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Showing content with the highest reputation since 07/05/2020 in all areas

  1. 3 points
    Dr.Joseph Murray (Gastroenterologist at Mayo Clinic) was interviewed by The People's Pharmacy. His recommendations for celiac disease patients: COVID-19 infection can present as GI symptoms, such as diarrhea, abdominal pain, bloating, and loss of appetite. Don't assume your GI symptoms are from...
  2. 3 points
    You have gotten some great advice on this and other posts. I do have one thing to add. You mention in another thread that you are eating lactose free ice cream and cottage cheese. You may want to drop all dairy until you are doing a bit better. There are some good dairy free ice creams (although...
  3. 3 points
    docaz

    Is it worth getting a second opinion?

    The term gold standard is used for endoscopy but I am not sure that one can really apply it because the gold standard entails that it is the best possible way to confirm or to refute a diagnosis. I think that an endoscopy can only confirm (if read correctly and it is often not) but not refute the...
  4. 3 points
    Scott Adams

    TTG-IgA testing - any insight?

    I can’t speak for other forums, but the info in this forum, which has outstanding long-term moderators, is very good, especially with regard to celiac disease testing. I actually hear far more horror stories coming from bad doctors, for example in this recent thread a poor lady had multiple s...
  5. 3 points
    knitt kitty, that was quite the tome! But I agree. The traditional food pyramid we all grew up on has done our society and immense amount of medical harm and is largely responsible for the spiraling numbers of obesity (with all it's attendant vascular problems) and diabetes, just to name a few...
  6. 3 points
    Wow!! Thanks for sharing, KK. That gives me HOPE. I would be ETERNALLY GRATEFUL if my even some of my physical/mental symptoms improve that quickly with extra B/magnesium!!😁 I try not to blame my docs for not FIRST recommending a course of extra vitamins etc. They weren't taught about it...
  7. 2 points
    Gemini

    TTG-IgA testing - any insight?

    Yeah, good luck with that! There are few doctors who really understand Celiac and how to diagnosis it correctly. According to their criteria, they want you to advance to severe damage because then they can find it more easily. Meanwhile, you go years and more and more damage occurs that can be...
  8. 2 points
    Corinne D.

    Testing for Celiac

    Hi Stephanie. Dermatitis herpetiformis is a form of celiac disease. Apparently, celiacs with DH may not have elevated serum antibodies, but if the skin biopsy is positive, there is no room for doubt. You should most certainly go gluten free as soon as possible. And very strictly too, avoiding all...
  9. 2 points
    The title of the article is: "Is Hydrolyzed Vegetable Protein Gluten-Free and Safe for Celiacs?" Not sure how we got onto this dairy rabbit trail but can we get back on track?
  10. 2 points
    David Dawson

    Sick and losing the will to live

    Thank you so so very very much to everyone who's been so so kind as to reply to my post on here.i cant even put into words just how much its appreciated.it seems I posted on here in the height of having had a few weeks where I was just in and out of bed just so poorly to the point of even being out...
  11. 2 points
    Whey is a dairy product, not from plants I think.
  12. 2 points
    trents

    Blood test results - Questions

    Welcome Emshultz! There are other medical conditions that can cause elevated Ttg. "According to the University of Chicago Celiac Disease Center there are other diseases that can cause elevated TTG antibodies, including Type 1 diabetes, Hashimoto’s thyroiditis, inflammatory bowel disease, ...
  13. 2 points
    Gemini

    Is it worth getting a second opinion?

    There is a lot of misinformation here that I wanted to address.......and this comes from someone who has been diagnosed and successfully gluten-free for 15 years. You can safely eat processed, gluten free items and heal. It might be better to go easy on them in the beginning but it all depends...
  14. 2 points
    RMJ

    Is it worth getting a second opinion?

    In 6 to 12 months you should have the blood tests redone. If the Deamidated gliadin IgA level goes down on the gluten free diet and if your symptoms improve, that would be evidence that gluten really is a problem.
  15. 2 points
    trents

    Is it worth getting a second opinion?

    Personally, I would consider the physician's advice to be wise in this case. What you don't want to happen is to ignore it and suffer irreversible damage to your body (e.g., bone demineralization) a few years down the road just because some of the indicators for celiac disease were not (yet?) positive...
  16. 2 points
    Welcome! No one knows for sure exactly what triggers celiac disease. Doctors suspect stress or an infection (virus or bacteria), but nothing has been proven. For a while it was thought that first-degree relatives had a 1 in 10 chance of developing celiac disease (if they have...
  17. 2 points
    It was totally irresponsible of your doctor not to share your positive celiac disease tests with you last year, and certainly this is even more concerning because you're now pregnant, and having celiac disease and continuing to eat gluten could lead to nutrient deficiencies, something that is critical...
  18. 2 points
    You are going through a normal grieving process. It will take time to master the gluten-free diet and feel better. It will take time for your family and friends to adjust, but they will (if not, maybe they are not worth having as friends). Our whole society is based on food. But look for other...
  19. 2 points
    I agree with Trents. You can live without carbs. Here's an article on how the body utilizes both carbs, and proteins and fats as sources of energy. https://www.dietdoctor.com/low-carb/does-the-brain-need-carbs The body breaks down carbs into glucose which the brain uses for energy...
  20. 2 points
    Scott, Thanks for sharing this research. Here is another article that might help others entitled "Vitamin D and the anti-viral state" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3308600/ I quoted the full citation so others can see at what level OHD Vitamin D has been shown to...
  21. 1 point
    Whitepaw

    Sick and losing the will to live

    I went thru a lengthy rough patch a few years ago. I kept lists of what I ate daily, so I could look for trends, and eliminate suspect foods. Took the lists to every GI appointment. I was down to maybe 7 foods that caused me no problems. Based on this, and my complaints of bloating and heartburn...
  22. 1 point
    Scott Adams

    To Diagnose Or Not Diagnose

    I would only go this route if you miss gluten so much that you will need the formal diagnosis to stay gluten-free, or if you need the diagnosis to get further follow up an treatment by doctors, but definitely talk to your doctor about this possibility. The first thing to find out would be whether...
  23. 1 point
    Scott Adams

    Writing an editorial

    There is www.celiac.org and https://www.beyondceliac.org/
  24. 1 point
    I think the anti-TTG is showing how things are going with your daughter, not every doctor looks at anti-DGP.
  25. 1 point
    I do not know. I would be worried about gluten. Seriously, I live in California where it is legal. Problem is there is a ton of illegal pot. Even our state is complaining as they not getting the tax revenue. So who is making sure they are proving the real unadulterated thing? That...
  26. 1 point
    GFinDC

    Testing for Celiac

    Right, DH is a condition only celiacs get. The antibodies get deposited in the skin and cause irritation. Also people with DH sometimes don't show positive on the blood work. Maybe because the antibodies are in the skin rather than circulating in the blood. DH can be very sensitive to gluten...
  27. 1 point
    Ah, sorry for the mis-communication and it was taken from other sources that I did not link. When I meant uneducated, I was comparing Southerners who did not process corn the way Native Americans did, thus causing Pellegra. Uneducated might not best be the best word, maybe culturally ignorant is...
  28. 1 point
    Blunted villi can range from mildly blunted to almost flat. If your villi have only lost the tip and are rounded (blunted) instead of greatly reduced in size, the absorption is mostly unaffected. If you want to go into more depth you could ask the pathologist to reviewed the slides to send you an...
  29. 1 point
    Hi, Dorothy! I'm so sorry you've been through so much. But you're not alone. Your story sounds similar to mine, gastrointestinal problems as a child that got ignored, laughed at, or simply dismissed as psychosomatic, symptoms changing and worsening health as I got older. I look back...
  30. 1 point
    knitty kitty

    Ever have visual issues ?

    You might find this website helpful.... USP https://www.usp.org/dietary-supplements-herbal-medicines https://www.quality-supplements.org/verified-products/verified-products-listings And, yes, I've had visual problems related to vitamin deficiencies. Hope...
  31. 1 point
    Shecouldeat

    High Tg Iga results

    Yes! I was researching candy today and I will be enjoying Twix and Kit Kat’s during this time. Oreos too. If I have to eat gluten and feel like crap I may as well enjoy it. I eat less gluten than most so I’m well positioned for this. Overall, I’m looking forward to eliminating and feeling better.
  32. 1 point
    cyclinglady

    Diagnoses

    Hi! Genetic testing is used to help rule out celiac disease. That is because about 35% of the population has the celiac genes. That is a ton of people! Only a few actually go on to develop celiac disease. I am sorry that your were given such poor advice. If you do have celiac...
  33. 1 point
    Scott Adams

    Diagnoses

    If you've been happily gluten-free for 10 years I don't see any reason to start eating gluten again to be retested, unless you're not happy with the diet, and doubt your self diagnosis. If you need a diagnosis to stay on the gluten-free diet, then it probably makes sense to do a gluten challenge...
  34. 1 point
    Just an idea: Is the positive vs negative cutoff for your recent test the same as the previous ones? Each manufacturer sets their own numerical ranges. I think it is a good idea that you’re having another endoscopy. Hope it solves the mystery.
  35. 1 point
    Julia, I see this was your first post. Sorry, I neglected to say, "Welcome"! You should also look at the possibility of having developed allergies to non gluten food items. Last year I experienced several periods of intractable vomiting and diarrhea. I began to look at the patterns of my...
  36. 1 point
    What do you mean when you say your blood work is "almost normal"? What is not normal about it? A number of recent studies have demonstrated that many or most celiacs who believe they are eating gluten free are actually practicing "low gluten" eating because of cross contamination. This is particularly...
  37. 1 point
    Ditto. It sounds like to me you may need inpatient care to help you manage your various issues and get them back under control. And hiding your current struggles from your fiance is probably not good for the health of the relationship, though I understand there is probably a strong element of shame...
  38. 1 point
    I'm seeing Dr. Stephen Wangen from IBS Center right now. I am working on some labs for him to identify food sensitivities. He also gave me some enzyme pills to help digestion and a GI powder. I'm hopeful. He listens well and understands a lot of my frustrations. He usually waits for the labs but...
  39. 1 point
    Dr. A et Al, Hopelessly Confused question was why the 2nd test was negative despite eating gluten. And why Cylinglady said "Wow" ....don't know...and "Wow Again".... It is puzzling to think back and investigate it a little... The University of Chicago FAQ tells some Virus' can...
  40. 1 point
    Celiac.com 07/09/2020 - Celiac disease is an autoimmune disease that occurs in genetically predisposed individuals. It is estimated to affect 1 in 100 people worldwide, and is treated by a gluten...
  41. 1 point
    When your doctors (or you) suspect celiac disease, they are looking for antibodies in your blood. Celiac disease is an autoimmune disorder like lupus or rheumatoid arthritis. The small intestine is destroyed by your own body. Gluten just “turns on” the attack process. If you have a w...
  42. 1 point
    Ferguston, You might to try some Molybdenum. Here is some articles about it.....it is key in turning around a Candida infection....it helps us detox... The symptoms could be from a Sulfite allergy associated with low Molybdenum and thus a Candida infection... https://nutrientssolutions...
  43. 1 point
    Ferguston, Maybe this article will be helpful to you. It's about SIBO and the need for extra thiamine when you eat a lot of carbohydrates.... https://www.eonutrition.co.uk/post/thiamine-deficiency-a-major-cause-of-sibo Thiamine is water soluble and is easily flushed out of your system...
  44. 1 point
    Kate333

    multi grain cheerios ?

    I would not trust ANY packaged/processed food, esp. Cheerios which, is packed full of garbage like most commercially-made cereals (additives, artificial flavors/colors, high fructose corn syrup)--much of it hidden by use of exotic, confusing content names, designed to fool even the most educated...
  45. 1 point
    DJ, You can take just the B-50 and Magnesium.....but be sure to take it 2x to 3x with meals. The best B-1 form is one of the Fat Soluble forms Knitty Kitty already mentioned... So take your B-complex (Enzymic is better) and a Magnesium either as a Glycinate (anytime including bedtime...
  46. 1 point
    Hi, It is much easier to get the correct test results by staying on the gluten-free diet before testing. Going off gluten and then intentionally going back on gluten for testing can cause very unpleasant symptoms. Some people say it makes them feel worse than before. You could ask the...
  47. 1 point
    Kat333, If you are losing weight you should consider SIBO or Refeeding Syndrome presenting as a Celiac Crisis.... Here is a study about it....entitled "Refeeding syndrome in adults with celiac crisis: a case report" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5791168/ You might...
  48. 1 point
    itchycrumpet

    Undiagnosed DH

    thank you for sharing and the support jodi will look them up - thanks
  49. 1 point
    Jenni40, If you were in a third world country especially one where rice is your main diet they would of diagnosed you with (Wet) beri beri...because that is where doctor's see it and recognize it still.... If it happens in wheat eaters.....there is a mental bock about people eating wheat...
  50. 1 point
    Excellent article! I wish the Celiac community and restaurant industry would take cross contamination seriously. A restaurant can put a gluten-free symbol next to whatever they want, but if the kitchen and staff are not aware of the negative impacts the prepping surfaces, cooking areas, ovens...

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    • I do not recall exhaustion.  But pain and nausea that occurred...humm....when I ate.   Even traveled without eating all day.  I was like my Dad just consuming liquids or not eating.     I also recall being afraid to eat my first meal post surgery.  But I ate and had no pain.  
    • Wow... This is so good to know. Thank you so much for this information. I'm sorry you had to go through that. I'll DEFINITELY bring it up again and say I'm very concerned about my gallbladder and a HIDA scan is necessary.  Can I ask what your symptoms were CyclingLady? Did they involve pain, nausea and exhaustion? 
    • They do a contrast with the HIDA scan.  Then they inject a hormone that causes the gallbladder to squeeze and empty.  This is called the refractory rate.  If your gallbladder is not emptying, you are going to suffer, you need that bile to digest any fats.  Eventually the gallbladder stops functioning and it can rot ( infection).   That is what happened to me.  Emergency surgery while on a business trip.  Not fun.     Gallbladders are a family curse.  All were non-functioning.  No stones. Look good on all other tests.  They thought my Dad had cancer because he was in so much pain and stopped eating solid food.  

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