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Aretaeus Cappadocia

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Everything posted by Aretaeus Cappadocia

  1. Aretaeus Cappadocia
    @Lotte18, when you say "bread", what is your requirement? Is it sufficient that you can butter it and eat it with a meal, or do you mean a robust sandwich bread that won't break apart with rough handling? I've been experimenting with bread and find it relatively easy to make the former (mix buckwheat flour/flaxseed meal/baking powder, bake and eat) but it...
  2. Aretaeus Cappadocia
    From time to time I think about your post and your situation. Did you ever come back here after making the post? Was @trents information helpful? Do you still want help and support from this community? It seems to me you are starting from a deep hole and you don't see a way to jump out. Maybe by going step by step you can climb part way out...
  3. Aretaeus Cappadocia
    I stumbled onto this story, and some other old stories of similar topics while looking for something else. I would love to see one spread sheet of various trials/programs that lays out their targets, how far they are/got, whether they are recruiting now, and why the program was terminated. For the record, a quick google search today gave me the...
  4. Aretaeus Cappadocia
    I volunteered for a total of 3 this year (that's all I found). All rejected me, but one only rejected me because I don't live near a study center for the trial, so maybe if they open new trial centers they'll contact me. https://celiac.org/icureceliac/participate-in-research/ - AVALON is a Phase 1 clinical trial assessing VTP-1000. Phase I trial...
  5. Aretaeus Cappadocia
    Hi Lotte, Just to clarify one point: I understand that there is refractory celiac where gluten free diet does not abate the disease, and I'm sure there are also cases where someone thinks they are eating gluten free but there is something they missed. Gluten free diet is not a 100% guaranteed cure. However, gluten free diet is a very effective treatment...
  6. Aretaeus Cappadocia
    I make this salad about once a month and sometimes I make a double batch. It's easy to make, versatile and nutritious. The main part of this recipe is sorghum, roasted cherry tomatoes, a robust green, and the dressing. I find that kale is the best green to use but I've also used arugula, beet greens, mixed baby greens and finely chopped broccoli. I've...
  7. Aretaeus Cappadocia
    @Lotte18, thank you for providing this page from the research proposal. Some comments, if I may (apologies for what you already know): They start by saying that previous research has shown that it's possible to modify the HLA-DQA1 gene and have that new version expressed "in humans" (not sure if they mean intact humans or just cells in culture). This...
  8. Aretaeus Cappadocia
    Not really. The "locks" sit on the outside of the cell while waiting to meet their key. This part of the process does not involve the nuclear pore complex.
  9. Aretaeus Cappadocia
    As @trents wrote, there are a lot of "asymptomatic" celiacs. My situation was similar. I didn't think I had any symptoms and my diagnosis came as a surprise (I only got tested because my child was diagnosed). Initially I was skeptical but I went on a really strict gluten free diet (as best I know no exposures) in support of my child. Have you had followup...
  10. Aretaeus Cappadocia
    HLA molecules are like locks, waiting to be unlocked with their specific key. The "keys" are little molecular signatures that typically derive from infectious/parasitic agents, but sometimes there are cases of "friendly fire" where the system is set off by something benign or even useful to us. So, the HLA molecule collection is a line of defense in our immune...
  11. Aretaeus Cappadocia
    Thank you for the info but I'm really not interested in going down that rabbit hole. If General Mills labels Cheerios with "gluten free" I am inclined to trust that, at least until someone meets a high standard to prove them wrong, which neither of us has seen. I'm still not going to eat Cheerios (or any other form of oats) for the foreseeable future...
  12. Aretaeus Cappadocia
    If you or your brother have children, they should be informed about all of this because they would have an increased risk for celiac themselves. I imagine you would have told your children (if you have any) but your brother might be inclined to dismiss it.
  13. Aretaeus Cappadocia
    yes, definitely old news by now. I posted in response to a reply posted on this topic this week. Sticking with the original story, I googled product recalls related to MAM's original claims. Did not see any so I am guessing MAM's claims of gluten contamination did not hold up to scrutiny. Trying to be objective about that whole controversy, to me GFW...
  14. Aretaeus Cappadocia
    It should be noted that Gluten Free Watchdog has voiced concerns about the methodology used by MomsAcrossAmerica's lab for their gluten testing. I don't have access behind their paywall, but here are 2 relevant public posts from them on this topic. (tldr: GFWD seems to believe that MAM's lab could have gotten false positives and they explain why they believe...
  15. Aretaeus Cappadocia
    Your concerns are reasonable about the celiac risk aspect, and getting additional medical input is a good idea. Obviously I don't know the extent of your child's misalignment, but please don't think of it as just a cosmetic issue. Braces improve bite alignment and typically provide long term health benefits.
  16. Aretaeus Cappadocia
    I watched my spouse go through shingles before the vaccine was available for "younger" people, so I got the vaccine as soon as I could. It really knocked me down too, especially the second dose. Even with that, if necessary I would take that vaccine every year to avoid getting shingles. Luckily it's a lifetime benefit though.
  17. Aretaeus Cappadocia
    I saw your post and it made me curious so I did a little online research. While I could not find "Theresa Flores" or any human celiac CRISPR studies, I found 2 articles that are perhaps relevant to your questions: 1. "T cell receptor precision editing of regulatory T cells for celiac disease" Mar 2025 (https://www.science.org/doi/10.1126/scitranslmed...
  18. Aretaeus Cappadocia
    A few starter suggestions for gluten-free living: - one of the other responses to you mentioned the Forums. On any page of this website, there is a blue banner near the top of the page with some menu choices. The menu choice "Forums" drops down and gives a selection. One Forum topic is "Gluten-Free Foods, Products, Shopping & Medications", another...
  19. Aretaeus Cappadocia
    I adapted this to be a gluten-free recipe from www.tasteofhome.com/recipes/autumn-pear-bread. Wonderful flavor profile, great texture, fairly easy to make. The almond flavor from the almond flour complements the pear flavor. Ingredients 1 cup almond flour 1 cup sweet rice flour 1 cup millet flour 2 Tablespoons tapioca flour ...
  20. Aretaeus Cappadocia

    Help!!

    Aretaeus Cappadocia commented on Amiah's blog entry in Amiah

    I agree with Trents' reply. In addition ... Your post does not say what you did with your child's diet after the blood test and prior to the endoscopy. Usually the Dr advises a "gluten challenge" prior to the test so that the inflammation is more pronounced and easier to see. On the other hand, if they didn't mention this, you may have reasonably restricted...
  21. Aretaeus Cappadocia
    Good, balanced analysis. I liked the comparison of the different platforms in this context. Fwiw, the same essay largely would work if you substitute any of many contemporary topics. As a moderator of this site, have you stepped back and considered how this site fits into this essay? Personally, I don't think I have enough visibility into the comments...
  22. Aretaeus Cappadocia
    I agree with your post and have had similar experiences. I'm commenting to add the suggestion of also using nutritional yeast as a supplement. It's a rich source of B vitamins and other nutrients, and some brands are further supplemented with additional B12. I sprinkle a modest amount in a variety of savory recipes.
  23. Aretaeus Cappadocia
    "lots of celiacs ... already find it very difficult to afford specifically gluten free products. We here this all the time on this online community. If prices go up more because of increasing regulation, many will not be able to afford it any longer." --> Maybe that itself is a great comment to submit. If you could flesh it out with numbers, facts...
  24. Aretaeus Cappadocia
    I am working on a response to this FDA request for comments on gluten. Part of it will be my suggestions, like yours, but a big part of it will be my collected stories of navigating products with ambiguous gluten disclosures, like your Lubriderm story. I plan to name the brands not to shame them but to give the regulators clear facts they can check and evaluate...
  25. Aretaeus Cappadocia
    You may want to consider getting a food dehydrator for your motorcycle touring. I evaluated getting one but decided against it because my personal business case didn't justify the costs (I occasionally travel by car and food bulk is not as much of an issue). However, if I wanted to travel by motorcycle as often as you I probably would have gotten one.
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