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Showing content with the highest reputation since 09/14/2025 in Article Comments

  1. 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
  2. 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
  3. 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
  4. Scott Adams
    Since GliadinX has been shown to break down the harmful part of gluten in the stomach it's possible it could help to keep antibody levels lower, but this is assuming that you are getting gluten in your diet, and each time you are taking them right before you eat. They should never be taken in order for you to eat regular gluten foods, only to avoid small...
    1 point
  5. DonnaNM
    Thank you for your responses (especially your detailed article on all the supplements, so helpful.). I take a lot of supplements as well. I will check them.
    1 point
  6. 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
  7. RDLiberty
    That's what I thought, but wanted to confirm. Thank you so much!
    1 point
  8. RDLiberty
    Yes, I was 22 when I was diagnosed via blood test done by my endocrinologist (I'm also type 1 diabetic and have other auto-immune issues). I was surprised because I was asymptomatic at the time, though I will admit that since being gluten free, I have a lot less, in fact almost no, unidentified stomach aches, etc. In general, I have very few food sensitivities...
    1 point
  9. 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
  10. ShariW
    I have found incidentally that I have a bad celiac-like reaction to inulin, chicory root fiber, and those artificial sweeteners. I didn't know those fiber additives were a recognized problem - I need to look more into those high-fodmap foods. Why on earth does Chobani put chicory root fiber in a yogurt drink???
    1 point
  11. Scott Adams
    Correct, the things listed in the article may mimic celiac-like or IBS-like symptoms, but would not cause the damage that gluten/gliadin does.
    1 point
  12. Adeling
    If you are lucky enough to be diagnosed young and if you stick to a strict gluten free diet, most people will not need to heed these pieces of advice. Being strict with a gluten free diet is the most important thing. I've heard way too many people say, "It only upsets me a little", or, "I can get away with a taste".
    1 point
  13. Jim Chris
    Wow! A lot of good information that explains a lot of what has happened to me and I didn't know why. Although I always carefully read ingredients labels, I will pay more attention to what was explained in this article. Thank you!!
    1 point
  14. KelleyJo
    Thank you so much for posting this. I was beginning to wonder if I was crazy. I'm lactose intolerant and have celiac, and people are so happy when they give me gluten free food, but I check the labels and see gums and fake sugars and dairy etc, and I say thanks but no thanks. They look at me like I'm nuts when I try to explain that gums trigger my epiploic...
    1 point
  15. Ashleymc
    For me, it’s rice and especially brown rice (the hull of rice is brown and contains the highest percentage of the rice protein - aka rice gluten) it affects me very similarly to gluten. I think many people with celiac struggle with other grains as well.
    1 point
  16. Juliach
    Very helpful information. It is so hard to follow the strict guidelines of eating when our main focus is to be gluten free. While most of us always battle bloating and body aches, we scratch our head trying to figure it out because everything I ate was gluten-free! This is a reminder for us to dig deeper into looking at the ingredient list before eating it...
    1 point
  17. Mrs. Cedrone
    I agree great information. I was diagnosed in my 20s with Celiac Disease and remain on a very strict diet. I have found recently that some "Gluten Free" items have those ingredients and I have suffered for that. Thank you.
    1 point
  18. Hopeful1950
    Great information in this article. Chicory root and inulin are the absolute worst! One Kind Bar will put me in misery for sure. Xanthan gum and maltitol also not good. I have been strictly gluten free for a very long time, but still cannot tolerate these ingredients.
    1 point
  19. Wheatwacked
    Celiac Disease can cause Vitamin D deficiency.
    1 point
  20. trents
    Fascinating! As with all GMO products, however, there will be questions of whether or not it would trigger other immune system reactions as a new foreign protein substance. Don't get me wrong. I'm not against GMO technology in a carte blanche sense. I just think each GMO product needs to be evaluated on its own merits and risks and there needs to be thorough...
    1 point
  21. Anne65
    Thanks, everyone. I think I'll stay gluten-free and try to avoid the occasional issues that come up. It's not worth it.
    1 point
  22. 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
  23. Anne65
    I was tested after 50, and years of enduring irritable bowel disease, but this time it had already been suggested that gluten intolerance was the culprit. I had removed all gluten from my diet for 6 weeks. The symptoms were better and my blood tests (no scope) we negative. Now I read I should have kept on eating gluten even though I had a pain free life...
    1 point
  24. JoJoColes
    70 and diagnosed with celiac disease Diagnosed with discord lupus and skin lupus three years prior. I have had stomach issues since the birth of my first child in 1978. Constipation, bloating, swelling, always gassy. I was told to eat more roughage and drink more water. My blood test numbers were so high there was no need for biopsy. My endocrinologist...
    1 point
  25. chrisinpa
    True......I'll give you that one.
    1 point
  26. trents
    Probably more than have even heard of "celiac disease".
    1 point
  27. chrisinpa
    True......but then I wonder how many people even know what gluten is and where it comes from etc.
    1 point
  28. trents
    It's usually better to use the term "gluten intolerance" rather than celiac disease when talking to the uninitiated about these things. Gluten intolerance covers both celiac disease and NCGS (Non Celiac Gluten Sensitivity or just gluten sensitivity for short).
    1 point
  29. chrisinpa
    I had that same thought......if a friend has some symptoms that seem familiar to me I would certainly mention that possibility. I can imagine if you mentioned about getting tested to some people you might have them give you that "deer in the headlights" look. I do know that with some people you even mention Celiac and they have no clue. One good thing...
    1 point
  30. trents
    That's why we have the term "silent celiac". And it might not be a stretch to say that most of us have fit into that category. But when you see those early symptoms in friends or family and try to encourage them to get tested, you usually get blown off.
    1 point
  31. 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
  32. Russ H
    Data from NHS England shows that most people are diagnosed between the ages of 40 and 60, with the mean age of diagnosis 45. For those diagnosed later in life, I wonder at what age the condition actually begins? Blood screening suggests that most people with the condition are not diagnosed, and that is likely because they have no symptoms or because...
    1 point
  33. chrisinpa
    I should have studied it more , but there are food allergies and then there is an autoimmune response to gluten, but whether it is just considered an allergy or an autoimmune response or both, I would think peanut allergy can be one of the worst and be life threatening from what I've read
    1 point
  34. trents
    @chrisinpa, this is done on children in Italy as part of their screening as they entering the school system.
    1 point
  35. 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
  36. 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
  37. ShariW
    Forgot to add: I asked my gastroenterologist why this happened at such a late age for me. He said people can develop celiac disease or gluten sensitivity at any age.
    1 point
  38. Peggy M
    Add me to that list of people in their 70's. What they think triggered mine is the Covid shots. I attended a luncheon last week that was made all gluten free since so many attending were either gluten free or celiac. What a joy it was to be eating what everyone else ate. No one knew that!
    1 point
  39. ShariW
    Late diagnosis for me, too. In my 70's, but I had been having intermittent problems for a while, and increasingly bad reflux. In desperation, I did my own elimination diet - dairy, eggs, then wheat eliminating each for about 2 weeks. When I cut out the wheat, the difference was amazing! I also found that I had a Celiac gene through one of the ancestry testing...
    1 point
  40. 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
  41. Melissa and Maren
    What can everyday families do to support this effort? How do we make this happen?
    1 point
  42. chrisinpa
    Excellent article. That very same thing happened to me at 75.
    1 point
  43. pweidema
    Very informative. Thank you!
    1 point

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    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Theresa,  A few of my friends have your same story. You may be right about barley, etc.  18 years ago at a football game while clapping, suddenly my 4th finger was in agony.  It looked like a vein had burst. It was blue for a couple hours, then disappeared.  Finally realized it happened every time when drinking beer.  It's occurred several times over the years when opening a jar, lifting something that was a bit heavy, holding on to tight to something.  Immediate icing stops the pain and discoloration.  Now avoiding wheat in the US, it rarely happens.  Thanks for the reminder.  Will have Entero Labs run another test. Unfortunately they've relocated to Switzerland/Greece.
    • Russ H
      Blood results

      By Russ H · Posted

      The EMA test is an old and less sensitive test for anti-tTG2 antibodies. It relies on a technician using a microscope to check for fluorescence of a labelled substrate (typically monkey oesophagus or human umbilicus), giving a simple positive/negative result. It is similar to running a standard anti-tTG2 test but with a high cut-off, making it more specific but less sensitive. Transient rises in tTG2 can be caused by e.g. viral infections and inflammation. Very high levels of anti-tTG2 (>x10 standard range) are almost certainly coeliac disease but moderately raised levels can have several causes apart from coeliac disease. Other food allergies can cause villi blunting but that is much rarer than coeliac disease or other non-coeliac causes. Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies
    • Theresa2407
      How Come Gluten Didnt Bother Me In Italy

      By Theresa2407 · Posted

      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
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Thanks much Scott.  Well said, and heeded.   I don't have Celiac, which is fortunate.
    • Scott Adams
      Possible celiac - need advice

      By Scott Adams · Posted

      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:    
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