My primary symptoms are just dermatitis herpetiformis and nerve pain. It feels like nobody talks about the neuropathy aspect, even though about 10% of Celiac patients experience it. I started getting the rash back in high school and the nerve issues at 41, but I wasn’t officially diagnosed until 52. No doctor ever connected the dots; it was pure luck I found out. A Functional Medicine doctor ordered extensive labs while looking into what turned out to be MECFS. Even after the positive blood test and an endoscopy, the gastroenterologist didn’t link my neuropathy to Celiac. It’s really debilitating and gets much worse whenever I’m sick. Does this sound familiar to anyone?
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I dealt with neuropathy in my foot, but it cleared up once I eliminated gluten from my diet.
I’m about two months into my diagnosis and the neuropathy has improved significantly. I only get occasional tingles now. It used to happen every day and really took a toll on my mental health. I’m hopeful it keeps getting better and that the anxiety it caused eventually fades away too.
I experienced some neuropathy because of a vitamin B12 deficiency. I started taking Nervala to help with the nerve health and it’s been a good addition to my routine.
I have neuropathy that appeared after my other Celiac symptoms, though my doctors say they can’t prove the connection for sure. It definitely intensifies whenever my other autoimmune issues flare up.
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Definitely. It mostly subsided after I cut out gluten, and I get the rash too. Both the neuropathy and the rash flare up if I encounter even trace amounts of gluten. Sometimes dehydration or vitamin imbalances trigger it as well.
I lost sensation in my right hand’s pinky and ring fingers for nearly a year, making it impossible to use a fork or toothbrush. Doctors suggested various medications, but once I went gluten-free, my hand function returned in less than a month. Now, tingling or sharp pains in my arms serve as an early warning if I’ve been cross-contaminated.
I also struggle with DH and Celiac-related neuropathy. I had GI issues my whole life but wasn’t diagnosed until 45. Shortly after, I ended up in the ER because the numbness was spreading across my body due to hidden gluten in ‘GF’ foods. A neurologist confirmed it was Celiac neuropathy. After tightening up my diet, most of the numbness vanished, though I still have issues after exposure. It’s hard to find help since many doctors aren’t familiar with it.
Yes, I have both neuropathy and DH. The nerve issues started around high school before my diagnosis. Even after 17 years being gluten-free, it has slowly worsened. Any inflammation or gluten exposure makes it flare up. Unlike others, I never had vitamin deficiencies until my iron dropped recently. I didn’t even know what DH was until my diagnosis; I thought the ‘acne’ on my face and neck was just stubborn skin issues, but it was actually the Celiac rash.
Doctors almost diagnosed my wife with rheumatoid arthritis because of her hand pain. Her hands are still quite sensitive, and she’s concerned about it as she gets older. Pain in her hands is always the first sign of cross-contamination.
My mother has it. I’m hoping that by going gluten-free early, I can avoid it, as she already had symptoms by my age. Her mother had neuropathy too, but we always assumed it was from her diabetes; we’ll never know for certain now.
I was diagnosed with full fibromyalgia and neuropathy symptoms caused by gluten when I was 31. It took years to identify the root cause. Now that I’m strictly avoiding cross-contamination, it’s mostly in remission. I’ve had minor nerve issues since I was a kid, but I just assumed everyone felt pain from light touches or had their limbs fall asleep constantly.
After my mom had surgery to remove part of her small intestine for cancer, she stopped absorbing nutrients and developed severe nerve damage that affected her walking. Doctors didn’t tell her she’d need lifelong vitamin supplements. I think Celiac is similar because of the intestinal damage. She’s on high-dose B12 now, and after a few months, her neuropathy mostly reversed.
I’m 54 and have Celiac, neuropathy, and type 2 diabetes. All of this hit me during perimenopause in my late 40s, with the Celiac diagnosis at 52. It’s quite the burden for us to carry.
I have small fiber neuropathy along with damage to other nerves from hEDS. Even though I tested negative for Celiac, gluten-induced inflammation definitely makes my nerve pain much worse.