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Popular Content

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

  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. 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
  3. 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
  4. 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
  5. Scott Adams
    For those just starting out, please see this article: And this post, which is rather old, but mostly still useful:
    7 points
  6. 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
  7. 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
  8. 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
  9. 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
  10. 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
  11. 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
  12. 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
  13. 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
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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
  19. Scott Adams

    7yo struggling!

    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
  20. knitty kitty
    Lectins are carbohydrate storage proteins. Different plants have different lectins. Gluten is a lectin, but not all lectins are gluten. Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it. During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes. In...
    4 points
  21. 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
  22. RachelC.
    I was diagnosed with Celiac 4 years ago and went completely gluten free but still had issues with nausea, diarrhea and occasional sharp abdominal pain. Just by chance my sister told me she had tested positive for fructose malabsorption because she was having similar issues. I decided to test and was also positive. I had never heard of it, but once adjusting...
    4 points
  23. heathers430
    Hi—sorry you are miserable. I am newly diagnosed as well. I can tell you that I have multiple food intolerances on top of celiac. What you are describing reminds me of when I add something to my diet that is an intolerance. I wonder if something you are eating to replace gluten foods is making you sick? For example I found out I can’t tolerate almonds. Th...
    4 points
  24. Stephanie Bach
    THREE BAKERS is equal or better than Canyon Bakehouse or Udi's and slightly cheaper by approximately .50 or more. I used to buy at least 8 loaves/mo. of the 7 Grains when available. Unfortunately, their breads are also small. That's too bad. I have started to wean my family off breads because I cannot afford the high prices, especially with today's food prices...
    4 points
  25. 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
  26. gfgypsyqueen
    Anyone else have varying levels of gluten reactions? I know when I've been seriously glutened. I practically pass out, vomit, diarrhea, etc. When I touch gluten, my hands break open and bleed. But sometimes I just have a nasty temper, which is not like me, with no other signs of gluten. Everything and everyone makes me really mad. Little issues really make...
    4 points
  27. 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
  28. trents
    "Just like "friends" taunt recovering alcoholics, your friends will taunt you and test you with gluten." Unfortunately, this can be true.
    4 points
  29. 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
  30. trents
    https://ods.od.nih.gov/factsheets/Niacin-HealthProfessional/#:~:text=High doses of nicotinic acid,12%2C28%2C36]. "High doses of nicotinic acid taken over months or years can also be hepatotoxic; effects can include increased levels of liver enzymes; hepatic dysfunction resulting in fatigue, nausea, and anorexia; hepatitis; and acute liver failure [...
    4 points
  31. cali5960
    Hello! my daughter was diagnosed 7 years ago when she was only 8 years old and she is very sensitive to gluten. You may not know this but it takes time for the intestines to heal which for us was around a year and a half. We also had to change any thing that came into contact with her skin or in the air (like hairspray, deodorant and even candles). We...
    4 points
  32. 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
  33. Ruu
    I just want to update for anyone who is interested: My gastro said that with elevated ttg-igg, presence of genetic factors for celiac, and current symptoms make him 95% confident I have celiac disease. I am scheduled for an endoscopy where he is going to take ~16 samples and observe the damage. I feel I am in good hands with someone as thorough as he...
    4 points
  34. Mama C
    I just called the number on the bottles of shampoo and conditioner. They said that one ingredient was changed but they are both still gluten free. Yay!
    4 points
  35. 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
  36. Lucille Cholerton
    After going gluten free, my headaches disappeared immediately, my sinusitis and drippy nose cleared up within 2 weeks, my constipation cleared up within a month, my severe rheumatoid arthritis cleared up totally in 5 months. I have now been gluten free for over 30 years!
    4 points
  37. 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
  38. 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
  39. 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
  40. Tin Man
    I was diagnosed with Celiac Disease at age 64. I realize in retrospect that I had misdiagnosed DH my entire life, but it got much worse in later life, and I finally saw a dermatologist who recognized it. I went on a strict gluten-free diet, but the DH persisted for two years nonetheless. I stuck it out with rather ineffectual steroid creams , and refused...
    4 points
  41. Patty harrigan
    I just don’t eat food that either my husband or I have prepared. People think I’m crazy but I’m the one who pays the price. Nothing is worth getting glutened....nothing. I travel with my own cooking equipment down to a sponge. I don’t eat out unless the restaurant has a separate prep kitchen. I’m 10 yrs into this and every time I get glutened my reaction ...
    4 points
  42. cyclinglady
    My house is gluten free. I do not allow any gluten inside — ever. I do allow it when we are having a party outside and I set up an extra table to hold those foods to prevent cross contamination. When that type of party occurs, I toss or send home ALL the food with non-celiacs. When I invite people over and they ask what they can bring, I u...
    4 points
  43. bartfull
    Hmm...my affairs in order. OK. Alan on Sunday, Bob on Monday, Steve on Tuesday...Oh, not those affairs. OK, now that I've softened things with a lame joke, the doctor really did say that. Turns out I have terminal cancer. Lymph. "Very advanced". They say they can't cure me but they might (MIGHT) be able to prolong my life. No thanks. There's a reason...
    4 points
  44. kareng

    Cross Reactivity Confusion

    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
  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. egs1707
    Thanks, me too, with enough information I'm hoping to piece the puzzle together in a way doctors seem unwilling to put the effort into doing (something that really has surprised me during this process) Definitely got it unfortunately, blood test, two gluten challenges and biopsy doesn't leave much doubt Couldn't put it better myself! Won...
    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. notme

    Overwhelmed and unable to accept

    duuuuuuuude. you are speaking to a forum of celiacs. we *alllll* face these difficulties. are you saying my life sucks? i went undiagnosed for TWENTY FIVE YEARS. i am 6 years into the gluten-free lifestyle and have not developed any other major difficulties. in fact, all those terrible things (symptoms, tons of them) went away. you won't see...
    4 points
  49. bartfull

    dependent edemas

    Keep pursuing this. It's not normal and you need to get to the bottom of it ASAP. We kept goofing around with antibiotics (at my own insistence.) until it was too late. I'm not trying to scare you. It might very well be a bad infection, but mine turned out to be cancer.
    4 points
  50. 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
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    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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