Discussion Group/Forum?

Hello,

Kerry brought up an idea I’m looking into: A discussion group. I had thought it would be nice to have a forum, but didn’t think there were enough members or interest yet. Please let me know if you’d use a discussion group, and in the meantime, I’ll see how long it will take to set up. I can probably have it up by the end of the weekend if there’s interest.

Let me know what features you’d like to see.

Amber

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14 Comments on “Discussion Group/Forum?”

  1. Debby Davies says:

    Sounds good, anywhere we can share experiences and knowledge would be great. Thanks Amber and Kerry

    Like

  2. Becky says:

    Yes I think a great idea

    Like

  3. Laurie says:

    Good idea , yes I’m in , I am always learning . Thanks ,

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  4. Stephanie says:

    Great idea! This is horrible to suffer from! Questions and answers would really help ppl with this allergy!

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  5. Melissa Thompson says:

    Great idea. Drs don’t take us seriously so sharing our experiences and knowledge will be beneficial.

    Like

  6. Judy Eastman says:

    I totally agree! I am sure there is a lot we can teach each other.

    Like

  7. Lesa perry says:

    Yes let me know. My husband almost died twice from PEG . He was sent to a special allergists for a clinical trail study but it didn’t help. The doctors didn’t even tell him to stay away from PEG in lotions or food. He almost died when he took a steroid shot and when he took a colon prep . His blood pressure was 60 over 20 when the ambulance arrived.

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  8. Donna Alspach says:

    I also agree. We’ve done all the research we can, now it’s time to learn from the experiences
    of others.

    Like

  9. Emily Lang says:

    Yes! A facebook group would be perfect! A FB group would have a place for “files” where we could have an updated list of all the code names for glycol. I’m working on putting together a comprehensive list. It would also enable us to have a place to post questions and get reasonably quick responses.

    Like

    • Hi Emily,
      I’ve been setting up a site with a discussion board. I expect it should be ready to go within the week. I considered a Facebook group, but anything you put on Facebook, belongs to Facebook. I worked for an organization that setup their website on Facebook and Facebook changed the rules for groups and closed the group. All the contacts, all the info – gone.
      So it’s a great platform and very convenient, but the rules can change at any time and and sometimes they do.
      I’ll post here when the site is finished. For an updated list of polyethylene glycol, or any chemical compounds, check out this post.

      Amber

      Like

  10. Debby Davies says:

    I first typed this in the section on check the progress of the discussion forum but figured it wasn’t the right place so have reposted it here.

    Hi all, has anyone had a section to sterol or stevia glycoside? Stevia is a “natural” sweetener.I recently bought a supplement and I checked with the company making it that it didn’t contain PEG. Within a few hours of having it I had a sore mouth, heart burn and then the next day diarrhoea. They have sent me a list of the inactive ingredients and this is the only one I think could be affecting me.
    This is my 3rd reaction like this in the last few months, one of which was to an over the counter anti-inflammatory tablet which my pharmacist had confirmed had no macrogol in it according to a reputable drug information site. When I had the reaction I contacted the company making it and they confirmed that it DID contain macrogol!! Apparently where I live macrogol is not a declarable excipient. It is listed on shampoos, toothpastes, deodorants , creams but NOT in over the counter supplements or medications.
    I’m finding it very stressful as with each exposure like this it takes several weeks for the heart burn and digestive upset to settle down, it seems there’s no easy way to avoid it even with checking with drug companies.
    Thanks
    Like
    Reply
    Debby Davies
    March 16, 2017 at 5:48 am
    Hi again, after much research I found several articles where they use polyethylene glycol or propylene glycol in the production of stevia substances so I suspect thats why I reacted to the supplement sweetened with stevia glycoside. So be careful if you’re using things sweetened with stevia, its not the stevia itself I reacted to.
    Thanks

    Like

  11. Pernilla says:

    I would love a discussion group. This allergy is both life threatening and a struggle.

    Like


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