are still rising. According to the doctor,

somewhere somehow I must still be getting gluten. Darned if I can figure out

how. The search continues.

I'm glad to know that you're all out there making it work. It's a comfort to

know that the bumpy road does eventually smooth out. Yes, accidents will

continue to happen. But you give me hope that the mistakes grow fewer and

farther between over time, and that we get more savvy about figuring out what

causes them. You've all been newbies once too, so I know you understand the

mixture of physical stress and mental frustration that under-controlled celiac

stirs up. Thank you for having indulged me in a good long vent.

-Carina