Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up


Advanced Members
  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About Lakme

  • Rank

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Hey. It's me again with another thread. I am still in the diagnostic process. Visited a GI at a University hospital and he said that if I were a celiac I would probably be deficient in electrolytes. I was deficient in Chloride at one point but my levels returned to normal after a few months. I got that blood test when my symptoms were at my worst and my chloride was only a couple points below normal. I had another (painful, the nurse missed my vein and had to look around for another. Ouch!) blood test at the hospital. They weighed me and my weight remains stable around 131, but I'm still underweight at 5'11. I'm still going on the gluten free diet, despite the fact that I have been glutened several times, both by my grandmother who is trying to keep gluten out of my diet and by restaurants. I did manage to gain a couple pounds a couple weeks ago but dropped back down to 131 again I have typically been eating 1 meal a day since at least high school, with maybe a couple of snacks throughout the day, like ramen or a peanut butter and jelly sandwich. I never really bothered to weigh myself, but when I first weighed myself last year when my problems started I was 145 pounds, so I'm going to assume that I've always weighed around 145. The glutenings tend to mess with my appetite which goes away after a while and then I start to feel hungry again. I ate a protein bar which didn't say if it contained wheat, just that it may contain traces of wheat. I'm not feeling any drastic effects yet but I'm starting to hope I don't go back to square one again. The doctor wants to test me for H Pylori, so I have to bring that in later this week. I hate breakfast food, so I hardly ever ate in the mornings, even if I was hungry, and lunch was definitely out of the question, because I always hated school food. My question is, how does one like me gain weight back? I have a feeling that if I didn't already have such poor eating habits i'd probably be at least 10 pounds heavier with more weight to lose. I actually just spent the last hour trying to pile on the rest of the calories i needed for today. I spat out that protein bar as soon as I saw the warning. Like I said. I typically weigh 145, but I did cut a lot of chips and other crap out of my diet, however, I was 130 pounds before I started a gluten free diet and my dad insists that it's because I "don't eat" and even though I reply and say "I've always only eaten once a day" I wonder if he's right. I doubt a sandwich or a bag of chips could even make that much of a difference? it's certainly healthier. I've heard of people having trouble losing weight, but I just hate being so damn skinny. Can I borrow any pounds from you guys?
  2. You mentioned that you noticed a difference in pain when "Going gluten-free". If you did this before you got tested, especially for an extended period of time, this might unfortunately interfere with a diagnosis. I personally am not sure if I would want to be diagnosed as the symptoms are beyond debilitating, but it might be different for you. Like Jmg mentioned, it might be more helpful if you created your own thread instead of replying to this one. I made this thread because I was curious about what diagnosed celiacs went through before they discovered they had the disease and I felt that I could relate to a lot of the terrible symptoms. Replying to this thread instead of creating a new one might interfere with the answers you're looking for, but if you ask me, it seems like gluten might be a problem for you even if you don't have celiac.
  3. Lakme


    I've been suffering from anxiety and depression since I was a kid. It wasn't until my symptoms showed up last year that my anxiety really went through the roof. I think a lot of people can relate to you in terms of anxiety, and this seems to be aggravated by the number of symptoms that a celiac can experience while going through the process of trying to figure out what is wrong and working with doctors to achieve a diagnosis.
  4. As someone who is going through a similar situation, I hope you can get an affirmative diagnosis and not have to jump through any more hoops to figure out what's going on with you. I'm wishing you the best, and I hope the both of us can get through this unscathed.
  5. I would have bouts of discomfort and nausea after eating certain foods, but I always assumed that it was because I was eating garbage like corn dogs and etc. Did you ever have any symptoms of vitamin deficiencies like angular chelitis? I had this in high school all of the time, and when I tried to scratch it off my lips would get all red and it looked like I was wearing lipstick (I'm a guy you can probably understand how embarrassing this was). I went to the doc to get a b12 shot twice and most of my current symptoms cleared up, but it was temporary. I don't remember anything else besides having diarrhea often which I always figured was just because of my unhealthy diet.
  6. I do not have DH, but if I have ever had it I would not remember. From what i've read I'm in the beginning demographic of when DH would appear (Which is apparently 20-40; I'm 20) but from what I can tell I don't have anything other than hyperpigmentation on my legs and a few bumps and similar things on my legs. Never had DH. My aunt has a weird rash that doesn't go away and her doctor doesn't know what it is but I wouldn't know unless I saw it again. I have 2 family members with conditions related to celiac. My mother, who is schizophrenic, and my aunt who developed MS in her 50's and has had it for 20 years, which I hear is very rare. My mother's side of the family also has a host of issues including thyroid related and etc, but the general consensus was that these things were part of aging and nothing else. I myself have had things like post-nasal drip and other minor symptoms for years because I just assumed they were normal. There have also been a couple of instances where I ate something like a PB&J in my childhood and threw it back up for no reason. I'm known to be a picky eater, and I've always avoided certain foods and condiments that make me gag like ketchup. I'm probably just going on, but I never really felt too normal, but I just kinda figured everyone was like that.
  7. THAT'S EXACTLY WHAT I WAS TALKING ABOUT! I used to watch anime all the time and one day my brain just gave up on me! It was so hard to get through the day not being able to do the things I love the most. When I first started to have problems it started to affect my gaming too. I have such great dexterity and suddenly my fine motor skills had gone to crap. More recently I even felt dizzy trying to type my password onto my Iphone and typing. It was god awful.
  8. It's forgot how long it's been since I've been glutened, but I think it's been about a week. Most of my problems are in my right eye. They're really dry too. I went to the doctor in January to get a b12 shot and my symptoms disappeared for a couple of days, including the dry eyes. Did you ever get this really uncomfortable symptom when you turned your head in front of a lamp? Like a light shining through the surface of your eye and blinding you a bit? I hate it. I think I have a bit of nightblindness too. Most of the digestive symptoms dissappear quick. Loss of appetite, bloating, feeling full after eating a little bit, especially anything that's mostly bread, like french toast. The b12 sublinguals helped with most everything so that's why I associated it with pernicious anemia. After I started to get chest pain, I knew that it was somehow the sublingual tablets, but I didn't think it was because they had wheat in them. But yes, most of my constipation is gone, and I don't get weird stools anymore. Way back in November I would get these really dry bowel movements that were solid and looked strange, and they would fall apart when they hit the bowl. (TMI I know but this is a celiac forum) When I get glutened, I start to lose feeling in my left arm/leg and my abdomen gets hard and uncomfortable. This happened a couple weeks ago when I accidentally ate these packaged "chow mein" noodles that contained wheat, and more recently when I went out to eat at a Japanese restaurant. That was on saturday so it's coming up on a week since I've been glutened and I'm starting to feel better. One other thing I noticed is that I start to get these creases on the side of my gums. I'm not sure if they're from my teeth but they start to slowly fade away when I don't eat gluten. There's also a whole list of other symptoms I could describe like my feet turning red in the shower, these tan lines on my legs that haven't gone away since september, pale nail beds both on my feet and hands, and sinus pressure that won't let me breathe through my nose correctly. I'm not sure if I've lost any hair, but way back in the summer, some of my friends joked around about how I was "bald" and I figured it might have been because I wear a hat all the time (I'm only 20 years old) but I'll just leave it at that for now.
  9. So, my long journey has brought me here, from several health anxiety and autoimmune forums I've finally arrived at something I hope is the cause of my problems. My more debilitating symptoms started about a year ago, when I got food poisoning, although it may have been even before that. Looking back into my childhood, I had anxiety and a lot of the behavioral symptoms of a celiac. The only thing I'm not quite sure of is that, standing at 5'11, I'm not sure if I could be so tall, or perhaps I would be even taller. When I was a kid, I threw a hissy fit whenever my grandmother tried to drag me to the doctor. I kicked and screamed when she tried to take me to get a blood test. I hated anything invasive. The standard cognitive tests and dentist visits were fine, but I absolutely refused to have my blood drawn, except with the prick of my finger, which still bugged the hell out of me, and I teared up when that thing scraped me. I probably would have been diagnosed with celiac a long time ago, if I had it. I've been depressed for most of my life with a touch of anxiety. I did terrible in school because I didn't feel like doing the work. I had great test scores. At the end of the year, whenever we would have those tests I would pass with high scores even though I did poorly in about half of my classes. My work ethic paled in comparison to my intellect. I ended up getting kicked out of school because of an incident I became involved in my junior year. I had finally made friends I struggled so long to get, and in the blink of an eye they were all gone. I held firmly the belief that those I had gotten into trouble with would come after me for revenge because they were part of a bad crowd. I was forced to keep going to school because I was still underaged, but tried as hard as I could to stay inside and away from people. I had to go to counseling because I told the police I had anger issues and that was why I snapped in that situation. I became reclusive, and only stayed in contact with my closest friends. I honestly wanted them to think that I was dead. I ended up going through 2 rough situations, one where my grandmother's husband died of colon cancer, and one where my uncle died of liver/kidney failure - both related to heavy drinking and drug use. My anxiety spiked. I heard the death rattle for the first time in my life. I was convinced that my family didn't do enough to help my uncle, but in fact it was him that had been doing it to himself. He passed away the night I learned that he "had 2 weeks left". He wasn't even on any painkillers. I started to develop strange thoughts where I was convinced that I would be the next to die. These instances were just the beginning of my emotional problems. It took a very long time for my symptoms to fester. In the November 2015, I started working my first job. Manual labor at that. I was helping my boss install air conditioners and heaters in pristine houses in different parts of LA that cost up to 5 million. My boss started to talk about having me work there more and as someone who had plans that involved going to college you can probably imagine the discomfort I felt at the idea of working on air conditioners for the rest of my life, even if the money would be good. This was when the anxiety attacks began. Although there weren't any physical symptoms then, I started to feel my depression and anxiety weighing down on me. On Christmas 2015 I had an anxiety attack that presented with pain behind my right eye, something that sent shivers down my spine. I eventually got laid off by my boss in January and went back to lounging around my house for another month. I didn't really notice much wrong then, I was convinced that I might have to start taking antidepressants for my anxiety attacks pretty soon, as they would bother me a lot. One night, I got hungry. It was 9pm and my grandmother wasn't home yet to make dinner, so I asked my Grandfather to take me to Panda Express, one of my favorite places to eat. I brought the food home and one of the first things I noticed was that it tasted vile. There was something off about the rice. I couldn't quite put my finger on it. It was my favorite food, so naturally, I ate the rest anyway without a second thought. A couple hours later I had a nauseous feeling in my stomach. I knew I had gotten food poisoning. I spent the next 24 hours vomiting and squirming around on the floor until my symptoms went away. But this wasn't like other times I had gotten sick. This time was different. When I woke up that morning, there was something wrong with me. Not with my stomach, but with my vision and my eyes. No, my vision wasn't blurry, but there was something else incredibly wrong with me. I take pride in reading and enjoying my foreign programs in which I have to read subtitles, but for some reason, I just couldn't focus. I couldn't read. I couldn't watch TV. I couldn't do anything that required a decent level of mental acuity. I brushed it off and figured it would probably go away in a couple of days. When I walked to the liquor store the next night, I noticed something strange. The halos around the street lights seemed larger and more pronounced. Although I'm not sure what it was, if that was even the problem in the first place, I knew something was wrong. My anxiety was the worst it had ever been. I hadn't been to a doctor in years, let alone care about my health. Most of my anxiety had to do with my surroundings, but suddenly I was compelled to google my symptoms. I had a strange feeling behind my eye and I started to see rings around lights. I thought I had glaucoma. The visual symptoms became worse. I started to see visual migranes, hard to explain, but they're like patches in my vision, kind of like visual fog but larger and more pronounced, and with afterimages whenever I see lights. It's aggravating to say the least. Anyways, I had about a week of these symptoms before I dragged myself to the eye doctor and told her I was convinced I had glaucoma. She looked at my eyes and said they were perfectly fine. I was a tiny bit nearsighted, but I had enough visual prowess to drive or doing anything else without having problems. This came as a surprise to me, I couldn't even read or watch my favorite movies! I was convinced that all of this was just anxiety at that point. Loss of concentration didn't seem that bad. I was just glad I wasn't going blind. Then I REALLY wouldn't be able to watch TV. A week passes by before I develop another debilitating symptom. Severe neck pain. I woke up one morning and it was agonizing. I'm not sure when I noticed I had tinnitus, but this was aggravated to say the least. The migranes and anxiety reached their peak. At that point I was convinced I had developed some form of meningitis. Falling asleep at night was like passing out after a long day of not being able to do anything. I was having panic attack after panic attack. I thought that it might be a tumor instead and I was convinced that I wouldn't even be alive for 20th birthday. There was a weakness that radiated down my left arm and leg. At this point, I was desperate to get even a month left to live. I was constantly pleading to a god I stopped believing in a long time ago for more time. I went to the doctor for the first time in years, convinced that I had meningitis. Both my grandmother and my GP laughed at the notion. The GP diagnosed it as nerve pain, gave me antibiotics for my constipation, antidiarrheal medicine, and an antianxiety and sent me on my way for a couple weeks. I took the antibiotics for a bit but ended up spilling them into the sink at which point I figured I probably couldn't use them anymore I don't remember any of my gastro symptoms then as i didn't think anything of them. All I can remember is being constipated for days on end, which wasn't very fun either. Eventually, I went back to the GP and she prescribed me elavil for my tinnitus and my nerve pain, which made just about everything that bothered me wither away at that point. The strangest thing, actually, was that my symptoms went away BEFORE I started taking the pills. Of course, I didn't know what happened, but I had a day when my symptoms went away before coming back again and I didn't want to take a chance, so I started the medication right away, and they never did come back. Swell right? WRONG. I had a happy few months between Late March and August that seemed swell, except that I couldn't quite enjoy things like I used to, and I was saying things to my online friends that made them shy away from me. I was convinced at this point that I was just going crazy. My mother is schizophrenic so I just sort of took it as is and was getting ready to tell my doctor and see if the symptoms would go away if i stopped the pills. I didn't do this in reality, as a matter of fact, I told the GP I felt great and she suggested that I increase the dose from 10mg to 20mg. I didn't do this for a while, but I got into an argument with someone that I was just starting to become friends with and decided that enough was enough. I popped that extra 10mg and was ready to crank it up a notch to keep the depression at bay. It seemed to be working, but about a week later, I began to develop a burning pain under my right rib. Uh-oh! I started to google again, but my anxiety was still pretty much under control. I tried to convince myself I had colon cancer, but it didn't hit me hard until I told the doctor I thought the pills were causing the pain and that I was going to stop taking them. This is pretty much where things took a turn for the worst. One day, after I had a couple corn dogs and french fries, I went to the bathroom to find that my stool was yellow and there was blood. Immediately I panicked and called my GP. A lot of things have scared me these past few months, but none more than that instance. The occult blood test came back negative, what do you know. I was pretty healthy at around 147 pounds, my average weight. I told myself at that point that I would turn my life around before things got any worse. I wanted to go vegetarian and avoid meat for the rest of my life. That seemed like the best option at that point. Well, I was wrong, because I was probably b12 deficient, and where does b12 come from? Yeah.... Well, it probably wasn't colon cancer, so what else could I convince myself it was you ask? Pancreatic cancer. I rolled around in bed, night after night, feeling extremely tired, and at the same time, not being able to sleep. When I closed my eyes I had visions of what my organs would have looked like with cancer spreading everywhere. Other times I would envision my own funeral 2 months later after a very painful death. I was very spaced out. It was beyond brain fog. Not only was I so bloated I couldn't eat, but I just made it worse by taking immodium. After that it was god awful. If I was dying, I just wanted to know what was wrong with me, if I had any fighting chance at that point. I think I went down to 136 at this point. I got the blood test and was prescribed a different antidepressant by my doctor. I waited until my test results came back to take it. By that time, I had dark circles under my eyes and white patches on the insides of my cheeks. I came back to get the results of the test, and to my surprise there was absolutely nothing wrong with me (at least that could be seen from my blood). I already started eating meat again by this point. WBC 8.7 (normal) RBC 4.94 (normal) I wasn't even anemic. I swore that my skin started to yellow. I was constantly checking my eyes and suffering. I decided this was the last straw. I started to take the medication the doctor prescribed me, and I felt great! But a couple days later, I took the full dose and woke up the next morning, not being able to breathe and with a super fast heart rate and dilated pupils. This was my first time in the ER. The docs were dumb as rocks. They told me that it was "just anxiety". I couldn't even feel the move the left side of my body. I nearly died, and those kooks told me that I had anxiety! They made me sit in a chair for 30 minutes while the reaction went away! (not to mention I got the bill recently from that ridiculous debacle and they're trying to charge me $4000 for letting me in the door and sending me out.) Anyhow I'll summarize the next few months between the ER incident and now, including a 2nd time I landed in the ER, wowee! -Lost 6 more pounds between that point and about a month ago. -Kept taking paxil and had several more reactions similar to the one that put me in the ER. -Learned about b12 deficiency and was convinced I had pernicious anemia for a while. Taking multivitamins staved off some of the symptoms, including the bloating. -Some mulitvitamins I bought actually made me feel worse including making my joints hurt, although this may be actually due to wheat, as i've learned -Fatigue became progressively worse. I've got Lymph nodes raised all over my body and I was sleeping most of the day before I stopped eating gluten entirely -Was constipated for days on end. My bowel movements improved with experimentation, although I still couldn't figure out what the problem was. I knew that things like French Toast would make my stomach hurt, but I didn't draw the conclusion because I was convinced that fatty foods would help me gain all that weight back (It obviously didn't. As a matter of fact it was probably why. I'm still sitting at around 132 but at least I'm not dead or getting worse from what I can gather.) -Extreme brain fog until I started taking large dose of sublingual b12. I play a lot of video games and my coordination was god awful. -Took a non-sublingual b12 pill which made me bloat big time. I should have checked to see if those pills had wheat. -My hands and feet felt like blocks of ice, and my feet burned when I got in the shower. -Developed Tachycardia. I'm not sure when, but my resting heart rate is unsettling. Doctors said nothing about it -Diagnosed myself with several cancers and had several panic attacks which I used my b12 tablets to quell. -Tried to take Elavil again, and woke up with a strange feeling in my left arm, so I stopped taking it. I ended up in the ER for the 2nd time a few weeks ago. This time I was sure I was going to get the answer I didn't want to hear. "We've examined your chest X-ray and found cancer spreading throughout your body" or something along those lines. I knew that there had to be something going on. I went in there for chest pain, but I had to tell the GP about what was going on. The weight loss, the abdominal pain that mysteriously disappeared months beforehand after I took the pills. He suggested that it must be some sort of malabsorption/malnutrition that was doing this, and I was convinced that an H Pylori infection was the cause. Anyhow, my chest X ray came back normal, as did my blood test, and when I got home, my grandma suggested that I look into Therapy. (as if that would somehow help with the chronic fatigue and other debilitating symptoms) I had nobody else to turn to, so I emailed my grandma and told her everything that was going on. She told me that she thought I had celiac disease, and so far, the results aren't too bad. I've gotten "glutened" a couple times so far, but my constipation is gone, and I've gained a little bit of my weight back. I'm not even sleeping as much as I was. I'm still going to see a gastro, a dentist, and a derma about my more serious concerns, but overall, I don't feel too crappy. I've even got my appetite back. Anyhow, if you've made it this far, I'm glad, as it has been a really bumpy ride for me. I've still got a lot of health anxiety about cancer, but I finally feel like I'm on the right path. I didn't even think I would be alive right now, especially not at 2 in the morning, with only minor aches and pains. I hope I can eventually get diagnosed and get used to this place.