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

Does Anyone Else Think About This?


Lexi

Recommended Posts

Lexi Enthusiast

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

  • 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. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

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

    • Total Members
      132,872
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.