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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com 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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

caitlynmariah

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  1. Hi & thank you for your reply! Ironically, our stories do sound strikingly familiar! I'm sorry you have to ride this struggle bus also - I know how much it can suck!! Unfortunately, I am in the process of heavily considering doing the gluten challenge because I've already sustained further damage from whatever disease or illness it is that I have going on. I'm already scheduled to see a Rheumatologist for a potential autoimmune disease diagnosis.. and I know how AI diseases are highly comorbid. My grandmother has fibromyalgia & it's speculated I do as well, which I know that illness can be highly indicative of Celiac as well. Are there any resources (I.e. Websites) you know of that go into detail in discussing the gluten challenge? It's a really difficult decision with a full-time work schedule, and the fear of being and feeling sick for a long time.
  2. The upper endo had him taking six biopsies & my colonscopy was only biopsied three times, and ONLY my colon was biopsied.. NOT my terminal ileum (the portion he could scope, anyway), which I had basically requested because I thought I had Crohn's. He was under the impression I had Colitis, even microscopic, which suggests why he only took samples from my colon. Still royally pissed off at this fact! Luckily, I had both done at different hospitals but that both have patient online portals wherein I can obtain my results. Prior to me having my upper endo procedure, my GI speculated I had Celiac that hadn't yet been "caught", although I told him I had been gluten free for almost 3 years prior to testing. He stated that if I was STILL having symptoms, my test results would absolutely be reflective of this. Well, obviously they weren't. And here I am, still symptomatic. In reading over my results, the pathology states I was only tested for H, pylori & that only evidence of Gastritis was found in my stomach & duodenum. NOWHERE on that pathological report is the word "Celiac" mentioned. Does this suggest I wasn't even tested for it??? I feel like he was "testing" me only through gross observation & with his naked eye!!!!
  3. Pieces of your story sound harrowingly familiar. Please let me extend my heartfelt empathy that you still have symptoms - if anyone knows what that feels like, it's me. When you were tested for Celiac, did you have to blatantly ask that your biopsies be sampled and examined for this disease? Prior to my upper endo, my GI doctor speculated I had Celiac that hadn't yet been fully "caught"... I said I've been maintaining a gluten-free diet for almost three years, and he said if I was still having problems it meant my test results would surely reflect that. Well, they didn't. And I'm still having problems. I just recently found out, after mulling over my biopsy results for the hundredth time, that it appears as though my (six) biopsies were only tested for H. pylori.. nowhere on the pathology does the word "Celiac" appear. Hmm, strange? I think so. Also, strangely enough, my GI doctor showed me gross images of a random patient's pillcam results who indeed had Celiac. The slides showed distinctive villi & my doctor informed me that if I had Celiac, this is exactly what my pillcam recording would find (I had the computer with me that day, and could monitor the gross (literally & figuratively) images as the pill moved through my digestive system.
  4. Cyclinglady, First of all - thank you SINCERELY for your thorough & kind response. I apologize it's taken me quite some time to generate my own response, however, I've just been busy with work. As I've mentioned in an above response to another's post, I currently do not maintain a "Celiac" kitchen space. For example, my family shares a toaster, condiments, cutting boards, knives, other appliances, etc - you can assume the rest of the picture. I am also the only person in my household who eats a gluten free diet. Furthermore, on the rare occasion I dine out, which I hate doing because I have IBS & seem to ALWAYSSSS "pay for it" for the next few days afterward, I do occasionally consume foods that would have potential to share a fryer (fries), and be subject to cross contamination. I also do not dine exclusively at strictly gluten free restaurants with certified gluten free cooking preparation methods. Though, if a location offers gluten free "options" I'm not sure how imperative a strictly gluten free restaurant is, though I know Celiac varies in severity & I guess it could be I'm one of those "hyper-sensitive" individuals if I do indeed have the disease. Anyway, in regards to the "gluten challenge" to have results appear in testing.. how long does one have to consume gluten products for? I'm in a place now where my insurance is almost fully covered, and I'd seriously consider doing yet another upper endoscopy (I had my first performed in March of this year, which only evidenced Gastritis of the stomach and duodenum) but I want to make sure I'd do this "right" if I so chose to. I'm already going to see a Rheumatologist in a few weeks time (been waiting over three months time) because of concluding issues. I feel that my problems have only grown increasingly worse in the last few months & I worry this "trend" will only continue if I don't pursue an answer. Does anyone on this thread maintain experience with reintroducing gluten just to be re-tested for Celiac? I've heard the endoscopy is gold standard, and that blood tests aren't always conclusive, nor are they accurate. Can anyone confirm, please?
  5. No, my kitchen is NOT Celiac safe/friendly. Although I do maintain a gluten free diet and use only gluten free products in my cooking/backing, there is high risk for cross contamination with toaster use, other appliances, butters, sauces, etc. Same goes for the rarer occasion that I'll dine out - I eat gluten free & only from a gluten free menu, but I don't only eat at places with Celiac friendly kitchens/prep space. From what I can remember, I'd like to say I have been woken up with issues just a few times though, and not anything significant. I won't dispute the probability I have IBS, however, I think there is more going on, too. Thank you for your kind words & well wishes.
  6. Hi to any & all who read my post, and an advanced thank you to those who reply, My post may be kind of robust & lengthily, but please read until the end if you are able. To give a sort of "back story" here, I'll explain my situation in a nutshell. In November of 2014 I was diagnosed with a gluten intolerance by my allergist after recurrent, severe mouth ulcers and a bodily rash. I had a blood allergy panel, but NOT a Celiac specific panel, which ruled out other food allergies completely - corn, pea, chickpea, chicken, tomato, egg, milk, etc. My allergist suggested a gluten-free diet, which I adopted & have been adhering to since then. Recently, I've been acutely sick since August of 2016, so we're talking a year plus now. My symptoms began with a burning abdominal sensation, pain after eating, premature and uncomfortable full feeling, bloating, etc. My internist referred me to my current GI doctor where I was diagnosed with GERD (chronic acid reflux) , and prescribed Omeprazole, which I still take daily. My next appointment in February had me still feeling awful & my GI doctor decided to perform an upper endoscopy, which I did in March. He was looking for ulcers, evidence of bleeding or infectious disease, and Celiac. Mind you, I had informed him that I've been eating strictly gluten free for almost three years now. He claimed this really didn't matter? This has left me wondering. Anyway, the results came up empty, but I was found to have evidence of gastritis. Then came the rest of my symptoms - frequent diarrhea, bloody diarrhea, extremely greasy stools, stools that float, mucus in stools, unable to "wait" to use the bathroom (I.e. Urgency), alternations of diarrhea and constipation, weight loss, low grade fever, EXTREME fatigue, poor concentration, memory loss, cognitive decline, and my mouth sores have reared their ugly head once again. After I first went gluten-free, the ulcers probably cleared up for a good year at least, which was heaven on earth for me. Now, they're back with a ruthless vengeance. As we speak, I've barely recovered from one for a day or so, and I'm down with two more. You can't even make this stuff up. After I addressed these new symptoms with my GI, he was concerned I may have had Crohn's Disease or Colitis, so he performed a colonoscopy, which ruled out both conditions through gross observation & biopsy samples. Since colonoscopies can only read so much of your colon & terminal small intestine, I then had a PillCam to see the rest. The only results he could suggest was that I have a "slow bowel transit," so I was diagnosed with Irritable Bowel Syndrome. The umbrella term for all intestinal and abdominal suffering with no definitive cause. Summary of my bible here is that I'm still suffering greatly. The intestinal issues are really giving me poor quality of life, and these pervasive mouth ulcers are more than I can bare anymore with the pain, inability to eat, weight loss, etc. it's all a sick and harrowing cycle that I am caught in the middle of. In saying this, I'm almost curious that I could have Celiac disease that was horribly missed. If I had already been gluten free & a biopsy was taken it would appear as though I'm a healthy individual, no? I was informed you had to be eating a strict gluten FILLED diet prior to ANY testing. ALL of my testing was performed after I already went gluten free, which could have altered results horribly. I'm almost crazy enough to think that if this is the case, I'm going to eat gluten just so I can be re-tested because I can't go on like this anymore. Can anyone please clarify and/or suggest something?
  7. Gluten Free On Royal Caribbean? Anybody?

    Wow, thank you so incredibly much, CyclingLady! Your reply has been very helpful and I really appreciate the thorough manner in which it was composed. Thank you, thank you! I have already thought of a few more questions that I hope you wouldn't mind answering (and I'm sure more questions will come in future days!). As I stated above, I am definitely bringing my own suitcase full of safe foods for me to eat throughout my trip in effort to reduce the stress/anxiety surrounding my allergies and I don't mind over-packing but I was curious about the potential of specific foods that I may not need to pack! Do you recall that the ship had Oatmeal and yogurt out for breakfast? I know the last cruise I was on (different cruise line, however) did have prepackaged (safe) yogurts and a vat of oatmeal, which for most with Celiac would not be safe although I have no issues with oatmeal. I eat Quaker frequently with my NCGI and have no issues surrounding that particular food, which I have heard is common among other sufferers and that gluten-free oats are typically necessary for those with celiac, which I do not have. That being said, if Royal Caribbean does indeed have oatmeal, I will eat it.. but if they don't have it at all, I would want to bring my own instant packets. Do you remember these two specific foods? I consume a lot of both of these foods as I really love them, and the health benefits of yogurt are highly beneficial to my nutritional deficits stemming from my food intolerances as well as previous oral issues I had due to my NCGI. I am not a "picky" eater by any means, but I do have certain staple foods that I enjoy eating and I am not very adventurous because I easily get an upset stomach from spicy or "ethnic" foods.. e.g. chinese, etc. I love any kind of Italian food though, so I am thrilled to hear about the pizza! My family actually has reservations at Chops Grille.. Did you eat there? And if so, was it a successful/enjoyable dining experience? Please let me know! Also, my sister is over the moon to have Ben & Jerrys on the station on board.. Do they have any gluten-free options? If not, that is understandable and really, I'm not even an ice-cream lover, just curious! Thank you again. I really apologize for the seemingly endless questions!
  8. Hello, all! I will soon be setting sail on Royal Caribbean's Liberty of the Seas (yay!) for a ten day cruise. While this is by no means my first cruise, it is my first time traveling with a severe gluten intolerance, and on this specific cruise line as well. I have a few questions & really just wanted some personal testimony from others who have traveled successfully with a gluten-free lifestyle. My travel agent is extremely helpful and has definitely done whatever was necessary to accommodate me and my dietary needs, however, she is not gluten-free and therefore does not understand the full extent. Like I said, I will be gone for ten days, and I need to ensure I have enough food to eat at all times. I am already underweight enough and really, really cannot afford to lose any more & do not have a desire to either. I am bringing a small suitcase as a carry-on with my foods full of snacks and anything else. Does anyone recommend any snacks that travel well or things they brought/wish they had brought? Suggestions are definitely encouraged and celebrated! Aside from dry items; I really am concerned with bringing items I may need that do need refrigeration (ex, salad dressing - I'm really picky & need my blue cheese). My travel agent said this is fine and even requested a refrigerator for my cabin for medical reasons, telling me this would be no problem AT ALL and that I could bring whatever foods I want - perishable or non. Upon doing some of my own homework/research this AM, I saw that RCCL says you can only bring non-perishable items on board? Is this true, can anyone validate? If I have a refrigerator for medical reasons, I can't imagine them telling me that I couldn't bring my items that I will travel with in an insulated bag prior to refrigeration? Thanks in advance for the validation. My other questions surround eating the food already prepared on the ship.. I really am having concerns surrounding this, but if enough people can ease my fears with their (positive) personal experiences, I will feel a lot better, which is ultimately why I am here posting. I am aware the sit-down dining restaurants easily cater to gluten-free/other dietary needs and cruisers have had no issues eating there but I am curious about the buffet. My family (including myself!) LOVED the buffets aboard our previous cruises because of the freestyle dining anytime you want, anywhere you want, and anything you want. I really would love to be able to eat this way with my family but don't know the set up of the buffet dining hall. Are there certain sections dedicated to gluten-free diners? Or will someone be there to show me which items are "safe/okay" for me to eat, and which ones aren't? Obviously I know I cannot indulge in a plate of pasta, or a bagel or toast, but there are items such as salad dressings, potatoes, meats etc. that I can eat if they are prepared/handled safely. Are any of these items in the buffet safe for gluten-free diners who have been on Royal Caribbean's Liberty of the Seas? If so, what kind of foods did they have? Please be as specific as possible. I understand that the restaurants can prepare something for me while my family eats at the buffet, but this will mean that my meal isn't free and I will have to wait for my food to be prepared. This translates to my family (especially my father and sister) eating without me and me eating by myself, which will then make me feel rushed and alienated. Ugggh. If anyone has had any personal experiences, would you please share? Please, please, please don't hesitate to share ANYTHING - good, bad or indifferent. I WANT to know if you had a horrible experience on an island port because you hadn't thought to bring any food off the ship to eat there while you did your excursions so I can be prepared and bring my own! I WANT to know if you got sick from eating X, Y and Z so I can avoid those items as well. Please don't be afraid to upset me in anyway, I will be upset either way at some point in time, I am sure (especially when I see people sinking their teeth into bagels! ) Thank you!
  9. Hello there! I found out late last year after years of relentless health issues that I do in fact have dietary issues with gluten. I was diagnosed with a Non-Celiac Gluten Intolerance & have been following a strict gluten-free lifestyle since per my doctor's requests. This has been a great learning experience with me as I love to cook/bake & while at times these lifestyle changes are incredibly daunting I am learning to cope pretty well. However, two food items have literally plagued me since my diagnosis, especially one thing - bagels. UGH. They are just NOT N.O.T. the same, I don't care what anyone has to say on this front! They just aren't & I am absolutely heartbroken. I've tried Katz (texture was closest IMO to real bagels, but let's get real can you say petite?) & Udi's (which are nasty). Sorry, Udi's. I just can't find another bagel that I love and am devastated to think I'll never eat a real bagel again.. It's making me want to impulsively drive & secretly consume one, but that would only be hurting myself, which is obviously irrational and not worth it. Does anyone have any suggestions on what bagels they enjoy that are gluten safe? Or even a recipe I could try? I'm at my wits end with this dilemma. Remember, this is coming from a girl who would rather eat a bagel with cream cheese than birthday cake & ice cream - yeah, my bagel run loves that deep. I used to get the Multi-Grain Bagel from Dunkin at least twice a week and miss them terribly. The texture is what is really killing me... Udi's tastes like those Thomas bagels that come pre-packaged in the bread department at a grocery store.. Soft & mushy..WTF is that? Ugh. I'm obviously extremely distraught & am dying for some suggestions/help? What have other fellow gluten-free individuals done on the bagel side of things? Another question of mine is where might I be able to safely find a gluten-free milkshake? I'm really nervous about going to a fast-food chain to get one, but if there are any places that others have avoided cross-contamination or a reaction from, I'm willing to try. Lastly is the debate on oatmeal. Since going gluten-free I've been eating the Chex brand gluten-free oats to avoid cross-contamination however, they're really costly at over $5 a box/bag. My question is, if you don't have Celiac how necessary is it to avoid oats at all costs? I used to eat Quaker and don't know if they were the true root of my issues as I was having health problems all around, so I can't truly pinpoint any one food. I would be willing to go back to trying Quaker if anyone can tell me they have a non-celiac gluten intolerance and experience no issues with it? Keep in mind though, I do eat oatmeal pretty regularly - nearly every day. Thanks in advance.