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Popular Content

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

  1. IrishHeart

    Newbie Info 101

    Klugett and 38 others reacted to IrishHeart for a topic

    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
    More information about "Scott Adams' Story of His Diagnosis of Celiac Disease"
    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
    More information about "Forbidden Gluten Food List (Unsafe Ingredients)"
    If you have celiac disease or gluten sensitivity, it’s crucial to know which ingredients are unsafe and forbidden. This master list of ingredients that contain gluten, or may contain gluten depending on processing, is kept up to date f...
    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...
    10 points
  6. Scott Adams
    More information about "What Are the Symptoms of Celiac Disease?"
    Celiac.com 09/19/2025 – Celiac disease is a chronic autoimmune condition triggered by eating gluten. It can cause a wide range of symptoms, from digestive problems to skin, bone, and neurological issues. Some people experience many symptoms o...
    10 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
    More information about "Gluten-Free Alcoholic Beverages"
    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
    More information about "A Journey Through the Nexvax2 "Celiac Disease Vaccine" Clinical Trial"
    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. Scott Adams
    More information about "The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free"
    Celiac.com 10/29/2025 – Welcome to your ultimate beginner’s guide to celiac disease and gluten-free living. Whether you’re newly diagnosed or just exploring the gluten-free lifestyle, this guide will help you get started with confidence. ...
    6 points
  12. Jefferson Adams
    More information about "Ten Things to Try if You Accidentally Eat Gluten"
    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
  13. Scott Adams
    More information about "Nutrient Deficiencies and Celiac Disease: Understanding the Connection"
    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
  14. Mary Anderies
    More information about "Celiac Disease Treatment and Continuing Symptoms"
    Celiac.com 04/07/2021 - It is not uncommon for people with celiac disease to have ongoing digestive symptoms and other systemic problems, even on a gluten free diet. Even though celiac disease is becoming better understood each year, much...
    6 points
  15. 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
  16. 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
  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. Scott Adams
    More information about "Safe Gluten-Free Food List (Safe Ingredients)"
    Shopping and label-reading with celiac disease is easier with a reliable safe list. This curated, regularly updated guide highlights foods and ingredients that are naturally gluten-free or typically gluten-free when used in foods, beverages...
    5 points
  20. trents
    Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of the general population carries one or both of these genes. However, only about 1% of the general population ever develops...
    5 points
  21. Jefferson Adams
    More information about "Psychiatric and Neurological Manifestations of Celiac Disease in Adults"
    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
  22. 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
  23. 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
  24. 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
  25. Wheatwacked

    Worried

    Scott Adams and 4 others reacted to Wheatwacked for a topic

    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
  26. 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
  27. 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
  28. 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
  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. 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
  31. Scott Adams

    7yo struggling!

    wellthatsfun and 3 others reacted to Scott Adams for a topic

    It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out"...
    4 points
  32. trents
    Key word, "gluten-like". By the way, have you looked up Dr. Osborne's credentials and his background? He is a licensed nutritionist but his scientific? medical? clinical background is that of a chiropractor. He is not taken seriously by many experts in the medical and scientific community. If it is helpful to you to see these other cereal grain...
    4 points
  33. Jefferson Adams
    More information about "Which Fast Food French Fries are Gluten-Free?"
    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
  34. 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
  35. Awol cast iron stomach
    Sorry to read you are struggling. Many of us have been there. You are not alone. It is frustrating, and isolating. It was really difficult to lose long time friends, or no longer be able to eat out. The hardest was when my family of origin refused to come to a gluten-free BBQ I was hosting, if I would not let them bring gluten to it. You read that...
    4 points
  36. Allise
    Hello, I recently got diagnosed with Celiac Disease around a month and half ago. I have been dealing with symptoms for two years (little did I know). When I was around 13, I started to gain a lot of weight out of nowhere, my hair started thinning and falling out, I developed a rash on my arms (Keratosis Pilarious), became very depressed and anxious constantly...
    4 points
  37. Scott Adams
    Oh, and you really don’t want to reach the villi damage stage if you can avoid it!
    4 points
  38. TinafromArkansas
    Absolutely not will I be taking a unvetted vaccine that has the potential for lifelong illness and/or death for a common virus with a 99.9% life expectancy.
    4 points
  39. 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
  40. GFinDC
    My understanding is DH is caused by IgA deposits in the skin, not by lack of niacin in the diet. If you have some info that contradicts that I'd be glad to look at it. By info I mean a study showing niacin deficiency causes IgA deposits under the skin and DH blisters. Otherwise I consider your claim that pellagra causes DH to be erroneous.
    4 points
  41. Kistim

    1 Month Post Diagnosis Help

    Svelte and 3 others reacted to Kistim for a topic

    I’m 7 years out since diagnosis but I can tell you with certainty that I felt worse the first 9 months after diagnosis and going strict gluten free. Your body is detoxing in so many ways. Stay super strict and stick it out....you will be amazed at how well you will feel when you really begin to heal from the years of damage. Nourish your body with clean, ...
    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. kareng

    Cross Reactivity Confusion

    notme and 3 others reacted to kareng for a topic

    There is no science to this nonsense that our body sees coffee as gluten and reacts with an antibody response. The company that first started this nonsense to sell “lab tests” actually admitted that they tested people using some instant coffee that was found to contain gluten. But people love a good conspiracy theory and to pretend to be experts on the...
    4 points
  44. Ennis-TX
    Ditto many of the above, but wanted to say, I had many of my food intolerance issues just crop up after going gluten free. I also had several of my food allergies come up after getting glutened...oddly the allergies conside with something I was eating when I got glutened. Just a observation but seems when then immune system goes on the attack with gluten...
    4 points
  45. kareng
    Obviously, you have a lot more issues with him than just this. I feel bad for the kids as an early diagnosis could be so helpful to their current and future health. If it were me, I would get another doctor and get the ones with the obvious issues tested. It would be nice if he agreed, but if I think it's for my kids health and future success in life...
    4 points
  46. Feeneyja

    Gluten Free Coffee

    squirmingitch and 3 others reacted to Feeneyja for a topic

    Geesh! I am not trying to diagnos. I was just adding to the information. I know that some of the folks here posting on this thread have neurological symptoms. My only point is that this CAN be an issue and that small amounts of cc are a problem particularly in those who have neurological symptoms.
    4 points
  47. egs1707
    Celiac is the only problem that's single handedly destroying my life right now so would respectfully disagree with you there, sorry. Was actually reasonably looking forward to 2016 at the time before all this started, never saw it coming that's for sure. Sure, I can safely say that's been the aim of everyone on this thread. Nope, they're just...
    4 points
  48. across

    Internal Tremors

    HoneyD and 3 others reacted to across for a topic

    Thank you, thank you, thank you for asking about this! I have these, too, and they are very distressing! Magnesium and sublingual B-12 seem to help with this for me. I also tested low in vitamin D, and it's possible that my supplementation with that has helped, as well. Just my experience...hope you find something in it helpful.
    4 points
  49. NotMollyRingwald

    Dear Future Amy

    IrishHeart and 3 others reacted to NotMollyRingwald for a blog entry

    Dear Future Amy, I know you are doubting your intolerance/sensitivity to gluten. I'm sure, now that time has gone on, you're starting to doubt the trouble it has caused you. You have forgotten how very miserable your gluten challenge was, and have started allowing the if's and the but's and the maybe's into your mind. So, I'm writing to you now, to remind...
    4 points
  50. MitziG
    "Oh honey, you don't want Celiac Disease. You can't have bread!" Oh, well then I guess I don't have it. Never mind this biopsy report....Duh.
    4 points

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    • Jmartes71
      Curious question

      By Jmartes71 · Posted

      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      Question

      By Amy Barnett · Posted

      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      Alarming

      By Jmartes71 · Posted

      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
    • xxnonamexx
      Gut nutrition supplements?

      By xxnonamexx · Posted

      Thanks for the info. I have been taking the ones you recommended but when I saw this I was curious if it was something else to add to the journey Thank  
    • Jane07
      Gluten free Yogurt suggest

      By Jane07 · Posted

      I used to be able to get the Rivera yougut i havent been able to get it lately. I like getting it did say it did say gluten free. I just looking for a good yogurt that gluten free that i can add some fruit and nuts to any suggestion would be helpful  thanks
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