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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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Eclara last won the day on June 16 2016

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  1. Looks like I had (negative) TTG-IGA and IGG done in 2012, but not until I had already been gluten free (without avoiding cc) for nearly 2 years. My rosacea is better than it was and I don't really expect it to improve more than this- it is less bumps and residual redness at this point and more hypersensitivity, flushing and extreme dryness. It does get worse with stomach flares but it also seems to be linked to the Sjogren's, whether it started out that way or not. I have no doubt at this point that it is autoimmune in nature for me. As for the SIBO, I have been through 5 courses of rifaximin in the last 2 years, one of which I just finished 2 weeks ago and was the wrong decision as it was very exacerbating for my stomach. I improved on the first courses in 2014, after which I was on a strict Paleo for about 8 months and doing much better. I got too low on carbs and my hormone levels went haywire so I got off Paleo and added in packaged gluten-free bread and cereal and did fine for a few months, then kind of got lazy and played it loose and wild and started getting into whatever didn't overtly claim it contained wheat or gluten. I got sick pretty fast and have stayed that way all year. I have been eating mostly bland things for a month and half- oats, kefir, bananas, eggs- but I'm not healing as fast as I had hoped. I know it could still be SIBO that needs a different antibiotic, or gastritis from trying out junk food, or a side effect of Sjogren's, or just plain IBS. Maybe I'm being ridiculous but I just had to ask because the question of whether or not I had Celiac never felt fully resolved to me.
  2. So what's the verdict on false negatives? Because I had my biopsy four years ago and it was negative, my IGA was ignored because it was always 10-20 points below the normal range- but my stomach has never completely recovered from the hellish 8 week pre-biopsy gluten trial I did in 2012 and I have been progressively more sick each year in new and exciting ways. Now I've been diagnosed with Sjogren's at 24. I plan to go back to actually watching for gluten cc instead of just eating whatever claims gluten-free status without certification either way but I admit I still wonder about Celiac each time a new digestive or autoimmune symptom pops up.
  3. I Screwed Up

    Thank you for the kind replies! I don't really tolerate many other meats or vegetables right now, which is why my diet is so limited. It's part of what I was hoping would improve- I'm dying to get sweet potatoes and cauliflower back especially! I also avoid dairy and soy. The only dairy I tolerate is lactose free kefir which I haven't been drinking the last few days because I wasn't sure if the probiotics in it would interfere with the antibiotic. Will a probiotic really do me any good while I'm taking something that kills everything? Won't all the good bacteria just be continually wiped away with the bad? I don't tolerate garlic but I will look into the mastic gum and caprylic acid, thanks!
  4. I have been as gluten-free as possible (living in a mixed household, have my own cookware) since my negative biopsy 16 months ago. Ever since the gluten trial I did beforehand I am intolerant of almost everything but especially grains. I eat about as well as can be expected. I'm on a kind of paleo I guess, all meat and vegetables and small servings of fruit, except with my food problems my meal plan tends to be breakfast: chicken with spinach, lunch: chicken with kale, dinner: chicken with carrots, heavily supplemented with bananas throughout the day. Shampoo, rinse, repeat. Sometimes I sneak some egg whites into the mix, sometimes I can't stomach the thought of more chicken so I just have the vegetables. Sometimes I just don't bother to eat at all. Things are definitely better than they were when I was eating gluten, but still bad. I keep losing foods, I'm bloated and nauseous, I have extremely bad gas and unpredictable, foul BMs that lean more towards constipated. I just feel generally unwell and I'm not sure why I'm not getting better. The last gastro I saw put me on rifaximin to see if it was some kind of bacterial overgrowth. I'm on day 9 (of 14) of the rifaximin, and it has worked in unexpected ways. I have less gas, and when I do have it it no longer smells like it could kill a man. Same with BMs. It also put an end to the maddening throat pressure I was having that I assumed was some kind of reflux. While my rosacea is still pink and flushy, the skin puffiness has reduced so much I look like a different person, and my skin has lost the orange peel texture. My ocular rosacea is no longer permanent, it shows up sporadically and generally goes away with eye drops. The skin on my body is less dry, bumpy and blotchy. My feet and hands no longer constantly glow bright red. The hollow, severely purple undereye circles I've sported for years have also started to improve drastically and my hair and nails are stronger and shinier. It took about three days of feeling weird and adjusting, but I noticed for a few days that my stomach felt a lot better, less 'full' feeling, especially just after I'd taken the pill. Not miraculously so, but I had really high hopes. Unfortunately, I made the horrible decision to try out (gluten-free) grains again a few days ago after reading on a forum that the rifaximin needed higher carbs and sugar to draw out the bacteria. And after all, if I wanted to permanently incorporate them into my diet, why shouldn't I get started while my system had a boost? It was a bad call and I knew it, I was just so desperate for real food that I threw caution to the wind. It immediately triggered my binge eating (which I haven't struggled with at all since going grain free) so I went into grain overload. I felt the way I did when I was doing the gluten trial- extremely foggy, confused, lethargic, achy, and bloated to the point I was in so much discomfort I thought I could die. At least I didn't throw up this time. It was the worst I'd felt in ages and it took me 3 days to get off of them again. I'm horrified with myself and I think I've caused some damage. Worst of all, I think what I've done has set me back too far for the rifaximin to handle. I'm back to eating my usual but I keep feeling really ill, like it's undoing everything that's improved since I started taking it. I'm so scared. I know that if this course ends and I'm not cured, my gastro will immediately move on to "see, you have IBS! let's get you on some antidepressants". She said as much last time we met, the rifaximin was a last ditch effort. I just feel so lost.
  5. Upper stomach symptoms for me means extreme bloating and pressure, sometimes nausea, and sometimes cramping. I sometimes bloat out so far that I can't fit into my pants comfortably anymore. It usually feels like throwing food into a balloon that's stretched to capacity, and it often feels like the stomach lining itself is very irritated and sore. Overall I'd say it's very similar to if you ate a meal that was waaaay too big for you and had to sit and ride out the discomfort until it digested fully. I was tested for H. Pylori during my endoscopy, and it came back negative. I am taking probiotics and digestive enzymes. I don't think anyone has checked for parasites, but I'd have to check my files to be sure. I've tried SCD and food combining. The reason I have been eating what's listed is because they feel the least harsh on my stomach. Everything else causes more distress, even plain boiled chicken or bland cooked vegetables causes more distress than lunch meat. I will admit that I think when it comes to the chicken, a large part of it is mental. After eating it twice a day every day for 9 months, just the thought of eating it again makes bile rise in my throat. It's like how eating a food that tastes terrible to you can make you feel sick. So that one's on me, I'll try to see if I can find another way to cook it that will make it more tolerable. I don't think I'm eating a specific food that's causing the stomach symptoms currently because it is every food that does it, it feels like my stomach is inflamed or damaged in some way, and I really think it began with the gluten challenge. The most hilarious thing to me is that my original stomach complaint that brought me to the gastro initially (lifelong terrible constipation and lower stomach pains that literally felt like knives stabbing into me, which would leave me curled up with a heating pad for hours or days at a time and sent me to the emergency room on more than one occasion) have completely cleared up since going 100% gluten free. It only flares up when I get glutened or eat one of my other intolerances. I went to see an internist today and she got very exasperated with me and said I had IBS, that "some people's colons just don't work right" and "if no one's fixed you yet after all this time, no one is ever going to cure you" so I'm hovering between depressed/furious right now. She also laughed in my face when I told her I don't eat soy in large part because of my hypothyroidism. Thank you all for responding to me! It gets so overwhelming sometimes to have to deal with all of this, it's a huge weight off my shoulders to have someone listen and understand.
  6. I was gluten-lite for about two years before I did an 8 week gluten challenge for an endoscopy in December. I had horrible symptoms the whole time, but my biopsy came back negative. I went gluten-free the day after the endoscopy, so it's been 9 months completely gluten-free. It took awhile, but most of the symptoms cleared back up. But I developed upper stomach symptoms during the trial that haven't gone away and have gotten worse and worse. I kept losing foods- dairy, then eggs, then grains, then fruit...I got to the point where I was eating plain lunch meat for half of my meals, and peanut butter mixed with kefir for the other half. Now I can't eat anything without bloating and getting nauseous, and I can't figure out what's a legitimate intolerance and what's just my stomach. My stomach has shrunk so much I can eat maybe a fourth of what I could before, which absolutely doesn't help. I've been to three gastros and one normal doctor, and none of them have believed me when I told them eating gluten triggered this. None of them even believed me when I told them I was gluten intolerant, or that I was having trouble with other kinds of foods. One diagnosed me with acid reflux and put me on acid reducers, which made it worse. One diagnosed me with bile reflux and put me on Carafate/sucralfate, which seemed to help for a week before it stopped doing anything. One diagnosed me with IBS and suggested anti-depressants, which I (somewhat) politely declined. The last one (the one who actually told me to do the gluten trial in the first place) literally shrugged and told me to "keep doing what you're doing". My CT scan came back normal, the ultrasound of my gallbladder, liver, and upper and lower intestines came back normal, my HIDA scan came back at 80% with no sign of bile reflux, and the only thing that showed up on my colonoscopy/endoscopy was "mild chronic gastritis", which I was later told was too mild to cause symptoms? I'm losing my mind with this. I've been searching for a doctor to go see, but I just end up giving up after awhile because I really don't know if I can handle another doctor talking down to me and dismissing everything I say, and I don't know how to determine who will actually listen. Even my mom has now started to question if it's "in my head". I don't even know what I'm asking. I just don't know what to do. I've stopped believing that I'll get better and I'm extremely depressed, I can't do this anymore! What should I do? I feel so lost.
  7. I've been feeling extremely off for the past week or so. Originally, I thought it was leftover from agitating a different food intolerance earlier in the week, but the symptoms are very different. The only thing I changed in my diet was that I started using quite a lot of Archer Farms ground ginger. I read online that they sometimes add small amounts of flour to ground ginger to keep it from clumping, but the only ingredient listed is ginger. I tried to email Target, but they have a massively confusing contact system and I couldn't find a category for food inquiries. Has anyone here had an experience with this product?
  8. Thank you for the replies! They say they're certified gluten free, and their policy says: "All of our products and processes are inspected, tested and certified gluten free by the Gluten Free Certification Organization. Additionally, suppliers are required to provide negative-allergen documentation to guarantee their ingredients are gluten free. We also verify these results using a third party laboratory." They seem pretty legit, but I'll definitely email them to be 100%. I also don't think oil is the problem for me, as I eat high oleic safflower oil-based vegenaise by the jarful with no issue.
  9. I had a TERRIBLE reaction to the "Food Should Taste Good" sweet potato chips, and I'm not sure why. Ingredients: Stone Ground Corn, High Oleic Sunflower Oil and/or Safflower Oil, Sweet Potato, Corn Bran, Evaporated Cane Juice, Sea Salt I've eaten these chips on several different occasions, but I always had something else I blamed the reaction on. Twice I thought I had been glutened, but this past week it would have been highly unlikely so I looked back over and realized they were all times I had eaten these chips. The reaction each time started out as strong brain fog, which grew worse every day and made me really angry and severely depressed, to the point of suicidal ideation. I got extremely tired and had bad stomach pains, bloating, muscle pain/weakness and diarrhea. I took a charcoal yesterday while in agony after eating the chips, and half an hour later the depression began to lift. Today was the first day I didn't eat them and my stomach is still a little messed up but overall I'm okay. But now I'm completely terrified at how much it affected me mentally. I was so depressed I could barely speak. I haven't felt that bad in years- I wrote a suicide note! I'm really worried about how completely it had me under its spell, and I'm afraid to try new things for fear of what it will do to my mental state. I don't even know which ingredient it was that did it, but I'm assuming either sweet potato or corn. How is it possible that food can do that to a person? Has anyone else experienced this? How do I determine which ingredient it is without putting myself at risk?
  10. Thank you so much for your response! Unfortunately, that is outside of my driving range as I don't have a license and the only person available to drive me can generally only take a couple hours of out his day. I will definitely make note of it for future reference though!
  11. Anyone have any recommendations for gluten intolerance and celiac-educated doctors, particularly gastros, in the Twin Cities and the southern surrounding areas? Basically anywhere between-ish Lakeville to Minneapolis. I've been to three doctors in the MN Gastro chain so far, and I don't know if I just happened to pick the worst ones but they were enormously unhelpful. But if you have a specific doctor from that chain, I'd be willing to try going there again! I also know the Mayo is nearby but I don't think I would get in because my symptoms are not as severe as other people on their list, and I've already had an endoscopy which came back negative. I just need someone who won't immediately dismiss me when I tell them I have lasting symptoms from my gluten trial 9 months ago. So far they've all taken one look at my IGA and biopsy results and told me there was no correlation between gluten and my symptoms before wildly attempting to push drugs at me. Any recommendations would be a big help! Thank you.
  12. Glutened Or Gastritis Flare?

    Thank you all for the replies! I agree that it was probably the gluten, although the wine probably didn't help with the stomach pain. I guess I've learned my lesson about slacking now! I'm doing a little better today, the drugs from my wisdom tooth extraction are masking most of the other symptoms, so there's a plus! Weirdly, the glutening actually turned out to be a bit of a life saver for me today, as the stomach discomfort made going without food for 12 hours before the extraction much easier and the brain fog (which, among other things, dulls most of my emotions and make things feel unreal) pretty much killed any pre-surgery jitters I would absolutely have had otherwise and made it all go even faster. And now the painkillers have wiped out my muscle pain, so I guess if I was going to get glutened, now was a pretty good time to do it. Especially seeing as I've got the next few days off from life and solid foods anyhow. Killed two birds with one stone, as it were! Thanks again!
  13. I went on a road trip this past weekend, and had my first ever drink of alcohol on Sunday night. It was Arbor Mist wine, which from my research appeared to be gluten free. I didn't have much, maybe 2, 2 and half little glasses. I didn't really feel the fun part of it, all it did was flare my rosacea and make my brain fog worse and my stomach a little burny. (It was disappointing, really, after all that build up!) I knew it was a bad idea as I was diagnosed with chronic gastritis in December and have been doing so much better lately because I've been babying my stomach, but I'm turning 22 in 4 months and it was bothering me that I'd never tried anything at my age. Anyway, I felt ok the next morning, my stomach felt a little irritated but nothing too bad, and it got better after I ate breakfast. Late afternoon I started feeling weird and out of it the way I had when I was eating gluten, but at the time I figured I was just exhausted. I got home Monday night and felt a little sick after eating dinner. When I woke up Tuesday, I felt TERRIBLE. Weak, shaky limbs, dizziness, brain fog like I haven't had in months, anxiety and strong depressive outbursts, extreme nausea, urgent BMs. I took charcoal pills which I think prevented me from throwing up, and I've been sticking with broth and mashed bananas and easy foods like that. But now I'm not sure what caused it! I packed all of my own food for the road trip, but there were definitely opportunities for me to get glutened. Among other things, the friend I was riding with was eating fried chicken at the wheel and I was not nearly as careful as I could have been, especially towards the end. She also took a drink out of my glass after eating pasta and we shared a bag of grapes after she'd eaten a bagel. In your opinion, is it possible this is all just due to a gastritis flare up from the wine, or have I been glutened? Or could it a weird, delayed reaction to something in the wine? The mental and shaky symptoms seem odd for just gastritis alone, but I can't really be sure. I haven't really been glutened since going gluten-free so I'm not sure how sensitive I am, or how I react. It really sucks, I'm getting my wisdom teeth out tomorrow morning and I have all this on top of it! No good at all.
  14. Hello! To recap: I was gluten-free at the suggestion of my then-doctor, but was not careful and not avoiding CC. I did this for about one to two years. I did a gluten trial from mid-October to early December in 2012. Biopsies all came back normal but the trial made me very very sick, triggering gastritis, fibromyalgia, a spike in my thyroid levels, and about a dozen new food intolerances (among other things) for months afterwards. I am about 8 months gluten free now and the fibro FINALLY went away and I don't curl in the fetal position for hours after I eat anymore, so progress! Unfortunately I've been stalled at this point for months now and I'm drastically undereating, which is no good, especially now that I've taken up jogging. I am still unable to eat any kind of grains whatsoever without triggering stomach cramps, diarrhea or really bad gas. Basically every time I eat my stomach bloats and feels uncomfortable, no matter what kind of food it is. I have to eat small amounts of food at a time because my stomach revolts if I eat what would have been a normal sized meal for me before. I'm getting really angry, these were not problems I had before the gluten trial and they are taking over my life now! I went to see gastro number 3 today and when I asked her why all of this was still happening so long after the trial she said, "Your symptoms could only be from celiac, but you can't have celiac because with your symptoms your entire intestine would have had to have been very damaged and smooth like a pipe. If you have gluten intolerance, you shouldn't be having symptoms from the trial at all anymore so it has to be unrelated." I don't know why my intestines would have to be "smooth like a pipe", my symptoms are pretty average or even below average in terms of severity- they're just extensive. I brought up spotty damage and she again said that with my symptoms it would HAVE to be really obvious, and that NCGI just can't cause problems once you stop eating gluten. She also didn't care to hear me try to explain how sick I was during and after the trial. Anyway, I am now 0 for 3 in the category of 'gastros who listened when I told them the gluten trial triggered long-lasting issues'. At least this one didn't tell me it was IBS or depression. I asked for gallbladder testing, which she granted in the form of an ultrasound later this month. She also prescribed me carafate because she suspects bile reflux (but WITH ABSOLUTELY NO RELATION to the gluten trial). Does anyone have experience with carafate? Is it any good? Has it affected your thyroid medication at all? There was a warning in the pamphlet about decreased effectiveness of thyroid medication. I'm on Armour. I mean, I'm glad to be getting my gallbladder checked out anyway, but I left feeling very disappointed. I had too much riding on this one appointment, I guess. I didn't even get through my whole list of symptoms! I had so many unanswered questions when I left, it was really infuriating. I'm thinking three strikes is enough for gastros. Any recommendations for other types of doctors who help with weird stomach etc. issues? Also, can anyone recommend a good probiotic? I was going to ask at my appointment but it completely slipped my mind. Wow, this got long and ranty and little disjointed. Thanks in advance!
  15. Thank you for your reply! I was on 50mcg of levo for 3 years, and I'm on 30mg of Armour now. Do you think I could be having hyper symptoms this fast? I think it's only been five days and I had symptoms after I took it the first day.