Forum Section For Non-Celiac On The Gluten-Free Diet?

[GFinDC]

I was thinking it might be good to have a section of the forum for non-celiacs who are following the gluten-free diet.  There lots of people interested in eating gluten-free these days for various reasons.  Celiac disease is one very  important reason to eat gluten-free.  But other people might want to eat gluten-free because they have health issues that might be improved even though they don't test positive for celiac disease.  Some examples would be people with NCGI (non-celiac gluten intolerance) which there are no standard medical tests for right now.  Another might be people with Crohn's disease, who sometimes follow the gluten-free diet and find it helps their Crohn's symptoms.  Another group would be diabetics, who might sometimes follow a very low carb diet to control their glucose levels, which means they end up essentially following a gluten-free whole foods diet.  Then there are a large number of people who just want to try gluten-free to see if it helps their symptoms that haven't got an official doctor's diagnosis yet.

 

There is a pre-diagnosis section of the forum that fits some of these categories, but it doesn't fit them all.  It seems to me the best place for people to get information on eating gluten-free effectively is right here on this forum.  Opening it up to non-celiacs and making it more welcome to people without an official doctor's blessing seems like it would make it easier for them to find information.  Many people these days want to try eating gluten-free for a while to see if they feel better.  While the forum is geared towards supporting celiacs, it seems like it could be used to help support other people also.  Some have a clear medical condition that is benefited by eating gluten-free, others may have a less clear medical situation but want to try gluten-free as a test.

 

Many of us have experienced years of trying to get a medical diagnosis for our celiac disease, so we know it can be hard to get a real answer from the medical establishment.  Medicine seems to be advancing at a rapid pace, but it is not at the point where we know everything about the effects of gluten and wheat etc on the human body.

 

What I suggest would be nice, is to have a section of the forum for people who want to try eating gluten-free to see if they feel better, for whatever reason.  There doesn't seem to be a better informed group of people on eating gluten-free than right here on this forum.  So many people could benefit from asking questions here and not feeling like they aren't accepted just because they aren't celiacs IMHO.  I think this forum is pretty accepting of non-celicas, including those with NCGI, but an actual section set aside for non-celiacs might be good to set up.  Hopefully it could be made clear that people posting in that section are not celiacs and are not asking for celiac advice so much as gluten-free eating advice.  There is plenty of confusion in the public about eating gluten-free, and there is plenty of knowledge here to share.

 

There are some obvious issues that could arise.  Like celiac members getting irritated about non-celiacs taking the gluten-free diet less seriously than them.  And people with Crohn's or diabetes not understanding the strict avoidance of gluten that celiacs have to do.  And people giving advice will have to remember that it is non-celiacs they are talking to and trying to help.

 

It seems to me that there is a concentration of knowledgte on this forum about eating gluten-free, and many people wanting to learn the same.  But they may not feel welcome because the forum is so geared to celiacs and NCGI only.  Or it may appear that way to an outsider at least.

 

So, what do the other peeps think?  How about the Scott-head who is the admin and chief honcho?  Personally, I think eating gluten-free and whole foods is good for many people, even non-celiacs.  Can we share the hard learned rules and help some other peeps?

 

[gilligan]

I think the name - celiac.com - says it all.  Personally, I know that when I first started having issues, and didn't know I had celiac, this is where I came for information.  I don't see that the information is any different for someone diagnosed with celiac or someone needing info for ncgi or other health related.  The information would remain the same, so why would a separate category be necessary?

[GFinDC]

Hi Gilligan,

 

Thanks for responding.  The thing is, people who follow the gluten-free diet for reasons other than celiac disease may not have the same motivation to be strictly 100% gluten-free.  They aren't nessecarily going to have an autimmoune reaction to slight amounts of gluten or cross-contamination like a celiac would.  So the advice they would get could be somewhat different.  Also, it would be confusing for people who are celiac to answer questions for them in the regular forum sections.  As they would expect to be answering questions from a fellow celiac, vs a person with diabetes, or Crohn's etc.   So keeping the info separate would be less confusing for current celiac members, and for the  people who aren't celiac but still want to learn.

[kareng]

I think that, because this is Celiac dot com, people will come on the forum as a whole expecting Celiac info. It is about more than just a gluten-free diet. Many people don't even pay attention to the titles of the sub- sections. They just know they have logged onto C.com or googled something and it is on c.com. Many people do come on here to figure out what is gluten-free and how to eat gluten-free - even if they are fad dieters or have another illness.

I would still encourage every one of them to get tested for celiac before they go gluten-free.

I would hate for people, new to Celiac, to come to c.com and get bad info like " it's ok to take the burger off the bun " or something like that becuse they didn't see the title of the topic section where the posts are located. As you have seen, people often google something and then respond on c.com to threads about products that are many years out of date. They don't notice the date. I can't tell you how many put their questions in the wrong forum section because they don't pay attention to it.

[LauraTX]

I agree with Kareng.  People pulling up and replying to posts from 8 years ago shows to me that the category wouldn't be noticed and potentially spread information about non-celiac levels of seriousness about the diet as true to celiacs- it is named celiac.com.  I think welcoming non-serious fad dieters on here would chase people away who really need the forum for celiac and NCGI.  If someone is just a diabetic or just paleo they are not following a gluten free diet, they are eating low carb/no carb and that just happens to eliminate most gluten.  I would LOVE to be able to take the burger off the bun, but what I have is a step above that in seriousness and I like this forum because that is wholly understood by anyone who has been around for a while.

 

Any time someone comes on here asking about things that are not celiac related and admits to not having celiac or not caring about it, they pretty much get nicely ran off and told we only know about celiac, not whatever other disease.  I don't think it would be right for celiac members to be opening themselves up to give advice to people with other health conditions that we have not had the experience of becoming our own personal experts on like our own ailments.  I think the Related Disorders category covers any overlapping issues well.

 

Lastly, if someone wants to non-seriously eat gluten-free, there is a TON of information on the internet nowadays for them to peruse.  If they are going to have extensive questions on the issue, then they probably do take it seriously and would be welcomed here. But like Karen said, anyone who thinks they may improve/does improve on a gluten-free diet really should be tested for Celiac anyways, and that is just the hard truth.

 

TL;DR:  Please don't make me comingle with crazies who eat gluten-free misguidedly, I think it will drive out the Celiacs who need this forum.

[GFinDC]

Humpf!!!  Time to think aother great idea then.  This one seems to be shot down in flames!   Thanks for your input everyone.  I guess they can all figure it out on their own.

[gatita]

Humpf!!!  Time to think aother great idea then.  This one seems to be shot down in flames!   Thanks for your input everyone.  I guess they can all figure it out on their own.

 

Awww... As someone diagnosed with wheat allergy, I liked the idea. Just a little sub-forum, nothing major LOL. But I can also understand  the points raised above.

[GottaSki]

Humpf!!!  Time to think aother great idea then.  This one seems to be shot down in flames!   Thanks for your input everyone.  I guess they can all figure it out on their own.

 

I like this idea.  We have an other intolerance section -- but this is not another intolerance -- it is the subject intolerance.

[FruitEnthusiast]

Maybe I have the wrong idea about this thread, but as a NCGI who tested negative for Celiac because my Dr. told me to go off gluten before getting tested, I really wouldn't want to be lumped together with non-celiacs who don't have to take gluten seriously just because they don't have an official dx. I've been extremely sick for two years and consider this a very serious disease for me no matter what my diagnosis is. I see this as a site for those who have been or are seriously ill in relation to gluten. I wouldn't dare touch the stuff again.

 

I may be overly sensitive about this since I sometimes feel I'm not in the "club" of those who have a positive dx, even though I've been so sick. This just struck a chord in me I guess because I wouldn't want to be further separated or put into a category of "the people who aren't really sick" by opening the forum up to potential fad dieters or others who don't take this issue seriously.

 

Again, no offense to anyone's ideas, and I realize this is my issue, but I found myself feeling potentially down graded to a non-serious category and it really upset me, so I felt the need to respond. I guess I'm in some sort of an in-between category which can be really hard. I don't know if NCGI is accepted as a serious thing, I don't mean on this site, but just in general. I don't know if I like the "NC" part of it. Gluten Intolerant can be serious without considering it's relationship to Celiac disease, or at least that's how it seems to me.

 

I may have opened up a can of worms not intended by the original post, but it seemed relevant here.

[GottaSki]

Hi FE...

 

I understand your thoughts...my read on Paul's idea is from the perspective that there are many folks that remain in the mis or undiagnosed category.  With Celiac Disease experts estimating over the 6% of population as having some level of gluten sensitivity -- the numbers of people left in the gray is likely to increase.

 

I'd like a section like Paul suggested so that we can pin important -- TEST FIRST -- information for anyone wandering through that may have tried gluten-free and felt better OR had their doctor tell them to remove gluten to see how they feel rather than testing them properly OR simply considering "trying" this gluten-free thing.

 

I would imagine about one quarter (possibly more) of my posts for a very long time were singing the TEST PROPERLY FIRST.....and here is how song.

 

Like it or not -- both the newly diagnosed with Celiac Disease along with many others trying to learn if gluten may be the key to their health issues find this forum.  This is why I'd prefer a separate category, so that we can direct folks to the proper testing and diet information.

 

It took a very long time for my teenaged son with the NCGS distinction to feel comfortable with his status -- it was even hard for me to explain to family and friends as we struggled through the flawed celiac diagnostic process.

[BlessedMommy]

Maybe I have the wrong idea about this thread, but as a NCGI who tested negative for Celiac because my Dr. told me to go off gluten before getting tested, I really wouldn't want to be lumped together with non-celiacs who don't have to take gluten seriously just because they don't have an official dx. I've been extremely sick for two years and consider this a very serious disease for me no matter what my diagnosis is. I see this as a site for those who have been or are seriously ill in relation to gluten. I wouldn't dare touch the stuff again.

 

I may be overly sensitive about this since I sometimes feel I'm not in the "club" of those who have a positive dx, even though I've been so sick. This just struck a chord in me I guess because I wouldn't want to be further separated or put into a category of "the people who aren't really sick" by opening the forum up to potential fad dieters or others who don't take this issue seriously.

 

Again, no offense to anyone's ideas, and I realize this is my issue, but I found myself feeling potentially down graded to a non-serious category and it really upset me, so I felt the need to respond. I guess I'm in some sort of an in-between category which can be really hard. I don't know if NCGI is accepted as a serious thing, I don't mean on this site, but just in general. I don't know if I like the "NC" part of it. Gluten Intolerant can be serious without considering it's relationship to Celiac disease, or at least that's how it seems to me.

 

I may have opened up a can of worms not intended by the original post, but it seemed relevant here.

I totally get what you're saying, because I fall in a similar category.

[kareng]

If I remember, this topic came about because we had a " Take the burger off the bun" type of dieter. I think it was actually beer. I am not in favor of a section for gluten-free Dabblers. The NCGS people on C .com are here for the same reasons that Celiacs are here - because they have very real issues with gluten.

[BlessedMommy]

^Exactly!

[GottaSki]

Yes, they have very real issues with gluten but often have very separate issues from those with a diagnosis in dealing with their ambiguous status -- of course this comes from the perspective of a MamaBear that has had to defend her cubs that tested negative -- so don't "really" have an issue with gluten so others need not be careful around them.

[BlessedMommy]

Yes, yes, and yes!

 

That's the main reason that I hate not having a DX is because I have to defend and explain why I need to be so careful. I also hate all the stuff circulating around about gluten free fads and so on, so forth. Because then people perceive that if you don't have a DX, you've jumped on the fad bandwagon.

 

I would give almost anything to have a "real" DX, but I wouldn't do another gluten challenge for a million dollars! 

 

There are a lot of psychological and social issues surrounding having to eat this way without a DX, that's for sure.

[GottaSki]

Yes, yes, and yes!

 

That's the main reason that I hate not having a DX is because I have to defend and explain why I need to be so careful. I also hate all the stuff circulating around about gluten free fads and so on, so forth. Because then people perceive that if you don't have a DX, you've jumped on the fad bandwagon.

 

I would give almost anything to have a "real" DX, but I wouldn't do another gluten challenge for a million dollars! 

 

There are a lot of psychological and social issues surrounding having to eat this way without a DX, that's for sure.

 

Exactly why I think Paul's idea has merit. 

 

I don't see it as excluding folks without a celiac card -- I see it as a place where we can talk about these frustrations without giving the entire back story/status.

[FruitEnthusiast]

GFinDC, what you say about the site being accepting NCGI members is true. Still I (obviously) feel somewhat like an outsider to some degree just because the site is called celiac.com. I guess I have to get over that. Your idea was intended to be more inclusive of NCGI members and others without a dx, like myself, so I appreciate it.

 

GottaSki, I didn't realize one of your kids was NCGI, so you can really understand my perspective. You make a good point about alerting people about testing in time for a dx. It would be nice to spare others from ending up in the same boat as me.

 

BlessedMommy, thanks for understanding. I wouldn't do a gluten challenge for anything either. I didn't realize how emotional I felt about being a NCGI on a celiac site. I think somehow I'm afraid someone will eventually tap me on the shoulder and say, "you don't really belong here".

 

LauraTX and kareng, thanks for including NCGI in the serious category and affirming my existence here.

[BlessedMommy]

GottaSki, thanks for giving out good information about getting a DX. That could spare more people from the frustrations of being undiagnosed. 

[BlessedMommy]

And I hope along with you, that the medical community gets onto the idea of doing a petri dish endoscopy some time in the future. It makes logical sense that if you put gluten into a dish with intestinal tissue, that if the person is a celiac, you should see damaged villi on the tissue sample. And in that case, there would be virtually no false negatives or false positives, nor the need to subject oneself to a painful gluten challenge. 

[nvsmom]

I think a section on NCGI would work nicely. They have the same responses to gluten that the celiacs do, just minus the intestinal damage.  They are 100% gluten-free just like the celiacs. I think if we could set it up as a gluten-free NCGI thing it would work.  We would have to make a point that it is not a "gluten-light" board though - it's not for people who are cutting back on gluten for wahtever reason, it would be for people who have cut gluten out of their lives completely.

[BlessedMommy]

I think that a lot of people on here don't fit neatly into either category. Because medically speaking NCGI only applies to individuals who have ruled out celiac disease as a possibility. 

 

But I think that NCGI people could comfortably fit with people who have to live indefinitely with no confirmed diagnosis (i.e. neither confirming nor ruling out celiac) because the issues that they will live with are much the same.

[GottaSki]

I think a section on NCGI would work nicely. They have the same responses to gluten that the celiacs do, just minus the intestinal damage.  They are 100% gluten-free just like the celiacs. I think if we could set it up as a gluten-free NCGI thing it would work.  We would have to make a point that it is not a "gluten-light" board though - it's not for people who are cutting back on gluten for wahtever reason, it would be for people who have cut gluten out of their lives completely.

I agree with Nicole....I am not suggesting a place for gluten-free trend followers.

Gluten has serious consequences for many without an official celiac card ... Talking about these issues within the topic of NCGS makes sense to me.