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Hi my name is heather and I was diagnosed with celiac in 2011. I'm 34. I was since diagnosed as having refractory celiac. I see a doc at the celiac clinic at Stanford university in Palo Alto ca. I have been sick for years, tested for everything under the Sun! lupus, cancer, fibromyalgia, Thyroid disease, etc! Seen just about every kind of specialist there is! No answers other than celiac, fibromyalgia, & chronic fatigue. I feel that all my problems are pieces to a big puzzle & I just need a doc to put it all together! I have had a radical hysterectomy, a bilateral partial mastectomy, every kind of endoscopy there is X 3-4! I have days I can't get out of bed! And others I'm able to function! Constantly sick with upper respiratory infections, I have nodules in my lung, spine, thyroid & small intestine. I'm currently taking 100 mg of 6mp, 20mg of prednisone, depression meds, anxiety meds, fentanyl patch for pain & nurontin. Nothing seems to be helping! I just keep getting sicker! Just a bit of my story. Hoping to get some insight from others. Thanks for listening!

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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.  

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Hi Heather,

 

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 probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

 

 

 

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    • I'm glad I found these forums!  I will spend some more time this evening reading through them.  But I wanted to get my question out there just to see if anyone else might have answers quicker than I can sift through the forum for them.      I've been feeling terrible for about a year, and after an elimination diet last month, figured out that if nothing else, gluten/wheat is a problem.  After lots of research, I abandoned the elimination diet and added gluten back in, so that I could get tested for Celiac.   I was off gluten for 3 weeks, from mid-June until early July.  I've had it back in my diet for almost 3 weeks now.    My question is this: Since I was off gluten for 3 weeks, and now back on for almost 3, is that enough time on to yield a positive Celiac blood test, if that indeed is what I have?  All the research I've done says 4-6 weeks for a gluten challenge, but is that really necessary if I was only not eating it for 3 weeks?  I am desperate to get this testing done and over with.  I feel terrible all the time and getting through the day is a struggle.  My doctor ran allergy panels already and everything came back clear except for a mild wheat allergy.  So if nothing else, I'll have to give up wheat for sure at the end of all this.  I get the feeling she doesn't know a ton about Celiac though, so I'm doing a lot of the research on my own. Any advice or information would be so appreciated! 
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    • Hi Megan, Did the doctor test you for celiac disease?  You really shouldn't go gluten-free until all the testing for celiac disease is completed.  It is a little odd for a doctor to tell you to go gluten-free for no reason IMHO.  Did he/she explain the reason for it? Personally, I have learned over the years what I can eat safely and what I can't.  Occasionally I get hit but it is rare.  Simplifying your diet is a good first step.  Avoiding processed foods for a while and dairy also is good.  I suggest any change you make last for a month at least. Then try the food again. If you are eating 100 random ingredients/foods each day it is hard to figure these things out.  If you reduce it to a much smaller number of foods then things become simpler. Welcome to the forum!
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