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Starting To Wonder If Gluten Is Even My Problem

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Posted 22 August 2013 - 06:29 PM

To recap my biopsy and blood tests were negative but because I was hospitalized due to asthma and on a lot of prednisone prior to my endoscopy my GI doctor said its possible I can still have celiac and the prednisone interfered with the results.

Anyway as most of you know I've been gluten free since July 2nd. I felt great my first month but now I'm having a whole new set of symptoms.

For the last week my joints hurt to the point I can't sleep at night. My fingers are tingly and the veins in my arms are like popping out. Don't know how to describe it you can feel them and they hurt to the touch.

What the heck could be causing this?
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Lori age 40


GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene

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Posted 22 August 2013 - 06:54 PM

A bump or twist in your gluten intolerance healing?  Have you been checked for vitamin deficiencies?  I have had many twists and bumps.  I have doubted I have celiac.  However, my caregivers believe I do, and have pointed to my improvements as proof.  The improvements haven't always been study and I have also changed or added to my treatment several times.  keep walking on the road, find out what you can to keep yourself motivated.


Did you say how long you have had symptoms of gluten intolerance?


Get Well,



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Posted 22 August 2013 - 07:37 PM

Hang in there. There is definitely a lot of crazy stuff  that can pop up after going gluten free. You could always check into casein, nightshades, amines, salicylates...any number of things that pop up and become unmasked once gluten is taken out of the equation. And, it could be possible it's not gluten I guess but I wouldn't risk re-adding it at this point. Experiment a bit?

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Posted 23 August 2013 - 05:28 AM

Just a thought - maybe it has nothing to do with gluten?  Maybe you should see a doctor?


I know this is a radical idea for a Celiac website but - Not everything is about gluten or even a food intolerance.

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#5 dilettantesteph


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Posted 23 August 2013 - 05:39 AM

I agree that seeing a doctor sounds like a good idea.  Unfortunately you need to see a GOOD doctor.  Many of us have had problems with bad ones.  Good luck with that.  I have had similar questions many times.  There was such a huge change when I first went gluten free that I had enough evidence to continue on with the extreme elimination of gluten contamination that I had to undertake to completely eliminate symptoms for myself and my son.  It defied credibility lots of times, but it is what works.  We also have several doctors working with us and some of them actually know their stuff, and lots of test results, which also helps.


I hope that you get things figured out.

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Posted 23 August 2013 - 07:11 AM


From my third to sixth month gluten-free, I felt my worst. I would get periodic (autoimmune) arthralic attacks with a lot of fatigue and hair loss in the past to the point that I was looking into lupus. I saw a rheumy at that time and she was positive that it was all caused by lingering celiac/gluten intolerance issues.  I am hoping she is right because I have been almost pain-free for months now.


It may need more time. Those symptoms can really hang on a loooooong time. Unfortunately.  :( In the mean time, you might as well look into other causes; as we all know, it's not always a gluten intolerance thing.


Best wishes.

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Posted 23 August 2013 - 10:38 AM

Just a thought - maybe it has nothing to do with gluten?  Maybe you should see a doctor?


I know this is a radical idea for a Celiac website but - Not everything is about gluten or even a food intolerance.

Yup, Kareng........pretty radical, I agree.   ;)   There may be another AI problem brewing and it may have zero to do with gluten.  Rheumatoid arthritis and thyroid disease will give a person painful joints.  These 2 diseases are common with Celiac.  Even without these 2 issues, you need to be gluten-free for a quite a while before symptoms subside.  I did not get rid of my last symptom, bone pain, until 3 years post gluten-free and I was super strict with my diet as I am very, very sensitive.


You can see a doctor and be tested for other AI issues but if you are on prednisone, your testing will most likely be negative.

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Posted 23 August 2013 - 05:12 PM

I agree about going to a doctor.  Are you on any medications?  Some medicines have side effects and they can start at any time.  I have questioned my gluten issues-but every time I tried to reintroduce it, it ended badly!  For a long time I thought every pain and symptom was because of what I ate..  I was put on an anxiety medication at the time, becuase I was at the dr all the time with "problems."  I took the medicine for about a year and I have to say it really helped.  I don't doubt that all the problems I was having weren't real, I think I was just so obsessed with paying attention to my body that I didn't know what was normal anymore.  I was taken off the medicine about 2 years ago and I am doing great.  I am not on any medicines right now, I am gluten free, and working on healthier eating and less chemicals in general...  Good Luck, just don't refuse to think it could be something else

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Posted 24 August 2013 - 08:04 AM

I was going to also say that maybe it isn't the gluten that is causing this issue.

A lot of medications will say in their little fine print warnings that you can have reactions to them up to 12 months later. Maybe this is a reaction to the prednisone? Or it could be a million other things besides Celiac. The joys of this disease, figuring out which reactions are related to what!


Hope you can get it all figured out. Stay strong and just keep wading through until you get to the other side, where you feel better and know what all your reactions are.

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