How Has The Forum Helped You?

[CarlaB]

In another thread it's starting to go in the direction of how regulars have been a help to newbies and how some of them have gotten away from posting as often regarding new questions. I thought it might be motivational to get us back on track answering people if we posted how the forum has helped each of us. It will make us all realize how important it is to answer new questions, even if they're the same ones over and over! We all need to stick around even though we ourselves might not be "getting anything out of the board." When your learning from the board switches over to teaching new people, you're just giving back what you received, or as Patti said on another post, paying it forward.

One reason that several have given for not answering questions anymore is because people disagree. I think it's fine to disagree, but I think it will show in your post and that it's not necessary to point it out that you disagree. I find that it's a help to me when people do post conflicting information as some of this isn't black and white, and I appreciate knowing where the uncertainty lies.

So, regulars and newbies alike, how did the board help you most?

For me, I don't feel like I'm the only one out here living like this. Since no one I know has these dietary restrictions, it's nice having the support of knowing I'm not alone. I also like hearing about everyone's way of living the gluten-free lifestyle -- how to order out, how to cook at home, etc. I truly don't think I could have become 100% gluten-free without the forum.

[ArtGirl]

If I hadn't found this board I wouldn't have known about all the hidden gluten and wouldn't have been successful in trying to stick to the diet. It helped me tremendously to read other's journey into this G.F. world. I also am now more serious about my other food sensitivities and because of this am well on my way to getting well.

And, it's been a great resource when trying to decide if something or some place is safe - someone else most likely has been there, done that, and knows if it's safe or not.

[jerseyangel]

Great idea Carla!

I literally stumbled onto the board last year while researching an ingredient. I couldn't BELIEVE that so many other people had the same issues as I did.

I had no idea how to post or even send an email at that time Had to ask my son! All I knew was I had to be a part of this.

Gosh, just about everything I know about living with Celiac, I learned here. From cross contamination issues to checking my personal care products--the potential hazards of eating out to knowing that my lengthy recovery was completely normal.

Learning about other food intolerances from Ursula and others was invaluable.

I'm sure I'm forgetting a lot here--suffice it to say that when my doctor told me to "begin the gluten-free/lactose free diet and see me in 6 months", I'm thankful that I had all of you here to point me in the right direction

[Guhlia]

There are probably too many things to list for me... Here are a few of the biggies:

1. I learned that there's a whole host of other people with this disease, and I am really not alone, no matter how alone I sometimes feel.

2. Cross contamination is a BIG deal and I never would have realized this without this forum.

3. Hair and body products have to be gluten free. This is probably why I didn't recover 100% quickly.

4. I have a VERY hard time picking up the phone and calling a company for gluten status on a product. This message board has really broadened my dietary choices because I never would have called all those companies on my own, NEVER.

5. You all have kept me out of tears on multiple occasions, both gluten related or not. This forum consists of some of the most generous, caring, sensitive people I have ever had the pleasure of meeting. I will probably never meet most of you, but many of you are far greater friends to me than those that I see on a regular basis. The support you have all provided has made a tremendous difference in my life.

6. This forum has also opened my eyes up to symptoms that I didn't realize I had, which helps me to determine glutenings. I don't always get the severe GI issues, but I have now discovered other symptoms that lead me to believe I'm a LOT more sensitive than I originally thought.

[Rikki Tikki]

When I was diagnosed my doctor told me just to stay gluten free and in a year I would know more about it than he did. I didn't even know where to start. I typed in gluten free and came up with the old celiac site Scott had, and it literally saved my life. To know there were other epople out there meant more to me than I could ever say. People have not only supported me on this gluten free journey but also in other aspects of my life, answered questions I would of been uncomfortable asking people I know, (how sad)

To have a resource that told me if a food was gluten free, that I can eat out at some restaurants, it has just been wonderful, you are all a great group of people!

[Lisa]

I've learned more about ALTOIDS, than I thought possible

[Guest ~jules~]

When I was diagnosed I had no idea what celiac, gluten, any of this was. I was told I had it, and sent home with a piece of paper telling me to start a gluten free diet. Well after discovering online how unrecognized it is, and that theres almost nothing in this town to lean on, I found this board. I am not a doctor, I know very little about the medical world, I have never been sick in my life or had any problems until this hit me hard. So to the point here, this board taught me about cc, hidden gluten, and its helpful for spur of the moment questions when I don't feel like researching anything, I'm a busy mom it gets old. For the most part I feel I have been completely helped by this site, with only a few occasions where I felt I wasn't at all. I pick and choose what I read, what I ask, and the advice I give, as I don't really know what I'm talking about quite yet! My feelings on the racy threads around here are basically if people want to eat each other alive, you know whatever floats your boat. I choose not to take part cuz thats just not my style. So thanks for all the help!!

[marciab]

WOW !! If this board wasn't here, I would still be very sick. I have learned everything I know about gluten free eating here. The emphasis on sticking to the diet and watching out for cross contamination has really kept me from getting too discouraged. thanks ... marcia

[Lisa]

I've learned more about ALTOIDS, than I thought possible

Sorry Carla, but I just could not help myself.

[oceangirl]

When I was diagnosed I had no idea what celiac, gluten, any of this was. I was told I had it, and sent home with a piece of paper telling me to start a gluten free diet. Well after discovering online how unrecognized it is, and that theres almost nothing in this town to lean on, I found this board. I am not a doctor, I know very little about the medical world, I have never been sick in my life or had any problems until this hit me hard. So to the point here, this board taught me about cc, hidden gluten, and its helpful for spur of the moment questions when I don't feel like researching anything, I'm a busy mom it gets old. For the most part I feel I have been completely helped by this site, with only a few occasions where I felt I wasn't at all. I pick and choose what I read, what I ask, and the advice I give, as I don't really know what I'm talking about quite yet! My feelings on the racy threads around here are basically if people want to eat each other alive, you know whatever floats your boat. I choose not to take part cuz thats just not my style. So thanks for all the help!!

This is a nice idea, Carla. I am fairly new and found the board quite by accident somewhere around April '06. It has been of invaluable help in myriad ways and I'm feeling VERKLEMPT as to how to specifically express it! Certainly, knowing others out there struggle with knowing what the heck to eat, that others have to obsess about their digestive tracts, that others have lived in great pain and/or discomfort whilst they walk around in their daily lives with most of the world unaware of their drama... Good ideas on what to eat, what cosmetics to use, how serious the cc issue is (never would have believed it until I lived it) and so much more! Not to have to call EVERY company because someone has already done that legwork, not to feel like I'm a hypochondriac or clinically insane because NO ONE ELSE MUST LIVE LIKE THIS!!! And, foremost, to be reminded, here on the "pain plane", that we are all the "walking wounded" and to remember this truth every day in all my interactions with whoever may cross my path. Lord knows what ill someone else may be wrestling with- the checkout lady, the guy that cuts you off in traffic and flips you off, the road rager...on and on. Everyone suffers. It's important to remember. And to reach out with a kind word or gesture if you can. Every day in the here and now. I thank everyone on this Board for sharing their information and a little piece of themselves.

sincerely,

lisa

[CarlaB]

Sorry Carla, but I just could not help myself.

Gave me a good laugh! That was my aim, to cheere things up around here!!

[jerseyangel]

Gave me a good laugh! That was my aim, to cheere things up around here!!

You had to know that the "A" word would appear sooner or later!

[Ursa Major]

Almost a year ago, in October, I suddenly realized that BREAD was making me so sick. When I put celiac disease into the google search engine, this site came up. After reading Scott's info, I knew I had all the symptoms of celiac disease, and eliminated gluten.

Then I came onto the forum. Within a week somebody posted a link on lectins, so I cut those out, too. I was almost angry when Rachel_24 posted a link on salicylates, and realized that I can't tolerate those, either! But I am really eternally grateful for finding out, because I don't need painkillers any more for the fibromyalgia.

And now with Carla posting about burned out adrenals (NOT altoids ), I found out that I have that problem, too, and will be treated for that (well, you really have to mostly treat yourself). There is hope for me to get better after all!

I also would NEVER have figured out about personal care products or cc or a myriad of other problems without the support here. It's amazing what I've learned in these 11 months.

And that's the way it is when there are so many people, researching so many things because of different health problems we all have (besides being intolerant to gluten, or because of it, really). Together we have SOOOOO much information to share with each other. If one person can't answer a question, somebody else usually can. And even the people here who know so much already, and can pass on their knowledge, we are still all learning at the same time.

I also can't believe the emotional support I get here. What would I do without you guys! Also, being allowed to be a moderator, and helping others, helps me as well. Knowing that maybe I have helped a few people figure things out, or even just given them the support they needed at the time they needed it, makes me feel better about myself, too.

[AndreaB]

I had started out researching wheat and gluten allergies and found this site. I learned of enterolab and did their testing. I have learned everything from this board. I was one that didn't have obvious symptoms before going gluten free but do know if I get glutened now. It's interesting to learn about other intolerances and situations that others are dealing with. I step in to help when I can, sometimes I'll just say hi and give a cyber hug. I've made some good friends here that I wouldn't have otherwise. I get to have some adult conversation which is always appreciated.

I'm thankful for the time and attention everyone contributes to this forum. It wouldn't be what it is without loving, caring people. Yes, there are many different beliefs and thought processes but this forum would be pretty boring (and the world) if we all believed and thought the same. As a conservative christian, this board has taught me to accept others and their beliefs more than anything else. Thank you for that. I have stepped out of threads that have gotten heated and do wish that people would accept others beliefs and opinions. I try not to offend people or get into debates with anyone. I usually just post what I think or have read and leave it at that. Those who know me on this board know that I just say whatever I have to say, no matter how short it may be. A few have nicknamed me "Mother Hen"......right Carla. No, she didn't give me that name but it has stuck.

[CarlaB]

A few have nicknamed me "Mother Hen"......right Carla. No, she didn't give me that name but it has stuck.

Right, I just call you in when there's bickering ... not into a serious thread or serious bickering though. It's fun to have fun with all of you, too. Sometimes it's lonely being sick and here everyone understands ... with a laptop, you can even be having a really bad sick day and still have someone to visit with!

[burdee]

When I first suspected I had celiac, I turned to this board for answers to my MANY questions about safe foods, symptoms, etc. I ALSO learned about Enterolab through this board. Because my symptoms were excruciatingly painful intestinal cramps (plus irregularity, bloating and cramps), I refused to eat gluten just to take a blood test. So I was happy to find Elab tests.

As I learned to cope with my gluten/dairy/soy intolerances, I appreciated posts by people who focussed on SOLUTIONS, rather than wallowing in their problems. I know everybody goes through a grieving process when they first learn they can't have favorites, but I really wanted to move on to learning how to cope with 3 food intolerances. I especially loved recipes and product information posts.

Because I also lead a local celiac support group, I like contact with other support group leaders through this site. I also refer all new group members and newly diagnosed celiacs to this site

Finally, after recent ELISA tests showed I also have egg and cane sugar allergies, I returned to this board to exchange recipes and product information. This board helped me stay focussed on all the foods I COULD eat, rather than feel overwhelmed by 5 food intolerance/allergies.

BURDEE

[Rachel--24]

How has this forum helped me?? Where do I even start??

I just love this board and all of the wonderful supportive people I've met here.

When I first joined I was scared and very sick...whenever I posted a question there were always lots of responses...so many good people giving their time to help the newbies. I dont think there is a better place for someone to learn the ins and outs of the diet....this board was and still is my greatest resource.

I found out about Enterolab my very first visit and ordered the test that same day...I'd already been gluten-free for awhile and was so happy I could still get tested. I also learned about cc, cosmetics, shampoo, pet food, etc. These are all things I probably never would have considered had it not been for the people here.

When I'd absorbed all the info I could and read all the books I could find (Dangerous Grains is my favorite) I found that I'd learned so much in a short amount of time. I found that I was then able to answer the questions of the new members and I started to "pay it forward". I never forgot what it was like to come here looking for answers and how great it was to find a board that was not only helpful but filled with caring people as well.

I've kind of slacked off in the past few months. I'm not really responding to the newbies the way I used to and I'm aware of it. Its mainly because my head has been elsewhere...I'm still trying to get a diagnosis for whatever else is wrong with me. Once that happens it'll be a load off my mind and I'll be back to my old self. I've been really focused on that and as usual this board is where I get the most support.

The board has ultimately brought me much more than just the knowledge I aquired about the diet. The support I've gotten here has helped me more than anything else this past year. This board has brought me laughter and friendship. I come here and I find strength to continue my fight to get better....thanks to all of you.

Yeah...sometimes things get a little crazy and sometimes people dont get along but I choose to look at the POSITIVE things that I encounter here everyday. There is much more GOOD than there is bad and I feel like sometimes those things arent awknowledged....so Thanks Carla for this thread.

[ianm]

Of course Altoids is the single most important aspect of celiac. Without that magical little candy life just wouldn't be very much fun. I don't get to hang out here very much because I have so many demands on my time now. With the help of this forum I was able to get healthy and get a much better life. I had lost my marriage and almost lost my job because of gluten. Now I make a six figuire income and am rapidly climbing the ladder. Ironically it was my ex-wife's big mouth that led to my girlfriend and I getting together. It turns out that celiac was the best thing that ever happened to me because I had to change everything about myself.

It is hard to keep up with the newbies because there are just so many new ones signing on everyday. When I first found this site there were only a few thousand members and only a handful that posted regularly. There was not nearly the volume of postings there are today. I was gone for a few days and when I logged in there were 27 pages of unread postings.

[jennyj]

This site is like an extended family. You can come in here and ask questions and not have to worry about anyone making fun of you or treating your concern as insignificant. The first day I posted here I was overwhelmed by the resposes I recieved from people who didn't even know me. I honestly do not know how I could have got through the last 6 months without this site. It was ironic the number of times I would wonder about something and someone else would post the exact question. I have found recipes, books, humor, and assurance here. Although I don't know about Altoids but that was before my time

[Green12]

I had already been gluten-free for quite a while before stumbling onto this board, but I have learned so many things here that I don't think I would have on my own about a gluten-free lifestyle. I've also met a lot of great people here that are struggling with similar health problems, and it's been a great source of information and support.

[Ursa Major]

This site is like an extended family. You can come in here and ask questions and not have to worry about anyone making fun of you or treating your concern as insignificant.

Yeah, that another thing. No matter the question, nobody treats you like you're stupid for asking it. There is no such a thing as a stupid question on this board. It's so nice.

[Kaycee]

This forum has helped by letting me know that I am not the only one in the world with coeliac.

It has given me the permission to do what I need to do to get better. So when people look at me strangley (like when I bring my own coffee to work), as if I am a little quirky, it does not bother me so much, as I know I am doing it in my best interests, even though it looks eccentric to others. I no longer worry what other people think.

What helps is knowing there are plently more similar to me in all corners of the world and some of you will be doing the same little things that I do.

Cathy

[gfp]

What a great thread!

[aikiducky]

Ursula, I just wanted to let you know that you have already paid it forward! It was after reading a link in your sig about lectins that I realized I'm sensitive to some of them (legumes, nightshades and eggs) and cut those out. It explained some mystery "glutenings" I kept having! I've since been able to reintroduce moderate amounts of eggs and potato starch, so I can have the occasional gluten-free baked treat... I hope you might also, some day...

I was already ok with my gluten free diet when I joined, but it's so nice to have people to talk with who have the same interests that I do, like the quality of one's poop!

If I may make a suggestion to all the busy people here? Don't make it a goal to read all of the discussions, and don't feel bad if you miss things! Sometimes I don't stop by for a few days, and then I just read the latest posts, and maybe answer one question. That way I hope maybe someone somewhere gets an answer they need, and I trust that there are enough people here to answer the rest...I think this is better than deciding that "I can't keep up with it all so I won't post at all"!

Pauliina

[Guest nini]

without this board I wouldn't have known about the ingredients in my daughter's favorite cereals changing... (good thing too because I have a bad habit of not remembering to read labels every time once I find a safe product) now I've learned I do need to read labels every single time no matter how many times I've bought this very same product.

when I first joined I was already in the mode of wanting to help others with this from all the research I had done on my own, but it was so nice to be welcomed into a group that really cared about helping each other learn to live with this crazy thing called Celiac.