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Starting To Wonder If Gluten Is Even My Problem
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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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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,

 

D

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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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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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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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(hugs)

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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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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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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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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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Would you review this on Find Me Gluten free?  You can  use the app or just go to it on line. If the restaurant isn't listed, there is a way to suggest it.  I have done that and it works.  Many of us look at that site/ app
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