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Hi there everyone! Since i'm new here i write the story of my celiac diagnose and not diagnose and my recent problems maybe someone can help me out a little or give me a warm thought, since i'm being on the downside once again... (In advance sorry if my English isn't the best..., or it's a long story) My problems started when i went to the university of information technology (around the age 19) here in Europe, Hungary, it gave me lot's of stress but i was doing actually pretty good comparing it to how i was living my life. Basically i was on my PC for the whole night every day and skipped or not skipped classes in the daytime, then sleeping after i did the classes which i couldn't skip... Then after 3 years, we had a 1 week free time, so i went home to my family then on the free week one teacher required us to go into the class on monday. I took the train and went to my apartment and drank some Sweppes (orange flavour) but it was ruined because it was probably sitting in my apartment room for like 2 weeks or so... I just drank some and run to the class. So i was attending this class in the first rows of the room, there were around 30 people at the class listening to the doc. Someone from the backs hit my head with a spring of a pen, like 10 minutes little later i started to feel that my saliva is pumping and pumping and all i wanted to do was to spit it out, but i couldn't just do that in front of the people in the room so i kept swalloving it. It turned into this weird thing that i kept counting the seconds and gulping and it just didn't want to go away, my saliva was just kept producing. When the class ended i was feeling really weird and stressful but i needed to take the 2nd part of the class soon after. So i took some fresh air drink some water and went in, but it was the same thing, i kept counting (watching my watch), count and gulp my saliva... Then after the 2nd part of the class ended i was very stressed and freaked out almost, so the first thing i did was to call my parents than i'm feeling sick, very sick. Somehow i got home with the train and my parents took me home with our car and i was laying on my bead but i was still freaked out because of what happened so i kept spitting my saliva and it still kept producing. So at late night my parents took me to the "doctor on duty" if thats the right words to call it. There were no other doctors around at the time, the doctor told me to do nothing, and check my doctor on the next day. So i went to the internist my mother knows well, and he immediately sent me to a gastroenterologist that theres maybe something in my esophagus. Immediately we took the train went to the gastroenterologist (because there aren't any near me). The gastroenterologist did an endoscopy on me with a biopsy then they took some serum tests on me, then i needed to wait 4 weeks until the tests arrive. The endoscopy diagnosed some kind of redishness in my stomach and near the duodenal. The doctor prescribed me a PPI (Controloc ~ INN-pantoprazole) that i may have a reflux. So i took the pills (at this point i didn't have my saliva problems from before, that went away in 1 day), but even tho i was eating the PPI pills my throat was this very dry feeling with some burn and pain... So after 4 weeks the serum tests arrived and it stated that my "anti-transglutaminase IGA" were positive. The gastroenterologist told me that there is a high chance that i'm a celiac, so i must do a gluten free diet and a nutritionist came and told me what i can eat and what i mustn't. So i was eating the PPI pills and going gluten free, i started to feel better, BUT and there is a big BUT after 2-3 months i started to feel really bad like i had this huge "shortness of breath" and i was kept burping and feeling like i'm drowning. So i keept going to the gastroenterologist who told me there must be a problem in my diet, so he checked my serum lvls after the 3 months and it was all negative. Then he told me i sould see a "nervous and psychiatrist" so i did that, the doctor told me that i don't have any problems like that, i should go back to my gastroenterologist... So when i went back to the gastroenterologist and he told me that he can't help me my mother was kept crying that please help so he ordered me a contrast X-ray examination. So they made me drink some kind of special liquid and then they were X-raying my stomach about reflux, it took a half day to do. Then the results were negative for reflux. Then the gastroenterologist told me i must have chron, and prescribed me "stalofalk - mesalazine", without anymore tests or anything. I never had a diarherra, none at all only constipation, undigested things in my stool and lots of mucus. The pills were so big that i couldn't even eat them. Then i went back the doctor, my mother told him that shouldn't i be tested before prescribing pills for chron? Then the doctor shouted at us and said i need to take an "intestinal mirroring". I went to my internist and asked him about this "stalofalk" pills and what does it do, or what should i do... or can i split them apart or.... Then my internist told me i shouldn't take these pills because if i don't have a chron yet, the pills would make me develop it. My mother was so scared hearing it and i couldn't really take the pills so i decided to stop my cuuring with this gastroenterologist. So i was going to my internist and he tried to prescribe me another pill for an enteritis without any real test but according to the results i had from the gastroenterology. So i took and felt so bad that the doctor told me to stop them, then he told me i should be checked for celiac by serum tests to see whats up with that. So he did a test on me 4 weeks later the results were negative, then he told me to eat gluten again. So i was eating gluten and i didn't feel anything worse than before, i was already having this anxiety which didn't really went away. At this point i tell you that even tho i'm an adult man, i'm very small and i'm very weak, i never really developed any muscles or weight. In my childhood my pediatrician always sent me to serum tests that she thinks that i'm anemic but the tests were always negative. I realised that every time they take my blood for these serum tests 4-5 test tube, i always felt really really week like almost fainting on the spot... And in my younger years at the elementary school and later at the highschool i was so tired all day long that i was yawning all day long no matter what did i do or what time of the day it was. And every time i was yawning because of tiredness i always had huge amounts of tears coming out from my eyes. So i was eating gluten and feelins anxiety and generally bad, my father were helping me to take a shower, or he was sleeping with me, and he was bringing me to the university classes... After 2 months the internist told me to do another serum test for celiac, it turned out to be negative again. Then he told me i don't have a celiac disease the gastroenterologist was bad and i must take antidepressants. I was so scared from those pills and i'm still scared by them even today, i didn't take them and just went on with my life. After some time i grew more and more stronger mentally, coping with this really bad anxiety but i was scared from a lots of things, and i had lots of very bad thoughts because of it. The doctors told me that i'm a little weak piece of sh*t that i don't wanna finish the university and i don't wanna work and live i just want to steal my parents money and so on so on... that i must take huge amounts of antidepressants and ... It felt really bad hearing all that, i was crying in the inside, and after the days and the months slowly passed my mother started to actually believe it that i'm just a faggot and i don't want to finish the university and i'm just acting. So it really generated a generally bad family feeling at home. So my father were taking me to the university classes, i had lots of panic attacks at the classes and even more at the exams. At some point i was so down that i went to a psychiatrist again and he prescribed me "frontin ~ alprazolam", i took these for a year, but they didn't help while the psychiatrist told me to raise and raise and raise and raise the pills more and more and more until i feel good. After a year i told stop it, it doesn't help and in a half year by reducing the doseage i slowly dropped it... Meanwhile the years i have developed this weird sympthom that some of my urine doesn't completely come out of my urethra, i was checked by 5 different urologists and they all told that i have no problems. After 4 more years i passed the "final exam" of the university with the "best possible grade of 5"... My mother kept telling me afterwards that i will feel better that the university stress is now stopped, sadly it wasn't the case. So i was at home living with my parents and i don't work just stay at home and live day by day. After 1.5years after i finished the university, i started to develope this very bad feeling in my stomach and a big constipation, it hurted so badly that i the time is here and i'm going to die. So i took antispasmodic pills on my own suggested by my mother so i can live through this 2 months until i can see the internist (because he was away). So the internist has arrived back i went to him he sent me to a big serum test. After the results came my celiac tests were positive again: "anti-transglutaminase IGG", "anti-transglutaminase IGA", "anti-gliadin IGA", "anti-gliading IGG" the tests doesn't say any values just positive. So my internist told me something like "ohh so it seems like you are really a celiac then?!" i was like ... ... ... So i immediately started the celiac diet again. So slowly but surely i was feeling better my stomach pain went away slowly, then i started to have this huge "shortness of breath" like 5-6 years ago when i first did the diet. So i was looking for allergens and i found out that there is a thing called "lupin" "lupine" inside "schär" flours that i was baking with. I tried to eat a biscuit with a "may contain traces of lupin" sign and i still fellt the "shortness of breath" just like 5-6 years ago the same thing. So from that point i eliminated "lupin" from my diet, i started to feel better and better and my constipation went away but at some point, i started to eat like crazy, later i started to develop this huge sweating after eating. I was joking around i could eat a ******** amount from this tasty food, I ate 2 times more than my father. I started to gain weight and my constipation turned into a thing that i was sitting on the toilet for 5 times a day producing huge amounts of stool (s$#&), which is to this day still contains a huge amount of mucus. Every doctor before told me that i shouldn't care with mucus in my stool. After 6 months has been passed i went on a gliadin serum test again and all 4 values has become negative once again. I went on and paid for a celiac gene test too even tho the internist didn't say i should do it, which turned out to be that: i have a medium chance of having the celiac disease. The test result paper states me a range of brackets [1-6]: 1) Almost no chance: code 0; 2) Minimal chance: code 4, 5; 3) Small chance: code 6; 4) Medium chance: code 2, 3, 9, 10, 12, 13; 5) Medium/high chance: code 1, 7; 6) High chance: code 8, 11, 14. My result is a code 9 so i'm in the 4th bracket which is the "Medium chance bracket". It was a HLA-DQ2 and DQ8 haplotype test with PCR hybridization... After some time i ate some "tuna in olive oil" and some "gluten free potatoe chips" and started to feel very bad again. Like if somebody is spinning a knife in your stomach. Then after a half year passed by i started to develop headaches that just didn't really wanna go away. And i started to really sweat, like from my forehead and my popliteal huge amounts after eating. The internist told me to eat less and do some physical work. So i did that and it fellt better but then again i wasn't realising it i ate the same "rio-mare tuna in olive oil" and the same "gluten free potatoe chips" and "gluten free raw dates bars" i started to develop this huge nausea and bloating. So i went again to my internist and he told me that i should take this pill called "dicetel ~ pinaverium bromide" it hurted my stomach so badly that i was crying for 5 days taking the pill then i stopped it. I was eating only lactose free dairy products by this time because it happened to me 3 times before in the same year that my mother made "vegetable cream soup concentrated (scrambled ~ idk the right words for it) with milk" and after i ate the soup while i was eating the main dish i was s$#&ting in my pants like watery stool came out. So i realised yes i'm a lactose intolerant now, i asked my internist about it he said if it's like this i don't need to be tested for it, i should avoid lactose. So i'm here again i just started to feel a little better i wanted to eat something sweet so i ate some "ricola hard candies" and some "verbona hardcandies" which the pharmacist say are gluten free and some "gluten free potatoe chips" and some "gluten free raw dates bars" the things started to happen: I started to feel a headache for 2 days, after 2 days i still have the headache but i started to feel anxiety again, after the next 2 days with anxiety i started to feel a little better but the anxiety was changed to a huge throat pain, like a thore throat or a dry throat or a burning throat a mix of these 3 i can't really describe i still hurst at the moment i'm wrtiting this. Then shortness of breath came around the 4rth day, and it went away gladly around the 5th day but my thore throat is really bad at around 16:30 every day and my headache is still here. It's like my eyes want to come out of their place, and it's worse if i sit down or stand up. It's like i'm fainting cause of bad blood pressure but my blood pressure is good since i can test it at home. I never fellt this from of anxiety (or idk what this actually is) before... So i went to my internist again and he told me that i must eat antidepressants... So i'm here again that i don't want to take those pills and i'm writing this story to you. I have a huge vitamin D deficiency and some potassium deficiency that my internist knows about and i eat vitamin D orally "1000 NE kolekalciferol" twice every day. I eat lots of bananas and pomelos for the potassium since i can't really take these huge potassium pills atm and i'm going for another potassium serum test tomorrow. I really don't wanna take these antidepressant pills i may just lie to the doc cause i told him i wont take them but he still perscribed them. If anyone actually ready this wall of text and may give me some tips or anything to help me cure myself i would reall appreciate it. Maybe i just glutened myself somehow?! I really don't know since i think i'm eating gluten free. Please i must have someone or some thoughts on my side. Thanks in advance: James
Okay well don't want to make this into a long story or post but I do have a lot of questions and information to share with you lovely people. If you want the main reason I seek help you can skip the 3 big paragraphs but they are very informative of my lifelong struggle with metal illness. Soo.. I ended up smoking Cannabis for many years of my like (14 years ) and I am now going to be 30. I found that marijuana really felt good and helped me feel a lot more calm and helped me sleep through the night everynight. I have always been a go go go person with too much energy. And as child I would always get very irritated and had some anger issues (temper tantrums), those went away perminately when smoking weed and just growing up and out of them i think. I would also drink a lot of beer on top of that. I have been on antidepressants (pristiq , Citalopram not at the same time ) for about 7 years since I noticed started noticing anxiety tremors and unbearable anxiety and social anxiety, and an anti-Psychotic for sleep for about 5 years ( Seroquel) . I hated being on these things but they were my only way of coping with the outside world. About 7 months ago I was still smoking marijuana and drinking almost daily while on Pristiq and Seroquel ( I know really bad ) but I barley any side effects besides brain fog in the morning till about 1 or 2 everyday from the seroquel which I found bearable and livable until I noticed the anxiety returninga and my crazy go go go hyperactivity. So back to 7 months ago researched magnesium glycinate which I noticed worked very very well making me feel almost normal again when I took very high doeses (600 -1000mg a day ) I used this amazing feeling from the magnesium glycinate to take advantage of stopping and getting of my meds that I was on (pristiq 50mg and Seroquel 50mgs) and I weened off them perfectly and slept fine with the help of marijuana. Then one day I had a magnesium overdose and was throwing up and having diarrhea all day. Magnesium wasn't working for me anymore as I assume I was deficient when it was so beneficial but wasn't deficient anymore hence the reason it stopped working . So I then went to a naturopath to help me check my levels of everything. First he tried some vitamins that usually help anxiety disorders before doing all my blood test and they seems to work for a bit then made my anxiety worse ( I was still smoking cannabis everyday and then started to notice it wasn't helping anymore but making me very hyperactive , increasing my anxiety and heart rate). When I decided to quit marijuana because it no longer was helping me but making things worse THIS IS WHERE SHIT GOT REAL, the withdrawal effect from stopping marijuana after 14 years of daily use made me have such crazy anxiety and I couldn't eat was loosing a pound a day and I need to eat a lot everyday to even maintain weight and not get scary thin. I am a male and want to put on muscle and not be skinny. ( I am a ultra rapid matabolizer as said from my genetic testing i just got done) which makes sense why i would loose weight so fast and why i need to eat so much to maintain weight. My stomach was hurting so bad and I have never had stomach pains like this just always had D after eating pizza and fast food which left me thinking i'm just a little lactose or can't handle fatty foods very well. My anxitey and stomach pains brought on my hypochondria so I needed test done. I did the barium swallow and my xrays just showed some indigestion. Then I told my doctor I wanted a test for celiac as my bowl movements have never looked this way (floating ). So my blood test results are Total iga 1.71 igG 24.8 * positive Iga AB 11.4 So I have celiac . It made sense as to why I always had D after eating fast food or pizza. The main reason I type this is that my anxiety has been way worse now that I have been gluten free for about 4 or 5 weeks. I have new insomnia which I never had before only sleeping 2 out of every 4 days (the days I don't sleep I don't get one second of sleep) I really don't want to go back on meds but it seems like that is the only way to get my life and sanity back. I'm hoping my life long anxiety and hyperactivity was because of gluten and after 6 months to a year i will be rid of it or be the person I feel I am inside my mind. I have been seeing my doctor ever two weeks and she seems to be getting fed up with me and ask why are you here (me- i'm here seeking help and opinions before I jump back on these life threatening meds). I have been seeing my naturopath every week even twice a week and have tried all the herbs and vitamins there are for me. We did all my blood test to rule out thyroid, testosterone, cortisol issues. We only found that i had high magnesium level not to my surprise, and low vitamin d (60 nmol/L) . Thankfully I am absorbing all my nutrients very efficiently still. So the past 3 weeks I have tried passion flower, valarien , pharma gaba, kava kava and this one 3 in one called neuropas balance (obviously on different days) and it seems like I am getting worse, sleeping eludes me and my anxiety has made me lose touch with all my friends in the past 3 months. Lavender oil pills 80 mg 2 a day has been one the main thing besides some benzos I was prescribed when going to the doctors 3 weeks ago as a mess in complete panic for no reason. Taking benozos as needed has helped me actually live, but i don't want to have to take them because the withdrawl can be worse then the actual reason to start them . Tried vitamin d for a week or so but something has been increasing my anxiety and insomnia that I stopped all of my suppliments ( vitamin E was in my vitamin d drops , doesnt vitamin E have gluten in it ?) I am also trying to sleep at night so i was taking life brand gravol , which i now saw it has Sodium starch and maltodextrin ( very suspect ingredients for gluten). So maybe I have been getting glutened every night just trying to sleep. I saw a therapist who prelims for a psychiatrist and said I have mild depression as well when I said I have lost interest in things I use to enjoy (music, activity's, friends, games.) I am at the last of my will and I would hope someone here has some insight or maybe have the same type of symptoms from gluten. Here are some questions .... Will being gluten free for 6 months to a year help me see some relief from this hell I am in? ( anxiety , insomnia and depression ) I have read some good stories on how people get relief from metal illness after 3 or 6 months to a year or two. The longer I ate gluten means the longer my mental recovery will be ????? I really don't want to be on any meds but at the moment I am so debilitated that I need some sort of help somehow right now or else I am just wasting my life and living in mental pain. Would going on meds while being gluten free help me with the time it takes for my gluten related mental illness to go away ( I hope to god it is because of gluten because if it isn't I will be doomed and will have to take horrible meds my whole life and have side that later in life will be horrible . ( Seroquel and benozos lead to early Alzheimers and dementia as an example of horrible side effects, not to mention blood clots and other horrible things ) What should I do? as I am out of ideas and drive on how to better myself and after trying so much and getting nowhere or getting worse in the process. Thank you very much to whomever read my whole story and thank you very much to who replies with positivity as I am in great need of support right now. and thanks to this great site , it has helped me very much ! Edit - ( okay anxiety and a little depression is one thing but my main worry now is NOT SLEEPING. Eveynight that I can fall asleep I don't feel like I'm sleeping at all, no rem sleep at all and only for max 4 hours a night and I wake up totally energized and unrested. Those hours I am supposeably sleeping I hear and feel my dog move on my bed and I'm never in a deep sleep. So I even question mysef if I am actually asleep for those hour. Is this gluten withdrawal real and even at 5 weeks gluten free? I need to get a real nights sleep so I can feel rested. It's been 3 weeks without any "real" sleep. )