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Thread: September Roll Call

  1. #1

    Cool September Roll Call

    *Looks around* Man, is it dusty and empty in here. Hellloooooo!!! Anyone home??!!

  2. #2
    Community Member
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    Hi. I'm here. :) I really miss the folks at gfab, don't you ?

    How's it going ?

    I wanted to post a question about how well people are healing via the gf diet. Does anyone have details on this ? Do auto immune diseases associated with gluten resolve too ?

    I'm still struggling with orthostatic intolerance and cognitive problems after 9 years on an elimination diet.

    Tx .. marcia

  3. #3

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    I read way too much about people not healing on the GF diet.

    Most recently is this analysis which states that the safety of 20 ppm has not been proven. I agree wholeheartedly.
    http://www.csaceliacs.org/effective_research_review.jsp

  4. #4

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    Hi Marcia It's been too long, and I agree, I miss the friendliness of the old boards. I don't know about GF and autoimmune systems--Sorry. I hope it resolves soon. Good luck.

    Hi Stephanie :hug: Thanks for the info...It's good to see you again, too.

  5. #5
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    Thanks Steph but I knew about the gf diet not being gf enough for some. I was 99% paleo from 2008-2013 because I was super sensitive.

    My auto immune diseases didn't resolve so I added gf processed foods back into my daily diet in Jan 2014. So far I'm not getting facial tics , a rash or worsening myoclonus from gluten cc. kow.

    Possibly because the gf foods I'm eating are safer.

    I'm curious about the recovery rate of auto immune diseases post gf diet. I have the dq2 gene so obviously gluten has always been a bad idea for me.

    I found an article by Dr Hyman on healing auto immune diseases. In that article he seemed optomistic about diet and treating bad bacteria, candida and heavy metals reversing auto immune diseases.

    Granted I could've treated for more but exhaustion, orthostatic intolerance, money, etc held me back.

    Gotta rest. Marcia

  6. #6
    Community Member
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    Hi purpel1. You're right. It's the freindliness I'm missing. We were all on similar missions so it was easy to relate. Tc .. marcia

  7. #7

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    Quote Originally Posted by Marciab View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Thanks Steph but I knew about the gf diet not being gf enough for some. I was 99% paleo from 2008-2013 because I was super sensitive.

    My auto immune diseases didn't resolve so I added gf processed foods back into my daily diet in Jan 2014. So far I'm not getting facial tics , a rash or worsening myoclonus from gluten cc. kow.

    Possibly because the gf foods I'm eating are safer.

    I'm curious about the recovery rate of auto immune diseases post gf diet. I have the dq2 gene so obviously gluten has always been a bad idea for me.

    I found an article by Dr Hyman on healing auto immune diseases. In that article he seemed optomistic about diet and treating bad bacteria, candida and heavy metals reversing auto immune diseases.

    Granted I could've treated for more but exhaustion, orthostatic intolerance, money, etc held me back.

    Gotta rest. Marcia
    OK then. The problem then lies in knowing where contamination might occur. I can get gluten tests that are used for certification by the GFCO since I have my own chemical contracting business. I have found gluten in unexpected places like strawberries and mushrooms, presumably because wheat straw was used in their culture. Studies have found gluten in ground spices: http://allergicliving.com/2013/08/28...ten-in-spices/
    and supplements: http://www.biomedcentral.com/1741-7015/11/222
    and coffee: http://www.takepart.com/article/2014...ee-adulterated
    Your problems may stem from continued trace gluten contamination in your diet.

  8. #8
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    Bummer. Tx Steph. I only use Mc Cormick plain spices so I think or at least heard those were ok.

    I knew about tea but not coffee. I've been off coffee most of the time from 2005 on. It just makes me jittery.

    I was as careful as possible, mostly paleo, for about 5 years (after becoming gfcfsf etc free in 2005) and just gave up on it back in Jan 2014.

    But I'm not sure my auto immune diseases are just from gluten. Several of my symptoms including ataxia and white lesions resolved but not all. Dr Hyman said his patients need other treatments as well.

    I may be dealing with physical damage and/or auto immune diseases too. My lung scarring, Paget's, and lbbb are physical. My hyperinsulinemia, orthostatic intolerance, low elastase, etc. Could be either. It's confusing.

    I have a history of leaky gut and have previous stool tests that show parasites, candida and low elastase (digestive enzyme). I never did get the candida and parasites under control despite my best attempts. Granted I'm exhausted and my orthostatic intolerance forces me to lay down regularly if I want to think.

    I was just wondering what all this means. I've met about 60 celiacs now and we're certainly a mixed bag. Some recover with minimal effort while eating cross contaminated gf foods daily and some don't. I'm wondering about those who don't.

    Tc .. marcia

  9. #9

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    I have had positive results with a 5 ppm detection level with some samples of the spices that you mention. I don't think that anyone really knows about where contamination is and isn't. There just aren't enough tests being done and they are not sensitive enough. We have varied degrees of sensitivity and I think that is why some of us have continuting symptoms. Some of us have levels of sensitivity greater than the levels of contamination in our food.

    Even being as careful as possible, it is likely that some of the most sensitive still don't have diets that are good enough. At some point maybe symptom control is the best that we can do. I don't know. I've started taking digestive enzymes and that's helped a lot with my worst symptoms.

    There are two theories about other AI diseases, one is that they are caused by celiac damage and the other is that there is a genetic link. I don't think that they know yet. http://www.medscape.com/viewarticle/547107_

    They have made enormous advances in the understanding of this condition since I was diagnosed back in 2007, but there is still so far to go. Meanwhile all we can do is the best we can.

  10. #10

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    Quote Originally Posted by Marciab View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Bummer. Tx Steph. I only use Mc Cormick plain spices so I think or at least heard those were ok.

    I knew about tea but not coffee. I've been off coffee most of the time from 2005 on. It just makes me jittery.

    I was as careful as possible, mostly paleo, for about 5 years (after becoming gfcfsf etc free in 2005) and just gave up on it back in Jan 2014.

    But I'm not sure my auto immune diseases are just from gluten. Several of my symptoms including ataxia and white lesions resolved but not all. Dr Hyman said his patients need other treatments as well.

    I may be dealing with physical damage and/or auto immune diseases too. My lung scarring, Paget's, and lbbb are physical. My hyperinsulinemia, orthostatic intolerance, low elastase, etc. Could be either. It's confusing.

    I have a history of leaky gut and have previous stool tests that show parasites, candida and low elastase (digestive enzyme). I never did get the candida and parasites under control despite my best attempts. Granted I'm exhausted and my orthostatic intolerance forces me to lay down regularly if I want to think.

    I was just wondering what all this means. I've met about 60 celiacs now and we're certainly a mixed bag. Some recover with minimal effort while eating cross contaminated gf foods daily and some don't. I'm wondering about those who don't.

    Tc .. marcia
    Have you tried a plant based diet? I know there are several websites and blogs dedicated to Gluten free and Vegan diets. Here is what came up on Google. I hope this helps. Good luck.

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