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Legs And Feet Hurt So Bad


LoriC

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LoriC Apprentice

My legs and feet have hurt me since late June..i was diagnosed with DH in late August..everytime i tell my doctors my feet and legs ache me so bad..they said either i'm getting old or eat a banana a day..I'm getting a little tired of hearing the "old" thing, i don't think this is normal, i mean its hard for me to get out of bed in the morning thats how bad they hurt and my veins stick out really bad, no discoloring or swelling. Anyone else have this problem? could it be related to being glutened? Thanks, Lori


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Yellow Rose Explorer

This could be PAD parifarial artery desiese. My spelling is bad sorry. Google it and see if your symptoms match.

Yellow Rose

ravenwoodglass Mentor
My legs and feet have hurt me since late June..i was diagnosed with DH in late August..everytime i tell my doctors my feet and legs ache me so bad..they said either i'm getting old or eat a banana a day..I'm getting a little tired of hearing the "old" thing, i don't think this is normal, i mean its hard for me to get out of bed in the morning thats how bad they hurt and my veins stick out really bad, no discoloring or swelling. Anyone else have this problem? could it be related to being glutened? Thanks, Lori

Yep. For me leg pain and balance issues were along with DH were a primary presenting symptom. The pain was excrutiating at times and I was young so they told my Mom it was growing pains. I also lost my reflexes about this time which remained absent until 40 years later when I had been gluten-free for about 3 years. One of the things that will help until you heal a bit more from the gluten will be sublingual B12. When I get glutened now it is not as painful but it still feels like my legs are made of lead and weigh about 50 lbs apiece. Sometimes a nice hot bath and a couple of baby asprin, I take St. Josephs baby chewables, will help to relieve the discomfort.

Offthegrid Explorer

I have a lot of problems with something like restless leg syndrome, but it affects my arms, too. I have found that alcohol severely aggitates this. Just something else to consider that could possibly help.

nokomis Newbie

I have the same problem as offthegrid. Legs and arms. Not so much restless leg syndrome for me, but really bad muscle fatigue with activity. Seems to get worse as the day goes on and the only thing that seem to make it go away are hot baths and lots of resting (laying down).

It's not B12 or iron deficiency, my thyroid is fine, so ???

Anyone have any experience with Myasthenia Gravis? I read that it can be more common in people with celiac disease.

bakingbarb Enthusiast
I have the same problem as offthegrid. Legs and arms. Not so much restless leg syndrome for me, but really bad muscle fatigue with activity. Seems to get worse as the day goes on and the only thing that seem to make it go away are hot baths and lots of resting (laying down).

It's not B12 or iron deficiency, my thyroid is fine, so ???

Anyone have any experience with Myasthenia Gravis? I read that it can be more common in people with celiac disease.

I too have this bad muscle fatigue. We have stairs, my bedroom and the laundry are in the basement! We also have puppies right now so up and down, up and down etc.

The muscle fatigue drives me nuts, my family just looks at me. Last night I just sat down, I was so done. I used to think I was wonder woman and could do it all, mentally I still like to think that but I know it isn't so.

I am so glad you all posted about this, between feeling like I am starving and the fatigue I thought I was having some other issues. It is great to know what it is, now just waiting for it all to heal.

JodiC Apprentice

I too struggled with this until my internal med dr checked my vitamin D levels (all of them) and my vitamin C level. Both were dangerously low. I was prescribed 50000 units of D3 for 8 weeks. and 2000 of C. Felt much better. Now I know when I start getting the same feeling in my legs and arms to up my vitamin D and C. Especially now that it is winter and its harder to get in the sun. I also had very low thiamin levels (formally known as B1). I took 100mg for 8 weeks and now only have to take 15 to 25 mg a day to keep the levels up. Hope this helps. :)


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      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
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