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Thread: Accidentally glutened at weekend, feel so ill. Anything I can do? page 2

  1. #11
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    Activated charcoal works great for mopping up toxins from your system. I always keep a bottle around!

  2. #12
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    I just received an email with the full ingredients declaration from the butcher who supplied me with the offending item. Yesterday on the phone he had told me he thought there was wheat and barley in the list, but in fact I have just received it and the only grain (and only thing I could have reacted to in it) was oats. The allergen information says "contains gluten" but in practice, as it is only oats in the ingredients list, this probably only means the oats were not certified gluten free and may have been contaminated with traces.

    For me this means that either I react to oats as well as all the gluten containing grains (which I didn't previously think was the case although I haven't had them for months so admittedly I never had a clear picture before Primal and now I do), or that I react to incredibly tiny quantities of gluten.

    I think it probably also means I may need to consider the possibility that I might actually be coeliac, which is something I have been a bit head in the sand about. I know some people with coeliac react to all oats (and to the gluten-like protein in them) but that others can have the certified gluten free oats without problems.

    Would a gluten intolerance (not coeliac) be so bad that I could react to the tiniest trace of possibly contaminated oats in a powder mix in a butcher's item (we are talking minute traces here)? Or is it more likely that is is coeliac? Or an allergy, ie an oat allergy? Is there such a thing as an oat allergy? I have never heard of oats as being an allergen.

    I am still reeling a little from this information tbh.

    Coeliac UK's website is very insistent that if there is a suspicion of coeliac then it is vital to get a diagnosis and that it is so important that you should eat gluten twice a day for six weeks in order to be able to go through testing. Is it really this important? Could I not just avoid gluten religiously and keep an eye out for other possible complications? I can't bear the thought of eating all that gluten and being so ill.

  3. #13
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    Quote Originally Posted by freerangepiglings View Post
    Coeliac UK's website is very insistent that if there is a suspicion of coeliac then it is vital to get a diagnosis and that it is so important that you should eat gluten twice a day for six weeks in order to be able to go through testing. Is it really this important? Could I not just avoid gluten religiously and keep an eye out for other possible complications? I can't bear the thought of eating all that gluten and being so ill.
    As I understand it, yes, it is possible to be so intolerant to both gluten and prolamines (the proline-containing proteins in oats and other cereals) that people will react to very, very small amounts. Some people find that they can heal their guts enough to be able to eat these things in small amounts after a long period of excluding them completely, allowing the gut to heal, but many don't. For one of the tests for coeliac, a large amount of permanent damage to the villi is necessary for the test to come up as positive. Some G.I doctors think that asking coeliacs to eat enough grains to test positive for celiac is malpractise, because of the damage done to the guts of coeliacs from eating them.

    TL: DR Avoiding all grains as far as possible, and allowing your gut to heal is probably your best option.

    Is there any particular reason you need a diagnosis?

  4. #14
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    I love the use of gluten as a verb. Appropriating.

  5. #15
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    I think of myself as non-celiac gluten intolerant, though I have never been tested. So for all I know, at that point when I stopped eating gluten so many years ago, an endoscopic biopsy might have tested positive. I couldn't have afforded the test though.

    I react the same for gluten-free oats as wheat.

    The treatment is the same whether it is celiac or non-celiac gluten intolerance. It makes sense to do a biopsy for someone who is currently eating gluten. It makes sense to do it on their siblings, parents, or children, even though they may not be experiencing symptoms, because a high percentage of celiacs are asymptomatic. But it makes no sense to take someone who has already been gluten-free for an extended period of time and make them sick in order to diagnose that they are sick.

    Even properly conducted biopsies may have results that are false negative. Not all are properly conducted, either.

    That biopsy protocol is a relic from the time when if the biopsy showed negative, patients who reacted to gluten were told they didn't have celiac, so shouild keep eating gluten.

  6. #16
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    Quote Originally Posted by eKatherine View Post

    It makes sense to do a biopsy for someone who is currently eating gluten. It makes sense to do it on their siblings, parents, or children, even though they may not be experiencing symptoms, because a high percentage of celiacs are asymptomatic. But it makes no sense to take someone who has already been gluten-free for an extended period of time and make them sick in order to diagnose that they are sick.

    This is my instinct. I just find the alarming insistence on the Coeliac UK website a little bit disconcerting!

    My understanding (limited so far) is that the reason to get a diagnosis would be to get the automatic screening prog that coeliacs are offered - which I think includes yearly bone density screening and possibly screening for crohns and bowel cancer. you can also get gluten free nasty baked stuff free on prescription if you are diagnosed but I wouldn't want that anyway. Both the diagnosis and the screenings would be free on the NHS.

    TBH as an EDSer with known allergies already and with a very friendly, sympathetic and open-minded GP (she needs cloning!) who is happy to read things I give her and google and admit she might not know, and has bent certain protocols for me in the past anyway, I suspect she might be able to let me have the bone density and bowel cancer screenings anyway.

    I might be inclined to do a scheduled, planned challenge with certified gluten free oats at some point, just to know for sure (whether it is all oats, or just gluten-contamimated ones). But not before my holiday!

    We have recently taken my elder daughter off grains as she was having constipation and she is so much less moody and difficult without them. My younger daughter still gets sourdough rye bread if she asks for it (but we don't offer) because I want them to come with me of their own accord, not by force. I am now wondering whether I have done my daughter a disservice by taking her off gluten before getting her tested, but it would be too horrible for her to start eating them again. She would be really distressed at the thought of it - she is only 5 but she's really good at asking if anything she is offered is safe. She hated the constipation so much and has been clear of it since giving up grains and she's a sensible girl who would rather feel well than eat bread. I don't think I'd want to put her through that. She is an EDSer too.

    We both used to have milk allergies, but by avoiding triggers and nurturing our gut a bit we managed (after a few years) to outgrow them and we can both now have hard cheese and butter (though I personally only eat unpasteurised cheese).

    My husband and youngest daughter don't have any of these issues, but he is primal and she is mostly primal (occasional sourdough excepted).

    Sorry - rambling now! Thinking aloud!

  7. #17
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    Quote Originally Posted by eKatherine View Post
    I think of myself as non-celiac gluten intolerant, though I have never been tested. So for all I know, at that point when I stopped eating gluten so many years ago, an endoscopic biopsy might have tested positive. I couldn't have afforded the test though.

    I react the same for gluten-free oats as wheat.
    This is me exactly. In the last 2 weeks (I have been very low gluten for 7 years now) ingestion of rice and a samll serve of a bread product I've previoulsy tolerated well resulted in a terrible gut cramping and indigestion/almost reflux pains. Plus windy bowel and run to toot all the time. After the first i fasted for 28 hours, then ate lightly for a couple of days and felt better. After the second i realised that the less gluten/grains I eat the worse the symptoms when I eat them so I take it that my body is telling me not to do that. So I won't.

    I also dosed myself with a herbal infusion of Valerian, Carraway seeds, cardamon pads, parsley leaf, linden flower leaves, fennel seeds, rosehips, willowbark. I would have added Chamomile and wild yam but I was out of those. I made a big pot and had 3 cups over the fasting period and it really did relieve the pain.

    You may find some ease from a herbalist who can give you a specific herbal infusion for painful and cramping gut symptoms.
    Odille
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