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Thread: September Roll Call

  1. #11
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    Hi steph. They're certainly not making it easy for sensitive celiacs are they ?

    I had high gluten antibodies in my stool from cross contamination so I'm an over responder.

    Or at least I was. I'm not sure now that I'm not getting the blistery rash on my stomach or facial tics from gluten cc.

    I looked for an article on how effective a gf diet is for the auto immune diseases associated with celiac but google didn't understand the question. Lol. I wonder if the gluten summit presenters know this by now.

    Tc ... marcia

  2. #12
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    Hi purpel1. I tried a vegan (veggies, fruits and legumes/ limited grains) diet for 6 weeks but became too weak to function. I need meat.

    The paleo diet is great for me but too much work. I'm currently looking at making it easier.

    Tc .. marcia

  3. #13

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    Quote Originally Posted by Marciab View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi purpel1. I tried a vegan (veggies, fruits and legumes/ limited grains) diet for 6 weeks but became too weak to function. I need meat.

    The paleo diet is great for me but too much work. I'm currently looking at making it easier.

    Tc .. marcia
    Ah, ok. I hope something comes up and works out for you.

  4. #14

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    Hi! Yeah, kind of a ghost town here. I miss GFAB & glutenfree.com forums days as well. Gluten-free is in a very different place and space now days.

    Not much different in my world. Still active online - almost exclusively Facebook. Still GIG support group branch mgr. Writing "The Gluten-Free Kingdom" for GIG's quarterly kids newsletter has been keeping me busy.
    Al

  5. #15

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    Times are changing quickly. Is everyone on Facebook and Twitter now? I don't do much Facebook and even less Twitter. Forums are much changed. I agree that things are not easy for the more sensitive celiac. It is basically impossible to know what is going on. You really can't tell if your are reacting to something because it has gluten in it or for some other reason due to having had gluten in something else which has made you more reactive to everything. We need better analytical detection methods, less expensive and more accurate.

    I don't know of any articles about GF diet and autoimmune diseases. I did read a review where they commented on not even being sure if the association was from gluten ingestion and celiac disease or linked chromosomes in which case it would likely be independent of diet.

    I miss GFAB where there were two that were so good at reporting on the research.

    My personal experience is with Sjogrens syndrome and arthritis. The symptoms from those things flare up significantly when I'm glutened and go away when I'm not. There seems to be more of a time delay with those symptoms than the obvious diarrhea and irritability. I am one person and those are subjective observations. Feeling sick sucks and not knowing what to do makes it worse. It is no wonder there is such a big quack industry out there and it is so hard to tell what works and what doesn't.

    Being well for me is a lot of work. I grow a lot of food myself because that way I can be sure that it's safe. I also enjoy gardening and fresh food. It's worth the effort, but I'm hoping to be able to make things easier. It is quite possible that getting better is unrelated to all this careful food sourcing. I don't think so, but I do have my mind open to that possiblitiy.

    Have you tried a simple unprocessed diet like in the Fasano Hollon paper? That one at least was shown to work in a published study. It's also a lot like what works for me.

  6. #16
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    Hi Al. Good to hear from you. Your writing sounds interesting.

    I moved recently and am attending a new gig group. Going to gf meetings has been a real eye opener for me. I'm happy for all those who've discovered how much better they feel gf. I'd love to see people diagnosed sooner.

    Tc .. marcia

    Ps. Would love to hear from the others.

  7. #17
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    Hi Steph.

    I'm not much of a facebook person either. I was but stopped because it takes too much time.

    Knowing that I'd been glutened was easy when I was eating paleo 99% of the time. I'm trying to get back to it but it's just impossible for me to keep enough paleo foods on hand.

    My auto immune symptoms are similar to yours. I don't get diarhea from gluten cc unless I eat waaaay too much at one time. I've only experienced it a few times, 5?, since going gf in 2005. I get a few blistery incredibly itchy bumps on my abdomen and some neuro symptoms like myoclonus, ataxia and facial tics.

    It's great that you grow your own food. More people should or at least go to farmer's markets. I can't keep up with plants.

    I'll check out the diet in the Fasano paper. Tx.
    I'm actually working on getting back on the paleo diet. It's just tough to do right now.

    Tc ... x

  8. #18

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    I agree that it is way too hard for super sensitives. I'm not sure how much of what I do is absolutely necessary. I was so sick so often when I was figuring this stuff out and I haven't had time to recheck everything. Certainly growing your own and buying from farmer's markets is great in season. Trying to get enough canned and frozen for the winter is a lot of effort and not possible for most. There does need to be an easier way than just being sick. I am hoping to be able to find that. For now I am happy to have a found a way to stop being sick so often. I still get large amounts of uncontrollable diarrhea way more often than I'd like. The system is much more geared to making it easier for the average celiac than doing much of anything for the more sensitive ones. I'm tired of people telling us that we are paraniod when we are genuinely sick.

  9. #19
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    I think you're definitely on the right track. I'm trying to get back to a grain free / paleoish diet.

    I stopped listening to those people who don't understand what being super sensitive is all about. And I found going to support groups that I'm not the only one with this problem.

    I don't know if dgl and digest spectrum combined or which one stopped me from being super sensitive but my reactions stopped a few months after I started both.

    I'd been paleo since 2008 but cheated about once a month when i ran errands. It was unusual for me to cheat. Now I'm eating rudi's bread daily. Some pancakes made from king arthur pancake mix. And some potato chips. I don't stray from these.

    Spectrum has xylanase in it and that breaks down biofilms. It has other important ingredients too

    Dgl restores damaged gut.

    Have you tried s boulardii for the d ? I use jarrow brand. It works for me everytime. It works on gastritis sometimes too. It's been shown to be effective for c diff but I'm not sure if it takes over or kills it or just stops the d caused by c diff.

    Gotta eat. Tc ... marcia

  10. #20
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    I don't see an edit feature.

    I was going to say that I've been eating gf processed garbage since Jan 2014 and still haven't felt any worse than I did.

    I'm not getting my blistery rash or neuro symptoms but I'm getting a different rash that I think is just an allergy. It comes and goes within a few hours.

    I'm going back to avoiding gf garbage tho because it's dangerous for me. I'm going to miss it. Lol.

    Tc .. marcia

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