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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

AAtroposP71

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About AAtroposP71

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  1. Yeah I've wondered a bit if I'm not getting all the other B vitamins from food alone and if they'd do me well. Magnesium content in the keto vitals isn't a lot. I try to get some more through food but I doubt it's optimal. I might have to look into that stuff. Interesting about the meats. Unfortunately I need the fat, especially if I'm gonna continue trying this keto thing for awhile, give it a chance to work. I did know about the difference in omega content, but since starting this diet I've been supplementing with fish oil to offset the omega 6's. Hope you'll be able to eat meat again soon, even if in small amounts. So much this. Every day I want to get up and do anything, and can't and it sucks. I want to climb the walls, get away from myself... Ugh, this takes too long, and I'm too impatient. Yeah, looks like I have to cook everything. I figured I'd at least be able to eat raw baby spinach. I need SOMETHING I can just grab and eat, but it gives me the same slightly itchy mouth that fruit gives me. I've been allergic to fruit forever... Don't have this problem with my steamed broccoli and cauliflower. I already cook everything else I eat. (and it's all organic, real food) So annoying to have to spend half my day cooking, not that I have anything else I can do. But what do I do when (or if) I get healthy again and am like, out somewhere? Damn I miss potato chips. I'll tweak a few things here and there and keep trying.
  2. Thanks for all the input guys. Yeah I've had the vit/min panels and all that done and it was all normal. Regardless I've been supplementing with 1,000mcg sublingual B12 daily, 5,000iu sublingual D3 every few days, and since going keto, "ketovitals" which gives me some magnesium, potassium, sodium, and calcium. Also douse everything in pink sea salt and drink a ton of water. For months now I've tended to get at LEAST 10 hours of sleep per night... Usually. I still at times have terrible insomnia, which is what happened the other night, then had to get up early. Got a total of maybe 5 hours and still feeling it now 2 days later despite sleeping closer to 14 hours a night since. So Ennis, you mentioned about lectins, which I'm now reading about, and interestingly, certain things I don't do well with (usually uncooked veggies, aside from onions) seem to correspond to this. I even do fine with peas, but, I cook those. I'll have to start experimenting. The only part that gets me is that I'm reading grain-fed meats are high in lectins. I've read before that the supposed grain/grass fed difference is BS, and in fact the one thing that has never let me down through all of this is chicken, and I just buy the regular stuff for that. Can anyone confirm or debunk?
  3. So, it's been 6 months gluten free, grain free, dairy free... Pretty much everything free, and progress has been pretty minimal. I will say that I definitely feel better than I did when I started, but I'm still nearly completely non-functional. I still feel like I'm not in reality, still can't focus, still pretty dizzy, panic attacks, exhausted, crippling lethargy, muscle twitches, you name it. As I've said before, I've got all my bases covered on CC, have my own pans, etc. Sometimes I do feel like I'm getting better, but then for little to no reason, such as mis-timing a meal, or waking up or going to bed an hour early or late, my body throws a tantrum and everything comes flooding back. The past couple weeks I've been trying a low carb, high fat "keto" diet, which seemed to be working after some of the induction stuff passed, but the other day I had to get up early, and since then I've been disoriented, derealized, and exhausted. It's impossible for me, or anyone, to be as consistent as my idiot body demands. I've had my vitamin/mineral levels checked, and thyroid checked, all coming back normal. I had an endoscopy done at the beginning of September, and the biopsy came back negative for celiac. All they found was some irritation in my stomach and slapped GERD on me. That said, the same thing happened to my aunt, who is celiac. I don't know how she eventually found out, but if it means doing a gluten challenge, I don't need an official diagnosis from some whitecoat moron. I'm out. I also don't know how many samples they took in my small intestine. From what I can gather, they only took one in there. Unsurprising, as I had a bad reaction to the anesthetic AND the oxygen, and when I called him asking about it he basically told me I was a crazy person. Another awful doctor experience. Anyway, ranting aside, I feel like I've tried nearly everything at this point. The only other thing I can think of to try is to select a red crystal and kneel down by a specific wall and wait for a magical tornado to come take me to the next chapter in my life. Who else here saw little progress in 6 months, and what the hell did you eventually do to fix things? I'm open to any and all suggestions besides 50 caliber aspirin, which is an option, but I'd rather not go that route.
  4. Big D issue

    Hm... What are you eating on the weekends? If you eat less of the trail mix and peanuts and whatnot, it could have something to do with the amount of fiber you're getting during the week, or even something else in there somewhere your body just doesn't seem to like right now. I know it's why I can't eat almonds and pistachios yet, it's too much fiber and I'm on the toilet like I have the stomach flu again. It could very well be a delayed reaction. I know if I eat beets, it takes a couple days before I see them come out the other end. (And it's very obvious.) I would try changing up what you're eating for lunch during the week if possible and see if it makes a difference.
  5. Reaction to smells and anxiety

    Someday I'll hopefully be able to have pizza. Right now I'm avoiding all grains, dairy, and nightshades, so pizza of any sort isn't an option. I'm gonna wait until I feel pretty normal again before I start experimenting. Mom tells me gluten free pizza is more like "trying to be pizza". Having been a delivery driver for 10 years before getting sick and having constant access to real pizza, I'm not too excited for it. I'd prefer to stay completely off any drugs if at all possible. No more chemicals. The psych appointment isn't until the 26th, but I'll let you guys know.
  6. Reaction to smells and anxiety

    Strangely enough, I never have a reaction walking by the bakery at the grocery store, even with the knowledge that they're using flour, and I'm forced to walk by it every time I go. It's right in front of the store. I don't react walking through the bread or flour isles either like I've read some people do. It seems to just be the smell of cooking pasta. Kinda weird, but at least it's ONLY that. I hope you guys are right. I'm also hoping I can find a safe way to train my brain that the smell isn't going to hurt me, to try to resolve it faster. I'm thinking it's worse now since I'm still not well, just slowly on the curve up, and every time I do feel kind of okay, it feels extremely fragile. And I know what you mean about the anger at having stuff shoved in your face. I constantly see ads on TV for places like Little Cesars, Domino's, McDonalds, etc., and I have to admit it irks me. Even when someone tells me like, "Yeah we're having pizza for dinner", I usually respond with a sarcastic "Man, I wish I could have pizza." I know they don't mean anything by it but my jealous little brain sees it as insensitive and annoying. Yeah, it was like that. I felt cornered in my own kitchen by the scary little pot of pasta on the stove, like it was gonna jump off and pour into my mouth. Illogical, but unfortunately something the brain just does. Scary stuff. I have an appointment with a psychologist coming up. I guess I'll mention all this.
  7. So, new weird thing. I went into the kitchen, and my mom had a small pot of pasta cooking. Obviously I could smell it, and I started unconsciously holding my breath a bit, but otherwise didn't think much of it. I was in the kitchen for no more than 2 minutes. By the time I left the area, my heart was racing, I felt panic, and I felt more brain fog. Keep in mind that before celiac struck, I literally lived on pasta, it was my go-to means of sustaining myself, multiple bowls of it a day. It was also while I was eating the stuff that I had my "Aha!" moment that it was gluten that was making me feel so awful since the celiac switch had been flipped on. It's what I now associate with poison. She's cooked pizza with me here, no reaction. Toast, no reaction. I smell her beer, no reaction. It's been only about an hour and everything has subsided. Since there is no way that even if whole gluten peptides were floating around in the air that there would be any way that they'd reach my intestines within 2 minutes, I believe this is an anxiety driven, psychosomatic reaction. It's my brain protecting itself. WARNING! GLUTEN IN THE AREA! Plus, I highly doubt the symptoms would subside so quickly after an actual glutening. But I know it can't hurt me unless I eat it, and it's not like there was flour floating around that I inhaled, stuck to my tongue and swallowed. Anybody else have this happen to them? Has anyone had any success in training their brain to not flip out at the smell of someone else cooking something gluten containing? It would straight up be too much of a PITA to not be able to be somewhere someone is, god forbid, cooking something you can't eat. Sorry anxiety brain, but I'd like to live my life, thanks.
  8. Fascinating. I can't say I'm surprised. Too bad the researchers didn't release the names of the companies, probably for legal reasons. There should be class action lawsuits flying against these corporate scumbags, especially since so many people with celiac take their supplements with the idea that they're supposed to help, when really they're doing more damage. It's another day, another dishonest dollar for them. Needless to say, I'm never taking probiotics of any kind again.
  9. I just want to send out a little alert for a select few people thinking about going on probiotics. The last couple of weeks I had been feeling like I was finally making some progress. I had a little more energy, my brain fog was a bit less thick, I wasn't having as many panic attacks, etc... Then for whatever reason, I decided to take a single dose of probiotics I had left in the fridge that I had stopped taking a month or two ago. I researched them before I bought them to get the absolute best. I think they were Ultimate Flora something or other. Idk, all I know is that they weren't cheap and had no fillers. Anyway, starting that night, it felt like whatever balance my body had been starting to achieve was completely disrupted. For the past 3 days or so now, I've barely had the energy to stand up, the brain fog is back full force, the constant feeling of panic returned, and it feels like everything in my gut shut down, like I'm not absorbing anything at all again, and I bloat up much easier. I'm back to square one. While it may be possible that I picked up a secondary bug or something, my intuition tells me that I threw off my natural balance by taking that stupid thing. Now I'm kind of suspecting I might have a problem with SIBO or something along those lines in addition to celiac. I can't say for sure, but I have an upper endoscopy scheduled in 2 weeks that hopefully will tell me something. tl;dr: If you seem to be doing alright without probiotics, it may not be advisable to take them. At the very least, you should have tests done to make sure you don't have something like SIBO first before dumping even more bacteria into your gut. That's not to say they don't work or haven't helped in countless cases, but just get tested first for other things and realize they're not for everyone.
  10. Have Celiac...DON'T CARE!!

    Haha maybe. Between the cars, the heavy metal you mentioned, and that in Texas you're not limited to 5 round bolt action rifles and pump shotguns. I do love it here in NY but it kinda sucks for that. I'll quit now before I derail the topic.
  11. Have Celiac...DON'T CARE!!

    Here's a list of things that might cause a false positive biopsy for celiac that aren't celiac. http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/ INCOMING RANT, but I hope it'll help in a way, if for no other reason than to validate your feelings. I can fully understand the frustration. At this stage in the game I seem to react to nearly everything too. My diet has been reduced basically to chicken, beef, gluten free bacon, and sweet potatoes. I've been told to cut this that and the other thing, to take this that and the other thing, do this, don't do this, contradictory information and quite honestly, an overload of information that my broken, pea soup fogged brain can't process anyway. It can also be frustrating when you clearly state something just to have 3 more people ask about it again. It's something I quickly picked up on here. I love all you guys and thank you all for trying to help, but you really need to read better... Seriously. I agree with you on the spare no expense thing. I've been sick for 8 months, gluten free for almost 4, can't work because of this BS and have already burned through half of the $15k in savings I had built up over the years. I spend at least 5x more on food than I did before this. I can't get disability yet though because I don't have enough tests and doctors and psychologists to say I can't work yet, but every time I go to schedule something with them I get the, "Yeah we can get you in 3 months form now", just for me to come in and have an "initial consultation" and be told to come back in 3 months. What a #^#$% joke. All I do is sleep and eat and I'm still 100 lbs. I'm 29 and have to live with and be taken care of by my mom, who really doesn't need the added burden, and not only do I feel horrible about it, but it also feels degrading and dehumanizing, like I'm a little kid that needs his mommy again. This could have manifested any other way and I'd be fine, but no, I get the brain fog, the feeling like I'm in a dream, like nothing is real, I question reality constantly. It had to crop up in the way that plays on my biggest fear. Not only that but because I can't concentrate, I can barely drive and don't feel comfortable doing it, which was my only outlet I ever had for problems and frustration. I can't even play videogames most of the time anymore. I actually hate being awake, because at least in my dreams I'm able to do things other than lay here and rot away. It's the only way I can even distinguish dreams from reality now. If I'm doing something, I'm probably asleep. Quality of life is a big bold zero. I honestly consider taking a dose of 7.62x54R aspirin on a daily basis, and the only thing that keeps me from it is that I think I am starting to see SOME improvement, even if it's minute and I can't trust the better days to stick around before the derealization and panic attacks come swooping back in again. I really can't blame you for giving up. I want to give up every day. I don't care at this point if I get better or if I die, either is preferable to this in-between purgatory I've been banished to. Again, didn't mean to hijack your thread or anything, but like you said, logic can only take you so far. I've always been a very logic driven person myself, but when you're subjected to inescapable physical and especially mental torture, feelings happen unfortunately. At least now you know you're not alone in feeling the way you do about the whole thing. Sometimes more and more heaps of information are meaningless and you just need to have your feelings validated. I hope you figure it out and get a chance to live again, but hey, if you don't, here's hoping you can at least go out with a bang instead of a whimper.
  12. The daily roller coaster ride

    A quick google search tells me I'd have to be taking 40,000 - 50,000 IU a day for at least a couple months for that to happen. Between my multivitamin and sublingual D3 I'm getting about 5,500 IU a day and I don't get it from anywhere else, like the sun, since I can barely go outside. I've only added the 5,000 from the sublingual a couple weeks ago. I'm not too worried about it. It looks like us newbies just need more time to recover. Thanks again everyone. It's good to know that we're not alone.
  13. The daily roller coaster ride

    Thank you all for replying. It's good to know that it's not just me. It gives me (and hopefully the other noobs) some comfort to know that it's normal for the ups and downs to happen. I keep trying to tell myself to be patient with it but it's so hard to be able to look down the road further than the moment when you're in the middle of it. I forgot to mention, yeah, I have had a full vitamin, mineral, and general blood panel done and everything came back normal. Regardless I still supplement with a good (and expensive) multivitamin plus sublingual D3 and B12 every day, and naturally I scrutinize the labels on those and everything else for anything even non-gluten that sounds fishy, including the possibility of CC at the factory. I guess it will just take longer to stabilize.
  14. Alright, so I'm 3 months into being gluten free, And in terms of how I feel, the "best fit" line on the graph would be a very slow incline, which is good, but day to day, I would mark as all over the place. I don't understand. I pretty much do the same things every day, and eat the same things every day at around the same times, even in the same order. I cook all my own food and am super careful about CC. I even have my own pans, cutting boards, even my own sponge for washing my own aforementioned kitchen supplies. What I eat is very limited. I don't even do dairy, grains, or added sugar. (for now) Yesterday I actually felt okay. The brain fog was fairly thin, I felt more based in reality, rather than like I was in the matrix, on drugs, or in a dream. Today I'm back in the matrix again. I can't think, I have anxiety, I'm overly emotional, short fused, angry, and scared of my own shadow. This up and down for no apparent reason stuff seems to be the norm for me. Is this unheard of or somewhat common? It seems like how I feel is completely out of my control, and the disease just does whatever it wants. I know 3 months isn't that long in the usual recovery time frame, but I want to get off this ride. I just need to know if it's normal to be so up and down day to day during the recovery, or if I should give in to my assumed unfounded panic attacks and be worried. As a side note, I'd much rather have the typical gastro issues usually associated with celiac. Blowing chunks and crapping my pants constantly would be way easier for me to deal with than all the neurological problems mine manifested as. Ugh.
  15. The only reason I'm grain free is because they're all apparently to some extent inflammatory. The same goes for dairy. I remember feeling a little weirder right after eating some brown rice, but it was only a couple days after going gluten free so it might've been nothing, but I'm trying to avoid taking chances. I do know I cross react bad to corn, in particular it seems cornstarch. I tried a few of those Snyder's gluten-free mini pretzels last month and immediately felt like someone drilled a hole in my forehead and was pulling my brain out through it in a string. Checking the ingredients list they're FULL of cornstarch. I didn't have that reaction from a couple gluten-free vanilla wafer things that were made with milk, soy, and I believe rice. Idk, maybe I'm over sheltering myself, I mean most of the vitmains/suppliments I've tried have a little soy or rice or something in the capsules. I go by the phrase better safe than sorry. I hope someday I'll be alright to eat that stuff. I would love to have pizza, pancakes and ice cream (cones) in my life again, even if they are gluten-free alternatives. For now though, anything with grains in it sketches me out. I'm only 2 months in, so I know I have a long way to go. Ennis, I see you've been on the forum for a couple years so I'd assume you're well into this yourself. When you started gluten-free did you have any weird reactions to non-gluten things that you can eat now? EDIT: Just read your post a few topics down about food reintroduction. Ask a stupid question. lol.