Gluten free

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  • workinonit1956
    workinonit1956 Posts: 1,043 Member
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    @MikePfirrman that link you posted-I remember it well! I was part of the moderating team there for 8 + years and anytime the enzyme topic was brought up, things would sometimes go downhill quickly. One thing is certain-enzymes do nothing for an autoimmune reaction.
    There are many people who choose to just remain gluten free without a diagnosis. Some for insurance reasons like yourself and others simply don’t want to go back on gluten for testing because they feel so much better off of it. The treatment is the same either way. There are potential serious health concerns for Celiacs, which have been covered here already, (anemia, brain fog, peripheral neuropathy, vitamin and mineral deficiencies, edema, depression, anxiety, etc) with the most serious being intestinal lymphoma. FWIW, The last time I saw my gastroenterologist in 2016 I was told they didn’t feel the need for me to have any more follow up endoscopic testing (I was diagnosed in 2005). Celiac is an autoimmune disease, and irregardless of symptom severity, people with it need to be scrupulous about their diet. In other words, you can’t go by how severe your reactions are. I’ve seen people who were incapacitated by their symptoms and a woman who had absolutely none. She was tested only because her sister was diagnosed and she came up positive.
    Best of luck with everything!


  • smolmaus
    smolmaus Posts: 442 Member
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    MikePfirrman wrote: »
    I do think it would be foolish to use any enzyme if someone were truly Celiac and then go out and eat bread or pizza and pretend a pill will help them. That's not (I don't think) the pill intent, though I'm sure some people (like the guy in this thread below) think that. I think they are mostly for cross contamination issues. Whether they work or not isn't up for me to decide. Perhaps it's placebo but I've never had a reaction with taking enzymes along with really watching what I choose in a restaurant and consulting with the kitchen/servers. Again, I don't eat out often and make sure I stay GF, so perhaps it's all placebo but this thread seems to indicate others that truly have strong gluten sensitivities do the same and I'm not unique.

    https://www.celiac.com/forums/topic/22864-gluten-ease/

    Those other issued you mention do concern me as well and that's why I asked the question. It's certainly something longer term to consider. Thanks.

    Even if they do harm at all I am just ethically opposed to the marketing of unproven and largely unregulated medications. Particularly for "my disease" if you know what I mean.

    Just because you've had no reaction means nothing, there could have been no cross contamination, there could have been but not enough to cause a reaction, you could be having a reaction and not noticing, you might not even have celiac or a gluten intolerance because you haven't been tested. You could have a FODMAP sensitivity or wheat allergy or any number of things that wouldn't have been triggered anyway.

    Please don't buy the snake oil pills.

  • MikePfirrman
    MikePfirrman Posts: 3,307 Member
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    Thanks, still trying to learn. A lot to think about. TBH, I've been mostly focused on my wife's health for around 5 years. I've largely ignored anything related to my health because since going GF, I've felt pretty good and have seen signs that I might have been more sensitive than I'd like to admit in the past (probably TMI, but things years ago like bloody stools, etc). I'll probably look into it soon. Sorry to ask so many questions on a thread that I didn't start to the OP!! I apologize for that!
  • Silkysausage
    Silkysausage Posts: 502 Member
    edited July 2018
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    Yes, just found out I have non coeliac gluten intolerance after 4 years of being told I have IBS. Previous coeliac test came back negative, hence why I carried on eating wheat.

    As of yesterday I've cut out all wheat, oats and brewers yeast (B12) and my stomach is no longer in pain or the size of a 6 month pregnant woman!

    This is only the start, it can take months to a year for your body to expel the proteins from years of eating gluten.

    The hardest part has been the stomach distension and exercise fatigue, so abnormally sweaty and tired I now take electrolytes before weight lifting.

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