Celiac, Feeling Great -- Thinking Of Trying Gluten -- Any Positive Experience?

[pr40]

I was diagnosed with celiac 3 years ago. When I get gluttend I get horrible, three to four month long diarhea.

Now, I've been doing well for about a year and am thinking of trying gluten. But before I make this possibly very stupid move, I wanted to ask for your experience.

did anyone go back to gluten and was without symptoms or with minimal symptoms?

thanks in advance.

[mamaw]

You  said  it  "very Stupid  move"" Celiac  does not  go  away  , you have  it  for  life  &  the only  way  to control  it's  rath  is  a  gluten-free  diet 24/7 365   days a year, no  cheating.. You may feel  better   because  your  intestinal tract  healed  which is  a  good  thing! But there  are  NO CURES for celiac . SO  if  you start  eating  gluten  again  your  symptoms  will come  back & bite  you at  some point maybe  far  worse  than your original  symptoms....

At  the present  time  no  "Cures" for  celiac... It is  an autoimmune  disease  ....

How  does  intestinal  cancer  sound  for  starters? 

PLEASE PLEASE PLEASE  banish  this  thought  of  ever  eating gluten  in  this lifetime............

[kareng]

Sounds like you know that isn't a good idea.

Open Original Shared Link

"A lifetime commitment

The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person’s age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve."

[BlessedMommy]

Ditto! Celiac is a life long disease that is controlled by a life long strict gluten free diet. If you go back to eating gluten, you can expect your health to deteriorate even if you aren't having violent symptoms every time, because the internal damage is still being done. 

[nvsmom]

Yikes! Don't do it. It's almost like saying "I got hit in the head with a bat in the past, and it messed me up, but I haven't been hit lately and I've forgotten what it feels like..." I know that is a huge exaggeration but it's along the same lines.

 

Don't mess with a good thing.

 

Best wishes.

[flowerqueen]

Oh my goodness! Why would you want to put yourself through it? I reiterate what everyone else has said, you must not try gluten again. No good can ever come of it. You don't wake up one morning and be cured, it is life long. The only reason you are feeling good at the moment is because you have not eaten gluten and your gut has recovered from being bombarded with this toxin. I say 'toxin' because that is exactly what it is to a celiac. As some one on this forum once said 'gluten is kryptonite'. Even if you ate it and had no noticeable side effects, the harm is being done to your gut. Please, do not do it, under any circumstances whatsoever.

[LauraTX]

To second what has been said by all of the above, don't do it.  You may benefit from going to the website Karen linked, which is the University of Chicago Celiac Disease center, and reading further through the tons of information they have there.  Try to get a more thorough understanding of your disease before offering advice to others on the same subject.  If you would like more info from this forum that was posted in the past, just put in "cheat" into the search box and you will see many topics with similar information to this one.

 

If you have all of the information you need and your problem is one of self-control, you may want to speak with a counselor or other emotional health professional to help you before you cause yourself harm.

[GFinDC]

Hi,

 

Maybe you could read these two threads before you make a decision about cheating on the gluten-free diet.  Not surprisingly, other people have thought about cheating and some actually did it too.  You may as well read about what happened to them so you have an idea what could happen to you.

 

Falling off the gluten-free wagon Post #37
https://www.celiac.com/forums/topic/67218-falling-off-the-gluten-free-wagon/?hl=%2Bfalling+%2Boff+%2Bthe+%2Bgluten-free+%2Bwagon

 

How bad is cheating?
https://www.celiac.com/forums/topic/94443-how-bad-is-cheating-on-the-gluten-free-diet-periodically/

[pr40]

many thanks to all who responded.

I know why going back to gluten is a bad move. I was looking for people who possibly have different experience.

They might exist, you know.

 

To second what has been said by all of the above, don't do it.  You may benefit from going to the website Karen linked, which is the University of Chicago Celiac Disease center, and reading further through the tons of information they have there.  Try to get a more thorough understanding of your disease before offering advice to others on the same subject.  If you would like more info from this forum that was posted in the past, just put in "cheat" into the search box and you will see many topics with similar information to this one.

 

If you have all of the information you need and your problem is one of self-control, you may want to speak with a counselor or other emotional health professional to help you before you cause yourself harm.

Thank you very much for responding to my post. I am not sure that your third sentence is warented though. I am trying to figure out if there are people who had different than expected experience with gluten. and this site is one of the few places where such people might be reached.

[kareng]

many thanks to all who responded.

I know why going back to gluten is a bad move. I was looking for people who possibly have different experience.

They might exist, you know.

 

Thank you very much for responding to my post. I am not sure that your third sentence is warented though. I am trying to figure out if there are people who had different than expected experience with gluten. and this site is one of the few places where such people might be reached.

If you would read the info on the site we linked you to , you would see that, even if you don't have a visible reaction, you would still be damaging yourself. So, it is possible that you won't feel immediately horrible, but it would catch up to you eventually. And why risk all the possible side effects associated with untreated Celiac?

[pr40]

I am new on this forum, but not new to participating in medical forums, however. This was my first post and I want to react to the TONE in some responses I got.

I want thank those who showed concern and say how much I appriciate their good will.

But, in a few posts, whose authors are identified as MODERATORS, tone is quite agressive and their agression is entirely unawarented.

 

I don't want to talk about my feelings, however. My point is about the nature of the celiac condition. As other immune conditions, it comes in a wide variety.

 

What is true for some celiacs is not true for others. And identifying subgroup to which your version belongs is very important, I'd say paramount. For one, it does matter what other auto-immune conditions you may have.

 

It seem that few on this forum make such distinction. Medicine, U of Chicago for instance, too, lumps all celiacs together. That is no longer good science.

[kareng]

It is your health, so do what you want with it. But , celiac is a distinct disease. If you have been reading legit medical studies, you find that no one has really been " cured". Many of us have seen people that have gone back on gluten after feeling better and come back here after a couple of years, sicker than ever. That is our experience and info that we are sharing with you. Our experiences and the legitimate medical research is why we are so firm with you and any others that might read this in the future.

We have answered you, on the assumption that you actually have Celiac and were really considering going back to a gluten containing diet. We are assuming that this is a real question and you would like some real answers.

Good luck to you.

[kareng]

You know what?  I know 2 people with Celiac that tried not eating gluten-free.  I don't think I can get them to make an account and post - both college kids.  They aren't my kids but friends of my kids.

 

The boy/young man - Diagnosed & went gluten-free.  Parents supportive, etc.  Did great, felt great, lost some needed weight, migraines gone, acne even got better.  Problem was, he went to college.  He felt fine & thought he would try to add some gluten in so he didn't feel as left-out at a very un-gluten-free friendly college.  Started having regular beer, a little regular pizza, fried chicken, etc.  Not huge amounts of gluten but, within a few months he felt like crap - migraines back, GI issues, tired, hard to study, grades slipping.  Back to a gluten-free diet now for about 2 years and feels great!

 

 

Teen age girl - diagnosed at about 12-13.  Parents never took it very seriously, so when she got to be 16 and was more on her own, they decided she could eat gluten again.  She did this for about a year when my son met her.  She had horrible GI issues & migraines.  Missing a lot of school.  Needed help with her schoolwork.  She was very pretty - so he helped her with her classes.  I got diagnosed about then.  He asked me a lot of questions.  She wasn't eating much of anything because she felt bloated, etc after eating.  Anyway, she went back to strictly gluten-free, with little help from her parents but lots of encouragement from her friends.  It took a few months, but she was back to functioning again.  

 

 

I have seen a lot of diagnosed Celiacs on this forum, over the years.  Not one that has said they can eat gluten again.  In my personal life, outside this forum, I probably know about 10 people with Celiac.  They all have noticeable issues when they eat gluten - accidentally or on purpose.

[moosemalibu]

I am new on this forum, but not new to participating in medical forums, however. This was my first post and I want to react to the TONE in some responses I got.

I want thank those who showed concern and say how much I appriciate their good will.

But, in a few posts, whose authors are identified as MODERATORS, tone is quite agressive and their agression is entirely unawarented.

 

I don't want to talk about my feelings, however. My point is about the nature of the celiac condition. As other immune conditions, it comes in a wide variety.

 

What is true for some celiacs is not true for others. And identifying subgroup to which your version belongs is very important, I'd say paramount. For one, it does matter what other auto-immune conditions you may have.

 

It seem that few on this forum make such distinction. Medicine, U of Chicago for instance, too, lumps all celiacs together. That is no longer good science.

 

Hi pr40 - I'm sorry you feel like the moderators are giving you a bad tone. However, the consensus of the responses you have had in regards to your question is: if you have Celiac's disease the management is exclusively through a gluten-free diet. One should not cheat on the diet or they risk recurrence of symptoms as well as higher risk factors for other associated diseases (i.e. GI lymphoma, type 1 diabetes, others). My suggestion to you is to look up what cheating on your gluten-free diet does. I don't think there is or ever will be anytime soon,a special sub group of Celiac's disease that allows gluten to stay in their diet. Good luck to you.

[GFinDC]

Hi pr40

 

I am new on this forum, but not new to participating in medical forums, however. This was my first post and I want to react to the TONE in some responses I got.

I want thank those who showed concern and say how much I appriciate their good will.

But, in a few posts, whose authors are identified as MODERATORS, tone is quite agressive and their agression is entirely unawarented.

 

I don't want to talk about my feelings, however. My point is about the nature of the celiac condition. As other immune conditions, it comes in a wide variety.

 

What is true for some celiacs is not true for others. And identifying subgroup to which your version belongs is very important, I'd say paramount. For one, it does matter what other auto-immune conditions you may have.

 

It seem that few on this forum make such distinction. Medicine, U of Chicago for instance, too, lumps all celiacs together. That is no longer good science.

 

Hi pr40,

 

I am not sure what you mean about sub-groups of celiac disease patients?  There many differences in symptoms that people experience, and some people have mostly non-GI symptoms.  Some people appear to have no symptoms and they call that silent celiac.  Some people have the skin rash as a prominent symptom that is called dermatitis herpetiformis.  Some have mainly nuerological affects and they call that gluten ataxia.

 

There are 300 known possible symptoms of celiac disease, so that is quite a variety of symptoms that people can get.  Different symptoms is something that could be called a sub-group I think.  Like a sub-group of primary symptoms.  But I am not sure that is what you are thinking of.

 

Celiac disease is an auto-immune condition.  The immune system doesn't forget what it learned easily.  If it did there would be no use in getting vaccinations for measles etc.  But because the immune system learns and remembers the response, you can walk by somebody with measles 10 years after your vaccination and not get measles yourself.  Would you really want it any other way?

 

If you read those threads I linked earlier you will find responses by people who went back to eating gluten.  There is no harm asking questions about what would happen.  You could do a search on gluten challenge and read some of the threads people post about that too.  People who go off gluten before they are tested sometimes decide to get tested later.  Then they have to do a gluten challenge, basically eating gluten for 3 months or so.  In that time the antibodies build up in the blood enough to be detected.  Some of them have a very hard time completing the gluten challenge because of their symptoms though.

[pr40]

Hi pr40

 

 

Hi pr40,

 

I am not sure what you mean about sub-groups of celiac disease patients?  There many differences in symptoms that people experience, and some people have mostly non-GI symptoms.  Some people appear to have no symptoms and they call that silent celiac.  Some people have the skin rash as a prominent symptom that is called dermatitis herpetiformis.  Some have mainly nuerological affects and they call that gluten ataxia.

 

There are 300 known possible symptoms of celiac disease, so that is quite a variety of symptoms that people can get.  Different symptoms is something that could be called a sub-group I think.  Like a sub-group of primary symptoms.  But I am not sure that is what you are thinking of.

 

Celiac disease is an auto-immune condition.  The immune system doesn't forget what it learned easily.  If it did there would be no use in getting vaccinations for measles etc.  But because the immune system learns and remembers the response, you can walk by somebody with measles 10 years after your vaccination and not get measles yourself.  Would you really want it any other way?

 

If you read those threads I linked earlier you will find responses by people who went back to eating gluten.  There is no harm asking questions about what would happen.  You could do a search on gluten challenge and read some of the threads people post about that too.  People who go off gluten before they are tested sometimes decide to get tested later.  Then they have to do a gluten challenge, basically eating gluten for 3 months or so.  In that time the antibodies build up in the blood enough to be detected.  Some of them have a very hard time completing the gluten challenge because of their symptoms though.

You say that there are 300 different symptoms of celiac -- indeed. but not one person has all of them. We have some and then we also tend to have other auto-immune problems. Science is not there yet, able to precisely differentiate between these possible sub-groups. but we who live with celiac, who have experience of it, can speak about our individual symptoms and try to find some rules that apply to me and some others but not to ALL celiacs. You seem to think that there is ONE celiac -- that way of thinking is on its way out. 

[kareng]

You say that there are 300 different symptoms of celiac -- indeed. but not one person has all of them. We have some and then we also tend to have other auto-immune problems. Science is not there yet, able to precisely differentiate between these possible sub-groups. but we who live with celiac, who have experience of it, can speak about our individual symptoms and try to find some rules that apply to me and some others but not to ALL celiacs. You seem to think that there is ONE celiac -- that way of thinking is on its way out.

Could you please link to your scientific evidence that Celiac disease is more than 1 disease? That the rules of autoimmune disease do not apply?

I am sorry but you seem to be hoping someone will tell you that you are "cured" and can eat gluten again. Currently, there is no "cure".

[GottaSki]

You say that there are 300 different symptoms of celiac -- indeed. but not one person has all of them. We have some and then we also tend to have other auto-immune problems. Science is not there yet, able to precisely differentiate between these possible sub-groups. but we who live with celiac, who have experience of it, can speak about our individual symptoms and try to find some rules that apply to me and some others but not to ALL celiacs. You seem to think that there is ONE celiac -- that way of thinking is on its way out. 

 

There are indeed a multitude of presentations within Celiac Disease, yet as it stands today -- there is only one treatment which is the complete avoidance of the gluten protein.

 

If you decide to return to eating gluten, I suggest you gather real data while you are experimenting with your health. 

 

Before you start, have a complete celiac antibody panel, nutrient testing, Bs, D, Iron minimally along with a CMP and CBC. 

 

Return to eating gluten for a set period of time -- as long as symptoms don't sidetrack your experiment.

 

Then retest the same data points. 

 

I don't think you should do it -- but if you choose to -- please share your results.

 

Thanks

[IrishHeart]

Hi PR40 

I just saw a presentation by Dr. Fasano, one of the world's leading celiac specialists and he never once said "good news! there are celiacs who can resume eating gluten without consequences!!". (if he had, the whole room full of people would have probably run out for bagels and dozens would have been killed in the stampede....) 

 

I think maybe you are missing what some people are saying to you: we only hear horror stories from the people

on this forum or in our lives who resume eating gluten--  and the message is always the same: it's not a good idea. I know a guy who did this in college and the result was? now he has insulin-dependent diabetes that he has to manage along with celiac.... or they develop lymphoma of the GI tract.... or sadly, we never hear from them again because they have passed on (and we get an email from their relatives letting us know).

 

Autoimmune diseases are for life. Treatable. yes. Cured? Afraid not. And our treatment is a strict gluten free diet. that's it. No meds we can take, no protective enzymes or anything. 

 

If you are feeling well, hon, why would you want to risk acquiring more AI diseases, cancer, etc? I guess I am not sure why you want to harm yourself this way. It's just food. Not worth hurting yourself, IMHO.

[GFinDC]

You say that there are 300 different symptoms of celiac -- indeed. but not one person has all of them. We have some and then we also tend to have other auto-immune problems. Science is not there yet, able to precisely differentiate between these possible sub-groups. but we who live with celiac, who have experience of it, can speak about our individual symptoms and try to find some rules that apply to me and some others but not to ALL celiacs. You seem to think that there is ONE celiac -- that way of thinking is on its way out. 

Hi Pr40,

 

Maybe there are different versions of celiac disease.  Maybe not.  Can you provide any validation for your suggestion?  I'd certainly be interested in reading it.  You are correct that medical science doesn't know everything about celiac disease yet.  They don't know much about NCGI yet either, but there is research being done on it.  Some of the research on NCGI suggests that the proteins causing those NCGI reactions might be different ones (not gliaden) than what cause the reaction in celiac disease.  Research into NCGI is not very advanced yet.

 

Here's a discussion of celiac and NCGI and the proteins involved.

 

https://www.celiac.com/forums/topic/106251-non-celiac-gluten-sensitivity-might-not-be-due-to-gluten/?hl=omission

[pr40]

Hi Pr40,

 

Maybe there are different versions of celiac disease.  Maybe not.  Can you provide any validation for your suggestion?  I'd certainly be interested in reading it.  You are correct that medical science doesn't know everything about celiac disease yet.  They don't know much about NCGI yet either, but there is research being done on it.  Some of the research on NCGI suggests that the proteins causing those NCGI reactions might be different ones (not gliaden) than what cause the reaction in celiac disease.  Research into NCGI is not very advanced yet.

 

Here's a discussion of celiac and NCGI and the proteins involved.

 

https://www.celiac.com/forums/topic/106251-non-celiac-gluten-sensitivity-might-not-be-due-to-gluten/?hl=omission

the last two posts ask me to provide validation, medical research that supports the claim that celiac comes in different forms. To me that claim seems obivous. No condition that has 300 possible symptoms can be one. We do need validation for how to make distinction between celiacs -- which is not there yet and which, of course, I cannot provide.

In general, seeing celic as having different forms requries a philosophical change. and that philosophical change is slowly coming and includes reaserch on other auto-immune conditions. once basic mechanisms of auto-immunity are understood better, we can also expect that we will understand celiac symptoms better and that, consequencely, we will be able to separate different forms with scientific precission.

what we posses at this very moment is our experience and that is what I was looking for in my original post, persons who migh have a remission of the symptom which made them seek diagnosis.

other auto-immune condition have remission and it is not unreasonable to suppose that celiac may have it esp since most of my life it was in a state that I have to call latent. and further, to the best of my knowledge, triggers of celiac are not well understood either, which leaves at least a theoretical possibility of a reversal.

And please notice that I am not using the word cure here and that I am not calling celaic a disease either, but a condition.

Finally, thank you for responding to my post.

[notme]

You say that there are 300 different symptoms of celiac -- indeed. but not one person has all of them. We have some and then we also tend to have other auto-immune problems. Science is not there yet, able to precisely differentiate between these possible sub-groups. but we who live with celiac, who have experience of it, can speak about our individual symptoms and try to find some rules that apply to me and some others but not to ALL celiacs. You seem to think that there is ONE celiac -- that way of thinking is on its way out. 

you're skipping, dude.  start the song over.

 

you wanted to hear from people who are diagnosed celiac purposely eating gluten.  in 2 days, not one person has responded who is doing that.  i think you have the answer to your question.   i hope that people are here to receive advice and help with this disease.   

[GF Lover]

What does any of this gibberish have to do with making a decision to eat gluten if you are a Celiac.  I haven't seen any volunteers so lets just let this discussion roll off the tracks before it get hyjacked.

 

Colleen

[luvs2eat]

I know what you mean about the aggressive tone, but think of it this way. When I was a newbie (10+ years ago) I mentioned that my symptoms were not so bad that I couldn't remove a burger from the roll or remove croutons and blow off the crumbs. To say I got lambasted is an understatement. I was so angry, I deleted the celiac forums from my favorites. A few weeks later I thought to myself, "Who's the idiot here? Me, or the people who are telling me EXACTLY how foolish my behavior is?" I came back w/ a new perspective. There's no p%$#@#-footing around celiac disease. Avoid gluten forever, or suffer the consequences.

[IrishHeart]

 to the best of my knowledge, triggers of celiac are not well understood either, which leaves at least a theoretical possibility of a reversal.

And please notice that I am not using the word cure here and that I am not calling celaic a disease either, but a condition.

Finally, thank you for responding to my post.

 

(1) but, the triggers of celiac are understood. Maybe you could read Dr. Fasano's new book. It has great info.

(2) a theoretical possibility of a reversal of what? the symptoms? okay, but that's not theoretical, hon....it's a fact: symptoms reverse off gluten.

Symptoms return ON gluten. Off--remission. On--resurgence.

(3) celiac is an autoimmune disease. You may refer to it as you wish, but it does not change that fact.

(4) No one on this forum is going to tell you they went back on gluten on purpose and all is well. 

 

Sometimes when we get these kinds of queries, we wonder if people are just messing with us.

You aren't,  are you?