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There Needs To Be A "success Story" Forum Category

Twizzel

By Twizzel
in Coping with Celiac Disease

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Twizzel Rookie
Twizzel
Posted

Is there a "success story" part of this forum where people get better and write their stories and inspire others? If there isn't. I feel it would be very beneficial to the community. It would also be very inspirational and educational for thos who are struggling.

I feel like most people on here are people who are suffering. It would be great to have a community of those that are doing great return to help others still down in the dumps.

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pricklypear1971 Community Regular
pricklypear1971
Posted

I agree!

mushroom Proficient
mushroom
Posted

It is both a bad thing and a good thing that those who do well and recover no longer have need of the forum and tend to move along. Some hang around and pay their dues helping others out, but most of our success stories have moved on with their lives. I agree it would be good to hear from them :D But if you look at our total membership number versus the number of members who are active on the board, you will see that we have had a fair number of movers on.

pricklypear1971 Community Regular
pricklypear1971
Posted

It is both a bad thing and a good thing that those who do well and recover no longer have need of the forum and tend to move along. Some hang around and pay their dues helping others out, but most of our success stories have moved on with their lives. I agree it would be good to hear from them :D But if you look at our total membership number versus the number of members who are active on the board, you will see that we have had a fair number of movers on.

I think that is a presumptive assumption.

I'd love to read stories - it's the best way to learn, I think. It would be great to read a diary of sort.

mushroom Proficient
mushroom
Posted
I agree it would be good to hear from them :D

Yes, that is a presumption. But do you see 38,000 plus members posting here? It is a presumption based on seeing posters trying to solve their problems, having success, and leaving us. And while it would be interesting to read their stories they have not chosen to remain with us.

cahill Collaborator
cahill
Posted

I think that is a presumptive assumption.

I do not feel it is a presumptive assumption. I feel it is the nature of forums such as these.

Some come take what they need and leave, some come and find a home and stay but most eventually move on.Tis just the nature of this type of forum.

As to success storys: many of our storys are like roller coasters, with many ups and downs.Some good days and some bad,eventually more good days then bad. Tis the nature of celiacs.

lovegrov Collaborator
lovegrov
Posted

Twizzel, I have to agree with others that frequently the folks who hang out longer are the ones who continue to have issues or struggle, so you might read more negative posts. I think this board has had more than it share of folks struggling recently and so might seem a little on the darker side lately.

On the positive side, I was dying exactly 10 years and the thing that saved my life was going gluten free. Has life been perfect since then? Well, no, but the biggest negatives, including one HUGE one, have nothing to do with gluten, either. If I have any permanent damages from celiac I'm not aware that they are in fact attributable to celiac, and while eating out will always be something of a pain, I'm able to do it with planning. I'm not a hermit and I have friends and family who understand.

richard

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Roda Rising Star
Roda
Posted

I have stayed active on this board for almost 3 years now. I found it to be a wealth of information when I started out. I feel by staying active is my way of paying forward the help I recieved. Plus, I feel everyday I can learn something new.

pricklypear1971 Community Regular
pricklypear1971
Posted

The truth is this forum will never know why people stop visiting and posting unless the question is asked. Everybody can get all up in arms because I stated the obvious; however it doesn't make it less true.

I think the original post is a good idea. Perhaps the administrator will consider it.

mushroom Proficient
mushroom
Posted

I'd love to read stories - it's the best way to learn, I think. It would be great to read a diary of sort.

One of our members, elye, has proposed writing a book of stories and has asked for members to volunteer with their stories. You could help out others like yourself by sharing your story with her.

As for reading the stories now, we read them every day, in installments. Unlike TV, the daily episodes frequently do not end with any resolution, but if you stay around long enough you get to share the successes of others. :)

If you feel strongly about the forum topic that Twizzel suggested, send a pm to admin advocating for it.

navigator Apprentice
navigator
Posted

I was only diagnosed in May so too early for my success story, although I now have good days, but I can share my daughters story with you, Twizzel.

Since my daughter was 5 years old I had taken her to doctors and emergency rooms, only to be told that I was an over-anxious mum. When my daughter was eighteen a consultant told her that she was a drama queen and that there was nothing wrong with her.

She was married in March 2009 and four days after she returned from honeymoon she was admitted to hospital. They had no idea what was wrong and ran a battery of tests every day. On the 7th day she was diagnosed as coeliac. She attempted to return to work but her health couldn't cope.

She has been strictly gluten free since then, including toiletries, make-up etc. Her husband eats gluten when he's out of the home but the home is strictly gluten free. After two years she started to show an improvement and just kept improving. I'm very pleased to tell you that she started a college course at the end of August and is healthier than she has been at any time in her life. At her worst she was bed-bound and then spent periods of time in a wheelchair.

Cinnamongirl Rookie
Cinnamongirl
Posted

I like to read success stories, too, because they give me hope that I'll continue to improve. I have been gluten free for almost two years and many symptoms have improved dramatically. I had become so anxious and depressed that I was nearly agoraphobic - didn't even want to leave the house. The depression has lifted and I now enjoy socializing again (I did not take anti-depressants). I can drive and shop normally now. I used to do a lot of shopping on-line because shopping made me anxious. I had developed a lot of avoidance behaviours. I rarely feel brain fog anymore (only if accidentally glutened) and can focus better. My thoughts used to be obsessive/compulsive (worry) and I am less bothered by worry now. I sleep better and have increased stamina, too. My stamina has never been great, but I can walk longer periods now and housework doesn't tire me out like it used to. I'm assuming my seratonin levels have really improved since I've been gluten-free.

I seem to feel better when I cut out dairy as well. I tried Lactaid milk, but I had a reaction after drinking it which makes me think that casein bothers me instead of lactose. I think I'm OK with corn and soy, but haven't really done a good elimination diet for them. I keep hoping that as I make other changes to my diet that I'll eventually feel good most of the time. I went from feeling good a handful of days a year to feeling good about 70% of the time. That is a tremendous relief to me - it feels like my kids got their mom back and my husband got his wife back!

srall Contributor
srall
Posted

I have stayed active on this board for almost 3 years now. I found it to be a wealth of information when I started out. I feel by staying active is my way of paying forward the help I recieved. Plus, I feel everyday I can learn something new.

I agree. I've been active for awhile, and sometimes don't visit the boards for long periods of time. But I do like to check in periodically, even when I'm doing well, because the people on this board have provided more honest and accurate information than any doctor. Another reason this board is so helpful is that my daughter and I are also dairy/corn/soy free plus very very very little processed food and there is lots of support for that as well.

Plus most everyone here understands my profound frustration with health professionals.

This has been a tough journey, and I still feel like we're fighting for our health every day, but the difference in the both of us is night and day. It would be fun to have a section for people's success stories (and back stories).

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