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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?  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


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About JoyMurphy

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  1. steph, I didn't grind it myself...I stayed away from it completely until the past month. It was bobs red mill. I just remember even on the diet, I was having more severe neuro symptoms...they were bad the past few days, along with the stomach issues...It may be a huge coincidence...but it's very suspicious to me. when i was so sick a few years back...I pretty much existed on rice.... I don't even think I want to play around with it at this point. I have eliminated it at least until I see the nutritionist on Monday. I feel ok today. Not great, but not too bad..... The possitive things that came out of the fasano have now seemed to have disappeared slowly. I'm up more at night once more... I'm dying to see what they find when they redo the endoscopy in Jan... My dad brought up an interesting point. Once upon a time, wheat was a staple in my diet, then when that was gone, rice became a staple... I stay away from anything that says oat....gluten-free or not. I react badly to gluten-free oats....sick as a dog and a total personality change...whooooaaaa...bad news
  2. colleen, I have been tested for so many AIs. Nothing has come up possitive...I actually had a Rhuemy tell me that my high ANA meant nothing. That it was a phenomenon. I am a 640.....it has dropped to 320 but has gone back up and never goes below. I don't believe that it means nothing. If I was healthy and it was high, I could see that....but there is something going on in the connective tissues. I also apparently have a history of MGUS, which I was not aware of. My IGM was high, though it had gone down a bit, and the hematologist said i was clear of lymphoma and multiple myeloma...but apparently this is premyeloma? I saw that on my file...I had no idea. Then one dr said, just wait, nothing has come out in the blood yet. So when do we wait until we can't wait anymore? This is why at this point I'm looking at the other foods. Gluten exposures for me are killer, they last 5 weeks and I am on the couch in severe pain bone, neuro symtoms galore. The gastro symptoms subside after a few days. So if gluten does this to me, there has to be an off chance that another food/grain could react as well? For me, it may just be wishful thinking. I know the dr.s all think it's psychosomatic or a conversion disorder. But let me tell you, if I wasn't so sick, I'd be having the time of my life right now. I have so many plans of things I want to do, now my kids are a little older. If this body wouldn't keep holding me back...it would be all good. argh!!!
  3. kareng I ate the rice cakes almost two years ago when I was severely ill. I haven't touched them since then. On the Fasano I ate only 100% natural foods, fruits and vegtables. Nothing with a wrapper, nothing touched by man. The one thing that increased was rice...it became the main staple. The rice was plain and prepared in the rice cooker with olive oil and salt, the other thing that was increased were eggs. I ate eggs for breakfast everyday. I followed the fasano 100% without cheating. Dr. Fasano himself actually allowed an occasional glass of organic red wine...when i asked, he considered it to be 100% fruit juice. Some things got better on the fasano. Some things got worse. I almost feel like I am taking big steps backwards, joint pain is coming back as well. I'm scared to death to return to where I was. I see Melinda Dennis, my nutritionist on Monday. I'm hoping she can shed some light. I have been afraid of loosing things for good, but at this point I will do anything to feel better. I of course questioned nightshades and salycitics as well. When I started charting , I all of a sudden started to put things back together....and this past week, I had added more rice products (rice flour, rice pasta, actually a piece of gluten-free banana bread, with a rice based flour. And i felt awful. Last week was decent, but I didn't have any rice at all. Like I said, I just started putting the pieces together. And rice seems to be the common factor. After the fasano, I stayed away from most packaged foods, I felt better without...though on occasion, maybe once a month I would eat gluten free pasta, but rarely. I found that when I would have a bite of something I baked, I felt sick. So I stay away from it as much as possible. I bake gluten-free treats for my children with celiacs as well. I don't give them packaged gluten-free foods. I make the bread when I can etc. Or else there is no bread. But I rather my food with lettuce anyways. But when I bake I inhale the rice flour etc b/c it is so fine and airborne. Im hoping the nutritionist will take all that i say and have that AHA moment and know exactly what is going on. It would make sence that my body is at war still and is now attacking other things. My ANA is still extremely high as well. I just want to be able to function. To actually feel like a human. To act and feel 40, not 80. I want to enjoy life not watch it slip by me. I have looked at the whole 30, and the autoimmune protocol. I am sure some version of this is headed my way. Funny, I was always afraid of that. Now, bring it on....but don't take my pistachios away ....ok, you can take those too....just please someone figure this out!
  4. I have been trying to put all the pieces together since my diagnosis 1.5 yrs ago. I have been having lingering neuro symptoms that no one can figure out. I have been checked for seizures, all other autoimmunes etc...and of course, my file at the hospital needs it's own zip code. I know there is something else wrong....could it still be the damage from the celiac? Of course, but in my gut (no pun intended) I believe it is more. I have been logging lately, and it came to me this morning. OMG, could it be RICE? I am extremely sensitive to gluten exposure. I react insanely to gluten-free oats. The celiac doc put me on the Fasano diet. I did well, and there was some improvement with sleeping through the night. Neuro symptoms were still present, and to me, seemed worse. My brain would have a fluttering sensation at times, extreme dizziness/ lightheadedness, weakness to name a few symptoms (bone pain, back pain, arm pain etc) odd episodes where I could barely walk or speak from weakness. My psoriasis has been very angry lately What did I rely heavily on during the Fasano? RICE. The week I was away at the cottage, what did I eat for almost 2 meals a day? RICE. That was probably my worst week. The past few days, the dizziness has returned...I had chicken coated in a heavy brown rice flour mix, and made banana bread from a rice flour blend (which I generally don't eat). However, I cannot really find a link with rice and neuro issues. So maybe I am just grasping at straws here. But it seems to be a big coincidence. Also, when I was extremely ill before my dx, I could barely eat or keep food in. My neuro symptoms were off the charts then. I lived on rice cakes......sometimes twice a day....
  5. I am obsessed with their lipsticks. they always look so good! the hibiscus grew on me.....it's dramatic
  6. I love nuts.com They are so prompt! I order and it seems like I turn around and it's there! mmmm pistachios! And they have gluten free almond paste for holiday baking.... can never find that anywhere...last year I had to make it myself
  7. oh, I have said some very inappropriate things.....Oh my.....afterwards I just think about it, and think....omg what did I do? It's just very odd. The frustrating thing with this disease is there is no certainty...no exact manual...no one path.....we all have different and overlapping symptoms and severity's. support groups like this keep me grounded when I am at my whits end. But it comes down to patience....in healing, in learning how your body reacts, in trying to figure out if anything else is going on, ontop of the celiacs. Unfortunately, I am not a very patient person. Living in a world where many people don't believe Celiac to be a "real" disease doesn't help either. I'm having a hard time adjusting to the not eating out...my plan is to get to the holiday party that I plan every year for the family business and then call it quits for the next 4 months. I don't know if that will be the answer, but I know it can only help. Just think how hard it is upon first going gluten free, how easy cc can happen, how easy it is for anyone around us to take that pita chip from accross the room and drag it straight through the gluten free guacamole that you slaved over...(yes, I'm still bitter over that one ). Imagine in a busy restaurant. And anyone who has ever been in the restaurant business to whatever degree, knows what it's like in the kitchen on any given night even with the most well meaning of chefs.....In my experience it was ..."they want WHAT?" and you ducked and ran out of the kitchen...lol.... Good luck!
  8. Steph, unfortunately for me, I bought my truck load of glutenberg 2 weeks before they put me on the Fasano. Sadly, it has all sat there in the fridge alone. I came to the end of the Fasano a few months ago. Since then I have been very careful about bringing things back. I have though enjoyed a couple glutenbergs since then, with no problems. Sadly for the Glutenberg folks, I tend to stick with red wine or tequila when I do have a drink.
  9. daura is delicious but it gave me an instant headache...too many ppm.
  10. you can get glutenberg in boston. New England def has it. Other areas not so much yet. Not a fan of the American Pale Ale, but I don't like IPA and the red...it;s an aquired taste....but the Blonde....YUM!!!!!!! And a cool oil can too! I drove from Plymouth to Stoneham the day they got it in and cleared them out. Now a lot of places have it. Some restaurants carry it too. I know there is a restaurant in JP that had a tasting dinner one night.
  11. hi, you don't have diarrhea, just constipation? That still can be a sign. I had diarrhea, bad...but my daughters, both of them had severe constipation. The one with the less severe symptoms tested high on the blood test and had a lot of damage in the endoscopy. The one with the worse stomach problems tested fine on both, but has the gene. They told me to test her every year. I hated seeing her in pain, so I pulled her off gluten completely. It is never good to stop gluten before testing. I did and my diagnosis took a while. My daughters odds of having a possitive test result in the future are pretty high...I couldn't take her screaming in pain on the toilet, and not being able to walk down the street bc the pain was so intense. That was it, no more. I looked at her in the hotel room one day, in pain and said, that's it! She agreed. Another thing my other daughter had, was warts. Those went away after her dx and going gluten-free. Warts are an infection that the celiacs allowed to take part of her body. When the gluten was removed, her body was able to fight off the warts. Not many people talk about that...but I did read it somewhere, and then I watched it in my own daughter. good luck!
  12. I have actually been gluten-free for one year and nine months, but who's counting. I was diagnosed one year and five months ago.... I have recovered to some extent. I can function better. But I am not the same person I was. I am hoping that will come in time, or if there is something else wrong, some doc will figure it out....I have a lot of neuro symptoms. I couldn't put words together, I had severe fatigue and memory loss, I had poor word recall and couldn't have a coherant conversation. I had a lot of GI symptoms as well. The Neuro stuff hung on. I was so weak I couldn't walk without assistance. Now I am having these weak and dizziness spells, but not constantly like they were before. They come maybe 3/4 times a month? They couldn't catch them on eeg, but that's bc I had one on a sunday, they put the eeg on that tues, and took it off on fri. I didn't have an episode until the following fri. Frustrating. I have looked at the whole anxiety thing. I just don't think for me that is the case. I have had anxiety before, It feels differently inside to me. Anxiety I have felt is almost a racing feeling, this is like living in slow motion. Like being a wind up toy that wound down. I have had these episodes in different places, with different people. I don't know. Anything is possible. I am currently trying to journal everything I do an eat, where I go and who I am with. I had a few accidental glutenings. So it is hard to understand what is from glutening and what is something else or maybe just the original damage..... I did feel better when the celiac doc told me that he has a few patients that feel that fluttering sensation in the brain. The other docs are ready to ship me off to psych
  13. I was worried about the coffee too. I know I am supper addicted to it, and I have actually increased the amount of coffee I drink. Good lord, there goes all the fun! TBH I would rather do things I can control rather than trying different types of meds.
  14. I had a 55 lb weight loss in about 2+ months. I was losing a lb a day. Previously I had to be on weight watchers to loose anything. I was fit, did zumba and weight training almost every day. At my worst I couldn't lift the brush to brush my daughters hair. I would force myself to eat every day. All I could manage was a rice cake w/ PB, a small piece of meat and maybe a bite of sweet potato or rice.....These were foods I wouldn't react to. Otherwise, food went through me like water, or came back up accompanied by doublling over pain. I also felt like I was going to faint when I stood. At my worst I was in a wheel chair to get around. Get the tests done. Good luck... Have them check your ANA too. Those are nuclear antibodies...just to be sure it's not a rheumatological issue....
  15. steph, I have found this to be true. Since getting so sick, I have been forced to be more creative in my cooking. I have always loved to cook. Always a cook, not really a baker....Now I'm a great baker too? My cooking has definitely evolved. Even with the Fasano, it forced me to be more and more creative. Some of my best recipes came out of cooking with fresh ingredients. Pan roasted chicken with roasted squash and apples, with rosemary and sage...not so hard to take. It got to the point where when I went to the restaurants, I was turning my nose up at the food, b/c what I made at home was better. But you are right it is a convenience thing....I need to get better at prepping frozen casseroles and such. Which I did last year. I was watching the pioneer woman on the food network, and she was doing prep work for her freezer meals. I need to plan a day for that. Even making grilled ckn breasts to freeze for my kids lunch boxes. This year I expanded my garden by double the size, went all organic. Canned 10 quarts of tomato sauce. Which I always make my own, but I used canned tomatoes. Now I grew them all. I make all my own broth. The nutritionist had me drinking 2 cups a day last year. I started up again. She told me that would help repair the brain. I use the rest to cook with. It's funny, I had more energy 6 months ago than I do now. That is the scary part to me. I feel like I am slowly slipping backwards. When I do have a day where I feel pretty good, I pack it with as many things as I can do. And then I wind up in total exhaustion.