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Post Diagnosis, Recovery & Treatment of Celiac Disease
Discussions related to the recovery process after you've been diagnosed.
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Recent Activity
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- MI-Hoosier posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms0Test uncertainty
Hi, I was recently diagnosed with stage 3 NASH and doctor is concerned something is caused my disease to progress quicker than they would expect. During blood tests a celiac screen was pulled as my mom is a celiac. My ttg was a 49.4 (normal >15) but my endomysial antibody was negative. I have never had gluten symptoms and no issues with bread and am... -
- Sunshine4 replied to Sunshine4's topic in Related Issues & Disorders3Neurologic symptoms - Muscle Twitching and Hand Tremors
Many apologies for somehow changing your first name Scott! -
- Sunshine4 replied to Sunshine4's topic in Related Issues & Disorders3
Neurologic symptoms - Muscle Twitching and Hand Tremors
Mark, do you have suggestions as to celiac centers that could be helpful? Oklahoma/Texas neurologists have only offered me the “eat gluten free” advice and then when I ask about the hands or muscle twitching they said they just don’t know. I appreciate your great information on supplements, thank you for your help! Scott, do you have suggestions as to... -
- Scott Adams replied to Sunshine4's topic in Related Issues & Disorders3Neurologic symptoms - Muscle Twitching and Hand Tremors
It sounds like you’ve been through a challenging journey since your celiac diagnosis, especially with the unexpected neurologic symptoms like muscle twitching and hand tremors. While celiac disease is primarily known for gastrointestinal issues, it’s important to recognize that it can also manifest in non-GI ways, including neurological symptoms. Research has...- 1
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- Sunshine4 posted a topic in Related Issues & Disorders3
Neurologic symptoms - Muscle Twitching and Hand Tremors
I was initially diagnosed with celiac in June 2024. I had no G.I. issues but got chest and pelvic pain. I changed my diet – although I was not great at watching cross-contamination – and had no problems until the end of October 2024 when I started getting headaches. At the end of December 2024 the headaches ended but I started having twitching throughout my ...
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By MI-Hoosier · Posted
Hi, I was recently diagnosed with stage 3 NASH and doctor is concerned something is caused my disease to progress quicker than they would expect. During blood tests a celiac screen was pulled as my mom is a celiac. My ttg was a 49.4 (normal >15) but my endomysial antibody was negative. I have never had gluten symptoms and no issues with bread and am 54. Do I need a biopsy to rule celiac in or out with this mixed test? Any thoughts are appreciated. -
Many apologies for somehow changing your first name Scott!
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Mark, do you have suggestions as to celiac centers that could be helpful? Oklahoma/Texas neurologists have only offered me the “eat gluten free” advice and then when I ask about the hands or muscle twitching they said they just don’t know. I appreciate your great information on supplements, thank you for your help! Scott, do you have suggestions as to celiac centers that could be helpful? Oklahoma/Texas neurologists have only offered me the “eat gluten free” advice and then when I ask about the hands or muscle twitching they said they just don’t know. I appreciate your great information on supplements, thank you for your help!
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By Scott Adams · Posted
It sounds like you’ve been through a challenging journey since your celiac diagnosis, especially with the unexpected neurologic symptoms like muscle twitching and hand tremors. While celiac disease is primarily known for gastrointestinal issues, it’s important to recognize that it can also manifest in non-GI ways, including neurological symptoms. Research has shown that celiac disease can sometimes be linked to conditions like gluten ataxia, peripheral neuropathy, or even myoclonus (involuntary muscle twitching), which might explain what you’re experiencing. The fact that your symptoms have fluctuated with dietary changes suggests a possible connection, even if it’s not yet fully understood by your local neurologists. It might be worth seeking out a specialist who has experience with celiac-related neurological issues or consulting with a celiac-focused research center. In the meantime, staying strict with your gluten-free diet is a good step, as even small amounts of gluten can trigger immune responses that may contribute to these symptoms. You’re not alone in this—many with celiac report similar struggles, and connecting with online communities or support groups could provide additional insights and reassurance. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium. Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues. -
I was initially diagnosed with celiac in June 2024. I had no G.I. issues but got chest and pelvic pain. I changed my diet – although I was not great at watching cross-contamination – and had no problems until the end of October 2024 when I started getting headaches. At the end of December 2024 the headaches ended but I started having twitching throughout my body. Not long-term twitching just a fast burst twitch. In addition, I had tremors start in both of my hands. Sometimes it is stronger in one hand than the other and sometimes it seems to die off and then comes back. This has gone on for two months and the twitching has gradually lessened although sometimes it comes back with a vengeance. I have been really strict about my diet and cross contamination so I feel these symptoms are related to my celiac disease although I’m not certain and I’m unsure that the strict diet is what has helped. I’ve been tested for everything - MS, lupus, ALS and a variety of other things which were all negative. I can only relate these symptoms to my celiac but no neurologist in my area seems to know anything about celiac causing anything other than gastric issues. I’m so frustrated and just looking for others that have had similar symptoms and doctors that are more knowledgeable about celiac and neuro issues. Thank you!
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