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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 Flaykee

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  • Birthday 05/19/1965

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  1. Sorry, me again.  I have to meet with the specialist for my endoscopy next week.  Is there anything I should ask about taking supplements?   I am already prescribed iron pills and B12.  Should I ask about taking other vitamins?  A probiotic?  Enzymes?    I normally suffer from constipation and a myriad of digestive issues.   Thank you for your assistance!
  2. Well, I was off gluten for about 4 - 5 weeks, then got the letter to go for my endoscopy and go back on gluten.  So I've been back on for just over 2 weeks.   My family doctor diagnosed me back in January based on my symptoms, family history and the tell tale positive blood  panel.  She was going to order an endoscopy to check on damage due to the years of reflux but it can take months to see a specialist in Northern Ontario.  Sure enough, the appointment notice came back for June 11.  That was six months away, but no mention of going back on gluten.    Then in late February, I got a new letter... the specialist (GI) reviewed my case, scheduled me in for March 21 and was directed to go back on gluten.  Almost like a reprieve, eat the foods I would forever have to stay away from!   The first few days were horrible.  I suffered heartburn and indigestion, bloating, gas,a fullness from my throat to my bowels.  Blah.  Then the joint pain started, the stairs are again hard to navigate normally, step by step again.  I want to sleep all the time, but when I'm in bed, I toss and turn and start the nightsweats.  My face has returned to the vibrant red that I was so happy was gone!  Headaches are oh so wonderful!!  Geez, I'd almost forgotten about that numbness that showed up once in awhile on my cheek!  And the list of symptoms goes on...  I made a comment to my husband that I can't wait to go gluten-free again but I vowed to perservere until the endoscopy.    HOWEVER, I went out of town last week and forgot to take my iron pills.  I was still eating gluten foods but my stomach felt somewhat better.  Still some bloating but a lot of gas,  heartburn and indigestion, but is less intense. LOL there are times I'm afraid to walk or move suddenly for fear of a gas slippage, thankfully so far it's only happened when I've been alone or only in front of hubby  !   I haven't taken the iron pills since last week but am wondering if maybe they've been contributing to my intestinal discomfort.  In the past, I've taken them with food, without food because I suspected a correlation.  I keep wanting to take one, just to see but I'm afraid of getting that awful intestinal feeling again.  I can tolerate the lessened intensity of the symptoms because I know it's only temporary until my scope is done.   All other symptoms are getting worse though, like the joint pain.  And for some reason, even being on gluten, my bm's have changed.  I have been a sufferer of constipation.  Now I am going a lot, not diarhea, but loose(more foamy), urgent and not pleasant aromatically!  This is gross I know, but when I have a bm at work, I am embarrassed and hope no one else has to go after me... and I am always multiple flushing to clean the residue from the toilet bowl.   I don't think being off gluten for just over a month will show significant healing because I went years believing something was wrong based on my deteriorating health, but doctors could never find anything, nor would they even consider I was celiac...weight gain isn't celiac related, so they said!   I'm hoping my scope shows villi damage and nothing else wrong!  And maybe tomorrow I'll try the iron pill and take it from there.   And that's just me needing to share, discuss, vent.  Hubby must be getting tired of me going on and on about this "celiac thing" and I think I need to "talk" with people who understand, can relate.    And for that I say thank you!  Thank you for this wonderful forum and the excellent information and sharing of experiences!  This forum has become my reading material... Who needs "Fifty Shades of Grey" when this is better reading for us celiacs?   
  3. The excessive blushing/flushing!  I had gotten so bad that I would feel my face burning red even if I thought someone was looking my way.  I haven't felt that since being gluten-free.  My face was almost constantly red too, but that isn't the case now!  It was embarrassing to blush all the time and to look like I was always blushing!   Night sweats and being extremely hot at night has stopped.  It is so nice to not turn the heat down so low AND have the fan blowing on me all night throughout the winter!
  4. I was diagnosed in January 2013, so it's a learning experience for me and my family. Hubby has been pretty good at helping me stay gluten-free, a few hiccups but we're getting there. Went visiting my parents today. My mom is always asking me what I can't eat. My toddler niece offered me a cookie and my mom says, "No, Auntie can't eat that. She'll get sick." So my mom is getting it. She was even asking how she can make me my carrot cake for my birthday! Then, my dad was asking me more about it....celiac disease, food, symptoms, how long must I have had it before getting tested, if I've gotten sick since "not eating wheat", what all has gluten in it, what gluten is... He gets up, goes into the kitchen and starts reading labels. "Son of a gun, it must be hard, There's so much you can't eat." It feels good that they want to learn more about celiac disease and are doing their part and aren't just rolling their eyes because it can't be that bad, sort of thing. They know how ill I was before going gluten-free and are happy that I'm visiting more (was almost reclusive before dx because I felt so unwell and could hardly walk) Both my parents have bad digestive problems, and I'm convinced my mom has undiagnosed celiac (quite a few symptoms), but refuses to get tested. My dad's thinking about it. Wonder if both my parents have celiac disease....double whammy for me
  5. Excellent! Thank you! Now I have my weekend set out for me! Just took a peek at the site and looking forward to watching episodes I haven't seen yet!
  6. I think along the same lines as your mom. I celebrate anniversaries too. In May I will be celebrating the 19th anniversary of my 29th birthday! Oh my goodness, I've lost track of my age! I first put 20th anniversary then thought, no that makes me going on 49. Put in 18th, and that makes me turning 47. LOL then I actually had to count the decades then use my fingers to add the additional years from my birth year to figure out what my age actually is! How sad is that? LOL
  7. I am in withdrawal! Has anyone seen Mrs. Brown's Boys? It is hilarious! It's on the BBC. My husband is from Northern Ireland and I lived there for 8 years. One thing he misses is the British comedies. PBS used to have them on at night but they have cut back big time! Thank goodness for the internet! He introduced me to Mrs Brown's Boys a few months ago and I was hooked. Their season ended last week and I am already missing the show lol If you get a chance to check it out, there are some clips on youtube. I know that British humour takes some getting used to, but it does tend to be a bit more risque and contains so many double entendres! The show stars Brendan O'Carroll as Mrs Brown and most of the cast are his family. His daughter on the show is actually his real life wife.... lol sound confusing? But if you like British comedy, this one's a good'un!
  8. Oh believe me I wanted to get in touch with him. Problem is that was during my 8 years of living in Ireland (have since moved back to Canada) And that dr has retired. I was so relieved to get my results, then the anger with him kicked in!!
  9. Officially diagnosed celiac disease on January 14, 2013. A life changing day for me! Finally I got answers! At the age of 47. For me, I have been lactose intolerant since childhood. As an adult, I went through prescription after prescription for indigestion, heartburn, constipation, migraines. I always thought I just had a bad digestive system. IBS, constant bloating and and in 1997, diagnosed with diverticular disease. Suffered 2 miscarriages (2001 and 2002) then infertility. I had a major surgery in 2007 and that's where it all kicked into high gear. Perimenopause started shortly after that. Wonderful rashes (funnily symmetrical in pattern!) started within weeks of my operation, I thought I'd picked up an infection in the hospital! (prescribed creams and ointments for allergies, eczema, dermatitis, menopause symptom) 2007 - Asked my then doctor if it could be celiac. He replied that because I wasn't wasting away, no. My rashes persisted. The ones behind my ears (beautiful welts) were always there, sometimes to the point of scratching till they bled. Clearing up now, but scarred. About 4 years ago, bloodwork done and I had to start taking prescribed iron and B12 supplements. That was it, no investigation into why. Just the "age" thing. Oh and the hypertension so more meds! From the I time started perimenopause, attributed everything to that, including the weight gain. Went to the dr a couple times because I couldn't understand why I couldn't lose weight, gaining when I should be losing. "At your age....", "When a woman is going through menopause...." "Maybe you have to exercise more than an hour daily..." In mid to late 2012, the symptoms got worse. Bloating and gas was awful and I was suffering severe reflux. I wasn't sleeping at night but was exhausted when I went to bed. It started affecting my joints. I was barely able to walk with knee pain, couldn't walk up or down stairs normally. Ankle pain intense. I felt and looked older than 47. "The old lady walk" we referred to it as. Memory bad, foggy, numbness in the face, inside tremors, panic attacks. Extreme fatique (couldn't dress in the morning without taking breaks between clothes items, did the dishes in stages... water in sink, rest, wash half the dishes, rest, wash other dishes, rest.....) no energy whatsoever. It put a strain on the marriage cuz hubby was doing everything and I couldn't. He must've thought I was lazy but I honestly believed I was dying And the doctors could find nothing wrong. Finally my doctor actually listened to me and got the ball rolling. She's a star! LOL I think she was almost willing to give me a diagnosis without the tests just by what I was telling her and what I had written down. I took a full family history. I think my mom is undiagnosed with her symptoms. And I think that my late grandmother who suffered ill health and died at age 54 was undiagnosed based on her symptoms and illnesses. So yes, for me it was years and years of being told it "was this or that" mostly because I was had weight gain and constipation, as opposed to loss and diarhhea. Oh well, still, a new lease on life! Best of luck to you all on this journey!
  10. When I went to my new doctor about being tested for celiac disease, I was informed that OHIP doesn't cover the cost of the celiac panel blood work. I didn't care because as far as I was concerned, it was worth it. I tested positive. It's still worth the $125.00 it cost. ( Several years ago, when I first brought the idea of me having celiac disease up to my doctor, he said no because I wasn't wasting away. So I trusted this "diagnosis" and continued to have health issues until my health deteriorated drastically last year.) HOWEVER, it got me thinking. Isn't it better for OHIP to cover this cost than to keep covering costs for related medical issues of those who remain undiagnosed? If I add up all the times I went to the doctor for gastrointestinal issues, severe unexplained body/joint pain, depression, general unwellness, body rashes, miscarriages (possibly related to celiac disease) over the years and the operation to remove my gallbladder , not to mention the prescriptions (sometimes paid by insurance companies if you're lucky to have a plan), it must be in the high hundreds if not thousands. And had I not been diagnosed, I would have continued to make medical trips for some of the prementioned and possibly new symptoms! I believe that Ontario is the only province in Canada that doesn't cover the cost. Just my rant for the day
  11. Thank you so much for the responses! This forum is a wonderful support network and great for helping us who are new to this! Thank you! I told my hubby today that it is going to be a bland diet for me for awhile while I attempt to conquer this and get my tummy & DH feeling better! And yep, that also means I do all my preparing. I know my husband means well but I've had to almost watch like a hawk in the kitchen. Case in point, before my most recent gluten woes, I was cutting my veggies for salad one day and went to the fridge to get my celery and my knife was no where to be seen. He was using it to cut his dinner rolls! I think my screech almost made him drop the knife! This is all new to him too and he too has unfortunately done things without thinking. It's a learning process for both of us. Cabbage is something I eat frequently, almost like I'm craving it. As for the gluten free products, I am limiting my intake for a couple reasons: 1) With my celiac disease I have gained weight despite my best efforts and have always suffered from constipation. I can't afford to gain weight, my hope is weight loss in a healthy way and 2) I did a glucose tolerance test just after my diagnosis and I have to watch it. My sugar levels are showing me at what they used to call "borderline" Funny, when I first went gluten-free, my hubby was following it with me, eating the same meals, and consuming very little gluten foods, and he commented on how much better he was feeling. His back wasn't aching (he has chronic back pain) and he had increased energy and his BM's were better. He's doesn't have celiac disease but it goes to show you that this monster might present adverse affects that we have always just sloughed off. Actually, hubby can't eat tomatoes and had a bad episode a few years ago, diarrhea anytime he ate tomatoes...and went through so many tests but everything came back clear. Nightshades....Maybe...... Best of luck to you all as we travel this gluten free journey to better health!!
  12. In the past year, my health deterioriated so bad and I had no energy to do anything and my joints ached profusely. My parents and siblings always made comments about me not coming around to visit, or being angry with me because I wasn't spending more time with my young niece. I got the sarcastic barbs about making excuses, being antisocial, lazy. But now, since my dx, they all seem to want to understand, saying they didn't realize I was so sick. I think explaining everything to them and answering their questions makes a world of difference. When I got my diagnosis, I wanted to say "HA, see I told you I was sick!" Maybe giving some reading material on the health issues that undiagnosed celiac disease and not being gluten-free can lead to can help people understand? Or even let people read about the symptoms of celiac disease, as these can be very debilitating. I think people have to be made aware that being gluten-free because of celiac disease is not a lifestyle choice, it's a medical necessity. As for the endoscopy, that can be beneficial. I have been diagnosed celiac disease without the endo/biopsy BUT I do have an endo scheduled for June (the joys of living in rural Canada!). My doctor wants to check on villi damage but moreso for other possible damage caused by reflux and other digestive problems. So for other possible issues, yes, it can be a good thing to have. Health and happiness to you!
  13. Official diagnosis on January 14 2013. I have been doing a lot of research and coming to terms with the gluten-free lifestyle. I've been enjoying eating healthier foods and feeling better. But on Monday Jan 21, tummy not feeling good and that night I had the night time panic attacks that have all but disappeared. My DH went crazy with itching and burning! The next day I do some cupboard searching and there it is, salted sunflower seeds may contain wheat. We've been adding them to my salads and breakfast fruit & yogurt. Okay, so the salads continue for lunch the next 2 days (minus the seeds) and by Wednesday night, I'm feeling terrible. So I start figuring out what else it could be. The only other common factor each day is the pre-roasted whole chicken from the grocery store. Hubby and I head to the store and I read the ingredients at the counter and low and behold, the first few lines contain 2 ingredients I shouldn't be consuming! (must have been the basting juices or maybe injected??) I stopped reading at that point as I had my answer. It was an eye opener, a painful one though. However, in a sense, I am kind of glad the glutening happened because it makes me more aware of how careful you have to be. Things we think are innocent and harmless can contain hidden harm. It makes me more determined to be careful AND it also showed me how I react to a glutening, where I was able to pinpoint the problem foods. A good learning experience that I hope I won't have to use too often. It's also given my husband an eye opener, he does most of the cooking and meal preparation. My doctor has referred me to a dietician who I meet with next week and hubby has asked to come along so he can learn more about the food/eating as he helps me get healthy When shopping we do label reading, our shopping trip time is now extended! And if there is an ingredient that I'm not sure about, I won't buy the product until I've had time to research it. The main thing is, I am happy to have received the celiac disease diagnosis because for too long, there was no explanation for how I was feeling. To know what is causing the health deterioration is such a relief. If my previous doctor had listened to me 7 years ago and tested me despite the fact that I "wasn't wasting away" (his words), I'd have been further along in my healing journey. But I digress.... Happy and Healthy eating everyone, and be careful....that bad gluten could be lurking
  14. Hmmm.... doubts that someone at age 55 would suddenly become celiac??? Maybe more like suddenly started exhibiting symptoms , or worsened symptoms! Well, I worked with someone who suddenly started getting sick. He would eat his lunch and soon after, we wouldn't see him for sometimes near an hour, gone to the bathroom. He had no idea what was going on. His doctors had no idea. It took months before he was finally diagnosed with celiac age 63, just in time for retirement! I imagine his doctors thought the same thing but lo and behold, there it was!
  15. Thank you so much! It really is a journey of discovery. I look forward to full swing gluten-free because to actually start feeling good, wow! I know how good I felt in the one month gluten-free, and then how awful I felt during the gluten challenge. Day 2 of being gluten-free again.... nice to not have a bloated belly!