Re: Newbie struggling with going GF, need to vent

[Guest guest]

I think a hug would be appropriate right now

There is nothing wrong with getting upset or frustrated. I know I've

been there. In fact, I believe there is a 5 step process to accepting

the gluten-free lifestyle. Of course if you start off all happy go

lucky, eventually the anger or frustration will set in until you can

come to terms with the lifestyle.

Plus, there is nothing worse than getting secretly contaminated! It's

almost like a big slap in the face, especially when you're SO diligent!

The good news, it will get better. In other words, you will get better

in being able to accept and enjoy the diet. The process never changes,

you may still have CC incidents, but your ability to work past it will

improve.

I'm two years since dx and wow did I ever have a roller coaster of

emotions! I did everything backwards! In other words, my anger didn't

hit till the end if last year.. Can we say delayed response? I still

have random incidents, but the turnaround time with coping is much

quicker.

One thought - sometimes Celiacs have other allergies. Perhaps the

salad was a reaction to another food?

Best wishes and it will get better, promise... Oh! And you're not alone.

~ Crystal Brown

Solano County Celiacs

>

[Guest guest]

My daughters antibodies have not gone down and we are completely gf. Other things can cause such as a virus and severl doctors told me they will not change much because hers were not that high to begin with. Anyone else have experience with s gf diet but antibodies not going down?CSent from my iPhoneOn Nov 19, 2009, at 9:09 PM, "carinazona" <cczona@...> wrote:

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

[Guest guest]

Dear Carinazona, Thank you so much for your venting. It could have been me writing. I was just diagnosed and put on the "simple diet" of no gluten. Amazed by all the things where it hides and may not even be on the label. All I can say is that when it has worked and I'm at least mostly gluten free I feel so much more energetic, and my digestive system so much better. Now to find the last few hiding glutens in my diet! From: Cara <cara@...>" " < >Cc: " " < >Sent: Fri, November 20, 2009 12:38:34 PMSubject: Re: [ ] Newbie struggling with going GF, need to vent

On Nov 19, 2009, at 9:09 PM, "carinazona" <cczonagmail (DOT) com> wrote:

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

[Guest guest]

I went GF seven years ago and at that time had antibodies that Dr. said were about the highest he's ever seen (and he's a long practicing gastro doctor). I had my antibodies tested 2 years later and they were STILL the same astronomical level that they had been when I BEGAN the GF diet. I had been VERY careful about the diet, watching out for cross contamination, etc. etc. I felt hopeless to get the antibodies down. Then FIVE years after I had been GF, I was tested again (I had NOT added or eliminated any foods in my diet, still had the same lipsticks, sunscreen, soaps, shampoos, etc.) To my SHOCK, all my antibodies were COMPLETELY normal. Dr. said that sometimes it takes some people a very long time to see results. FIVE YEARS??? Of course, maybe it only took 3 years because I wasn't tested between years 2 and 5. My Best,CarynOn Nov 20, 2009, at 12:38 PM, Cara wrote: My daughters antibodies have not gone down and we are completely gf. Other things can cause such as a virus and severl doctors told me they will not change much because hers were not that high to begin with. Anyone else have experience with s gf diet but antibodies not going down?CSent from my iPhoneOn Nov 19, 2009, at 9:09 PM, "carinazona" <cczonagmail> wrote: 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

[Guest guest]

Carina-

Hang in there, its totally normal to feel frustrated. I have been gf for almost

20 years and it started when I was a kid. That was really freaky because I

wasn't even in control of my food. Now its really smooth for me and I only have

an accident about once a year. So tip #1 is be patient with yourself. Here are

a few more resources:

Jax s Lowell- I swear she saved my life. Her book Against the Grain is

wonderful. It has lots of good advice and its fun and funny and gives you hope,

but it is written in the 90s so the info is a little out of date. She has a new

book The Gluten Free Bible. It has all the technical info and then a lot of

attitude stuff as well: a whole chapter What to Do When They Don't Get It.

Run out and get this book.

If you have an iphone- get the app Is That Gluten Free? It’s a long list of

validated gf grocery items.

Forget about antibodies. It takes a long time for them to settle into place.

It’s not a report card. Focus on your body instead. Your system is freaked

right now, it will calm down and your symptoms will decrease. I had a lot of

other sensitivities when I was diagnosed (dairy, corn..) because I was so out of

balance and they all went away after a year of gluten free living. I think this

is pretty common.

Cook super delicious meals at home and for you friends. FEASTS! Consider

cuisines that are naturally pretty gf so you wont be making too many

substitutions.

Spend the extra money on what you really miss- I am writing this over a warm gf

blueberry muffin. (Whole foods brand in the freezer) Try a bunch of breads until

you find one that you like.

Mourn- it’s a big loss and it’s not going away. That is really hard. Don't

feel bad for being bummed.

Lastly and it seems like you are doing this, get involved with lists or groups

or other people who are fighting for the cause of gluten freedom.

Its really great you were diagnosed and on the way to feeling soooo much better.

Hang in there and keep venting!

Ruth