Aretaeus Cappadocia
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Latest Celiac Disease News & Research:
Everything posted by Aretaeus Cappadocia
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I am grateful that I like it. Fwiw, one of my kids didn't like it initially but if I rinse it pretty well there is a flavor that I can't detect that is removed. Once I started rinsing it, everyone in our family likes it. -
one more reference: https://www.webmd.com/diet/foods-high-in-nickel
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Have you ever been tested for allergy/sensitivity to nickel? "Ni-induced clinical manifestations observed in the general population are also frequent among Celiac Disease patients after prolonged gluten-free diet. These patients are often wrongly labeled as Gluten-free Diet Non Responders or affected by Refractory Celiac Disease. Corn-based flours and...
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I was shopping at Costco last week and I saw that their Kirkland quinoa now has a Gluten Free label. This change must have happened in the last couple of months because the last time I bought it it only had the "packaged near wheat" warning.
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Yeah, gotta agree with this. Glad for the focus on gluten-free issues, hopeful that she develops some good recipes/techniques the rest of us can use, worried that the publicity around her "reset" will add to the perception that going gluten free is some kind of optional lifestyle choice, rather than a medical necessity. The point you made that moved...
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Unsteady in my new diagnosis
Aretaeus Cappadocia replied to drjay's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
@drjay in addition to what @trents wrote, I wanted to comment on your statement, "Positive for DQ2 and homozygous for DQB1*02 but negative for DQ8" You don't need DQ2 >and< DQ8 in order to be susceptible to getting celiac. Either one is good enough. DQB1*02 is a specific genetic allele that encodes part of the DQ2 protein. "Homozygous" means... -
@aperlo34 Aside from the thiamine/vitamin B issues raised by the others, your test results show that you have a high level of vitamin A. Humans can accumulate and stores lipid-soluble vitamins (like vitamin) to the point of toxicity, whereas excess water-soluble vitamins tend to get washed out quickly. Your test result is higher than "normal" but lower than...
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McCormick seems to be gluten conscientious. Many of their products are "safe" but you have to read each label. I've purchased a few items from them and I trust that they are safe, but my symptoms are not so acute that I would be able to pinpoint a glutening. https://www.mccormick.com/pages/allergens
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This sent me to my refrigerator to double check. I live in a mixed household and sometimes it's hard to remember which condiments are safe, although on the unsafe ones I tend to write "poop" with a magic marker to help me remember. I don't see any brands listed, but my brand is Huy Fong Foods. The labeling on the bottle is not helpful but the website...
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Different people might have different answers, but for me I don't worry too much about cooking oils and salt. I read the labels to check that there isn't some kind of warning but that's about all. I'm not overly worried about pepper either. I eat a lot of black pepper. I buy Costco Kirkland whole pepper and grind it as I use it. A pre-ground pepper would...
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It took me a couple tries, but I found it. Looks good except it uses oats and I don't eat them any more (sigh). https://blogs.ifas.ufl.edu/polkco/2021/08/25/alternative-recipes-black-bean-brownies/
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I may be wrong, but I think this post originally pointed to a request for input on gluten labeling that closed a couple of days ago. That one was somewhat oriented to issues with oats, barley and rye. There is another RFI at the same link focusing more on cross-contact, with a deadline for comment of 22 Apr 2026. "Requests that the FDA better protect...
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@trents Just clarify, isn't NCGS independent of HLA-DQ2/HLA-DQ8?
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After posting my last response I saw your other thread for the first time and it made me think of something else. Have you considered whole genome sequencing (WGS)? I believe the cost is down to around $500 and at least one vendor is offering a discount during "rare disease month". It would be a long shot but WGS does sometimes uncover a diagnosis...
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Just to clarify on the IgA tests: I was suggesting a follow up test to see if levels have dropped since going gluten free. It's a little early according to the typical schedule but you are dealing with an unusual situation. fwiw, when I went gluten-free, very careful, after 3 months my IgA levels went from 65 and 140 (14.9 was limit) to ~4.5 for both. The...
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Sorry to hear what your family is going through. After 1.5 yr of gluten-free diet, my adult child has improvement but also still complains of some symptoms. It is hard to sort out. I don't have any KO answers for you but a couple of suggestions: - repeat the blood test. If IgA levels are still high, perhaps you haven't given it enough time, and...
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fwiw, I am 1 year in and I am doing ok. It is scary to know there is a widespread risk around you that can be hard to identify where it is. However, whatever you do to avoid gluten, you will be doing better than you were doing before you started trying - celebrate the successes. In the beginning, every action you take is a new experiment with risk of failure...
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"I feel like I'm taking crazy pills because the only time I felt better was when I was on steroids." Nothing crazy about that. Steroids are very powerful and can reset your body (not the best technical jargon, I know). I don't know enough to offer you any answers, but I think that result is significant. If you haven't done so already, I would consult...
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Are you familiar with "Non-celiac gluten sensitivity (NCGS)"? As I understand it, it shows similar symptoms to celiac, but it doesn't involve an autoimmune response. This would be consistent with your symptoms and antibody test results. https://www.chop.edu/conditions-diseases/non-celiac-gluten-sensitivity#:~:text=Although researchers are still learning...
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Prospective CRISPR research
Aretaeus Cappadocia replied to Lotte18's topic in Publications & Publicity
responding to myself one last time. Should have thought of this one sooner. If anyone is interested in knowing about or volunteering for a clinical trial, this is the gold standard resource (the link is preloaded for celiac, but you can change the search parameters): https://clinicaltrials.gov/search?viewType=Card&cond=celiac&aggFilters... -
Prospective CRISPR research
Aretaeus Cappadocia replied to Lotte18's topic in Publications & Publicity
@Lotte18, somehow I missed your post until today. Please don't misunderstand: these trials need more volunteers. They turned me away because I didn't meet their criteria. When a clinical trial gets enough candidates they simply close the enrollment (they don't continue reviewing candidates). fwiw, Phase I trials rarely, if ever, use a placebo arm. ... -
Prospective CRISPR research
Aretaeus Cappadocia replied to Lotte18's topic in Publications & Publicity
Gonna reply to myself here... There don't seem to be many celiac-related clinical trials that are actively recruiting for volunteers. I am aware of the 3 listed directly above, and now a 4th one: DAISY Study Recruiting Now. To be eligible, you need to be 18–75 years of age, have a diagnosis of celiac disease with intestinal damage, and still experience s... -
Really interesting. One comment about your review: my first thought when I read this was "how in the world did an IRB approve this study?" I then read the original and saw that this was primarily a retrospective study. They defined the cohort they wanted, then searched a database of medical records to conduct a retrospective longitudinal study, and for...
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I look forward to hearing about it. In case you didn't know, "Rare Disease" is a regulatory term that is defined, among other things, as affecting fewer than ~200,000 people in the US. It's a category that was established to provide assistance to develop treatments for diseases that might not otherwise be "commercially viable". In addition to opening...
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Celiac is too common to be "rare" under the standard definition. Does this group do anything with Celiac?
