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  1. Scott Adams

    Scott Adams

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  2. trents

    trents

    Moderators


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  3. knitty kitty

    knitty kitty

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  4. chrisinpa

    chrisinpa

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Popular Content

Showing content with the highest reputation since 09/14/2025 in all areas

  1. Scott Adams
    Celiac.com 09/18/2025 - Many people believe that celiac disease is a condition that begins in childhood and that if you reach adulthood without symptoms, you are in the clear. This is a common misconception. In reality, celiac disease...
    4 points
  2. Scott Adams
    Celiac.com 10/01/2025 - For people with celiac disease or gluten sensitivity, avoiding gluten is the foundation of treatment. However, many discover that even when they completely remove gluten from their diet, they still experience ongoing...
    3 points
  3. cristiana
    Not a scientific reply, but I thought I'd just chime in to reply the first part of your question: how long? Before I started to have gastric symptoms, I weighed about 66 kilos, and in the course of the following months, I seem to recall I lost about 6 kilos. From memory the last 2 or 3 kilos dropped off even when I was beginning to eat gluten free, from...
    3 points
  4. Rejoicephd
    That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth. She said the combination of the alcohol and sugar would be very likely to worsen my candida problem. She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry. So in summary, I...
    2 points
  5. trents
    The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for...
    2 points
  6. trents
    As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable...
    2 points
  7. petitojou
    Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌 Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months...
    2 points
  8. Beverage
    I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats...
    2 points
  9. knitty kitty
    Yes, I agree, most doctors miss the subtleties of Celiac disease. The AIP diet was designed by a doctor who has Celiac herself, Dr. Sarah Ballantyne. Her book The Paleo Approach is most helpful. The AIP diet eliminates all grains and other pseudo grains like rice,corn and quinoa because they can be irritating to the digestive track. It eliminates...
    2 points
  10. petitojou
    Hi! Thank you so much! This was truly helpful. Most doctors I went to were absolutely uninformed and unprepared to treat a celiac patient. I will check for all the things you shared and focus on healing first! Really really thank you! Have a blessed day.
    2 points
  11. knitty kitty
    Welcome to the forum, @petitojou! I lost a lot of weight, too. I found that I was low in the B vitamins and other essential nutrients. Vitamin B 1, Thiamine, is not usually tested, because blood tests are so inaccurate. Doctors are not familiar with vitamin deficiency symptoms any more. Low thiamine can cause fatigue, muscle weakness, nausea...
    2 points
  12. Peace lily

    Coeliac and Thyroid?

    Yes I have thyroid and have had it for over 30 years and just got diagnosed for cealiac last march.I have been complaining all the years about stomach pain weight lost hair falling out they kept blaming on the thyroid and I am over 70 years old. but what I’ve been reading thyroid,diabetes,should take a closer look,I think autoimmune plays a part.All I know i...
    2 points
  13. trents
    Welcome to the forum, @Celiac50! Vitamin A toxicity is not to be taken lightly. If you suspect that is the case, I would certainly discontinue the beta-carotene supplementation. Vitamin A from natural sources is unlikely to cause toxicity. I would also get labs done to check your levels. May we ask your age? It's been over a year since you began...
    2 points
  14. lehum
    Hi Christina, Thanks so much for taking time to answer in detail and share your story, too. It's a good reminder that we all walk different paths -- and that none of them are right or wrong. It seems like, with time, you've come to be able to identify clearly what your triggers are. I am hoping for this clarity for myself with more time. I am sure...
    2 points
  15. trents
    I think sometimes it is the case when people are diagnosed later in life that the actual onset was years earlier but was not of an acute nature. As it gradually took it's toll on the small bowel lining and other body systems it got to a point where symptoms were noticeable enough to finally prompt investigation and diagnosis. Then people look back in time...
    2 points
  16. chrisinpa
    When I think of it when I was young I remember my mother seeing a gastroenterologist in the 50s and I doubt that they ever knew what was causing her problem/problems at that time.
    2 points
  17. chrisinpa
    I avoid Gluten as much as possible and I seem to be doing ok. Whether Gluten intolerance or Celiac I tell everyone that Gluten isn't good for anyone. Hard to digest. I'm sure we all wonder how many people out there have a problem and have no idea it's the gluten that is causing the problem,.
    2 points
  18. Padgmatic
    I appreciate your struggle. I found out I was celiac at 42 and 19 years later I still make mistakes and learn more about what it means to live a healthy life without gluten. I have to ask: have you done an exhaustive purge of your kitchen? Plastic, wood, non stick cooking items? Until I did this I had issues. Good luck
    2 points
  19. lmemsm
    Thank you for mentioning that. My main reaction to gluten seems to be related to the skin and breaking out. So, I'll definitely take that under consideration when trying to figure out how to better supplement calcium. I'm trying to use lower oxalate and lower histamine greens like broccoli, baby bok choi, collards and Lacinto kale. Recently, I've been...
    2 points
  20. Rogol72
    A friend of mine is in the bar trade most of his life and has never heard of lines being mixed for different type of beers and ciders. Better to stick with cans.
    2 points
  21. RMJ
    Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before. I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
    2 points
  22. Rogol72
    I can confirm this. I no longer have any issues with Iodine since being strictly gluten and dairy free.
    2 points
  23. deanna1ynne

    Inconclusive results

    Thank you both very much. I’m pretty familiar with the various tests, and my older two girls with official dxs have even participated in research on other tests as well. I just felt overwhelmed and shocked that these recent results (which I found pretty dang conclusive after having scott clean labs just six months ago) would still be considered inconclusive. ...
    1 point
  24. ElisaAllergiesgluten
    Hello, good afternoon! I apologize, I didn’t see a notification and I’m just reading this. Thank you so much for sharing your thoughts and the link. Yes you are absolutely right, even so trying to get a response from them has been extremely difficult. They don’t answer but I will your practice of “guilty until proven innocent.” I l...
    1 point
  25. DonnaNM
    Hi Scott, Thanks for this article on vitamin D. Were there any indications of recurring feet nerve pain from reduced vitamin D? This was one of my issues before my Celiac diagnosis. I increased my Vitamin D to 10,000 per day and then hit a level of 102. My feet were much better. However, my doctor told me to reduce my Vitamin D to get below ...
    1 point
  26. cristiana
    Broccoli of all things. Chills, extreme nausea, diarrhea - lasts until it's passed through my system. Very similar to glutening. This started to happen to me some years prior to my coeliac diagnosis. Very odd.
    1 point
  27. Scott Adams
    Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend bey...
    1 point
  28. Wheatwacked
    "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis" Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests. Iodine is important...
    1 point
  29. trents
    @Anne65, yes, presently, in order to diagnose celiac disease, a person must be actively consuming regular amounts of gluten. The first stage of testing is designed to detect antibodies produced by an inflammatory autoimmune reaction to gluten in the villous lining of the small bowel. When you remove gluten from the diet, the inflammation begins to subside...
    1 point
  30. Chanda Richard
    Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that...
    1 point
  31. trents
    Calcium levels as measured in the blood can be quite deceiving as the body will rob calcium from the bones to meet demands for it by other bodily functions. Also, supplementing with calcium can be counterproductive as it tends to raise gut pH and decrease absorption. More often than not, the problem is poor absorption to begin with rather than deficiency...
    1 point
  32. petitojou
    Hi! Thank you Of course! I still live with my family; there used to be six of us, and now there are four. I rarely leave the house or eat out. Although my mother has also been diagnosed with celiac disease, she does not follow the same precautions as I do. I use separate kitchen utensils (different spatulas, pans, dish towels, plates, toaster - almost...
    1 point
  33. chrisinpa
    True......I'll give you that one.
    1 point
  34. trents
    Probably more than have even heard of "celiac disease".
    1 point
  35. chrisinpa
    True......but then I wonder how many people even know what gluten is and where it comes from etc.
    1 point
  36. chrisinpa
    Absolutely. As I had mentioned before, if it were feasible and/or possible, perhaps diagnosis of children by doctors and/or pediatricians for the antibodies would be very beneficial. Perhaps it could be considered a silent disease doing it's damage until really serious symptoms occur?
    1 point
  37. RMJ

    7yo struggling!

    The incidence of autoimmune diseases in general, including celiac disease, has increased. There are various theories as to why. The environment we live in, diet we eat, toxins we’re exposed to, stress levels, activity levels and infectious diseases to which we are exposed are all quite different now. A robust immune system that would have been an advantage t...
    1 point
  38. Scott Adams

    Coeliac and Thyroid?

    The connection between celiac disease and thyroid disorders, particularly Hashimoto's thyroiditis and hypothyroidism, is well-established and statistically significant. Research indicates that individuals with celiac disease have a much higher prevalence of thyroid disease compared to the general population, with studies suggesting between 4-11% of celiacs...
    1 point
  39. Oldturdle
    I just did a quick A.I. check, and vitamin A toxicity has never been associated with a bright yellow vaginal discharge. Large amounts of B vitamin, aside from causing bright yellow urine, can occasionally cause a yellow tinged vaginal secretion. I know that older women sometimes develop a fistula from their urethra to their vagina. If this happened, I...
    1 point
  40. knitty kitty

    Coeliac and Thyroid?

    This article explains how thyroid problems and Celiac are connected... Celiac Disease and Autoimmune Thyroid Disease: The Two Peas in a Pod https://pmc.ncbi.nlm.nih.gov/articles/PMC9312543/
    1 point
  41. chrisinpa
    Maybe the only way to confirm that possibility would be to do (beneficial?) tests on all young children for gluten antibodies which might avoid any and all damage for years before they really get bad?
    1 point
  42. chrisinpa
    Hmmmm....interesting. I know there was some other issues with the Covid shots and it seems like the people with Gluten problems seems to be growing.
    1 point
  43. knitty kitty
    @cristiana, Thiamine is found in meats, which you've cut down on recently. Liver is an excellent source of B vitamins, including thiamine and B12, and iron. Benfotiamine is a great thiamine supplement. It helps promote intestinal healing. Take a B Complex also, and magnesium. Thiamine and magnesium work together. Magnesium will also help relax...
    1 point
  44. knitty kitty

    Major Glutening

    Oh, @FayeBr, you poort thing! I've had episodes similar to yours, taking something that is supposed to help, but makes symptoms worse. You're not alone. Hold tight, we'll get you through this. Acid reflux can be caused by not enough digestive enzymes, contrary to the assumption that overproduction of digestive acids causes acid reflux. The cells...
    1 point
  45. cristiana
    Hello @lehum Greetings from the UK. Another struggler here - and I'm a Moderator on this forum, and have been extremely strict about my diet! My antibodies took years to come down to normal levels. Very annoying particularly when had friends who seemed to be the miracle turnaround celiacs that one reads about (although, of course, I am happy for them...
    1 point
  46. trents
    That's a question I have as well. Who are the appropriate people in high places to lobby. I'm thinking RFK, Jr. might be willing to get on board with this. If the celiac community, not just individuals gut recognized organizational leaders, would come together and present a unified effort with this we might see results.
    1 point
  47. Rejoicephd
    You called it @knitty kitty. I went to another health care provider for another opinion, and based on some tests they did, they suggested I might also be dealing with a fungal issue (candida and/or mold). I saw that you mentioned before in this chain that some people on this forum also get Candida infections. So it seems that I am possibly dealing that...
    1 point
  48. lauramac
    Thank you! Thank you!
    1 point
  49. Zuma888
    I didn't ask a doctor about this actually. I did ask several doctors a long time ago and they told me gluten has nothing to do with hashimoto's. One of them told me to do a gluten challenge to test for celiac, but at the time I was in graduate school so couldn't afford to be even more ill than I was. If you have the symptoms, I really don't advise you...
    1 point
  50. Scott Adams

    Reportable Disease

    Your frustration is completely valid and speaks to a massive, systemic failure in how chronic autoimmune conditions like celiac disease are managed and tracked. You are absolutely right—it is not right. While reportable diseases typically refer to acute infectious outbreaks that require immediate public health intervention (like measles or foodborne illness),...
    1 point
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    • Theresa2407
      Maybe you have a low  intolerance to Wheat.   Rye, Barley and Malt are the gluten in Celiac disease.  It has always been stated Wheat and Gluten, not just a Wheat intolerance.  Barley will keep me in bed for (2) weeks.  Gut, Migrains, Brain fog, Diahrea.  It is miserable.  And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow.  Boy was he off.  But at that time the US didn't know anyone about Celiac.  This was the 1940s and 50s.  I had my first episode at 9 months and did not get a diagnosis until I was 50.  My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product.  It was mostly the cereal industry.  3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction.
    • Gigi2025
      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that?  Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      It is odd that your Tissue Transglutaminase (TTG) IgA level has bounced from the "inconclusive" range (7.9, 9.8) down to a negative level (5.3), only to climb back up near the positive threshold. This inconsistency, coupled with your ongoing symptoms of malabsorption and specific nutrient deficiencies, is a strong clinical indicator that warrants a more thorough investigation than a simple "satisfactory" sign-off. A negative blood test does not definitively rule out celiac disease, especially with such variable numbers and a classic symptomatic picture. You are absolutely right to seek a second opinion and push for a referral to a gastroenterologist. A biopsy remains the gold standard for a reason, and advocating for one is the most direct path to getting the answers you need to finally address the root cause of your suffering. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
    • Scott Adams
      There is a distinction between gluten itself and the other chemicals and processing methods involved in modern food production. Your experience in Italy and Greece, contrasted with your reactions in the U.S., provides powerful anecdotal evidence that the problem, for some people, may not be the wheat, but the additives like potassium bromate and the industrial processing it undergoes here. The point about bromines displacing iodine and disrupting thyroid function is a significant one, explaining a potential biological mechanism for why such additives could cause systemic health issues that mimic gluten sensitivity. It's both alarming and insightful to consider that the very "watchdog" agencies meant to protect us are allowing practices banned in many other developed countries. Seeking out European flour and your caution about the high-carb, potentially diabeticgenic nature of many gluten-free products are excellent practical takeaways from your research, but I just want to mention--if you have celiac disease you need to avoid all wheat, including all wheat and gluten in Europe.
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