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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

Newbie Info 101





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    • They didn't. The labs were run two and a half weeks ago and before I got confirmation on here that it should be done despite my drs saying otherwise. I was glutened the week prior anyway so it would've been high regardless.  It's all very frustrating. So I guess I'll wait five or six months and go back and demand it vs asking about it. 
    • Did they run a DGP IGA?  While your DGP can take over a year to come down, I still think you should be getting tested every six months until you see a downward trend.  I am not making that up.  Google it.   My DGP was off the charts when I was glutened last summer.  My symtoms were severe, yet at diagnosis, I just had anemia.  It took six months for all symptoms to completely resolve (rashes and hives took the longest and three month to regain dairy).  What I am saying is that symptoms for celiac disease can change.    
    • Long pause because I wanted my latest lab results and they took forever.  Cortisol, ACTH, estadiol, vitamin a and whatever else were all fine. They are retesting my thyroid in four weeks. I definitely bought the wrong product and glutened myself a few weeks back so I guess that has to wait which really irritates me. My gliadin iga ab was greater than 100 almost two yrs ago at diagnosis so I guess sometime next yr I'll redo that and hope it's down :-/. Trying to do all the right things and get bad information from doctors.  Thanks for all the info you've shared and helped me with. I've had lab work every month since May and will next month for the thyroid again. Sigh. 
    • Hi Carle, Congrats on your symptoms going away.  I did seem to have reactions to rice for a while after going gluten-free.  But after some years on the gluten-free diet I can eat it again.  So reactions can change over time. I was searching for an article on gluten in common store products, but didn't find it.  There was a group that did testing on some common grocery products like beans, rice, corn etc that we would normally consider to be gluten-free naturally.  But they found some level of gluten in some of them.  So it's not impossible to pick up something off the shelf that ought to be naturally gluten-free and find it is contaminated.  That may have happened with the rice you ate.  A quick rinse of water before using the rice might help.
    • Hi Doit, The reference ranges to the right of the test result show the values the result ought to be in for normal readings (no celiac disease).  Your results appear to show no higher than normal results that I can see. However, you aren't following the recommended process for celiac disease blood testing.  The blood test is supposed to preceded by 12 weeks of daily gluten eating.  That is generally enough time to cause a sufficient quantity of antibodies to build up in the blood stream to be detectable by the tests. Not having antibodies in the blood stream doesn't mean you aren't being damaged.  People with DH (dermatitis herpetiformis) sometimes test negative on the standard blood tests.  My theory is possibly because the antibodies are concentrated in the skin instead of the blood.  In gut damage, it is possible the antibodies are concentrated in the gut, instead of the blood.  After some time they show up in the blood also.  The thinking is the antibodies go where the work is.  Anyway, theories aside, it takes very little gluten to kick off an immune response.  Those antibodies are not aimless soldiers.  They start doing their work and destroying gluten and gut tissue even if you don't feel symptoms.  Did you know there are some people who have no GI symptoms of celiac disease but still have it?  They call that silent celiac.  So going by symptoms is not a good way to judge actual damage in the gut. You are wise to go in for followup testing, but the followup testing is hopefully to show compliance with the gluten-free diet, and lower antibody test results.  Have your close family members been tested for celiac disease?  It sounds like they should be.   There is a 5% higher chance of them having celiac than the general population. Welcome to the forum!
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