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

By StephHappens
in Coping with Celiac Disease

Recommended Posts

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!

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

Celiac.com Sponsor (A8-M):


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! :)

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

Celiac.com Sponsor (A8-M):


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???!!!!

Archived

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

Go to topic listing

  • 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. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Gluten-Free Recipes & Cooking Tips
      1

      heaps of hope!

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to bui...
    2. Scott Adams
      - Scott Adams replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Fruits & Veggies

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate...
    3. Scott Adams
      - Scott Adams replied to yellowstone's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Cold/flu or gluten poisoning?

      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a h...
    4. Scott Adams
      - Scott Adams replied to hjayne19's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Celiac Screening

      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is...
    5. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Related Issues & Disorders
      2

      New issue

      Your experience of being medically dismissed for decades, despite a clear celiac diagnosis since 1994, is unacceptable. It is a tragic common thread in our community that the systemic failure to understand celiac disease leads to a cascade of other diagnoses—like SIBO, IBS, depression, and now the investigation of MS or meningioma—while the core autoimmune con...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,092
    • Most Online (within 30 mins)
      7,748
    LVanderbeck12
    Newest Member
    LVanderbeck12
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      heaps of hope!

      By Scott Adams · Posted

      Your post nails the practical reality of living well with a celiac diagnosis. The shift from feeling restricted to discovering a new world of cooking—whether through a supportive partner making gluten-free spanakopita and gravy, or learning to cook for yourself—is exactly how many people find their footing. It turns a medical necessity into a chance to build kitchen skills, eat more whole foods, and actually enjoy the process. Your point that the basics—knife skills, food safety, and experimenting with spices—are all you really need is solid, helpful advice. It’s a good reminder that the diagnosis, while a pain, doesn’t have to stop you from eating well or having fun with food.
    • Scott Adams
      Fruits & Veggies

      By Scott Adams · Posted

      You are experiencing a remarkable recovery by addressing core nutrient deficiencies, yet you've uncovered a deeper, lifelong intolerance to fruits and vegetables that appears to be a distinct issue from celiac disease. Your experience points strongly toward a separate condition, likely Oral Allergy Syndrome (OAS) or a non-IgE food intolerance, such as salicylate or histamine intolerance. The instant burning, heart palpitations, and anxiety you describe are classic systemic reactions to food chemicals, not typical celiac reactions. It makes perfect sense that your body rejected these foods from birth; the gagging was likely a neurological reflex to a perceived toxin. Now that your gut has healed, you're feeling the inflammatory response internally instead. The path forward involves targeted elimination: try cooking fruits and vegetables (which often breaks down the problematic proteins/chemicals), focus on low-histamine and low-salicylate options (e.g., peeled pears, zucchini), and consider working with an allergist or dietitian specializing in food chemical intolerances. 
    • Scott Adams
      Cold/flu or gluten poisoning?

      By Scott Adams · Posted

      Your satiation is challenging and a common dilemma for those with celiac disease or non-celiac gluten sensitivity: distinguishing between a routine viral illness and a reaction to gluten exposure. The overlap in symptoms—fatigue, malaise, body aches, and general inflammation—makes it nearly impossible to tell them apart in the moment, especially with a hypersensitive system. This ambiguity is a significant source of anxiety. The key differentiator often lies in the symptom pattern and accompanying signs: gluten reactions frequently include distinct digestive upset (bloating, diarrhea), neurological symptoms like "brain fog," or a specific rash (dermatitis herpetiformis), and they persist without the respiratory symptoms (runny nose, sore throat) typical of a cold. Tracking your symptoms meticulously after any exposure and during illnesses can help identify your personal patterns. Ultimately, your experience underscores the reality that for a sensitive body, any immune stressor—be it gluten or a virus—can trigger a severe and similar inflammatory cascade, making vigilant management of your diet all the more critical. Have you had a blood panel done for celiac disease? This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Celiac Screening

      By Scott Adams · Posted

      Your situation highlights a difficult but critical crossroads in celiac diagnosis. While your positive blood test (a high TTG-IgA of 66.6) and dramatic improvement on a gluten-free diet strongly point to celiac disease, the gastroenterologist is following the formal protocol which requires an endoscopy/biopsy for official confirmation. This confirmation is important for your lifelong medical record, can rule out other issues, and is often needed for family screening eligibility. The conflicting advice from your doctors creates understandable anxiety. The challenge, of course, is the "gluten challenge"—reintroducing gluten for 4-6 weeks to make the biopsy accurate. Since your symptoms resolved, this will likely make you feel unwell again. You must weigh the short-term hardship against the long-term certainty of a concrete diagnosis. A key discussion to have with your GI doctor is whether, given your clear serology and clinical response, would be getting a diagnosis without the biopsy.
    • Scott Adams
      New issue

      By Scott Adams · Posted

      Your experience of being medically dismissed for decades, despite a clear celiac diagnosis since 1994, is unacceptable. It is a tragic common thread in our community that the systemic failure to understand celiac disease leads to a cascade of other diagnoses—like SIBO, IBS, depression, and now the investigation of MS or meningioma—while the core autoimmune condition is neglected. The constant, severe flu-like symptoms and new neurological concerns are absolutely valid and warrant serious investigation for connections to celiac-related autoimmunity or complications like refractory disease. It is enraging that you must fight so hard to be heard. While I don't have a medical answer about MS or meningioma links, your instinct is correct: relentless symptoms require a specialist who understands celiac disease beyond the gut. Regarding the California proclamation, it is a symbolic advocacy effort; reaching out to the women mentioned may provide supportive community, but your advocacy with your local representative is the most direct action. 
×
×
  • 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.