New To The Forum, Never Done This Beforerefractory celiac 6mp prednis
Posted 30 May 2013 - 09:11 AM
Refractory celiac diagnosed 2011
Posted 01 June 2013 - 08:46 AM
hi heather - are you currently eating a gluten-free diet? many of us were (mis)diagnosed with alot of those things you listed. most of my symptoms that were thought to be caused by something else actually cleared up by eliminating gluten.
misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010
i'm down here in the well, looking back up at the hill
well, thank heavens i fell, i must look more like myself.
everyone is so kind, everyone looks like
a long lost friend of mine.... - 'up from under' - the wallflowers
have a nice day
Celiac.com - Celiac Disease Board Moderator
Posted 01 June 2013 - 10:30 AM
Welcome the forum!
There was a study posted not long ago by someone, hopefully they will show up and re-post the link. But anyway, it was about a study some med-heads did on celiacs who didn't recover on the gluten-free diet. They found that if those people went on a a whole foods diet and eliminated any trace of gluten, including so called gluten-free processed foods, that many of them recovered. They had to eliminate things like gluten-free cookies, breads and other processed foods to start the healing. That worked for some of them, but not all. Are all your meds gluten-free? You should check that yourself, and not rely on the medical people to know.
Some people with refactory celiac do better on an enteral, hypoallergenic diet. People with Crohn's also use them at times.
Quite a few people here have food reactions beyond just gluten. Nightshades, soy, dairy etc can cause many symptoms too. Have you found any additional food triggers for your condition?
I hope you feel better soon.
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 gluten-free vitamins.
Take digestive enzymes.
Avoid sugars and starchy foods.
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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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