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tspiggy last won the day on October 26 2017

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About tspiggy

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  1. This particular line really stood out. This is your depression talking. When you get your symptoms sorted out you'll begin to feel better and learn how to live with your celiac disease. I'm not promising that it will be easy...it took about six months gluten-free for all of my physical symptoms to resolve but at least two years for the raging anxiety and crippling depression to abate. Even now, five years post-dx, I still suffer from bouts of anxiety and depression for about a week if I'm accidentally glutened (which thankfully happens very infrequently). You're not going to live a particularly happy life if you feel like crap all the time from eating gluten. I was diagnosed five years ago, and remembering how awful I felt in the 18 months before dx has kept me from cheating. I feel healthier and happier now more than ever and never want to go back to those days again. You need more supportive friends. If they've stopped inviting you simply because of your dietary restrictions then they're not friends worth keeping, anyway. Focus on what you can eat rather than what you can't. There's no point in lamenting what is no longer, and there is plenty of good, healthy gluten-free food that you can enjoy without feeling deprived.
  2. I did the same and didn't find my very first one, either. Perhaps the site doesn't save posts older than 3 - 4 years.
  3. I lost 11 lbs before my dx five years ago and gained 20 lbs in less than a year after that. I can't seem to shake off the excess weight despite a healthy diet and exercise. But I'm still within my normal weight range (albeit on the high end) and I like my carbs a bit too much. :-) As long as you feel well and have no symptoms you're fine.
  4. tspiggy

    Glutened myself :(((

    Could possibly be a cross-reaction to the corn starch, but if you're not sensitive to corn it shouldn't be an issue. Your nausea may be from something else entirely, and it could be somatic...you're expecting a reaction and your body is kindly obliging. We tend to blame every little blip on celiac, which is natural, until we learn over time what is and isn't a gluten reaction. In the meantime, drink plenty of water and get some rest. If you experience brain fog like I do, try a little extra vitamin B-12.
  5. Hello, fellow celiacs! It's been a long time since I last prowled this forum, newly diagnosed, terrified and looking for answers that my doctor couldn't provide. A wise soul with the user name Irish Heart told me at the outset to not let the disease define nor confine me. In the five years since my dx on 10/11/12 I've taken her advice to heart. With the unwavering support of my husband, daughter, friends, GI doc and nutritionist, I've learned how to manage the disease while living an entirely normal life and want to assure the newcomers here that you can eventually do the same. At the time of diagnosis I had endured 18 months of hell. Insomnia, raging anxiety, balance issues, tingling extremities, crippling fatigue, upper abdominal pain. The weight loss was so rapid that I feared the worst. Four different doctors gave me four different misdagnoses. When I was finally diagnosed I was relieved to finally have a name for my condition. But I was still scared and faced the daunting task of making an immediate, life-changing dietary change. Celiacs can't simply ease into gluten-free. It took time, and a lot of trial and error, to finally get the gluten-free diet down to a science. Like many folks here, I made a lot of mistakes in the beginning. I cried a river on my first post-dx grocery shopping trip, spending far too much money on gluten-free food that tasted like cardboard. I lamented the loss of a “normal” life. Eating out seemed too intimidating and risky. I accidentally glutened myself a few times and spent sleepless nights worrying about the possible damage I'd done to myself. My wonderful nutritionist, whose brother is also celiac, patiently spent an hour with me reviewing what to look for on ingredient labels and suggested sticking to whole foods that are naturally gluten-free just to keep things simple at first. Once I got the hang of the gluten-free diet my body quickly responded. All of my physical symptoms resolved within six weeks (the anxiety, on the other hand, took two years to gradually subside). I gained back the weight (and then some, thanks to discovering Trader Joe's gluten-free mini cupcakes :-)). Today I practice yoga six days a week and do cardio and strength training on alternate days. I can easily modify any recipe. I no longer ask my husband or daughter if something they brought home is gluten-free; they know what to look for and I trust them to have checked it first. I take my own food to weddings and other social events, and everybody understands. I have a list of restaurants that I know are completely safe, and I've learned which brands and foods cause a rare cross-reaction. For example, I can't eat oatmeal, not even from dedicated gluten-free brands. The only salsa that doesn't cause a reaction is Amy's. Last summer we went to Ireland and the UK, where nearly every restaurant has a gluten-free menu and follows proper protocol to avoid cc. We discovered a wonderful restaurant in London named Niche, in which the entire menu is gluten-free and delicious. I loved picking off my husband and daughter's plates, secure in the knowledge that everything was safe. At 54 I feel strong, healthy and happy. I was lucky that my disease was caught before related complications set in or other AI diseases developed. I don't have follow up blood work and have not had any follow up endoscopies since the first one. Both my GI doc and nutritionist agree that as long as I have no deficiencies and feel well there's no need. I do continue to have an annual physical with thorough blood work that goes above and beyond the typical (10 vials), and everything has come back normal. Some members here may disagree with my approach, but it's worked for me for five years. Which leads me to: no two celiacs are the same. What works for me won't necessarily work for you, and vice-versa. If you're feeling well, congratulations. But please be understanding of those who continue to struggle with symptoms and/or are also battling additional health issues. What works for you likely won't work for them. If you're feeling poorly I'm truly sorry, but that doesn't give you the excuse to scare the hell out of people, especially newcomers looking for answers. One of my first posts five years ago asked if it was ok to occasionally cheat on the gluten-free diet (I've since learned that it's not, and have never cheated). Within an hour I was bombarded with sixteen semi-hysterical responses, mostly consisting of all caps, multiple exclamation points and “helpful” links to articles of dubious merit linking celiac to cancer. Instead of assurance those responses only terrified me more. The aforementioned Irish Heart provided one of the handful of reasonable responses that talked me down. We're all here to support each other, regardless of where we are in our gluten-free journey. So...to the newcomers, welcome. Have a look around, take what you need and discard what you don't. To the veterans, keep fighting the good fight and thanks for your help. May we all be happy, may we all be healthy and may we all be free from suffering. Namaste.
  6. I saved this list to Evernote on my laptop and can access it from my Evernote app on my phone. You can also save it to Pocket on your computer and access it from your phone through the Pocket app. Both Evernote and Pocket are free registrations (there is a paid version of both with more features but you don't really need them), and their corresponding Android/iOS apps are free as well.
  7. Diagnosed and gluten-free nearly two years, I'm feeling 100% better. I've got label reading, cooking, avoiding cc at home and eating out pretty much down to a science, and I take my own food to family gatherings or events like weddings (by all accounts I'm apparently not missing much at those events, lol). I never cheat, so the only times I've ever been glutened have been from eating out. It takes about 3 days for a reaction to kick in -- fatigue, crippling anxiety and brain fog -- and it takes on average a week to feel normal again. The tiredness is never enough to affect my daily functioning; I just take catnaps here and there when I can, and I go to bed earlier than usual. The anxiety is sometimes bad enough to affect my quality of life, and I finally realized I may have to resort to Xanax to get me over the hump until I feel better. But muddling through that brain fog...lordy, lordy. My concentration is shot, my short-term memory is ridiculous, my attention wanders frequently. When I talk to someone my voice sounds as if it's coming from a distance. There's a rational part that knows what's happening and that it will pass, but man, I hate feeling trapped inside my own head. Is there anything I can do to help clear it more quickly? I've tried drinking more water, getting more sleep, taking brisk walks to clear my head...it works temporarily but essentially I'm stuck riding it out until my body finally rids itself of the gluten. Any suggestions?
  8. I meant to reply to you sooner...sorry about that! Your story wasn't rambling at all. It clarified the situation for me in a way that none of my well-meaning but non-celiac friends could. The neonatal ICU nurse story was a perfect example. It's similar to being afraid to fly after hearing about a plane crash. Of course the news is going to report (endlessly, it seems) about a plane crash or mishap without even mentioning the thousands of planes that land safely every day in this country alone. When my anxiety is that high, however, all logic goes right out the window. Compounding the situation is that my OCD kicks in and I obsessively research everything celiac-related I can find, distressing myself even more. I seem to go looking for trouble. Thanks to you, and to everyone who responded, for being my voices of reason. I'm feeling better.
  9. IBS seems to be the "go to" diagnosis when the doctors can't figure out what's wrong with your gut and don't know enough about celiac to test for it. My dx was a fluke...the G.I. doc I went to for the pain under my ribs ordered an endoscopy suspecting gastritis. Turned out negative for that but positive for celiac. Glad he found it, but then he showed his ignorance about the disease by telling me it was ok to cheat occasionally. Uh...no.
  10. Some doctors are awful. When I was still trying to get a diagnosis, one internist told me it was IBS due to stress. He gave me prescriptions for Lexapro and Xanax and actually said that I would end up institutionalized if I didn't get a handle on the anxiety. Can you imagine? I had one horrible reaction to the Lexapro and never touched it again. The Xanax remains unopened in a desk drawer. An eye surgeon who was called in to examine my elderly mom in the E.R. when she fell a couple of years ago and struck her eye socket discovered macular degeneration (she was 85 at the time). He told me it was hereditary and I could expect it to happen to me. What was the point in telling me this?
  11. Dee, The thought crossed my mind that I could have been accidentally glutened, as my anxiety hadn't been this high since before DX, but after retracing my steps I still can't figure out where it would have come from. In any case, I'm feeling MUCH better...everyone's positive, supportive replies have helped me calm down considerably and I went out and burned off some of this excess nervous energy yesterday. Some housework still needs to be done, but after that it's time to kick back and put my feet up to relax. Thanks again to everyone. Hope you're having a great weekend.
  12. Yes...Anxiety No More. I discovered his website when the anxiety attacks first started and ordered his book. I still have it but haven't read it in a few years. It's time to check out both the book and website again. Thanks for the referral. :-)
  13. I was DX with celiac on 10/11/12, about 18 months after initial onset of symptoms. Except for chronic upper abdominal pain and an 11-lb. weight loss, my symptoms had been more neurological than digestive: massive brain fog, occasional tingling in hands and feet, chronic fatigue. The worst was raging anxiety and panic attacks, followed by crushing depression. The doctor who diagnosed my celiac clearly knew next to nothing about it -- he actually said I could occasionally cheat and eat gluten. I was left on my own to research my condition as well as what I could and couldn't eat. With my gluten-induced anxiety levels so high, my research sent it through the roof. I posted questions on this forum about coping mentally with the disease and how to manage the fear, and was reassured by a lot of caring people. With the help of my wonderful nutritionist, I responded quickly to the gluten-free diet. In two months my abdominal pains were gone and my energy returned. In six months all the other symptoms resolved themselves and I gained back all the weight I'd lost. I didn't seem to have any additional food intolerances. After time, effort and a couple of accidental glutenings, I mastered the lifestyle and it became second-nature. My anxiety, while not entirely gone, improved tremendously and my mood improved. I felt well and optimistic for the first time in a couple of years. Even prior to diagnosis I continued to have annual routine exams, but the doctors couldn't figure out what was wrong with me. All my blood work was normal. Thyroid functions were normal, I had no anemia or other deficiencies. The celiac panel is what caught the disease and confirmed by endoscopy. It seemed I was very fortunate to have been diagnosed only 18 months after onset of symptoms and seemingly before any serious complications set in. Earlier this week I felt mentally strong enough to go back to researching celiac information online. I found a blog that I thought was the answer to my prayers. But I started reading one story after another from celiacs who developed food intolerances or other illnesses after being gluten-free for years and my anxiety ramped up again. I feel well. I've been feeling well for nearly a year. My most recent blood work last November showed no deficienices and everything to be normal. Even my monocyte levels were normal (they were sky-high at diagnosis). Based on exams and test results I appear to be healthy except for the celiac. I thought that by avoiding gluten (accidental exposure notwithstanding) and eating healthy my gut would eventually heal and I'd be ok. Now I was reading stories about people who were developing other illnesses after being gluten-free for years. So now I'm emotionally back to where I was 18 months ago, except that I feel physically well but scared to death, anxious as all hell and unable to deal. I've gotten nothing accomplished all week because fear has kept me paralyzed. I need reassurance. I need answers. My nutritionist has already warned me that I will not heal if I don't learn to manage my stress levels, and until I read those blog posts I had it all under control. How do you manage the fear and the knowledge that even doing everything right there's still the possibility of complications down the road? I can't imagine living the rest of my life with this fear. That's not living.
  14. Hi, Ben -- Welcome to the boards. I was a regular here when I was initially diagnosed 18 months ago. I was sick, exhausted, scared and completely overwhelmed by the amount of conflicting information I found online. The G.I. who diagnosed me knew next to nothing about celiac. The biopsies he took during the endoscopy he ordered looking for gastritis positively diagnosed me. He called it a gluten allergy with no cure and the only treatment was a gluten-free diet for life. But he said I could occasionally lapse from the diet with no harm. Then he sent me on my way with a handful of pages about what I could and couldn't eat. It took less than five minutes of Googling when I got home to learn that celiac is an autoimmune disease, not an allergy, and that it's NOT ok to lapse from the diet without causing additional harm. I made a lot of phone calls to manufacturers in those early days as I learned how to navigate food labels. With the help of my wonderful nutritionist whose brother is also celiac, I also learned not to fear eating out. I posted questions here and received the most wonderful advice from a member named Irish Heart: don't let your disease define you; don't let it confine you, either. You are not your disease, and you'll slowly learn what does and doesn't work for you. Just like every celiac presents different symptoms (I never had diarrhea...exhaustion and raging anxiety were my most prominent symptoms), every celiac also recovers at a different pace. It took me two months to start feeling better once I went strictly gluten-free, six months to have more good days than bad, and nine months to feel healthy and practice yoga again after being too exhausted for nearly two years. Within months I gained back the 11 lbs. I lost (and then some after discovering gluten-free cupcakes). My most recent blood work last November showed my monocyte levels were normal so clearly I'm doing something right. As for the conflicting information online, one of my friends once remarked about looking up health information that Google has you dead within three months regardless of your condition. There's a wealth of valuable information out there; there's also a lot of crap. I found the "most celiacs are slowly dying" link at the top of a search as well and naturally clicked on it. The authors of that article aren't completely wrong; it takes more than simply a gluten-free diet to heal the small intestine. Celiacs also need supplements like probiotics to restore good intestinal flora and a diet rich in anti-inflammatory and healing foods. My nutritionist told me the same thing. But hey, what a coincidence...the authors of that "celiacs are slowly dying" article just happen to be selling a book about that diet as well as the supplements they recommend. They're trying to generate traffic to their website to sell something, and what better way than to grab a newly-diagnosed celiac's attention than to tell them they're slowly dying? My advice regarding researching information online is to write all your questions down to ask your doctor, and if you can't wait that long then stick to reputable sites like this one and Mayo Clinic. Even WebMD tends to be a fear monger. Also a good nutritionist is a valuable ally. Once you settle into your new lifestyle and begin to feel well it will all become second-nature. Try to develop an upbeat attitude about your condition. If nothing else, remission only requires a dietary adjustment...no relying on meds that may or may not work. Good luck and hope you feel better soon.
  15. tspiggy

    Ugh...just Need To Vent

    Thanks for letting me vent and for your understanding. Feeling much better this morning...emotions are level and I'm too busy today to think about anything relating to celiac, which is a good thing because this has consumed me far too much. Last night I found a dedicated gluten free bakery in NYC online and am adding it to our list of stops the next time we take the train into the city. I'll probably spend way too much but it will be SO worth it!