• Announcements

    • admin

      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

vegan lisa

Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About vegan lisa

  • Rank
    New Community Member

Profile Information

  • Gender
  1. We don't avoid iodine or soy so please double check for those ingredients. My daughter avoids dairy, egg, and many other ingredients. She has these: http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Nutrition-Now-Vegetarian-Gummy-Multivitamin-Strawberry/dp/B0012AR6A4. Here is the ingredient list. Ingredients Sucrose (Sugar), Glucose Syrup, Pectin, Natural Flavors, Lactic Acid, Citric Acid, Colors, Black Carrot Juice Extract, Turmeric (Cucuma Longa), Annatto Extract, Sodium Citrate, Fumaric Acid The lactic acid is from a vegetable source, not dairy. -Lisa
  2. Hi! I've been struggling for a few years now with stomach pain and other celiac-like symptoms (joint pain, early menopause, brain fog). I've had negative blood work and a negative biopsy (May - June 2010). I went gluten free, just to try it, and it really helped. I'd say I'm 90% better, but not 100%. I also can't eat apples and a few other foods. I have a "fancy" new GI doc who seems committed to finding a cause for my symptoms. The first few things he suggested all made me worse, including a food challenge for apples and wheat. I was so sick from the wheat challenge that I didn't try any other foods and just gave up and went back to my very restricted diet (in my opinion it's restricted... I still eat soy, though). It took me 2 weeks to get back to "ok" after 4 day challenge that worked up to 1 full serving on day 4. Now fancy new GI doc wants me to keep a food diary for 6 weeks, documenting all my food and symptoms, and then to go back and see him. I asked the nurse who called with these instructions if I was supposed eat the food that make me sick and document that, or eat the foods that keep me well and document that. The nurse didn't know and said that it was up to me. So here is my plan: eat foods that make me well, and then do a short (maybe 1 meal) challenge and document the results. I have some time off work in May, and the work I have to do when I'm at work is really minimal during that time, so this is manageable. Does this sound like it would be helpful to the doc? For what it's worth, he does believe me that these foods make me sick, and it's possible he wants to document something before diagnosing "non-celiac gluten intollerance", which seems to be his plan. On the other hand, could it be something else I don't see? Soy, corn, chocolate? Is there any chance doctor going to be able to help? I guess I'll give it this one last try... Any advice is really welcome. I don't really know how to go about the food diary. I have each page split so one column is everything I eat and the other is a list of symptoms. Any other tips? Suggestions? BTDT stories? Thanks for the reassurance and support!! Lisa
  3. I also have this pain as my primary symptom. I keep telling my family it's like I've swallowed a porcupine. I was misdiagnosed with gastritis, but the upper endoscopy didn't show any gastritis. I have terrible reactions to the PPI's and Zantac-like medications. They actually GIVE me heartburn and reflux, in addition to horrible digestive side effects. Could those medications be aggravating your symptoms? I begged my doctor to take me off Nexium, and when she agreed I should give it a try, she was amazed that so many of my symptoms improved (except the porcupine pain...). Going gluten free has cured the pain for me, despite my negative blood tests and negative biopsy for celiac. I still don't know what illness I have. Good luck feeling well again! Lisa
  4. I had the exact same experience! It was horrible, but let me add that this experience is also very, VERY rare. Most patients remember nothing, as though they were asleep. I've been told many patients hardly remember going to the hospital at all for the procedure. Very pleasant for most! I believe the procedure requires the patient to be able to swallow on command, and so the conscious sedation is needed. I knew going in that my lack of response to the medication was likely (I've had trouble before with other medications) and had the anesthesiologist in the room putting meds in my IV during the procedure so I could be more "out" for parts, but "up" for the parts where I needed to obey commands like "swallow". My new GI is considering a gluten challenge followed by a repeat EGD, and I am NOT happy about either going back on gluten or the EGD. Sorry to hijack the thread, but I've never "met" anyone else who had this lack of proper response to those meds and I couldn't help but reply! Lisa
  5. Very interesting. Thanks everyone. I think I will take pictures next time I have some. I've been relatively clear for a few days now (also gluten and possibly iodine free). I also think I could easily get my fancy researcher-GI doc to refer me to a dermatologist for DH testing. He thinks I likely have "non-celiac gluten intolerance" and is eager to rule out celiac. Also, then I wouldn't have the burden of convincing the doc to do the biopsy. BUT, I bet pictures would help me both with the GI doc and the derm. No rush, I guess. I'll start taking photos and talk with my GI doc. By the way, I had looked at those DH photos before, and they are definitely not for viewing with children (or anyone!) in the room. Beware before you click! Lisa
  6. Hi, I have a skin "rash" on my stomach. (It isn't a rash, more like a handful of super itchy/stinging spots that look like chicken pox or small cold sores on my stomach that burst quickly and scab over.) It's been coming and going for at least 10 years, and for about the same amount of time that I had joint pain. The joint pain went away when I gave up gluten, and came back with a vengeance when I challenged gluten. The rash improved off gluten, but wasn't cured. It worsened somewhat when I challenged gluten, but it wasn't as obvious as the joint pain since the rash comes and goes anyway. I've thought about being tested for DH, but I just don't know how to go about it. The dermatologists in the area are well known for their incompetence and poor ethical behavior, so I'd have to find a derm one to two hours away to find a competent one. Is competent good enough, or do I need a really fabulous dermatologist for this? Plus, the rash does come and go. Sometimes the sores stick around for 2 or 3 weeks, but often they heal quickly and suddenly. So if I go to a fancy dermatologist at a University hospital, it's a 2 hour drive, probably a 2 month wait for an appointment, and then I may or may not have symptoms? It's a bit overwhelming, and I'd like some more information before I give up on it! Thanks! Lisa Also, do I need to be eating gluten for DH to be diagnosed? If I'm off gluten, the antibodies won't be present, right?
  7. Quick History: I have had over a year of stomach pain. The GI issues (except for stomach pain) have mostly healed and they turned out to be a reaction to a medication, and were NOT food related. I've had a celiac blood panel done, which was negative (actually 0, not just below threshold of a positive test). My total IgA was normal. I had an EGD and the three biopsies that were taken have been reviewed by two doctors and show no signs of celiac. I have mild reflux, which I am confident was caused by the medication I took for 7 months last year. Both my regular doctor and the GI were sure I had celiac. I was sure too, as I have/had many of those vague secondary symptoms (early menopause, joint pain, brain fog) in addition to this sharp stomach pain. Last fall, after all of the negative tests and after being "dismissed" by my first GI doctor, I tried going gluten free. I had been gluten free since late August or so, and many symptoms improved, notably the stomach pain and joint pain. I decided that the life-long gluten free decision was a big one. Also, while I felt mostly better, I did not feel all better (maybe reflux causing problems still?) and at my primary doctors advice I went to see a fancy GI specialist at a University hospital in my state. Among other things, he suggested a gluten challenge. I started slowly reintroducing gluten last week and nothing dramatic happened at first, but slowly I'm noticing things: *stomach pain is back, but is very mild. I would never seek a doctor for this pain that I can totally ignore. *joint pain is back. Total bummer, as I hadn't really noticed it was gone until last night when it really hit. It always bothered me in the evening and I used to blame it on cheap shoes without enough cushioning. *I've had a headache for 3 days. *Brain fog is back. I can't think things through clearly. But then, maybe I'm distracted and overwhelmed by the idea of the gluten challenge and THAT's why I'm unfocused? *I'm exhausted... my skin feels heavy, and it feels like it takes extra muscles to breath. BUT, I'm still making it to exercise, making it to work, so it's not like it's real muscle weakness or actual breathing issues. I'm also sleeping fairly normally. I can explain away a lot of these symptoms individually, but taken altogether I am feeling pretty crabby. I don't know when to call the doctor to discuss it, or if the doctor even would have anything to say at this point. Do these sound like symptoms that would be enough for you to call off a challenge? Especially in light of my thoroughly negative tests? Is it worth giving it another week or two? In addition, I've failed my apple challenge. Not only did it make my reflux worse, but I was a wreck -- I made about 4 huge mistakes at work in the 24 hours after. It's hard to imagine an apple could do that to a person, but it was my 3rd apple challenge with the same result. Go figure. Thanks for your thoughts. Mine are clouded at the moment!! I really wish I just had a ticker tape receipt system that would give me print out what (if anything) is wrong with me! Lisa
  8. Thanks for your thoughts. I quit taking the Zantac, which as you all pointed out, makes perfect common sense! It took about 2 weeks to recover from the rebound reflux when I quit taking Nexium, but I'd been on that for 7 months. I've only been on Zantac for 3 days, so I hope to recover more quickly. I put a call in to my GI, but am going to hold off on any food introductions until I feel better. The doctor insisted it would be fine to do all of this at once, but clearly it isn't fine. I love apples, but it's not like they are hard to avoid, so that's an easy one to take out of my diet again. Thanks for the tip on apples, Ii didn't realize that it was a problem food for acid, espeicially since the foods I usually think of as acidic (tomatoes, citrus) are fine for me. I think. Ok, off to think about something else before I start second guessing myself. Again. Thanks for your replies. The first reply made me laugh! All of the replies were very helpful! I appreciate your time and wisdom! Lisa
  9. I'm totally baffled as to what to even discuss with my doctor. Here's a short summary of where I've been: *Misdiagnosed with gastritis after suffering from stomach pain, which at the time I thought was heartburn. I know now that sharp pain under the left ribcage isn't heartburn, but that's what I thought it was back then. I was "treated" with nexium and diet (no spicy foods, no alcohol, no fried foods, etc). Got much, much worse. Regularly had D, black, tarry, loose stools, more pain. Joint pain continued, hormone issues continued (early menopause symptoms). *After 6 months of suffering, I was referred to a GI who did blood testing (3 tests plus total IgA), an endoscopy with 3 biopsies, a CT scan, and a colonoscopy. All were normal. Blood results were 0. The biopsies were totally clear. However, at this point I HAD developed actual heartburn! *I quit taking nexium. Aside from the pain in my stomach and the D for 3 hours most mornings, joint pain and menopause stuff, the rest went away. No more oily stools, NO MORE Heartburn!! Bad Nexium! *My GI doctor said "You do not have any of the illness which I treat." and dismissed me as a patient. *At this point, I took matters into my own hands. I quit eating any foods I thought were suspicious: gluten, apples, and honey. I felt 90% better. NO joint pain, no heartburn, but still had occasional mild stomach pain, an occasional D that I couldn't be sure was from cross contamination or some other food I had eaten. I had a few slip-ups that I was aware of, but it's so hard to draw that direct connection between the oatmeal I ate and the 4 days of D, brain fog and fatigue. Maybe I was just fighting some virus? *So my regular doctor referred me to a GI specialist at a big research hospital at a University a few hours from where I live. He looked at my biopsy slides again, and said there was mild inflammation in my stomach and in the join of the esophagus and stomach. (Duh, the nexium I was taking gave me heartburn!) For what it's worth, he did seem very knowledgeable about celiac and non-celiac gluten sensitivity/intollerance. He really thinks celiac is unlikely. He decides that my pain might be from the stomach acid and puts me on Zantac and gives me the go ahead to eat whatever I want. This was last week. I've been taking Zantac for 4 days, and I reintroduced apples (still no honey or gluten). I feel awful. I have heartburn every single minute. I have that horrible taste in my mouth, and my whole chest hurts. I've had a constant mild headache (known side effect). My stools are getting dark and oily again. The doctor's idea was that the histamine blocker in Zantac would help me reintroduce foods, but so far, not good with apples. So what do I do now?? Do I try wheat?? It seems so hard to draw any direct connections between symptoms and what I eat. There are too many variables! How long do I give the zantac? I've given up on apples to see if I feel better, and I don't yet. But, the apple thing seems really weird, right? I don't have problems with other high-fructose foods. Nor do I have much burping (except when I'm on a heartburn med!). The new GI doc also wants to re-do the EGD, but what else could he be looking for? The meds that make people "forget" don't work for me. I remember every thing from my first EGD. I really don't want to put myself through that in a hospital 2 hours from home to get more inconclusive results, you know? Any ideas/advice is welcome. I really don't know what to do, or if it's possible to make any progress with or without a doctor. There aren't any tests left to run! My food diary doesn't seem to be telling me much, either. Thanks for reading my long saga! Lisa
  10. I was just looking online for information about this rash. I have exactly the same thing. It looks the same, and your description is spot on. Unfortunately, I didn't have any spots last time I was at the doctor, so I've never gotten a doctor to look at it. I've been gluten free for awhile, but I made my family a gluten meal on Sunday, and sure enough, I was super itchy by the end of Monday. Today my torso is covered in itchy, angry welts. Please post an update if you've seen a dermatologist. I'm totally curious about what this might be. Thanks! Lisa
  11. Hi! Everything will be ok. I promise. My 7 year old daughter has IgE allergies to milk, eggs, peanuts, rice, potatoes, fish, beef, chicken and pork. She reacts to trace amounts and to skin contact (hives if she even touches the food). She's had life-threatening reactions to accidental ingestion (not often) and carries (and has used) an epi-pen everywhere. Despite the long list of foods she can't have, she is surely not deprived. Over the years, I've learned to cook many a delicious treat using her safe ingredients. At school, she has a strict rule that she only has food from home that she brings. All the adults and other kids know they can't offer my child food, and my child knows she can't accept any food from anyone but me. It's a little effort to keep up with the birthdays, holiday parties, etc, but it's really not so bad. School is totally manageable. As for take out, we don't do it. It works for many people, but just not for us. My daughter doesn't eat out, and on rare occasions (vacations, usually, maybe once or twice a year) when she has to accompany someone to a restaurant, she's been able to get a juice and brings her own food (usually something delicious and junky). It took awhile to get used to having to cook every night, but I have a few quick dinners up my sleeve that I can pull out when I need a quick dinner for everyone. If you asked my daughter if she wished her allergies would go away, she would say no. She's happy with her food, and frankly, happy she doesn't have to eat food she doesn't like just to be polite. She's also so happy to be healthy, she doesn't want to feel sick just for a food. Now, she's only 7, and the tough years are ahead of us where she wants to be like her friends, but she's never missed a social event that she wanted to attend, and I plan to keep doing whatever I can to make it work. Good luck! It's hard, but not impossible. (and the panic you feel will come and go!) And truly, my daughter is happy, well adjusted, and does not feel deprived at all. Lisa
  12. I wanted to chime in here. I'm a mom to a daughter with multiple food allergies. I'm the one with gluten issues. As a parent who had to face food issues with a child, I totally hear and feel your anxiety! I had a real serious adjustment period getting used to my daughter's food restrictions. You will find a way to manage for your family. My daughter was diagnosed 7 years ago and it does get better and it gets much much easier. Support groups like this one are fabulous and will give you lots of ideas on how to cope emotionally and how to manage it all in a practical sense. Hugs to you and your daughter. Once she is feeling well, you'll be really motivated and that will give you encouragement when the going gets tough. It's hard and I try to keep in mind that many illness have no good treatment. -Lisa
  13. To Scope, Or Not To Scope?

    If you are afraid of the scope, it's really not so terrible. The "conscious sedation" they use really will make you so relaxed that you won't care a bit about the scope. Most people don't remember the scope at all, and the nurse told me at mine that many people don't remember being at the hospital at all. One advantage of the scope is that they can look around and see if something else is going on. They can see other problems that might seem like celiac/gluten intolerance and will then find the correct treatment for you. Or you could get a definitive diagnosis of celiac, which has a specific treatment too! All good news, in my opinion. One disadvantage is that you could be like me, and get a negative biopsy (and no other issues found) and be left on your own. I'm trying the gluten-free diet, but it's hard to get compliance from family when they think it's "just intolerance, so we don't need to go overboard here...". I don't feel like my situation is ideal, but I don't regret doing the scope at all. Good luck. Lisa
  14. Several of your symptoms sound like allergic reactions to me. Did the allergist to comprehensive food allergy testing? If your allergist is not one who specializes in food allergies, you might want to find one who does. Your symptom list is long... I hope you find answers soon. I'm new here, and just figuring it all out too. Hopefully others who know more will jump in and offer their thoughts too. Lisa