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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 cupp125

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    Writing (Literary Fiction, short stories), Reading (Literary Fiction: William Trevor, Cormac McCarthy, Ernest Hemingway, William Faulkner, J.D. Salinger, Louise Erdrich, Alice Munro, James Joyce, Chekhov, etc.), Good Films, Music, Teaching (Ethics, Composition, Creative Writing, Literature)
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  1. Happy birthday and may God bless you today!

  2. Thanks so much! I've had a ton of blood work done and the only deficiencies noted were B12 and A (about a month ago). I took supplements for the A and shots for the B12 and both are now back to normal. I'm trying to start an elimination diet, but it's been hard to figure out what exactly I can eat. Everything seems to cause some sort of reaction, be it severe itching or weird brain fog/dizziness. Right now corn, rice, potato, and tomatoes are out. Fortunately I have an appt. with another allergist on Tuesday, and I'm hoping that she can help me definitively pin some of these things down so that I can try to get back to a normal life. I'd much, much rather have food allergies than this P.O.T.S. thing my cardiologist seems to suspect. Avoiding foods is a lot easier than trying dozens of meds to get minor relief. I'm a little concerned that on top of celiac disease a ton of food allergies will really make life tough, but I really just want to feel better. I'll do anything.
  3. Hi Everyone, I was diagnosed with celiac disease about three years ago and for the last two years (and most notably for the last six weeks), I have been having some pretty severe health problems. Horrible itching (2 years--finally convinced Derms to test for DH, but waiting on results) Fatigue Dry mouth Rapid, rapid heart rate, especially when standing Drops in blood pressure Dizziness and lightheadedness so bad that I can't leave the house and lost my job My heart skips beats. Those are the major things. I've seen twenty some doctors and recently saw an allergist who told me I was allergic to carrots, lettuce, basil, oregano, soy. I've seen cardiologists, neurologists, dermatologists, celiac disease specialists, and nobody, NOBODY can figure out what's wrong. The nearest I got was the Card'gst suggesting P.O.T.S. (but the neuro didn't seem to agree). My question is, is it possible that these symptoms are coming from food allergies? Most notably rice and corn. On two occasions eating rice put me in the ER with dizziness and palpitations. Today, I ate corn for the first time in two days and instantly felt dizzy and my heart started beating crazily. Potatoes seem to make me itch much, much worse. In other words...I'm losing my mind, doctors can't seem to help me, and I'm wondering if anyone else has experience with this. I desperately need help! I'm getting married in five months and I'm terrified that I won't be able to . Thanks! - Colby
  4. How Do We Make This Better?

    I actually have been to the University of Chicago's Celiac Disease Center; however, my experience with it has basically been seeing a GI doctor who is part of their staff. It was very nice to not have to explain what celiac disease is to her, and she knew to check for other Autoimmune things right off of the bat; but beyond that it wasn't really a tremendous help. I think this is less a fault of theirs and more a result of the fact that my current health problems, though they may stem from years of undiagnosed celiac disease, are not directly related to my intestines. I've been travelling to their facility (which is in an...unpleasant part of town) a few times a week (two trains and a bus---about an hour and forty five minutes via Chicago's a-w-f-u-l public transportation) to see my doctor their and some dermatologists who finally, finally agreed to test me for DH after I basically had to demand it. It's funny you bring up Oprah, which by the way is a great idea, and I think I will try to submit something to her. Honestly, I think that more needs to be done to get awareness out there. That is to say beyond a thirty second spot on the View. Nobody cares about us, and we have to start demanding better care. Anyhow, the reason I say it's funny you bring it up, is that my father and stepmother keep urging me to send my case to the writers of "House" or "ER." I think trying to get Oprah to care about this is a great idea, and I'll do my best and get to work on that ASAP. Also, I'm a writer (and a professor currently unable to work because of my health problems), and I'm thinking of writing a memoir/collection of essays about celiac disease, living with it, and my struggles with the medical community. I know the world needs another celiac disease book like it needs a hole in the head, but my feeling is that, having read most of them, the focus in all celiac disease sites, books, etc. is on recipes, how to eat, where to eat, what to cook, how to not be sad about not having bread....nobody seems to be taking on the other side of the disease, which is the frustration of doctors looking at you like you're crazy, being reduced in conversations with most new people to the guy/gal with the weird food thing (it's ALL people want to talk about when they meet me, which is great, but my goodness, I'm a human being with many other very interesting things about me), the way it affects family life, dating, working...all of this combined with my experiences of getting very, very sick and the torture of navigating doctors who don't know how to treat me because the drug companies aren't invested. I want to write this, but my concern is, if I do (take time away from my fiction, which is very important to me), will it be something that people would find helpful? I guess what I'm saying is, it would have helped me to read something like I'm planning, but would it help others? Writing a book takes a long time and a lot of work, and if I'm going to attempt this, I want to do it full steam. That's way, way off topic though, but your response started to reenforce the little spark that was forming already from all these months of frustration--I'm just not the type of person who can see a problem and say, "that sucks, but it'll get fixed." I always teach my Philosophy students that if something bugs them, DO SOMETHING ABOUT IT. Yep, the drug co.s have all the money and the influence, even the wheat lobbyists, all of these people have more to work with, but is that not true of any other situation in history that eventually got fixed? I'm cooking up some ideas to get this turned around. This forum is a great place to talk to others and really bounce ideas around. I'm tired of nobody knowing what's wrong with me. I can't deal with that any more.
  5. How Do We Make This Better?

    My apologies for not responding to all of your great replies sooner--unfortunately, I'm still dealing with some very, very frustrating health problems (ironic, no?). I think that everyone raises great points. Doctors probably won't have (or take) the time to read literature provided to them (which just gave me a good idea--I'll type it up in a second), and yes, unfortunately right now money and drug companies control the medical community. I won't get into a rant on that and how horrible it is, but I really, really feel that patients with rare or tough to diagnose diseases are being given less than acceptable medical treatment. I can't shake the burning urge to do something about it and fight this, but when you take on something like this you are taking on a lot of money and a lot of people who don't want things to change. One of my biggest disappointments since finding out I had celiac disease is the oversaturation of (very helpful and wonderful) information on recipes, food brands, etc. and the lack of information on the other things, the problems with doctors who don't know anything about it, the severe emotional distress of not being able to get help when you really need it, etc. Anyway...to my idea: We know that we probably can't change the way most doctors think about celiac disease because they just weren't trained to look for it. What if we went after the medical schools? What if we sent literature and letters...or petitions, to medical programs across the country, asking, pleading with them to educate future doctors on celiac disease and associated conditions and complications. I don't know how much influence the drug companies have over these programs, but I would think that this would be the place to go. Maybe we can't get great help from the current generation of docs, but what if we could help usher in a new generation of very well educated doctors fresh out of med schools that spend more than a half an hour on celiac disease? Thoughts? - Colby PS - I hope you'll forgive me if my tone is a bit...bitter. Part of it I'm sure is the difficulty in conveying tone through typed, online things, but the larger part is my frustration with being sicker than I have ever been and not being able to get even a glimmer of an answer. I lost my job this week because of it, and I'm concerned that I won't be able to get back to work soon. More than anything, I'm worried because I'm getting married in six months and I can't believe with any confidence right now that I'm going to be healthy. I'm a little upset with the twenty-some odd doctors I've seen in the last few months.
  6. Hi Everyone, I have been thinking about something for a long time, having reached levels of health-related desperation that I never thought I could reach. It took doctors twenty-two years to diagnose me with Celiac Disease. They spent the entire time telling me that I had a "nervous stomach" or that I was just anxious. I kept telling them that I never felt anxious and that my body was telling me that something was wrong. Fast forward to today. In the last two years, I have seen over twenty doctors, trying desperately to find out why I am constantly dizzy, why my heartbeat is so screwed up, and why I can't breathe. I tell them that I have Celiac Disease and that there are many associated issues that I am concerned about. None of them seem to care. Their knowledge of C.D. is limited at best, and what do they tell me....you have high anxiety. My question is how do we raise awareness? My father attends support groups and recently met a doctor with C.D. who apologized to everyone for the lack of knowledge in the medical community. He said that most doctors are taught that they will probably never see a case of celiac disease and that it is pretty much dismissed in med schools. Now, I don't want to impugn the whole community. I know that there are great doctors out there. I don't want to insult anyone. All I know is that I live in the third largest city in the country and can't get help. My fiancee keeps telling me to keep my chin up and fight it, and I want to. I want to do something to help this situation. But what can we do? How do we advocate for a disease with no cure (and thus no medicine and thus no support from the drug companies)? I feel very hopeless about my celiac disease nowadays, and that worries me. I was thinking of writing an open letter to send to doctors, pleading for awareness of celiac disease and associated issues. Does anyone think this is a good idea? Any other ideas?
  7. OK....finally a bit more to update you on...nothing complete, but something. I got a call from the nurse at the center this morning and she told me that my blood tests had come back. Drumroll....high bilirubin (typical, Gilbert's), other liver stuff was fine, anti-nucleii (other auto-immune stuff tests??) were fine, but my B12 and Vitamin A were very low. They called in a prescrip. for Vitamin A, and I have to go in tomorrow for a B12 shot. They want me to come in five days in a row for the shot, then once a week for four weeks, then once a month indefinitely. Could all of this be deficiencies? I know a lot of you mentioned that, and I've got my fingers crossed that that's what it is. I've been taking sublingual B12 for three days with moderate-at-best results. The nurse said that these deficiencies could be causing my itching, severe dry mouth, and dizziness, among other things. I did a lot of looking around online and couldn't turn up any associations between B12 and A and itching or dry mouth...but if they think it'll work, I'm all for it. I will do/try anything! I missed work again today, and I think my boss has had just about enough of it. I'm having a hard time believing that in two years of seeing doctors, nobody ever thought to test a celiac for vitamin issues. Is that common? If so, we have got to do something about informing the medical profession. This is unreal. Anyway, I'll keep you posted with how the shots make me feel. Keep your fingers crossed! Also, I've been doing exactly what many of you said and stripping my diet down to next to nothing to slowly test foods. Right now I'm just eating fruit and some meat and vegetables. I'm going to try to get in to see an allergist ASAP. Has that been helpful to anyone else? Again, thank you. Honestly. Thank you.
  8. Finally an update....though not the one I was hoping to offer. I had the appointment(s) today, and I went in feeling very optimistic, but I can't say I'm one hundred percent relieved. Basically I got the same thing I've been getting for two years...."hmmm....odd, we'll run some tests." The good news is that I didn't have to explain what Celiac Disease was, they knew it well. Basically, they told me that my high bilirubin count was coupled with another high liver count that my other doctor had failed to mention to me. I've got some jaundice in the corners of my eyes, and they want to run a whole gamut of tests on my liver. The doctor also gave me Rx for Valium to help control the anxiety all of these health issues are causing. I'm skeptical about it, and nerbvous about taking meds with a potential liver issue. She's also testing my blood for nutritional deficiencies and some other auto-immune things, particularly Sjorgen's Syndrome because lately I have NO saliva in my mouth whatsoever, no appetite, fatigue, and I'm waking up with dry eyes. Then they sent me over to the Dermatologist who I struggled with. They don't seem to think it's DH due to the fact that my skin isn't showing much blistering. They said that they could run the test for it but the results would be questionable because they couldn't get a good sample without significant blistering, postules, etc. I got a little flustered and told them, "listen, I haven't slept for more than two hours in a night in months, I can't work, I can't go for a walk with my fiancee, I can't even read a book. I'm up all night, every night, in complete agony with this." Long story short, they want to wait for the blood results to see if the liver stuff could be causing the itching as well. Also, they're doing a test for some other skin thing...folliculitis I think it was. They gave me an Rx for some shampoo, some soap, and some lotion. As far as this portion of my visit goes, I'm pretty unhappy. I understand they're working hard to help me, but I was really, really hoping for some sort of relief to this itching. I'll try the Rx but I'm not feeling too confident. A derm. in the past told me it was folliculitis and I tried his remedy to absolutely no avail. To sum it up...now I just wait and see. I'm waiting for the blood work to come back, and feeling pretty nervous about it. Mostly I just feel really down because there doesn't seem to be any end in near sight. I don't know how I'm going to go to work this week, how I'm going to handle another week of not sleeping....I'm feeling pretty sorry for myself, and I apologize. The comment about the anti-anxiety med and how much that helped was very, very interesting. I'm going to try the Valium and hope it gives me some results. I can't tell you all how much I appreciate all of your input and advice. It's comforting to know it could be some vitamin deficiencies and that many of you have gone through similar stuff. I read all of your postings and have such mixed emotions. On the one hand, I feel great relief that so many people out there have shared my feelings and are willing to talk to me about it, and on the other hand, I feel so sad that so many of us have to go through this and keep turning up dead ends. I feel so horrible for my fiancee. I'm not the man she got involved with right now....I'm limited mostly to bed, can't eat, can't sleep, can barely hug her for more than ten seconds before the itching comes on. She's so patient, but it's hurting her. I just really, really hope that A) they can help me, and this week. and That at some point in the very near future, all Celiacs will get better, more thorough, and more timely care. Thank you all, and I'll be sure to update as frequently as I get new info. Fingers crossed, Colby
  9. Can't Sleep And Itching....

    I've had the same exact problem and strongly suspect it to be DH. I cannot, for the life of me, stop itching. I feel like I'm being tortured. I'm lucky to get an hour of sleep. I'm completely gluten-free though, so I have no idea where the G that would be causing it could come from. I'm losing my mind. I would suggest being very careful with benadryl and other antihistamines. They work very well...always knocked my itching right out, but my body built them up and I had to go to the ER with severe lightheadedness, a very fast heart rate, and some other issues. Maybe I just can't handle that kind of medication, but it got me good--figured I'd pass it on. This itching is far, far, far worse than the stomach issues associated with Celiac. I'd take them back to get rid of this!
  10. Thanks so much for all of the support everyone. Brief update: I basically just took myself off of the antihistamines altogether and my heart rate went back to normal. The fluttering and pains are still there, but I'm trying my best to eat as carefully as possible. The lightheadedness and rapid heart rate problems got better each day the meds were out of my system; unfortunately, the itching came back something fierce. I've been slathering myself in Dove lotion (I read it was gluten-free), and it does help some, but I woke up about twenty five times last night because of itching. I'm starting to think more and more that it's gluten related because my stomach was hurting as well...something is sneaking in somewhere, so my plan is to eat as close to raw foods as possible to really clear my system. Less than a week until I see the Celiac specialist....really hoping they'll have some help! I'm glad to hear so many of you say that you had similar issues and it was gluten-related. These problems are terrifying, and having some others share their experiences helps to calm me. So thank you! - Colby
  11. I can't believe I waited so long to join this messageboard. Honestly, it feels so good to just have people who know what Celiac Disease is! Thank you so much for taking the time to offer feedback. As you can imagine, I'm so frustrated with these issues. My doctors have run a ton of blood tests, but I'm not sure if the vitamin deficiencies would have been in those workups. If they were, then they were fine; but if not, my doctor really needs to get it together. The only thing they've ever found is a high billirubin count (my Dad and brother have Gilbert's so they assume I do too), and one time a anti-nucleii body (sp?) came back high, but it went right back down. It's a mystery to me, but a terrifying one. I'm glad that I'm not alone, and I'll definitely keep you posted when I get back from the Celiac Center here in Chicago. Man oh man, do I hope they can help me. - Colby
  12. Hi, I'm new to the board, and going through some frustrating health things that I really think are a result of my Celiac Disease. I was diagnosed with celiac disease about 2 and a half years ago, and ever since, I've been having some pretty strange and to be quite honest scary symptoms. I've been to ten doctors in the last two years and none of them have helped me even a little bit. They don't seem to know much about Celiac other than the name, and they refuse to listen to me. I went 22 years wtih Doctors telling me I was crazy before they figured out I was a Celiac. I feel like the same thing's happening now! I've had chest pains, mostly on the left side of my chest, sharp and stabbing for a few seconds at a time, multiple times throughout the day. I get them sometimes on my right side, but nowhere near as frequently. I also have very sharp pains in my left arm, the fingers of my left hand, my left leg (especially the calf), left ankle, and left foot. The pains happen on the right side too, but again, not nearly as frequently. I've also had an elevated heart rate (90-107 resting!), and palpitations. My heart, every once in awhile, skips a beat....just this long, scary pause before it kicks up again. Also, for two years now, I've been itching like crazy! There's no rash or marks though. Every inch of my skin just explodes in itching and I can't sleep for even a second. Lotions, etc. only make it worse. So I started taking Benadryl for the itching and it worked, but after two years on it, my body had a very, very bad reaction to it. I was sitting in bed, watching a movie, got very dizzy, couldn't breathe, and my heart was pounding. I went to the ER and they hooked me up to an IV. The doctor told me to take Zyrtec instead, but it did the same exact thing. Now, I can't take any antihistamines because they make me feel so bad, but the itching is insane. It's driving me nuts. I've seen two different dermatologists who were NO help. My heart has been checked so many times with no results. EKGs have all come back fine. I had a sonar cardiogram that showed nothing, a stress test was fine, multiple chest x-rays, all fine. But the pain continues, and the palpitations continue, and they're only getting worse. I hate to admit this, but I actually wept in the doctor's office yesterday, begging him to help me, and he just prescribed another antihistamine. I threw the prescription away. He had no idea what Celiac was. I stick to the diet pretty well. My stomach really, really bothers me when I don't, so I have to. Also, the itching doesn't seem to happen with gluten, because my stomach really lets me know when I get some of the bad stuff. The itching is just all the time, regardless. I'm really, honestly at my wits' end. I just don't know what to do. All of my symptoms are getting worse, and nobody will listen to me. No doctor will help. I have an appt. in ten days at the U. of Chicago Celiac Center, and they're really my last hope. I just don't know what to do and I thought I'd post and see if anyone else had symptoms like this. Thanks in advance.