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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.

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  1. Celiac distress

    Hello everyone,   Last week I was diagnosed with celiac and I have it so bad I'm a rare type and condition it seems only 1 in 10% show what I have my test came back positive via 100% match  to have it and genetically carry it......I don't understand that you can eat whatever you want one day then bam all the sudden yo u have this auto immune disease I'm so new to this o don't know what I can have and can't have I'm lost my reaction resulted in a very massive way and landed me in the hospital .....extreme vomiting,  extreme pain, diarrhea, and besides the massive tiredness rash on body I can go on but the  worst and most scares is blacking out fainting I drove home and I don't remember doing it I fainted trying to get key in door and busted my face up no alcohol period I want to know should I be scoped before I'm completely gluten free or do it now so they can see the damage?
  2. Hi, I'm new here and a little unsure what to say so I'll just go ahead.  For 22 years I've been eating yummy bread and breaded chicken strips and every other gluten containing food under the sun! I have often but not always suffered from what I call a "food baby" after eating, I thought I was just very full and sometimes after eating out I'd have to sit for half an hour before I could move because I felt so full, even if I didn't eat so much. I've recently had some stresses in my life, my mum was diagnosed with cancer, I am in the final year of my degree and my boyfriend decided he wanted a military career and we travelled from the UK to Canada in order for him to have an operation. Whilst we were there he turned 21 and so we went to New York to celebrate, after a 13 hour train journey we reached the hotel where we were on the 30th floor, it was late so we ordered pizza and within half an hour of eating a slice my appetite had vanished and I went very dizzy and lightheaded and started to feel like I would be sick and faint, we thought it could be motion sickness due to being on the 30th floor and possibly exhaustion from the journey, I was also feeling very anxious and panicky throughout. The next day we were moved down to the 4th floor and that seemed to help, however the day after that we went to planet Hollywood for dinner (burger and fries) where my appetite failed me and I got very dizzy, not wanting to spoil the night I kept quiet thinking it might pass. We then went on to the theatre to watch a show, where I got worse, thought I was going to be sick, cramped up temperature was up and down and I was shaking, my heart rate was very high. In the end an ambulance was called and I was taken into hospital where they could not understand what was going on, eventually we put it down to an allergy to the ibuprofen in America, though I have never had an issue with the ibuprofen in the UK.  Since then I have been unwell on and off and quite suddenly I began to feel sick after eating every meal, I get severe nausea, stomach cramps and bloating and my concentration completely goes, I'll be lightheaded and very irritable with bad gas coming in tiny gurgling burps (I can't burp properly 😂). I also have quite bad bowel movements which can either be loose or completely constipated and sometimes it's almost normal but covered in a clear slime. (Not nice I know, sorry!)  On Christmas eve I ate some cheese and got a few little cramps, on Christmas day I spent the day in bed feeling dizzy and sick and bloated and generally unwell, I put it down to the cheese, however it was a family buffet with lots of opportunity for gluten contamination and I have been avoiding gluten since my blood test 2 weeks ago. I've had a blood test for coeliac and am still awaiting the results, I am also considering lactose intolerance as I apparently had that as a baby. I feel totally fed up not knowing what's doing this to me, my mum and dad seem rather in denial and roll their eyes or dismiss me when I mention research that I have done and my ideas on what could be causing me to feel this way, they have however been buying me gluten free foods.  So I was wondering what you think? You are obviously a lot more knowledgeable on coeliac and gluten intolerance than me and I'd really appreciate any advice or help you can give me. I feel quite alone knowing that nobody in my family other than a second cousin who we rarely see can understand how I'm feeling (if it is coeliac) and I feel like I want to talk about it, but I can tell people are getting bored or just don't want to hear it or consider it as a possibility. Sorry for the long rant! I hope you've all had a good Christmas 😊  
  3. I'm new to this site but have been using a lot lately trying to solve the mystery of my illness. I've been sick for over 4 years. I've had stomach problems my whole life but 4 years ago I woke up one morning sicker than I've ever been in my life and all these years since I have not fully better. I was tested for everything the doctor could think of, I went for tests twice a week for two months. But I don't remember them ever testing me for Celiac Disease or gluten intolerance, or even mentioning it's existence. The doctor told me that the stomach problems were being caused by anxiety and he referred me to a psychiatrist. I was put on Lamictal, Remeron, and Ativan and they helped with the anxiety, but not with the stomach problems. Going back to the doctor they ran more tests which all came back negative, and they said I may have Irritable Bowel Syndrome. The symptoms I have are much more severe than any IBS sufferer I can think of. I gave up on doctors and decided to try a gluten free diet to see what would happen. It definitely changed the way I'd been feeling, but I can't tell if it's better or worse. For 4 months after going gluten free I got worse. Much worse. So I did some research on gluten free food and realized half the stuff I'd been eating wasn't gluten free. I also have lactose intolerance, so that makes things more difficult food-wise. I also realized that I needed a separate toaster and microwave and cookware, etc. to prevent cross-contamination. So I've been truly gluten free for only a month or two. But then a few weeks ago I ate some candy I assumed was gluten free but was not. I lost 20 pounds in 4 days and I was so sick I couldn't do anything but sit and watch TV. So sick I couldn't sleep for two nights straight. I've been better from that gluten poisoning for a couple weeks but every so often I get a wave of symptoms that lasts a couple of hours then goes away. The other thing I noticed when I went gluten-free is that I don't get sick immediately after eating anymore (most of the time anyway). I can eat a meal and not feel horrible afterward. The downside is that since I've gone gluten free I've woken up in the morning and started dry heaving a few times. That never happened before I went gluten-free. I also can't seem to get rid of a constant feeling of hunger that sometimes gets to the point of making me feel ill. I don't know if all these symptoms are normal, but it can't all be caused by anxiety either. No doctor can find anything wrong with me in the past 4 years. The gluten-free diet is my last hope of getting better. I'd love to hear suggestions, comments, shared experiences. Wondering if anyone with Celiac has experienced these problems. Any advice is much appreciated! Thanks!
  4. One of the things that sent me to the doctor in search of answers was a constant pain on my left side in the lower ribs. It's there all the time. 13 days Gluten-Free and it's still there. I go to bed with a heating pad on it every night. Does or has anyone else had it? Is it related to celiac? Does it get better?
  5. Dear people of,   (sorry for my English, not a native speaker)   I realize you might think I should not annoy with my problem here and that I am an idiot, but I really feel SO painful and desperate and don´t have anything left (even the energy to do anything else), so I am giving it last chance and posting here my ´calling-for-help´ letter.   I do not know what I should do because noone cares since I am a rare medical case and I think that only those people who experienced immunology-related hell in their lives can truly imagine what it feels like and would understand I am not making things up.   Can you recall the anxious feeling following your accidental glutening? That feeling ´oh my fucking God, somebody has poisoned me!´? ..That several days lasting brain fog and fatigue and not being able to do ANYTHING except from lying in your bed and suffering?..And all the pain?.. ..well, that´s exactly what I have been dealing with for 4 fucking months (!) now...and can´t anymore..the pain is destroying me and I am going to kill myself in the next few days if nobody is going to help me. Because this is torture.. I want my life back so badly. Physicians in my country won´t help me, saying ´externally you look just fine, there is nothing wrong´...well, can´t fight this..   My story below: (Thank you very much for reading it, I appreciate it. If you knew about anything or anyone who could help me, please, let me know.) Thank you for reading this. Any help is appreciated. Sorry for the mistakes, I am not a native speaker.) I needmedical help. And I need it soon.I do realize I am going to sound crazy, but I am not a psycho. I do have a problem and do know exactly its cause. My immune system is slowly killing me. Foreign substance in my body is causing me hell. Being desperate becuase no doctor in my country that I ́ve contacted has been willing to help me. Because my problem might be quite rare (or maybe not many sick people realize why they feel sick with no  ́objective ́ sign) and they think I am just making things up (why would anyone do that?!). I underwent a surgery  5 weeks ago. It was an esthetic surgery. I have never had ambitions to look  ́perfect ́.  Because I think  ́looking great = feeling healthy ́. So it was  ́well-founded ́, trust me. (No, I do not have breast implants.And I have a poodle-like nose thatI don ́t want to be operated because I like it.) I am 25 years old, medical student. I do not feel the need to write down here my personal drama so that someone could say they feel for me or to hear what an unfair world we live in. No way. I am going to write down the following sentences just to finally convince someone of the fact I do have an organic problem.  I haven ́t lived much yet. For 24,5 yearsI felt horrible.I used to feel so tired that even walking round the house was like a marathon to me. I felt exhausted and depressed 24/7. As a child I didn ́t have many friends. People around me thought I was  ́the weird girl ́. I did feel the difference myself. I was very sorry that I could not enjoy the usual things in life like other people did. I felt no joy. No passion. I felt like a machine only. Pure depression.I did not know why I had to felt that way. I started tobelieve I was just born that way and had to either suffer for the rest of my life or end it up myself (yes, I DID have these feeling so many times in the past before I found out myself what my problem is, so that I also visited a psychiatrist myself –after months of taking the ADs, it was only worse)...I was teenage, with no friends, no positive feelings and no energy. The times my classmates were partying outside, I was at home, staying in bed, thinking I should better die. Then, one day, I  realized the only moments I feel at least a little bit better, is when I am starving for someperiod oftime. Thisallstarted up the whole way to  ́oh my God, oh my God, I DON ́T have to die after all, I can feel great too! ́ feeling. I am convinced I have celiac diseaseand that not treating it for 24,5 years caused I am allergic to pretty much everything (except fromthefoods included inmy diet), probably due to leaky gut (?). My grandmother had the same feelings and the same problem and I think so has my mother. Unfortunately, having the blood test done, my immunologist said my antibodies are  ́quite low to have celiac ́ and that I don ́t even have diarrhea, so that I need to go away and stop annoy. Noone cared I did have neurological symptoms and my abdomen looked like if I was expecting quintuplet. So I told myself I need to help myself. It was a long journey until I found out not only the gluten is my problem. Once I eliminatedall the food substances that were giving me problems, I started to feel like a  ́normal ́ healthy person, being just happy to be, having energy and so on. After 24,5 years! What a feeling! I can remember the tears of luck.. So yes –I do know I have allergies (I do have the typical allergic reaction followed by almost all the vasodilatation-linkedsymptoms), but I do not have it proved in the lab. (Because there was no need for me to do that once I found out what the problem was and also because I might get the same falsely negative results as many people before and no doctor in the future would trust meI really do have problems afterseeing that). And there are not many physicians (at least inmy country) who believe  a person might have reactions tooils as well (safflower oil and castor oil for me). But give me a lipstick with safflower oil in it and I ́ll show you how it sets me offfor 3 days (my classmates and people around me might tell you about...) lab-tests needed  So now to the problem I have. I can feel my body is strongly fighting the inner  ́absorable ́ stitches that were put induring the surgery. I think I am allergic to them (after all that stuff I have had to go through, I know perfectly what my body tells me). Or simply let ́s just say my immune system has a great problem with them (with the polyglycolic acid maybe? Or maybe even the metabolics of it?). I know they are supposed to dissolve on their own in months, but  1)I know many people have problems with stitches not dissolved properly even after years. 2)I simply can not wait with reaction like this.And it is NOT about being mentally hypersensitive! This is torture.I am only lying in my bed, sweating even when it is cold, having the most horrible brain-fog, feeling like Im going to faint all the time..etc.Even my friends are scared seeing what is going on.2 days ago my flatmate even had to call me an ambulance because I had difficulty breathing and one of my pupil was twice the size of the other one. I swear I felt (like so many times in the pastin the  ́before ́ period) like if I was going to die. And you know, when you are experiencing this physicall problem, you simply arenervous –which only leads the doctors to say  ́it ́s just you being way too sensitive mentally ́ -hell, it is the other way around. And once they write you into the documents your blood pressure was low, but not low enough, you are entering the viscious circle of nobody believing you..3)There are other people out there who had problems similar to mine.My surgeon refuses to get the stitches out (which is understandable since externally my wounds do not look thatbad) unless I have a document from a laboratory proving I have reaction to the material. The problem is I haven ́t found any workplace testing this! And my condition really is unbearable and I don ́t know what to do now. I am also scared to death once they would reopen me, I might be sensitive to the anesthesia, as it would be the second contact with it..(I also need to find someone who can make it safe, please –someone with knowledge and experience in this field.)(And yes, I DID have reaction immediately after the material contacted my body because I will remember for the rest of my life that as I came from anesthesia, I thought I was going to die. I could not breathe, I could not speak well, my brain (head felt) like swelled.I know it is usual to feel  ́just off ́ after anesthesia, which is understandable, but this was not this case!I was SO scared. Of course, the personal told me not to be overacting and to stop annoy the staff because  ́my blood pressure was  just fine ́ -well, if you have to fight allergies for 24 years, your body does develop some compensatory mechanism that is trying to keep you alive. -I think this combined with all the fluids I got during the surgery kept my blood pressure  ́just fine ́. But I DO know I had severe allergic reaction. From that moment I am feeling bad.I am not blaming the doctors, of course. I just need help.I was told I have Safil and Polysorb material in my body. But who knows if it is not also anything else. The surgeon was not that sure. As for surgery itself, he is a great surgeon. But for any other field of medicine, as for me, he just would not care. Saying  ́it is only in your head ́ to anything you say. If all the physicians you meet tell you things like  ́well, ok, let ́s say things like thesemight happen, but it is only like in about 3% people ́, there is no way to convince them of the fact YOU might also unfortunately bethe part ofthat 3%. Well, as for the genetic-jackpotI won, it was not my decision..Before the surgery, I used to be a happy, always smiling,nice girl with lots of energy and ambitions. I LOVE life. I want to help other people and just enjoy that great feeling of  ́happy to be alive ́ that I used to feel. But now I feel like dead already. I do not even have the energy to cook my dinner or simply to do anything except from staying in bed and staring to the ceiling. Like if someone poisoned me.I have some great friendswho know who I really am (and thus these people know this is just real).But I know I am not going to hang on like this much longer. Because I feel so horrible. I do not want to have to hurt myself but I can ́t simply ́live ́ this way any longer.And you know, I already feel like dead.This is like being trapped. And I can ́t anymore.Please, someone help me and get the stitches out of me. I am willing to do anything for that so I am able to save my life. As a future physician/scientist, I can help many people. And I want to help so much. But first I need to be helped. I still hope there are some people left in the world who are not judging just by  ́only the things and feelings that I ́ve experienced are those that might be real ́. I feel so sad about the fact there are so many people out there who are called  ́psychos ́ or just feel horrible just because of cause similar to mine. We need to do something about this.If you know anyone who could help me, please, let me know!As a med student, I really do not have any money left, but I will get them somewhere to save myself. So money is not the main problem. Please, do not let me suffer. Thank you very much M
  6. hello- I'm looking for help here! For the past 15 months my now 5 yr old has suffered from severe abdominal pain, bloating and diarrhea . It has gotten so severe in the past few months he has been hospitalized 3x needing an NG tube and rectal  tube to decompress his intestines from all the air. At first we thought it was a constipation issue but he only ever had loose foul smelling his last hoapital  discharge I was instructed to insert a rectal tube every 6 hours and flush with saline to keep his bowels from distending with air! We did that for 3 months straight?! What torture for my poor boy. And X-rays confirmed there was no blockage. He has had test after test , X-rays, MRI,CT, EGD and biopsy twice , colonoscopy, ultrasounds and even cystic fibrosis testing. Only thing that has shown up in blood work is anemia and elevated c-r protein. His GI dr is stumped ( even after conferring with colleagues cannot figure this out) and says she has never seen a kid so severe, even with celiac( although he has tested negative) . Now here's the interesting thing- I. Put him on a gluten-free diet after the testing  was all done and within 2 weeks he started having somewhat formed BMs on his own with no laxatives or suppositories . His bloating disappeared and his behavior improved ( he is also mildly autistic) . So even though the dr was doubtful gluten could be a problem she is saying maybe it's an intolerance. Anyone have a kiddo with such a severe non- celiac intolerance?  
  7. Hey everybody, so I have a friend (female, 20 years old) who has NOT been diagnosed with celiac and does not think she is allergic to wheat but is having severe tummy issues. symptoms and factors: shooting stomach pain immediately after eating anything nausea and pain for almost 40 minutes after eating unintentional weight loss (30 pounds in 1 month) high stress environment on medicine from doctor (to coat her stomach throughout the day) long term, 8 months... Whenever she eats anything, for almost 8 months now, she experiences nauseating shooting pains that go through her stomach immediately whenever she eats anything. Her doctor put her on a medicine that coats her stomach throughout the day, so she takes it every morning before she eats, and it is the only way she is currenty able to eat. Since this began she unintentionally lost 30 pounds in a month and continues to loose weight. She is in college and taking many hard classes so stress could be a factor. She has not had a scope to look at her stomach to check for ulcers because she can't afford it right now. I got her to start trying kefir and see if that helps. Does anyone have any ideas or suggestions!? It would be super appreciated, any imput is really awesome! Thank you!!!!
  8. Since being diagnosed with celiac disease, I have read so many accounts of non-supportive family and friends. I had never experienced it first hand though. I thought I understood and could   sympathize with others in this position. I was wrong!   I have two sisters from my father's side of the family. I have seen them maybe 5 times in the past 25 years. Most of our interaction has been over facebook and such things. We really wanted to spend some time building a stronger relationship. We decided to go on vacation. They came my direction from ohio and florida. We made plans for a trip even farther west than where I live to Cali. As we planned I was very clear  " I must have a room with a kitchenette." I will bring all my own pots and pans and such things, but I will NEED to cook my meals at the room or have a cooler of things that I can eat with us. I am very sensitive and have not had great success in eating out. My house and car are COMPLETELY gluten-free. " I was trying to be understanding and even said " You two can take my car if you want to eat out. I know that for a lot of people that is a big part of vacation." They seemed all on board and excited about saving money by eating in some etc..    Then came the airport pick-up. We stop for snacks. My sister picks up chex mix with cheez-it and pretzels in it. I was like oh you can't eat that in my car or in my house. I then pointed out the lays and the ruffles and fritos, cheetos etc.... all gluten-free snack options. Oh I love lays chips and fritos etc... But I want these. Ok you can eat them on my porch. REALLY? yes really.   . I made Lemon poppy seed muffins and blueberry muffins ( both of which they requested the flavors) that I have served to people not gluten-free that never knew and ate multiple muffins. for the car ride. I even found a completely gluten-free resteraunt in Hollywood for us to try . Only the Absolute ATTITUDE  I got about having to go out of the way and WASTE 20 extra minutes to go there was so Overwhelming I allowed myself to be cowed into once again trying to eat out in a reteraunt they wanted to go to. 30 minutes of them picking things like Pizza parlors that I had to say I cannot even attempt to eat there I finally exploded and was like    " I told you not to worry about me just pick a place to eat and I will go on my own and find something I can eat!" ( we were walking in an open air market area) They looked at me like I was so crazy and mean for getting upset when they were trying so hard. So they went and got two whole pizzas and I went and found a sushi place. (This was usually a good option for me) After about 45 minutes I got a little nauseous and a lot of GERD ( my first symptoms of being glutened). The next day we ended up at a taping. Again we couldn't bring our own food in so I eneded up eating a snack bag of fritos while they ate burgers, fries and wraps. No biggy. It was noones fault. We didn't know.  after the taping I NEEDED food. I wanted to stop at a gas staion to warm up my hamburger ( I had brought pre-cooked burgers and buns) only they were not hunger and just wwanted to get to the next hotel that was 2 hrs away.    Now I have to wait 2 more hours. We get tot he hotel I want to get to the grocery and make some food I feel safe eating. Oh no they want to go to the beach. I put my foot down. I am going I need to eat. They go with me. After I get stomping and slammed doors because they missed the sunset on the beach because I " rolled  eyes" just had to go to the store right then.   I look over and on the table is a crumpled crumby cookie exploded all over the food preparation area. I almost cried.    When I finally tried to open a conversation I got "We washed our hands and tried to keep our food away from you. Its our vacation and we are not gluten-free so we should not have to deal with your problems on our vacation!"   Really, you cant eat your cookie outside or your pie in the restaurant. Those things were so dang hard so that I could enjoy a pain free healthy vacation.   Anyway I decided to come home a lone and they could not have to deal with my illness interfering with their need for cookies and pies. Now they are calling me crazy and told me I don't deserve to breathe because I left them there.     I feel somewhat guilty about that, but they were sneaking their crumbly cookies and cheez its in my car. CRUMBS everywhere that I put my groceries! UGHHH. They didn't want to respect my property or my health or make any sacrifice to have me with them. I gave them what they wanted. To bad they now have a new set of issues to deal with like renting a car ( both are capable of for sure)  and now finding lodging for the next 7 days.    They also have lost any opportunity to have any relationship with me.    To those of you that have to deal with this sort of insensitivity and lack of concern on a regular basis..... My prayers and thoughts and love to you all.          
  9. Hello--    I've been gluten free for almost 3 years ago up till about a week and a half ago.  I'm trying to figure out whether to continue eating gluten to be officially tested.    I originally went gluten free after 3 years of antibiotics for lyme disease. I had heard that stopping gluten products might stop my symptoms and after going gluten free my symptoms did stop.  The problem is, I'm not sure if my symptoms were actually lyme disease or caused by celiac.    My main symptoms with lyme (when I was not on antibiotics) were extreme fatigue, lots of brain fog, anxiety and rage, and all over disseminated body pain, electric shock like feelings running down my legs and muscle tics. My doc always said my symptoms were atypical of lyme, but since the antibiotics were helping he kept me on them.  Whenever I got off the antibiotics, symptoms would resume (thus the lengthy course of antibiotics).   In 2011/2012 my lyme doc stopped taking medical insurance, and I was starting to get worried about all those antibiotics. I discovered that some chronic lyme sufferers went off the gluten and managed to remain symptom free.  I went gluten free and my symptoms gradually stopped and so did a lifetime of a bloated belly.  In the beginning, I would often accidentally glutenize myself and be hit quickly with almost a full day of utter exhaustion, brain fog, irritation and all over body pain. This made me very serious about never eating gluten. Gradually, I stopped accidentally glutening myself and have felt very healthy.   However, as anyone who tries to stay gluten free knows, 3 years of not eating at restaurants and packing my own food everyday grows tedious and sometimes almost oppressive.   A year ago, I tried two pieces of pizza to see if I’d been gluten free long enough—I spent the next day in such a brain fog that I almost felt drunk.  So, I resumed the gluten free diet.  About a week and a half ago, I was at a work function at a fancy schmancy restaurant and hadn’t eaten enough food ahead of time, and I finally broke and had a gorgeous piece of French bread.    I didn’t immediately explode as I thought I might.  I woke up the next day brain intact, so I ate some more gluten products the next day.   My mouth felt awesome.  In fact, I felt awesome till about 2 days later.  Brain fog has resumed, and I just feel spacy. The all over disseminated body pain has begun again…the exhaustion is creeping back.  Does this sound like celiac? Should I continue to the gluten challenge?  Different websites state different amounts of time we have to ingest gluten… I see one study that states I’d have to eat it for almost 12 weeks! And then another which says 75% of celiacs will test positive after only two!  Thank you for your feedback—my main wonder is if this all over disseminated pain and fogginess sounds like celiac.  It only comes when I’ve eaten food containing gluten…                
  10. I have been on the run for a diagnosis for the past three years and have reached nowhere as most doctors I have met so far have either said that I have psychosomatic symptoms arising from a depression I once had or irritable bowel syndrome  ( I'm not depressed anymore, I will be again due to the lack of not knowing what's ruining my life). I have severe migraine headaches which increased progressively over the years and have  chronic rhinitis since a small age ( I am currently 21 yrs old). Over the last three years, my health started deteriorating. In February 2013, I started suffering from depression ( bouts of uncontrollable crying, extremely low and worthless feeling, sensitive to small unreasonable things, lack of focus and generally like i was dropped into a pit and trapped). I have always been a very strong person who is not generally sensitive. But from that particular point things have just changed. Now I believe I'm not depressed anymore, though I have been diagnosed as having an anxiety problem. Since then I have had  other symptoms recurring ( they come and go and there are days I feel slightly better)  including joint pain (everywhere) , dull annoying aching pain on the entire right side of my body that gives me a numb, extremely weak feeling,  muscle spams and tightness (mostly in the thighs), severe brain fog ( I am a very ambitious person and it kills that I cannot concentrate or remember anything that I am studying anymore), migraine headaches ( pain in the right eye during the attack), cycles where I have acid reflux like symptoms, constant vomiting after every meal, alternating constipation and diarrhea. I always have mild stomach ache after eating and then have to use the bathroom. During these cycles, I have gone to doctors who said it was IBS and put me on medication that never worked on me. I have gone up until three weeks where I could not eat anything but drink ORS. I also have cycles of excessive sleeping where I sleep almost 15 hrs a day ( increases or decreases from 15)  and still wake up extremely tired. Throughout the sleep I am constantly dreaming and get very unrefreshed sleep. I also have shortness of breath,nausea,  chronic fatigue and exhaustion and can not do anything mentally or physically stimulating. There have been points where my hands were weak enough that opening bottles became a challenge. Also have a history of incessant hair pulling since I was a child and vitamin D deficiency ( from a blood test done in December 2014). My thyroid tests came back all normal. This summer I started NAET treatment and according to the muscle testing response I have been shown to be "allergic" to almost all food items and also deficient in vitamins and minerals. The treatment so far hasn't helped me and I came across Celiac disease and asked for me to be tested during the period while I was undergoing NAET. I suspected celiac due to the fact that including all these symptoms, I also have tooth discoloration and brown stains on my teeth that I get cleaned every 3-4 months. Dentists do not really know what causes them so far and the last one i spoke to said it may be due to enamel hypoplasia which occurs in gluten intolerant cases. I did a ttg-IgA and total IgA test but came back negative/normal. I have done IgE test in the past and have results that are sky-rocketing high ( as i have chronic rhinitis). But this time my IgE too came back normal as well despite having allergies. Again, this blood was drawn for testing in the middle of my NAET treatment. Should I trust this result? I hope to find some answer or diagnosis to what is going on with me. I cannot function properly and I am extremely exhausted with no energy all day. Life is crumbling at a very important age. If it may be helpful, my family has a history severe joint pain, spondylosis, migraines and couple of symptoms similar to mine. They all just deal with it. My sister who is 14 have been showing weakness on one side, tooth problems and keeps fracturing herself along with very irregular menstrual cycles. I too have noticed that my menstrual period has reduced to less than 3 days from the normal 5 over the past two years, and they are light. Is anyone facing similar health problems or am I a hypochondriac who is not "thinking positively enough" to get better?  Sorry for the extremely long post. 
  11. Hello Celiac friends, I could please use some advice. My father was diagnosed with celiac disease a few years ago and has been getting used to the diet. He just had a knee replacement a week ago in hopes of relieving chronic lower back pain. His knee is heeling well, but laying in bed for a week had wrecked his back. In addition his stomach is really upset. Even though hydrocodone is technically gluten-free, can it still set off celiac disease? Do you have any celiac disease friendly pain relieving remedies? And any suggestions for helping calm his tummy down since he's unable to move around and get the gas out. Can surgery and anesthesia also set off celiac disease? He's pretty miserable folks and is still learning about celiac disease. I really appreciate any advice you can give!
  12. Does anyone else have a problem with stomach cramps just from smelling wheat bread? Since my dx I have really had problems when I go to the grocery. 1st I am seriously paranoid about being glutened. The migraine, hot poker stomach and instant tired are awful. It has gotten tot he point where even walking through the bakery at the store makes my stomach sort of crampy. It goes away once I leave the area or cant smell the baked goods anymore. It has been nice on one hand. I don't crave gluten foods; however, its pretty bad going tot he grocery.   Does anyone else have this issue?
  13. Hi All   Just wondering how many of you suffer joint pain when you breakout? I still haven't had a dx of what is going on with me and if any have read my story - I went gluten-free on my own suspisions and now would have to challange to find out for sure/ I just saw an allergist today and he thinks maybe Lupus bc based on my joint pain and areas he thinks Lupus may be it. I was just wondering how common Joint pain is on the topic/DH? Is pain in the joints/tissues commone when you get outbreaks? When I get itchy bumps I also get joint/tissue pain with them on my elbows knees    I got one on my collar bone a few days ago and then my chest plate area and the area in between my breast (sternum maybe?) was so tender and sore I could barley pick up my children - it was like I pulled a mescle feeling but I didn't. That lasted for 3 days and now its gone.  Now when I breakout they raise itch for seriously one second and then don't bother me again but just hand around for a few days and look like a little this consistent with DH on a gluten-free diet to come up itch and then leave you alone??    Thanks so much   btw - are you these days? Did you ever use Dapsone? I saw your old posts about your rash getting way worse after going gluten-free that is so scary What is your current status? Sending HUGS!!    
  14. This is my story. If anyone could give me ideas, put in input, ANYTHING, it would be greatly appreactiated. I'm running out of hope. Bear with me, I know it's long but I just need to get this out to people who understand.   My symptoms started December 7th 2013. They appeared out of the blue. One day I felt so blissfully healthy and the next day I was in horrible pain. It was like waking up into my new life. I'm only 17. Every day I'm suffering so badly from the constipation, the BLOATING, the gas, the pain. Nothing seems to help. December 27th I was diagnosed with Celiac Disease after bloodwork and a biopsy and was told that because my intestines were in pretty good shape considering, I would start to feel better almost instantly after going gluten free. That was 4 months ago and I don't feel any better in any little way! I'm not only gluten free, but dairy free and even grain free. I'm on an (almost) paleo diet and have been for 2 months with no change. I was told by doctor after doctor to just "give it time, you'll get better soon" until one day I was told "You have ibs and there's no cure." I'm so depressed because of this horrible illness! I was taken out of school to be homeschooled, I rarely go out, I don't go a day without crying. I'm not myself anymore. I used to have so much life... I used to have what I thought a perfect body (Yes, I was cocky.) Yea, that's gone now. I've lost so much weight I look sickly, but my stomach is constantly bloated. I used to have such a flat stomach and now I look 6 months pregnant even when I don't eat a single thing! Summer is coming up but it won't be any summer for me. I'm trying to figure out something else it can be, something else I can do. I refuse to believe this is the start of my new life. It appeared so upbrupty and for a reason! It was the Celiac Disease. So why am I not healing whatsoever? I'm not still eating gluten. I even got a bloodtest to be sure. I've been taking Rifxain for 2 weeks to see if it's SIBO but surprise, surprise there's still NO change. Before I found out I had Celiac Disease and became crazy about health and nutrition, I was the kind of person who ate ice crea every single day. I'd have doritos for breakfast and remained 100 pounds no matter what. I didn't even need to exercize. Now I do everyday but nothing helps. I look and feel like a whale. And not only is it ugly but it's painful. I used to do a lot of recreational drugs and drink a lot. I used to eat and act like someoe who's SO unhealthy but my body seemed perfectly healthy. I now have an extremely healthy diet and haven't even sipped a glass of wine in 4 months. But I feel and look horrible. It was supposed to be over at Gluten free. I feel WORSE than I did before. I'm on so many different supplements. Fish oil, L-Glutamine, Digestive Advantage Constipation Formula, Acidophilus probiotics, and I take digestive enzymes with every meal. What more can I do? What can make this all go away? If this is supposed to be the rest of my life I don't want to live. Is it ibs? Refractory Celiac? It doesn't make any sense!!!
  15. Hi all.   My name is Kasey and my doctor is concerned about Celiac Disease. I've had a colonsocopy done and have some swelling in my small intestine. I have an Endoscopy scheduled in 2 weeks. Tonight and yesterday after eating, I've had severe abdominal cramping and pain. I double in pain. No position is comfortable. I took Zantac last night and was able to sleep, but tonight it's been 2 hours or more since I took Zantac and I'm still hurting. I called my GI doctor's office and got the answering service. I'm still waiting on the on-call doctor to call me back. Is there anything I can do before the diagnosis and in the mean time for the "discomfort" that google calls this abdominal pain? Thanks. I hope I can get support here because I need it.   Kasey 
  16. Hello, I have been recently diagnosed w/celiac (blood tests and endoscopy).   It was a complete surprise, I have no digestive symptoms at all. I have had untreatable anemia for at least 15 years (I'm 43). I have had "bad knees" for as long as I can remember. (I also developed asthma and allergies when I was 31 years old.)   I started gluten-free on March 1st and have been VERY VERY strict. Cleaned out the house, and have made all my food at home.    My question is, is it possible to start treating celiac, and then have your symptoms get WORSE?   My knees have never hurt for no reason, just while exercising and going up and down stairs. I haven't done either of those things for 2 days (did elliptical machine 2 days ago) but my knees hurt way more than usual!   It's not normal for my knees to ache for no reason. Could it be because of some kind of detox or something???    Thank you for your time.  Julie
  17. Hello, everyone!    I've never done anything like this, but it has come to a point that I need some advice. Since early last week I have been having the following symptoms: stabbing (sometimes dull) pain in my upper right abdomen going into my back, nausea, acid reflux, fatigue, diarrhea, and an occasional headache. The pain has not went away and sometimes gets worse. I'm a 23 year old female that hasn't really had anything serious medically.   I have been to the ER twice, a gastroenterologist, a surgeon and a family doctor in the past week and a half. They originally thought it was my gallbladder, but after a HIDA scan and ultrasound, it showed there was nothing wrong with it. When they finally did a CT scan it found inflammation in my large intestine, which made my doctor do a colonoscopy. As you might guess since I'm posting on here, the colonoscopy came back perfectly normal. Parasites and infections have been ruled out... They cannot figure it out and I still have the same pain and cannot eat without either throwing up, having acid reflux or really bad nausea. It's getting so frustrating.   As any other person on the internet, I googled other possible things that could be wrong with me since I cannot get rid of this pain! This made me think of the symptoms I have been having the past few weeks, not thinking they could be related to a pain in my abdomen: tingling in my hands and face, I cannot get enough sleep, having a harder time concentrating than normal.    Does this sound like something any one of you went through? I'm so tired of not having answers and I'm frustrated that they cannot figure it out! I've missed work, had to withdraw from grad school because I've missed too much from being in pain and have to cancel a vacation to Denver for Wednesday... Please let me know if you've had the same symptoms.   Thanks in advance!  
  18. Hey all, I've been diagnosed celiac for about a year, and until recently, was living fine with the gluten-free diet. About a month ago, I started noticing stomach aches after drinking breakfast shakes, and eating cheese. I found out that dairy intolerance often comes with celiac, which would have been fine as well, except around the same time I started having stomach/abdominal pain after eating almost anything. It started with gluten-free/DF homemade chili, then gluten-free chicken fried rice, and before I knew it I had to cut almost everything out of my diet. For the last 3-4 weeks I have been eating exclusively raw fruits/vegetables and poached chicken/turkey breast. Literally everything else that I've tried to reintroduce has given me abdominal pain. This includes all types of nuts, white rice, eggs, cod, salmon, peanut butter, even oven-roasted vegetables. I usually start feeling discomfort/tightness in my stomach around 30 seconds to a minute after eating any of these things. Despite eating 2 avocados and 1-2 chicken breasts a day, I'm not getting enough fat in my diet, and have lost about 15 pounds (down to around 120 lbs. as a 6', 21 year-old male). I recently spoke with my dietician who recommended that I start trying a low FODMAP elimination diet. Thankfully, most of the things I had to eliminate were things I already couldn't eat anyways. However, this limits my diet even further, and I can't even tolerate most of the things that are supposed to be okay to eat on this diet. I have noticed no improvement since starting this diet, which leads me to believe that there is something else going on. I have been taking multi-vitamins and probiotics daily for about three weeks but am currently losing hope, as none of my doctors/specialists have been able to give me a solid answer. The doctors that I have seen don't accept leaky guy as a legitimate medical condition and have sent me to a few different specialists instead, seeming generally clueless themselves. I am having a consultation for a colonoscopy soon, as well as for a cystoscopy (I apparently also have some sort of kidney/bladder blockage, maybe a stone. We're not sure if it's related to any of this yet). I have seen a naturopath and a dietician, but neither of what they've told me seem to be doing anything to solve the problem. I feel worse every day, low energy, irritability and a general feeling of tiredness are pretty much constant and it's becoming difficult to deal with school as well as other commitments. Does anyone have any insight as to what could be going on with my body, or at least some general advice on what to do in my situation? Let me know if you'd like any more information. Thanks for reading, and for any input you may have. Matt  
  19. So my son, who is nearly 4, has been having migratory joint pains for about a year and half.  He also gets headaches and aches in his chest area, and of all places, his boy parts.  He has unexplained rashes that look sort of like very small hives to me (not itchy).  He is very irritable, has disturbed sleep when his symptoms are "flaring", and from time to time runs very high fevers with no explanation (like 105+F).  Our doctor thought maybe it was Juvenile Arthritis, and we have had him checked by a pediatric rheumatologist, but there is no sign of arthritis whatsoever.  We were back to the drawing board this week with our doctor, who is very supportive, and our next step is to run a Celiac and food allergy panel because I have had joint pains with my own gluten/ other sensitivities (unknown if iI have celiac or NCGS b/c I was originally advised to go on a GFD after positive Anti gliadin antibodies test w/o biopsy.  I'm too chicken to do a gluten challenge to find out as my health had become so poor before the GFD.).  Our son has never had any GI issues other than lactose intolerance and lots of gas all the time.  He does go through periods of being very, very thirsty if that is related, but really, my oldest child has way more GI issues than our little guy.  It was the rheumatologist who suggested we test for Celiac.  It's all very peculiar to us.  I am wondering if anyone else's children have presented with joint pains like this?
  20. Hey guys,   I checked to see if this had been discusssed, but did not see any previous topics. Please forgive me if it has. I normally take the brand name Ultram for my small fiber neuropathy since I have had so much trouble in the past finding out which generics were gluten free. My pharmacy has just informed me they will no longer be carrying the brand name Ultram and have the generic tramadol by Amneal. I called Amneal today and was told there is no wheat, barley, rye, or oats in the tramadol and it is in the clear for celiacs. The lady said the only item that may cause some an issue was the corn starch, which comes from corn gluten, so they do not say it is "gluten free", but they will say it is ok for celiac patients.   My question is, has anyone had any experience with this manufacturer of tramadol and how did it go? Any information is helpful. I can start searching for other pharmacies that carry the brand name Ultram in my area if necessary, but if the Amneal generic works just as well, then I see no need to do so.   Thanks in advance for y'all help!   Jamie
  21. Hi everyone! I was wondering if maybe you beautiful people can help me? But first let me tell you my story. My problems began at the very young age of 3 months. I would hold my breath and only let go after awhile. My mom doesn't know the precise amount of time because to her it felt forever. I continued to do this for the next few months. Only be diagnosed with "She's a stubborn child, that's all. She'll be fine." Keep in mind this was 1991 and in South Texas. I went through the next few years okay, with the exception of fluctuating weight. At the age of 12 during an all star softball game I began to feel as if I would faint. Cold sweats drenched my body and I tried to wipe the dizziness away. After my at bat (which I struck out) I told my coach I could not go back in, I wasn't feeling good. My mom came over to take a look at me and saw that I was pale with color also leaving my lips. People began giving me candy and Gatorade, thinking I had low blood sugar. I began to feel somewhat better just now with a stomach ache. By the next day I was good as new. Then at 13, I began to feel a slight burning in my chest. My mom took me to the doctor and I was diagnosed with heartburn. With that appointment I also was told to see in a cup. It came back that I had a bladder infection and I needed to lay off the soda. After two weeks with minimal soda I came back for another and was given the same results. I decided I would give it up completely. I was proud of myself, I went one month without soda! I had only consumed water. I went back and same results again! I was tired, I didn't want to go back. That was that. During high school I would complain to my mom that I sometimes felt like I was in a dream.Like in a fog or a daze. Other than that I was fine. I approached college, and I began to get stomach pains. I went to the doctor and had many scans done and the next thing I knew I woke up with no gallbladder. Till this day the doctor has never explained why he took it out. The pain continued on and gradually got worse. My sophomore year of college I found another doctor who wanted to check out my blood level, see how I was doing. She called me the day after with a worried tone telling me my atlases and liaise enzymes were through the roof. Along with low b12 and D. She asked me how I was feeling and I told her besides some stomach pain,I was alright. She began to check me every 3 months getting the same results. Only a few times were the pains in my stomach so unbearable I cried, almost calling the ambulance. I decided to stretch out on my floor and focus on breathing. I fell asleep. My senior year of college my left eye began to hurt. Next thing I knew my vision began to blur, this was my first migraine. Went back to the doctor, where she told me I was under a lot of stress with graduation coming up and all. I was like, "Yeah she's right, she's the doctor." I left it at that. Meanwhile I had another check up for blood work. Again the next morning a nurse called me with the results worried cause my levels were high. By this time this call was normal for me. They would be high but no doctor could explain it. They would also tell me while my pancreatic enzymes were high, my b12 and D were getting lower, upping my dosages. Though I would stop taking them because I would get sick. This leads me up to now, same blood results high atlases and liaise and low b12 and D. But this last visit a new one occurred, low iron. I have always had cold hands and feet, yet now I feel cold all the time even when outside sometimes (and I live in TX). I hope you all can help me, please? Thank you!
  22. I'm not sure that this is a related disorder so I may be posting in the wrong place. I'm hoping someone can help with this. A week ago I was sure I was getting a uti. Pelvic pain and pressure...having to pee constantly. On Thursday I went to see the doctor who did a culture and started me on antibiotics. On Monday she called to say that there was no infection. ..which didn't surprise me because I wasn't getting better. I'm going in for an exam and ultrasound tomorrow. I'm still experiencing this. I'm waking at least twice a night to pee. Yesterday I was able to go 2 hours without having to go during the day and I was so excited...thought maybe it was getting better. But no. Anyone else have this? Anyone know what it is? What should I ask the doctor tomorrow? I'm planning on taking my kids to the aquarium on Friday and it will not be enjoyable if I have to run to the bathroom all the time. I would love some input on this.
  23. Hi everyone. I'll try to be quick with the background because seemingly its the same for most people. But here goes. 2 months ago i had a stitch like pain in my left abdomen under left ribs, sort of spleen area, like a balloon was under there. and i was bloated. I had mild constipation (this day i had eaten a pizza, toast and a cake) it persisted, i went to doctor. had an array of blood tests all negative, including celiacs, doctor said mabe ibs, i then saw another doctor after a month of similar discomfort, she said seemed like gluten is a problem for me after analysing my food diary. I went gluten free for 2 weeks and felt better, however after every meal i could still physically feel something under my ribs, top of my colon, spleen stomach, muscle (no idea) but it is there. however no cramps, stitchs and bloating less. I then one week ago had a sandwich as i was in a rush and i felt terrible all day, huge bloating constipation for the first time in months, cramps. So it seems gluten is a problem for me. BUT... does anyone have the same symptoms as me? are they consistant in Gluten senstivity? what is it i can feel when im bloated? it isnt pain its just there.if you stand up and breathe in filling your abdomen on there is something tangible that follows the angle of the rib cage down,protruding a little out further than them and when i eat i feel this even when im not breathing in. is it my spleen? my transverse colon? muscles that are normal but when im bloated they are pressed against like when i breathe in? i would really appreciate any advice, i feel a little alone, the doctors don't seem very knowledgeable on this subject. btw I am fit and healthy, 29 years old from UK, im  5ft 10inches tall and 70kg , i eat healthily also. Thank you so much everyone look forward to your opinions. Thanks Matt
  24. Hello everyone!  I was recently diagnosed with Celiac's about 2 weeks ago after FINALLY finding a doctor who's more into treating causes and healing my body instead of just stopping into the room for 5 minutes and giving me some random medication. I was diagnosed with Crohn's Disease at age 15 (am now 24) and my new doctor thinks it may even have been the wrong diagnosis and that this whole time, it could have been a severe gluten allergy causing all my issues.    I just had a couple of questions, and I would love any help/encouragement/answers because it's been a very stressful and hard time and I'm at the end of my rope.    1) I've been eating gluten free for about 3 weeks now and I'm noticing that my stomach is "harder" somehow. I guess you could call it bloating, but my stomach doesn't seem "puffier" per se - it just feels tougher and sticks out more (and it's noticeable because I'm pretty thin). I would have thought that my stomach would ben flattening since going gluten free. Does it just take a long time?   2) I've had a lot of shortness of breath and a hard time breathing. It feels like I can never get enough air and I'm always trying to purposefully yawn to get more air in my systems. I've also had a little pain in my upper right side, around my ribs, when I try to breathe in deeply. Has anyone experienced anything like that?   3) Anxiety: I started getting HORRIBLE anxiety attacks about 4 months ago. It's pretty much developed into constant panic and anxiety attacks and. Always feeling depressed, anxiety, moody, worried, and scared for no reason at all. I've always been an extremely happy, optimistic, outgoing person, so it's been really hard for me. I thought that going gluten free would help me immediately, but it's been an extremely slow process and the anxiety and fear is still pretty consistent. Is it normal that it could take me a longer time to start feeling less anxious? I don't want to take any medications for it and am trying to fix my gut instead - but I need to know that it's going to work eventually and be worth it, because I feel like I'm drowning in my own head sometimes.    So, lots of questions, but everyone on these forums seems very helpful and encouraging, and I really just need some reassurance! Thank you!!!
  25. Hi everyone. I'm a nineteen year old female. A year ago I began to get lots of stomach pain, constipation, and diarrhea. I also experienced an increase in fatigue, anxiety, and depression. I also have autism, diagnosed at age thirteen. A few weeks ago I got blood test results that strongly suggested the possibility of having Celiac disease. My endoscopy and colonoscopy are scheduled for July 11. I'm so nervous. Hoping the doctor will be able to tell me that they know what's wrong. Looking for support, but if anyone else is going through similar stuff, feel free to message me or post on this thread- either way.