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How Has The Forum Helped You?


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32 replies to this topic

#1 CarlaB

 
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Posted 18 September 2006 - 12:31 PM

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.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

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#2 ArtGirl

 
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Posted 18 September 2006 - 12:39 PM

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.
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Valda
Enterolab results: ...two genes for gluten intolerance ...casein intolerance
other sensitivities: corn, eggs, soy, potato, tapioca
Hypoglycemic
Sensitivity to high EMFs [electromagnetic frequency] (limits my time in front of the computer)
Living a healthier, happier life.
-------------------------------------------------------------------------------------------------------------------
If I take the wings of the morning, and dwell in the uttermost parts of the sea, even there shall thy hand lead me, and thy right hand shall hold me.Psalm 139: 9,10

#3 jerseyangel

 
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Posted 18 September 2006 - 12:44 PM

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 :ph34r: 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 :D
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Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#4 Guhlia

 
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Posted 18 September 2006 - 12:47 PM

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.
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~Angie~

Gluten free since May 2004

#5 Rikki Tikki

 
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Posted 18 September 2006 - 12:51 PM

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! :D
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Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"
"blood work show's a disease called celiac,
but it can't be that because it's rare!"
Diagnosed via blood and biopsy 2003


Not a medical professional just a silly celiac
offering support, my
experience and advice

#6 Lisa

 
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Posted 18 September 2006 - 12:53 PM

I've learned more about ALTOIDS, than I thought possible :ph34r:
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#7 Guest_~jules~_*

 
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Posted 18 September 2006 - 12:58 PM

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! :D 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!!
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#8 marciab

 
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Posted 18 September 2006 - 01:19 PM

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. :D thanks ... marcia
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Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)
August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...
July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)
Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)
September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

#9 Lisa

 
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Posted 18 September 2006 - 01:20 PM

I've learned more about ALTOIDS, than I thought possible :ph34r:



Sorry Carla, but I just could not help myself. :P
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Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

#10 oceangirl

 
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Posted 18 September 2006 - 01:22 PM

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! :D 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
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#11 CarlaB

 
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Posted 18 September 2006 - 01:27 PM

Sorry Carla, but I just could not help myself. :P

Gave me a good laugh! :lol: That was my aim, to cheere things up around here!!
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#12 jerseyangel

 
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Posted 18 September 2006 - 01:29 PM

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

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


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#13 Ursa Major

 
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Posted 18 September 2006 - 01:58 PM

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! :rolleyes: 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 :ph34r: ), 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.
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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

------------------------------------------------------------------------------------------------------------------

#14 AndreaB

 
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Posted 18 September 2006 - 02:26 PM

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. :P
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Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.


#15 CarlaB

 
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Posted 18 September 2006 - 02:33 PM

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

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!
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gluten-free 12/05

diagnosed with Lyme Disease 12/06




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