Gluten Intolerant - but not Coeliac x2

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herika, Aug 27, 2:13am
contd... Indiscriminate, repeated gluten indiscretions may eventually cause serious physical and neurological damage/psychiatric symptoms and study indicates higher mortality rates. Dr Rodney Ford is such an authority on the subject of gluten intolerance (sensitivity) and its great we are getting all this new information. :)

herika, Aug 27, 2:16am
I found this quite informative: "Dr. Rodney Ford of New Zealand points out that if the nerves in an organ or system are damaged in some cases there may be little discomfort or few symptoms until there is serious dysfunction or organ failure. The very nerves that give warningare themselves damaged/silenced. But slowly dysfunctional nerves in an organ, for instance, affect the health and function of that organ or system. This phenomenon of silenced nerves may be partly why many folks who still think they are fine discover they have the gluten syndrome only after a relative is diagnosed".

herika, Aug 28, 3:08am
bumping for all you lurkers :)

herika, Aug 29, 7:25am
bumping for Saturday evening :)

herika, Aug 30, 7:49pm
This is what Dr Ford says about a child having soiling accidents: Dr. Ford cites a case in his practice of an encopretic school aged child (the child experienced soiling accidents long past potty training age). After the gluten free diet was introduced, this distressing problem resolved. The nerves in that section of the digestive tract healed and the child knew when it was time to visit the toilet. I thought anyone who's child is having this problem may be interested... :)

herika, Sep 1, 6:34pm
It has taken a long time but finally all these new findings will mean gluten intolerant/sensitive, non Coeliac people will be able to get the help they need (and Coeliacs will be able to help their condition too) :)

herika, Sep 4, 4:43am
bumping for Friday evening :)

herika, Sep 5, 4:00am
This also from Dr Ford's website: Practitioners suspect these other cross reactive foods may keep gluten antibodies running high even on a strict gluten free diet, or they may react on their own and produce symptoms similar to the gluten free diet. Foods believed to cross react include wheat, barley, rye, corn, soy, milk, eggs, yeast, coffee, sesame and chocolate, and in some cases, oats. Even some non gluten grain substitutes may rarely trigger reactions in a few people, including buckwheat, quinoa and millet. :)

herika, Sep 7, 12:45am
that explains a lot for me and hopefully will be helpful to others :)

dan1st, Sep 8, 10:03pm
I tried gluten free to see if it helped my bloating. I found that I wasnt so tired and had better clarity however I was so constipated for the six weeks that I went to the doctor 3 times. Since the earthquake because of shops being closed I have eated normal bread etc and have found that Im back to regular. Has anyone else had this issue and if so what did they do?

herika, Sep 9, 8:36pm
From Dr Fords website: Overwhelming clinical evidence of gluten sensitivity has led to the adoption of the “gluten-sensitive diagnosis” by the Department of Paediatrics, Christchurch Hospital. The members of this Child Health Team include three paediatricians and seven general practitioners. Their guidelines are posted on their website http://www.healthpathways.org.nz.
The document states that if you have symptoms of coeliac disease (such as: poor growth, persistent gastrointestinal symptoms – diarrhoea, abdominal pain, bloating, constipation, vomiting – irritability, or iron deficiency), then a gluten-free diet might help, whatever your blood tests results might show. If you have an abnormal tTG (the marker for gut tissue damage), then you are advised have and endoscopy and then go gluten-free. On the other hand, if you have a normal tTG, then you are encouraged to give a gluten-free diet a go anyway – as you might be gluten sensitive.

herika, Sep 10, 8:49pm
Dr. Ford says that this change of stance will come as a great relief to the many gluten-sensitive sufferers, who previously had been given no support for taking the gluten-free option. He says that a lot more research is needed to better understand how gluten is affecting so many people. His research has found that about one in ten people have this sort of adverse reaction to gluten. He is currently conducting a series of double blind challenges to better document the extent of gluten sensitivity children.

herika, Sep 11, 1:36am
bumping hope this info helps people :)

gadgetman, Sep 11, 5:15am
To confuse issues There are people who can have gluten as long it is not from wheat. I mean wheat intolerance. I am happy to eat Spelt, barley, oats and rye as long it is not contaminated with wheat.

herika, Sep 12, 12:15am
I dont thinkthat confuses anything You are just stating a fact in relation to what you can and cant eat. Everyone is different in some ways as to what they can and cant eat. :)

herika, Sep 13, 6:41pm
bumping for Monday :)

herika, Sep 15, 7:34pm
Its so great to have all this information available now. Hoping this thread will be of help to anyone coping with a gluten intolerance of any sort :)

herika, Sep 16, 8:27pm
bumping for Thursday :)

herika, Sep 16, 8:50pm
Even Coeliacs have to be very careful: 'A breadcrumb won't hurt someone with coeliac disease'... . MYTH.
Even very small amounts of gluten can be toxic to people with coeliac disease. Taking sensible steps to avoid cross contamination with gluten is therefore important.

Top tips include:
keep cooking utensils separate during food preparation and cooking,
avoid frying food in the same oil that has previously been used to cook gluten containing foods,
use a clean grill, separate toaster or toaster bags to make gluten-free toast,
use separate breadboards and wash surfaces thoroughly. This information was taken from the NZ Coeliac Society website :)

earthangel4, Sep 17, 6:03pm
and this one, some good knowledge here

herika, Sep 17, 7:47pm
Published literature proposes that many gluten syndrome patients do NOT have elevated tTG (a commonly used screener), AND there are many significant gluten related antibodies that are not checked in today's standard tests, including gluten itself.
a. There are gluten related antibodies (gluten itself, gluteomorphins, wheat - the whole kernel, and IgMs) which early investigationsindicate many patients have that are not checked in common "celiac "panels. Standard tests usually only test tissue transglutaminase (tTG-IgA, IgG) and sometimes gliadin (AGA-IgA, IgG) . Some researchers believe tTG (today's screener) is NOT always elevated in all gluten syndrome patients.

herika, Sep 17, 7:49pm
Some researchers say other foods may cross react with gluten antibodies.
Practitioners suspect these other cross reactive foods may keep gluten antibodies running high even on a strict gluten free diet, or they may react on their own and produce symptoms similar to the gluten free diet. Foods believed to cross react include wheat, barley, rye, corn, soy, milk, eggs, yeast, coffee, sesame and chocolate, and in some cases, oats. Even some non gluten grain substitutes may rarely trigger reactions in a few people, including buckwheat, quinoa and millet.

herika, Sep 17, 10:21pm
"Some researchers, professionals and patients find there are many serious manifestations of The Gluten Syndrome other than "villi damaged celiac disease" and IgE "wheat allergy". Damage is believed in many cases to focus in other organs or systems beside, meaning not necessarily including, intestinal villi, Therefore villi biopsy may be negative but damage may be to other tissues, organs, nerves, etc". Im finding information like this so valuable and it explains so much to me, I hope it helps others too :)

janny3, Sep 20, 10:47am
too good to lose BUMP just for you Adrienne!

herika, Sep 20, 6:42pm
thanks janny :)