Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Does Anyone Else Think About This?

Lexi

By Lexi
in Coping with Celiac Disease

Recommended Posts

Lexi Enthusiast
Lexi
Posted

I try extremely hard to eat gluten free, but as we all know, sometimes we accidentally get glutened. Everytime this happens, I think in my head that I might as well go and eat something I love (like a chick-fil-a sandwhich for example). What would be the harm if I already know I am going to be sick for a couple of days anyway??? However, I haven't had the guts to do it yet, but I think about it EveryTime!!!

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

Celiac.com Sponsor (A8-M):


K8ling Enthusiast
K8ling
Posted

I do too!!! In fact, last week I said

"I may as well eat something good, since I throw up all the time AND I'm glutened!!!"

Being pregnant has NOT helped me get rid of these thoughts LOL

kwylee Apprentice
kwylee
Posted

Not sure about everyone, but the degree to which I feel badly is commensurate with the amount of gluten ingested, so eating anything additional would only make a bad situation worse.

T.H. Community Regular
T.H.
Posted

Oh yeah, I've had those thoughts. I think they're the worst when you've been really careful and eaten food you didn't even LIKE and it made you sick. I always think: you know, I could have eaten much tastier food to feel this crappy. ;)

But I still stay away from the gluten, to date, because the more I get glutened (I've gotten cc'd a few days in a row, on vacations) the worse the symptoms get, and the longer it takes to get over them, for me.

Lexi Enthusiast
Lexi
Posted
  • Author

Oh yeah, I've had those thoughts. I think they're the worst when you've been really careful and eaten food you didn't even LIKE and it made you sick. I always think: you know, I could have eaten much tastier food to feel this crappy. ;)

But I still stay away from the gluten, to date, because the more I get glutened (I've gotten cc'd a few days in a row, on vacations) the worse the symptoms get, and the longer it takes to get over them, for me.

My thoughts, Exactly!!! But that's what I was wondering - Are your symptoms WAY worse by eating More gluten, or are they the same no matter how much gluten you eat?

Lexi Enthusiast
Lexi
Posted
  • Author

It just sucks that I can be sick for 2 days because a waiter accidentally put a crouton in my salad, when I could have at least had something Really Yummy!!! I guess I would rather be sick for 2 days than 2 weeks though!

Jenn624 Rookie
Jenn624
Posted

When I was first off gluten, I got a nasty stomach virus that was going around. Because I was already vomiting and having diarrhea, I went ahead and ate a cheeseburger. Why I have no idea. I am sure it didn't speed up the process of my getting better. Now, though, that it's been almost 3 months, and the smallest amount makes me sick, I don't want to be even sicker! So my answer is no...

:) Jenn

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

Celiac.com Sponsor (A8-M):


Loey Rising Star
Loey
Posted

I try extremely hard to eat gluten free, but as we all know, sometimes we accidentally get glutened. Everytime this happens, I think in my head that I might as well go and eat something I love (like a chick-fil-a sandwhich for example). What would be the harm if I already know I am going to be sick for a couple of days anyway??? However, I haven't had the guts to do it yet, but I think about it EveryTime!!!

Although we all understand why you think it would be all right to just eat one more thing PLEASE DON'T!!!!!! It can undo all of the good work you've done. Just hang in there and PM me if you need a one-on-one intervention. In the long run it's not worth it to take any more chances. It's our organs we're dealing with.

Sending positive energy.

Loey

healinginprogress Enthusiast
healinginprogress
Posted

Yes, I have those thoughts, too...but as others mentioned, I wouldn't want my symptoms to get WORSE or to last LONGER :(

detox Rookie
detox
Posted

Simply because any gluten makes me feel bad and any more makes me feel worse, I will go VERY far out of my way to do everything in my power to not ingest anything containing gluten. Even if i get grief from others around me. The thing is i'm the only one who has to deal with it at the end of the day.

I like to make a comparison to regular people drinking bleach. Sure you could have a small amount of bleach and they will get over it in a short amount of time but why would you want to consume something that messes you up even a bit.

Scott

lynnelise Apprentice
lynnelise
Posted

I will admit I have indeed had this very thought. I never act on it though. I think about long term damage and side effects. I guess it's like if you had a sunburn you wouldn't hop in the tanning bed because the damage is already done. It would just be worse. So yeah, I think but never act! It makes me soooo mad to get sick from something I didn't even enjoy though!

angel9165 Newbie
angel9165
Posted

UGH..been gluten-free for 6 months and I STILL want gluten and even more so when I've been inadvertently contaminated (oddly). I'm not that brave though...scares the crap out of me to think about how sick I might get.

Salax Contributor
Salax
Posted

Thought about it, but when I get glutened I have no desire to eat anything for the duration of sickness. So I guess that's a good thing, not really tempted. B)

love2travel Mentor
love2travel
Posted

I SO think about this! Because I have no reaction to gluten I feel tempted all the time because I do not feel ill from it. There's not much physical incentive and it is tricky and difficult. But I have never, ever cheated nor do I ever intend to. I picture the poor little villi in my small intestine all sick and flat and sort of gasping (I have an active imagination!). And I need to be a good example to my family members who I believe may have celiac disease or at least a gluten intolerance.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I thought that a few months ago after an accidental glutening (and subsequent depression). I gave in to the temptation and was very sorry. My formerly good-tasting gluten food didn't even taste good and the result was my immune system was so depressed I got sick with brochitus and then pnuemonia which landed me in the hospital. I lost another two months of my life being sick because of something that didn't even taste good anymore. SO NOT WORTH IT! DON'T DO IT! :ph34r:

IrishHeart Veteran
IrishHeart
Posted

Interesting question...

I look at gluten as poison....so an accidental small dosing of Gluten (like last week at the dentist's office) makes me a nauseous, sick, space-cadet head, full of anxiety, raging insomnia with a side of heartburn and diarrhea that burns from my mouth to my rectum ...plus stomach cramping and the burning neuropathy in my whole body is so intense I feel like I am on fire and my legs and arms are swollen like I am encased like a stuffed sausage that might explode...so much so that it actually hurts just to have clothes on and I can barely walk or lie down or sit without pain and I wonder if life is worth living...

.....so, let's see, if I feel like that, I might as well have a cinnamon roll too so, I can feel 10 times worse? :blink:

....umm..I'm gonna have to say.....nope!! :D:lol:

(although, some ice cream might tempt me....) ;)

Monklady123 Collaborator
Monklady123
Posted

I SO think about this! Because I have no reaction to gluten I feel tempted all the time because I do not feel ill from it. There's not much physical incentive and it is tricky and difficult. But I have never, ever cheated nor do I ever intend to. I picture the poor little villi in my small intestine all sick and flat and sort of gasping (I have an active imagination!). And I need to be a good example to my family members who I believe may have celiac disease or at least a gluten intolerance.

This is interesting to me because I know several people who are truly celiac/gluten intolerant (as opposed to the "fad" diet people) and everyone has some sort of physical reaction. I think this diet must be MUCH harder for those of you with no physical reactions!

For the OP -- I did think like this in the beginning. But now I don't because I know how awful I'll feel. I just hope that it'll pass quickly.

love2travel Mentor
love2travel
Posted

This is interesting to me because I know several people who are truly celiac/gluten intolerant (as opposed to the "fad" diet people) and everyone has some sort of physical reaction. I think this diet must be MUCH harder for those of you with no physical reactions!

For the OP -- I did think like this in the beginning. But now I don't because I know how awful I'll feel. I just hope that it'll pass quickly.

I am a silent celiac so have no symptoms that I know of yet! Sometimes it still surprises me to say I have celiac. Sure doesn't feel like I have anything! No anemia, no malabsorption issues. When I was on my three-month gluten challenge I was pigging out on the stuff and absolutely no symptoms. I did have several miscarriages, though, and now attribute that to celiac.

It is extremely tough - I feel as though I am being punished by having to do this when I don't get sick! And of course if I do get glutened by CC I would never know it. Or what if my vitamins or toothpaste contain gluten? (I've double-checked them but am just using that as an example.) It really sucks because I could so easily cheat and cheat often. I would never do that but it has crossed my mind. I must keep thinking that this is helping me in the long run (unless I am getting glutened without my knowing about it).

I do feel for those of you who get so ill. That must be horrible! I guess it can be a challenge regardless whether we are symptomatic or not. :(

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,974
    • Most Online (within 30 mins)
      7,748
    Tiffany P
    Newest Member
    Tiffany P
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cameo674
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By cameo674 · Posted

      The GI doc messaged me this afternoon that she believes that the new blood work added to the old is definitely  looking like a celiac diagnosis is in my future.  She wants to me to call into scheduling each Monday to see if I can get my August 29th appointment moved up due to cancellations.  I have never had a doctor recommend that.  She also said there were additional labs that she requested still out that have not come back yet; so, they may have been missed drawing those since the functional health doctor has a whole slew of labs that I am suppose to be waiting until August 27th to do. I am still waiting to hear on whether or not she will allow me to do pill prep versus the typical gatorade prep that I did 8 years ago for that colonoscopy.  I do not drink gatorade to begin with and that miralax prep kept me in the bathroom up until we drove to the procedure.  My younger brother said the pill form was fairly easy when the liquid form is hard to swallow. Colonoscopy prep is definitely close to number one on the list of things I never want to experience again if I could avoid it.  Number one is a different medication that caused severe cramping that had me in tears until it wore off.  Never having had an endoscopy, I have no idea of what that prep is like, but it cannot be worse right? I started munching on oyster crackers last night.  It is shocking how filling they are.  I just read that I need to pay attention to the protein content of the wheat bread product or I will miss the gluten goal of 10 g per day prior to testing.  The post said that I should look at the protein and multiple that number by .75 if it is a wheat flour product to see how much gluten is in it.  No more oyster crackers for me.  I would have to eat 10 oz bag everyday to meet my goal.  not going to happen.
    • Alibu
      Latent celiac, need to go gluten free, advice on kitchen "reset?"

      By Alibu · Posted

      Well, I've made if from the pre-diagnosis forum to here!  I've been diagnosed with "latent" or "potential" celiac and my doctor has suggested me to go gluten-free before my appointment with him in October (first available, LOL).  My ttg-iga was 152, my EMA was positive, I have the gene, but my biopsy was negative (and he took 12 samples), so it makes sense to go gluten free to see if I improve. I know the basics - I can find lists of things to avoid, I know about hidden dangers, etc. all of that.  Where I'm struggling is just STARTING.  I need to go shopping and stock up on some staples.  My goal is to not try to find gluten-free alternatives, but to focus on naturally gluten-free foods like proteins, veggies, fruits, and carbs like potatoes and rice.  However, the rest of the household will not be gluten-free, which is fine, I don't want them to for various reasons.  But I have SO much food in my house in the pantry and fridge and cabinets, and it feels like I need to get rid of a lot in order for me to start fresh, but at the same time, I can't get rid of everything. I guess it's just feeling overwhelming and I've never given up gluten before so this is going to be a huge shift for me and I feel like I need SPACE, but I can't quite have that. Any advice on just getting started and organizing myself would be great!  
    • Scott Adams
      Finally got in to doctor to get my referral and I lucked out and got into Gastro the same day - question about different transglutaminase results

      By Scott Adams · Posted

      It’s great that you were finally able to see a gastroenterologist—and even luckier to get in the same day as your referral! It sounds like your GI is taking a very thorough approach, which is reassuring given your complex symptoms and history. The confusion around your different tissue transglutaminase (tTG) antibody results is understandable. The variation between your December and June labs may be due to multiple factors, including differences in the lab performing the test (Quest vs. Mayo Clinic), the specific assay used, and the amount of gluten you had been consuming before each test. Antibody levels can drop significantly when gluten is reduced or eliminated from the diet, even partially, which might explain why your recent tTG IgA was now negative and your tTG IgG was borderline high. That’s likely why your GI mentioned it was “usually the reverse”—typically, tTG IgA is more commonly elevated in confirmed celiac, not IgG alone, especially when IgA levels are sufficient, as yours are. Your gene testing confirms that you carry HLA types (DQ2.2 most likely) that are permissive for celiac disease, meaning you can develop it, but not everyone with these genes will. These genes don’t explain why your symptoms are milder or different from others with celiac—many people have so-called "silent" or atypical presentations like yours, with issues like long-term heartburn, loose stools, nutrient intolerances, or just gradually adapting to symptoms over time. It’s not uncommon to assume these symptoms are just aging, medication side effects, or lifestyle-related until someone finally connects the dots. It’s a good thing your daughter advocated for you to be tested—many cases are missed for years because they don’t follow the “textbook” presentation. As for the immunoglobulin tests, your doctor likely ordered those to ensure your immune system is functioning normally, particularly your IgA level, since a deficiency can cause false-negative celiac blood tests. Since your IgA level is normal, your tTG IgA test should be reliable (assuming adequate gluten intake), but again, if you weren't eating enough gluten, that could explain the lower antibody levels now. The comprehensive metabolic panel and negative stool parasite results are additional pieces ruling out other causes of your symptoms, like infections or organ dysfunction. The upcoming endoscopy and colonoscopy should provide more definitive answers, especially with biopsies looking for celiac disease, eosinophilic esophagitis, and microscopic colitis. It’s completely valid to feel unsure about what you’re experiencing, especially when your symptoms have been lifelong or gradually worsening without being severe. You’re not alone—many adults with celiac or gluten-related disorders report subtle or chronic symptoms they’ve normalized. You’re doing the right thing by staying on gluten now through your procedure date in August. Try not to stress about reaching the full 6-slice equivalent each day, but do increase your gluten intake as much as tolerable (e.g., a couple of pieces of bread, pasta, crackers, etc.) to give the biopsy the best chance of detecting any damage. Good luck with your upcoming procedures—you’re closer than ever to answers and a clearer direction forward.
    • Scott Adams
      Gluten free thyroid medications

      By Scott Adams · Posted

      I don't believe that site is updated regularly, and it may be unreliable.  You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Hello! I did a brief search on this and couldn't find recent posts, but feel free to direct me to something if I missed it! I have had a difficult time confirming which thyroid medications (specifically generic forms of Levothyroxine) are gluten-free and safe for celiacs. I am pretty confident the generic manufacturer Mylan is safe, and I have been taking this for almost two years. Recently (I think b/c of a recall), Mylan has not been available at my local pharmacies. The list I typically use for gluten-free drugs (http://glutenfreedrugs.com/newlist.htm) does not list any of the other manufacturers offered by pharmacies in my area (Accord and Macleod). When I do a search, sites tend to say these brands are gluten-free but I can't fully confirm, and other sites say that only Lannett and Mylan generic brands are safely gluten free. I have called manufacturers and they say "there are no gluten ingredients" but they don't have information regarding manufacturing/cross contact. In particlar, Accord said there is gluten present in the manufacturing facilities so they can't guarantee no cross contact. What recommendations do you have for finding levothyroxine that I can mostly be assured is safe for celiacs? It is tricky b/c I found one I was confident in but now I can't seem to get that manufacturer at any pharmacy near me. I don't want to be unnecessarily overly concerned about this, but since it is a medicine I take daily, I want to be pretty certain it is safe (I have both celiac and gluten ataxia so I need to be very careful with any gluten intake and cross contact.)      
×
×
  • Create New...