Dont Understand How A Tiny Bit Of Gluten Could Be So Bad...

[i-miss-cookie-dough]

hi there!

i was diagnosed with celiac (blood test & endoscopy) 2 weeks ago.

symptoms were fatigue, nausea - (these symptoms have been going on for

4 or 5 years but thought it was from the medication i take for depression

and that i would just feel like that for the rest of my life! crazy, eh???)

anyhooo...then i was getting bad stomach aches -- these

just recently increased to daily, so i went to the dr. and a month later,

here i am - 2 weeks gluten free.

still feel horrible but i am told to give it time : )

my issue is...i am having a hard time grasping the idea that

after eating gluten my WHOLE life, now -

even a little crumb is dangerous to my health.

i was reading last night how i should get new

spoons and baking appliances and how

i need to question everything at a restaurant

and how i shouldn't eat cheese that have been touched

by crackers and and how i shouldn't share

a jar of almond butter

b/c crumbs may contaminate it.

i just can't grasp how such a TINY bit could all of a sudden

be harmful to me, you know?

HELP me grasp this?

anyone? : )

[jenngolightly]

hi there!

my issue is...i am having a hard time grasping the idea that

after eating gluten my WHOLE life, now -

even a little crumb is dangerous to my health.

i was reading last night how i should get new

spoons and baking appliances and how

i need to question everything at a restaurant

and how i shouldn't eat cheese that have been touched

by crackers and and how i shouldn't share

a jar of almond butter

b/c crumbs may contaminate it.

HELP me grasp this?

anyone? : )

I've been on the diet for 4 weeks ... It's really hard.

I love your name. Last Tuesday I was feeling particularly down. I told my husband, "You know what I miss most? Eating raw chocolate chip cookie dough." It was my comfort food. And I started crying.

Then, on Wednesday, dh took me to dinner at our local gluten-free cafe. They sell bakery items and pre-packaged food. I decided to get something for lunch the next day and looked in their freezer and OH MY GOD they had COOKIE DOUGH! It looked just like nestle's refrigerated dough. I was stunned and made my husband buy me a tub.

I ate 4 cookies last night - 2 raw, and 2 cooked. They were lovely!

The moral of this story is that the diet is hard, but you'll find that it isn't a death sentence. Although I'm only 2 weeks farther into it than you, I've been searching hi and lo to find things that are similar to what I used to eat. I know that people say that in the beginning you should stick to meat, veggies, and fruit, but that stuff doesn't appeal to me. I'm a junk-food lover and I can't stand to give up cookies, potato chips, and bread. I've found pizza, frozen dinners, pasta, bread, candy, chips and dip, caramel-corn, popcorn, cinnamon rolls, donuts, and cereal so far. We've eaten nachos, tacos, beef stroganoff, fried chicken, my version of hamburger helper, spaghetti, pizza, hot-wings, chicken (and more chicken), hamburgers, tuna-melts, etc. It's getting easier.

Also, I bought new pans and spoons. We didn't have good quality pots because we used to eat out all the time. I don't trust restaurants now - I ate out a few times in the beginning and got glutened. I felt so bad that I'm freaked out now and only eat at home or at the gluten-free cafe. So I invested in new kitchenware, a lot of new food, and cookbooks. It was expensive and we had to cancel a vacation that we had planned. :-(

Good luck.

[tarnalberry]

why now?

well, you can't know that it's *now*. you know that now you're experiencing symptoms, but damage to your intestines may have been occurring for anything length of time.

why not always?

because celiac is a genetic condition that appears to often require a trigger to activate the expression of the genes that produce the autoimmune antibodies that attack the intestines.

why just a crumb?

because it's chemistry. it only takes a molecule to start the chemical cascade in your immune system. now, one solitary molecule is going to start a very small cascade, but it doesn't take many molecules to make for a significant cascade that will case damage, and molecules are very small things. that's why we have to avoid every contamination that we can, because we'll pick up little tiny amounts of molecules that we don't know to (or know how to) avoid.

[JNBunnie1]

Cookie dough, if this helps at all, look at it this way. Every tiny little speck of gluten you've ingested your entire life already HAS damaged you, just as much as the stuff on the cheese you were talking about. Think of your intestines as a barren wasteland of broken machinery and haggard workers that's barely functioning to keep you alive, but once you've been gluten free long enough to heal, there will be a field of happy workers and shiny machinery running smoothly. Then, you eat a cracker! Alarms go off, machines crash smoking to the ground, and people start choking on the smoke. Now, things may not be any worse than they were before, but now you know what it feels like to be better. Does that help?

[Nancym]

Gluten in tiny little amounts that seem insignificant to your eyeballs, aren't insignificant to your intestines. It starts off a chain of autoimmune reactions that the effects of which can be detected in antibodies for up to 2 years after you last ingested it by fecal tests. Those antibodies can go just about anywhere in your body, your liver, your brain, your skin, your thyroid and cause additional autoimmune problems or all kinds of other issues. So you should do everything you can to prevent that damage from occurring.

It is pretty hard to heal up at first so I think coming to terms with it and becoming over-conscious of things is probably wise.

You could even use this experience to explore new, healthier ways of eating.

[mftnchn]

Welcome to the board! We have all been where you are, your reactions are totally normal. It just takes time.

I think it is good to just do a step at a time. Start by eating simple foods that are naturally gluten free (pot roast with potatos and carrots??), while you go through your kitchen. Sort your kitchen and read all the labels, checking here for how to look for hidden gluten items. You might even do three sections, has gluten, no gluten, and don't know for sure. Then decide not gluten areas for your kitchen if your other family members will continue to eat gluten.

Then have a place for your own peanut butter, etc., because yes, you need to avoid cross contamination. How sensitive you will be about crumbs of gluten will only become apparent to you later. Maybe you will handle minute exposures--some do. Many though become highly sensitive and learn by experience to avoid any CC. When you have had crumbs from your peanut butter jar and are sick for 2 weeks, it is an effective teacher!

With pots and pans, just carefully take stock: teflon that is scratched--you just can't clean all the crevices to make sure it is gluten-free. Replace what you need to, or just avoid using it for now. Toaster: some use toaster bags and don't change toaster. Otherwise by your own since you can't clean it.

Take care of yourself along the way, this is a big change and you will feel a big loss too for awhile.

Then start learning the ropes for buying and cooking replacements for what you miss, and give yourself time to learn and experiment. There are lots of options. I am six months into the diet and have found replacements I can make and that I like for almost everything. And I am gluten, milk, and soy free! Also I live in an area where no prepared gluten-free foods are available at all.

Check your medications for gluten, this might mean a call to the pharmacy or company.

Monitor your physical progress. If you still have symptoms, then the next step is to check your personal care products. I'd do toothpaste for sure. A number feel better if all of it is eliminated.

Good luck and hang in there!

[i-miss-cookie-dough]

wowzers!

you guys are GREAT!

i have never used

a forum b/4 but its fab!

its just like one big

support system.

and i never even THOUGHT

about toasters!

woah. that's nuts.

and loved everyone's analogies.

and loved that someone referred

to me as "cookie dough".

thats awesome...

thanks again!

[DingoGirl]

Welcome, Cookie Dough......and BTW I love the way you write! (sort of e.e. cummings)

Cookie dough, if this helps at all, look at it this way. Every tiny little speck of gluten you've ingested your entire life already HAS damaged you, just as much as the stuff on the cheese you were talking about. Think of your intestines as a barren wasteland of broken machinery and haggard workers that's barely functioning to keep you alive, but once you've been gluten free long enough to heal, there will be a field of happy workers and shiny machinery running smoothly. Then, you eat a cracker! Alarms go off, machines crash smoking to the ground, and people start choking on the smoke. Now, things may not be any worse than they were before, but now you know what it feels like to be better. Does that help?

OMG.....that was.....so...poetic! And in my entire (nearly) two years on this forum, I've never seen it put that way!

Brah-vo!!!

[loco-ladi]

I so well recall my first accidental glutening, I was so proud of myself I had been doing so well for so long and was feeling so totally awesome then one day the big bad gluten monster had a surprise for me and boy howdy did I see, feel and hear him coming!

It was a week before i got out of the bathroom! and another week before the brain fog wore off and I got back to the new me again.....

Go on and ask what got me! I dare ya........ no it wasnt a bread crumb...... I used one of those little bottles of spices on my chicken one night for supper and then remembered weeks afterwards that it was in my husbands stash because I wasn't sure if there was gluten or not, answered the question good for me, now I KNOW it had gluten in it!

always train the hubby to keep his nasty stuff in his own cupboard and no more co-mingling!

[oceangirl]

Welcome, Cookie dough Girl!

I am one of those "sensitive" ones- learned the hard way- and I remember feeling like you re: How could one crumb possibly be a problem?" It does get easier. My family chose to go "gluten-free' with me about a year ago because I kept getting CC'd. That way I at least know my house is fairly safe.

Good luck to you.

Oh, and, I agree, the factory analogy was brilliant!

lisa

[kevsmom]

Welcome to the board! I encourage you to keep reading and keep asking questions. Without this board, I would have been totally lost when I was first diagnosed. Even now, I still have questions, and someone is always willing to help.

Another thing I want to bring up is that if you are going to eat gluten free pasta (Tinkyada is wonderful), you should get a new colander. The tiny little holes in your old one is filled with gluten that just won't come out.

When I feed my dog, I always make sure that I wash my hands afterwards.

Some people might think that I am going a little overboard, but when I take my lunch or a drink out of the fridge at work, I also wash my hands. I thought that if someone buttered some toast and then put the butter back in the fridge, their fingers full of crumbs would be touching the door handle.

I hope I didn't overwhelm you with my thoughts. I know it's a lot of information to try to grasp.

Cindy

[JNBunnie1]

Welcome to the board! I encourage you to keep reading and keep asking questions. Without this board, I would have been totally lost when I was first diagnosed. Even now, I still have questions, and someone is always willing to help.

Another thing I want to bring up is that if you are going to eat gluten free pasta (Tinkyada is wonderful), you should get a new colander. The tiny little holes in your old one is filled with gluten that just won't come out.

When I feed my dog, I always make sure that I wash my hands afterwards.

Some people might think that I am going a little overboard, but when I take my lunch or a drink out of the fridge at work, I also wash my hands. I thought that if someone buttered some toast and then put the butter back in the fridge, their fingers full of crumbs would be touching the door handle.

I hope I didn't overwhelm you with my thoughts. I know it's a lot of information to try to grasp.

Cindy

Cindy, I don't think you're going overboard. I even saw someone bring up the idea that a person in a grocery stoe could pick up a muffin and then touch the apples, you eat the apple, you're screwed. I think there is no way we could possibly be too careful.

[JNBunnie1]

Oh, and, I agree, the factory analogy was brilliant!

lisa

<----- Hey, check me out, I'm brilliant! Wooooo!

[bakingbarb]

hi there!

i was diagnosed with celiac (blood test & endoscopy) 2 weeks ago.

symptoms were fatigue, nausea - (these symptoms have been going on for

4 or 5 years but thought it was from the medication i take for depression

and that i would just feel like that for the rest of my life! crazy, eh???)

anyhooo...then i was getting bad stomach aches -- these

just recently increased to daily, so i went to the dr. and a month later,

here i am - 2 weeks gluten free.

still feel horrible but i am told to give it time : )

my issue is...i am having a hard time grasping the idea that

after eating gluten my WHOLE life, now -

even a little crumb is dangerous to my health.

i was reading last night how i should get new

spoons and baking appliances and how

i need to question everything at a restaurant

and how i shouldn't eat cheese that have been touched

by crackers and and how i shouldn't share

a jar of almond butter

b/c crumbs may contaminate it.

i just can't grasp how such a TINY bit could all of a sudden

be harmful to me, you know?

HELP me grasp this?

anyone? : )

I just wanted to say that your symptoms and mine are very much alike. I went to the Dr and had every test but the one to find this. After a lot of research I tried the elmination diet and it was an amazing difference how I feel. (need insurance for the dr and right now I don't have that but soon)

I think this is my second week. All the questions you have I have been asking but because of how bad I hurt and felt before I didn't care what the answers were I just wanted to stay feeling better.

It is hard for people around you, the people in your life. This is all new to them and they have to change their lives also, they need understanding too.

It is getting easier for me though. The eating out part is the hardest. Oh and I eat a lot of potatoes and eggs lol

[MNBeth]

Some people might think that I am going a little overboard, but when I take my lunch or a drink out of the fridge at work, I also wash my hands. I thought that if someone buttered some toast and then put the butter back in the fridge, their fingers full of crumbs would be touching the door handle.

The lab is keeping my son and I in suspenders, waiting to learn whether we are going to have to go gluten-free. I'm almost certain we will, though, and that comment above is deee-pressing! I don't go to work - I'm thinking about my own kitchen! Looks like hubby and 3 sisters may have to join the gluten-free party when they're at home, 'cause I just don't know that I can wash my hands every time I open the fridge... or a drawer... or a cabinet... or... Yikes! There's even less chance they're going to remember to wash their hands every time they touch their gluteny food! Hmmm...

As always, lots of good things to think about here!

Beth

[Fiddle-Faddle]

Welcome, Cookie!

Loved the factory analogy!

The hardest part for me was getting through the first few weeks when all I wanted was gluten.

What got me through those 2 weeks was--Fritos and a big bag of Guittard chocolate chips!

Wheat I can live without, but not chocolate....

[Yellow Rose]

There was another post a few days ago that explained it this way. When you start healing you start absorbing. In the past it was mostly passing through you. Made since to me. Hang in there it does get better. I make all my food from scratch now as I am gluten, rice, and corn free and still eleminating.

Yellow Rose