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. trents

    trents

    Moderators


    • Points

      14

    • Posts

      8,139


  2. Scott Adams

    Scott Adams

    Admin


    • Points

      9

    • Posts

      27,432


  3. cristiana

    cristiana

    Moderators


    • Points

      6

    • Posts

      1,871


  4. Kathleen Mostek

    Kathleen Mostek

    Members


    • Points

      5

    • Posts

      5


Popular Content

Showing content with the highest reputation since 03/28/2025 in all areas

  1. Russ H
    I developed a heart arrhythmia and on several occasions had to wear a 24 hour Holter monitor. Among other things, I had premature atrial complexes (PACs) and occasional AFib. I was very fit at the time, running and cycling. This completely disappeared following my diagnosis and following a strict gluten free diet. I haven't had a single episode since, in...
    2 points
  2. trents
    We all would but that one is a pipe dream. There just isn't enough demand from a business standpoint to justify a whole fast food chain converting operations to comply with GFCO standards.
    2 points
  3. Tuba1971
    I had been glutened from somewhere since I pretty much make all my food from scratch. I had to have an endoscopy which should gluten damage, had blood work which also indicated high gluten. 4 years ago when I had these tests my gluten levels were all in good alignment. It comes down to my levothyroxin accord brand that must have gluten in it. I switched to...
    2 points
  4. Kathleen Mostek
    I had to stop many medications due to being glutened. I slowly took one medication at a time and did a “drug holiday” of at least a week. If I was not sure, I waited a few weeks and tried again. Interestingly, some medications that I was on for decades, were outsourced to a specific company in India. Some meds had 15 or more additives! It took hours of res...
    2 points
  5. cam6
    A tip I have learned when placing an order using the app is to use this name on my bowl instead of my actual name: Gluten Allergy
    2 points
  6. cristiana
    I went to France about five years after my diagnosis and at that time found I was reacting a lot to food that made no mention of gluten in the ingredients, and my antibodies were raised after my visit as I had my annual review just after the trip. I felt that food labelling wasn't as reliable as the UK, and cross contamination a more marked problem...
    2 points
  7. RMJ
    If there were stains or particles on a drink can in an area that would either contact the drink or my lips, I would wash that can whether or not I had celiac disease.
    1 point
  8. 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
  9. Kathleen Mostek
    Gluten free peppermint Tums!
    1 point
  10. larc
    Thanks for your thoughts on this. My reactions to gluten are complex and involve more than just my heart and arteries. The problems with what It does to my cardiovascular system do present me with a bit of a conundrum at times. For instance, I had cardio bypass surgery in 2002 (at age 53) and then again had angina and artery issues in 2006. At the same time...
    1 point
  11. DebD5
    Wow! I’m so grateful to read this and I’ll try it. I’m a celiac since 1996. I’ve been so horribly sick this last year and doctors can’t figure it out. Constant muscle aches, basically all the symptoms you posted. Plus I can’t eat night shades and majority of lectins. It’s unbearable. Have an appointment with a GI celiac specialist but not until the end of Ma...
    1 point
  12. FayeBr
    Hi. It has been a while since I have been Glutened but I have had reactions to soy in the last year. But yesterday I ate 3 crisps that stated it contained just dehydrated sweet potatoes. They are not certified gluten free but I thought they would be safe. Immediately I felt like they were stuck in my throat and I had acid reflux with indigestion. I had breathing...
    1 point
  13. trents
    Welcome to this online community, @Mina H! 1. Apart from any consideration of crypt hyperplasia, villous atrophy is the hallmark of celiac disease. There are some other things that can cause villous atrophy such as an intolerance to cow's milk protein (CMP), chronic NSAID use, a certain blood pressure med, certain parasitic intestinal infections and...
    1 point
  14. Terrance Donald
    Hello Everyone, Quite helpful info. I was looking for same kind of info which finally i found here.
    1 point
  15. Scott Adams
    I think both systems have merits and faults, but in my opinion no citizen of any country should be denied health care, and it should be a basic human right, no matter your income.
    1 point
  16. trents
    Don't we wish there were!
    1 point
  17. Scott Adams
    It’s frustrating how little awareness there is around celiac complications, even among doctors. Your discovery about histamine intolerance makes so much sense. It’s interesting how interconnected these reactions can be (heart arrhythmias from food? No one warns you about that). It’s great that antihistamines helped, and the ranitidine connection is a ...
    1 point
  18. dixonpete
    Another concern I had with my cockup with the bandage was with the larvae sitting in the gauze potentially drying out and dying while I futzed around. Seems things are ok. I've been having tingles under the stretch bandage I used to secure placement. I'll know for sure in a couple of days when I see the entry wounds.
    1 point
  19. trents
    Welcome to the forum, @CiCi1021! Well, to begin with, most of us have found it isn't necessary to buy a lot of specifically labeled "gluten free" or "Certified Gluten Free" prepackaged food items as long as you are willing and able to cook from scratch. This is especially true since testing by celiac watchdog groups has cast some serious doubt on how...
    1 point
  20. knitty kitty

    Inhaler problem

    Hello, The medication in these inhalers can cause a thiamine deficiency if used by someone already low in thiamine. We don't absorb sufficient amounts of vitamins and minerals due to the inflammation and damage done to our villi in Celiac Disease. Even a long term strict gluten free diet may not provide sufficient amounts of vitamins and minerals...
    1 point
  21. CJF
    We are on a tour with Road Scholar so will be limited as to how much grocery shopping we can do. They know I have to be gluten-free and from what I've read most European countries are much more aware and trained in gluten-free.
    1 point
  22. SBT4
    Would love to see some of these fast food places be certified gluten free. I have a teenaged grandson with celiac and it’s so hard to be a teen and not able to go where your friends go.
    1 point
  23. Iris Kraft

    Inhaler problem

    I have alerted surgeons that they need to check with manufacturers and labs to vet the anesthesia. My hands surgeon did that and I was ok so reconstruction surgeon called her to use same anesthesia. They certainly wouldn't have taken just my word.
    1 point
  24. Dawn Meyers
    I was the one that was asking about vaccines. I was also the one with my antibodies over 500's that continues to go up. Just told to take out all gluten-free processes foods out of my diet because they can still contain gluten. ( 20 parts per million) Have been put on folate, vitamin D and B12 . Hope this helps. Thanks for the article on gluten-free food...
    1 point
  25. fritz2

    Question

    I just felt more poorly all of the time. I did notice that on Sundays when we usually had pancakes for breakfast I felt worse but my mom blamed the eggs and milk so we switched to soy and quit using eggs. (this was over 60 years ago). The symptoms changed some, but I still didn't feel very good and the constipation diarrhea cycle didn't change much either...
    1 point
  26. markpadgett8245
    It does seem the customer here was looking for a fight. Best to state your needs at the beginning when dining out--be it a person with Celiac or with gluten sensitivity. I have never seen or heard of someone with Celiac who can drink regular beer. All that being said, a little civility goes a long way but if you are going to claim you are allergic to gluten...
    1 point
  27. Laney Covington
    Celiac.com 04/04/2025 - Universal Orlando Resort is a dream destination for many, offering thrilling rides, iconic attractions, and unforgettable experiences. But for those with celiac disease, enjoying a day at the parks requires extra...
    1 point
  28. 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
  29. fritz2

    Question

    My first post includes the blood test report done by the second doctor. They told me to take two Naproxen tablets per day. Absolutely worthless but I'm doing it. I get to visit the doctor again in two weeks. These doctors are worthless. I had to clue them in to the fact that they used to treat me for fibromyalgia 15 years ago with vicodin until some...
    1 point
  30. 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
  31. PixieDixie

    New Here…

    Yeah, hard for me to not eat salmon though it does cause varying degrees of irritation to the rash. Alright, guess I’m gonna have to be careful with iodine. Thanks for the article.
    1 point
  32. 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
  33. Kathleen Mostek
    Scott, I used the AI app Perplexity. I did use your recommendation for research as well, however one med was not the color or shape, after being outsourced to India. I called Blue Cross, spoke to a pharmacist, he also did not have the correct description of the drug from India! 37 additives!
    1 point
  34. CelluloseSick
    Thank you Scott. Thats very helpful.
    1 point
  35. Kathleen Mostek
    I just moved from Bay City. With gastritis, I found that conventional meds (Pepcid, pro tonic, sucrafate) made it worse. Peppermint tums (gluten free) saved me. There are additives in all meds. “Off the Wheaten path”, in Midland, is a drive for you….great sweets. Baynes in Freeland carries some “Third Coast” items, delicious! I also order from them, they are...
    1 point
  36. 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
  37. Theresa2407
    Yes mostly found on RX pill capsules and store bought shredded cheese are the worst for me.
    1 point
  38. cristiana
    Interesting idea @cam6!
    1 point
  39. trents
    @cam6, the problem I see with that is if multiple people call in an order around the same time using the name, "Gluten Allergy". You might get someone else's order.
    1 point
  40. Mollie Hart
    Thank you Scott! This is very helpful
    1 point
  41. trents
    Recent research has shown that erythritol and xylitol likely increase the risk of cardiovascular events, due to causing platelet clumping, for higher risk people. This effect occurred when these sugar substitutes were used in concentrations commonly found in home made and commercially produced food products and may be a problem with other sugar alcohols as...
    1 point
  42. chrish42
    A ray of sunshine and we can only hope! 🙂
    1 point
  43. Scott Adams
    It’s great that you’re being so cautious about gluten exposure, especially since you’re asymptomatic and rely on diligence to stay safe. Regarding your mom’s gluten-free dough preparation, there is a risk of cross-contact if gluten-containing flour was used in the same area, even if surfaces and hands were washed. Airborne gluten flour can settle on unco...
    1 point
  44. Liquid lunch
    I wonder if refractory celiac is just people reacting to other lectins they’ve not yet identified. If I was rich I’d spend all the money on igg tests and give them out freely to people when they sign up to this site, I’d never heard anything about other lectins until kitty pointed them out, probably lots of people in the same boat as me. My theor...
    1 point
  45. RobinGroenevelt
    I live in France and recently assisted a colloquium on Celiac and there were two French experts (doctors) there. They said that with a good diet the risk of increased cancer is pretty much no different than non-celiac people, which was a big relief for me to hear. They were more concerned about bones and said that even that can be “normal” with a good die...
    1 point
  46. trents
    Welcome to the forum, @Jo Woodard! The problem with oats is not always cross contamination with gluten from other grains. The main protein found in oats is "avenin" and it has a structure similar to the wheat/barley/rye protein "gluten". It is similar enough to cause a gluten-like reaction in some celiacs. About 10% of celiacs cannot tolerate oats.
    1 point
  47. Celiac16
    @Manaan2 hi Manaan, this is going to sound very random but vitamin b1, thiamine, helped me with constipation. It can also cause anemia if low (so can other b vitamins so a b complex or multivitamin could help, probably a good safety net too). My pediatrician had me take a multivitamin when I was diagnosed as a kid too just to cover all the bases.
    1 point
  48. lmemsm
    I've been trying various gluten free flour blend recipes. I'm not happy with the taste of any of them. Does anyone have tips on how to create your own gluten free flour blend recipes? Any good books covering the subject? I have an intolerance to xanthan gum, but I can use alternatives like flax, chia, psyllium husk and gelatin. I bought at least a dozen...
    1 point
  49. 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...
    1 point
  50. Beverage
    I looked back at my records working with my previous naturopath (the one who diagnosed me with Celiacs and I had all kinds of vitamin deficiencies), and see that I did have a B1 deficiency. My notes say that the B1 greatly improved my energy, no notes about asthma. I'm not sure why I am no longer taking separate B1 or a Multi B supplement, I guess I ran...
    1 point
  • Popular Contributors

    Scott Adams
    trents
    Terrance Donald
    Liquid lunch

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,173
    • Most Online (within 30 mins)
      7,748

    Jodi Browning
    Newest Member
    Jodi Browning
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      71.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • DebJ14
      I had the exact opposite thing happen.  Prior to my diagnosis and introduction of the gluten-free diet, I was sick all the time.  My file at the ENT was so thick because it was one upper respiratory infection, one sinus infection, one ear infection after another.  Year after year after year.  I have only been sick once in 18 years and I know exactly who gave me the infection back in 2012.  It was a coronavirus cold.  I was sick for 6 weeks and lost my sense of smell and taste for over 2 years.  I had every test in the book and took boatloads of prescriptions to try to get it back.  It was not until my chiropractor suggested I take zinc that my senses started coming back.  I have been exposed to lab confirmed flu, norovirus, covid and a host of other illnesses over the past 13 years and have not caught anything,  Not even a sniffle.  My GI doctor said that once I stopped poisoning my system with gluten that my immune system was able to fight off all these other infections.  I also had extensive tests for nutritional deficiencies (every 6 months for 5 years) and took large doses of targeted supplements until my levels finally came back to normal, or it was determined that I have a genetic mutation, making me a lifetime consumer of high dose Vitamin D, B 12 and multiple antioxidants.  Amazing that now at 72 I am healthier than I was in my all through early adulthood.  I was 54 when finally diagnosed with Celiac Disease, and it has been pretty much smooth sailing ever since, but I am a fanatic about my gluten-free diet because the alternative is not pretty.
    • jamiet06
      Hello, I hope I am posting this in the correct space, so apologies if not! After my last two endoscopies (2019 and 2024), I received the following comment in my report: Duodenal biopsy: Duodenal mucosa with mild intra-epithelial lymphocytosis in the presence of normal villous architecture. Comment: Findings are non-specific. They can be seen in coeliac disease, peptic or medication induced injury and H.pylori infection among others. Correlation with clinical findings and results of serological studies is recommended. I didn't have an ulcer and crohns disease was not mentioned to me. For the past few years I have had on and off digestive issues (gas, mild diarrhea, lower abdominal bloating). Just recently I went to my GP and he stated it was probably all related to IBS, however, I forgot to mention this statement from my endoscopy report. Does this sound like it is pointing towards celiacs? I am a 52 year old male. Any advice would be awesome. Thank you
    • cococo
      My kids take Whole Earth & Sea Kid’s Multivitamin as per our naturopath’s recommendation. They’re chewable but can be crushed and added to juice or food. No gums or citric acid. GMO free and gluten free too.
    • Murilo P
      It has been a while and I would like to post an update. The hallucinations are completely gone. Thanks to one bottle of B1 as benfotiamine and one of B3 as niacin, both taken together. I will buy more. The other symptoms are still being treated. Now I can already affirm that the symptoms are part of Borderline Personality Disorder. Yet I do have hopes that we will achieve the remission of BPD symptoms over the next couple of years. I think her issues come from this chain of events: Nutritional deficiencies at birth, due to being twin and having low birth weight. Low levels of Omega-3 during pregnancy and first years resulting in weak HPA axis development (predisposition for BPD). Consumption of gluten before age of 2 leading to predisposition for gluten sensitivity as adult Excessive consumption of gluten and sugar as an adult, leading to dysregulation of microbiome. Two severe gut infections due to lack of healthy bacteria, followed by hospitalization and use of antibiotics Poor diet after using antibiotics, worsening even more the gut health and leading to anorexia nervosa. Worsening of gluten sensitivity, then resulting in bouts of anxiety and depression, especially if added with sugar. Different forms of therapy haven't shown effectiveness yet, but I think it's because the issues must be treated with nutrients first, so we are taking that more seriously now and focusing on nutrients that are especially easy to digest and absorb. She still has intense gluten sensitivity, but I have hopes that this can go away after the body is completely re-nourished with the missing nutrients and then gets a few years to recover. Notes: The hallucinations begun after we tried Ayahuasca low dosage. I guess it was the result of a bad combination: "DR1 genes + B1 deficiency + Ayahuasca". I'd guess that would not have happened if it wasn't for the vitamin deficiencies. She has been fully in non-gluten diet, except for accidents that happen sometimes due to her food compulsion. I have been giving more importance to Omega-3, which is very effective in emotional regulation for BPD. Recently bought special products from Omnilife which use special "micelles" to promote quick absorption close to 100% rate. - "Micelles are tiny, spherical particles formed when amphiphilic molecules, like those in soap, aggregate in a liquid, typically water." Currently buying special whey protein which is hydrolyzed (easy to digest). I think we have underestimated the importance of proteins, which is not usually refereed as part of mental health treatment. She is pregnant again, but doing well. 🙂 Thanks for all of the help!
    • Jsingh
      Hi, My six year old has been complaining of tingling in the legs off late. This used to be pretty common thing with her pre-diagnosis and a couple of weeks after the diagnosis as well. And now it is back again. I am not sure if it's a glutening symptom, or she could be deficient in something. I got her Pure Encapsulations' multivitamin capsule, which she is ok taking, but she began reacting to cellulose in the capsule. I don't know if I can just break the capsule and she could drink it in a smoothie. I haven't tried that yet, so do not know whether it'll be palatable to her.  If any of you know of a CGF multivitamin that do not contain any gums and are preferably free of citric acid, I'd greatly appreciate. Thank you.   
×
×
  • Create New...