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What Has The Support Group Done For You?

eimzom

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eimzom Newbie
eimzom
Posted

Hello there,

I am new to the forum. I have a special interest in the area of Celiac disease as my sister has been recently diagnosed with the condition and we, as a family unit, are trying to come to terms with this. I also happen to be studying for a Food Masters and this, coupled with my sister's condition, has sparked my interest in celiac disease.

So, my question is whether or not you have found membership of the support group to be beneficial in terms of coping with the condition?

Thank you :)

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Jestgar Rising Star
Jestgar
Posted

Do you mean this particular board? Or for the people that have a local support group they're in contact with?

mamaw Community Regular
mamaw
Posted

There are many celiac do-gooders trying to help people but even tho intentions are in the right place, they haven't a clue on how to properly help another celiac. Because some cheat & think its okay, others just don't have enough current info &go with hear-says..

On the other hand if you can find a support group with a seasoned true to diet celiac that is willing to help you through the ropes with up to date info & is very strict, then go for it. It will make the journey easier,

Online support groups. This group has many knowledgeable, trustworthy celiac on board. But as always some things you must weigh yourself as being correct.. New celiac people also love to give info which is wonderful but again I would look for a seasoned celiac to follow info...

The main goal is knowledge&CORRECT knowledge....current info....

When others comment about for an example: oh I love Taco Bell & the tacos ,hardshell is gluten-free so they tell you-- good to go & eat them. In reality the shell is gluten-free but the taco meat contains gluten so not good to eat...

The diet isn't learned overnight as most of us understand it is a daily learning process to get it correct. Many issues like CC & hidden gluten...

With your background & plenty of research you could be a great asset to the gluten-free communiutydown the road...

Kuddos to you for wanting to learn& help your sis....

Bubba's Mom Enthusiast
Bubba's Mom
Posted

So, my question is whether or not you have found membership of the support group to be beneficial in terms of coping with the condition?

Thank you :)

This forum is my only support group. When I was DXed the Dr. said "you have Celiac disease. Don't eat gluten. Look it up on the internet." There was no paper given to me explaining the diet, or foods to avoid. Certainly no info was given to ensure I had a safe kitchen and how to avoid cc.

I didn't understand what was happening to me, and my family didn't either. Even the Dr.s I've seen don't seem to know much?

Having a way to connect with others that are living gluten-free and know the emotional side of it, along with the physical, has been a life saver for me.

red island Newbie
red island
Posted

this forum has been invaluable to me as a fairly recently diagnosed celiac, from strange symptoms to cc issues,all have been answered by people on this forum.

I have recently found a local group and this has also been very helpful because they can address local issues like which stores carry gluten free products and where you can get a good deal (saves alot of running around).

dilettantesteph Collaborator
dilettantesteph
Posted

I found a support group that has been responsible for my return to health. That wasn't easy since I am sensitive to extremely low levels of gluten. A lot of the things that apply to a typical celiac don't apply to me.

  • 4 weeks later...
1974girl Enthusiast
1974girl
Posted

I went to one support group meeting so far. It was ok but nothing earth shattering.

positive: we could ask questions about anything and someone in there would have an answer, great coupons, my child got to meet another child with celiac!

negative: some answering were self diagnosed and told me they had negative blood and neg. biospies so I wondered if they really had it or not.

They did have a homemade gluten-free soup tasting that day but I was not about to trust people I don't know with my kid's health. I don't know how they prepare it!

I want something positive (you can do this...this is not going to define you....you can still be normal) and mostly it was. Only one lady broke down crying. I don't want a support group where everyone talks about how hard it is and poor pitiful me. We are there for my child. She is only 11 and I want her to see that she can do this!

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Skylark Collaborator
Skylark
Posted

This forum is my support group. I've found gluten-free products and restaurants I wouldn't have known about otherwise. :) I also feel less alone knowing there are so many other celiacs out there.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

There is no support group in my city. There was one at one time, but they quit getting together. I thought it could be a link to finding local Dr.s that are familiar with treating Celiac patients?

I can see where having a way to meet other kids with Celiac might be a nice benefit if I had kids?

This forum is my support group! Tons of knowledge, tons of support. Lots of info on food sensitivities,testing, the latest news about Celiac, breaking down what various test results really mean, recipes, friendship, how to handle eating away from home or social functions, etc.

If I'm having a bad day, and there's a post that "hits a little too close to home", or I don't have the energy to post the lengthy reply a question would need, I can skip over it and not respond. Probably couldn't do that with a group meeting in person? ;)

I can visit with others when it's convenient for me. It might be first thing in the morning, or maybe at night? Every day..or every other day, I can visit in my PJ's. :D

In the end, I think we all need to have a way to connect with others dealing with our same issues? Others that haven't/aren't going through it just don't understand? I think we all need validation from time to time too? :D

  • 4 weeks later...
anabananakins Explorer
anabananakins
Posted

This forum has been my support group and immeasurably beneficial to me. It's wonderful knowing that other people understand I feel, people who can help with practical details and just knowing that they've survived this too. If I hadn't received such encouragement to trial the gluten free diet after my testing was all negative, I would never have discovered how much better I could feel. Where the doctors were all "you tested negative, gluten can't hurt you, too bad you feel sick!" people here calmly told me that negative results were common but if I trialled it 100% (no 'gluten light') I could see how I felt. I don't think I would've committed without that combination of encouragement and example that they did it and so could I.

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      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
      Are Lindt chocolate balls gluten free?

      By trents · Posted

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      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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
      My only proof

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    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      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 
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