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

Just One Bite

Nyxie63

By Nyxie63
in Coping with Celiac Disease

Recommended Posts

Nyxie63 Apprentice
Nyxie63
Posted

You know how if sometimes you have an owie, you just have to poke it from time to time to see if it still hurts? Well, that's what its like right now.

I'm self dx'd due to my reaction to the wheat challenge a little over a week ago . Other than that, I've been gluten-free for a month. There's a part of me that really doesn't want to accept this and thinks "just one bite couldn't hurt". Sometimes its almost overwhelming. Its like I want to poke the owie to see if it still hurts. Logic tells me it'll still hurt, but I still want to poke it. Does that make any sense?

Now before you yell at me... No, I'm not going to do this. There's no way I want a repeat of the wheat challenge reaction.

But the urge is there.

Did anyone else go through this? Feeling the need to test yourself just one more time more before fully accepting the reality of this new dx?

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

Celiac.com Sponsor (A8-M):


hathor Contributor
hathor
Posted

I frequently feel that way, particularly when I'm feeling well. Unfortunately, I have been accidentally glutened enough times ... and seen the result ... so my better judgement comes into play.

I did try to test casein recently. Although Enterolab says it is a permanent intolerance, I read here about someone who reached the point after some months of being able to tolerate it. I didn't eat much, just a trace in something I ordered at a restaurant.

Ah, stupidity. I won't be doing that again :(

I also tested soy the same way. Same result.

Ridgewalker Contributor
Ridgewalker
Posted
You know how if sometimes you have an owie, you just have to poke it from time to time to see if it still hurts? Well, that's what its like right now.

I'm self dx'd due to my reaction to the wheat challenge a little over a week ago . Other than that, I've been gluten-free for a month. There's a part of me that really doesn't want to accept this and thinks "just one bite couldn't hurt". Sometimes its almost overwhelming. Its like I want to poke the owie to see if it still hurts. Logic tells me it'll still hurt, but I still want to poke it. Does that make any sense?

Now before you yell at me... No, I'm not going to do this. There's no way I want a repeat of the wheat challenge reaction.

But the urge is there.

Did anyone else go through this? Feeling the need to test yourself just one more time more before fully accepting the reality of this new dx?

YES!!!! Omg, I completely agree, this is one drawback of being self dx'd (I am too.) I've been gluten-free for a few months now, and while I haven't really had any gluten withdrawal symptoms... I constantly am having to restrain myself from re-checking, and re-testing myself. I'm so used to thinking my symptoms are psychological!

I've gotten accidentally glutened a couple times, and that seriously should have been enough to get it through my head. Never the less, I have poked the owie a couple times... :angry: and it hurts worse every time I do it.

JNBunnie1 Community Regular
JNBunnie1
Posted
I've gotten accidentally glutened a couple times, and that seriously should have been enough to get it through my head. Never the less, I have poked the owie a couple times... :angry: and it hurts worse every time I do it.

HAHAHAHAHAHA!!!!!! We don't have small children, really..............

It's ok, me and my boyfriend say potty and we don't even have kids.

Nyxie63 Apprentice
Nyxie63
Posted
  • Author

Thank you!

Its nice to know I'm not the only one who feels the need to poke the owie. :D

-------------------

LOL JNB! Hubby and I don't have kids either but we use terms like potty and owie too. Then again, we both still love crayons and coloring books and playing with bubbles too!

Thank goodness maturity is optional. ;)

blueeyedmanda Community Regular
blueeyedmanda
Posted

It is a very common feeling. I admit that I get that feeling still very frequently, if we are at the County Fair and you smell funnel cakes or you are walking through the mall and smell Auntie Ann's.

I always try my hardest to tell myself, remember what you went through and how far you have came.

JNBunnie1 Community Regular
JNBunnie1
Posted
Thank you!

Its nice to know I'm not the only one who feels the need to poke the owie. :D

-------------------

LOL JNB! Hubby and I don't have kids either but we use terms like potty and owie too. Then again, we both still love crayons and coloring books and playing with bubbles too!

Thank goodness maturity is optional. ;)

I know! we still play Uno and paint with watercolors, whenever my boyfriend plays with his legos (we're 23, by the way) I sing the Toys'r'us theme at him.

I do that 'poke the owie' thing too, but have not ever felt tempted with gluten. I'm self diagnosed too, but a glutening takes too much away from me. I think you may find that this feeling fades with time. Try to keep some Whole Foods cookies (gluten-free Bakehouse choc chip are UNBELIEVABLE, my uncle fights me for em) and something crunchy around to fight the urge!

Oh, I wanted to mention, don't go too crazy with the low-cal mentality for a few months. You need those calories to repair your body, you need the nutrients. Like we were talking about though, try to get them from raw dairy and goods veggie fats and organic meats. You're right about the bread, it won't really provide any nutrients.

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

Celiac.com Sponsor (A8-M):


Nyxie63 Apprentice
Nyxie63
Posted
  • Author

Manda,

I guess its not so much a matter of wanting a forbidden food as much as wondering if I'm really GI or not and wanting to test it (again) for my own satisfaction. My dx was made by a single measly challenge with cream of wheat. My dr has taken my word regarding the reaction and has no interest in pursuing testing as confirmation. I should be thankful for that, but a huge question mark still hangs over my head like a little black cloud. A couple of accidental glutenings will probably help to clear all that up.

------------------------

JNB,

LOL! Hubby and I are in our 40s and still do that! Like I said, thank goodness maturity is optional. ;)

I've recently discovered Pamela's Pecan Sandies. Oooooh! A little greasy for my taste, but ITS A COOKIE!!!! :P Those things are dangerous.

I guess I worry more than I should about the calorie content of food. I've lost quite a bit of weight (started at 185 and am now down to 167) and don't want to go back up again. In spite of the occasional commercially-processed gluten-free goodie, I'm still sticking with a good basic diet. The great news is that I haven't had to take the Omeprazole (for reflux) in almost 2 weeks! The combination of the gluten-free diet, digestive enzymes, and probiotics must be working. And no stomach cramps since switching over to white rice. Yay! And thank you! :)

JNBunnie1 Community Regular
JNBunnie1
Posted

Your body probably had the starvation: save everything! reaction. Some people, when not absorbing nutrients, will save every calorie, valuable or not. Some people will lose all their weight, the stereotypical celiac (me). Even though you're getting more calories, you're getting the nutrients you need now, so your body won't hold on to all those unnecessary calories now.

I still think you should wait a while longer and have a bit of barley soup or something. Just to see if it's Celiac or wheat. Although that was quite humorous, that a couple of accidental glutenings should clear things right up for you!

Nyxie63 Apprentice
Nyxie63
Posted
  • Author
I still think you should wait a while longer and have a bit of barley soup or something. Just to see if it's Celiac or wheat. Although that was quite humorous, that a couple of accidental glutenings should clear things right up for you!

Yeah, I think you're right. To be honest, I'd rather be wheat-intolerant than gluten-intolerant. At least that way I wouldn't be quite so limited. I'm also hoping once the deficiencies and dysbiosis are cleared up, my reaction won't be quite as severe either. I really don't want to have to carry around an epi pen the rest of my life. <_<

confusedks Enthusiast
confusedks
Posted

I jsut wanted to say. There is someone on this board who had a Gluten Intolerance (NOT celiac) and it was a product of another health problem. Now that she has "fixed" the other problem, she is able to eat gluten. She told me that it is NOT as good as she remembers...at all!

I thought this might help. Personally, I think I get more bummed about the other intolerances than I do gluten. I also think most of the time we miss the convenience of eating gluten. Before we could go anywhere and not bring food, now we have to bring food wherever we go or call ahead, etc.

Hang in there! It is totally normal to feel what you are feeling.

Kassandra

babygirl1234 Rookie
babygirl1234
Posted

if i have anything with gutlen in it im done for because i feel like i want to tose mt cookies after that, so i try to stay away from anything with gulten in it. But its hard sometimes you do it with reallizeing it

dandelionmom Enthusiast
dandelionmom
Posted

I've been tempted but I think that if I actually tried to eat gluten I wouldn't be able to actually go through with it.

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. ShariW
      - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

      In addition to gastrointestinal symptoms like diarrhea, I had gastroesophageal reflux that was becoming intolerable despite treatment with PPIs and antacids. When I went gluten-free, the GERD lessened tremendously (as did the other symptoms).
    2. klmgarland
      - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      Thank you so very much Scott. Just having someone understand my situation is so very helpful. If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    3. Scott Adams
      - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to ...
    4. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating...
    5. Scott Adams
      - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748
    ebrown
    Newest Member
    ebrown
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • klmgarland
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      My only proof

      By Scott Adams · Posted

      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      I think I am gluten intolerant

      By Scott Adams · Posted

      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.