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About Coconutkris

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  1. omg this happened to me last night! I got the most intense glutening symptoms I've had in years and could not figure out the cause as I hadn't eaten anything questionable. But last night I tried my friend's cbd vape pen which was something I never had before. It was flavored. I'm thinking that was what caused it!
  2. I just feel like people come on here for support, not to be made to feel like they are complete idiots who know nothing about how to manage their own health, esp. from a moderator. I have ACCIDENTALLY eaten things containing non-gluten-free soy sauce about twice. I eat out regularly but only at organic restaurants with a plethora of gluten-free options and specified gluten-free menus (I'm in SF, they are everywhere). I eat from the hot bar at a natural foods store but only items like steamed broccoli and sweet potatoes where the ingredients are clearly stated. I went to these lengths prior to knowing about Celiac so I think I am pretty responsible and well-informed when it comes to my health. Now that it is safe to say I have Celiac I have some questions and am seeking support. My questions are what does everyone here do- do you cook only in your own kitchen or do you ever eat out? Do you feel like you get a reaction just from touching flour? From all I have read you really need to be in a bubble and be crazy careful and I am MORE than willing to jump on the bandwagon and become even more of a food-nazi than I already am! I just want to know what everyone else is doing, how everyone else is dealing, and get some support- food sensitivities are not new to me, auto-immune diseases however are. I count myself lucky that I've been in tune with my body enough to have cut out gluten years ago, and that I've been able to finally discover what is going on with my body so I can do something about it. So yes, I am reading all the forums on here. And fyi, I DO think I need to cut those things out (thanks for assuming I didn't) I just wanted to know what everyone else thinks, do they freak out around bread crumbs and when they see flour on the conveyor belt next to their veggies, etc! Not here to start an argument about how 'right' I am in all this or to be told that I am wrong- here for SUPPORT!!!!!!!!!!!!!!!!!!!
  3. I should have clarified (edited now above)- I've had huge issues with wheat in the past when I was eating it- all the classical signs of gluten-intolerance. So I avoided it fairly strictly aside from possible cc and soy sauce on occasion. When I found out practically everyone on my dad's side has Celiac Disease (I never knew this as we don't talk) I decided to get tested- I didn't think my system could handle consuming gluten so I only did the genetic testing- my doctor said that with my list of symptoms and family history that would be all that was needed. Ironically, the day before I got the results of my genetic test I ordered something off a gluten-free menu and they made it using a gluten crust- halfway into eating it I realized. I immediately was ill (and still am) I told my doctor that the day that he gave me my results and he said there's no doubt in his mind that I have Celiac... soo....no, I haven't been running around consuming gluten these last five years though I'm sure I've had quite a bit of cc and that has been enough to keep me feeling less than well... If you had positive blood antibodies for Celiac, after 5 years you thought were gluten free, I guess you now know you weren't very gluten-free. So you will want to really tighten up your diet. Read the newbie thread to get started. http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/page-2#entry896943
  4. Hi Anna, I'm extremely sensitive too, but I just think they were trying to explain that eating out is risky, regardless of what the server does... I just was recently diagnosed with Celiac, though I've been wheat free for years, and am dealing with this issue too. I have eaten out almost daily for the last 4 years because I am always on the go... I live in a pretty upscale area with lots of health-conscious people and organic healthy restaurants but even at these places people give me looks when I ask- I feel like most people just do not understand what Celiac Disease is- it isn't the same as someone with a sensitivity- one crumb and you could be screwed! I am trying to sort out what I am going to do for food/eating...it seems like the only safe thing is to make all your food in your own safe gluten free kitchen. Getting a smoothie or a juice seems like it is likely safe...but anything else worries me. I recently got lunch from a place that has a gluten-free menu. I was very clear with the server. Well- a few bites into my food and I realize it isn't the typical gluten-free crust I get when I eat at this place...I call back the server- yep, they made a mistake and I just was glutened..lesson, it isn't even safe to eat at a place that has a specified gluten-free menu! Another less from another restaurant- they have a separate gluten-free menu with things like gluten free pasta and gluten-free pizza. I ask, are your gluten-free pizzas cooked on the same surface as the wheat ones? They went to find out and the answer was yes. So, that pizza is NOT gluten-free, it is wheat-free and there is a BIG difference. Sigh. Such a bummer. Being social is seeming incredibly tricky...people just don't get that you can't eat anything and everything like they can. People think it is a choice, or you are being picky....ugh...hello, my life and well-being are determined by every meal! I don't have much advice, but you are definitely not alone in this whole eating-out dilemma.
  5. I self-diagnosed myself gluten-sensitive about 5 years ago. I had horrible symptoms (bloating, nausea, gas, fatigue, migraines etc) and did a ton of research before figuring out it had to be wheat- sure enough, after cutting it out I got better. I never considered Celiac Disease. I just assumed I was extremely sensitive to gluten (and who isn't these days, wheat is so modified and terrible!) and actively avoided it. So, while I avoided eating things like bread and pasta, I would occasionally eat soy sauce, or have oats, buy from the bulk bin and I have eaten out almost daily as I travel, am busy, and live in studio where cooking is a pain. I recently discovered that my entire family on my dad's side has Celiac disease. I was having some symptoms and so I immediately told my doctor and was tested. The results were positive for carrying the gene (I only did genetic testing since with my symptoms and family history the doctor thought it would be enough to give a pretty accurate diagnosis- I didn't think I could handle eating the gluten required for the other tests). I know the diagnosis isn't 100% accurate with only the genetic testing, but I accidentally ate gluten a week ago (was an item off a gluten free menu that they did not make correctly and they used wheat crust) and I was so sick I thought I might die (that's the most wheat I've consumed in years). So- symptoms, genetic test, and the fact that everyone on my dad's side has it seems to be enough for me.... should I eat gluten and get the other tests? I don't feel that I need to but I suppose maybe some people here will have thoughts on that... I've done a lot of research in the last week a on living with Celiac Disease and it seems that you should never eat out, never eat from the to-go section (Whole Foods hot bar etc), never eat any food that was produced in a facility that also processes wheat, never buy from the bulk section etc... I do not believe in eating processed foods- so pretty much the entire gluten-free section is out for me. (I find I react even to gluten-free oats and corn as well- cross-reactors) I'm thinking I need to cook all of my meals from scratch in a gluten-free environment- is this what you all do? I spend almost all day in someone else's house and the kitchen is filled with gluten products-there are crumbs everywhere and the kids are always baking (which seems to make me ill, flour in the air?) I also feel ill when I have to cook pasta for the kids or make them sandwiches and touch the bread..I know this is not in my head as I was experiencing this prior to my diagnosis (maybe I have a topical wheat allergy as well). I'm now frantically washing my hands (because what if I touch my mouth etc!) I'm afraid to even heat up my own food in their pots or oven or cut anything for myself on their cutting boards... Today I was buying veggies at the store for soup and the woman behind me in line plopped down a large bag of flour on the conveyor belt and some flour misted out and now I'm scared to eat my vegetables!!! Arghhh! I find myself not eating because I'm scared to...I seem to react to nearly all the gluten-cross reactors as well so dairy and eggs are out and nuts, grains, beans as well for the most part....sigh. I just feel like at this rate I am going to lose every bit of weight and muscle on me and I'm already underweight. Sorry this is all over the place...to narrow it down, a few questions... -What do you do on road trips, or long days where you really don't have the option to carefully prepare your own meals? Do you rely on certified gluten free packaged snacks in order to have something 'safe' to eat? -Are there any go-to snacks that are easily portable and healthy that any of you can recommend? -what do you do when it comes to eating out? -how careful and strict are you about avoiding any possible source of gluten contamination? -do you ever feel terrified about food being contaminated? (apparently even gluten-free food likely has some level of gluten) -how do you deal with people dismissing the seriousness of your disease as if it is a choice or an excuse not to eat!??? (people think I'm anorexic because my diet is so limited and I am thin from not absorbing nutrients- I DO eat -lots of fats like coconut oil and pastured meats, but I just don't eat 'normal' food and being social these days is next to impossible...) I just feel like nothing is safe and the entire world is filled with gluten!!!!
  6. I can't comment on the pregnancy part of the equation but if you are experiencing symptoms again and are eating more dairy and eggs than you usually do it could be due to the fact that those are both gluten-cross reactors. Essentially the proteins in them are similar to the gluten protein and your body may be recognizing them as such....I'd suggest doing a quick google search of gluten cross-reactors..I know for me, as long as I am still eating those foods I am still experiencing symptoms..
  7. Hi I was a vegetarian/vegan for 12 years. I self-diagnosed myself gluten-sensitive about 5 years ago due to extreme symptoms and tons of research into what could be causing them. I never thought it could be Celiac until about a month ago when I discovered my entire family on my dad's side has it- I just was tested and am positive. Anyways- I was an extreme PETA activist, and preached the China Study everywhere I went (believing the health benefits of vegetarianism). If you had asked me ten years ago if I would ever eat meat again I would have told you I would rather die first. Well, that has completely changed after becoming so ill that I pretty much felt like I WAS dying. I cannot digest grains (white rice seems to be okay) or legumes, beans, most nuts and dairy and seem to react to eggs so I had to add meat back into my diet. It was a heart-wrenching decision and I still work on the ethical aspects of it but I have experienced SIGNIFICANT improvement in my health after adding meat back in. I make sure to buy grass-fed, pastured, organic, etc. The first time I ate meat again it was grass-fed ground beef (and I said a little prayer and cried before eating it). I thought my digestive system would freak out after going 12 years without it (you read how you can no longer digest it etc) but minutes after taking the first bite I had a rush of energy and felt better than I had in years...my body sort of freaked out and wanted to eat 80lbs of it....I had no digestive issues whatsoever. In fact, meat seems to be one of the only things I can safely eat (other than the emotional turmoil part of it). I suggest looking into the Paleo diet and Weston A Price - I've added lots of saturated fats such as red palm oil (orangutan safe) and coconut oil into my diet. I eat mostly meat, veggies, sweet potatoes and some fruits. I feel worlds better. I know it is a hard decision to make, but trust me there is a lot to learn about the health benefits of meat that you won't find in any vegetarian literature. Also, the change of meat being cross-contaminated is very low whereas even certified gluten free products still can have trace amounts which for some with Celiac is enough to cause damage. All I have to go on is how I feel and what my body tells me. I would suggest researching the health benefits of traditional diets and grass-fed meats and trying to eat some....Listen to your body and see what it says.... also, a side-note: If you want to limit the amount of meat you consume but still get much needed nutrients grass-fed beef liver is amazing for that..You only need to eat a tiny bit once in awhile and you'll get loads of lasting nutrition... good luck!!!
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