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Symptoms After Going Gluten Free For Months To Years?
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- Scott Adams replied to JoJo0611's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease1Just diagnosed today
First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation... -
- Scott Adams replied to GlorietaKaro's topic in Super Sensitive People1
Am I nuts?
Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune... -
- Scott Adams replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease28
My journey is it gluten or fiber?
Some members here take GliadinX (a sponsor here) if they eat out in restaurants or outside their homes. It has been shown in numerous studies to break down small amounts of gluten in the stomach, before it reaches your intestines. This would be for small amounts of cross-contamination, and it would not allow any celiac to eat gluten again. -
- Russ H replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease6Thoughts? Non-endoscopic Celiac diagnosis in two year old
The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much... -
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By Scott Adams · Posted
First, please know that receiving two diagnoses at once, especially one you've never heard of, is undoubtedly overwhelming. You are not alone in this. Your understanding is correct: both celiac disease and Mesenteric Panniculitis (MP) are considered to have autoimmune components. While having both is not extremely common, they can co-occur, as chronic inflammation from one autoimmune condition can sometimes be linked to or trigger other inflammatory responses in the body. MP, which involves inflammation of the fat tissue in the mesentery (the membrane that holds your intestines in place), is often discovered incidentally on scans, exactly as in your case. The fact that your medical team is already planning follow-up with a DEXA scan (to check bone density, common after a celiac diagnosis) and a repeat CT is a very proactive and prudent approach to monitoring your health. Many find that adhering strictly to the gluten-free diet for celiac disease helps manage overall inflammation, which may positively impact MP over time. It's completely normal to feel uncertain right now. Your next steps are to take this one day at a time, focus on the gluten-free diet as your primary treatment for celiac, and use your upcoming appointments to ask all your questions about MP and what the monitoring plan entails. This dual diagnosis is a lot to process, but it is also the starting point for a managed path forward to better health. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.): -
By Scott Adams · Posted
Your experience is absolutely valid, and you are not "nuts" or a "complete weirdo." What you are describing aligns with severe neurological manifestations of gluten sensitivity, which is a recognized, though less common, presentation. Conditions like gluten ataxia and peripheral neuropathy are documented in medical literature, where gluten triggers an autoimmune response that attacks the nervous system, leading to symptoms precisely like yours—loss of coordination, muscle weakness, fasciculations, and even numbness. The reaction you had from inhaling flour is a powerful testament to your extreme sensitivity. While celiac disease is commonly tested, non-celiac gluten sensitivity with neurological involvement is harder to diagnose, especially since many standard tests require ongoing gluten consumption, which you rightly fear could be dangerous. Seeking out a neurologist or gastroenterologist familiar with gluten-related disorders, or consulting a specialist at a major celiac research center, could provide more validation and possibly explore diagnostic options like specific antibody tests (e.g., anti-gliadin or transglutaminase 6 antibodies) that don't always require a gluten challenge. You are not alone; many individuals with severe reactivity navigate a world of invisible illness where their strict avoidance is a medical necessity, not a choice. Trust your body's signals—it has given you the most important diagnosis already. -
By Scott Adams · Posted
Some members here take GliadinX (a sponsor here) if they eat out in restaurants or outside their homes. It has been shown in numerous studies to break down small amounts of gluten in the stomach, before it reaches your intestines. This would be for small amounts of cross-contamination, and it would not allow any celiac to eat gluten again. -
The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much more quickly than adults. I would look at testing all 1st degree relatives - parents, siblings.
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By GlorietaKaro · Posted
Hiya- I have been eating gluten free for several years now— but the learning curve has been steep! I got serious about the strictness of my diet at the beginning of the COVID pandemic: I missed baking bread and thought there would be no harm in making bread in a bread machine— I was just assembling the ingredients, not actually touching it. Well, some flour puffed up in my face and I lost my voice! At that time, I had many other scary things going on: muscle fasciculations, dropping things, missing things I was reaching for, tripping and trouble navigating around corners and doors ( I ran into them!), muscle weakness resulting in severe incontinence, issues with irregular heartbeat, and other things. I thought I had ALS. I have since learned to avoid all traces of gluten and oats and everything has resolved, but even a trace amount of gluten will cause me to start tripping, dropping things, and have muscle spasms. The last series of micro-exposures resulted in half my face going numb, like Bell’s Palsey I have consulted with several doctors about this, and mostly they look at me like I’m mentally ill and treat me like a hypochondriac. One doctor suggested that I start eating gluten again so I could get a diagnosis, but that is a scary prospect— I do like to be able to breathe! I feel like a test run with gluten could put me in the hospital, or even kill me. So my question is— am I crazy? Could all of those symptoms be caused by gluten? Is there any way to get a definitive diagnosis without eating gluten(like a scratch test or something?)? Also, in a city full of gluten avoidant individuals (who look a lot like me) but who still occasionally eat gluten foods or cook with gluten or who can still walk into a bakery or pizza restaurant, how can I get taken seriously? Mostly I just want to find out if I am a complete weirdo, or if there is anyone else out there who reacts like I do—
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