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How Has The Forum Helped You?


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32 replies to this topic

#16 burdee

 
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Posted 18 September 2006 - 02:40 PM

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
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


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#17 Rachel--24

 
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Posted 18 September 2006 - 03:26 PM

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. :wub:
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. :D
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Rachel

#18 ianm

 
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Posted 18 September 2006 - 04:57 PM

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.
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If all the world is indeed a stage and we are merely players then will someone give me the script because I have no f!@#$%^ clue as to what is going on!

What does not kill you makes you stronger.
Nobody cares about losers and quitters never win. If you fail with the cowards then what's the message you send?
Can't get it right, no matter what I do. Might as well be me and keep fu@$ing up for you. - Brian Thomas (Halloween, the greatest metal band ever!)

Ian Moore. Self diagnosed at 36 because the doctors were clueless.
Started low-carb diet early 2004, felt better but not totally gluten-free. Went 100% gluten-free early 2005 and life has never been better.

#19 jennyj

 
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Posted 18 September 2006 - 06:18 PM

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 :)
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jennyj


Diagnosed March 2006 celiac sprue
Severe iron deficent anemia Jan 2002
Hypoglecemia 2000


"I can do all things through Christ who strenghtens me"

#20 Green12

 
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Posted 18 September 2006 - 06:48 PM

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.
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#21 Ursa Major

 
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Posted 18 September 2006 - 08:28 PM

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.
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I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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#22 Kaycee

 
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Posted 18 September 2006 - 10:36 PM

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
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#23 gfp

 
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Posted 19 September 2006 - 01:29 AM

What a great thread!
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Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

#24 aikiducky

 
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Posted 19 September 2006 - 02:19 AM

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! :D :D

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
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#25 Guest_nini_*

 
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Posted 19 September 2006 - 03:33 AM

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.
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#26 StrongerToday

 
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Posted 19 September 2006 - 06:40 AM

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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Ev in Michigan

GFDF since 8/20/05
Negative Bloodwork ~
Dr. encourages me to trust my
"Gut Reaction"

#27 CarlaB

 
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Posted 19 September 2006 - 06:43 AM

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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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#28 Canadian Karen

 
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Posted 19 September 2006 - 06:48 AM

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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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


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#29 jayhawkmom

 
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Posted 19 September 2006 - 07:13 AM

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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Jayhawkmom -
Mom of three....
Jay - 11
Bean - 8
Ian - 3

#30 myserenityprayer

 
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Posted 19 September 2006 - 07:16 AM

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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marissa


.be the change you wish to see in the world.


gluten free since august 3, 2006
soy free since september 9, 2006
positive blood test august 2, 2006
positive biopsy august 10, 2006

diagnosed with hoshimoto's hypothyroidism in 4th grade
diagnosed with PCOS sometime in high school
"genetically" extremely high cholesterol and tricyclycerides




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