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  1. I think it was a combination of things that set off my illness. Before the end of August when the severe symptoms came out, I had noticed symptoms such as a rash - I actually convinced myself it was some weird parasitic rash because it seemed to have come out exactly when I was poked by a king crap leg - and also bloating, chronic constipation, and reflux. I was diagnosed lactose intolerant in 2007 and I assume this may have also been when the gluten intolerance started.

    I think what set my illness off was my eating disorder - a combination of severe anorexia and bulimia. I don't think the anorexia was super harmful in term of gluten intolerance but the bulimia was the bad one. My binge foods were carbs, all carbs minus some lettuce, ice cream, and chocolate. I think that just made everything a million times worse, whatever problem was there was exacerbated. However, I also might have to consider that my brain injury may have played a part as it caused quite alot of changes in my mood which caused an increased in carb eating before my eating disorder took hold. I started loading up on carbs to deal with my depression in 2005 which resulted in a 30lb weight gain (that December is when my anorexia began). I also think the problem was that when I was in recovery from anorexia (re-feeding) I was on a carb-heavy diet with tons of gluten in it so, my intestines that hadn't had any food in ages were being pushed these massive amounts of gluten, I think it was just a bad thing all around to do (if I could go back, I definitely would NOT do the same re-feeding process).

    Oddly, months after I successfully go into recovery from my eating disorder (both anorexia and bulimia) my body decides to go into some sort of crisis which is what happened in August when I couldn't get out of bed for a week. I had crippling abdominal pains and I was exhausted. I barely ate and what I did eat was (unfortunately) pasta and crackers. I had a CT scan, 2 ultrasounds, was in 2 doctor's offices, was in the ER. No one knew what the hell was wrong. I came upon gluten intolerance myself. I cut out gluten from my diet and within 3-4 days it was like heaven opened up and a miracle took place. And just in time too, as college started just a few days later.

    Everyone told me the symptoms I was having all along were something else. Bloating (eating disorder recovery), chronic constipation to the point of being in the ER once (eating disorder recovery), rash (ezcema which runs in my family - even though it never went away in 3 years time and actually got worse just before the August crisis).

    So, there's a combination of factors at play . Basically, it was all down to over ingestion carbs, at least that's what I think.

  2. On a appointment with my neurologist, it was discovered that I'm having neurological impairments. I knew the obvious signs of memory issues, confusion and such but apparently I'm unable to walk heel-to-toe and unable to close my eyes without falling over. Weirdly, I'm perfectly okay when it's dark in the room with my eyes open. So, I'm scheduled for an MRI.

    That was Friday. Sunday, after hauling in groceries, I'm struck with extreme fatigue, chest pains, and a feeling of a high pulse. The symptoms were so bad I had to sit down like a blob of Jell-O for 15 minutes. Dismissing it as overexersion as it passed, I got up, rather sleepily, and continue on my day. It happened again that evening I thought it was weird but again dismissed it as overexersion as I was again hauling things out of my car. Yesterday it happened about 6 or 7 times. But I couldn't ignore it any longer. The episodes lasted 30 minutes to an hour during which my pulse was not exceedly high. 90-95 bpm sitting and oddly it would jump, when I'd pry myself up to standing, to 115-125bpm. My normal resting pulse is around 80 bpm. But during these episodes I would become so tired I'd barely be able to stay awake - try being in the middle of class when these happen. And that's the thing too - they happen after exercise (walking up to the 3rd floor, walking across campus, etc) but also when I'm just sitting in class or watching TV.

    I've read some articles on how gluten intolerance is linked to pericardial arryhthmias. The problem is...there's absolutly no gluten in my diet. So my question is, can the problems that can be caused by gluten be delayed? I haven't actually knowingly consumed gluten - as in, I haven't gone out and had a piece of cake or pizza or bowl of pasta or what not. I'm actually terrified that this will not ruin my college career - I can't get any work done, between my neurological problems with memory, concentration, etc and the fatigue from the cardiac problems leading to my sleeping all the time - but this is my heart and brain. I feel like my life is literally deteriorating and I can't stop it.

    So, my thought process is this: that my symptoms are a delayed effect from years of gluten consumptions while being gluten intolerant and not knowing. OR that something in my diet contains gluten - possibly my medications, the brand names are said to be gluten free but I take generics and I cannot find info about these specifically being gluten free or not. OR my electrolytes are off causing the heart problems (hypo or hyper), I've already discontinued my calcium supplement out of fear of hypercalcemia. OR I'm moderately/severely dehydrated without knowing it which may or may not be related to kidney problems - I have noticed for the past month that I only urinate 2-3 times a day. OR there's something wrong with my brain structurally like a tumor which is completely unrelated to gluten intolerance.

    I just don't know what to do at this point. I've got a team of doctors but they seem puzzled by some of my symptoms. I want to be in college desperately, I love it, but I'm barely functioning work wise - however, the work I do complete is always of good quality. How do I cope with a life that is literally falling apart? Maybe some of you guys and gals with experience could advise me on how to handle the situation? I'm really confused as to my next step. Seriously was debating just going to the ER tonight after one of my heart episodes lasted 1.5 hours. I don't know...help/advice on the general situation?

  3. So far I've eliminated: gluten, xanthan gum, rice, and corn. I take a Lactaid pill when I eat dairy. I need to drink milk to take my meds else I will get ill, I also eat cheese and cottage cheese for protein.

    My newest symptom: ingestion of ice cream (well, frozen yogurt) results in a severe depressive state to the point where I'm considering doing myself in and crying uncontrollably. Yes, I tried ice cream, because I found a brand that was gluten free and that was without xanthan gum.

    Aside from that, my mood overall is unstable. Sometimes I'm up and sometimes I'm down. Today, I'm up. However, the fatigue is doing me in. I sleep too much, it's difficult to pry myself out of bed. My rash is back. Concentration is really difficult in class, memory problems are abudant. I'm spacey, zoning in and out a lot. I'm constantly nauseated. Periodic lightheadedness. Also, my hair is falling out, it's incredibly thin right now. I'm horrified that I'm losing my hair, not exaggerating on the word horrified either. So, somehow I'm eating something that's not agreeing with me. Can anybody tell me what it could be. These are the ONLY foods I ate for the past 2 weeks.

    - prepackaged peach fruit cup (no stated gluten, xanthan gum, etc)

    - fat free milk

    - raw apples

    - extra sharp cheddar cheese

    - raw carrots

    - orange juice

    - fat-free cottage cheese

    - omega-3 eggs

    - smart balance butter

    - pepper

    - sun dried raisins

    - sun dried cranberries

    - fat free yogurt

    - vegetable soup (no gluten, etc)

    - peppermint tea (from a tea bag with hot water)

    - diet snapple/occasional diet soda

    - water

    - one serving Chex (caused problems)

    - one serving ice cream (caused problems)

    Obviously, that's not alot to choose from. I have no idea what is causing the symptoms. Maybe someone could point me in the right direction?

  4. I have issues eating regular ice cream because they almost always contain xanthan gum - are you able to eat that? I know that I tried regular ice cream multiple times because I missed it so much and kept getting reactions - not cotton mouth, but the feeling like I was about the pass out, very dizzy, etc. Also, when I looked online at my favorite coconut ice cream it said it contained gluten even though nowhere on the package did it mention that it contained gluten. While I know that your ice cream states gluten free - just checked - I know they also make ice cream such as cookies and cream, double fudge brownie, etc which obviously all contain gluten, possibly some cross contamination? I've found that home made smoothies are the best (I make them in a Margaritaville blender that crushes the ice automatically, expensive but worth the investment if you use it often enough). You can also take Yoplait Whips yogurt and put them in the freezer. It's not perfectly like ice cream but it's pretty close - lots of flvors too - even chocolate, although personally raspberry ranks at the top of my list.

  5. I understand this completely. I'll be 22 in a month and I am in a similar situation, stuck in the past. When I was on a successful gluten free diet I was really outgoing, now I think I may be reacting to something or another or possibly have a flu so I'm super exhausted. But, in general, since going gluten free my personality has blossomed. I'm so much more outgoing and have the ability to talk to people more. In my past, I really didn't have that ability, I was too exhausted and with my history of depression, I didn't want to. I fully believe that my gluten intolerance is strongly related to my mood and has a huge influence on it. Anyways, now that I'm outgoing and able to talk with people I'm stuck. I'm stuck with my past behaviors. It's almost as if my past, being mostly alone, has become habit. Habit is difficult to break, especially because it is comfortable. I've started branching out, I've joined a club at my college and the people are great. I even had a conversation start with someone over something as simple as my purse. I didn't even know her, we just started talking and I managed to hold my own in the conversation. Being random can really pay off. And exposing yourself to social situations will help you meet people more - like simply reading a book at the cafe in a bookstore, you never know who may stop and say "hey I know that book!".

  6. I used Excedrin Migraine and Excedrin PM when it was on the market and it worked lovely. After it was removed I took the generic I found at Walmart. Equate Migraine Relief and Equate Acetaminophen PM. It's identical in primary ingredients to Excedrin except the PM version contains slightly less diphenhydramine than Excedrin had (25mg versus 38mg). And yes, I saved the bottles of Excedrin for comparison! I feel that it works for me just as well when I get migraines (Side note: I was also prescribed topirmate because I was getting migraines 5-6 days a week. So, migraines are infrequent now).

  7. Oh my gosh, that is so obvious I can't believe I didn't think of that.

    The only problem is that I can't find any information about gluten-containing drugs. Invega has absolutly no information on it. And then I take generics for all the rest, the brand names are safe but there's no information on the generics. I'm going to change multivitamins as I found that it's not guaranteed gluten-free.

    Wow. So obvious can't believe I didn't think of this!

  8. Thanks for the replies everyone.

    I'm still trying to navigate being gluten free (and whatever other intolerances may be lurking...). I think I will take your advice and cut out the corn, I've been dragging around lately in general (taking 3 alarms to get me out of bed, barely making it to class) but assumed it was a flu. I have also been consuming alot of corn pasta. However, I don't understand why these Chex would have caused such a strong reaction. Although, examining the overall eating structure, I ate the Chex in the morning versus normally eating the corn pasta at night - then obviously I might have slept the effects off. Interesting possibility.

    I see a neurologist already because I have a history of traumatic brain injury and am being treated for migraines. I have never had a migraine aura that involved seeing dots, the only aura that I get is when I feel like I'm going to pass out. Soon after I'll have a migraine. And I've been on a medication that decreased the frequency of the migraines to such a degree that they are almost non-existant. I went from having them 5-6 days a week to having 10 within the past 3 months. I have a follow up appointment with my neurologist on the 28th which I was planning on mentioning this to him already. The seizures that I had in the past were, the doctors thought, a reaction to a medication. Now I'm on a literally a handful of meds to control mood and then the above mentioned migraine med - two are anticonvulsants so, this shouldn't even be happening (although I have been on one of the same anticonvulsants for years now so it might be the dreaded "pooping out"). Definitely will be addressing my concern with my neurologist.

    I don't know if it's low BP. It's actually a possibility that I never thought of. When I was really ill and before I was diagnosed gluten intolerant, I went to the doctor and had low BP, I believe it was 94/68 or the diastolic around there. It definately was not the best BP to be walking around with. I don't feel dizzy but, if I'm reacting to the food my BP could be dropping. Although, according to the ER doc, I was dehydrated which was causing the low BP. So many possible avenues. This is confusing sometimes!

    Anyways, thanks again for the replies everyone!

  9. Prior (1 week) to arriving at college I discovered I was gluten intolerant. I had been avoiding gluten and had improved greatly when suddenly my symptoms started to re-emerge. I found xanthan gum made me immediate feel like I was going to pass out so I started avoiding that. I believe I am also rice intolerant as I have been eating a diet heavy in gluten-free foods with rice flour. I eliminated - with great difficulty - rice products from my diet and have been going great (reduction in rash, acne, nosebleeds, etc) However, I have found that Corn Chex causes major issues. I did a quick search and found that Chex seems to be interacting with others as well. That brings me to today, since I was going along fine when I had this bowl of Chex you can imagine the shock that my body went through. I had a "clean slate" so I know that I was functioning along fine and then suddenly it's as if I ran into a brick wall. An overall strange feeling, incredible fatigue, just knew something wasn't right.

    It's happened only a few times but I've had these "seizure like" episodes after eating foods that were contaminated with gluten. Basically I will find myself, like now, at 9:40PM and wonder where the rest of the day went (reference: I ate the chex somewhere after 10:40AM). I call them seizure like because my past actual seizures, from many years ago, were where I would just space out, the difference is that back then I wouldn't be able to talk, I would slump in my chair or to the ground. Now, obviously, I didn't do that. I continued on my day. It was as if I was in a haze but unable to remember clearly anything that happened. I haven't had seizures in years though. Oh, and I have no idea if it's related but, today I noticed flashes of bright little purple dots in my vision.

    Any advice on this?

    Thank you!

  10. Hi everyone, I just wanted to post a simple intro topic.

    I come to this site looking for advice on my rather recently known condition. I'm in my third year of college and was having a great summer until about the middle of August (2 weeks before college starts), which is when my life spiraled downhill fast. I was confined to bed with crippling abdominal pain, nausea, nosebleeds, and extreme exhaustion (I was sleeping 16 or so hours a day). The abdominal pain was so intense that it had me at various doctors getting ultrasounds, a CT scan, I was even in the ER. I was on strong painkillers which only touched the pain. There was a growing list of diagnoses that were being ruled out. Finally, my doctor looked at me and said: "you're constipated, take some Miralax and you're going to be fine".

    I was not fine afterwards as the symptoms remained, I had come across celiac disease and gluten intolerance through web searches and said "well, I've got nothing to lose" so I cut out gluten. Within about a week I did a complete turn around of my symptoms. Plus, I felt even better than I did before I got sick. The persistant acne that I fought with everyday, I cursed at because it wouldn't go away not matter what I did, suddenly cleared. The red, bumpy, peeling rash I had on my hands for the last 3 years suddenly turned into baby-soft smooth skin. My brain felt clear. I had boundless energy. The bloating that I had for the past several years, which made me look pregnant and killed my self esteem, started to go away. I no longer felt like I was going to pass out every time I stood up. No more nosebleeds. No more waking up with extreme nausea. Abdominal pain gone as well. It was like a miracle had happened.

    According to my doctor, "it [celiac disease/gluten intolerance] does not present itself this way". That combined with starting college, I've never been tested for celiac disease. However, I'm not an idiot and can read what's being put in front of me. I'm going to a different doctor if I go back during break, by the way. That one was just filling in temporarily as mine was on vacation - I just needed to see someone before college started.

    Anyways, story over. Now I'm here to find out some ways to cope with the obvious intolerance to gluten. I've also found myself in a tough situation. It seems that xanthan gum causes problems similar to gluten (basically feel like I'm going to pass out when I eat the stuff). I'm also finding re-emerging symptoms (rash, depression, fatigue, cloudy mind, nosebleeds) even though I'm eating "gluten free" foods. So I think I must be intolerant to something in those supposed "gluten free" products. I'll poke around the forums because I definitely have a lot I want to learn. I'm want to learn what other intolerances tag along with gluten (I was actually diagnosed lactose intolerant in 2007, so that's a known one already). I want to learn which tests to get done too, so when I go home on break I might be able to schedule testing.

    Okay, I will end this post now. Sorry, this is so long, I always tend to write too much!