Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Crazy Newbie Questions


StephHappens

Recommended Posts

StephHappens Rookie

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

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

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

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

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

Terri O Rookie

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

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! :)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



lucky97 Explorer

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
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???!!!!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Doctors
      9

      Second chance

    2. - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

    3. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

    4. - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      330

      Terrible Neurological Symptoms

    5. - Jmartes71 replied to Jmartes71's topic in Doctors
      9

      Second chance

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,671
    • Most Online (within 30 mins)
      7,748

    brad Mccarroll
    Newest Member
    brad Mccarroll
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jmartes71, Have you tried a naturopathic or holistic doctor?  Some posters in the past have commented theirs were more helpful than mainstream doctors.  
    • knitty kitty
      @HectorConvector,  Have you tried taking 500 mg of the Thiamine Mononitrate that you have left?   Thiamine Mononitrate may not be as helpful as other forms of thiamine, but since that's what you have on hand.    Thiamine is safe and nontoxic even at high doses needed to correct thiamine deficiency.   No harm in trying it. Neuroplastic changes in the brain may be caused by thiamine deficiency.   These changes can be seen in Wernicke's encephalopathy and Korsakoff's syndrome, Alzheimer's and Parkinson's. I googled "Neuroplastic Sensitization syndrome and thiamine pubmed" and see for yourself what it says.   Try taking 500 mg Thiamine Mononitrate and look for health changes.
    • HectorConvector
      This may seem non-relevant but I thought I'd add it here anyway to see what anyone thinks. Many might dismiss it but that's OK. I went through the entire history of this condition from its onset in 2010 or so, including the things that flare it up, and the timeline of what made it worse, the medications that worked and didn't, in ChatGPT (rolleyes I know lol)  and supplied it with all the clinical evidence I've had from tests etc.... After hours of "discussing" with it and finding research it "concluded" it's a chronic neuroplastic sensitization syndrome but of course said I should only get a proper diagnosis from a  doctor. When I saw the doctor on 9th February because this got worse he looked through all my medical history and the course of the "condition". I didn't tell him I'd used ChatGPT or mention what I thought it is because I still don't really know until I have a formal diagnosis. He came with the same conclusion as ChatGPT. Just thought it was an interesting co-incidence perhaps. As for myself, I'm not forming any conclusions til I can really know exactly what's happening and why and what stops it. Only then can I truly know.
    • HectorConvector
      So I've been eatin no carbs in the evening and only a bit for my lunch so a big reduction. Well, made no difference, in fact it's actually got even worse. So everything I do makes it get worse. I said this to the doctor. He said he definitely thinks it's a neuroplastic pain condition where I've sensitized my nerves to max volume and now the pain has outgrown the medication max dose even though there is nothing physically wrong with my body. A bit earlier I had violent shocking evil burning nerve pain that made me nearly pass out and want to die again, also noticed this seems to be associated with sudden water retention. I've made hardly any pee in nearly 12 hours and despite drinking loads. Mouth is super dry. I am getting the "correct" sort of this when I've finished the current ones, so not long now. Can only get it on the internet here. Then I can say how it might change anything.
    • Jmartes71
      Im not a doctor and my term isnt right.All I know is I had what ever lovely procedure I know I had it in down the throat and the bottom biopsy. Im tired of and not feeling well and my blood looks fabulous though STULL HLA-DQ2 Positive and past biopsy Positive. Dealing with this is literally insane im begging for help.im at the point where just what ever 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.