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Popular Content

Showing content with the highest reputation since 03/09/2025 in Posts

  1. Beverage

    Oats gluten free?

    I went through issues with oats when first diagnosed. I thought I couldn't eat any oats at all, even certified gluten-free. Then I learned about purity protocol oats. The list here has gotten smaller through the years, so I check it every time I order. I had been ordering one brand on the list that was later found to contain lower levels of gluten. I...
    3 points
  2. 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...
    3 points
  3. NavyMom
    Hi CathiJean, Wipe those tears my friend. Finding out that you have celiac just gave you the cheat code on how to start feeling better! It may feel like a loss right now, but honestly within 6 months you will start feeling better. Within a year you will look back and wonder how in the world did I survive feeling like that for what feels like a lifetime...
    3 points
  4. trents
    The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a...
    3 points
  5. 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...
    3 points
  6. 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...
    3 points
  7. trents
    Celiac disease does not damage the stomach. It damages the lining of the small bowel, the part of the intestines immediately below the stomach. Also called the duodenum. Do you know if biopsies were taken from this area to look for celiac disease?
    2 points
  8. knitty kitty
    I agree with @cristianacristiana, @Scott Adams, and @trents. You probably weren't eating sufficient gluten for the test to be accurate. Ten grams of gluten for at least two weeks before testing is needed for accurate blood tests. Three gram of gluten is enough to make you feel unwell. Ten grams of gluten is required for the antibodies to leave...
    2 points
  9. cristiana
    Hello @Paula Andrews I started to get a whole host of new pains around the time of my diagnosis and afterwards, quite apart from the expected gastric pain. Pelvic pain was caused by bloating from dairy products; pain in my chest due to bloating caused by iron supplements; costochondritis in my ribs, which was a dull diffuse pain not emanating from the...
    2 points
  10. trents
    From: https://en.wikipedia.org/wiki/Gluten "Gluten is a structural protein naturally found in certain cereal grains. The term gluten usually refers to the elastic network of a wheat grain's proteins, gliadin and glutenin primarily, that forms readily with the addition of water and often kneading in the case of bread dough. The types of grains that contain...
    2 points
  11. Beverage
    I didn't have the typical intestinal symptoms before I was diagnosed, but had severe allergies, asthma, and failing kidneys. I often felt that horrible body achey felling like when coming down with a super bad flu. Now if I get glutened, I feel like I've been hit by a truck.
    2 points
  12. trents
    Yes, lectins can be problematic for some people. IGG testing can be used to detect celiac disease but not IGE. IGE antibodies have to do with allergic reactions and ceilaic disease is not an allergy, it is an autoimmune reaction. The IGG tests are not as reliable for detecting celiac disease as are the IGA tests but they can be be very helpful, particularly...
    2 points
  13. Itsabit
    Thank you for clarifying! Something to possibly consider as I continue on my “non-gluten” quest and if I do not improve, but being new to this whole realm and already overwhelmed and stressed, this would have pushed me over the edge right now. 🥹
    2 points
  14. trents
    Thanks for the information, knitty kitty. It helps bring some clarity and reduces the confusion that misinformation such as is contained in this thread title introduces into the community. People new to the celiac experience are already struggling to wrap their minds around not being able to eat just wheat, barley and rye any longer. We don't need to unnecessarily...
    2 points
  15. trents

    Oats gluten free?

    Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new...
    2 points
  16. jeema
    @Cathijean90 It's pretty common to suffer from symptoms for a long time. I had symptoms for a decade before I was diagnosed and I think that is about average. The problem is the symptoms are often vague enough to be attributed to other digestive issues and that was the case with me. It was only after I found out I was anemic from routine bloodwork and...
    2 points
  17. James47
    Hiya..I was 48 when diagnosed two years ago and I was in right bad way but strict gluten-free diet you will recover I promise x
    2 points
  18. 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...
    2 points
  19. SoBannaz
    No I was 19 when I was diagnosed. And before then I brought my own lunch (usually a sandwich) which I would throw up an hour later. I wish we figured it out sooner. My folks thought I had an eating disorder and was purposely making myself sick. With the way things are going wouldn’t be surprised if people think a kid with celiac disease is just attention s...
    1 point
  20. trents

    TTG-IGA Question

    Welcome to the forum, @alannahP! Excellent question but I don't know that I have ever seen any TTG-IGA score be "0". But then again, I only see TTG-IGA scores of people who have celiac disease. It would be interesting to know if people who don't have celiac disease would necessarily have a "0" TTG-IGA score or if a very low TTG-IGA score is normal for...
    1 point
  21. Pinkdoglady
    Thank you everyone for your answers, they were all very helpful, and some very useful links. I am rethinking the value of having the biopsy as I’m not sure it will give any actual benefits.
    1 point
  22. 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 g...
    1 point
  23. Parkrunner
    I probably had celiac for 40 years, late 20s to late 60s, before being diagnosed. I was a runner and had mild intestinal symptoms most of the time. There was a couple of months in my late 40s where I had significant diarrhea every day for 6 weeks. Saw two PCPs about it and celiac wasn't on their radar. In my 30s, 40s, 50s, and 60s I had insomnia, hot...
    1 point
  24. CelluloseSick
    Thank you Scott. Thats very helpful.
    1 point
  25. cristiana
    Hi @CarolTN I haven't been diagnosed with seborrheic dermatitis but as @Scott Adams says, like a lot of coeliacs I do suffer from itchy skin, and now adult onset eczema. The latter started during one of the lockdowns. I find my skin is often itchy if the temperature changes from hot to cold or cold to hot, that seems to set it off. This time of...
    1 point
  26. trents
    Welcome to the forum, @CarolTN! Can you give us some background? Have you been officially diagnosed with either celiac disease or dermatitis herpetiformis or both?
    1 point
  27. Theresa2407
    those are spring roll wrappers and will not work for true egg rolls; they kept fall apart. But thank you for your reply.
    1 point
  28. CelluloseSick
    Thanks Scott. its been a tough journey. i haven’t been able to take any painkillers for pain, because they all contain some form of cellulose. I’m finally working with a compounding pharmacist to get compounded Ibuprofen w/o cellulose filler … I’ll let you know how that works out. when I tell doctors about my problems with cellulose and med...
    1 point
  29. Scott Adams
    Hi Stephanie, I’m so sorry you’ve been going through such a frightening and overwhelming time. A celiac diagnosis on top of gastroparesis and gastritis is a lot to process, and your feelings are completely valid. It’s wonderful that you have such a strong support system—leaning on them (and your faith) will make this journey easier. The gluten-free transit...
    1 point
  30. Scott Adams

    Decreasing tTiga?

    In Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac...
    1 point
  31. VioletM
    Hi Cristiana, we're italians, we eat pasta everyday so I guess consuming gluten won't be a problem. Thanks for the help Violet
    1 point
  32. cristiana
    Hi Sammy I was going out for a meeting when I wrote my last post, and wanted to add something to your second comment, but didn't want to rush the post in case it came out wrong. The push for a diagnosis tends to be because it is worth finding out for sure if one has coeliac disease or not if one has been experiencing gastric symptoms. Coeliacs...
    1 point
  33. Cathijean90
    @NavyMom Thank you so much for this message!! I needed this positivity! There’s already been a huge difference. After a year of no menstrual cycle, it has returned. I made a mistake and ate something with gluten, my rash on my hands came back, my neuropathy pain in my feet was really intensified. I have no idea how I went for so long just dealing with these t...
    1 point
  34. Toms

    Oats gluten free?

    Something to thing about:- Coeliac Australia supported a study into Oat Toxicity in Coeliacs and found that oats triggered an immune response in eight percent of the 73 people who participated in the study. The study was published in the November 2024, Journal of Autoimmunity.
    1 point
  35. Bebygirl01
    On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those...
    1 point
  36. knitty kitty
    @glucel, I encourage you to reconsider Benfotiamine. Talk to your doctor! There's many articles that have found a link between thiamine and heart problems. Here are some articles worth further discussion with your doctor: Pyruvate dehydrogenase activity and quantity decreases after coronary artery bypass grafting: a prospective observational...
    1 point
  37. Jsingh
    Hi, I am mother of a six year old who was organized a year ago when she was fine. to answer your question about removing gluten from your kitchen- it will be a mammoth task but your entire kitchen has to be free of gluten for her to be safe. Now I’ve learnt from this forum and others that different celiac patients show different level sensitivities t...
    1 point
  38. Liquid lunch
    Thanks, sorry for all the questions but in the above link.. ’Remember, nearly all tests and screening for celiac disease require the patient to be eating a gluten-containing diet before testing’ I guess this also applies to other lectins so you would need to be eating them in order to find out via igg/ige testing which ones you’re reacting to? I...
    1 point
  39. Levi

    Test results

    Search “deamidated gliadin Abs, IgG is 26.6/abnormal high” online for articles on your exact question above, and I’m sure this forum has an expert in explaining your test results as well.
    1 point
  40. trents
    Connie, spinach is high in oxalates. Many celiacs do not tolerate oxalates well. If you are still battling dermatitis herpetiformis, you may want to look into a low iodine diet as well as reviewing possible sources of gluten cross contamination.
    1 point
  41. trents
    The elevated TTG-IGG could be caused by celiac disease but it can be elevated for other reasons as well. The centerpiece of celiac blood antibody testing is the TTG-IGA and apparently that was not elevated. When you had the blood draw done for the testing, had you already been cutting back on gluten?
    1 point
  42. Beverage
    Also, Vera Salt and Ava Jane's taste SO MUCH BETTER. Not sharp, and i need to use a lot less.
    1 point
  43. Beverage
    I've recently researched a lot about salt lately. Celtics sea salts have minerals, which have been tested to include aluminum, cadmium, iron, lead, and microplastics. I used to use Redmond salt, but it tests as having aluminum, iron, and lead. I finally settled on 2 clean salts: Vera Salt, which you can only order from their web site. Also Ava Jane's which...
    1 point
  44. Beverage
    I had horrible reaction to lisinopril, a severe cough that kept me up all night. The cough is apparently common. I did better with irbesartan, no cough, and it controlled my BP better too.
    1 point
  45. Itsabit

    SkinSafe

    Hi. Yes. I’m awaiting my Biopsy results. I had B12 and other labs drawn on Mon, including Thyroid levels, as I am on Levothyroxine for radiation-induced hypothyroidism. Those levels should indicate any iodine issues. We had discussed the urine iodine, but he went with the thyroid instead. We’ll see. I never had any of those Pellagra skin changes, or...
    1 point
  46. knitty kitty

    SkinSafe

    @Itsabit, Ask your doctor for an erythrocyte transkelatose test to measure thiamine. It's a better measure of thiamine deficiency than a serum test.
    1 point
  47. Jacki Espo

    SkinSafe

    I should add that I had a flare up I think was from cross contamination and during that time I ate gluten free chips and immediately had severe itching at the breakout site. I suspected it was the iodine in the salt from the chips that did it. It seems like iodine may impact a flare up but does not impact me if I’m otherwise not experiencing the rash. G...
    1 point
  48. LookingForAnswers101
    I can't tell yet because it's only been a few days and the issue occurs every 2/3 months!
    1 point
  49. Bebygirl01
    Ortiz-Sánchez JP, Cabrera-Chávez F, de la Barca AM. Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients. Nutrients. 2013 Oct 21;5(10):4174-83. doi: 10.3390/nu5104174. PMID: 24152750; PMCID: PMC3820067. AND SEE: Oats Intolerance in Celiac Disease. PLoS Med. 2004 Oct;1(1):e23. doi: 10.1371/journal.p...
    1 point
  50. cristiana
    Hi Marie Welcome to the forum. I am so sorry your daughter is pointing the finger at you like this. I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them. Sometimes people just need a safe place to vent, and unfortunately...
    1 point
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    • cristiana
      A pleasure.   It could just be the oats (even pure ones can cause problems for some coeliacs, as I mentioned) but don't be discouraged if that is the issue, as for most of us that passes.  Very odd, really, as before going on a gluten free diet, they had no effect on  me at all!    
    • Ann13
      My POINT trents, was actually related to food more than inhalers causing your issue. My POINT is that even though gluten free food is supposed to not cause a reaction it does and can in some people so think about what you're eating...premade foods labeled gluten free like breads, pastry, cookies....whatever you're consuming....may be causing the reaction. I can't eat any gluten free breads from stores & certain pasta is a no too...others are OK. You may want to eliminate certain foods and see if your problem clears up.  2. Check with the inhaler manufacturer to ensure it's gluten free. Other than those two points if it continues a throat scope by an ENT may be needed to rule out other things. 
    • Farralley
      Thanks Christina.  The Granola products I tried were marked Gluten Free so supposed to be suitable.  I've had many tests done but no results yet but I get the results in next day or so.   I may well have these issues due to deficiencies. Just wanted to get some anecdotal feedback about the issue before I see the GE specialist   If and wwhenI get an answer, I'll post it her. Cheers!! Carmel  
    • cristiana
      Hi @Farralley and welcome to the form I have had soreness, ulcers and also find my tongue and inside my mouth is very sensitive and blisters easily (blood blisters) if I bite something sharp.  Ulcers were a big issue twice before I was diagnosed, the doctors didn't put two and two together and think of coeliac disease, but I had two episodes where I had so many, even eating toast and marmalade made me think I was chewing glass. In your case, what you are describing could well be due to a reaction to cross contamination, or perhaps even a sensitivity to oats?  Are you consuming gluten free oats - i.e. certified pure oats, free from contamination?  You will probably know that coeliacs cannot eat standard oats, they have to be oats that are grown and processed separately from gluten containing grains, and certified as such.  But even then, a small percentage of coeliacs cannot tolerate pure oats, in the short term while they are recovering, or even in the longer term, unfortunately.  It took me eight years before I stopped reacting to even pure oats and now eat them with no issues, but for some a reaction to the protein avenin in oats can be either a temporary or long term issue. Another issue is you may be short of iron or B12 and other B vitamins, which can leave your mouth sore and prone to ulcers.  Have you had these levels tested recently?  If the burning continues, I'd definitely ask your doctors to do another blood test. Lastly - you may have burning mouth syndrome, do have a look into that, which could just be a temporary reaction to something - food, a new toothpaste, reflux? For now, in your shoes I'd probably keep an eye on any recurrences and perhaps keep a food diary to see if there is a pattern.  Have the blood test to check for deficiencies, and try to eat soft, bland food for a few days to help recovery along. Hope this helps, Cristiana  
    • Farralley
      Hi all I was diagnosed wuth Coeliac Disease about 9 months ago after my GP was investigating chronic anaemia. I had an endoscopy and 'total atrophy of the villa' was observed. I have recently had test to check fir other nutrient deficiencies. The test resilts will be shared with me soon during a visit to the Gastro Entrologist.  My concern is a sore mouth lining. I'm not certain but thought that consumption of a gluten free Granola which contained freeze dried berries seems to coincide with the soreness.. it's taken weeks and a range of over-the-counter remedied to reduce the soreness.  I've also been casting around for a remedy and a genuine cause. Perhaps foolishly I  purchased another similar product ( no frozen berries) and my mouth has become a lot sorer almost immediately.  No doubt my doctor will have some ideas. Just wondering if  1. Others had mouth soreness 2. Others had difficulty with gluten-free Granola-like cereal. TThans in advance. Farralley     . 
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