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  1. trents

    trents

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    Scott Adams

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Popular Content

Showing content with the highest reputation since 07/30/2024 in all areas

  1. 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
  2. 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...
    4 points
  3. 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
  4. 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...
    4 points
  5. 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
  6. DebJ14

    Newly Diagnosed

    Personally, I would get a new GP. Advice to continue eating gluten, even after a Celiac disgnosis, is ridiculous. Clearly the GP knows nothing about the disease. That advice could be dangerous to your health. I too found out by accident. I was searching for help with ulnar neuropathy. The first doctor took xrays of my elbow and hand. Surprise, surprise...
    3 points
  7. Beverage

    Chest pain from celiac

    Could you be having acid reflux? I used to get it soooo bad before I was diagnosed, now very rarely. I didnt have stomach upset, aka silent reflux, but pain in chest (thought I was having a heart attack) and food would get stuck from the esophagus irritation. The things here really helped, especially raising head of bed, sip of apple cider vinegar before...
    3 points
  8. leenora
    Hi Mags, I was diagnosed almost 4 years ago at 57y.o, also of Irish heritage, my mom's from Co. Galway. Have your doctors run an immune globulin panel. My IgA was undetectable & that is what the usual bloodwork for celiac relies on. For example, my tTG IgA was below 2 & deamidated Gliadin IgA was 5, both in normal range. In other words, you do not...
    3 points
  9. cristiana
    We've definitely all had such thoughts. But as Scott says, it does get easier with time. I'm not sure where you are posting from but in England where I live, over the last ten years or so most things I missed at first now have gluten free substitutes. I still miss Twix bars, and chocolate Penguins (a type of biscuit) but I'm hoping sooner or later someone...
    3 points
  10. cristiana
    Hello there @maylynn I'm a slow healer from the UK. I sympathise. Despite three endoscopies which showed nothing wrong, I frequently suffered from a very sore stomach, bloating, feeling queasy. For some time I was taking the wrong iron supplement (Floradix instead of Floravital - the former has gluten in it, but the latter none). But...
    3 points
  11. trents
    Welcome to the forum, @Redlima! Not sure if this could relate to your issue but it is well-known by the celiac community that gluten has an opiate-like effect that causes some people to experience withdrawal symptoms upon going gluten free. This usually manifests itself within the first few weeks. So, I'm not sure that fits with your time frame. Also...
    3 points
  12. 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...
    3 points
  13. 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
  14. 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
  15. 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
  16. 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...
    3 points
  17. Helen Vajk
    Amen. Even worse than the food labeling is the near-complete absence of medication labeling.
    3 points
  18. cristiana

    Family education

    @sillyyak52 Welcome to the forum! I'm just about to go away for a couple of days but read this and just had to reply. I am so sorry for what you are going through... it is really tough. Perhaps finding a short video online which explains the seriousness of celiac disease might help. Just sit your family down and say, "Please just watch this...
    3 points
  19. dublin555
    I totally agree, it’s so much more than just the physical struggle that occurs, there is the emotional struggle that goes along with it. It’s almost like you’re always navigating people who are uncomfortable with your needs and that pressure really wears you down. The fact is, the one that really did care will understand. This has nothing to do with you b...
    3 points
  20. RMJ
    I am also asymptomatic. Not everyone with celiac disease reacts the same way to the same amount of gluten, so it is impossible to say for you whether or not such small traces of gluten would be safe. I am tested for tTG-IgA and DGP IgA and IgG annually. My DGP IgA went up once when I was using a certain brand of supposedly gluten free flour, it went...
    3 points
  21. cristiana
    Hi @DayaInTheSun Welcome to the forum! I've been a Mod on this forum for some years now and your feelings are shared by many of us. I am not sure how long you have been diagnosed, but in my own case I do find that time has helped. It was pretty exhausting at first trying to explain to friends but they now have a pretty good grasp of coeliac...
    3 points
  22. pweidema
    Two things: 1. If you are using drops 3x a day you should be sure to use preservative free. The preservatives themselves can cause irritation. 2. If the problem does not resolve, you may want to have a rheumatologist check for Sjogren's. There appears to be a relationship between celiac and Sjogren's.
    3 points
  23. sh00148
    Morning All, Just an update, I got an urgent appointment through my contact with PALS. The doctor confirmed her levels were the highest possible so she likely had higher levels of inflammation. Since the appointment, they ordered a second set of bloods, but as many of you confirmed he felt there was no doubt she was coeliac so asked us to start...
    3 points
  24. trents

    Celiac Maybe a Possibility?

    Yes, get serum antibody testing done for celiac disease. You could also have NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common...
    3 points
  25. Wheatwacked
    It seems you have proven that you cannot eat gluten. You've done what your doctors have not been able to do in 40 years. That's your low vitamin D, a common symptom with Celiac Disease. Zinc is also a common defiency. Its an antiviral. that's why zinc gluconate lozenges work against airborne viruses. Vitamin D and the Immune System+ ...
    3 points
  26. RMJ
    I’ve had on and off swelling of a salivary gland below my jaw - sialoadenitis. It was very visible when it swelled though.
    3 points
  27. AnnaNZ
    I started greying in my 40s, gave up gluten in September 2023 aged 59, have taken courses of Vitamin D, B complex and zinc and my completely grey hair has started to regenerate dark brown. Real visible proof of malabsorption.
    3 points
  28. ddk37

    Gluten Free Bread

    I need to correct something I wrote earlier this thread. The energy bars from Costco no longer have the Gluten Free certification on their labels. It disappeared sometime this year. The ingredients do not contain wheat, rye or barley but this product is processed in a facility where they also process items with wheat. I assume this is the problem. I...
    3 points
  29. Scott Adams
    It definitely makes sense to get your vitamin & mineral levels tested before you start supplementing, and unfortunately my doctors never recommended this approach at the time of my diagnosis, nor did they ever recommend any supplementation. Unfortunately this led to many years of dealing with gluten ataxia issues that were mostly only resolved decades...
    3 points
  30. KDrutz
    Wondering if they tested both organic and non-organic gluten, and if herbicides or pesticides exacerbated the inflammation response. My personal experience is that I suffered with seasonal allergies and cat allergies for years until I stopped eating gluten (when my daughter was diagnosed with Celiac). After six months or so, all of my allergies were...
    3 points
  31. trents
    This is truly a breakthrough in the diagnostic realm! Hopefully, this technology will become widely available sooner than later and save a lot of people a lot of misery in the process of trying to get a diagnosis.
    2 points
  32. Zuma888
    Thank you for your response. You are right, this is not worth the damage to my thyroid since I know gluten is bad for me anyway. I stopped the challenge and did the IgA and tTG-IGA tests and am waiting for results, although I know it is likely they will be false negative anyway. I figured since I wasn't ever really strict about cross contamination, they...
    2 points
  33. mytype1diabetes
    Thank you all for your kind wishes, it means so much. The information you've all shared has been so useful. We have a great diabetes team and trust the consultants decision to wait a few months to repeat the blood test. We also don't want to put her through any more tests than she needs as it's so tough on her and us! It feels unbearable waiting when...
    2 points
  34. trents
    I would think that as long as you keep your food on a wrapper or on a paper plate you would not be at risk for cross contamination. You may be overthinking it all which is common for those in the first year of the celiac journey. But let me ask you. Are you feeling self-conscious about having a celiac diagnosis? I notice the term "isolated" in your thread...
    2 points
  35. SMK7
    This was the advice from the GI physician: "We discussed that your work-up is equivocal for celiac disease due to discordant serologies and biopsy results. As we discussed the gliadin DGP Ab IgA has a lower sensitivity (87%) and specificity (80-95%) for celiac disease compared to tissue transglutaminase Ag IgA (sensitivity of 95%, specificity of &gt...
    2 points
  36. 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...
    2 points
  37. aperlo34
    @cristiana Yes - just to add to this: my ferritin went down after my first 2 infusions (which were 8 months ago), so I got more infusions a couple of weeks ago. From those alone, I'm feeling better. It's a work in progress! Be patient! I was also taking iron supplements the entire time.
    2 points
  38. CJF
    Thank you for your response. I had read that they are more careful in the UK and the wait staff are much more aware. I always bring gluten-free snacks with me when I travel even here in the US. Airports are a nightmare to find anything that is gluten-free to eat. If you are lucky enough to find a Chick-fil-A in the airport the fries(chips) are a safe...
    2 points
  39. cristiana
    I agree with Trents. And if you already have other health issues, it is just one other thing to have to think about. But on the matter of other health issues, depending on what they are, you may find that coming off gluten might help, which could be an unexpected bonus.
    2 points
  40. trents

    New to this diagnosis

    Welcome to the forum, @Beagirl! What you are feeling is what we have all felt to one degree or another and we typically feel it more intensely when we already have a laundry list of health issues to work around. It's often the result of a sense of loss . . . of having to say goodbye to some good foods that we enjoy that may have been part of a shrinking...
    2 points
  41. 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
  42. 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
  43. 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
  44. Manaan2
    @knitty kitty I can't thank you enough! My husband and I already started looking into those supplements. We definitely plan to give it a try. We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it. We've made many attempts to gradually decrease but...
    2 points
  45. Scott Adams
    Celiac.com 02/06/2025 - Dining out with celiac disease or gluten sensitivity can be a challenge, but it doesn’t have to be overwhelming. With more restaurants recognizing the importance of offering gluten-free options, people with dietary r...
    2 points
  46. Scott Adams
    Celiac.com 11/04/2024 - Celiac disease is an autoimmune disorder that primarily affects the digestive system, but its influence extends far beyond the gut. When individuals with celiac disease consume gluten, an immune response is triggered...
    2 points
  47. trents
    No, it can't be the real cause of celiac disease because celiac disease existed long before genetic modification technology existed. There is historical evidence of the existence of celiac disease from ancient times. Please provide links to support your claims and ideas about GMO wheat pollen "contaminating the entire Global wheat Supply" and being "the real...
    2 points
  48. Wheatwacked
    During this entire discusssion of the immune system there was no refefernce to the fact that vitamim D regulates T cells
    2 points
  49. Vincent pemberton
    After reading your post, I messaged my doctor and they sent me in to do blood work, I asked for an entire vitamin screen along with it. I did buy some B1 and it helped tremendously, I did give blood before taking the vitamin to ensure accurate results. My doctor isn’t worried about me doing the gluten challenge, so I’m praying the celiac panel test shows som...
    2 points
  50. trents

    Celiac and chronic gastritis

    Welcome to the forum, @McNeill! Gastritis, GERD is common in the celiac population. It was/is one of mine as well. Mine is complicated by a hiatal hernia such that my LES (Lower Esophageal Sphincter) doesn't seal well. Ann, you would so well to look into histamine intolerance/MCAS (Mast Cell Activation Syndrome) and a low histamine diet. The...
    2 points
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    • trents
      If your total IGA is low then the values for the other IGA tests cannot be trusted. They will be depressed. Celiacs who have the DQ2 gene typically are on the more sensitive side as opposed to those who only have the DQ8. But keep in mind that having either or both of those genes does not equate to having celiac disease as 40% of the general population have one or the other and only about 1% of the general population develops active celiac disease. Genetic typing can be used for ruling it out, however. Because of the low total IGA, symptoms and the possession of the DQ2 gene, my suggestion would be for you to go seriously gluten free for a few months and see if your symptoms improve. It may be the only way you can ascertain if you are gluten intolerant because of the low total IGA.
    • Cat M
      Ah ok, I just saw didn’t even post the DGP IgA at all. 😫 I started with itching and hives Jan 2024, been taking a ton of meds and on Xolair and even that is not providing total relief. The other primary symptoms: intermittent but worsening abdominal pain, diarrhea and bloating. This summer I am just exhausted. I uploaded my 23andMe data to genetic lifehacks and discovered quite a few variations, including DQ2, MTHFR, VDR and I have always had very low ferritin, vitamin D and B12. I still think that mast cell disease makes the most sense, but latest labs show I am barely in range for thiamine, zinc and vitamin A, so the GI stuff feels more important to figure out than the hives right now. I did SIBO testing this morning. TTG IGA <2   0-3 is negative TTG IGG  3   0-5 is neg DGP IGA 21    20-30 is weak positive DGP IGG 4    0-19 is negative Although total IGA is not resulted, there is a footnote stating it was low and the reason they ran IGG.  
    • Scott Adams
      This is an interesting case. A positive tissue transglutaminase (tTG) antibody with a negative endomysial antibody (EMA) and normal duodenal histology can present a diagnostic challenge, especially in an asymptomatic patient. While the absence of villous atrophy and negative EMA suggest that the likelihood of active celiac disease is low at this time, such serological discordance may still warrant monitoring. Some individuals may be in the early stages of celiac disease, often referred to as potential celiac disease, particularly if they carry the HLA-DQ2 or DQ8 haplotypes. HLA typing can be quite helpful in this situation; a negative result would virtually rule out celiac disease, whereas a positive result may justify periodic follow-up to monitor for evolving disease. The risk of progression to overt celiac disease is not well defined but appears to be higher in children, those with a family history, or those with autoimmune conditions. In this case, routine follow-up including repeat serology and consideration of symptoms or new risk factors over time would be a reasonable and cautious approach. For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Scott Adams
      Have you tried to start a gluten-free diet since your diagnosis in 2019?
    • trents
      Welcome to celiac.com, @Wamedh Taj-Aldeen! Just curious, what is your relationship to the patient? Are you the attending physician? A medical student? A consulted physician? Was a total IGA test ordered? Some physicians are under the dated and mistaken impression that such is only necessary in young children. If total IGA is low, other IGA antibody numbers will be artificially depressed. By the way, it is not unusual to have a positive TTG-IGA and a negative EMA. Are the TTG-IGA numbers borderline high or unequivocally high? There are other diseases and medical conditions that can cause elevated TTG-IGA numbers besides celiac disease but when this is the case, the numbers are usually not dramatically elevated. It can also be the case that villous damage was patchy and affected areas were missed during the biopsy. Or, onset of celiac disease was very recent and villous atrophy has not yet progressed to the point of detectability.  We also have occasional anecdotal reports in this online community of positive antibody testing with negative histology, as you report. But we also know that gluten intolerance can manifest itself apart from enteropathy. It can damage other organ systems. Many celiacs are of the "silent" type, meaning there is an absence or a relative absence of symptoms until the disease has become advanced and there is significant damage to the villous lining or other organ systems. But to answer your questions: 1. I would definitely pursue a routine follow-up and recheck of the antibodies. And, I would order a complete celiac panel including total IGA and IGG stuff in say, six months. Sooner if symptoms manifest. 2. It is impossible to say what is the risk of the future development of over celiac disease. I refer you back to my #1 above concerning rechecking.  3. I would definitely pursue HLA DQ2/DQ8 typing as it can be used as a rule out for celiac disease, though not quite with 100% dependability. I hope my thoughts prove helpful to you.
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