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EmiPark210

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  • Victoria1234

    Victoria1234

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  1. I've had an ADHD diagnosis since I was 7 and I had the same hope that once the brain fog cleared up that I could live without my meds anymore. My celiac symptoms began when I started high school and I'm now a college senior. Unfortunately, I'm going through reevaluation because I'm still struggling in school and inter-personally with ADHD symptoms. That being said, there are a lot of other neurological issues that could be contributing. Our brains use the food we eat as precursors for the neurotransmitters in our brain, so if something is causing issues in that way then a change in diet could help. But that's not guaranteed. There's so much we don't understand about all these processes and every kid is different.

    It has really helped me to have an outlet for all this frustration and also to be informed about what is going on and what medication changes are being made, even when I was really young. Medical tests and procedures can be really scary for children especially if they feel like they're not accepted as being who they are even when everyone around them is trying to help. Just from having been on the other end of this situation, I strongly recommend keeping your son in the loop and in the decision making process. It helps treatments work a lot more effectively because they won't be refused as vehemently and lets the child feel like they're also involved and in control of themselves and their lives. 

  2. I got glutened this weekend. I went home for Thanksgiving, and while my parents are amazingly supportive and helpful, something still slipped through. I didn't recognize that it was gluten until the gut sick started yesterday. I thought I was just tired/dehydrated/stressed and all that. I remember from the last couple times I got traces or those couple times I ate something with wheat (oops) it was all over in 3-4 days. But its been 5 and I'm still having trouble eating because all food and food smells are making me nauseous and my gut is still a balloon. This, of course, is not helpful to recovering back to normal but I was wondering if anyone had any suggestions. 

     

    This has also been the longest stretch I've gone without any CC issues since I had my endoscopy in April so is it possible my reaction is just getting worse because its been so long?

  3. So I was eating some lovely soy chocolate pudding that says "gluten free" on it in 6 languages and in 3 different places, and then I looked at the ingredients and it listed "wheat syrup" and "wheat starch" in the ingredients. And before we get on the "saying gluten free doesn't mean it" rants, I'm in Austria which has very very strict labeling laws. 

     

    Are these things safe? I'm so confused....

  4. I did three weeks gluten free before doing the challenge for another three weeks and got a positive. But I also had violent reactions when I got diagnosed and my GI said he was almost confident calling the endoscopy positive on sight alone because I had such widespread, visual damage. So it really depends. 

     

    The recommended time for an endo is 3 weeks on gluten. My guess (keyword: guess) is that since you've been off for 3 months that should be sufficient, but talk to your doctor and keep doing your own research. Maybe someone here has a more medically based answer. 

  5. There is a easy bread recipe you can make, if you're up for it, that is totally egg free. Google "almost no-knead bread." The most basic ones are flour, water, salt, and yeast. 

    You could also try to see if there is a vegan bakery near by or anything like that because they would be egg free. But other than that, pastas work really well too. And then there's soy sauce too. Luckily for you, there are so many things with gluten in them that there have to be some that are also egg free. Go find the list of gluten containing ingredients/foods on this site and just highlight the ones that would work. 

     

    Good luck with the challenge!

  6. Speaking as someone who had to make sure I could get accommodated for school endeavors, I would say, if eating gluten for long enough to get the biopsy is not absolutely debilitating, do it. A lot of places like to have all the possible tests done to have accommodations. I'm currently studying abroad and they asked for all my diagnosis papers to accommodate me under ADA. And here in Austria, they won't give people their tax breaks and health benefits for Celiac without a biopsy. 

     

    I had a super strong positive on my blood test, but I'm not in control of my food 100% of the time because I am a college student. I was just terrified that somewhere down the line, something wouldn't be changed or accommodated because I was missing the endoscopy. I'm also a huge worry-wart so take that with a grain of salt. The test is just so much easier to do when gluten is still around than years after being gluten free. 

  7. I have a really bad coping mechanism: I drink a glass or two of wine. Most of my initial symptoms are more psychological in nature (dizziness, tingling limbs, disorientation, etc.) so to keep myself from over-thinking everything that's happening and making it worse by becoming psychosomatically ill (illness without physical causes, based in psychology), I kind of induce the same symptoms through a little bit of alcohol. I also get rid of or away from whatever the culprit was.

     

    For the rest of the time until my body decides it's done with the gluten and I need a bathroom ASAP, I try to do things to help alleviate the pain from bloating and keep my anti-spasms on me in case of a colon-spasm attack, which sometimes happens. Also, crappy movies and warm blankets help. It's really about waiting out the storm. 

  8. I need to talk to my gastro when I get back stateside about a couple of things, but dairy is definitely out. I had a couple days of just soy and rice milk which were great for the symptoms I thought were for dairy... but I just finished the ice cream I bought earlier in the month and I'm like a balloon. I might go get it checked if it's lactose or casein but this one is going to be the hardest stateside. No more Amy's :(

     

    I have another question as well: Could a high amount of unprocessed foods in stool be a sign of intolerance issues, or just part of your body healing? I'm still new to all this and it's hard to talk to doctors while out of the country. 

  9. I'm starting to question if I have other intolerances, temporary or otherwise, in addition to Celiac. But I don't quite know how to figure it out besides elimination which is proving to be very difficult. I think I may be sensitive or intolerant to corn and dairy.

     

    For corn, I know in the past I've gotten really bad colon spasms when I eat a corn based pasta, but didn't ever seem to react to eating corn on the cob, popcorn, or anything like that. I did seem to react to Planter's peanuts which use corn starch but that was back when I also had very violent reactions to any CC from gluten right after my diagnosis. I'm currently studying abroad in Vienna where it seems that everything that is gluten free is corn based. I've been eating cornflakes in the morning (whereas at home I eat rice chex) and sandwiches on Schaer bread for lunch. I haven't had a full blown spasm attack yet, but my colon is telling me it's not happy. Sorry if this is a bit too much, but my stool has become very different since I got here. It's more in multiple pieces and round but still easy to pass though the need is urgent when it arises... if that makes sense. I've been here for four weeks so there has definitely been enough time for my diet to be affecting everything.

     

    As to dairy, I get really bloated when I have a good amount of dairy but notice everything is fine when I have a soy based alternative. I've switched to soy milk for my cereal and a lactose-free cheese for my sandwiches and it seems to have helped. I could probably get a lactose test when I get home to the states in a couple weeks but I've been considering going dairy free for a while. I just don't know how I would do it at home. The soy here in Austria is non-GMO and while I don't have an issue with modifications themselves, I do have an issue with the business practices behind them so I don't know what I'd use as a replacement  state-side.

     

    I'm still pretty new to all this so I don't quite know how to handle these questions and self-diagnosis of other things going on. Any input is really helpful. Thanks 

  10. The same thing happened to me when I first got diagnosed. It's super annoying, but a good way to identify how you are coping with it 'below the surface.' Mine were about eating pretzels, pizza, cookies, and ice cream cones.

  11. Check out the blog Gluten Free Girl and the Chef. Shauna, the author, has an AMAZING upbeat attitude about life with Celiac. Whenever I hit a rough spot, I go read her blog. It's also full of good recipes. 

     

    As for good recovery stories... I'm doing pretty well with mine. I started this whole process in February where I had just accepted I was going to be sick and never fully grow out of my ADD. Then I finally got tested. Ever since I started going gluten free after my endoscopy, I am such a happier person. I can remember things more easily, my anxiety and insecurity has almost disappeared, I don't have to use my ADD meds any more and I feel great. 

     

    One of my favorite things about Celiac is that we don't need medication or anything like that. We can heal ourselves just by eating all these amazing foods that most people are never exposed to. My best advice for helping this process be more "rainbows and butterflies" is to keep an open mind and positive attitude about what you're going through. And allow yourself to feel everything. By that I mean don't try to shut down the sadness or frustration when you can't eat something you used to love. It helps it not boil up into resentment. I also tell people not to pity me when they find out that I can't eat XYZ. Finding out I have Celiac changed my life in a really positive way. 

     

    Hope that helps and makes sense :P

  12. Today my roommate and I went to the grocery store after a couple hours of walking around a museum so we were both shopping hungry. Everything I picked up had the coveted Austrian "gluteinfrei" symbol on it, until I got to the chips. I found one brand that based off the ingredients seemed safe, but then I found "Wild Tex Chili Chips" that looked delicious. A quick look over the ingredients yielded no warnings, the allergy listings didn't say anything about wheat or gluten, so I bought them. It wasn't until I was eating them in the elevator in my apartment building that I noticed the "wheat flour" in the English translation of the ingredients. I forgot that the allergin listings here don't include things that you can easily read in the ingredients, it's just traces that are listed. In my hungry state I didn't read the ingredients multiple times over, in every language I understand, until it was too late. I'm almost convinced that I shouldn't buy anything without that wonderful, government regulated, less than 20ppm label. Has this ever happened to anyone else?

     

    Also, my short term coping method is a glass or two of wine because my initial reaction looks more like intoxication than anything else, and I'm really scared of mentally causing my reaction to become worse. So I have a drink, then I can't tell if it's the alcohol or the gluten that's making my head woosy and the world spin, and since I can't identify the source of my off-ness I feel like I won't accidentally psychologically make a mountain out of a mole-hill. But at the same time, I feel like this isn't a good coping mechanism. I never knowingly eat something with gluten and avoid CC at all costs, but when it does happen and I find out soon after, I get rid of the gluten food and triple check everything else in my kitchen.  Any other ideas on not psyching myself out?

  13. Make sure you've replaced all the things that need to be replaced in your kitchen. For the most part, anything that is metal (not cast iron), silicon, or ceramic should be safe unless it has lots of cracks, scratches, or hard to clean nooks. Anything that is wood, natural bristles (basters), scratched plastic, or seasoned (cast iron, some cookie sheets, baking tins etc) needs to be replaced. These are easy places to get continually cross contaminated. 

     

    Also check any medications that you take. It seems to be rare but they can have wheat starch as a binder. 

     

    You might just still be clearing things out of your system, you might have withdrawal symptoms (yes that's a thing), or you might be showing signs of other intolerances that can be temporary until you heal or just new adaptations. Keep us updated on how you're feeling!

     

    PS Also, for visiting places, aluminum foil will be your best friend. You can create a "safe space" pretty much anywhere with that stuff. 

  14. I know the norm is that the longer you're off gluten, the worse your reaction is, but for me that has been the opposite. My reactions at the beginning of being gluten free were violent and debilitating. But as I accidentally found out a couple weeks ago, I don't react that badly anymore. I will never eat gluten again because I don't react strongly to small amounts, but maybe people who think they "out grew" it or "recovered" just became asymptomatic but they're still causing damage. I don't know the research as well as others, it's just a theory.

  15. I'm currently studying abroad in Vienna and as much as the grocery stores have, I really wish I could just eat the street food and try the local cuisine. It seems to not even be an option here. The one person at my study abroad center who lives here and is gluten-intolerant just pretty much said "don't eat out." I have my "celiac travel" cards but they don't explain CC, which definitely happened last weekend. Luckily I have a minor reaction to CC so I wasn't bed ridden like if i had eaten one of those beautiful fresh out of the oven rolls that were on the table. But I'm hanging out with a group of college students who don't want to spend all their shopping money on food, so everyone usually goes to a street stand or small shop for food before we go see shows, concerts, etc. And then I take out my sad little sandwich on Schaer bread. I haven't really had time to cook because we're out late every night after classes experiencing the culture and all that Vienna has to offer and now I have time to cook but since it's Corpus Christi day, the entire city, except for bakeries and some cafes and McDonald's, is closed. I'm not eating enough and it's been cold so I just want a hot meal and yes I'm complaining but I'm so lost and hungry. Last night, by the time we found a non-asthma-inducing bar and got drinks, it had been almost 12 hours from when I ate last, because I'm too scared to order anything at restaurants and all I had brought was a sandwich for lunch before 3 hours of class, 2 hours of standing in line for ballet tickets and 3 hours of standing at the ballet. This is a normal day for me in Vienna, but not at home. I'm so new to this that I'm just sitting here thinking, "Why the hell did I think this was a good idea?"

  16. I'm still pretty new to this, I haven't been gluten free for even a month yet. But I'm starting to wonder if I'm forming other intolerances like so many other people do. 

     

    I'm thinking it's dairy because I feel off only after that. I usually have 1/4 cup - 1/2 cup of greek yogurt for a snack or dessert (with honey, vanilla, and dried blueberries) but somewhat soonish afterwards (maybe TMI but necessary), I sometimes get burps that are kind of acidic and sometimes taste like vomit. I haven't actually thrown up yet, but it seems to be the next step in the progression. 

     

    I tried a week without dairy back in 2010 when I finally started trying to figure out my gut issues, but it didn't seem to help. Of course, I was still eating gluten so I don't know if anything besides gluten free would have made a difference. I also haven't had any dairy issues before going gluten free. I know I react to highly processed corn (ie. corn pasta and high levels of corn starch) and caffeine with colon spasms, and get nauseous when I eat really rich or high in fat foods.  

     

    Thanks in advance for any advice/thoughts!

  17. Starting on Thursday, I'm going to be staying with my cousin, aunt and uncle in Vegas for about a week. My cousin is graduating from college so there are going to be about 30 people in the house during the day and for a lot of the meals, especially during the weekend. I'm bringing foil, soy sauce, cutting boards, and pastas to get me through till my parents will be there on Saturday and we can go to the grocery store. They're being really great about listening to what needs to happen including finding gluten free cupcakes for the graduation celebration and notifying the restaurant (they already have a gluten-free menu) and asking lots of questions. And I'm already planning on spending a lot of time in the kitchen so I know exactly what's safe and what's not.

     

    Is there anything I'm missing?

  18. I get them when I've had too much sugar coupled with stress. Everyone has their own causes but if you've still been getting them without gluten then it doesn't seem like it's a CC sign, though it's ways worth checking things every once and a while.

  19. I had the eating gluten nightmare for the third night in a row. I'm really scared that I've missed a source of gluten and am still eating it. Or that my dish washing system with my roommate isn't working somehow and I'm getting cross contamination.

    I'm at a naturally stressful part of the year and I wonder if all of that is being kinda projected on my gluten issues. I got stressed enough on Tuesday to where I had to take an anti-spasm pill to quiet my colon before my oral test in Russian and I thought that would be one of the issues that would be fixed by going gluten free. I haven't tried cutting out other foods (and I know it could help) but I've already cut out so much else leading up to the diagnosis. I'm a bit at a loss of what to do.

  20. It's hard when you have to ask for exceptions to be okay with not having that full spectrum. I'm studying abroad this summer and had to ask for housing exceptions so that I can continue to stay healthy while I'm in Austria. This required me to have a full biopsy test for medical evidence. Luckily, I found out the documentation requirements while I was eating gluten again for my biopsy, which came back positive, thank god. But even if it had come back negative I would have gone off gluten forever. So for me, it was worth it. Yes, my grades took a major hit and I only vaguely remember three weeks of the past month, but there is nothing left to question, which feels so safe to me.

     

    For those of us who aren't in control of our food (ie. students of all levels), those three extra weeks of hell are the only way to make sure that there never has to be any harm again. But oh how I wish we all had that level of choice. 

  21. I noticed I got really insecure when I continually eat gluten, to the level where I can now understand why I stayed in an emotionally abusive relationship for 3 years. Celiac's can mess with more than just your gut. Well, the messing with your gut can mess with your mind. The types of losses in courage and determination can be associated with depression, which (according to this article: Open Original Shared Link) is over 4 times more likely for people with celiac disease. This is because over 90% of our serotonin is produced by the gut (Open Original Shared Link). If you listen to or read any anti-depressant medication advertisement, they mention dopamine and serotonin as being key to "fixing" depression. But if your gut is damaged, you can't absorb nutrients or produce serotonin --> depressive symptoms. The good thing is, that if your loss of determination is caused by a nutrient/hormone imbalance from celiac's then once your body heals on the gluten free diet, you should go back to what you thought of as normal. I've found it really helpful to have people to talk to about all of the issues as well. 

     

    (Full disclosure, I do study psychology and have a personal interest in the biological basis for pathologies, but I haven't done any personal research on these topics. I've cited my sources so feel free to take a look and form your own opinions)

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