Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×



  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Leaderboard

  1. kareng

    kareng

    Advanced Members



  2. trents

    trents

    Moderators



  3. Scott Adams

    Scott Adams

    Admin



  4. cyclinglady

    cyclinglady

    Advanced Members



Popular Content

Showing content with the highest reputation since 01/12/2010 in all areas

  1. IrishHeart

    Newbie Info 101

    You have been diagnosed and you do not know what to do next. First, do not panic! and Welcome to the Forum! I have posted this information in pieces and parts on this site during the past year so many times and some newbies suggested it would have been helpful if they had seen it ALL --right away after they were DXed.... so, I thought, why not paste...
    39 points
  2. Scott Adams
    Celiac.com 07/25/1996 (Updated: 12/29/2020) - Like many people with celiac disease (it's an autoimmune disease and not a wheat allergy or the same as gluten sensitivity, gluten intolerance, or sensitivity to gluten), I spent a lot of years...
    30 points
  3. Scott Adams
    This is a list of unsafe and forbidden ingredients for those who have celiac disease. We keep it up to date, and feel free to use the comment field below to suggest any changes or additions. A Abyssinian Hard (Wheat triticum durum...
    14 points
  4. psawyer
    This particular forum on celiac.com is described on the main page thus: It is not intended to be about products that are labeled gluten-free. If it were that simple, we would not need this discussion forum. Here, in the Gluten-Free Foods, Products, Shopping & Medications section, we talk about products that are not labeled gluten-free, but...
    11 points
  5. Scott Adams
    I am often asked about which supplements I take, so I'm sharing it here. I think you'll find a big variation of what supplements different people on this forum take, but here is a breakdown of the many I take. This regimen has worked well for me, but it has take many years for me to add and remove different ones. Also, all of this list may not apply...
    9 points
  6. Scott Adams
    Celiac.com 02/27/2019 - Celiac disease is an autoimmune condition with numerous symptoms, and associated conditions. People with celiac disease often have gastrointestinal symptoms, including upset stomach, abdominal pain, gas, bloating...
    9 points
  7. paisleydaisy
    Hi! Just a positive note from someone 4 years into the gluten-free diet who had questions about worsening food intolerances, no change in lifelong insomnia and ongoing panic attacks (which came out of the blue a few years prior and lead to full blown agoraphobia quite suddenly 'for no reason'). It ALL went away. It took a while but all went away and feels...
    8 points
  8. Scott Adams
    For those just starting out, please see this article: And this post, which is rather old, but mostly still useful:
    7 points
  9. Scott Adams
    Celiac.com 12/21/2024 (Updated. originally published 02/20/2015) - For those with celiac disease, even trace amounts of gluten can lead to severe health consequences, including digestive distress, nutrient malabsorption, and long-term...
    7 points
  10. Kelly Carter
    Celiac.com 03/22/2019 - I'm going to talk about my journey through the Nexvax2 trial. It is a clinical trial to study the effectiveness of this drug to prevent mucosal damage due to cross contamination. There are 4 phases to this trial...
    7 points
  11. Jefferson Adams
    Celiac.com 08/27/2024 - With increasing awareness and diagnosis of celiac disease and non-celiac gluten sensitivity, strict adherence to a gluten-free diet is more critical than ever to prevent symptoms and long-term complications. However...
    6 points
  12. Scott Adams
    Celiac.com 04/15/2023 - Celiac disease is a chronic autoimmune disorder that affects the small intestine, triggered by the ingestion of gluten, a protein found in wheat, barley, and rye. One often overlooked consequence of untreated and...
    6 points
  13. Scott Adams
    Celiac.com 11/10/2022 - If you're new to this whole celiac disease and gluten-free eating thing, then this is your welcome-to-the-club pack of sorts from Celiac.com. While eating gluten-free can improve your health, I must emphasize...
    6 points
  14. ravenwoodglass
    I developed DH as a young child after being impaled. It was one of my first celiac symptoms. At that time I was eating lots of cereals and breads that were fortified. There is no way I was niacin deficient. Unfortunately we have two posters who seem to think that niacin is a cure-all for celiac. I do hope newbies are not mislead into thinking a few vitamins...
    6 points
  15. Ennis-TX
    .....OK NOW, I blunt ass%$@# coming out here. I feel like I need to go punch your lights out drag you to my house and force you on the gluten-free diet for you to heal. I would also show you a social life can exist. We would make meal prep boxes, shakes bars, our own breads live a normal like bloody diet with gluten-free versions of foods. Show you that YOU...
    6 points
  16. mushroom
    I personally feel that we should be happy that they voluntarily let us know about the shared equipment (or facilities) ; since the equipment is thoroughly cleaned between runs, they are not obliged to. I worry more about the companies that change the ingredients without letting anyone know, just to keep you on your toes A market I buy from makes...
    6 points
  17. IrishHeart
    I'm with you, Karen. Can't seem to get people to understand the following: Gluten FREE eating means Gluten FREE. FREE of GLUTEN. ENTIRELY. It doesn't mean "maybe, kinda, sorta" It doesn't mean dabbling in it or "gluten lite" it doesn't mean 4 out of 7 days and on holidays we take breaks. It doesn't mean use non-gluten grains, but...
    6 points
  18. ElseB
    Gastroenterologist walks into the room, looks at my chart and says: "You have Celiac Disease. Go look it up on the internet. Come back in 6 months". Then walks out. That was the appointment where I was given the diagnosis. Another doctor: "since the Celiac came on so quickly, I'm sure it will disappear just as quickly."
    6 points
  19. knitty kitty
    I went through very similar symptoms, being misdiagnosed and told it was all in my head for most of my life. It's not all in our head. It's what's NOT in doctors' heads. Doctors don't think of vitamin deficiencies as causes of symptoms like we have. Doctors are trained to prescribe pharmaceuticals in medical institutions funded by pharmaceutical companies...
    5 points
  20. Jefferson Adams
    Celiac.com 03/27/2023 - Celiac disease, a chronic inflammatory disorder of the intestines, affects about 1% of the world's population. Celiac disease causes diarrhea, abdominal discomfort, bloating, flatulence, and, in rare cases, constipation...
    5 points
  21. Sevans10
    I am a school nurse (Pre-k-8th grade) and a parent of a child diagnosed with celiac disease in 4th grade (6 years ago). I have gone through this battle many times. When my daughter was a student here, there were strangely 7 kids with celiac disease out of 500. (4 in her grade of 50 kids...which is odd...but seemed to help my case). In 2009 revision...
    5 points
  22. HectorConvector
    I'm just reviving this thread to update with *factual* information. Not assumptions, or anything vague but known facts. 1). results of an MRI scan show a herniated disc in the lower spine area. However, the letter from the doctor says they don't believe this explains the symptoms. However, the symptoms were very severe and violent when I did weight training...
    5 points
  23. Wheatwacked

    Worried

    Natural tendency to fear worst case. So many on this forum were misdiagnosed only to learn it was Celiac Disease all along. To really get a scare look up "200 symptoms of Celiac Disease". It can mimic anything because of autoimmune response and vitamin deficiencies. Once you start GFD and or correcting malnutrition you start healing so you will need...
    5 points
  24. Scott Adams
    Celiac.com's safe food and ingredient list has been compiled and maintained for nearly 25 years. We keep the list updated with any additions or changes. Feel free to comment below if you believe something should be added to it. A...
    5 points
  25. GF-Cate
    Hi Turtleseaba, I don't know if it would help (and maybe you have already tried this), but perhaps a phone call (or email) to the pantry manager/ director/lead volunteer on a day that is not a distribution day to talk, explain your situation and explain about celiac and ask if it's possible to receive safe food and/or have gluten-free food service aside...
    5 points
  26. Alfrieda
    Hello, I have found everyone's responses very helpful and it's reassuring to know I am not alone in this journey. I am now in week 2 of cutting out dairy in addition to the gluten. Also, starting this week I am eating only what I make for myself. I have a glimmer of hope as I do feel as though my symptoms are improving. Thank you to all of you for the...
    5 points
  27. trents
    I have a suggestion for you. Sit down and develop a list of more detailed, targeted questions you would like to have data on that would provide a framework for people's responses. I feel like your current questions are too vague and too general to be very helpful to people trying to provide input for your writing project or to you trying to distill and...
    5 points
  28. Ennis-TX

    Just looking to talk

    I was and am almost completely ostracized by my family and friends.....I find this forum to be more of my family now days. I actually feel more welcome here. >.< does not help I was adopted as a baby but when the rest of the family learned I had a genetic disease like this on top of autism...I was dropped and ignored pretty much and everyone stays away...
    5 points
  29. manasota
    Dear egs1707, You will not like what I have to say. But, like Squirmingitch (whose entire post I agree with), I am only trying to help you. 1. You have already been given all the best advice possible by the nicest people. 2. You seem unable to accept this advice; so I won't focus on being nice. 3. I believe you are clinically depressed...
    5 points
  30. Jestgar
    Bottom line, if it bothers you - don't drink it. If you are super sensitive, or early in the gluten-free process, you might want to avoid drinking in general, or at least some of the wines others have had issue with. You can test specifics for yourself, when you're up for it.
    5 points
  31. JNBunnie1
    I will repeat myself. We need to be able to come here and report something made us sick, safely, without being blown off. I have lost count of the number of people who have reported a gluten reaction to wine, and they deserve better than to have the 'experts' on this board tell them they are imagining it. Everyone reading can see both sides of the issue...
    5 points
  32. kareng
    "Domino's and the NFCA found that while the crust is certified as gluten free, current store operations at Domino's cannot guarantee that each handcrafted pizza will be completely free from gluten," the company's news release said." I hate these pseudo gluten-free menus. It confuses the non- gluten-free people who think we can eat at these places...
    5 points
  33. Takala
    I had a positive for the brain lesions, aka "bright spots," which were not the same type as seen in MS. Had quite the falling out with the nasty, idiotic neurologist who found this and still insisted it had nothing to do with my diet, as she had spent the past year testing me for "other things" instead of what I told her I already had and had been tested...
    5 points
  34. trents
    @Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found...
    4 points
  35. knitty kitty
    The "why?" can also be related to the nutritional deficiencies that most Celiacs develop, not only before diagnosis, but afterwards when these deficiencies are not corrected or worsen on the gluten free diet.
    4 points
  36. icelandgirl
    Hi Ginger! I use either Udi's or Canyon hamburger buns... My family loves both. Depending on what I'm in the mood for I either 1.wrap them in foil and warm them in the oven, 2. put them on a baking sheet opened up (this toasts them nicely or melts cheese in top... Also depending on what I'm in the mood for), 3. Add them to the grill when the burgers...
    4 points
  37. jordan-fre
    Imo from my own experience, suggestive should be treated as conclusive. I was given the suggestive diagnosis 13 years ago and just last week got news that my celiac disease is not in control (Marsh 3, active celiac). While I have been gluten-free, I was not diligent about cross-contact. In the back of my mind, this suggestive diagnosis I think gave me some...
    4 points
  38. trents
    I think this excerpt from the article is very important: "The 2022 report reveals a greater sense of urgency from gastroenterologists versus the 2021 report. Indeed, the number of respondents in the 2022 survey who say that their celiac patient load has increased in the past year, is up by 60% over 2021." 60% increase in celiac patient load in one year...
    4 points
  39. Jefferson Adams
    Celiac.com covers relevant news about issues related to celiac disease and gluten-free food and living. To date, we have not covered news of the January 6th riots at the Capitol, simply because doing so without any relevant celiac disease or gluten-free angle would not be in keeping with our mission. However, the fact that the publisher of the largest...
    4 points
  40. GFinDC
    The mystery effect upregulated genes in celiac patients will protect celiacs from the zombie virus!
    4 points
  41. kareng
    Einkorn is a type of wheat. It contains a lot of gluten. It is not for people with a medical need to be gluten free - such as Celiacs.
    4 points
  42. cyclinglady
    Joe, Your doctor can check you for vitamin deficiencies (lab test), but more importantly, you need to have a serious conversation with your doctor about your anxiety. It seems pretty high from what you described. You just might need medication for a while and you might see some benefits from taking it. Talk to your doctor. In the meantime,...
    4 points
  43. notme
    amen to this - show of hands of who found this out the HARD WAY...? this past thanksgiving, i did everything gluten-free - finally perfected my mom's stuffing, brined my bird, found gluten-free fried onions for that green bean casserole that i don't even like (lolz - everybody: suffer! hahahahaaa) and outlawed those crescent rolls. nobody died! everybody...
    4 points
  44. Beverage
    Food prepared in other people's gluten kitchens is NOT SAFE if you have Celiac's. Salads or veggies, any of that, can all be contaminated from their counter, their utensils, wooden spoons, non-stick cooking pans, their hands, any ingredients they used in make gluten containing food. If they taste what they have made and use the spoon again...I know...but...
    4 points
  45. Sienna2013
    Parent of two celiac kids here. You are getting great advice; here are some things we've found helpful: - Give some real thought to taking the entire house gluten-free. It's just not worth the stress, for me, of worrying about cross contamination. Also, your other kids are at higher likelihood of having celiac disease, so you may end up 100% gluten...
    4 points
  46. tspiggy
    Hello, fellow celiacs! It's been a long time since I last prowled this forum, newly diagnosed, terrified and looking for answers that my doctor couldn't provide. A wise soul with the user name Irish Heart told me at the outset to not let the disease define nor confine me. In the five years since my dx on 10/11/12 I've taken her advice to heart. With...
    4 points
  47. Megamaniac
    Hi this is my first time commenting but I just had to. I too get chest tightness. I have had it flare up several times with no answers. I was diagnosed with celiac about 6 months ago and am pretty confident this is a glutening symptom for me. Last month it was so bad... Started with random chest pains for a couple days then chest tightness that last for two...
    4 points
  48. Scott Adams

    Taco Shells

    In general using your gut to decide if something is gluten-free or not isn't the best approach, nor is it at all accurate. You could simply have gotten a bug and the symptoms appeared around the time you ate this meal...but I'm not trying to diagnose you here...
    4 points
  49. greenbeanie

    Internal Tremors

    Has your magnesium level been checked? I had this kind of internal shaky feeling, and also hand cramps, for years. Another forum member recommended magnesium, and it made all the difference in the world. Come to find out, a blood test from when I was in the hospital years ago had showed magnesium deficiency, and the doctor hadn't even told me about it. I...
    4 points
  50. vawksel
    I'm sorry that I wasn't very clear :-). There is no gluten in Marijuana. I was smoking Marijuana to help with the symptoms of Gluten Intolerance/Celiacs. Marijuana greatly eased the anxiety that I had from eating bread. Now that I've been gluten free for a few months, I tried quitting pot and am finding it 100% doable. Before when I ate bread and...
    4 points
  • Popular Contributors

    trents
    cristiana
    Scott Adams
    cam6

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,762
    • Most Online (within 30 mins)
      7,748

    Deborah Bolek
    Newest Member
    Deborah Bolek
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Pat B
    • Scott Adams
      Thanks for this update, and it is scary that drug manufacturing is being outsourced to India, a country that is notorious for having very little, or extremely relaxed business regulations. 
    • Scott Adams
      Just so you know GliadinX is not supposed to be used in place of a gluten-free diet, and may only be able to break down small amounts of gluten in the stomach. Small amounts might mean some wheat bread crumbs on your scrambled eggs at a restaurant. I'm not sure how your taking it, but I can say that I used to get glutened ~30% of the time when eating out, but now if I take a couple of GliadinX shortly before I eat a restaurant meal I no longer have issues, even though I suspect that the cross-contamination issues are likely still present in the restaurants I'm at. It won't work with large amounts of gluten, which they disclose on their website--and full disclosure, they are a sponsor here, but that is not why I'm responding.
    • Scott Adams
      No everyone with DH has issues with iodine, but some do, so it's good to be aware of this just in case you fall into that group.
    • Scott Adams
      @Parkrunner Your journey with undiagnosed celiac disease highlights how easily this condition can be overlooked, especially when symptoms are mild or mistaken for other issues. It’s frustrating that it took decades—and serious complications like osteoporosis—before getting answers, but it’s inspiring to hear how much your health has improved since going gluten-free. The fact that you’re running again, sleeping better, and avoiding medications in your 70s is a testament to the power of proper diagnosis and dietary changes. It’s also a good reminder that celiac can manifest in so many ways (like your arrhythmia, muscle cramps, and night sweats) and that food intolerances, like lactose, often go hand-in-hand. Your experience gives hope to others—even after years of undiagnosed damage, healing is possible. Keep enjoying that gluten-free, active life—you’ve earned it!
×
×
  • Create New...