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Gluten Free For 6 Years, Symptoms Back

joint pain celiac refractory celiac fatigue

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Posted 26 March 2013 - 02:16 PM

I am hoping that some of you can help me figure out what's going on. I was diagnosed with Celiac Disease 6 years ago ( I am now 20 years old). Back then my symptoms were mainly gastrointestinal, such as bloating, gas, diarrehea, and very bad stomach cramps. I felt extremely sick and got to the point that I was afraid to eat anything. I lost almost 15 pounds within 6 months. After finding out I had celiac, all of these symptoms went away and I regained most of the weight I lost. I felt a lot better. 
For the past year, however, I have been experiencing incredible fatigue and joint pain. The pain started in my hands but recently it has spread to nearly every joint in my body and the fatigue has worsened. I went to a rheumatologist who did some test- all of which were negative. She had a strong feeling it was connected to celiac disease. I went back to the GI and he did another endoscopy. Since I get so sick from eating gluten he decided it was best if I remain gluten-free and he would see if a.) I am doing a good job on the diet and/or b.) if I have refractory celiac. I had the endoscopy done last week and I am anxiously awaiting for the results. I am very strict with my diet and do no cheating. Does refractory celiac disease sound like a real possibility? 
I was just wondering if anyone else has experienced these symptoms and if they have figured out what it is? I am becoming so frustrated because none of the doctors seem to know why I feel this awful.  Could this be related to Celiac? I would appreciate any feedback! 



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Posted 26 March 2013 - 03:14 PM

A stab in the dark: you may have developed an intolerance to nightshades (potatoes, tomatoes, peppers and eggplant). I say this because most folks here who are intolerant to them present with joint pain.

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It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

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Posted 27 March 2013 - 07:02 AM

Or, you have become more sensitive to gluten...you are now out of that teenage honeymoon period when it tends to go dormant.

You may have to readjust your food to stricter guidelines (some people must drop processed foods or foods that aren't tested, etc.).

You also may have gotten a bad glutening and are taking a long time to heal.

Some people develop other intolerances, like nightshades as bartfull said.

You may have another AI disease brewing, and it hasn't shown up on tests. Several AI diseases are connected with joint pain. Of course, a Rheumy would look for arthritis, lupus, etc. but did she check thyroid?

I think it's good you are getting scoped, it may help answer some questions. Did your doc rerun celiac blood tests to see if antibodies are elevated?

I'd get copies of all labs and go down the list for AI diseases and ensure you were checked for all of them.
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!




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Posted 27 March 2013 - 07:41 AM

Prickleypear and Bartfull said everything I was going to add. :)


I would wait on your test and see what it says, then look into other food intolerances and thyroid testing.


When you do get your lab results, request hard copies so you can do some of your own research on those results. I did not do that back in my early 20's when I started getting fatigue and arthritic like joint pain. My doctor ran a few tests and told me all was normal but I might get arthritis one day; when I went back through my records 15 years later, I found my TSH (thryroid stimulating hormone) was slightly elevated at a 6 something (now considered quite high) and I had a positive ANA that she didn't feel the need to mention. Hypothyroidism can cause pain and I could have been treated (and felt good) during my youth rather than my middle age... Get all lab results, and try to get the results they have previously run on you because it could give you a better idea of what is up.


Best wishes. i hope you feel better soon.

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Posted 27 March 2013 - 08:08 AM

What they all said!  Especially get your thyroid checked as joint pain and fatigue are huge with thyroid disease.  I am surprised (not that I should be) that any doctor would jump to the conclusion that you might have refractory sprue because of joint pain.  Unless you are losing a lot of weight and are not absorbing again, refractory would be the last thing I would think.  Return of some symptoms is so common and usually means other AI diseases brewing or another intolerance has cropped up.  Don't panic...you'll get this figured out. We're here to help!

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Posted 27 March 2013 - 09:07 AM

Ask yourself "what is different?" about this year vs. last year, re: everything that is going into your mouth, including otc and Rx medications.  Strongest possibilities are cross contamination, additional food reactions such as to oats, soy, and thyroid issues, or a combination of all three. 


Don't despair, it's possible to figure this out. 

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Posted 28 March 2013 - 05:10 AM

Thanks so much for all of your input! The results came back from my endoscopy and everything looks like it has healed. We have concluded that it is not celiac related and I am going to get tested for other food intolerances. I've had my thyroid checked twice within the last year thinking I had hypothyroidism but it looked fine. If nothing comes up with food intolerances, I'll go back to the rheumatologist! 

Thanks again!

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