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Shooting pains in joints/fatigue


mandyinsd

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mandyinsd Rookie

Hello 
As some of you may have read in my previous post, I was recently diagnosed with celiacs on Monday after the results of the stomach biopsy came back. I started going gluten free on Tuesday. Starting on Friday and then extremely worse last night I began getting shooting pains in my joints, arms and legs. To the point it would jolt me out of sleep. Then today I was extremely achy all over, light headed and had joint pain. Now tonight I fell asleep and again woken up with shooting  pains in my joints and my hands and feet are tingling. I also have random sharp pains directly above my belly button and extreme fatigue.  Has anyone experienced this?  I plan to call my doctor in the morning but I can't sleep from the pain. So I'm searching for answers. 
Thank you in advance.


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Ennis-TX Grand Master

Ok first I am going to say I had major tingling, and pains that sometimes felt like fire and needles in joints, arms, back, legs, hand and feet moved around in waves. Strenuous activity, heat, or sunlight seemed to make it worse.  We learned for me a major part of this was Magnesium deficiency, I would suggest a magnesium glycinate in a chealted form from a supplement (Doctors best brand in powdered form in a drink or pill) on this twice daily. You can try a magnesium Citrate if you want but these are harsher on the stomach. Now for immediate relief try taking a hot Epsom salt soak in a bath, this will help a lot.  I might also suggest talking to a dietician or doctor to confirm as you might have other issues also that need to be addressed like B vitamins, Iron, D and E.

Took a few weeks for my body to regulate it and it seemed to spike back up for my first few months gluten-free when I got glutened by accident. 

Ariel90 Rookie

Yup me too all day cramps and pain all over in my back and legs I know exactly what you mean. It keeps me up most night can only get like a few hours of sleep docs don't know whats wrong.

 

Maybe you'll get some help? Good luck

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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.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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