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

[nvsmom]

 

...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....

 

 

My symptoms tended to wax and wane over the decades BUT when one symptom improved, others got worse. For example, My stomach issues were not that bad in my late teens and early twenties - better than they were as a child and in my thirties - but other things went wrong. My tummy didn't hurt but I developed ITP (linked to celiac disease) and it nearly killed me when I was 18. It would not go into remission so they took my spleen out.  Then I started to develop arthritis in my early 20's and fatigue with hair thinning; it turns out my thyroid was on it's way out, but I had very little bloating from celiac disease...

 

The longer I ate gluten, the more permanent health problems I ended up with. They came and went in fits and bursts but I never seemed to be able to regain my previous level of health.  Things kept slipping.

 

Celiac SYMPTOMS can go into remission but once you've got the condition, it's with you for life.  

 

Best wishes.

[NoGlutenCooties]

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. 

 

I think you are confusing different sets of symptoms with different "versions" of a disease.  The disease is the same - it is an autoimmune disease in which the body generates antibodies in response to gluten proteins.  Some people do, however, generate different antibodies (which is why there is about 5 different blood tests for Celiac).  To my knowledge, no one has paired specific antibodies with specific symptoms but who knows - maybe someday they actually will.  But they are all manifestations of the same disease.

It's a little like members of the same family all coming down with the flu.  It's the same virus - they all gave it to each other.  But one might get bad diarrhea, another one throws up, and another person gets more chills and aches than the other two.  It's not that they each got a different version of the same virus - their bodies just reacted differently to it.

 

I know what you mean about the aggresive tone too.  And I agree, that often it is not warranted and too over the top.  But if you read beyond some of the snarkiness, you get a lot of really good information.  These folks have been there, done that, bought the T-shirt - and lived to tell the tale.  They are trying to convince you not to do something that will have serious, long-term, negative impact on your overall health.  Not MIGHT have - but WILL have.  Period.

 

I really hope you can give up on the idea of going back to eating gluten.  But if you decide to do it, I really hope your body has an immediate, violent reaction to it - so that you know sooner rather than later that it was a mistake.  I don't think you'll find a single person who was accurately diagnosed with Celiac who was able to go back to eating gluten and did not either have an immediate bad reaction, or a slower return of symptoms.

[124chicksinger]

All of the posts aside, what I am curious about is -  what food(s) are you missing?  Are there not suitable substitutes for what you're missing? 

[IrishHeart]

You know, I have to laugh at some of the comments on this thread. As usual, whenever rational responses are given, it's considered "aggressive.'

 

I do not know how anyone can tell "tone of voice" from type written words anyway.

(usually someone uses the "you're being aggressive and snarky card" when they simply do not like the answer.

It's a passive-aggressive defensive mechanism. I do not like your answer, so i will throw it back on you and call you aggressive.)

 

I am about as "dear old auntie" in my responses as it gets, but I still get blasted from time to time because I was not "nice enough" somehow. 

 

But there is one thing I will not condone--cheating on the diet. 

 

I really do not know why people assume there is any "snark" or "aggression" when the people who continue to faithfully post information are the most compassionate bunch there is. I know.They are all friends of mine.

 

Maybe we all just find questions like this rather odd, but we take the time to answer, post responses and try to give people the correct information  since the only treatment for celiac is the gluten free diet. Maybe some of us who nearly died from this thing find someone's willingness to gluten themselves absurd and ill-advised. (I would say stupid, but that has  a bad connotation, so I will refrain from using that one) 

 

You see, word choice is essential here.

 

But coming on an established celiac forum and asking "are there any positive experiences from eating gluten again?" is the same as asking people on a  diabetes forum if they have loaded up on cakes, candy and cookies lately and how did that work out for you?.

 

It seems as if someone is mocking me. But that's just IN MY OPINION.

What do I know?  Nothing, according to some folks. 

[GottaSki]

If my response was perceived as aggressive -- it could not be further from the truth.

 

I'm all about the research -- I'm returning to school at my old age to - hopefully - obtain a Chemistry degree and become a real live medical researcher - rather just playing one in hyperspace.

 

I said clearly that I don't think the OP should resume a gluten filled diet -- BUT if they choose to -- please, please gather some real data while they are at it.

 

Not snarky nor aggressive -- simply the way my brain works.

[kareng]

If you think I am aggressive or snarky, fine. Sometimes I am. In this case, I just wanted to be as firm as possible. I didn't feel I should say " Sweetie, whatever you think is best." I am responding to a poster who wants to do something dangerous & to people reading this thread that may have that as a legitimate question. I was nicer than I would respond to my kid who is running into the street without looking.

Arguing that the facts aren't the facts...... Well.... I can't put you in time out or make you stay inside until you agree to stop and look before going in the street. All I can do is try to give you the facts as they are now. Will there come a day when a diabetic doesn't need insulin? Maybe. Will there come a day when kids don't have to look before chasing a ball into the street? Maybe. Will there come a day when a Celiac can eat gluten safely? Maybe. We just aren't there yet for any of these scenarios.

Edit: Op, are you a college student taking an Ethics of Medicine class? Sort of sounds like you might be.

[mamaw]

Is  this  a heated  discussion?  Well  depends  on how  one looks  at  it...... I feel we  as  celiac  people  never  want  to  encourage  someone  to do  something  that we know will bring  them  harm... we  become  protectors ...we see  the dangers.....

 I  think it is  human  nature  for us  to  want to protect... Would  I tell a  drug  addict  that   one  shot  of  heroin  won't  hurt  them? I  don't think so because  for  some  one shot is deadly for  others  it  doesn't  phase  them... this is true  of  celiac..... we  all are  wired  differently so  what  one  responds  to  in a  violent  way  others  may not.... it  certainly would be  a  boring  world  if  we  were...I think no matter  how  we  react  to wheat   ,  the  outcome  is the  same   ,,, a gluten-free  lifestyle for  life... the only way  I  ever see a  miracle  happening is by the  grace  of  God.. Other than  that  I say  autoimmune  diseases  are  treatable  but  no  "CURES"

 

This  is  the  best  disease  out of the other  autoimmune diseases to  have, no  deadly drugs,  no  chemo, heck once  we  get  healing  with gluten-free  food  we  live long  &  healthy , happy lives...how  much  easier can it  get?

Food  surrounds  us  everywhere  we  go & I think  that is  why so  many want to believe  they  can challenge  this  disease    & win because  they  want  to be  "normal" ;  peer  pressure  causes  us to think & do  off the wall things   like play "Russian Roulette""  with  our  lives....

 

Research  has a long  way to go  for us celiac  ....

[LauraTX]

I think we are all just being messed with here.  Our replies are substantial enough so anyone reading it in the future understands what the truth is on a celiac consuming gluten.  I am going to stop feeding the troll now.

[motheroftwins2010]

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.

 To answer your question no I don't know any people with celiac disease who have not had a reaction after being gluten free and then again ingesting gluten. Everyone I've spoken too about this has had some reaction definitely not the same for everyone like me I do not get GI symptoms right away if at all but I get debilitating pain which can leave me unable to support my already small body with my legs meaning I can't walk and for some reason my body waits 6 hours past exposure to react. Other people just get gi problems, others may get both, even others may have seizures, etc.

I do however know people who had Latent celiac disease (which I assume you are referring to when you say different types of celiac which really celiac disease is celiac disease regardless of your symptoms damage is done) and went gluten free felt fine and did what you are considering and ate gluten their reaction was just as intense as mine and other celiac people I've spoken to. While the actual symptoms may be different the intensity seemed to be the same and very surprising to them since they had no classic celiac symptoms beforehand.

As for "different" types of Celiac disease I assume you mean the latent celiac disease and refractory sprue which in fact cause damage no matter the presence or absence of symptoms. But I'm wondering if you are referring to gluten sensitivity vs celiac disease vs a wheat allergy?

Those are all distinct diseases and are not different "levels" of celiac disease. A person can outgrow and allergy, celiac is an autoimmune disorder not an allergy, and gluten sensitivity is not well enough understood to specify what it is at this time. All they know is it's not the other two but it's real. The three illnesses do however all have the same treatment which is a strict adherence to the gluten free diet.

I hope that helps and I hope you understand the tone is one of concern not anger.

[pr40]

I think you are confusing different sets of symptoms with different "versions" of a disease.  The disease is the same - it is an autoimmune disease in which the body generates antibodies in response to gluten proteins.  Some people do, however, generate different antibodies (which is why there is about 5 different blood tests for Celiac).  To my knowledge, no one has paired specific antibodies with specific symptoms but who knows - maybe someday they actually will.  But they are all manifestations of the same disease.

It's a little like members of the same family all coming down with the flu.  It's the same virus - they all gave it to each other.  But one might get bad diarrhea, another one throws up, and another person gets more chills and aches than the other two.  It's not that they each got a different version of the same virus - their bodies just reacted differently to it.

 

I know what you mean about the aggresive tone too.  And I agree, that often it is not warranted and too over the top.  But if you read beyond some of the snarkiness, you get a lot of really good information.  These folks have been there, done that, bought the T-shirt - and lived to tell the tale.  They are trying to convince you not to do something that will have serious, long-term, negative impact on your overall health.  Not MIGHT have - but WILL have.  Period.

 

I really hope you can give up on the idea of going back to eating gluten.  But if you decide to do it, I really hope your body has an immediate, violent reaction to it - so that you know sooner rather than later that it was a mistake.  I don't think you'll find a single person who was accurately diagnosed with Celiac who was able to go back to eating gluten and did not either have an immediate bad reaction, or a slower return of symptoms.

thanks for your response, NoGlutenCooties. You suggest that I might be confusing symptoms with versions. I hope I am not. You offer, at the end of the first paragraph, that bodies react differently to protein and that these are just different symptoms. But possibly this is not correct because cealic is an auto-immune reaction and it would stand to reason that such reaction should be a part of the version of the disease we have. There is also this thing: celieacs tend to have other auto-immune problems which, again, are not uniform.

When I mention TONE of some posts, I am comparing that TONE to what I am used to from other forums about medical condition. there are forums where tone is very different, more supportive across the board, more open to nuances in understanding of their condition.

I am not too satisfied with what medical professionals I can acess or those that are publicly availabe offer and I use on-line forums to educate myself about other possible ways of thinking about  auto-immune problems. For this, individual experiences are invaluable.

To answer, then, my questions which started this thread, based on what you all say, it would be a very stupid move to experiment with gluten. Thank you for helping me come to that conclusion.

[IrishHeart]

 

I am not too satisfied with what medical professionals I can acess or those that are publicly availabe offer and I use on-line forums to educate myself about other possible ways of thinking about  auto-immune problems. For this, individual experiences are invaluable.

To answer, then, my questions which started this thread, based on what you all say, it would be a very stupid move to experiment with gluten. Thank you for helping me come to that conclusion.

I agree with you that support from those who share a disease like fellow celiacs (or diabetics or those with MS, etc) is valuable, but make no mistake:

None of us are doctors (except Jebby but even she would never give any of us medical advice because that just opens her up for all sorts of legal issues) 

and none of us are substitutes for a gastroenterologist trained in treating celiac patients.

 

Please consider that everything we said comes from a place of concern. Best wishes to you.

[C-Girl]

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.

 

I'm sorry you feel the tone was aggressive, but what with all that all of us have been through, not only is this a completely silly question, it is borderline troll to complain that you are looking for someone out there who went back on gluten and had a positive experience.

 

Perhaps you should educate yourself a little bit about what celiac is and how it works, read the newbie thread, and reconsider before posting something like this and then complaining about the reaction.