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I need to make a post because I am starting to really trust my gut. (*IT is a SUPER LONG POST). I am very curious if anyone else in this world has experienced or is experiencing something similar to this. I don't know where to go where anyone will believe me. I have had 3 separate passing out/ still conscious incidents where I end up having muscle convulsions. The first one happened New Year's Day 2017, I wasn't eating gluten free at this time. I keep being told I am negative for celiac disease. I was drinking and eating a s$#& ton of gluten. I went to the bathroom and my heart was beating too fast. I felt like I was dizzy, lightheaded, and I was going to faint. I eventually had convulsions on the toilet. Then they stopped I was able to wash my hands then go to the couch. My head dropped losing muscle tone in my body and falling to the floor. On the floor I had were 20-30 different muscle contractions/convulsions. I kept crying and I couldn't talk when they were happening. Eventually, they stopped. April 2017 I had another one in the waiting area of a new GI doctors waiting area. I had just started a high blood pressure medication. I went to pee before my appointment. I sat down. I started sweating on my palms, getting really hot, my heart palpitating, and I got really dizzy again. I told the nurse I am going to faint. My head dropped, and lose muscle tone before convulsing. Of course, my blood pressure dropped too low but was also not gluten free at this point. I was 100% alert and hearing everyone freaking out. I want everyone to understand from August 2017 until end-January 2018 I was on a gluten-free diet. The reason I got off of it at the end of January was for a food sensitivity/allergy test in February. My GI doctor said celiac disease was negative (again) but it seemed that a gluten-free diet would be best. The third time was February 18, 2018. I was at a wedding. I was drinking (and when I was on a gluten-free diet, of course, I made sure what I was eating, and drinking was gluten-free). I am drinking, and I have no care if it's made with gluten. I was eating food too. I sat down for the dinner and the hot sweaty feeling happened, my heart is racing, I feel sick. I feel worried. I know I am going to faint. In the women's bathroom, on this fancy couch with my fiancé. She and I are sitting there and my head drops… I lose all muscle tone. And I have multiple muscle convulsions on the ground… until the ambulance came. I have been to two neurologists who refuse to believe me that the ONE thing these 3 incidents have in common is the fact I was not eating gluten-free. They said to stop drinking.. but I was in Mexico for 1-week January 6th to 13th. Drinking every day and eating gluten-free with no incident like this. They refuse to take a head scan or believe this can be caused by gluten. The people who see it believe they are seizures, but I am 100% alert. It cannot be a seizure. Doctors think it can be trauma, anxiety, convulsion disorder or some other mental illness. I need to know I am not crazy and I know I am not. I believe it is gluten related. My body is telling me it is. Also, I have passed out other times in my life without convulsions that I alreadys related to some kind of food but I didn't know which kind. Thank you for reading.
Hi My daughter was diagnosed in December with Coeliacs Disease. Prior to this,(June - October 2012) her symptoms were severe abdo pain, Bloody, mucoussy loose stools, 28 lb weight loss. Persistent vomiting. Initially they thought Crohn's disease, so put her on steroids, which did calm down all symptoms. She had CT Scan, which showed some thickening of proximal duodenum. Barium Meal didn't go passed her stomach, and she vomited it back up. Colonoscopy showed inflammation. All scopes since have been clear. All bloods good, except B12, she needed to have B12 jabs to get this to a normal level. Coeliac Diagnosis completely threw us. She went completely Gluten Free in December and has remained entirely Gluten Free. Her Blood results were negative for Coeliacs but her biopsies showed 'characteristics of Coeliac Disease'. Her symptoms have not eased at all in fact she has got much worse, but now is severely constipated. Since last October she has been hospitalised 10 times, the last time was last weekend, She needed to have colonoscopy preps to clear her out and strong pain relief. She has also started over the last couple of months to faint. She has gained back about 14lbs since May this year, the vomiting has calmed down, she was vomiting upto 12 times a day, now only 2-3 times. At one point she couldn't even tolerate fluids, which is why so many hospitalisations. It has been a very tough year. I was wondering if anyone else had had a similar experience and if they have any ideas as to what else may be going on? Her diagnosis now is Coeliac Disease and IBS. She has a new medication to help with the constipation - Prucalopride, she also takes Metoclopramide and Mebeverine three times daily with Tramadol and Oramorph for pain. Her pain is there all the time, left lower abdomen, but can be severe and I think disabling at times every day. I am sorry this is so long. Thank you for reading Niks
When I was an infant the Doctor told my parents I was a "seizure baby" and I probably won't live more than a couple years. When I was still a small child they decided it was inner ear trouble and put tubes in my ears. I honestly can't tell you how old I was when those seizures stopped but I do know I had gotten to the point I could tell when one was coming and they didn't scare me anymore. I was old enough to be in Sunday school I know this because the Sunday school teacher didn't think my seizures were real she thought they were an act to get attention. There was an ugly incident where this teacher drug me out of her class room while I was seizuring, yelling at me the whole time that I was a spoiled little brat etc (Which might be why I never expect an authority figure to believe a word I say). The seizures of this type ended about on par for it to have been inner ear trouble. However when I hit puberty I started fainting on occasions this continued into my early 20's. Then it just stopped. In my late 20's I noticed I occasionally had eye twitching not often but I was scared by it. In reading about Celiacs and Seizures I read something about a really mild seizure looking like eye twitching? Then there is the thing that started in 2003. I started losing a tiny bit of time. I'd be standing at work or in the grocery store and no one would be near me then suddenly several people would be there. It was really scary. Like something out of sci-fi. Then I think it was 2008 when I started having moments when I just dropped to the ground and afterward I was horribly dizzy and my reflexes were shot. And about the same time period I also had three episodes where it was like all the data in my brain just went offline for a flash then it popped back in. The first thing I got back was the concept solid if that tells you how much my brain was freaked out. Do these events sound like seizures? I haven't had any of these things happen since going gluten-free in November 2010. I had actually feared the last one I described might have been a mini stroke but now I'm wondering if it was a seizure instead.