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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. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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...
    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. Jefferson Adams
    Celiac.com 04/08/2023 - Looking for a fast food French fry that is gluten-free, and safe for people with celiac disease? French fries from Burger King and many other fast food restaurants are not considered 100% gluten-free and safe for...
    4 points
  35. Scott Adams
    The following detailed explanation of serological tests for celiac disease was written by Tom Ryan, Technical Service Specialist, INOVA Diagnostics, Inc. There has been a lot of discussion about serological testing for celiac disease...
    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. MADMOM

    proud of my healing

    just wanted to share that i’ve been on my gluten-free journey now for 22 months! i was diagnosed in Dec 2021 with a marsh score of 3-4 flattened villi - i recently saw my GI dr for a blood test to check my levels such were in the 200s and can proudly report that both my levels are in the normal range and come up as negative in my system - 11.2 and 11.6 ...
    4 points
  38. knitty kitty
    Welcome to the forum, @Beck123! Longtime DH sufferer here. I had to remove everything dairy from my diet. Not only am I lactose intolerant (I can't digest the sugar in milk, lactose), I am sensitive to the protein in milk, casein. Not only does milk cause continuing inflammation and damage like gluten, dairy is high in iodine. I also found...
    4 points
  39. jess-gf
    I thought it might be fun if we had a thread where we shared what we're cooking up for dinner:) I am not an experienced cook so coming up with gluten free menus for me and my boyfriend feels like a challenge. It's also weird since I only started eating meat since my diagnosis, so I have 0 experience preparing meat. Tonight I'm going to try that Tinkyada...
    4 points
  40. cyclinglady
    Dr.Joseph Murray (Gastroenterologist at Mayo Clinic) was interviewed by The People's Pharmacy. His recommendations for celiac disease patients: COVID-19 infection can present as GI symptoms, such as diarrhea, abdominal pain, bloating, and loss of appetite. Don't assume your GI symptoms are from gluten exposure, get tested for COVID-19. Celiac disease...
    4 points
  41. MisterSeth
    you're not going to like it but those 2 slipups were enough to undo much of the work you were doing. the standard estimate is 3 months before you heal up with some people taking longer and some people (especially small children) recovering in a week. since you're shrinking and that MUST have something to do with caloric metabolism you probably have some B...
    4 points
  42. cyclinglady
    I get your ranting! It is hard to remain gluten free, but it is doable and you can heal (I did!). Try to think of implementing strategies that can keep you safe and still experience fun, social situations. When I go out for coffee, I play it safe and just get coffee and add cream. I still get to hang with my friends. I always keep a cereal type...
    4 points
  43. kareng

    Not Healing

    I don’t see any rudeness from anyone toward you. I just see people with lots of experience as Celiacs trying to help. Why scare people or make their lives harder than it needs to be? Most people cannot just replace the whole kitchen and appliances. And yet, they heal.
    4 points
  44. Kelly Carter
    Celiac.com 07/22/2019 - I was thinking...the significant others of someone with celiac put up with a lot. They endure the constant discussions at every social gathering about celiac disease. New social contacts mean an explanation...
    4 points
  45. cyclinglady
    Great news! I have have joined the “Peter club”! My villi are healed! The gluten free diet is working! I was diagnosed around 4/2013 with only a positive DGP IgA and a Marsh Stage IIIB (moderate to severe villi damage). My main symptom was anemia which I recovered from in just a few months with iron supplements. Minor symptoms persisted the fir...
    4 points
  46. ravenwoodglass
    Thank you so much for posting this. I am another person who suffered for many, many years with DH that was misdiagnosed repeatedly. I developed DH about age 7 and suffered until my late 40's being told it was everything from 'poison ivy in my blood to atopic dermatitis to 'pickers acne. After a year or so gluten free I had clear skin for the first time in...
    4 points
  47. 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
  48. Gemini
    How can you possibly expect anyone who isn't a Celiac or gluten free to be experts on this? I am not an expert on the diet to control diabetes or any other range of medical problems. It is up to the individual to learn about their condition and requirements for the diet, not the rest of the world. I see this all the time on this forum. It's fine to ask...
    4 points
  49. Jestgar

    Glutened By Vapors

    I don't think the semantics are relevant here. You got sick. You identified the situation that made you sick. I'm guessing you will avoid such situations in the future. In the end, it doesn't matter what anyone else says, or does. You are responsible for your health, and you seem willing to take that responsibility seriously. You're doing the right...
    4 points
  50. Stu
    There are definitely different levels of sensitivity to gluten. True story: I go to the doctor's office. The nurse/receptionist hands me a pen and clipboard, and I take a seat in the waiting room to fill out the forms. Within a minute or so, I get a nasty tin-foil taste in my mouth and my lips begin to burn. First stage of gluten exposure? Nah... Couldn...
    4 points
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    • Manaan2
      I realize I'm super late in the game regarding this topic but in case anyone is still reading/commenting on this one-does anyone who is especially sensitive have their personal observations to share regarding Primal Kitchen brand?  My daughter was diagnosed almost 2 years ago with celiac and within 6 months, her follow up labs were normal and a year later vitamin levels significantly improving, but we are still battling GI symptoms; particularly, constipation, so much that she has been on MiraLax every day since she was 3.  We've managed to get her down to a half cap every other day but without that, she continues to have issues (when she has a known, accidental ingestion unfortunately it takes a lot more MiraLax and additional laxatives to help her).  I was searching for something else and found this and am wondering if anyone has any specific comments regarding Primal Kitchen.  I feel like we are so incredibly careful with diet, logging diet and symptoms to look for patterns (we've had multiple dieticians help with this piece as well), not eating out, contacting companies and of course, there is always room for improvement but I'm running out of ideas regarding where her issues could be coming from.  Even if the Primal Kitchen is contributing, I'm sure it's not the only thing contributing but I can't help but think there must be handful of things that are working together and against her.  The ingredients list distilled white vinegar, but also white wine vinegar and balsamic, then "spices" which I'm always cautious about.  However, after contacting the company, I felt more comfortable allowing her to consume their products but over time I've realized that the front-line customer service support people don't always provide the most accurate of information.  Thanks for reading to anyone that does.   
    • Bebee
      Thank you knitty kitty!!  I appreciate your help and knowledge!
    • knitty kitty
      Welcome to the forum, @Bebee, Yes, Celiac Disease has genetic commonalities with MS, hypothyroidism, arthritis, Reynaud, and rosacea.   Usually a gluten challenge is done before endoscopy with biopsies taken,  however I would not recommend a gluten challenge before endoscopy with biopsies for you since you have been gluten free for so long and have so many concurrent autoimmune diseases.   You can still have the endoscopy with biopsy samples taken now.  After several months with dietary changes, you can have another to compare results and check that intestinal health has improved.   You can get a genetic test for Celiac disease which shares genetics with other autoimmune diseases that you have.  Eating gluten is unnecessary for genetic tests. For the rosacea, get checked for SIBO (Small Intestinal Bacterial Overgrowth) that could be causing gastrointestinal symptoms as well as causing skin issues.  Our skin is a reflection of our gastrointestinal health.     Following the Autoimmune Protocol Diet has been helpful in keeping my own rosecea, eczema, and dermatitis herpetiformis and other autoimmune diseases in check.   Be sure to be checked for nutritional deficiencies that occur easily in gluten free and dairy free diets. Keep us posted on your progress! References: Clustering of autoimmune diseases in patients with rosacea https://pubmed.ncbi.nlm.nih.gov/26830864/ And... Celiac disease and risk of microscopic colitis: A nationwide population-based matched cohort study https://pubmed.ncbi.nlm.nih.gov/36939488/
    • Bebee
      I am new here, I have been diagnosed with Microscopic Colitis (Lymphatic) years ago and have been gluten-free, DF since, but I still can have occasional bouts of diarrhea (still trying to figure that out).  I also have MS, Hypothyroid, Arthritis, Reynaud's and my rosacea has been acting up lately.  What treatment is suggested to help with rosacea?  I would like to know too if there is a test for celiac if you have been gluten-free?   Thank you, Barb    
    • bluebird2032
      Gluten free/ non dairy , low calorie pudding ideas please?
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