The Best Advice Or Info About celiac disease You Have Gotten From

[Jnkmnky]

In light of recent arguments, let's each think of some advice or info you've received from a poster on this board that helped you deal with Celiac disease. It's not necessary to remember the poster's name if you can't. Just let others know the advice or info and make sure it came from someone here.

For me... I learned that Post Cocoa and Fruity Pebbles were gluten free *I have children.

Also, that chapsticks need to be checked and so does shampoo. Also, ordering on line from Kinnikinnick is safe and Chebe bread is great. Modified Food starch doesn't mean gluten.... check the source!!! Opened up a lot of banned food choices for us!

If I wasn't a member of this board, I don't know that I'd know these things.

Thanks everyone!

This thread has great potential for being a newbie resource!

[Canadian Karen]

If it wasn't for this board, I would not have even thought of getting my own toaster, checking my toiletries, knowing the hidden sources of gluten (licking envelopes, stamps, playdough, some medicines, etc.)

Also, I have to admit my main inspiration on this board and the person who has helped me get to where I am today is none other than our beloved celiac3270. It's no wonder he is so loved here........

Great idea for a thread, Jnkmnky!

Hugs.

Karen

[Rusla]

Skoki-mom: told me to go join the Celiac Association in Calgary, great advice.

And so many on here informed me that it is not just what goes into your body but on your body has to be gluten-free.

Everyone on here has something to bring to the table, experience, trials and tribulations and trial by error. It is great to get such help and greater to give it.

[StrongerToday]

In a word: KNICKIKNICK (even if I still can't spell it!). Great bread, the KToos, donuts... yum...

Non food related, would be to check everything. Never would have thought to check mascara, foot lotions, etc.

Non product related - and by far the most important - a group where I can ask anything (even about poop), look up a lot of information and know that I have friends supporting me, even if we've never met in person.

[VydorScope]

I knew nothing about celiac disease befor comming here... cant thank this community enough!!

[jerseyangel]

I have to say that most everything I learned about Celiac, the gluten-free diet and all that it entails, CC, dealing with relatives and friends on the subject, that I was not alone/crazy, and a million other things, I learned right here. I can't thank each and every one of you enough! A big thank-you to Scott for providing us with this board where we can help each other.

[mommida]

The only other source I learned from was Danna Korn's book, Kid's with Celiac, EVERYTHING else I learned was from this board. (At diagnoses, the nurse said on the phone, to "by the book, join the support group, and go to celiac.com") Every search topic I googled was inspired from articles on celiac.com or posts. What I really didn't expect was the caring and compassion complete strangers offer each other here. That a fourteen year-old boy knows more about Celiac, than most doctors I've met.

L.

[Mango04]

I've come to understand that even though I've never been tested for Celiac Disease, extremely positive response to the dietary change is a valid reason to not eat gluten.

I also learned to check my shampoos etc. for wheat and I learned all about great products such as Gluten-Free Savoniere, Bare Minerals, Badger Balm...(strange how all sorts of skin problems went away when I eliminated wheat-filled skin products)

Prior to joining this board, I would toast stuff in gluteny toasters. Eww! What was I thinking????

I've snatched some great recipes!

This board helped me truly grasp the concept of shopping for foods that are naturally gluten and dairy-free, rather than buying too much packaged food. It's so much healthier and less expensive!

Hmmm...I'm sure I'll think of lots more....

[Lollie]

I don't know how I would have gotten throught the past few months without this board. So many have given me great advice, great support, and I've made a couple of wonderful friends!

Thanks to JudyinPhilly- I learned how to deal with my mom in a boundaries type of way and limit the information I give her about my disease, our relationship has been much better.

JKmuchkin- Gave me the wonderful advice to bake my own cake for family functions and just not worry about my family and how they deal with my diet. And that great tip to add yogurt to the cake mix!!!! I always do it and I always get raves!

And to everyone who always answers the postings- your invaluable to me- my real support system!

Thanks-

Lollie

[cornbread]

Off the top of my head, hearing about Enterolab, Breads From Anna and The Specific Carbohydrate Diet. More generally, having a place to visit to feel like I'm not dealing with this all on my own. The outside world (including ones own friends and family!) is a harsh place to be when you're gluten-free - the antidote is this forum.

[mamaw]

I can sum mine in one word: Everything

thanks gang

mamaw

[Rusla]

You are so right Lollie and gang. The first time I tried to go gluten-free was an abysmal failure. Then, I did not know about this forum or all of you. Without all of you and your support I would have been nowhere.As the song "If Not For You" says: "I'd be lost if not for you." In my first month on here I learned more than I could have ever learned from a doctor. The Celiac Association told me about Dermatitis Herpetiformus, getting a skin biopsy and a binder full of good stuff. All of you have have been more help and support than anything else could have been.

[mommida]

I was stressing trying to figure out how to replace graham crackers for smores for the yearly trip up north. Someone on here said just use gluten free chocolate chip cookies. So simple, you don't even have to break up a chocolate bar in the dark. Now I like the "smores" even better now!

L.

[VegasCeliacBuckeye]

The straightshooting and sound advice from Richard (lovegrov), Tiffany (tarnalberry), celiac3270 and KaitiUSA.

Most of the advice was product suggestions and ingredient knowledge, but also the science of Celiac and who's who in the Celiac world of authors and scientists.

Much thanks to them and everyone else on the board!

[Rachel--24]

I don't even know where to begin....I've learned so much from this board. Like someone previously stated...."everyone here has something to offer". Since I got sick I can honestly say this board is one of the best things to come my way. I've never had a question go unanswered and no matter what might be going on...someone is always there to offer help, wisdom, kindness, encouragement, etc. Its great to have so many caring and thoughtful people as members of this board. Other message boards simply don't have as much "character" as this one does.

I've gotten so much help here it would be impossible to name all of those who have helped get me to where I'm at today. Some who come to mind right now are Kaiti, who answered my very first post, and told me about tests not being accurrate while not eating gluten, checking for gluten in cosmetics, etc. and about Enerolab testing. All important things I had not been aware of.

On one of my worst days JerseyAngel was kind enough to find out if my medication was gluten-free because I was sooo sick and didnt feel like making phone calls.

JudyinPhilly is just always so sweet and caring towards the members of this board....waht else can I say?

I've learned everything about Kinnikinnick (except how to spell it) from JnkMnky!! Also love her posts as they always make me laugh or leave me deep in thought. There is always something more to learn!!

Everyday I still learn something new from someone here so I keep coming back.

[Jnkmnky]

I was stressing trying to figure out how to replace graham crackers for smores for the yearly trip up north. Someone on here said just use gluten free chocolate chip cookies. So simple, you don't even have to break up a chocolate bar in the dark. Now I like the "smores" even better now!

L.

Hey, that's what we do! Plus, here's a tasty alternative... we used peppermint patties on them rather than chocolate! It was a hit.

Rachel... Thanks for the compliment. That was TOO nice, really.... but I'll take it!

[schuyler]

Y'all are so nice and helpful. If it weren't for this group, I'd still be using the same toaster, shampoo and other things (and I'd still be sick). Thanks everyone!

Danielle

[tiffjake]

I have learned from tarnelberry, jnkmnky (who I think their name mean junk monkey? cant figure it out, drives me nuts!), judyinphilly,celiac3270 (where is he?), vydorscope, debmidge, chelsE, who else....gosh, so many....I learned about Kinnikinik (sp?), about recipes, about cooking, about traveling, how to deal with a rude friend, and what to do about a bad job situation. You guys are all the best! I appreciate this board so much. I wasn't diagnosed when I found it, and reading about symptoms helped me to talk to my doc. Thanks all!

[flagbabyds]

I've learned many things, but what has been great for me is to help everyone else out. I am a pro at gluten-free and have been it all my life. I was actually the first person who responded to celiac3270's forst post, and now look at how many posts he has, it makes me feel great to have taught him the beginnings of celiac. I don't have as many posts because I have way too much other stuff to do, but I still fell like I am helping many people on this board learn to cope and love gluten free.

[tiredofdoctors]

I have learned so much from everyone on this forum -- and I am gluten-free because of it. I tried going gluten-free before I joined -- I had even dropped out -- but when I got involved, I finally had the resources to be gluten-free.

I have had more inspiration from the people on this forum, and have learned more about the strength of character that people with chronic illness have. I have also learned that, when the chips are down, people that you haven't met in person will be there to lift you up. Is that incredible, or what?

Karen, Armetta, DebMidge, Judy, Kati, JenVan, Richard, Vincent, Shirley, Rusla, ChelsE, Rachel -- you guys are just the best. I hope that I haven't left anyone out! If I have, can I chalk it up to brain fog??? (Seriously, they want me to be tested -- that's pretty scary!)

What I've learned the most, though, is that even though I have this disease, it doesn't have me. And I have all these great people to remind me of that. Boy, am I blessed.

[Fiddle-Faddle]

I've learned so much from all of you, I don't even know where to start! Okay, I guess the most important one is that a positive dietary response means more than a diagnosis from a doctor. But, wow, the amount of informatin on this board is mind-boggling!

[debmidge]

I feel like I am at the Oscars! I'd like to thank Scott for creating this wonderful forum and the entire Celiac.com site. I like to tell my forum friends how much I appreciate their kindness, care and concern. I have learned a lot (like separate toaster, implements, etc. - thanks to celiac3270, who is the Ambassador of this Board!) I especially appreciate Richard (lovgrov)'s advice on products - his opinion is very much respected by all. I want to thank the dedicated moderators who keep us civil when warranted.

I always find the info I need from those who share this board. I always relay the info to my husband (who refuses to use this computer) and let him know that what he is going thru is "normal" for a celiac. I truly feel that Celiac.com has provided me and my husband with the crucial information we needed when he was a "newbie." I don't know what I would have done without Celiac.com.

When I speak to someone about celiac disease I always mention that they should visit Celiac.com for greater understanding of it. It never fails to stir my enthusiasm for distributing pamphlets about celiac and spreading the 'celiac' word to those who don't know about it.

So thank you to all - you know who you are

..... let's always keep Celiac.com as the #1 spot for the best celiac conversation and information about celiac disease.

D.

[TCA]

Well, for starter's, I learned about Chebe, Kinnikinik(sp?), Enjoy Life Snickerdoodles, and so much more. I also think you guys probably saved my daughter's life, literally. She was sooooo sick after her open heart surgery last April and in the hospital all the time. One doctor told me that I just had to accept that heart babies are sick a lot and forget about trying this diet crap because it wasn't going to help. Well, after going gluten-free last September, she's only been hospitalized once and that was for a heart cath getting ready for her surgery this summer.

Long before I joined, I read posts and searched posts to find answers. I joined after my son showed a positive dietary response in January. I was just about to the end of my rope and all of you caring, loving people showed me how to let my kids be healthy again. That's the greatest gift I could ever recieve.

When Megan started having more issues in February, you told me to check health and beauty supplies. I got rid of everything and she started gaining again. Her doctors are amazed at the progress she's made and can't believe I figured this out on my own. They just don't know how great my consultants are.

I really think I may have lost my mind without all of you. You are my divesion from the meds and feeding tubes and medical equipment throughout my house. I come here to learn about celiac disease, but I also come here to check on my friends, hopefully help people who are where I once was, and "get away" for a few minutes. That means more than you could know.

May God bless each of you,

Tanya

[TinkerbellSwt]

I actually didnt find this site, my dh did. While I was in the hospital for 8 days, suffering from the effects of celiac he found this board and joined it. He then would come in to visit me in the hospital with this bounty of information.

When I got out of the hospital and was home a few days, I was regaining some strenth, I checked on here. I wanted to thank every one of you. You all saved my life. You taught me how to eat, check all my products for wheat (which btw my family cant believe its in the stuff that it is) and just generally be there for support.

I still go through major depression regarding this diseases. There are many times when I still feel awfully alone. I still have faith though for now that it will get better.

My first day on this board I had such a great welcoming "commitee" it was wonderful. I want to thank everyone who made me feel part of something again.

[jenvan]

Well, I won't pull out anything specific...but have learned a tremendous amount of information here! Grateful for everyone and the care they offer. and even better -- I've made friends all over the country--and a few outside of it! And I plan on visiting a few in the next several months It's fun to have friends wherever you go....