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Returning To Celiac 11 Years Later For Help

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Posted 15 March 2013 - 12:15 PM

to be honest i havent tried doing a proper gluten trial yet, im waiting til i get a few days off work - just in case.


i have accidently glutened myself a few times, once with a tin of curried beans and the only symptoms were going icy cold and shivering ,feeling a bit spaced out, feeling really tired an having to go to bed early. im more of a night owl than an early bird lol, but as i said i dont have the stomach problems. pretty mild compared to others reactions, so i dont know exactly how much gluten was in the food i ate or if the amount even matters. apparently the longer you are gluten free you can have more severe reactions.

so sorry cant really answer your questions coz i really dont know myself.

my main symptoms now is the joint pain and that does come back if i eat the wrong things- potato,s i think but im still testing it out...

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Posted 15 March 2013 - 12:50 PM

Hi Cisco,


A little or lot of gluten symptoms?


I can't answer for myself since I haven't eaten a lot of gluten in over 5 years since I started the gluten-free diet.  But  a little does cause me symptoms that aren't real fun.  Trying to compare your symptoms to others is somewhat iffy although perfectly normal to want to do.  It is a way to help understand what's happening to yourself and others.  The thing is, with celiac disease there is a whole universe of possible symptoms and reactions, so yours may match 1% of the celiac worlds people symptoms and not any of the 99% others symptoms.


GI symptoms vs none?

Some people have what they call "silent celiac".  They have no symptoms at all.  Usually their celiac disease is discovered almost by accident.  Probably most times it is never discovered.  Not having symptoms doesn't mean their bodies aren't being damaged though.  They are.


Stool color and consistency?

We had  a thread some time ago about stool color.  A very exciting topic indeed! :D  The colors people reported were yeller, green, black, white,  and I think there was fruity tooty polka dot one in there somewhere.   It was quite variable.  Green can be a gallbladder issue, or too much iron, red is blood in the colon, black is blood in the small intestine, white is fat mal-absorption, yeller is something I don't remember.  Well, I think that is half right anyway.  Best to look it up though,  There are listings on the WWW.  Consistency is all over the board also.


Gluten ataxia and other symptoms

You didn't ask about this but is something you should be aware of.  Gluten ataxia is when the gluten antibodies attack the brain and people develop problems with muscle coordination and other things.  Sometimes these people have no GI symptoms at all.  Some people get joint pain or skin rashes DH (dermatitis herpetiformis), migraines, or muscle pain or other non-GI symptoms.  There are many, many possible symptoms, and they aren't all in the gut.  Sometimes people also develop other autoimmune disease in addition to their celiac disease.  If you search the web for "celiac related condition" or "associated condition" you can find lists.


NCGS and villi damage?

NCGS is still not well understood.  It was only confirmed to exist last year 2012.  What the long term affects of NCGS are on the body and the gut is unknown at this point.  There are no long term studies on it.  It seems to be a different immune system response from celiac though.  Celiac is a result of the adaptive immune system responding, NCGS is a response by the innate immune system.  How that innate immune response affects peoples gut over time is an open question.




Some reader's digest condensed version tips are below.


Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

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What's For Breakfast Today?

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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

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