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Crazy Newbie Questions

StephHappens

By StephHappens
in Coping with Celiac Disease

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StephHappens Rookie
StephHappens
Posted

1)How long is the longest you've gone without getting glutenated? I am just wondering. I have only been able to achieve five weeks. I've only been gluten free for seven weeks, though. I went one week gluten-free, then got glutenated, then began again.

2)When you accidentally eat gluten, do you feel like all the time you spent being careful was a waste of time? I have Celiac Disease and I felt like the week I spent successfully being gluten-free was a waste because I destroyed my intestines anyway after accidentally ingesting gluten. If I go five months gluten-free, then accidentally get gluten, don't I destroy my intestines and couldn't I have been eating gluten all along because I end up in the same place?

3)When you accidentally eat gluten, do you ever say "what the heck" and go eat a doughnut or something you miss? The damage has already been done, right?

Somebody help tell me why my thinking is faulty! Sorry, I am a newbie and trying to work all of this out in my head. My gastroenterologist told me I need to be, "gluten free or mostly gluten free" and I will be fine. Uh, MOSTLY gluten free? Think I need a new doctor?

Thanks for your help!

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mushroom Proficient
mushroom
Posted

When you do accidentally ingest some gluten it is just a little setback, not a catastrophe. Does it help? No, of course not! :P Does it set you back to square one? Absolutely not!! It's like walking to the store. You take ten steps and then you take one step backwards. Are you right back home? No, of course not, it's just that you will have to take that one step again, but you don't have to take the nine others which have already gotten you much closer to the store. Of course you can see that if you take lots of steps backwards it does slow down getting to the store, but eventually you will get there :)

But it will be a lot harder getting there if you have to rely on the assistance of a doctor who believes you should be "mostly" gluten free. :o

And no, I NEVER say "oh, to heck with it!" :unsure:

rosetapper23 Explorer
rosetapper23
Posted

In my opinion, the best way to go gluten free is to eat only fresh, natural food and to skip eating at restaurants for a while. I was able to stay completely gluten free for the first 18 months. Only then did I start eating gluten-free processed foods from time to time, go out to restaurants occasionally, and even risk a potluck party or two (which I almost always regretted afterwards). After being gluten free for so long, the only drawback was that I've become extremely sensitive to gluten to the point where the smallest glutening has caused some pretty disastrous symptoms (iron anemia that took years to resolve so that I had to receive iron intravenously during that time, stress fractures in my feet due to floppy tendons from mineral deficiencies, etc.). That may not happen to you, though.

I know what you mean about feeling cheated when you get accidentally glutened. I always think, "Darn, I could have had a real pizza or a croissant!" It's awful to get glutened by something stupid like paprika in potato salad or cross-contamination. However, I NEVER, EVER consider eating additional gluten once I've had an accidental glutening--the thought of getting even sicker always scares me.

BTW, yes, you might want to look for a new doctor--the one you has doesn't seem to understand celiac. For us, there is no "mostly gluten free." Good luck with the diet!

GFinDC Veteran
GFinDC
Posted

1)How long is the longest you've gone without getting glutenated? I am just wondering. I have only been able to achieve five weeks. I've only been gluten free for seven weeks, though. I went one week gluten-free, then got glutenated, then began again.

2)When you accidentally eat gluten, do you feel like all the time you spent being careful was a waste of time? I have Celiac Disease and I felt like the week I spent successfully being gluten-free was a waste because I destroyed my intestines anyway after accidentally ingesting gluten. If I go five months gluten-free, then accidentally get gluten, don't I destroy my intestines and couldn't I have been eating gluten all along because I end up in the same place?

3)When you accidentally eat gluten, do you ever say "what the heck" and go eat a doughnut or something you miss? The damage has already been done, right?

Somebody help tell me why my thinking is faulty! Sorry, I am a newbie and trying to work all of this out in my head. My gastroenterologist told me I need to be, "gluten free or mostly gluten free" and I will be fine. Uh, MOSTLY gluten free? Think I need a new doctor?

Thanks for your help!

I think your doctor should mostly not shoot himself in the noggin. Maybe just a little bit won't hurt him though right?

When you went gluten free you had probably been suffering damage to your instestines for quite a while, months or even years like some of us. You aren't going to go back to that level of damage from an isolated incident. But that doesn't mean you won't have some damage. So the less gluten you ingest the better. 0% is the goal we need to go for, not just a little here and there.

It is easy to make mistakes on the gluten-free diet at first, especially if you are still eating processed foods with lots of ingredients to sort through and understand. So the less processed food you eat at the beginning the better off you are because there is less "stuff" to sort through when trying to determine if something is safe to eat or not. After some time goes by you get more familiar with how your body reacts to different foods in general and you won't make as many mistakes. It's a learning process just like anything else. You can do it! :) Plus it gets easier over time. :D

glutenjunkie Apprentice
glutenjunkie
Posted

Does anyone else use activated charcoal or epsom salt baths for glutening detox?

Terri O Rookie
Terri O
Posted

Thanks for those great questions Stephappens! This is the exact way that I have been thinking too! It must be a Newbie thought process hey? The best part about it is that on here folks actually understand and can give us answers so that we can get better...even if we have taken a few steps back! The "going to the store" analogy was great wasnt it? Something so simple to put it all into perspective. We can do it! Terri O

StephHappens Rookie
StephHappens
Posted
  • Author

Mushroom, thanks for that great analogy! It made a lot of sense. Thanks to everyone who took time to give some input. I survived a weekend visit by in-laws and we ate out several times. Chili's (soup and salad - no croutons off the gluten free menu) have been very good. I am NOT going to eat those Jack in the Box tacos I keep dreaming about! :)

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lucky97 Explorer
lucky97
Posted

Being a "newbie" myself, I've had similar questions.

I think the top priority is, once one eliminates the obvious sources of gluten, is the hidden gluten and that takes practice. However nobody is perfect and mistakes will be made...I don't think I've made any myself yet but remaining really committed to staying gluten free will keep one on the healing path. It's not like dieting and "cheating" once in awhile is okay, because the health depends on it.

How long does it take for the intestines to heal up? I don't know but the doctor said they would. I think "damage" comes back when regular sources of gluten come back, not a food choice mistake that happens once or twice a year. BUT that once or twice a year is not a "cheat" mistake, more like "Oh, that was Hunt's ketchup and not Heinz" type of thing I would think. Just my opinion.

StephHappens Rookie
StephHappens
Posted
  • Author
BUT that once or twice a year is not a "cheat" mistake, more like "Oh, that was Hunt's ketchup and not Heinz" type of thing I would think. Just my opinion.

Does Hunt's ketchup have gluten???!!!!

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