Catch Y'all Later.

[gfp]

I think a diagnosis, self or other, can support a closed mind and that it is important to stay open to the possiblity that more is going on than we understand.

When I came to this board I presented all of my digestive problems and received support and confirmation that quite likely it was Celiac and so I proceeded down the gluten free path. It has been very helpful but I am still ill and it is not only Celiac. What concerns me is that I see people being supported to explore being a Celiac but not being encouraged to explore all the ways in which their bodies are breaking down, if in fact they are breaking down.

I feel part of the Lyme fooferaw which I suspect is some part of the "this board is ..." feeling although honestly, don't boards just change? And just as when I first understood about Celiac I was living in Celiac world now I am living in Lyme world, LOL and as an aside, IMO for all that Tailz was ala Steve Martin a "wild and crazy girl" she might just also be right about Lyme. I am on the diagnostic path with that, with a real doctor (who thinks I may have Celiac and Lyme) and may have more to say later but may also largely move on. I find it painful now to read the newbie threads and see myself and know it is inappropriate to scream "LYME" at them but at the same time I'm alarmed at how much confirmation they are getting in the Celiac diagnosis. I would like to see them encouraged to keep an open mind to what is going on with their bodies and to keep asking questions.

rinne

This is a very good point.....

When I was a noobie and first diagnosed I really thought I was gluten-free..... I wasn't and people kept telling me don't trust processed foods .. don't believe about cosmetics not hurting .... and mostly about CC and hidden gluten I was wrong and they were right....

If it hadn't been for these people I might still be ill

As for Lymes ... yes I think its a distinct possibility along with quite a few others (adeno virus, h. pylori .... and probably a few we haven't discovered yet) and its chicken and egg.

and talking about egg... yes a few people might end up with it on their faces over Lymes and celiac disease.

[rinne]

When I was a noobie and first diagnosed I really thought I was gluten-free..... I wasn't and people kept telling me don't trust processed foods .. don't believe about cosmetics not hurting .... and mostly about CC and hidden gluten I was wrong and they were right....

Yes, I found this extemely helpful too. And thank you for supporting what I said, I hesitated to say anything because I do not want to be critical but I hope to open the diagnostic question up for newbies. With all the things going wrong with me even though much of it may be gluten related and resolve over a longer period of time than just the five months that I have been gluten free I am afraid that I do not have the time to trust that it is only Celiac, as if that wasn't way more than enough.

[AndreaB]

Rinne, gfp and others.

I also agree that we need to encourage people to continue to try and get to the bottom of their health issues. Yes, this is a celiac board and that is the main thrust of finding what is wrong. Many other things are also made worse by gluten. I have no knowledge of other illnesses but will keep in mind trying to tell people to start with celiac and if there symptoms do not resolve after awhile to continue searching other diseases it could be. I try and support people in whatever even though I haven't been through it.

[rinne]

Many other things are also made worse by gluten.

Andrea, I think this is an excellent point, but then I share it so of course I would think it excellent.

I'm reminded that the blood type diet for arthritis recommends everyone avoid wheat. It is not just Celiacs and gluten intolerant folks that benefit from omitting wheat, particularly the highly processed products.

It is a great first step for anyone to take when needing to understand why they are not well.

[Guest Kathy Ann]

[rinne]

I can't speak for anyone else but personally I am not disgusted by anything. I just figure boards change, people come and go and with that coming and going different issues arise, sometimes it is easy and sometimes it is not.

[CarlaB]

Kathy Ann, I didn't have a problem with anything either. People get off topic sometimes, and that's okay. There are a lot of personalities on a board like this, it's a very limited method of communication so sometimes people take things wrong, and I think any problems came from those facts.

[AndreaB]

Kathy Ann,

Sometimes some threads get heated but if you don't like that kind of stuff you can just ignore it and not go into it. I think the main point was to remind those who have been here for awhile that we need to stop bickering, accept people positions on a subject and support the new people coming on board. This board has grown in leaps and bounds even since I came on. The sheer numbers makes it hard to respond to everyone and some new people are not having their questions answered in part because of some of the more experienced members being tied up in discussion threads and such.

I tend to avoid the threads that have bickering but do like the ones that you can chat. This thread has been a reminder to me to not get lost in chats and to spend some time looking for new members questions.

Don't worry about going off tangent. Sometimes those are great ways to learn something new.

[Rachel--24]

I can't speak for anyone else but personally I am not disgusted by anything. I just figure boards change, people come and go and with that coming and going different issues arise, sometimes it is easy and sometimes it is not.

Rinne,

I couldnt agree more....I feel exactly the same way about all that you've written here today. I couldnt have said it better.

I'm happy with the board and I dont "expect" it to be perfect at all times. Of course there will be conflict now and then....people come and go and just like in the real world...things change.

I'm on the same path as Rinne...diagnosed Gluten Intolerant (no Celiac genes), my health improved tremendously on the diet but then declined. My doctor is now suspecting Lyme Disease and I've been tested...the results arent in yet.

I could have taken the advice of ...."be patient...it takes a long time to heal from the damage, etc"...however, my mind and my body were telling me something else is not right here. I've been searching for answers for several months now. I often see people post who seem to be in the same situation I'm in and not recovering simply from eliminating gluten. Its not always that easy...in some cases there are other things going on as well.

If a person doesnt find they are healing as they should on a gluten-free free diet...by all means they should pursue further testing. This doesnt mean they should forget about the diet....it means they should look for "additional" causes for remaining symptoms.

I dont much agree with the feeling that if a thread doesnt have anything to do with the gluten free diet that it takes something away from the "feel" of the board. There are many people here with other conditions, multiple intolerances, autoimmune diseases, etc....these people should feel comfortable to ask questions relating to other illnesses which may be common among other Celiacs. The main purpose of the board is to offer SUPPORT.

If I do test positive for Lyme...I certainly wouldnt be shouting LYME DISEASE to every new member with a question....however, if someone is looking for answers and they seem to be going down the same path I've been on for 4 years now....you bet I'll suggest they get tested. I think its the *right* thing to do....I'll offer help in every way I possibly can.

I got to where I'm at primarily from the help and advice of others...people who've shared their experiences with me over time. I absorbed all the info. I was given and it has helped me in so many ways. I hope to do the same for others.

While I'm sad to see someone like Penguin leave the board I just dont have the same feeling that she has about this site. We *all* make the board what it is...if there is a desire to make positive changes then we are the ones who can make those changes. From time to time there will be periods of controversy...I've seen it on every board I've been on...it happens. The best thing we can do is to let it go....we really dont need to drag it out for weeks and weeks afterwards. There are new people joining the board everyday...they have no idea what we're talking about. If they see or feel "negativity"....thats because *we* are creating that environment by carrying on about things that are done and over with. I dont know anything about "conspiracy theories" or anything else. I only know of one member who was not following the rules of the board and was consequently banned from the site. Maybe I missed something but thats all that I'm aware of.

If someone is in total disagreement with threads involving alternative healing or anything else....perhaps they should just skip those threads entirely??? This would go a long way in preventing disputes among board members.....just my opinion.

[rinne]

Thank you Rachel, right back at you.

I do appreciate the reminder in this thread that newbies need support and will make an effort to contribute to welcoming them.

[Rikki Tikki]

I agree with you Rachel, but then I live in your town! Personally I like that some of the threads make me laugh, as far as any other ones we always have the option of ignoring them if we don't like what is being said.

[gfp]

If someone is in total disagreement with threads involving alternative healing or anything else....perhaps they should just skip those threads entirely??? This would go a long way in preventing disputes among board members.....just my opinion.

Rachel, I agree right up to here but I think there is a point that these can degenerate into something wholy dangerous.

Its one thing to pray for someone to get better and another to try complimentary things but when these advocate extreme and damaging measures its another. This includes when MD's say stupid things like "Why not just try gluten again" ... but also views like "if you only eat organic wheat" etc.

In an extreme case these lead to madness .... its only a couple of years ago a nun was cruxified to death in Eastern Europe casting out demons... its a regular event in the UK that certain immigrant communities torture children to death casting out demons ...

My honest opinion is I don't want to be a part of something leads to hurting someone else and I have a moral obligation to not ignore this.

Now I realise that I personally have an errant "factual correctness gene" so I'm apt to jump in way too early but equally others have errant "political correctness genes" or "anti-conflict genes" that prevent them jumping in even when its harmful.

Of course we are all mixed up and I think that therefore these things balance out ... but I jusat wanted to express my 2c... on that.

[eKatherine]

I'm new here. What exactly is it that everyone is disgusted with? I don't read everything, but are we getting off on irrelevant tangents or what? Just want to make sure I don't do it too. It wouldn't be intentional if I did. Enlighten us newbies.

The problem is that when a question arises on the board, members offer help based on their own experience. In fact, experience varies a lot, and interpretation of observations for any one individual may not be applicable to anyone else, or may be preliminary - later might be shown to be incorrect with better testing, etc. So some of the more challenging threads ended up with lots of contradictory advice.

[Rikki Tikki]

The problem is that when a question arises on the board, members offer help based on their own experience. In fact, experience varies a lot, and interpretation of observations for any one individual may not be applicable to anyone else, or may be preliminary - later might be shown to be incorrect with better testing, etc. So some of the more challenging threads ended up with lots of contradictory advice.

As it is with life. Most of our reactions to things is based upon our experience. I think that this site is based upon what each of our experiences are, or our observations or our thoughts. Just as with this disease as time moves on more advances are made. I bet in 10 years we will look back at some of what is posted here and think, can you believe we really thought that way?

[CarlaB]

I don't know about everyone else, but it's people's experiences that I'm looking for!! It helps me to know how different people found their own way to be healthy, even if it's not the same as mine! I read through the information, take what applies to me, and sort it all out myself. It never bothers me that there's conflicting info -- some are sensitive to dairy, some are not, some have other food allergies, some have Lyme disease, etc. I find it all helpful, and not confusing even if it's conflicting. No one's wrong about what worked for them, it just might not be the same for everyone.

[jerseyangel]

I don't know about everyone else, but it's people's experiences that I'm looking for!! It helps me to know how different people found their own way to be healthy, even if it's not the same as mine! I read through the information, take what applies to me, and sort it all out myself. It never bothers me that there's conflicting info -- some are sensitive to dairy, some are not, some have other food allergies, some have Lyme disease, etc. I find it all helpful, and not confusing even if it's conflicting. No one's wrong about what worked for them, it just might not be the same for everyone.

I agree! After all, *most* of us are not doctors or health professionals. The best we can do is give others the benefit of our experience, or share information. If something dosen't apply to or interest me, I simply skip over it.

We're also building a great "library" of information for newbies and everyone to refer back to

[key]

Rinne,

Well said, I don't think we need to complain about the board. I think people expect it to do too much for their lives sometimes.

There are alot of different personalities and sometimes there will be things you disagree with and maybe don't like, but I just choose to read what I want and "try" to avoid the heated topics. I think after awhile when people have been here SO long, it gets a bit tiring answering the same questions. I still try to share my experience when I can and answer as much as I have time for and feel that I have something positive to give.

I learned SO much here and this was the first site I came too. This is how I found out my son and I had celiac disease. This board is still helping the newbies.

Kaiti,

All your help has been greatly appreciated!! When I first came here you were SO knowledgeable.

Jenvan,

You also have helped SO many people with your encouraging posts.

There are SO many other's that have been wonderful here!

Monica

[tiffjake]

So....back to the point, see ya later Chelsea! Had fun on my birthday, thanks for coming with me! Hope you are doing ok, and kitty too! See ya around here before too long, I hope!

[hineini]

Chelsea,

My honest take, as a relative newbie: I found people here very welcoming, and encouraging. The board made me feel like I was less crazy. But it annoys me, too.

I have suffered so many health problems in my life that have been mistreated, misdiagnosed, etc (most recently two ruptured discs that no one bothered giving me an MRI to diagnose until 5 years after the injury despite complaining of intense sciatica and back pain for all those years! oy!).... So yeah, I'm pretty skeptical of the medical profession. But I am just as skeptical of "alternative" medicine. I go to a mainstream western doctor, and also to acupuncture. I take prescription drugs, but I think allopathic medicine is too quick to look only at surface symptoms and to prescribe meds. I take herbs, but think Dr Mercola's bunk. So, I appreciate hearing both extremes of opinions on this board and also the perspectives of people who, like me, think EVERYTHING must be considered critically and researched before making decisions. (The FDA's approval doesn't make something safe, nor does a naturopath's prescribing it, nor does a whole bunch of people on a bulletin board saying it is!)

However, as time as gone on... I've been frustrated with people giving out medical advice when they have no medical background... giving BAD medical advice when they DO have a medical background... "diagnosing" people over the internet... being incredibly paranoid and blaming everything on celiac disease... never weighing the possibility that there's something else going on with their health, or other ppl's health, besides gluten... telling anyone and everyone who comes on the board who is even investigating the slight possibility of being gluten intolerant that they must stop eating all gluten NOW (as if every problem can be traced to celiac disease or gluten intolerance)... Simple questions getting derailed into philosophical debates... No one calling out people who give out dangerous or uneducated advice...

I'm not remotely scared of conflict or telling people off, and I've been on drama-filled bulletin boards before. So that's not an issue for me. My challenge is trying to weed through all the crap to find the stuff that's actually legitimate and has some substance to it.

So now I'm mostly reading the threads about baking, dining out and what foods are safe. Those are the threads that are most helpful and practical and least likely to contain the problems I listed above. I find I am much better off when I take everything with a grain of salt, disregard questionable information, and only read the threads that are relevant to me.

The benefits of this board outweigh the problems, for me. I don't let things bother me too much. As with most bulletin boards, it's a mixed bag. I hope I can be educated enough at some point to help the newbies out the way some of you all have helped me... Not with propaganda or judgment but with coping techniques and solid information. And it feels good when I do get to help someone else out, with a recipe or info or just some emotional support.

Sorry to see you go, as I appreciated your perspective. Take good care of yourself always!

[Rikki Tikki]

Hineini:

I think your statement is rather unfair. Many of us give our advice, and it's only advice based upon our experiences and none of us have even hinted that all of someones health problems are celiac related. One must research, just as someone that was posting everything was Lyme related, it is only their opinion and I would as a responsible adult check into that avenue if that is what I thought, or if I wasn't getting any better.

If I remember right you are quite young. Many of us were very ill for many years before diagnosis and so we approach the medical profession with some warriness.

I think the wise road is to always take what you read of other peoples post with a "grain of salt" anywhere on the internet, not just on this site. For me, if I could of saved myself all those years of being sick by listening to just one person or had looked up celiac myself, or even known about it I would have gladly.

Will I warn people to check everything for hidden gluten, you bet I will. Whose to say that what someone else writes is crap? Anyone reading anything on the internet should always investigate what they read. I can't imagine that anyone would blindly follow advice and not be responsible for their own choices.

I think part of it is as I said, we were sick for a very long time so when someone posts what we think is bad medical advice, such as a little gluten won't hurt you, we tend to jump in there. And yes, I have seen that advice given to people on this site from their doctors.

I would hate to think that people would be afraid to post their "thoughts" or experiences for fear of being made to feel like their opinions were not valid

[Lisa]

Apparently, I missed somethings on the recent posts, but don't feel that I need to spend too much time there.

I wanted to make a point, that this board if for all, who have been efflicted by Celiac. It is for support of the old ones (I'm getting close) and the newbies as well.

Celiac DOES not end with a diognosis, or a diet change. With hope it will be secured for further damage.

Is there hope here for me as the diognosis continues to morf into other issues, that as others have gone before me, could offer support.

Hey, as I continue through this avenue of my life, I am open to suggestions and I can choose them or loose them. I am a smart person. I can do my own research and I can make my own judgments and I can also ask qualified people as I choose are qualified. My life is in my hands and my hand alone.

(disclaimer: I browsed through alot of recent post, which were enough for me to make the precededing comments. If I am on the wrong road on this thread, I appoligize. But I read enough that I thought it important that I should post my thoughts, which are directed to no one in particular, I don't even remember names, nor the source of comment.)

Lisa

[Lisa]

Apparently, I missed somethings on the recent posts, but don't feel that I need to spend too much time there.

I wanted to make a point, that this board if for all, who have been efflicted by Celiac. It is for support of the old ones (I'm getting close) and the newbies as well.

Celiac DOES not end with a diognosis, or a diet change. With hope it will be secured for further damage.

Is there hope here for me as the diognosis continues to morf into other issues, that as others have gone before me, could offer support.

Hey, as I continue through this avenue of my life, I am open to suggestions and I can choose them or loose them. I am a smart person. I can do my own research and I can make my own judgments and I can also ask qualified people as I choose are qualified. My life is in my hands and my hand alone.

(disclaimer: I browsed through alot of recent post, which were enough for me to make the precededing comments. If I am on the wrong road on this thread, I appoligize. But I read enough that I thought it important that I should post my thoughts, which are directed to no one in particular, I don't even remember names, nor the source of comment.)

Lisa

Correction: Celiac Disease can be corrected with the proper diet as a must, and it can reverse intestinal damage by diet controll, but it MAY develop into other autoimune issues if not taken into control.

[lorka150]

Correction: Celiac Disease can be corrected with the proper diet as a must, and it can reverse intestinal damage by diet controll, but it MAY develop into other autoimune issues if not taken into control.

really? i'm not correcting you, i am truly asking - perhaps gluten intolerance can, but celiac disease cannot be cured...i thought?

the rest of your statement makes sense to me (can reverse damage, and so forth), but what do you mean by corrected?

regarding the rest of the post - i felt this forum and board was helpful for the most part as i realized that wasn't fabricating symptoms, pre-diagnosis. however, like any other board, it has it's cliques, and people just need to realize that's what happens when people spend 'time' together. not being 'in on everything' might bother some people.

[eKatherine]

As it is with life. Most of our reactions to things is based upon our experience. I think that this site is based upon what each of our experiences are, or our observations or our thoughts. Just as with this disease as time moves on more advances are made. I bet in 10 years we will look back at some of what is posted here and think, can you believe we really thought that way?

You misunderstood my observation. What I was saying is that a newbie may ask a question that has a relatively straightforward answer, and several other relative newbies jump in and say, "I'd guess it's..." but their guess is just plain wrong. By the time someone comes in with correct information, they are already being drowned out by the noise level.

[gfp]

You misunderstood my observation. What I was saying is that a newbie may ask a question that has a relatively straightforward answer, and several other relative newbies jump in and say, "I'd guess it's..." but their guess is just plain wrong. By the time someone comes in with correct information, they are already being drowned out by the noise level.

I'm sorry to have to agree with that statement.....but its absolutely spot on.

Simple questions getting derailed into philosophical debates... No one calling out people who give out dangerous or uneducated advice...

and I think this is spot on but its a symptom......(I moved that bit from the end of the quote)

However, as time as gone on... I've been frustrated with people giving out medical advice when they have no medical background... giving BAD medical advice when they DO have a medical background... "diagnosing" people over the internet... being incredibly paranoid and blaming everything on celiac disease... never weighing the possibility that there's something else going on with their health, or other ppl's health, besides gluten... telling anyone and everyone who comes on the board who is even investigating the slight possibility of being gluten intolerant that they must stop eating all gluten NOW (as if every problem can be traced to celiac disease or gluten intolerance)...

Yes and its all mixed up but the number 1 thing that people seem to miss as noobies after diagnosis is "that they must stop eating all gluten NOW" .... I was guilty of this myself... not deliberatly but through poor or more accurately half hearted research, especially combined with bad advice from my GI... noone told me about hidden gluten .... cross contamination was a far away thought....

I agree with the paranoia part.... BUT I think I know the reason and that is so many of us had peripheral problems that went away with a gluten-free diet. Things we never even thought could be connected..... however (and I think this is the big however) the problem is when you combine misinformation about hidden gluten and the fact many of us had peripheral problems then the best advice most of us can come up with is "Make double sure you're not getting CC or hidden gluten"

In all practicality the ONLY way to do this 100% is to not eat out and only eat fresh food you prepare from scratch.

never weighing the possibility that there's something else going on with their health

I don't think this is quite so bad...I think many people perhaps do.... but there are certainly many of us who do not....

As for philosophical debates on gluten.... I don't see any option.

People regualrly post that "all distilled alcohol is gluten free" .... one thing I am qualified to talk about is distillation ... and i know its not possible to guarantee and end point in complex systems....what you learn in grad school chemistry is an approximation .. it is not real life. When you weigh this with the fact a significant number of people do react then..... we have a philosophical debate.

My philosophy is simple: "If in doubt leave it out!" .. its my daily mantra.

So do I think its whole gluten in vodka.... probably not but do I think there is enough of something (sometimes) for some of us to react YES! So I can't in all honesty just quote high school chemistry and say "all distilled alcohols are safe".... (for a start I know several using non gluten-free colouring's)