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Is It Really Possible To Be 100% Gluten-free?

Jesse E

By Jesse E
in Coping with Celiac Disease

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Jesse E Rookie
Jesse E
Posted

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Guest j_mommy
Guest j_mommy
Posted

No I don't think you can ever be 100%.....but you can get as close as you can. You have to worry about CC b/c you are damaging your body by not worrying about it!!!

So in the end you be deligent and knowledgable and proactive fo ryour health and do the best you possibly can!

oceangirl Collaborator
oceangirl
Posted
No I don't think you can ever be 100%.....but you can get as close as you can. You have to worry about CC b/c you are damaging your body by not worrying about it!!!

So in the end you be deligent and knowledgable and proactive fo ryour health and do the best you possibly can!

Hi. I've been as "100%" as I can be for a year and a few months, as much as you can be on Planet Earth where wheat exists, and, yes, it helps! But I was experiencing intense pain along with 28 other specific and difficult symptoms so the difference is very clear now that MOST of those symptoms are gone. My "glutenings" are getting a little furthur apart-slowly- and I am HIGHLY reactive to gluten. I make all my own food and NEVER eat out- it just wasn't worth it. Just as a vegan can never truly be 100% animal-free (small animals are ground in crop-cutting equipment, e.g.), literally, you probably can't have zero gluten. But you can feel better.

lisa

ravenwoodglass Mentor
ravenwoodglass
Posted

I have been as close to 100% gluten free now as possible for almost 4 years. The only time I run into a gluten issue is when I choose to risk by eating a processed product made in the same facility. And I don't do that often because I don't like to play games with my mental and physical health. My home is gluten-free, my pets are gluten-free, my toiletries and such are gluten-free, and I wash not only my hands before I touch my food I also wash the food when appropriate.

Anyone who eats an apple, or any other produce including the 'we washed it' bagged stuff from the store without first washing it and their hands is asking for more than just a glutening.

Being gluten light because a person thinks it is not possible to avoid it completely is like finishing off that bottle of boose before you drive because you already had a couple drinks and one more won't make a difference.

If I had not accepted that my diet needed to be as fresh and unprocessed as possible I would still have DH sores from even slight cc and my arthritis and nerve damage would still be with me. Did it take some getting used to, of course. Was it easy at first, definately not. Now though it is easy and I can not believe how little grocery shopping cost me now. I buy fresh or frozen veggies and fruits, beans and unproccessed rice, potatoes and unseasoned fresh organic meats, those are my staples. I do buy a loaf of bread and a couple packs of pizza shells a month that I use as a pita replacement and I only buy processed mixes from dedicated facilities. Also with the new labeling laws and the government having decided how much poison we can eat I call to double check on barley in stuff even if it is marked gluten free, Rice Dream taught me a good lesson with that one.

Anyway you need to find ways to tell yourself that you can do this, not ways to tell yourself it is not worth doing because it is too hard and using that as an excuse for risky consumption.

tom Contributor
tom
Posted

I say wash your hands and wash the apple. :)

Doesn't matter what's on the fridge handle if you wash after touching it, right?

What's the longest you've ever been able to go 100% gluten-free?

While I believe I'm very sensitive to gluten, due to the severity of symptoms in '02 & '03, I really haven't been glutened enough since then to know.

I eat in and believe I'm 100% gluten-free since March 15, '04.

How often do you get glutened?

One time since starting seriously gluten-free in Dec '03.

I think I'm one of the rare celiacs who believes he can go 100% gluten-free for life. ;)

Have you considered other food intolerances masquerading as a glutening?

emcmaster Collaborator
emcmaster
Posted
I think this is an important question because gluten molecules could theoretically get into just about anything and be anywhere these days. For example, a friend who just ate a wheat-bread sandwich could come over to my apartment, touch my refrigerator door handle and get gluten on it. Later I could touch the same handle, pick up a piece of celery with my hand and eat it and gluten myself.

Or in the grocery store, someone who recently ate an oatmeal cookie with their hands could pick up an apple, put it back down, and later I could buy that same apple and eat it and get glutened.

Yep. This is why I thoroughly wash my hands and food before I eat it. I would wash my hands, wash the apple, set the apple on a clean plate, wash my hands again and THEN eat it.

cyberprof Enthusiast
cyberprof
Posted

I think it is possible to be 100% gluten free but it involves having/doing the following: gluten-free house, not eating out or at business lunches/dinners, weddings, parties, while traveling etc., not eating in restaurants or friend's houses, not eating processed foods, and being 100% sure of your cosmetics, spices, condiments etc.

I approach eating as a surgical event: Wash my hands, use a clean plate, covered microwave dish. I avoid eating things with my fingers. I don't put things down on counters unless I have to and then make sure that the counter is clean and I don't put the "food" side of lids down etc. I wash forks/spoons/knives before I use them. I throw out food that could even be possibly contaminated. At work I use the microwave only when absolutely necessary and I cover the dish with a lid or plastic wrap with a teeny-tiny steam vent (steam goes in, not out).

Having said all that, I don't think it's possible for me to be 100% gluten free, as I have a high-level job that requires business lunches and dinners, traveling etc. And our extended family likes to eat out and I don't want to stop them. I am going to make my house gluten free though, as I believe that my 14 yo DS has celiac too and we are remodeling our kitchen soon, so it will be out with anything that has ever possibly had gluten on it.

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SunnyDyRain Enthusiast
SunnyDyRain
Posted

In my measly six monthes on the diet, I have come to the conclusion, to have a life is to be glutened

occasionally. I am not a person who eats every meal at home, I'm not a person who deprives my boyfriend of gluten because I'm scared he might kiss me or that his sandwich he made for lunch might have a torrid affair with my rice in the fridge overnight (that's a inside joke.. long story). I eat out 2-3 times a week. I get sick 1-2 times a week. I have no clue if it casien or gluten doing this to me, but It is at a level I feel I can handle. I'm not getting the excessive tiredness, the brain fog the migranes the depression the heartburn that i used to. If I eat out, I get D when i get home. Give me 2 hours and i'm ok.

I'm not eating gluten on purpose. I'm just ordering gluten free items on menus, and getting glutened from cc or the damn restraunt. PERFECT example. I went out for mexican, ordered my usual... Del Mar Fatjitas. This one time, they put imitation crab meat in the mix with the scallops and shrimp. I was pissed... but I just ate around it. I'm not one to make a fuss. I know If i want to feel 100% I need to cut out gluten 100% but i'm happy being 95% gluten free and running at 95%.

That is just my take on it. I know many people will disagree, but I'm not one to cook my own meals and really not to sacrfice my social life. I know myself too well to know that If I don't make these choices, I will find myself very depressed with no friends and no real reason to live. For me it's a balancing act. I can't let my life revolve around Celiac. I live my life and celiac tags along. I'd rather die at 50 with friends and lived a happy life, than at 70 alone and lonely.

Just my take... not suggested for others.

tom Contributor
tom
Posted
I eat out 2-3 times a week. I get sick 1-2 times a week. I have no clue if it casien or gluten doing this to me, but It is at a level I feel I can handle. . . . .

. . . . I know If i want to feel 100% I need to cut out gluten 100% but i'm happy being 95% gluten free and running at 95%.

I think you're quite lucky if it really works that way, w/ a linear ratio.

I'm too too sure that if I were 95% gluten-free, I'd be back to 10% function or worse.

The fact is, at 100% gluten-free and 100% free of many other foods, I'm so incredibly freaking happy EVERY day, it's beyond anything I ever could imagine; beyond what I thought would ever be possible for me.

My brain works better than ever and at the rate it's going, in a couple more months I'll be better physically than I've been in 15 yrs. :)

That is just my take on it. I know many people will disagree, but I'm not one to cook my own meals and really not to sacrfice my social life. I know myself too well to know that If I don't make these choices, I will find myself very depressed with no friends and no real reason to live. For me it's a balancing act. I can't let my life revolve around Celiac. I live my life and celiac tags along. I'd rather die at 50 with friends and lived a happy life, than at 70 alone and lonely.

Just my take... not suggested for others.

I've only been well since June, and have been having a pretty darn active social life since then, while easily remaining 100% gluten-free.

4 flights, 1 daytrip by car, 2.5 days of a Jazz Festival last month, 3 days of an Arts & Music Festival this month, reconnecting w/ a dozen old dear friends.

I've even gotten 2 job offers already w/out looking, and 3 offers to join bands.

Being 100% gluten-free is not a social death penalty!!

The choices are NOT "die at 50 w/ friends" or at 70 w/ none!!

I WILL go to weddings etc - if I can't clear a menu in advance I'll bring something.

I won't care a bit which way it goes. And w/ the way my brain is whirring, I'll even ad-lib a great toast! And dance as much as possible. If there's a live band, it's likely I'll have my sax (by request) and be up onstage for a number or 2. ;)

*THIS* is what 100% gluten-free does for me. :)

Sunny, if this alleged "95%" is really good enough, you should change your signature.

"Life is a lemon" and wanting your money back is no way to live.

kevieb Newbie
kevieb
Posted

if your friend ate a gluten sandwich and then came over to your house and touched your fridge handle and you touched it later and got glutened----what are the chances that she is going to walk around with crumbs clinging to her hands that won't get knocked off during a walk or a drive to your house---not to mention the fact that she has to touch door knobs and probably just brush her hands against any number of things before she got to your fridge handle. this just seems to be giving gluten some sort if "sci-fi-sh" life of it's own that allows it to spread uncontrollably. this just seems so unrealistic. i know, stranger things have happened and people will come on after me and say it happened to them......

NoGluGirl Contributor
NoGluGirl
Posted

Dear Jesse E,

It is possible to be 100 percent, especially if you live by yourself. I wish I could. I get violently ill from a microscopic amount of the crap! I have no choice but to just be paranoid because I have to share a kitchen. If I were able to move out on my own right now, that would make a huge difference.

Dear SunnyDyRain,

A sandwich having a torrid affair with rice! :lol::P That is hilarious! Fruit and bulgar doing the tango! :o Oh, the horrors of lust in food! What is next? Will they start breeding? The true attack of the killer tomatoes?

I must say I agree with tom that you can have a good social life and be totally gluten-free. There is no point in having friends if you are too sick to ever see them. I have a lot of friends that my illness has made impossible to ever see. Plus, if you are Celiac, no matter how small the amount of gluten you consume is, you are still damaging your intestines, and cannot heal. You owe it to yourself to save your own life. Consuming gluten is a slow and painful suicide.

Sincerely,

NoGluGirl

sfm Apprentice
sfm
Posted
So I've been eating relatively gluten-free for a while now, but ignoring the cross-contamination issues. But I do seem to be very sensitive to microscopic amounts of gluten getting into my food, so I've gotten sick from eating out a lot. So I was thinking about trying to go 100% gluten-free, but is this really possible and does it really work?

I think this is an important question because gluten molecules could theoretically get into just about anything and be anywhere these days. For example, a friend who just ate a wheat-bread sandwich could come over to my apartment, touch my refrigerator door handle and get gluten on it. Later I could touch the same handle, pick up a piece of celery with my hand and eat it and gluten myself.

Or in the grocery store, someone who recently ate an oatmeal cookie with their hands could pick up an apple, put it back down, and later I could buy that same apple and eat it and get glutened.

So I was wondering if anybody here who is extremely sensitive to even microscopic amounts of gluten has had success going 100% gluten-free.

What's the longest you've ever been able to go 100% gluten-free?

How often do you get glutened?

All I can say is I have gotten better at it with time. It might seem like a pain, but I wash my hands, the counter, handles, etc. frequently, to avoid the very things you mention. Never touch vegetables or fruit without thoroughly rinsing them. My children (not gluten free) wash their hands, clear plates, etc., so I can avoid touching gluten when possible. I carry wipes in my purse to clean my hands when I can't wash them thoroughly.

So how often do I get glutened? When I first went gluten free, at least once every few days. After a few months, probably 2 to 3 times a month. More recently, I can say with some confidence that I haven't been glutened more than once in the last 2 months. Not bad, all things considered - and I have a violent reaction to the smallest amounts of gluten - so I usually know within 20 minutes to one hour.

Sheryll

sfm Apprentice
sfm
Posted
if your friend ate a gluten sandwich and then came over to your house and touched your fridge handle and you touched it later and got glutened----what are the chances that she is going to walk around with crumbs clinging to her hands that won't get knocked off during a walk or a drive to your house---not to mention the fact that she has to touch door knobs and probably just brush her hands against any number of things before she got to your fridge handle. this just seems to be giving gluten some sort if "sci-fi-sh" life of it's own that allows it to spread uncontrollably. this just seems so unrealistic. i know, stranger things have happened and people will come on after me and say it happened to them......

I just want to insert my "sci-fi-ish" story, FYI - I know how far fetched this is:

My friend and I took our children for pizza - obviously, I didn't have any. However, I did help serve the pizza to the kids. Since we were out, and I wasn't eating right away, I neglected to wash my hands. We went home a short while later, at which time I (starving) took a couple of slices of pepperoni and some carrots out of the fridge to munch on. After a few bites, I thought, Duh, I never washed my hands - oh, well, it's been awhile, I'm sure it'll be fine.

20 minutes later my daughter walked in on me throwing up everything I ate - because along with what little I ate, I threw in some flour from the bottom of the pizza slices.

My children serve their own pizza now - it was a real eye opener for them.

Crazy but true.

Sheryll

kevieb Newbie
kevieb
Posted

actually, sheryll, your story doesn't sound too "weird". flour is so fine that i can see how that would stick too your hands alot more than crumbs would. you could feel crumbs between your fingers---but you wouldn't necessarily feel flour between your fingers.

NoGluGirl Contributor
NoGluGirl
Posted

Dear Sheryll,

I have been glutened by the darndest things, too. I have to share a kitchen. That complicates things a lot for me. Once the other month, I got glutened from the diet soda. It is safe, but my father never pays attention, and lays the lid down anywhere. My parents eat gluten and tend to be very careless, and so the counter and so many other things have crumbs from crackers, toast, etc. all over it. Now, I only drink some soda if it is a bottle I open, or designate my own bottle if we have more than one.

Sincerely,

NoGluGirl

tom Contributor
tom
Posted
Plus, if you are Celiac, no matter how small the amount of gluten you consume is, you are still damaging your intestines, and cannot heal. You owe it to yourself to save your own life. Consuming gluten is a slow and painful suicide.

I meant to also include something like this. My own experience of not taking celiac seriously enough, while actually being >95% gluten-free, led to my literally losing not only years of my life but also net assets in the range of . ... .ugh I can't write it. Let's just say a LOT of $$.

NoGluGirl Contributor
NoGluGirl
Posted

Dear tom,

It is amazing how such a small thing can bring such great pain. :( If only it was simpler. I am glad I decided to go 100 percent in the beginning. Of course, I felt so much better after a few days, that made me never to want a speck of the stuff.

You have to live and learn. Once you know better, you do better! :)

Sincerely,

Jin

cruelshoes Enthusiast
cruelshoes
Posted
Of course, I felt so much better after a few days, that made me never to want a speck of the stuff.

Me too. I am almost glad I was so close to dying when I was first diagnosed. It really gives me incentive to be true to the diet. I never want to go back to getting fed through an IV again!

NoGluGirl Contributor
NoGluGirl
Posted

Dear cruelshoes,

I know what you mean. Gluten is evil! :angry: The story of creation goes "God invented wheat, barley, oats and rye, and it was good. But then the Devil created Celiac." :P That is my version of it anyway. Gluten is dangerous, and I got to a similar point. It was terrifying, where my body was trying to shut down. I never want to be like that again.

Sincerely,

NoGluGirl

Jesse E Rookie
Jesse E
Posted
  • Author

Thanks everyone, these are great replies!

I am definitely going to try to go 100% gluten-free now. The social isolation is going to be the hardest part for me and honestly I don't know how tom and others do it, but I will find a way to socialize and not eat gluten at the same time :) .

JNBunnie1 Community Regular
JNBunnie1
Posted
Thanks everyone, these are great replies!

I am definitely going to try to go 100% gluten-free now. The social isolation is going to be the hardest part for me and honestly I don't know how tom and others do it, but I will find a way to socialize and not eat gluten at the same time :) .

Jesse- salads and no-bun burger patties! Just tell them the salad can't have ever had croutons on it and has to be made in a fresh bowl, and check if their grill gets buns toasted on it, though that's rare. Celiac does not mean no friends. Movies, laser tag, hiking, bowling, plays, concerts, clubs, go-karts, mini-golf, and picnics are all naturally gluten-free! Just eat before you go or bring food, and wash your hands before you leave.

NoGluGirl Contributor
NoGluGirl
Posted

Dear Jesse,

It is possible! You can be gluten-free, and have a lot of friends! :o I have plenty of friends. There are ways to be social and be a Celiac. There are times when you feel left out, but compared to being sick, not being able to eat a piece of cake is not so bad.

Sincerely,

NoGluGirl

P.S. I am working on recipes for gluten-free entertaining, where no one will notice the gluten is gone! An example is 7-Layer Taco Dip.

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