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Starting To Wonder If Gluten Is Even My Problem
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9 posts in this topic

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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    • Advil (ibuprofen) is gluten-free, but can be a stomach irritant, especially if taken on an empty stomach. That said, I will also place my bet on the garlic and onions. As Raven said, eating more than once a day may also help. An empty stomach is likely to be an irritable stomach.
    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
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      St Johns Wort daily.
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      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
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