• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

"cheating"
0

18 posts in this topic

Has anyone ever done this in the early months of being gluten free? I've been gluten free for several months and I have no desire to eat gluten just for the sake of eating gluten, but sometimes I think it would be good to know what to be on the lookout for in the case of an accidental glutening. I've had various symptoms of varying degrees of severity for most of my life but I always thought tummy aches and such were normal for everyone on Earth. They were/are certainly normal for me. It's only been in the past few years that I've realized it's not normal for the need to have a BM to be signaled by tummy aches. I'm still having a lot of those symptoms these days, but my TTG has improved greatly, so by the numbers, I'm on the right track. It wasn't until a couple of months before my diagnosis that things started getting abnormal by my standards, so I wonder if I should be expecting those symptoms (which I don't have a lot of experience with) when glutened? Or am I being glutened still, because I'm still experiencing my normal stuff? Or should I be eliminating other things? Or is it something else altogether? Morbid curiosity?

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Has anyone ever done this in the early months of being gluten free? I've been gluten free for several months and I have no desire to eat gluten just for the sake of eating gluten, but sometimes I think it would be good to know what to be on the lookout for in the case of an accidental glutening. I've had various symptoms of varying degrees of severity for most of my life but I always thought tummy aches and such were normal for everyone on Earth. They were/are certainly normal for me. It's only been in the past few years that I've realized it's not normal for the need to have a BM to be signaled by tummy aches. I'm still having a lot of those symptoms these days, but my TTG has improved greatly, so by the numbers, I'm on the right track. It wasn't until a couple of months before my diagnosis that things started getting abnormal by my standards, so I wonder if I should be expecting those symptoms (which I don't have a lot of experience with) when glutened? Or am I being glutened still, because I'm still experiencing my normal stuff? Or should I be eliminating other things? Or is it something else altogether? Morbid curiosity?

If you've only been diagnosed a few months ago, most likely your gut is still healing. Thats the case for me. I've been gluten free since May and I still get stomach problems from time to time. You could be getting glutened from somewhere - I'd start with your kitchen surfaces and cookware, but it could be anything from toothpaste to shampoo to skin products.

There have been times where I have been so frustrated not knowing if I've been glutened or am just healing that I've blurted out "why dont I just eat a piece of bread?" I'll never do it. First off, I wouldn't knowingly poison myself and risk derailing my progress. Also, if you do that, who knows if you'll be out of it for a day, a week, or a month? Its just not worth it for me - I have to work and function on a day to day basis and cant risk feeling like crap for weeks....I understand your frustration because I'm still sort of new at this too but I would encourage you to let your body heal more and see how you feel. Hope this helps!

0

Share this post


Link to post
Share on other sites

I wasn't sure what to say, but I guess I can tell you what it is like for me after consuming gluten accidentally. First, there is the GI symptoms that last for a few hours. Not so bad to be perfectly honest, but it is exhausting. Then, I'll really and truly be exhausted. I will sleep for more than half a day, usually more like 20 hours a day for about half a week maybe. When I can finally find the strength to keep myself upright in a chair for more than an hour at a time I'll still be so weak and tired (physically) that I can barely do anything for weeks afterward. I'll find myself going hungry because I can't find the energy to walk to the kitchen and actually make something and actually get a fork to my face afterward. There is nearly unbearable all over pain. Think like having the flu, only worse. I'll become so tender to touch that my husband loving resting his hand on my arm will be so painful I'll just start to cry. This symptom by itself is the reason I have a separate bed that I have to use for about 3-4 weeks if I've been glutened.

I promise, this is not the sort of thing you want to do to yourself on purpose. Not to know what it's like. Not to know if you are on the right track. I used to wonder that myself but as time wore on and I steadily improved a bit at a time I realized the small things I had been doing wrong but also all the things I had been doing right slowly added up. We've all done so much damage to ourselves for so long with gluten. We just need to have patience. I know it's hard. I assure you I am the queen of not having patience, but there is nothing to do in this case but simply wait. Put one foot in front of the other, get out of bed every morning with renewed purpose. Or with running feet and a full bladder... you know, whichever suits you. :P

0

Share this post


Link to post
Share on other sites

I know the uncertainty is frustrating, but you will eventually figure out glutening symptoms...the hard way. You will get "got".

People have a range of symptoms-from mild to extreme. And your symptoms can change, especially in the first year. Mine did. It may sound like a good idea, but if you end up with an ai attack that lasts a month you're going to think you are the stupidest person on the planet for doing that to yourself on purpose.

Glutening is like a box of chocolates. You never know what you're gonna get.

0

Share this post


Link to post
Share on other sites

Everyone's symptoms are so all over the place and with so many of us having other intolerances it can be hard to tell. Regular grains give me fast GI symptoms. Gluten creeps up on me slow but them whammies me. Sometimes vomiting, sometimes not. I do not think it is worth it at all. One thing that is consistent is that I can feel my body being set back a good bit, i.e. undoing some healing.

0

Share this post


Link to post
Share on other sites
Ads by Google:


I have multiple intolerances and they all cause my psoriasis to flare. My digestive symptoms were very mild. But after over 14 months of being gluten-free, I did get glutened by some cross contaminated rice. Now I know what the rest of you who have severe digestive symptoms have gone through. I NEVER want to go through that again!

I live alone and don't eat at friend's houses or restaurants, so the chances of accidental glutening are all on my shoulders. I swear, if I ever decide to try a different food or a different brand, unless it is certified gluten-free, I will do without. I WILL read every label, EVERY time I buy a familiar brand. I'm never going to take a chance again!

0

Share this post


Link to post
Share on other sites

Like you, I thought it was normal to get a stomachache after most meals. I even had a doctor tell me "she's one of those people who gets stoamach aches after she eats" when I was about 8. :blink: I dismissed it and got tough so I wouldn't grimace or double over when in front of people; I always carried a sweater so I could hold it over my bloated belly to disguise it and push back.

The things we did, eh?

Anyways, I've been gluten-free for 3 months and glutened myself twice by mistake. For me, it felt the same as those stomachaches you used to get after eating; the ones before you went gluten-free. The belly ache hit about 20 minutes after eating and then turns into painful bloating which lasts a day, along with a migraine that lasted almost a week. It was super obvious! If you had GI issues after eating, I'm guessing that it would be pretty obvious for you too... whatever symptoms that have been relieved by going gluten-free, that's what you would get, and possibly slightly more severe.

I still get a few of the symptoms, but they are milder and much less frequent. As we heal, it will improve. :)

Best wishes.

0

Share this post


Link to post
Share on other sites

When I get glutened now, it is generally overwhelming nausea - the kind where you want to retch and have too much saliia and just can't think of anything else. :(

0

Share this post


Link to post
Share on other sites

Yes, as the others have said, eating gluten "just to see" is definitely not worth it. You're still healing, still figuring out what you should be eating. As you manage to cut all possible gluten out and heal up, then trust me, you'll know when you've accidentally gotten glutened.

For me, I know it was gluten when I few hours later my stomach starts doing flips, then the next day I'm all anxious and want to either cry or kill someone. Usually it takes a few days before my stomach can handle other food too.

Best advice, cut out the gluten, read labels, ask lots of questions when you eat out (I still have trouble doing this), and enjoy feeling better.

Peg

0

Share this post


Link to post
Share on other sites

I'd be very careful. I've read stories on this board about people trying to do the gluten challenge and ending up in the emergency room. Back when I started living gluten free (almost 3 years ago now) I didn't realize that I most likely had celiac. I just knew that stopping gluten and dairy was life changing. So about 2 months in we went on vacation and I thought I'd just "do my best" for the trip...and wasn't diligent at all. My experience was similar to Adalaide...did she say she also had such excruciating joint pain she couldn't get out of bed? I can't remember but it happened to me. For 3 weeks I slept 16 hours a day. I had a rash everywhere. It was so awful. Finally I ended up at the doctor's office and finally someone started talking to me about celiac and gluten intolerance. I wasn't willing to do the gluten challenge so I only have a "gluten sensitivity" although I believe in my heart I have celiac.

I think at this point you should just worry about healing and getting used to what it means to be gluten-free.

I wonder now that since I'm a few years in if I did get glutened that maybe my body would not go haywire, but I'm not willing to chance it.

0

Share this post


Link to post
Share on other sites

I did mention the pain but not how awful it is. I spend weeks on narcotic painkillers and while I've discussed with my doctor the fears we both have of the possibility of me becoming dependent we have both agreed that it is worth the risk. I also end up with the brain fog for a good 4-6 weeks which I'm still climbing my way out of now. Honestly, for the first 2-3 weeks I wouldn't be able to think my way out of a wet paper bag. I only wish I was dead for about a week or two, after that I start the uphill battle of feeling better until it's over. There are people who have true horror stories. How one accidental brush with gluten has left them on death's doorstep. I consider myself lucky that I only wish I was dead rather than actually being on the brink of death. I am fortunate though that due to life's circumstances I am able to consider high dose steroids as a treatment option to help alleviate symptoms, this is not an option for everyone.

0

Share this post


Link to post
Share on other sites

Thank you all for your nice responses. I was preparing to put up my dukes after using the word "cheat". I've seen some very unpleasant reactions at the mention of that word!

I'm glad I posted about this. I'm finding a lot of comfort in knowing that in these early stages, it's common to be frustrated in wondering, "did I get glutened or what?"

I've been having a stabbing, localized pain in my left side for the past several days. This is actually the abnormal pain that took me to the Dr. which ultimately let to my diagnosis. I thought I must have had an ulcer or diverticulitis or something. Nope. Celiac, straight out of left field. My endoscopy and colonoscopy didn't find any other cause for this stabbing pain so at this point, I'm thinking it must be my "you've been glutened" signal. Everything else that I've been feeling my whole life (and still experiencing) must be what's taking time to dissipate as I heal.

So thank you all again, very much!

0

Share this post


Link to post
Share on other sites

Klin, are you still drinking/eating dairy? Sometimes it's a good idea to cut it out while you heal. That might help with the stabbiness, or at least let you know that it's indeed gluten getting to you and not something else.

Just a suggestion (that I didn't follow when I started. I clung to dairy as long as possible. Now I'm casein intolerant)

Peg

0

Share this post


Link to post
Share on other sites

Klin, are you still drinking/eating dairy? Sometimes it's a good idea to cut it out while you heal. That might help with the stabbiness, or at least let you know that it's indeed gluten getting to you and not something else.

Just a suggestion (that I didn't follow when I started. I clung to dairy as long as possible. Now I'm casein intolerant)

Peg

Yes, I still eat dairy. I'm totally clinging to dairy!!! The stabbiness is gone. There were/are several other symptoms with the stabbiness. I'm calling it my 1st glutening so I can feel like I know how it feels and get over this feeling of needing to "cheat". Last weekend at a birthday party, I picked up my 3 y/o daughter's juice box and took a swig thinking it was my juice box. She had just finished enjoying pizza and birthday cake with that juice box. The stabbiness and discomforts started the next day.

0

Share this post


Link to post
Share on other sites

I wasn't sure what to say, but I guess I can tell you what it is like for me after consuming gluten accidentally. First, there is the GI symptoms that last for a few hours. Not so bad to be perfectly honest, but it is exhausting. Then, I'll really and truly be exhausted. I will sleep for more than half a day, usually more like 20 hours a day for about half a week maybe. When I can finally find the strength to keep myself upright in a chair for more than an hour at a time I'll still be so weak and tired (physically) that I can barely do anything for weeks afterward. I'll find myself going hungry because I can't find the energy to walk to the kitchen and actually make something and actually get a fork to my face afterward. There is nearly unbearable all over pain. Think like having the flu, only worse. I'll become so tender to touch that my husband loving resting his hand on my arm will be so painful I'll just start to cry. This symptom by itself is the reason I have a separate bed that I have to use for about 3-4 weeks if I've been glutened.

I promise, this is not the sort of thing you want to do to yourself on purpose. Not to know what it's like. Not to know if you are on the right track. I used to wonder that myself but as time wore on and I steadily improved a bit at a time I realized the small things I had been doing wrong but also all the things I had been doing right slowly added up. We've all done so much damage to ourselves for so long with gluten. We just need to have patience. I know it's hard. I assure you I am the queen of not having patience, but there is nothing to do in this case but simply wait. Put one foot in front of the other, get out of bed every morning with renewed purpose. Or with running feet and a full bladder... you know, whichever suits you. :P

[/quote

Feel so sorry for you .

God Bless you

pray for speedy recovery

0

Share this post


Link to post
Share on other sites

I dont have Celiac, but I am Gluten Intolerant. Through the last 6 months of being tested and poked, prodded and sedated, I went through various stages of being gluten free. I went totally gluten-free for a while and felt amazing. My dr told me I was fine and gluten was NOT my problem, so I went back to eating and feeling lousy. I had another dr tell me the same thing, so I kept eating it.

I finally saw a new dr who actually believed in intolerance and told me to stop, but I didnt.

I think it took another 2 more months to convince myself to stop. I go back and forth with trying to eat a little "just to see what happens" and it is the same thing...every time. I get dizzy and exhausted within 15 mins, and then a few hours later, I get a screaming headache. I get so mad when I think of the drs who told me since I didn't have Celiac Disease then it was "safe" to eat gluten. Sure, I may not have intestinal damage, but this is NOT "ok"!!1 It is NOT ok to feel lousy after eating food. I have learned the hard way...that if you react negatively AT ALL then you are having a reaction to what you ate and you should cease to eat it. Plain and simple.

It is really hard. I KNOW it is good for me to avoid it. I HAVE alternative products to eat when I feel like having a muffin, or bread. I KNOW how to cook gluten free and thankfully for me, I am not affected by cross contamination but still..when I see a warm, gooey chocolate chip cookie..its hard not to cave. But Then I think of how I will feel, even the next day and at some point I have to tell myself...no.

0

Share this post


Link to post
Share on other sites

Yes, our own experience can trump what a doctor tells us. They do not know everything; only we know how our body feels. Researchers and doctors are only just becoming aware of non-celiac gluten intolerance.

You really must, if you do not wish further harm down the road, resist the temptation of that gluteny gooey chocolate; goodness only knows there is enough gluten free gluteny gooey chocolate fairly readily available, even if you have to wait an hour until you bake some :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,460
    • Total Posts
      930,678
  • Member Statistics

    • Total Members
      63,884
    • Most Online
      3,093

    Newest Member
    Mato Sapa
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hi Steph and welcome I'm yet another Brit, funny how the alcohol threads flush us out I don't drink now but after a big night I used to get truly savage all day hangovers, much worse than those of my friends. They could include splitting headaches, vomiting, nausea, a 'fuzziness' in my head, sweats etc.  After I put the pieces together and went gluten free I had a 'big night' on cider only and the next day was a revelation. What I'd thought was a 'normal' hangover was, for me at least, anything but. With gluten out of the equation hangovers were a breeze! The difference was mind blowing and just one more example of how gluten had been messing with me over the years. So when I read your post my first thought was that there was some trace gluten contamination going on. However: Obviously you've been at the diet for some considerable time now and know the score. I know Coeliac UK are firmly of the opinion that all spirits are safe but some (note some this a contentious one :D) members here will tell you they react to gluten based grain spirits for instance which distillation should render safe.  Then there's the dangers of shared lines if you're drinking say Strongbow in a pub as alluded to above. Lastly it its wine, there's the often cited but maybe apocryphal these days 'flour to seal the casks' possibility. Finally there's bar snacks, maybe a brand of nuts etc that you snack on that may have changed their production process? I'm sure you've thought of these already, but it may be useful if you post your alcoholic drink choices / bar snack of choice up here maybe someone will have some input?.   The second thing which leapt out was: Would you class yourself as super sensitive to cross contamination etc? Firstly that would make the cross contamination theory more compelling. You could test that out by having a drink at home under controlled circumstances to see whether the same issue arises? That could also answer the quantity question. Does one safe drink trigger it, two, three etc? Finally, and this is one that I find difficult, knowing you have the gluten issue may lead you to assume it's that when it could be something else. I tend to attribute EVERYTHING in the world to gluten these days due to it being able to affect me in so many different ways. Crisis in Korea? Gluten. Russian tanks massing on the Ukrainian border? Check their wheat intake. Global warming? etc. So it may make sense to pursue some other ideas at the same time. Try:  http://goaskalice.columbia.edu/answered-questions/suddenly-drinking-alcohol-makes-me-sick http://www.steadyhealth.com/topics/very-abnormal-hangovers-thinking-it-could-be-allergy-to-alcohol Cheers Sorry, best of luck! Matt  
    • Similarly, I've been vegetarian for 25+ years.  A 2015 Nature study connecting emulsifiers with microbiome changes has me wondering about the processed foods that I ate in the past, and I wonder about the wisdom of eating as much seitan as I did.  I mostly prefer my post-diagnosis diet since it forces me to consider every ingredient and to cook from scratch more.
    • LOL, that might put it into perspective if I explain it that way. 
    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
  • Upcoming Events