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A Variety Of Symptoms. Can Anyone Relate?


RNEN80

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RNEN80 Newbie

Hi everyone. I am new to the community and to going gluten free. I have not been diagnosed, but as a nurse, I find the weird symptoms over the years leading me to my own diagnoses. Symptoms include fatigue, throat congestion, eye twitching, alternating constipation/diarrhea, cluster headaches ( behind one eye), bloating, gas, nausea, joint and muscle pain and adult acne, easy bruising and panic attack and anxiety. I feel like I am going insane somedays when the anxiety and digestion gets too bad. I have had these for years, and some are getting worse. I went gluten free about 3 days ago and have already felt a difference digestion wise. Any feedback about your experience would be great. I feel so lost. Thank you.


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tom Contributor

Hi RNEN80,

Believe me, MANY here can relate to those symptoms!

...I feel so lost.

...

I bet there are loads of threads on this forum that can make you feel less lost in a hurry.

I think you're in the right place.

Good luck :)

~**caselynn**~ Enthusiast

Hi everyone. I am new to the community and to going gluten free. I have not been diagnosed, but as a nurse, I find the weird symptoms over the years leading me to my own diagnoses. Symptoms include fatigue, throat congestion, eye twitching, alternating constipation/diarrhea, cluster headaches ( behind one eye), bloating, gas, nausea, joint and muscle pain and adult acne, easy bruising and panic attack and anxiety. I feel like I am going insane somedays when the anxiety and digestion gets too bad. I have had these for years, and some are getting worse. I went gluten free about 3 days ago and have already felt a difference digestion wise. Any feedback about your experience would be great. I feel so lost. Thank you.

Welcome!! I can relate to a lot of those symptoms, and to the medical worker aspect as well. I am a CT tech and found myself, the same as you, noticing the odd sequence of events. I'm very thankful for my GI doc who knew just what to do with me! I was a mess, lost is a good way to describe it. I wasn't sure of where to start, or how for that matter, luckily I came across this site. There's lots of great threads to check out and people to bounce questions off. I've been diagnosed and gluten-free for over a year now, and I feel so much better, it's awesome! Good luck to you!! :)

RNEN80 Newbie

Thank you for your reply's! I have done a little researching on others symptoms and find myself relating to almost 95% of them. I always thought it was just because as someone in health care, you are more in tuned to symptoms and could have been overreacting. However, I don' t think I am. Too many weird symptoms; too long; too similar to celiacs. I am looking into the blood tests and or biopsy if necessary. In the mean time, going to stick to gluten free. Thank you again. I feel less lost.

bdw062590 Newbie

Our symptoms sound the same! You are not alone!

beachbirdie Contributor

Thank you for your reply's! I have done a little researching on others symptoms and find myself relating to almost 95% of them. I always thought it was just because as someone in health care, you are more in tuned to symptoms and could have been overreacting. However, I don' t think I am. Too many weird symptoms; too long; too similar to celiacs. I am looking into the blood tests and or biopsy if necessary. In the mean time, going to stick to gluten free. Thank you again. I feel less lost.

If you are planning to seek testing, you must be eating gluten. Even a short time (a couple of weeks) gluten free can skew your blood tests. It's already too easy to get false negatives, you don't want to sabotage yourself! :)

Of course, the gluten-free trial can tell you a lot too. You may find you don't want to do testing if the diet has awesome results for you.

Welcome to the forum!

Lumi Newbie

Hey just started a post that sounds the exact same, I feel lost too, just looking for some guidance, starting my diet today, hopefully we both start feeling better :D


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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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