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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 FREE email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About torimuse

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  • Birthday 06/25/1986

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  • Gender Female
  • Location Omaha, NE
  1. Old Chicago

    I'm very new to this, as my signature suggests. With my move and everything, I just wanted to get food. I was thankful that the manager came up and warned me, but I was irritated that there was absolutely nothing in the entire place that I could eat. Not even fresh veggies or anything. I knew they had veggies because of salads and the celery that comes with bbq wings, and I was just confounded with the severe level of CC. Well, that and the fact that I had to sit there and watch my friends eat when I was starving. That didn't help my mood at all. And, yes, the PF Changs in Omaha is good. But it was closed by the time I got all my stuff moved into the new apartment, and I had next to nothing in the way of food at home for that same reason. Note: This was about 11:00 at night. Almost everything was closed. Like I mentioned, it was a rant. Rants aren't always intelligent, but they're always fueled by emotion. It was a lot of things all at once, coupled with a desire to let you guys know that Old Chicago is a no-go, that didn't really come out the way I wanted it to.
  2. It's Official....i Am Crazy!

    I'm another person to suggest going on a stricter diet for a bit and see if that helps. 2 weeks after going gluten free, I discovered myself reacting still, and so I (very extremistly) cut out ANYTHING that might possibly be giving me a reaction. 2 weeks into the re-introduction period, and I'm SO glad I did. I found a hidden shellfish allergy that I hadn't noticed before. I've been eating shellfish without a problem for most of my life, but it was such a small reaction that I didn't notice it until all of my gluten symptoms were gone, too. It was hiding. I haven't tried soy or dairy yet, but those are the two major intolerances besides gluten that I see on here, so I'd try cutting them out. Stick to whole foods, ones that you absolutely know what they are, so that you can monitor just exactly what it is that's going into your mouth. Good luck. We're all rooting for you!
  3. Old Chicago

    So I moved to Omaha last Sunday, and my friends decided to take me out to Old Chicago, because they have steak and salad on the menu, and I LOVE steak. Anyways, we got there, and I started asking the waitress the litany of questions I have to ask, and it seemed like I'd be able to get a pretty good meal out of it. She goes back to the kitchen and out comes the manager. He then states that the entire kitchen is covered in flour due to making the pizza crusts, and he can't gurantee that anything is gluten-free. I wanted to scream. So I had to sit there and watch all my friends eat while I couldn't because the freaking store couldn't keep their flour off their freaking steak and salad. Rar! So...don't eat at Old Chicago.
  4. Want To Cry-So Frustrated!

    Just as everyone here has said. You're not a fraud. It's not all in your head. I had very similar feelings myself when I stumbled across this board. I went gluten free too soon, and my doctor wasn't able to test me, even if she wanted to. (which she didn't) I have since decided that my body is a better diagnoser than anyone could even try to be. If stopping gluten makes you better, that's the cure. Just make sure you know about all the side effects so that you're prepared when you go into withdrawl, or those secondary intolerances pop up. We've all been at the point you're at. Scared, not knowing why we feel sick, wondering if it's all a game of make believe. It's not. You're doing the right thing. Now the hard part is to stick with it.
  5. Omaha, Ne Anyone?

    I'll have to go check that forum out when I have time. Thanks. I'm so happy to be back in Omaha. I hope to meet you when you get back, then.
  6. Have you tried taking yourself off of nightshades, beans, or corn? Some people on here have problems with those. WARNING: Corn is in EVERYTHING. Baking soda, Iodized salt, etc. Someone here posted a link to a corn allergy site (I can't remember where that was) that can help find where corn is hiding.
  7. On Saturday I will be completely gluten free (with 2 cases of accidental glutening) for 3 full weeks. I was self-diagnosed after I graduated college this year, but stopped by to see some of my old professors who had to work over the summer. All of the people I saw remarked about how healthy I looked, even to my Band Director noting that my HAIR of all things looked healthier. Sometimes it's hard to see just how much change happens until you run into people you haven't seen in a long time. I'm really glad I did.
  8. Congrats on feeling better, Marz! I'm glad you're finding out what you can and can't eat.
  9. This happened to me. I was gluten free for 2 weeks, was on the verge of feeling better, then BAM, back to what it was before. Granted, I also reacted to milk just after symptoms started coming back. Maybe you have a secondary intolerance for milk or soy? Everyone's different, but I went and stuck it out, chalking it up to Gluten Withdrawal and some other intolerance. Your body can become addicted to gluten, so when it gets removed, you just don't feel well for a while. It takes people different amounts of time to get over it, but I'm about a week in from that and I feel like I'm getting better again. Good luck to you on feeling better soon!
  10. Hey, that sounds like me! I used to drink a TON of milk, but two weeks after going gluten free, I reacted to milk within 5 minutes of drinking some. I went to the extremes and cut EVERYTHING out of my diet that might have any chance whatsoever of giving me a reaction, and I'm going to start testing them here in a couple weeks. I can be an extremist at times, though. Milk and soy seem to be the two biggest secondary intolerances on this board, so I'd suggest cutting them out for 2-4 weeks, then try soy for a week to see if you react. If you don't react, great, try milk the next week. If you do react, stop eating it and move on to milk after you feel better. It's better knowing than not knowing. You'll usually get a bigger reaction after all previous traces of the substance have left your body.
  11. It does sound like a gluten intolerance. The test probably showed up negative because you'd cut gluten out for so long before testing. I don't know much about any home tests, but I know the hospital tests that draw your blood require you to be on a high-gluten diet for at least 4-6 weeks before the results are anywhere near accurate. That being said, I think you've already found your answer. You cut out wheat, you felt better. You added wheat back, you felt crappy. Try cutting out rye and/or barley and seeing if that helps, too. Then try adding them back in after a week or two and seeing if you feel crappy again. Welcome to the self-diagnosed club.
  12. I'm going to preface this by saying I am by no means an expert on anything. However, that being said, yes. Do go get yourself tested. I caught this after only a year and a half, but the fatigue was already devastating. I almost didn't graduate college because I started sleeping through class. Now I can't go to sleep. (just kidding, but it sure feels that way after sleeping 16 hours a day) If you don't want to wait for another doctor, there is a test for (not Celiac's) but gluten intolerance in general at Enterolab. It's a stool sample test. You can find it on google. I've heard some mixed results about this test, so go with your gut feeling. (pun completely not intended, but amusing nonetheless) If you're going to get tested, keep eating gluten. I can't stress this enough. You need to be eating the equivalent of 3-4 bread slices a day (or so I've heard) for the tests to have any chance of being accurate. After you get tested (blood test *and* biopsy) would probably be the best time for you to go completely off gluten. Don't even bother to wait for the results. Your headaches may be persistent because you're still ingesting small amounts of gluten. I know Skylark thought for a while that it was just wheat that was bugging her until she didn't have rye for a while and little things she didn't even realize were connected cleared up. Good luck with everything, and keep us posted! This board is very supportive, and we're here to help you with anything you need.
  13. ME!!! Granted, I'm still new to all of this myself. I haven't even been gluten free for a month yet, and I'm feeling LOADS better. Hell, me staying up 'till 3am and KNOWING that I can wake up tomorrow in the late morning is enough for me to stay gluten-free, not to mention all of the intestinal problems that have GREATLY lessened. My doctor refused to test me at all, saying that people who are constipated have IBS, not Celiacs, even when I told her that going off of gluten made me feel better, and that the instant I went back on it I was sick again. Now I get horrible reactions from cross contamination, so I know without a doubt what the culprit was. I don't know about your UK Coeliac Society, but this forum has been all the support group I've needed. They are amazing people who have helped me out with so much in the small time I've been here. If it pertains to any food, type of food, food allergy, diet, etc, *someone* here will know about it. Oh, watch out for gluten withdrawal and problems with dairy and soy (or anything else for that matter). I'm going through all of that right now, but I'm already showing improvement, so I think the worst is behind me. It gets better, I promise.
  14. ::hugs mushroom:: Thanks for all your information. Now that I know that, I'll probably end up separating green beans and peas from the others if I end up with a reaction, just to be sure. I don't *think* I have a lectin intolerance, but it's one of those, "You never know until you try," kind of deals. I *did* react to pork and beans, but they *did* have natural flavoring in them. And now all the intolerances are seeming to hit at once. I take gluten out, I react to milk. I take milk out, who knows what I'll react to next. Easier to take them all out now and get it over and done with. And you're exactly right. Two months of torture is nothing compared to the sickness I won't get for knowing now instead of finding it later. I'm still very young at 24. I can adjust and live a great majority of my life free from feeling sick. Part of me wishes you found it early, too, but the other part of me is grateful for your experience because now you can help not only me, but anyone else who might suspect lectins. (Psst! Skylark! That last part goes to you too, with all the mental problems that seem to have paralleled mine.) All you guys on this forum are freaking amazing.
  15. Yes, welcome to the misfits club. Most of us had doctors that refused to test us at one point or another, so props to your doc for testing you!! You're definitely not crazy. I never wanted this. Nor did any single person on this forum. Far as I can tell, though, we're every single one of us happier knowing what it is that causes us to be sick. We like to know, so we can fix it, but we hate being sick in the first place. I know I can't count how many times I've gone to the doctor for this or that, praying it's [insert big condition here] because I'm sick of feeling sick and I want to know what it is so that I can make it go away. Now I know what all of them was caused by. My suggestion is that once you get the biopsy done, don't even wait for the results. Go gluten free and see if that makes a difference. The elimination diet is the ultimate test. If you feel bad after eating it, it's bad for you. Don't eat it. I'm also one of those people who haven't had symptoms for most of their lives. I'm 99.99% sure that my symptoms started from an infection I had a year and a half ago. I'm lucky, I caught it early, and on my own as well. Very few people on here can say that. Sounds like you're catching it early too, and with your doctor's help at that. Good. You won't have all the other issues that come with prolonged damage to your body. You get to be lucky with me.