Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

There Needs To Be A "success Story" Forum Category


Twizzel

Recommended Posts

Twizzel Rookie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



pricklypear1971 Community Regular

I agree!

mushroom Proficient

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

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
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

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

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Roda Rising Star

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

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

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

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

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

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).

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    2. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,416
    • Most Online (within 30 mins)
      7,748

    Heather8280
    Newest Member
    Heather8280
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.