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Jnkmnky

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

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Guest nini

Gosh, I've learned so much from this board... it's a total lifesaver! I can't pin it down to one particular thing, but I've learned something from each and every one of you!

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I think I would still be an emotional wreck, and I would still be trying to get the hang of this diet if it weren't for this site. I can't even put into words how much this board has helped us.

I think the biggest thing I have gained from this site, is the strength to make ALL my kids and myself gluten free, not just the one with the + diagnosis. Our ped thinks I'm a bit over the top for doing it, and had it not been for all of you, I probably would have believed him. But after reading so many stories of positive dietary responses, I know I am doing the right thing, no matter what the blood tests show. This is the only place where people don't think I am out of my mind for "depriving" my healthy kids of regular food. It's a very empowering place to be, and I can't thank everyone enough. We are a happier and healthier family now, which is priceless.

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I've learned basically everything from basically everyone. I can't pinpoint who or just one thing, just everything! I must admit, I thought you guys were nuts when you talked about cc and how you all must just be paranoid...lo and behold, cc does matter! I'd be picking my croutons of my salads if it weren't for you! And I never would have thought of health and beauty stuff, either. Although, miraculously, almost all of them were gluten-free.

Oh and whomever posted the 3 ingredient PB cookie recipe, thanks! DH eats them more than me, but he loves em! I have to make 3 batches tonight for his big presentation tomorrow. :P

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Chelsea--I'm being lazy here--what is that 3 ingred. recipe? I want to make them, too!

1 c. peanut butter

1 c. sugar

1 egg

(I add a tsp of vanilla, too)

Pop them in the oven at 375 for 12-15 mins. Viola!

I use a tbsp disher that I got at my local restaurant supply, but you can roll dough into balls and flatten them!

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I have learned a lot from this board and I am always learning. I don't want to mention names in case I leave someone out, but a number of people on this board have helped me since I've joined here and I want to thank you. When I have extra time I also like to help others out just like others have helped me.

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Chelsea--Thanks!--I just wrote it down. I will use the vanilla, too. I have a small ice cream scoop that I use for cookies that will be perfect for this. In the spirit of this thread, I learned something new today--thanks again :D

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I believe that if it weren't for this board, I would have found it so much harder to come to terms with being coeliac from an emotional point of view. And I certainly would not have been so successful at being gluten-free, cos the info from the drs pales into insignificance compared to the info shared here. Most of all, everyone's been so friendly and encouraging and so willing to share their own experiences. thanks everyone! :D

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There probably are not many here that I have not learned something from....too many to remember and name even. But I have to single out two of you for special thanks.

Nisla (nini) - who sent me to her GI who did my biopsy and dx'd me. Then she saved me the first few weeks going gluten-free as the doc didn't even give me the name of a dietician which Nisla told me later was a good thing...

It was like having my own personal gluten free consultant on call.

Patti (jerseynangel) who was online at the moment the GI above called with my dx. She pm'd me and let me know I'd be able to do this new scary thing called gluten free living. And she was right!

Words could not ever express the gratitude I feel for this board and everyone on it who's here to help.

p.s. I must give special props to Rusla - when I read her posts about ignorant people and how to handle them I fall on the floor laughing!

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I learned that I was NOT gluten-free cause I thought it was okay to pick my croutons off the salad and maybe blow away any crumbs. :o Folks here set me straight right quick!!

I've sent so many people here, it's not even funny!! This place is the best!!

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Guest BERNESES

jnkmnky- Great idea for a thread!

I think the best thing I've learned is how to live this gluten-free life and all that it encompasses. I could list everyone I'd like to say thank you to but it's pretty much everyone!

I just like knowing that when the stinky stinky has hit the fan, and I'm bumming big time, I come here and someone always has an answer, advice, a prayer, makes me laugh, sends out good vibes or gives a cyber hug. Thank God, the gods, the angels, Buddha and anyone else I forgot to mention for this place!

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The most important thing I learned here is to be strong in the face of ridicule, disbelief and bullying. It's amazing how awful friends and family can be when you're trying to take your health into your own hands. I know my story isn't unique on this board. It just still astounds me how US not eating gluten can possibly be so threatening to the people in our lives. I mean, more cake for them right? :lol:

Also, knowing that there are other people in the world who had the horrible gas and 30-seconds-notice-to-get-to-a-bathroom diarrhea. I was starting to think I was the only one. :unsure::ph34r:

I was so prepared for going gluten-free after I had my biopsy that it was a very smooth transition for me. I learned SO much here, and so many of the details that I never would have learned about anywhere else, or wouldn't have taken seriously otherwise.

Really though, just knowing that there are other people in the world just like me.

Thanks everybody!!!!

Nancy

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Mine is a best recipe. I got lots of good advice and info, but the best of all, was a recipe from Carriefaith for her Soft Chewy Breadsticks. I make these a lot. Undermix them and they taste biscuity. Mix them the right amount and they're terrific breadsticks. If only I could find a fool-proof hamburger/hot dog bun recipe.

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NINI'S CHICKEN!!! :D Just remember to add the egg! :rolleyes: (she forgets to tell you that one!)

But I agree...I think a lot of people have been soooooooo helpful! I wouldn't have known what to buy or do. I too rec. this site to everyone I know!

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It is amazing how I can be alone at home on my computer and feel surrounded by people who know what I am going through. The emotional aspect of this disease has been hard for me. But having this board has been a life saver. I am truly thankful.

Hez

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Guest nini
NINI'S CHICKEN!!! :D Just remember to add the egg! :rolleyes: (she forgets to tell you that one!)

But I agree...I think a lot of people have been soooooooo helpful! I wouldn't have known what to buy or do. I too rec. this site to everyone I know!

YW! and LOL! I did forget that I originally posted the "egg free" version for those with allergies and then just kept copying and pasting THAT version! SORRY!

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I'm still learning so much from this board! Just 2 days ago I read a post from someone (I think it may have been her only post) who was discussing corn intolerance. Lo and behold this may be the answer to my lingering health problems. Without her post I would still not be giving corn a second thought. I think I was meant to read that thread. Just another example of how we all contribute something to this board! Dont be afraid to post...you never know....you could truelly change someones life. :)

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The best thing is, you can pose a question, and within minutes or hours, wonderful people have shared their experiences. You can't call your doctor any time you have a question or an issue, and if you did, he or she would not call you back all the time....so the people here are truly a lifesaver.

{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}} to all.

Susan

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This is the best advice I've gotten this far:

In October, two weeks after figuring out the celiac disease connection, somebody (no clue who) posted about lectins, with a link to the website I am linking to in my signature. I read through it all, and realized I've had problems with all those foods for years, but other than the nightshades, had never taken it seriously. So, I stopped all the lectins then. When I tested them three months later, I had absolutely horrible reactions to them all. I am so glad I followed that link!

Rachel-24 posted that she thought she may be intolerant to salicylates, and I think she also provided the link to the site I am now linking to. I thought I'd check it out, since my pain had started coming back, when my intestines started healing on the gluten-free diet. What an eye opener. I was praying it was either the lectins or the salicylates, but through being my own guinea pig and doing an elimination diet, I figured out that it was unfortuately both. I am now nearly pain free and getting better all the time.

Then of course, came the advice about the personal care products. I would never have figured it out on my own! Now of course, I have to buy ones without gluten or salicylates, which is very tricky, but worth it.

There have been many other important tips and a lot of great advice and encouragement from many people here. Thank you to you all! I couldn't have done it without you, you're a great bunch of people.

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Guest Viola

I've learned so much about new products that I wouldn't have even looked for, and they add so much to my diet.

I've learned that it can be fun to talk about bowel problems :lol: and everyone understands.

It's the amazing helpfullness of everyone on this board that makes life so much easier, and the humor that makes life so much more worth living!

I think even the Gab and chat thread is really helpful in dealing with Celiac. After all, home canning is certainly healthy and we know what's in it .. quilting, sewing and crafts of all kinds helps us deal with the depression. And lord only knows where we would be without our pets ... yes even the rats :lol:

Hugs to all of you!

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My sister is the first one I ask, of course she is a celiac too and a dietician--she has diagnosed patients before the doctor and the doc comes back and thanks her. Back when I first started coming to this site, celiac3270 and Kaiti are the ones I remember most. To this day, if I have a product question I am not sure of, I ask Kaiti and together we figure it out. Richard (lovegrov) and I rarely see eye to eye--we seem to enjoy sparring at times. As a rule, he knows his stuff. ;) I read through the forums and every now and then I read something that is "right in front of our faces" but maybe too close to realize--then after reading, it makes perfect sense.

Do any of you oldies remember McDougal--he went gluten free and posted his progress from day one of gluten-free, it was very interesting. He started posting in hours, then days, and weeks. He is one of the celiacs who notices almost immediate relief, but he was so very sick to begin with. He had a bike accident and broke his leg really badly, it wouldnt heal properly because of the celiacs. He often calls me his "celiac angel"--I talked to him daily, helping him to figure out what he can and cant have. That was over 2 1/2 yrs ago and he and I are still very good friends. I have made many good friends through these forums, not just this one, but braintalk communities also. Celiacs is becoming more and more well known. In time, people will know celiacs as they do diabetes--meaning, they will know its out there, but many will never understand us. Deb

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I'm a newbie and this is an excellent thread. Thank you for starting it right after I joined :)

I came to this board first through a google search on Eating Disorders and Celiac. Reading the posts I found, especially Nini's, made me feel like I finally had a place to find answers and attitudes for positive change. And confirmed my suspicion that you don't have to be underweight to have gluten intolerance.

My grandmother and I have the same body chemistry, shape, size, and yo-yo dieting issues. Also similar stuggles with depression. She was never diagnosed with celiac. She died at age 74 with celiac-associated virulent small bowel cancer and had 5 cardinal signs of celiac, including a Raynaud's diagnosis. Her mother survived to be 94, in point of comparison.

I've tested negative on TT and IgA. I can't get in to the celiac center here for a GI consult until July.

But my mother, who is a doctor, and I have put together a family history that suggests that I have at least 2 living first degree relatives with celiac, that my grandmother had celiac, and that my uncle, who killed himself last fall after years of struggle with post-polio syndrome and what was diagnosed as "chronic fatigue," had celiac.

So far, this board has taught me to trust my gut, literally and figuratively. It gave me comfort about diagnoses when my bloodwork came back negative. It showed me how much everyone else has gone through to make it this far. I have been inspired by everyone's story and I feel extremely lucky to have the advice and resources that this community offers.

Thank you all!

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