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How Has The Forum Helped You?
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33 posts in this topic

I'm so glad you started this thread. Will all the recent um... "emotional outbursts" (for lack of a better term) we need to concentrate on why we're really here.

I learned 100 times more here then I did from my own doctor, nutrionist, and wellness coach combined! From cross contaminiation, to reading EVERY label especially lotions and shampoos - which I never ever would have worried about... to the most important is that I AM NOT ALONE!!!

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I'm so glad you started this thread. Will all the recent um... "emotional outbursts" (for lack of a better term) we need to concentrate on why we're really here.

Yea, I had an ulterior motive, I wanted to distract everyone from some of the other threads! Seems like everyone wants to post, so I thought I'd redirect to a more positive thread!! ;)

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Gee, where to start:

1) I learned that a 13 yr old boy could be an amazingly articulate human being with the capacity to singlehandedly reassure me, calm me down, give me clear concise information and show a level-headedness that I didn't think existed in a 13 yr old. celiac3270, of course I am talking about you. Our wonderful celiac3270. We luv ya! Oh, and we're sooooooo proud of you too!

2) I didn't even know cross-contamination existed until I came on here.

3) I have learned that everything that I have read saying "Going gluten free almost immediately shows positive results and that as long as you go on the gluten free diet, you are guaranteed that everything will go away" IS A LOAD OF CROCK! True, it happens to many people, but there are many of us out there who have had so much damage done that we are beyond the point of no return. I have gotten comfort in the knowledge that there are more than just me that have not reached total health again due to this disease.

4) I have made the most wonderful, caring, exceptional friends on here. Friends who have offered to pay for me to get additional testing down in the States, friends who have sent me little "pick-me-ups" in the mail when I am feeling down, friends who have sent other things that have helped me tremendously, friends who I know can be counted on no matter what. This point alone is the single most important reason why I thank God every day (sorry, Steve) for steering me to this site.

5) I know that no matter what comes in the future, I have a whole family here that I can count on to help me through.

Hugs.

Karen

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I am still very new to this group and the Celiac Lifestyle.

When my daughter's pediatrician first said the words "Celiac Testing" to me, I started doing research. We'd been dealing with months of "D" - months of stomach pains, waking in the middle of the night, not eating, vomitting...etc.

The first blood tests came back "negative" as far as the doctor who ordered them was concernerd. (NOT our wonderful pediatrician) But, thanks to the folks here, I learned that I could not take someone on the phone saying "Negative" as proof positive that she didn't have Celiac Disease. You all helped me find my backbone and to question the results.

I did just that, and learned that her results weren't NEGATIVE at ALL! But, the allergist didn't know how to read them. We took them to a GI who decided that it was important to scope her to see if there was anything else going on. That's when we found the ulcers in her duodenum. And, that's when "treatment" aside from the gluten-free diet began.

She's been gluten free since the day of her endoscopy(in June) and has gained 3 lbs and grown almost 2 inches!!! She's being treated for the ulcers, and she's a MUCH MUCH MUCH happier child. Pain is a thing of her past, unless accidentally glutened. I hate to admit, that's happened a few times due to MY inadequate detective work. But, I'm getting better!!!

I had no idea that a "normal" person would/could question a doctor's diagnosis! You guys pushed me to do just that. And, because of it... my daughter is a much healthier little person!!!!!

ANd, I greatly thank you!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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Just when I thought I was losing my mind, this forum has helped save my sanity. Everyone here has been and continues to be so supportive, whether I cave in and get fries from McDonald's or not! Carla has given me the most useful advice and is always quick to respond to my anxiety ridden questions. I have learned alot from Ursula especially about soy products. It so comforting knowing there are so many others out there feeling the same way I do. I like reading about the success stories and how going gluten free has drastically improved the health of many on this site. If it wasn't for this forum I would still be eating soy soy and more soy. Not to mention cheese!!! I have learned about other intertolerances to keep my eyes out for and have learned of the importance of cleaning out your house for unknown traces of gluten in things like beauty products and toaster ovens. I am working on feeling comfortable offering my own advice when others post. I feel so knew at all of this and wouldn't want to give the wrong advice. But I guess thats what this forum is for. We know that there is not nearly enough info out there on celiac disease and gluten intolerances. Heck, I feel like I know more than my nutrionist or doctors, thanks to this forum and the research I been doing on my own. We all must continue to support each other and learn as much as we can on gluten issues. I have also learned that I am not the only one suffering from serious brain fog and I am still fathomed by the connections to other autoimmune diseases like the ones I have. This forum has seriously changed my life. Thank you so much to everyone!!

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Misdiagnosis and false negatives on celiac testing had left me disabled and very isolated. This forum has helped me to feel like I have a bit more of a life. That maybe my experience and recovery served some sort of purpose, if I could recover as much as I have from so much that I was handed pills for and told 'learn to live with the pain' perhaps others could also. I am most thanksful for the info on CC and on personal products. My hair would have never stopped falling out if I had continued using the stuff I was using. Although it was hard to go through my cabinets and throw out lots of money spent on stuff it was so worth it. But I think the most valuable thing I have gotten here is not feeling so alone, I still get lonely at times and wish I had freinds to talk to or do something with but then I come on here and realize that many are also in my shoes and it helps a great deal.

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First off, I don't sit a stage of panic anymore because i've now realized other people truly have these same issues...i'm not just crazy!!

Second, i've learned through this board about my dairy problem...which i would still have now if it wasn't for all of you out there!

Lastly, besides tons of support i've gotten alot of great recipes :D

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Wow...this is one of those questions we could sit around and talk about for hours b/c the list is so long for how this forum has been so helpful to each of us. I don't even know where to start....but i'll try:

First and foremost I would have to say that there are some WONDERFUL people on this forum. It's such a pleasure to come to this forum and to be able to talk with someone else who TRULY understands celiac and all that one can go through with this disease. It is so great to come to a place where people are "johnny on the spot" to your questions, concerns or if you just need some support. Everyone is so helpful and giving. I have made some great friends thanks to this site and for that alone I will be forever grateful! Thank you to everyone who shares their knowledge, their insight, their courage, gluten-free products you've found, recipes, etc. EVERYTHING is sooooo helpful!!!

The top 10 things I can think of off the top of my head in trying to answer this question:

1. Where else can you go and talk about diarreah, gas, bloating??? :lol:

2. Where else can you go and admit to everyone and their brother that you were a moron for glutening yourself?

3. Where else can you go when you've been in your kitchen for a really long time trying to cook something and you need HELP!!!! And fast!!!???

4. Where else can you go and talk about gaining weight including all the details about fat rolls, having to buy bigger sized underwear, having to buy maternity pants b/c you're so bloated you can't fit into anything else, etc.???

5. Where else can you go and ask for help in trying to find the hidden gluten?? You know it's somewhere.

(Thank you GreenFingeredGaelic for helping me to see the hidden gluten in my wood cutting boards, DUH)

6. Where else can you go to find such awesome unending support????

7. Laughter, Laughter and more laughter!! (I think even GFP has even laughed a time or two) :P

8. Links to gluten-free products

9. Safe food lists

10. Patti for being my personal hygiene product consultant, especially with regards to our unruly hair & sharing ideas on which products are safe that can tackle our manes! Oh...and of course, Nini & the newbie packet she put together!!!

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