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

What Has The Support Group Done For You?

eimzom

Recommended Posts

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 :)

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

Celiac.com Sponsor (A8-M):


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!

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

Celiac.com Sponsor (A8-M):


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.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,676
    • Most Online (within 30 mins)
      7,748
    AW1851
    Newest Member
    AW1851
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
×
×
  • 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.