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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 tspiggy

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  1. 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.
  2. 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 works temporarily but essentially I'm stuck riding it out until my body finally rids itself of the gluten.  Any suggestions?
  3.   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.
  4.   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.
  5. 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?
  6. 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.
  7. 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. :-)
  8. 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.
  9. 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 relying on meds that may or may not work.   Good luck and hope you feel better soon.
  10. 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!
  11. A week into eating gluten-free and feeling somewhat physically better, but emotionally still fragile. I'm having a very difficult time dealing with my DX despite reassurances from so many of you. My moods are all over the place and I have a meltdown every day at the most unexpected moment (today's happened while sitting in my stylist's chair having my hair cut and colored...thankfully she's a friend of mine and had a box of tissues ready). A few minutes ago I came across a story one of my friends posted on Facebook about Hostess Brands shutting down and liquidating its assets today. We all commented on how sad that one of our childhood icons, the Twinkie, will be no more. Now, I haven't had a Twinkie or a Ring Ding (my favorite) in years, but now that I can't have one because of celiac I suddenly wanted one. It's one thing to choose to pass up something; it's entirely different when that choice is taken away from you. Realizing that whatever Hostess items currently on store shelves are the last opportunity for my husband to have his beloved Ring Dings, he just took off for Sam's Club to stock up on as many boxes as he can get a hold of, leaving me simultaneously fuming and sad. I can't begrudge the guy his Ring Dings, and I've certainly put him through the ringer ever since my DX. He and our daughter have been insanely supportive. But man, it seemed so insensitive of him. So here I am venting because I don't want to make this an issue with him. All I said to him was, "Just please be kind and hide them and don't eat them in front of me." After my tantrum here I'll put on my big girl panties and deal. I just needed a place to vent. Thanks.
  12. I wasn't entirely sure where to post this question so if I'm in the wrong place I apologize. Bear with me; I'm a newbie. I'm now on day 6 of my new gluten-free life and am discovering that because much of my diet already consists of whole foods it's not as difficult as I originally expected. Avoiding cc because I share a kitchen with gluten eaters is the bigger hassle but again not terrible because my husband and daughter are helping. I'm still feeling emotionally fragile as I process this new, completely unexpected news but I'm hoping that will eventually subside as well. On the upside, I noticed that after only a few days the brain fog has lifted and the myriad odd little aches and pains are gone. It's amazing what gluten does to a body. Anyway, my husband is a firefighter and we're attending his chief's 20th anniversary commemoration party on December 8th at the La Quinta hotel in our town. It's a full sit-down dinner with a limited menu offering a choice of beef, chicken or fish but I naturally worry about gluten-containing ingredients and cross contamination. We accepted the invite before my DX and because my husband is an officer he's expected to attend. I also don't want to miss the fun, so we agreed to go ahead with our plans to attend. I'll deal with the emotional aspect of this when it comes...I'm hoping I'll have so much fun dancing and partying that I won't feel as isolated as I do now. But how do I handle the meal? I've read advice to eat before going to a party or bring something with me that I know is safe. But how do I handle an event with a dinner that's going to be prepared the same way for everyone? Should I contact the hotel ahead of time and explain my situation or seek out the maitre d' at the event and explain it to him privately? Or should I simply eat before we go and avoid the hassle altogether?
  13. How Do You Stay "sane"?

    Just read Addy's reply about crying in the grocery store. That was me this morning. My husband is off for Veteran's Day and after dropping our daughter off in school he took me to Shop Rite, headed straight for the gluten-free aisle and told me to pick out anything and everything I wanted. After reeling from sticker shock (man, that stuff is expensive!) I chose a few items that I knew he would also eat, then thew myself a pity party while standing on line waiting to pay. It suddenly occurred to me that our grocery bill was going to increase because of me and I felt as if I was being a burden on my family (BTW, I'm hoping the mood swings are all celiac-related and will eventually go away). When I expressed my feelings to my husband in the car on the way home, he held my hand and said if it was for my health then he didn't care how much it cost. And of course I cried again with relief and gratitude. So glad I married a good guy. This will take time but I'm tired of crying so much.
  14. How Do You Stay "sane"?

    Thank you, everyone, for your replies. They were so reassuring that I cried a river (of relief) when I read them. I fell into a deep depression after receiving my DX. At first I was relieved to know that there was indeed a medical reason for why I felt so miserable in the past year. I'd gotten sick of being told I was going through a bad menopause or it was all in my head. A doctor I saw two months before my DX brushed it off as my nerves...I had been suffering from extreme health anxiety since June 2011, which started seemingly overnight and was very unlike me. I was so paralyzed with fear about what could possibly be wrong with me that I didn't even push to be tested. Not that I had any idea what to be tested for, and certainly celiac never even crossed my mind. When I started reading about the disease after my DX and what I had to do to avoid cross-contamination I felt so overwhelmed and alone. It's one thing to read postings from so many other people online and know logically that I'm certainly not alone. But when I'm the only person I know who has the disease it's entirely different. I'm grateful to my daughter, who has agreed to go gluten free with me, and to my husband who will eat whatever I prepare at home so that I won't have to make two separate meals. He still doesn't quite understand the implications of accidental glutening and insists that I'll be fine if we go out to eat, but has agreed to follow my lead. I'm only just starting out my new lifestyle and am nowhere near ready to eat out. As it is I'm dreading the three holiday parties that are coming up in December but I'll deal with them. IrishHeart answered the question that I was afraid to ask: do celiacs who adhere strictly to the gluten free diet and take care of themselves have a shorter life span as a result of their disease? It's reassuring to know that not necessarily. That knowledge alone eases my fears greatly and I'm grateful for your response. Thanks again for being the voices of reason in this cloud of uncertainty and fear. I still have some mourning to do for my old lifestyle but feel empowered by the thought of taking that sword from over my head and putting it in my hand. Great I'll refer to in my weak moments.
  15. I'm 49, newly diagnosed and started the diet this weekend. Eliminating gluten from my diet (at home, anyway) isn't going to be as difficult as I thought because it turns out that about 90% of what I eat is already gluten-free and there are gluten-free versions of the remaining 10%. I've eaten pretty healthy all my life so I can deal with the dietary restriction. But the emotional aspect of the disease is affecting me. First of all, I was shocked to learn I have celiac disease, as I don't know anyone in my family who has it. If it came from one or both of my parents then their undiagnosed (and therefore, untreated) celiac has had no affect on either their health or longevity. My father is 92 and my mother is 86 and they're both in remarkable health. My brother, who's 63, doesn't appear to have the disease. Lucky me; I crapped out in the game of genetic roulette. Anyway, my quality of life and emotional well-being are becoming compromised. Taking the necessary precautions to eat safely all seem to require a level of paranoia that can't possibly be good for my mental health. I made the mistake of reading all the medical websites that describe the potential complications of untreated celiac disease, and I'm terrified of the consequences of accidentally ingesting gluten. I will never knowingly cheat on the diet but accidents are inevitable. I'm lucky to be a “silent” celiac who doesn't have an extreme reaction to gluten but I'll know the damage is on the inside and increases the risks of worse things happening to me down the road. I don't want to adopt a victim mentality or define myself by my disease. By all means I have to be careful when I eat but otherwise want to live a normal, healthy life that includes (eventually) dining out, socializing and traveling. I'm hoping that in time taking the necessary precautions becomes second-nature and I'll go about my life as usual. But right now my condition and its potential future health implications are all I can think of. I feel as if I'm walking around with a sword over my head. So how do you stay sane and not let celiac disease adversely affect your quality of life?