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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 quakenbake

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  1. Activia Yogurt

    I would like to add that I was foolish enough to get the Activia with the extra fiber (assuming that since I've been ok with the regular Activia that I didn't need to look at the label for this one because it would be safe too). Boy do I ever regret that now. I just ate half of it, then noticed the bright yellow letters on the side that said "Contains Gluten." I now have those familiar sharp stomach cramps and am waiting to get sick.
  2. Endoscopy Thursday

    It sounds like we are in very similar situations- I have my endoscopy on Thursday too. I've been back on gluten after a 4 or 5 day hiatus for 2 weeks now, and it is miserable. In fact, I felt worse going back on gluten after being off for even a few days than I ever did just eating it solidly (that's finally starting to get better). However, if it means a good test result, then it'll be worth it in the end. I'm surprised you didn't have to start eating gluten sooner- I was going to have to wait until much later for my endoscopy had I not gotten back on the gluten right away. I only went off to see if that would help me get through finals and a wedding without being sick; it did. 4 or 5 days isn't enough time for any damage to heal, so that's why I'm still good for the test. I'm sure you'll do fine though, your doctor certainly knows a lot more than I do. I hope Thursday goes well for both of us- the sooner we get it over with the sooner we get to eat gluten free! I plan on celebrating with a big pan of gluten-free brownies
  3. If you were very healthy while on a strict gluten-free diet and exercising, then you should go back to that. Since there is so much food sensitivity (including actual Celiac) in your family and you're done with your tests, it just seems like a good choice all around to avoid gluten.
  4. Hello, this is actually my second post here (my first was just a general "Does this sound like Celiac?"), and now I'm in the middle of being tested and such. Before I went in to the doctor, I ended up going gluten free because I was in the middle of college finals as well as participating in a friend's wedding. It was only 4 or 5 days, and I was back on gluten as soon as that was all over. It's been 2 weeks since I've fully been back on the gluten. Since going back on the gluten, I have been very ill, so ill in fact that I just can't handle 3 gluten filled meals a day- I eat gluten free once a day just for my own sanity. I should add that I'm not being extra careful or anything to avoid cross contamination since I'm supposed to be back on gluten. Anyways, this brings me to why I'm posting. After getting incredibly sick after breakfast and lunch, I had some Annie's gluten-free macaroni and cheese for dinner last night. My stomach started cramping afterward, which I thought was peculiar. That had never happened after eating any gluten free meal the past 3 weeks. I had a glass of milk this morning with my gluten free meal of the day, same thing except much worse. My stomach and abdomen are cramping quite painfully. I know a lot of Celiacs have problems with lactose, which is what got me thinking. It seems very sudden, however, that I should be having problems with it now after never having issues with milk before (one of the very first potential diagnoses was lactose intolerance, and cutting out milk seemed to do nothing). Can problems with lactose develop in a matter of weeks? Have I lost my mind, or is it just possible cross contamination because I'm not being careful?
  5. You are most certainly not neurotic and sound like a great, and understandably worried, mother. I had horrible colic as a baby and needed special predigested formula. I have since suffered with all kinds of health and GI problems and am now just discovering that I am intolerant to gluten. You sound like you are doing everything right- trying to figure out what is causing your daughter's problems and making sure she isn't eating breads and such. It is hard to accept the diagnosis or potential diagnosis of any disease, especially when it is your child. It seems like it's easier for you to understand because you seem to have gluten sensitivities as well, so you can empathize with as well as actually see what's happening with your daughter. Your husband will come around eventually, but I'm sure it is very frustrating in the mean time. I hope things turn around sooner rather than later; patience, although needed in vast amounts from any perspective, can be hard to come by. Just keep doing what you're doing, and I'm sure it will all be fine.
  6. I too have had some, but not all of the symptoms (mostly the GI stuff, I have had problems with asthma and allergies/sinus infections so bad that they required surgery, I have bad headaches/migraines, and back and joint pain). I actually just has surgery to look for endometriosis because my periods have always been off too. I'm in the process of being tested for Celiac right now, so I'm certainly no expert. It might not be a bad idea to get tested, but if you do, you will have to go back to eating gluten. Eating gluten free before any kind of test will affect the results (if you have Celiac and you're not eating gluten, your body isn't producing the antibodies or being damaged so nothing will show up). This is the part of testing I'm in (I had blood drawn on Tuesday and am having an endoscopic biopsy next Thursday), and it is miserable, but I do think it will be worth it in the long run. Obviously if you feel better eating gluten free, the best thing to do in the long run is to not eat gluten.; it'll just depend on if you want to get tested or not. From what I've heard, it'll take months for damage and stuff to heal. It's not going to be an instant "I feel better now" type of thing. I hope that I eventually feel as great as everyone who has been on a long term gluten-free diet and that you do too. It's no fun being this miserable, so I hope you get this figured out soon.
  7. I'm in the process of being tested myself, but from what I understand false negatives are not uncommon (at least 20-30% of negatives are false, I believe). If you're feeling so great going gluten free, then keep at it. You can even get false negatives on the biopsy, so if a diet change has really helped that much, why go back to eating the gluten and feeling miserable? I plan on just going gluten free myself after my biopsy next Thursday regardless of what my tests say
  8. Input?

    That is my plan- I'm just going to eat the gluten until next Thursday, and I will be gluten free unless I'm told otherwise. I hadn't thought of IBDs before, and I can't say I'm not worried it will turn out to be one of those instead. I never thought I'd be hoping for Celiac so much; it seems kind of strange to want to be diagnosed with Celiac. Things like Crohn's and UC seem really scary to say the least. I keep telling myself that my symptoms fit more with Celiac, I think (I hope they do), and the fact that my stomach stopped cramping and feeling so nauseous when I ate gluten free for the 4-5 days last week should be a good sign. I don't know what I'll do if it's an IBD...
  9. The doctor's visit went really well, I think. I am so thankful to have the GP that I do and that I am in Houston right now with some really amazing medical care. My GP sent me to an absolutely wonderful specialist who's been in the field for 40 years, I believe, and seemed incredibly knowledgeable, friendly, and helpful. He didn't want to say I had Celiac/Coeliac just yet, which I can certainly understand and respect since I haven't had any tests yet (although part of me was kind of hoping for an instant diagnosis). He did, however, acknowledge that something was indeed very wrong. He wants to see all of my scans, tests, etc. that I've had over the past year or so. He's hoping that maybe one of the many CT scans I've had will show something- he said a CT scan is like a computer, a good one can do a lot and really tell you all kinds of things. I have to make calls to Canada, Florida, and to hospitals here in Houston (I should really not travel so much) to get the information I need, but it will be worth it. On top of that, he has ordered a full blood screening, including genetic testing, for both Celiac/Coeliac and for IBD. I'm still really hoping for the Celiac/Coeliac- it seems so much easier to cope with than something like Crohn's. I'm not sure if my symptoms really fit any of the inflammatory bowel diseases anyways, but better safe than sorry. He also looked at my hypoglycemia (which I had been treating as a disease itself due to the large amounts of diabetes on both sides of my family) and the fatigue that I had associated with it (apparently that wasn't right) as symptoms of something bigger. He said that people naturally had hypoglycemic tendencies, but the fact that mine was so severe was most certainly because something else was causing it. Same with the fatigue- low blood sugar should only cause the shakes and general woozy feeling, not make you this tired. He certainly seemed interested in the fact that my stomach cramping and such stopped with the gluten-free diet during the 4-5 days, so hopefully that's a good sign. I can't believe I'm saying that Celiac/Coeliac is a good thing, but I would be so relieved if that's what it was (it could explain everything as far as I can tell). The other tests! I almost forgot about all of that. I was originally scheduled to go in to see the doctor for my consultation January 3rd, but due to a cancellation, I was able to get in today. Due to some other miracle cancellation, I am able to get in for my endoscopic biopsy NEXT WEEK. Talk about lucky or some sort of Christmas miracle. It does seem silly to be praying for something like Celiac/Coeliac, but words cannot express how much I wish that's what it turns out to be. I've already scoped out gluten-free restaurants and bakeries in all of the cities I tend to haunt. I'll be going back to eating gluten-free right after my biopsy since I did start to feel so much better last week. I will probably eat gluten-free regardless of what the tests say, to be honest. Let's just hope that since everything is happening so quickly and smoothly right now that it's a sign of good news and good health to come.
  10. Input?

    Well, I just got back from the doctor a few hours ago. He didn't want to say this is Celiac until I had some tests done, but he definitely acknowledged that there was something wrong. I can certainly respect not wanting to say "I think this is what you have" after not seeing any kinds of tests, nor would I want him to. He's apparently been in the field for 40 years and comes highly recommended. I've had blood drawn for the full screenings for Celiac (including genetic testing, I believe) as well as for IBD- he didn't want to exclude anything just yet. I was also fortunate to not only get in due to a cancellation today, but I get in for my endoscopic biopsy next week! I thought it'd be at least a month or two away. I had been worried, but I was told that even though I had eaten gluten-free for 4-5 days last week, it wouldn't be enough time for anything to heal or mess up the tests, especially since I've been back on gluten for the past few days. My plan is to load up on gluten this next week and eat some of my absolute favorites while I still can (New Orleans style bread pudding anyone?), and then eat gluten-free as soon as my biopsy is done. I'm really hoping that this means something since I've been able to get in to everything so quickly and easily. I could use a little Christmas miracle.
  11. Here it is- the big day, or at least it is in my opinion. I am hopeful that after years of trying to figure out what's wrong with me, I might finally have an answer. Not only would it be an answer, but it could explain all sorts of those little random things that you don't think matter or could be connected to anything. I wasn't supposed to get in until the first week of January, but I had to call last week after not being able to eat for 2 days to see if they could please call if and when they got any cancellations. I suppose I got lucky, but now I'm very anxious to see what he has to say. After having done a fair amount of research, I can't tell you enough how hopeful I am that this is it. This is a list of pretty much everything I've ever had wrong with me and I have found some sort of connection to Coeliac (plus this will help me know exactly what to tell the doctor in a few hours): -hypoglycemia -have been "diagnosed" with IBS and GERD -fairly constant nausea (I'd say a good 90-95% of the time) -heartburn requiring prescription medication -stomach aches where I break out into a cold sweat, start shaking uncontrollably, and feel like I'm going to vomit (although I very rarely do) -inability to have a BM (chronic C), and when I do, I don't think it's very healthy -sharp pains in my abdomen (typically on the right side), sometimes so bad that I can't get out of bed -for the past year or so, I've had bouts each month where I vomit for a day, then have the big D for the next couple days, then I have the abdominal pain so badly that I cannot move for what seems like weeks at a time -I can't maintain my weight (I jump from anywhere between 105-130lbs. and I should be 115-120lbs.) -fatigue (I can sleep for 10-13 hours and feel like I haven't gotten any sleep at all, and not just in an oversleeping kind of way) and I just look tired (I have dark circles under my eyes that make it look like I've been punched) -I'm either starving or I can't put anything in my mouth without feeling like I'm going to be sick -when I was a baby, I had horrible colic and needed to be put on a predigested formula -when I was in high school, I had to have 2 surgeries for chronic sinusitis -for the past year or so, I seem to be breaking out in a red, lacy rash (sometimes with bumps) randomly, similar to an allergic reaction -I have had problems with depression and anxiety for the past 2 years -I get dark spots on my teeth and have had comments from my dentist and orthodontist when I saw him years ago about the enamel on my teeth -bloating and a general feeling of being full or like there is undigested food in my stomach -gas -fairly severe and painful abdominal cramping -pain in my lower back and neck -my skin has gotten much paler than it had been in high school -family history of bowel problems There you have it, probably way more information than you wanted to know. I'm actually having a hard time staying awake while writing this. Oh, something else I should probably add: I was busy with university finals as well as being in a friend's wedding last week. The weekend before, I couldn't eat for a couple days, and when I did, I was very sick to my stomach with the big D (that's when I called my doctor about getting in earlier). I ended up losing 4lbs. over the 2-3 days, which isn't unheard of because of how often and how much my weight fluctuates, but I was at the end of my ropes. Not eating or sleeping because of being so sick does not generally lead to good performances on big tests or standing up at the alter as a bridesmaid. Since I had no idea what else to do, I went gluten free for the few days (I know I'm not supposed to before my tests) to see if that would help me get through the week. It was the first time in I don't know how long that I was able to eat without feeling nauseous or getting stomach cramps. I was only gluten-free for 4-5 days (hopefully not long enough to mess up any tests I'll have in the near future), and have been back on gluten since Sunday. I feel miserable. We'll just have to see how to doctor's appointment goes.
  12. Input?

    Haha I don't think it's bad advice in this instance; although, I might be a little hesitant trying it with kids. I am planning on going gluten-free as soon as I can- I've only been back on gluten since Sunday and I already feel miserable. I'm so tired of feeling unwell that I don't care if I get an actual diagnosis (there seem to be a lot of false negatives from what I can tell, so I doubt I will pay much attention to a negative result). It'd obviously be nice to have overwhelmingly positive results, but I won't know anything until I at least go in for my consultation today. I suppose I could always eat another bowl of Grape-nuts before I go in
  13. Input?

    Thanks. The doctor's office actually called today, and I can get in tomorrow for my consultation. I have all kinds of medicine (prescription heartburn medication, dicyclomine for stomach aches, Pepto Bismal, you name it), so I've been loading up on that while I load up on bread and pasta. I'm just worried at this point that they'll tell me that it's not Celiac.
  14. I was just wondering if I could get some input and opinions from people who know a little more than I do. My diagnosis has been a mystery for well over a year now, and probably much longer now that I think about it. My doctor recommended that I go see a gastroenterologist to be tested for Celiac/Coeliac; he called it sprue, but from what I understand that's just an old name for it (he said nothing about Tropical Sprue, which I think is a little different). Anyways, I guess it might be helpful to see what you think if I list some of my symptoms. For the past year, I've had excruciating abdominal pains on my right side about once a month or so. The pain lasts about two weeks and generally follows a week of vomiting once then not being able to get off the toilet due things as equally unpleasant from other ends. I ended up having a laparoscopy to look for endometriosis, and I just had a cyst. While in there, the doctor also noticed that my intestines were very swollen, alarmingly so actually. I have always gone to the bathroom rather infrequently, so we were thinking it could be IBS. I started increasing my fiber, did a colon cleanse (one of the ones prescribed before a colonoscopy), and tried to change my diet accordingly to accommodate IBS. I started having problems again, which is what led to my doctor suggesting that I be tested for Celiac. After he said that, I started noticing that most of my symptoms generally occur after I eat. I'd say I'm nauseous at least 95% of the time. I get abdominal cramps and awful heartburn as well. In fact, I had a bowl of grapenuts, thinking it would be good for the IBS, and was in tears later due to the pain in my abdomen. I got the point, again, where I could only eat a little before I'd have to rush off to the bathroom because I felt like I was going to be sick. I've had problems with my stomach all my life (I get these stomach aches where I feel like I'm going to vomit, break out into a cold sweat, and start shaking uncontrollably), so this wasn't unheard of for me to not be able to eat due to stomach aches. My weight is constantly bouncing around from overweight to under (I'm supposed to weigh 115-120, but I can be anywhere from 105-130 and have in the past year). I started doing more research since a lot of things started to make sense. I was able to start making connections to things I had no idea could be related. I suppose I could just list all of my health issues that I've had, and then since hopefully you know more than I do, you can tell me what exactly is related and what isn't. I had colic as a baby and needed predigested formula. I was diagnosed with hypoglycemia 5 years ago when I was 15, and over the next two years, I needed two sinus surgeries over the next two years due to chronic sinusitis. I have just about every GI symptom known to man: constipation, diarrhea, nausea, heartburn, vomiting, bloating, gas, cramping, you name it. I have pain in my lower back, and I've started noticing dark spots on my teeth (I generally get comments on my enamel at the dentist's office too). Have I mentioned that I am always exhausted? It doesn't matter if I get 13 hours of sleep- I'm always tired and look like I've been punched under the eyes. My great and great, great grandmothers also both had terrible stomach problems requiring them to take a laxative or have an enema every day, so I could have the hereditary factor, but we are not sure what or why they had problems. I'm only posting all of this because I've heard it can all be related to or caused by Celiac/Coeliac. Oh, I feel like I should add that for the past 4 or 5 days, I have eaten gluten free because I couldn't eat or sleep, and I had university finals and a friend's wedding to be in this week. I know I am not supposed to before I have my biopsy, but I didn't know of any other way I could try and make it through the week. I had no idea if I'd feel any better, but I just had to try something. I could start to tell an immediate difference because I could eat an entire meal and stop when I got full rather than stopping when my stomach would start to cramp and feel sick. I genuinely have felt better, not completely well, but better than I have in a while. I've gone back to eating gluten again and the heartburn and nausea are back in full force (I had a few bites of bread with dinner that was otherwise gluten free, and this is the first time I've had problems since I started eating gluten free). I don't want to mess up any tests by not eating gluten, and I'm scared I have. I am hoping that since I can't even get into the specialist until the first week of January for a consultation and I only ate gluten free for less than a week that I will be fine for the tests. Since I feel so sick after just a few bites of bread, does anyone know if I can cut back the gluten and still get good results for a test? I could use any sort of tips, if there are any, to live through the symptoms until the tests and diagnosis. I just hate to go back to feeling so sick, especially since it's the holidays and I had been feeling better. I'm still not even 100% if this is what I have, but it seems like it could be. After years of having so much wrong with me and so many problems, I think it would be great to finally know. It's even better if it could explain most if not all of my other health problems as well. Any input would be greatly appreciated, and I'm sorry this post is so long. I could just really use some sort of guidance right now.