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Found 8 results

  1. Hello... New to the board, first post :). Glad I found you... History.... I had been suffering with loose soft frequent stools and gas/bloating and lethargy for a while... About 15 months ago I brought it up to my PCP, and she suggested running a test for celiac. It came back negative. Iron levels were a bit low so started on a supplement. The last year the above symptoms have worsened.. OBGYN attributed it to hormonal changes (im 46). Two months ago I went back to see my PCP again (her nurse this time) for an annual physical and blood work. Talked to her about my symptoms again... So we ran a full panel blood work (no celiac test). Results came back with dangerously low iron, low vitamin D. Based on my symptoms she immediately thought there was something blocking the absorption of iron in my body and brought up gluten. We didn't test this time but rather, she wanted me to completely give up gluten for 3 to 4 weeks, double up on iron supplements and see how I felt after a month. I should add that I'm also vegan so consume plenty of greens along with iron supplements so I should not be deficient in iron. It's now been 8 weeks gluten free (with the possible screw up, as im still learning what to avoid)... And while my bowel issues have gotten 90% better (solid stools, far less flatulence), I'm Still extremely fatigued. I can get 8 full hours of sleep, yet feel I still cannot function with such low energy levels. I have to nap every day. I was getting dizzy spells during my workouts. I feel after 8 weeks gluten-free my iron levels should have improved but I still feel Lethargic as all hell and I just want my life back. Doc says it could take 6 months for iron levels to restore. Is this the case with any of you? I should add that I'm a very active mom of two. I workout every day and am in very good physical condition, I eat very well.. So this should all be supplying my body with a lot of energy. I feel at a loss... I want my life back. Any words of wisdom?
  2. 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.
  3. Hey everyone!! Dealt with morning anxiety, complete lack of appetite in the AM/diarrhea if I tried to eat, fatigue, etc. for about two months. Saw doctor and they first prescribed me antidepressants while they ran bloodwork. Got bloodwork yesterday, positive result for celiac, going to get the endoscopy/biopsy soon. Anyone else have morning anxiety like CRAZY before cutting out gluten? Afraid to leave the house because of feeling faint, dizzy, etc., like I'm going to pass out. I haven't actually passed out, but the feelings are all there. It's hard to overcome the anxiety some time! Hoping someone else has had similar symptoms and that I can look forward to this being over soon!! Thanks everyone xoxo
  4. Hi, Has anyone experienced irreversible damage to brain caused by a gluten challenge to diagnose gluten ataxia? It is possible to have all the symptoms but no damage to your brain?
  5. all of my life I have suffered from migraines. Even as far back as a toddler. At age 15 I was falling alseep in class due to how tired I was and Bc my headaches were hurting me so bad. I recall every evening coming home, excited to lay in a dark room Bc there was never a day my head wasn't absolutely busting. At age 18 they began lasting 5 days and felt like my brain was on fire. At age 20 I began complaining of feeling like I was running a fever constantly, as well as still suffering from the migraines. At 21 my doctor prescribed a seizure medication that supposedly helps migraines. I was hesitant Bc I don't have seizures... So I waited months to try it, but finally caved out of desperation.It didn't help, it just made me stupid Bc I was unable to think clearly. At age 22 I was missing months of my life, laying in the dark, sweating, tossing and turning all with an ice pack on my head, since the headaches still felt like my brain was on fire. I would tell my doctor about this and I was told it was depression. I would say "I would not be depressed if my life wasn't like this." He still insisted it was my thoughts doing this to me. He later prescribed anti depressants. Nothing changed. I missed that entire year of my life. Totally debilitated by these headaches.. Except now they consisted of the room spinning. A nauseous feeling that felt like the worst food poisoning as well as cold sweats. I remember the night I prayed "God just show me what it is. I'm tired of praying to be healed just show me what it is." as fate would have it, I went gluten free on accident that next month. I remember unloading my groceries and realizing everything I had bought was gluten free and laughing about it. I had no idea what gluten even was ! Lol. So that was definitely an answered prayer ! 3 weeks of being unintentionally gluten-free I recall discussing w my mom that my headaches had pretty much subsided, and telling that I wondered if it had anything to do w the fact that I had quit drinking pop. Shortly after that, I ate something that contained gluten. I couldn't even finish it. I felt odd. My heart was beating fast and I felt that inner fever begin to simmer again. And the old headache I had once lived so long with, came back with a vengeance. I some how fell asleep, Still clueless that this was caused by gluten. the when I woke up, i was greeted with a feeling that felt like the worlds worst stomach virus along with food poisoning. When I say I puked... It feels like an understatement lol. I puked until I puked a bile/infection-like looking substance which smelled like infection too!! (Gross I know but, I have to be truthful) This attack lasted for around 25 hours or more. After wards it was like I had fought a war. then as I was laying there...it was like a light bulb hit me... "Gluten ! I ate gluten! what even is gluten ? " so I googled gluten allergy. And I was amazed !! I went gluten free immediately and sense,the Terrible migraine/puking episodes have disappeared ! Unfortunately I didn't know you had to be tested for celiac while you we're eating gluten, so I've never been able to be tested for it. Therefore I only claim to have the allergy. However I suspect it's celiac Bc so much more happens to me than just fatigue and brain fog. I nearly die. I am not exaggerating. I'm someone with a high pain tolerance. I've broke my back and walked home ! lol. But these attacks literally have me begging for mercy!!! I have been gluten-free for 5 months now. This week I was glutened twice ! so as you can imagine I'm a mess. The first time was from a little bit of gluten containing alcohol (Smirnoff was falsely advertised as gluten-free. Don't ever make that mistake of believing their website!!) you guys, I literally couldn't take care of myself. And This was 15 hours after drinking so it wasn't due to being drunk. Once again, I puked till I had nothing else to puke except for green/yellow infection. I puked almost half a small bucket full of that stuff alone! :/ My mom had to come take care of me and I am 23. I couldn't even go get myself a cold rag due to how dizzy I was. It truly feels like the room is spinning! The second time i was glutened, was two days after that. I assumed that all Soda was gluten free, by mistake .(I rarely drink soda, so I shouldn't have assumed that, but needless to say, I paid for it.) I took maybe 3 sips of mr. Pibb and felt that fire headache spread across my head. I immediately googled and found out its one of the sodas that aren't gluten-free. Just my luck lol. I didn't puke bile that time Bc I'm assuming I didnt consume enough for it to be that bad, thank God. But now my stomach doesn't want to hold food. I feel sooo worn out and every time I eat I nearly fall asleep. I did a liquid diet for a few days to let my gut heal but it's still thrown off. I feel so out of wack and emotional !! I've only been glutened 4 times in 5 months but the last two was this passed week. I've never been contaminated so close together but I'm telling you guys, I don't know what I'm going to do. I so badly want to be diagnosed with celiac so then Atleast I'm taken seriously by my doctor . But as of right now I just sound like a hypochondriac :/ thankfully my family finally believes me. But it still bothers me not to know for sure. I'm sorry if I bored you guys but I guess I just needed to vent lol. I was also wondering, do u all think I have Celiac or am I just gluten sensitive?? can gluten sensitivity be that intense? Thank you for taking the time to read about my story. I wish you all health and many blessings ❤️❤️❤️Kayla
  6. Has anyone suffered more than 2 months of gluten withdrawal? I was diagnosed 2 months ago and still feel worse than ever, light headed, feeling dizzy, feeling weak and not being able to concentrate like I used to. Although my stomach cramps and small intestine pain has gone I am wondering if I'd rather have them back compared to feeling so dizzy all the time. I don't feel sick when I eat gluten it just caused pain in my small intestine. I had a liver scan, an mri scan all because I did not know I was a celiac and that was over a 4yr period, started when I was 44! I have been eating bread all my life most days which would not of helped although I recently read that I should not of gone cold turkey when coming off gluten I should of weaned off gluten gradually, or so this top Celiac expert says. This is why I have had such a bad reaction in coming off gluten...but is this true? I am wondering why I feel so bad after 2 months of being gluten free and why I feel so dizzy and light headed?
  7. I am working on going gluten-free. I have no formal diagnosis yet (I may not even pursue it) but I had no major issues today but around noon I had a cup of coffee (which I have every morning) but this time mom added Watkins Original Double Strength Vanilla Extract to our Half & Half for our coffee. We've done that before, but I've been now 2 full days (attempting to be completely gluten-free) without gluten. I was glutened (I think) yesterday at lunchtime when I made gritz from a brand new, unopened can. They were not certified gluten-free and do not say gluten-free on the label. So it was my fault. Diarrhea, nausea, heart burn from the grits. But today not long after drinking my coffee (I am not a sipper, I drink it like I do water) I got up from laying down and noticed I was very dizzy and my head feels very airy, like my skull is inflated with helium. I'm hating this! ACK! Could this dizziness and helium-head feelings come from gluten? I've not had this feeling from food before. But then again I've never gone gluten-free before either. There was only a Tablespoon of extract for all three of our coffees, which equates to 1 Tsp per coffee, which really isn't a whole lot considering the alcohol in it. Soo I'm not sure what's going on. I've eaten a protein shake for breakfast which was gluten-free. scrambled eggs for lunch and then a chicken breast for snack (leftovers) then had coffee with the cream and vanilla extract in it. This head thing only happened after the coffee. My stevia is gluten-free that I use only in coffee. Our coffee has not changed, nor cream, nor vanilla, nor stevia. I don't seem to have any really significant intestinal or stomach problems right now. I am still getting sharp stabbing (though light feeling) pains in my intestines since after the chicken today. I put Sargento shredded cheddar cheese on it. I know I am having issues with cheese right now but never had that cause this weird head feeling and dizziness. Any thoughts?
  8. 4 months ago I was diagnosed with Celiac disease and have slowly been getting better. I just have one question about something that has happened to me about 4 times now and it happened again yesterday. I start out with stomach pain and gas, then my vision gets kind of blurry (hard to focus on one thing especially on the computer screen), my eyes get watery especially my left one, then I get light headed and feel like I am going to black out, then I start shivering uncontrollably for about an hour, and then it pretty much goes away. The last two times this has happened I realized that I had eaten ice cream the day before and I am allergic to milk. I have been on a stick gluten free diet for the last 4 months. My only doubt is that I live in Guatemala and recently ate steak which has MSG in it. I am not sure if the MSG here has gluten in it or not. Anyways, does anyone have any ideas about what could be wrong. My thyroid was tested and it is normal. The test I had done were for T3 - 1, T4 - 7.8, and TSH - 2.22 which all are normal. Any ideas would be greatly appreciated. Another thing is that my body temperature today is 97.7 and when I start shaking I feel like I am cold and start sweating.