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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 pchick

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  1. A New Language...

    [quote name='Eastender' date='Aug 27 2009, 10:14 AM']what a comeback story!! You go girl!! Did I see that you are not eating sugar? Sounds like you are eating exactly what I am. My alternative med guy just gave me a food allergy test and the gluten intolerance showed up. what do you do about the the ingredients we can't have? I don't mean the food "product", but the ingredients. Glad you are healthy![/quote] Thanks Eastender! Yeah... sugar seems to be giving me problems: not as bad as gluten... but foggy headedness and weak tired feeling ~ which I just don't like. Even Agave nectar, or lots of fruit will do this to me... so I've been using Stevia (a green powder crushed from a leaf of a bush) or baking an apple for my sweet tooth. I found a cracker recipe that rocks for something crunchy... and I've found that I can eat popcorn as long as I drink lots of water As long as I can have some snacky food I'll be okay! I use a LOT of almond meal... and I've found a book called Recipes for the Specific Carbohydrate Diet which is my food bible right now. You say you've been having a lot of the same problems...? do you suffer being overweight too? Just curious. Hope you are staying healthy too!
  2. I feel the same way... I was diagnosed "severe gluten intolerant" by my ND in July 09 so it's still fairly new to me too. And it's hard... especially the holidays! Since I found out about my intolerance, I've been really good at avoiding all gluten, and cooking and baking all my food from whole foods with lots of veggies and no sugar. I was feeling about 50% percent better overnight just from the diet change... then I was getting sick and tired a lot and found out my vitamin D and B and iron levels were far too low, so now I'm taking a bunch of different suppliments and am feeling GREAT!! My little rant of late is this: My hubby, who is very supportive in most ways, doesn't think using flour around me makes any difference. I honestly didn't know for sure myself until last week when we decided to bake a bunch of goodies to give to friends as gifts. I was so good and didn't eat any of it or touch my mouth or eyes or anything while I was baking (which is tough since I usually eat as much raw batter as finished product). I made myself a gluten-free blueberry tart and some gluten-free fudge to snack on so I wouldn't be tempted. Imagine my dismay the next day waking stiff all over and nauseous. I got through most of the day before I started vomiting (I have BAD constipation so when I get "glutened" I get real sick and bloated and then everything in my tummy goes the other way). I spent 12 hours being sick like that and now it's 3 days later and I feel like I'm 95 years old ~ all my joints are popping and hurting, my head is pounding, my face broke out, my tongue swelled up, my throat hurts, I'm super depressed, and am SO TIRED, all my muscles ache and some are cramping... right back to how I was before the diet change. I'm trying to stay positive and the one good thing that came out of all this is that my husband now takes me seriously and has trashed all flours and bread, even the goodies we made, out of the house. The thing is even though this food NEVER made me so sick before, so I'm a little surprised as well. Nothing like an experience like this to KNOW I will never intentionally eat or even be around flour and other glutens if I can help it. So good luck to everyone getting through the holidays ~ it can be so hard. Especially when people think you're making it up (like many of my "friends") I'm SO glad to have this forum to read or write on when I need a little support. I am very appreciative... THANK YOU
  3. I Never Feel Rested

    wow ~ everyday I'm learning something new here! This is a great forum. Anyway, I too am TIRED all the time.... I've been told my adrenal function is low (by my acupuncturist) and my ND told me my DHEA/Cortisol levels are unbalanced. But that doesn't really explain much. I had a very stressful/traumatic lifestyle till about 10 years ago ~ Now I've got my life somewhat together and of course, NOW my health seems to be falling apart. I'm getting a good mutli-vitamin on Monday... and I'm hoping that taking that will help in my exhaustion, light sensitivity, dizziness etc. Hopefully someday I'll be able to get on this forum and GIVE good advice instead of always NEEDING it. Thanks to all who are writing ~ it really helps
  4. sorry to hear some of you are experiencing the same thing... but I'm glad to hear I'm not the only one. I'm motivated to keep it up in the diet dept. in hopes in a few months I'll be having all sorts of energy! Keep me posted ~ let me know when you all start feeling better as far as insomnia... I stay up late because I can't fall asleep easily ~ I usually fall asleep between 2 and 4am, but once I fall asleep I'm out until 10 the next day (with a few bathroom breaks). Lately, I've also been taking naps during the day. If I know I'll get better, I can do this for a while.
  5. Thanks Amyleigh, I just ordered gluten free multi vitamins... should get here Monday. Doc put me on enzymes and probiotics, and something to facilitate iron permeability. I've been taking EmergenC's when I feel woozy... and I think that helps. I know the vitamins will help.
  6. I was wondering if anyone has gone through the same thing? My test results were negative, but my IgA count was extremely low, so they wouldn't read positive even if I had celiac for sure. current test results: Triglycerides: 480 Blood sugar: 111 borderline anemic CS1: +3 candida, +1 saprophytic fungi GP2: no parasites MB2 Total intestinal SIgA: <11 (normal range is 400-880) MB3 Intestinal lysozyme: 4 (normal is 6) MB4 Alph Anti-Chymotrypsin: <14 (normal is <60) FG1 Chymotrypsin: <3 (normal is >9) no allergy to milk, soy, egg F14 Gliadin Ab SIgA: 7 negative Because of this I went gluten free 3 weeks ago and so much is going better. My heartburn has stopped, I'm becoming more regular , I have less abdominal pain and a lot less bloated. My skin has almost cleared up completely (first time ever) and I'm thinking much more clearly so I'm having positive response to the diet. The thing is though, for the last few days I've been VERY tired again. All I want to do is sleep, it's hard to keep moving sometimes and so I've been taking too many naps (and still not feeling rested). So I'm wondering if anyone else has this? Could it be a healing response (I've been sick for a long time and now have leaky gut)? It almost feels like a detox ~ kind of a heaviness in the body and head. I don't know... maybe I was "glutened" but I don't think so. Everything else is holding fine - still regular and such, but I'm just really, really tired... and I have a strange tingling sensation all over, including my tongue. Just looking for answers or someone who is experiencing the same thing ~ I'm so confused... and I really just want to feel normal for a little while.
  7. I had this too when I was a kid ~ no one thought anything of it. I also came down with something called trenchmouth right after I had chickenpox in second grade... it lasted for 3 weeks ~ terrible thing, it was like my mouth was a big open sore. Sorry, I don't even know if I have celiacs ... I'm like you, everything I read about it is like "OMG... I have that too!! My stool samples came back negative, but was still diagnosed gluten intolerant due to extremely low levels of IgA. I'm also overweight and didn't think this could be my problem because everyone else who has it (like my sister) can't gain weight very easily at all. It's almost as sad as not being able to lose weight. Good luck with your diagnosis... and even if it doesn't come out positive, I would recommend following a gluten free diet anyway. It's helped me IMMENSELY so far.
  8. Actual Results

    Hello Blogland.... After a bunch of self research, I asked my doctor for copies of my test results so I can see exactly what he meant by "gluten intolerance". When I looked at the numbers I was VERY confused because it said my Gliadin SIgA was 7 Negative. I immediately posted a question and Korwyn from this forum responded saying that since my total IgA Serum is extremely low, it will affect the Gliadin number and may not be correct. So I guess that's good ~ for a minute I thought my doctor was crazy and gluten was NOT my enemy.... but I'm glad someone had some good info for me. The more research I do, the more and more I know this is my problem. I've read about people having the EXACT same problems as I've been dealing with... but it's such a mystery. You would think with 1 out of 100 having celiacs disease, they would routinely test for it somehow... and believe us, the patient, when we tell them we are not feeling good. Anyway here are my stool sample results: CS1: +3 candida, +1 saprophytic fungi GP2: no parasites MB2 Total intestinal SIgA: <11 (normal range is 400-880) MB3 Intestinal lysozyme: 4 (normal is 6) MB4 Alph Anti-Chymotrypsin: <14 (normal is <60) FG1 Chymotrypsin: <3 (normal is >9) no allergy to milk, soy, egg F14 Gliadin Ab SIgA: 7 negative Does anyone else out there have LOW IgA Counts??? What is your story? Anyone like this who is overweight as well? I would love to find folks who are dealing with the same thing so I can have a few people to really talk to. All my usual friends think I'm a little nutty. I tell them I can't have gluten anymore and they just say "bummer" and walk away. I could really use someone to talk to... maybe even someone from Portland OR... I feel like an alien right now... I haven't gone out to eat in almost a month ~ and that was my big social time. Now I don't know what to do with myself... time to get working on craft projects I guess. But it gets lonely, even my husband, while very helpful, doesn't really understand what I've been dealing with for soooooo Long!!! I really hope I get this all figured out and in time I'll feel normal, like a real person. Here's to hoping
  9. Thanks Korwyn! That is great information. I've been trying to decide if I should go in for a biopsy... but I don't have insurance ~ and if it comes up negative I would be a little upset for having spent so much money. And it sounds like having low serum IgA could affect the outcome. Plus dealing with it is the same... have to avoid gluten. I've been searching for answers for about 12 years... reading these posts here make me feel I'm in the right neighborhood. I just wish this all would be easier to diagnose and understand.
  10. Hi ~ I'm trying hard to figure out what's wrong with me, and what you are describing is sounding too familiar. I was "diagnosed" gluten intolerant... then did some research and now I want to know what exactly that means. I don't have $$ for biopsy to know if I have celiacs... but that doesn't matter to me as much as a mis-diagnosis. I just got copies of my lab work from my naturopath, and he said I was gluten intolerant since birth and I should avoid gluten for life. But when I look at the actual lab results ~ the F14 Giladin SIgA tested negative 7. That just doesn't sound right. My labs were as follows: CS1: +3 candida, +1 saprophytic fungi GP2: no parasites MB2 Total intestinal SIgA: <11 (normal range is 400-880) MB3 Intestinal lysozyme: 4 (normal is 6) MB4 Alph Anti-Chymotrypsin: <14 (normal is <60) FG1 Chymotrypsin: <3 (normal is >9) no allergy to milk, soy, egg F14 Gliadin Ab SIgA: 7 negative I feel 100 times better on a grain free /sugar free diet, but I want to make sure I'm not overlooking something... and I'd like to know if anyone else had low chymotrypsin levels and what that means for you. I just want to make sure this is the right diagnosis... I don't want to end up with pancreatic problems (or maybe I have them already )
  11. New Diagnosis

    Gluten free shampoo... what a concept! I have to check that out... I always have had BAD acne ~ I can't ever remember having totally clear skin. Since I've been Gluten free I'm clearing up with only a little left. Never even thought about the shampoo!!! What brand/where did you get it? I too was told I was a hypochondriac... and lazy. It's the worst feeling like everyone else is different somehow. I restricted many things from my diets as well over the years ~ but never carbs or grains. I always thought those foods were necessary to be healthy... boy was I wrong! I'm 40 now, and wish I knew about this when I was younger. Good luck on your new lifestyle and I hope you continue to feel better!
  12. Curious About Cross Contamination

    I've been reading online and on this forum about cross contamination and I'm wondering how serious I have to take this. I haven't been gluten free long enough to know if having flour in my kitchen is going to be hazardous. You see, my husband loves to bake ~ pies especially. Now I have very good will power because I really want to get better... so they are not tempting for me to be around... I won't eat any. But I'm curious if I could get "glutened" by being in the kitchen while he is making crusts ~ or kissing him after he eats some. The reason I'm wondering is because I've been feeling pretty good, but recently I've been feeling crappy again - very tired with a headache ~ and super bloated. It could just be from the exceptional heat we just experienced, or it could be I was in the kitchen while pies were being made. I feel bad enough that I've wrecked the something we've been able to enjoy together in the past (going out to eat)... I've had anxiety issues and constant nausea for years... so I can't do too much like normal people, so going for food was one thing I felt comfortable with. Now that's out. Plus I may have to ask him to give up his hobby, something he really enjoys... baking. I'm hoping I don't have to do that. He is interested in learning how to make a gluten free crust... but right now I'm having a lot of ab. pain so I'm avoiding all grains and sugars for the time being so I wouldn't eat it anyway. I have so much learning to do, I feel so overwhelmed. I wish I had a cook who could come in and just put the right food in front of my face so I don't have to think about it anymore. I'm just so sick of feeling icky... and although I'm grateful to have relief from watching my diet... I'm a little pissed my body doesn't work right.
  13. Feeling Better Than Yesterday

    I broke down and charged a new air conditioner yesterday. I was too hot, and I'm just a wimp... I swear, the heat makes me a different person. We put it in our daughter's room and put all the fish tanks in there (otherwise we'd have fish soup!) so now we have one room nice and cool to sit in when necessary. Plus it's keeping the whole house a little cooler (95 inside 104 outside). Sorry ~ this may not be the place to write about the heat... but it turns very physical for me. My intestines certainly are not fully healed yet (just started gluten-free 3 weeks ago) so I still have a lot of problems. My feet, for instance, are immobile because they are so swollen, my whole body is bloated actually... even my fingers. It's painful. Plus I've been constipated again and I've been getting that dizzy/disoriented feeling again even though I'm avoiding gluten. So I'm now wondering if it's just old toxic gluten working it's way out of my system... or if it's just a symptom of being too hot. I've double checked everything I'm eating, and since most of it is whole foods that I cook (no grains, no sugar) I really honestly don't think I'm ingesting any hidden gluten. I'm kind of bummed because I was feeling so good until this heat came and kicked my butt. I'm going to stay in my daughters room as much as possible, but I have no idea how long it will take for my feet and ankles to go back to normal, and for me to start feeling good again.
  14. Crazy Heat

    It's 12:30am and my house is down to 89 after a day of record highs (106) in Portland today. My husband is tired of hearing me complain. The heat really zaps me, and my feet are so swollen they hurt to walk on. It's making me super emotional, and I've been breaking down crying off and on all day today. Not so good at cooking when it's so hot, so I didn't eat much today and so I'm feeling a little woozy right now... and of course, I don't think I have anything in the house that is ready to eat without cooking. I need to go shopping tomorrow. At least it'll be air conditioned!! Now if I can just get some sleep...
  15. A New Language...

    Being this is my first blog entry here, I'd like to give a bit of my history so as to explain how I got here in the first place. I'm 40 now, and was just diagnosed Gluten Intolerant by my naturopath from stool samples, and bloodwork. Then I came right home and started my own research... that is how I found this space. I'm not sure if I'm a true "celiac", but I was told I was born with this. That makes sense to me too... as a kid, I was ALWAYS nauseas with lots of rumbly tummy aches. I also had very high anxiety and before any tests I would be up all night vomiting. I was always tired as a kid and always just wanted to sleep ~ my folks always told me how fat and lazy I was. Fast Forward to age 18-28 where I was kicked out of my family's house because I didn't want to be the same religion as them (long story) and ended up a homeless, drunk, drug-using gutter punk. During this time I always felt like crap, but just associated it with feeling "hung-over". I got pregnant at age 21 and proceeded to lose 35 pounds before gaining it back plus 10 lbs to be at my full pregnant weight. The whole time I was pregnant, I stayed clean ~ and I felt VERY sick. I also had kidney stones during the pregnancy. Again, I just chalked this up to being pregnant. I became very anemic to the point I was passing out in public. I also was nauseas the whole pregnancy. Then I had my daughter in 1991 ~ 3 weeks overdue, but healthy! After her birth, I mellowed on some drinking by switching from vodka to beer... this is about the time I started becoming so tired I wasn't able to do the things I needed to do, like go to work. So... I started using meth... I know, I know ~ terrible! BUT it was like my coffee ~ it wasn't to party, but to go to work and keep up with being a single mom. Of course this burned me out and when I was 28 I had a breakdown of sorts and decided I needed help. Luckily for me, that is about the time I met my future hubby. He stuck by me through quitting meth, alcohol, cigarettes and later coffee. He also helped me take care of my daughter during this time. Anyway he totally saved my butt! Soon after quitting all the crap, I started getting sick again ~ nauseas all the time, abdominal pain, ear ringing, headaches, jaw tightness, anxiety, constipation, and weight gain just to name a few. The ab pain became so bad I was sent to the sidewalk on many occasions before my hubby brought me to the ER to find out I had a HUGE gall stone. I thought this could be the answer... I was excited to have it removed. After the surgery though, I still felt icky! Now I have to say, I don't have any insurance... so to have my gall bladder removed I had to get a low-paying part time job for six months to get state insurance to cover the surgery. Since then I haven't been to a "real" doctor. Also since then I started having more symptoms that I just started chalking up to old age, being overweight, and being an ex-drug user. Some symptoms: abdominal pain in all quadrants constant low back burning pain ear ringing, headaches, face twitches constant nausea, frequent vomiting, acid reflux, BAD heartburn irregular menstral cycles joint pain and swelling especially in the feet and tongue brain fog, fuzzy vision, dizziness, disoriented feeling more and more heart palpitations, sometimes high blood pressure thyroid disfunction - going from hypo to hyper and back again high blood sugar, high triglycerides bad teeth, tongue losing taste buds in weird shapes anxiety constipation / diarrhea tired ALL THE TIME ~ couldn't get up before 10am without feeling like a truck hit me... and I don't even drink anymore! did I say nausea yet... Okay... so you get the picture... all these "symptoms" never really struck me as being abnormal... for ME. I ALWAYS felt kinda crappy. I just thought that's how people felt... and some were just good at pushing themselves. So I finally decided to see an acupuncturist in 2007 when everytime I ingested ANYTHING my guts would start cramping INTENSELY. It hurt SO bad!! I felt like they were contractions... they even came and went. This happened 3 times in a row... the third time sent me into a full blown panic attack where I couldn't hardly breathe and that freaked me out completely... so I went to get help! The acupuncture helped A LOT to make me feel less nauseas. Also, my acupuncturist is a chinese medicinal herbalist and made me a tea to drink that really helps. But after 2 years of seeing him, I realized he is just making the symptoms better ~ that I need to find out what's going on in my belly. That's when I went to the ND/MD and had a bunch of tests taken and found out what I had! Now it makes all the sense in the world. Some people would be bummed to have to change their diet so drastically, but not me... I'm SO excited to see what a normal person feels like. I've been gluten free almost 2 weeks and feel PHENOMENALLY BETTER!! I already have more energy than when I was on speed!! (I can't hardly believe it myself) my nausea is clearing too ~ I've only felt it twice in two weeks!!!!! Heartburn is basically non-existant (except when I have any sugar or grain). Plus, the most amazing thing of all is I lost 10 pounds! For someone who has tried every diet plan under the sun with no effect, this is just amazing! So you could say: I'm a believer!!! I'm gonna be gluten free for life and I know I will LOVE it!! I have to heal my small intestines first (leaky gut), then I can add some other grains back into my diet, but for now I'm eating lots of fish, chicken, eggs, green leafy veggies, other veggies, some cheese, and some fruit and nuts. I haven't been diagnosed with celiac with a biopsy, but from what I can tell, being gluten intolerant for life is pretty much the same thing. You can't have any gluten. So I hope I'm in the right place to write. I really needed to vent ~ I feel like I just discovered gold and can't wait to tell everyone. Unfortunately, most people don't have a clue what this is about... so maybe I'll just keep it to myself Thanks to all who have written posts on the forum, I gleaned a bunch of great info from there and am happy to be here where people talk my new language!!