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Muscle aches & pain


ShannonA

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ShannonA Contributor
 

Hi,  I am trying to locate an article that was written giving the physiological breakdown of what gluten does to the muscle in some people.  It goes into the exact effect that gluten has on some peoples muscles rather than gut, leading to muscle pain/weakness. Thank you so much....I went through this now my 11 year old is going through it. The article is in such detail & im trying to explain it to my son.

 

 

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flowerqueen Community Regular

I asked a similar question years ago when I was first diagnosed with coeliac disease. I was unable to find anything though. All I do know is I was very ill, my symptoms had been diagnosed many years ago as IBS. It was decades later when I was walking with a stick because I was so weak I could barely walk. My muscles were weak even when sitting or lying down I felt shakey on the inside. (Like a bag of jello).  I had blood work which found extremely low ferritin levels and general malnutrition. It was then that I underwent biopsies etc. It was a long drawn out process as I had already suspected coeliacs and had given up gluten (not realising that you need to be eating it to get a diagnosis - I'm older and wiser now. 

I hope someone else on here can give you the information you need.

  • 2 weeks later...
ShannonA Contributor

Thank you! I went gluten free for a year only tolerating soup & came back to life so to speak.  Burning in my head persisted until occupital neuralgia was diagnosed. I had an implant in my right head but burning continued, so I ate pizza all summer while sulking. I'm getting the other side of my head implanted with a stimulator & now am having all the muscle aches/pain due to eating wheat all summer. I've learned not to eat wheat when down & out bc it's not worth this. Yes I feel the jello feeling especially in the afternoon.  I'll look into more supplements!

Blessings

Shannon

flowerqueen Community Regular

Most definitely keep off the wheat/gluten, it's so not worth it. Good luck with the other implant. It will take a few months before the supplements start to work, so don't feel despondent if it doesn't help right away.

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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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