apprehensiveengineer

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About apprehensiveengineer

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  1. @MikeMacKay I'm not 100% sure Jones Soda is gluten-free. They certainly don't advertise it as such (meaning that there's no guarantee that it is). I can't seem to find an ingredient list for anything on their site, but I wouldn't be surprised if some of their flavours contained barley malt (and thus possibly some CC on other flavours?). Barring that, zero calorie pops often use sugar alcohols as sweeteners. These are a common source of GI distress in many people, celiac or otherwise (including me).
  2. @MikeMacKay Last I checked, the dream bar uses gluten-free rice crisp cereal (no barley malt). It does contain a lot of milk ingredients, which might upset your stomach if you have issues with lactose/dairy. You could be ultra sensitive (I am and can't eat most processed gluten-free foods), but I think this product is relatively safe, being that it is sealed and certified. Are you also getting drinks at Starbucks? If so, that would be my first worry. Though many of the drinks they serve are devoid of gluten ingredients, the place is CC nightmare. This is especially true of anything that is not black coffee, since they use the same blenders, frothers etc. If you sit around and watch a coffee place for a bit, you'll probably see some stuff that you won't like - dumping equipment in the sink (full of crumbs) then only rinsing quickly, using rags lying on the crumby counter to wipe down spouts/clean equipment, storing cups/lids below where baked goods are prepared etc. Some independent coffee places even use pasta to stir coffee (WTF). To be fair, Starbucks acknowledges that nothing other than pre-packaged stuff is guaranteed to be gluten-free. I'm not saying this to make you paranoid, just some food for thought on ways that otherwise safe-seeming orders (eg. drinks) could go wrong. To be clear, I do sometimes get coffee/packaged snacks when traveling, but I take a close look at what's happening behind the counter before I do so. If the coffee prep station is far away from the baked goods/bagel prep, I feel much better about it.
  3. apprehensiveengineer

    Keep Getting more bumps 2 weeks after getting glutened

    My family is British/Irish, so I was doomed 😂. Every meal involved some sort of bread/baked good side. RIP cultural event participation. The closest I could get to an answer on relative severity of reactions between the different grains was that the different HLA genes result in the immune system recognizing different parts of the proteins. So, I suppose, depending on which HLA genes a person has, their system may bind more strongly to certain grains in the gluten umbrella. From my limited understanding of the studies I read, it did seem to support the idea that there are sub-types of celiacs. I would think there are also implications about enzymatic-based therapies (ie. enzyme might not render the proteins unrecognizable for some HLA types, especially less common ones). I myself am DQ2.2 homozygous, which is one of the less common genetic combinations (in Northern Europe, at least). Most of the research is done on people who are 2.5/X, or cell cultures derived from people with this genetic combination. I wonder what nuances we might be missing because of this limitation.
  4. apprehensiveengineer

    Keep Getting more bumps 2 weeks after getting glutened

    That's very interesting. I have personally noticed that I seem to be much more sensitive to barley as well. Beer-related CC is the bane of my existence. I stopped drinking beer (which I loved!) long before I was gluten-free because I noticed that I would get tremendously ill every time I drank beer, but not other alcoholic beverages. I did sort of notice that I had more problems when I visited (and ate with) my parents, who are highly bread-centric, but this was not as apparent as the beer connection. I tried to do research on this - I think there could be some commonality between this and the variance in individual reactions to avenin/oats - but it doesn't seem that anyone is interested in this question.
  5. apprehensiveengineer

    Just have anemia, do I need to be gluten-free?

    Of the five celiacs I know who are not super careful/compliant with their diet, all have suffered major life-altering consequences: - 1 had to have part of their intestine removed, spent 6 months in hospital on a liquid-only diet - 1 had to take a year off work due to neurological issues - 1 had to take a year off school due to various symptoms - 2 had to quit elite/olympic level sport due to recurrent bone fractures Symptoms mean nothing. Celiac disease will find you out eventualy if you don't treat it properly. All of the people on my list are under 30.
  6. apprehensiveengineer

    Milk vs Almond Milk

    @vvicin02 Glad to help. Don't feel bad - I didn't know any of this stuff in the beginning either. All the doctor said was "don't eat gluten." Correct in essence, but lacking in some very important details. Unfortunately, this is all most people receive. Initially, I thought that as long as I replaced all the obviously gluten-containing foods from my diet with ones that said they were gluten-free, I would be good. This did help, but I still got sick a lot at random! I didn't know that cross-contamination was a problem in a shared kitchen, or about the nuances in labeling laws (ie. no gluten ingredients doesn't necessarily mean gluten-free!). I didn't know what to say at restaurants, or that most restaurants aren't truly capable of making a celiac-safe meal (even if they think they are). It took me a good 2 years to really nail all the details.
  7. apprehensiveengineer

    Washing my countertops

    I am a young adult who no longer lives at home, but who visits over Christmas/other holidays for short periods. I was not gluten-free until university, and so my case is perhaps a bit similar to your daughter's. It is much less stressful to make the entire home gluten-free(ish) when I am home. My parents care, but it is hard for them to completely recalibrate their behaviour in their own home - despite their best intentions, stuff happens. If you really don't want to convert your whole home temporarily, having a specific procedure (eg. designate a "gluten counter space," wipe down surfaces/handles with paper towel before gluten-free meal prep, separate dishes, NO FLOUR) really helps a lot. Although this sounds very extra, it's actually easier to have separate prep areas/dishes - less need to rewash or clean stuff that way, which is less work. That said, gluten-free need not be expensive if you keep the focus away from replacement/convenience products - I am a grad student (income well below the poverty line) and I manage to spend very little on food. Potatoes, rice, beans, corn are very cheap. My parents will also eat/buy foods that are nominally free of gluten ingredients, but not strictly safe for me to eat (eg. bulk nuts, some candies, some chocolate), so their diet is still much less restricted than mine.
  8. apprehensiveengineer

    Milk vs Almond Milk

    Be cautious about Bob's Red Mill oats... they use optically sorted oats, which is a less reliable method for obtaining gluten-free oats (basically they "pick out" the wheat/barley pieces that might be mixed in, but success may not be 100%). If you google Gluten-Free Watchdog, she has a list of companies that sell/use purity protocol oats (oats grown separate from wheat/barley and kept separate throughout processing). Some celiacs also react to avenin, the protein in oats, and cannot tolerate oats of any kind. Especially if you are newly diagnosed (less than 6 months), you should not be eating oats at all until you fully heal.
  9. apprehensiveengineer

    Milk vs Almond Milk

    You don't need to stay away from milk necessarily. Some people are lactose intolerant, and it is a bit more common celiac disease because of the damage that has occured in your small intestine (where your body makes lactase). Lactose intolerance happens when your body doesn't make the enzyme to break down lactose (a milk sugar). When undigested sugars hit your large intestine, your body doesn't like it and you fart a lot and get cramps. If you have no symptoms from eating milk, you don't have lactose intolerance. Lactose intolerance doesn't cause damage, and has nothing to do with your immune system. Keep drinking the milk - contrary to all the anti-dairy noise out there, it is actually good for you and contains a lot of good stuff! Almond milk is basically vitamin fortified water - better than nothing if you can't hack milk, but not a good an equivalent nutritional substitute. FWIW I myself am lactose intolerant - I can't drink milk without wanting to puke/die, but do eat dairy that is low in lactose such as yogurt, butter, and hard cheeses.
  10. apprehensiveengineer

    Oat Beta Glucan

    Technically, only wheat contains gluten - and only when water is added to it (smaller proteins called gliadin and glutenin bind to form gluten in presence of water). Persons with celiac disease react to prolamins in some grains such as gliadin, hordein (barley), secalin (rye), and possibly avenin (oats). The term "gluten-free" is a bit of a misnomer, but it is much simpler than naming all the individual proteins. Oats are gluten-free because regulatory agencies have decided to define them as such. It is currently a bit unclear as to whether all celiacs react to avenin, and whether or not the extent to which they react to them is a significant concern. Immune cells harvested from celiac patients have been shown to react with avenin, but it is a bit less clear from feeding studies as to whether this poses a danger "in real life." Major studies are either small in sample size or have large "unexplained" drop-out rates, and the resolution of current diagnostic methods may not be sufficient to capture low grade damage that might occur from eating small amounts of oats.
  11. Did your doctors rule out celiac disease definitively? To do so, you need to have negative serology (while eating gluten), negative biopsy (while eating gluten), and negative HLA DQ type. The essential part of NCGS is that is is... non-celiac, ie. celiac disease must be ruled out definitively. Simply lacking a celiac disease diagnosis is not the same as the disease being ruled out - many people lack a celiac diagnosis because they have never been tested while eating gluten, and/or have atypical presentations that are not as reliably picked up by current diagnosis modalities (DH, gluten ataxia). Unfortunately, many doctors aren't very diligent in ruling out celiac disease to an adequate extent, meaning that many who are told they are NCGS could have celiac disease. Some studies estimate ~20%! If you look at the literature on NCGS, it's pretty apparent that it's a non-homogenous patient group - some people with NCGS seem fine as long as they don't eat copious amounts of gluten-containing foods (no CC worries), while others seem to need to be celiac-careful to avoid symptoms. It is my opinion that many of those in the latter category have probably been misdiagnosed, since the evidence for such a scale of immune response is weak at best. Not sure if any of what I've said makes you feel better, but rest assured you're not alone in feeling the way you do. I myself am in the "no man's land" between celiac disease and NCGS, as I was never tested while on a gluten-containing diet (due to incorrect advice from an MD), but have a positive HLA type/many other close family members with AI disease (meaning that it's quite possible that I do have celiac disease). Many people on this forum are in my boat, and I've found good advice here.
  12. apprehensiveengineer

    Fasano Diet discussion

    This is a point that gets overlooked a lot. There is no study that exists that defines 20 ppm as "safe." It's not the gluten concentration that matters. There is nothing special about the number 20. The FDA chose 20 ppm to align with existing EU standards, and because it would strike the correct balance between pleasing companies (stricter standards cost them more) and keeping celiacs healthy. What was studied was the amount of gluten in mg that it takes to make a celiac sick. Fasano et al found that >10 mg per day elicited significant damage in persons with celiac disease. That means that if you are consuming food at 20 ppm, you can eat 500 g of food safely, or 1 kg of food that is 10 ppm (many certification organizations use 10 ppm as a cap). 500 g of food is not very much. If you eat more than 1-2 meals/snacks involving gluten-free alternative products, you are probably eating more than 500 g. If you are eating a ton of gluten-free alternative products, it could easily result in >10 mg gluen/day, especially if some of those products are near 20 ppm.
  13. I do mostly eat potatoes, rice, beans, plantains, some quinoa for carbs. I do eat gluten-free bread, but I only buy from smaller local bakeries. Oats are definitely a minefield at this time. It is a place where commercial interests have outstripped scientific knowledge IMHO - even the most optimistic studies recommend that celiacs eating oats be monitored very closely via bloods/endoscopy to ensure that they are not reacting to them. How many people are aware that this is the case? Not many. Unfortunately, the marketing voices of companies are a lot louder than the voices of scientists/doctors. Aside from being more strict on the GFD, I have found that zinc oxide cream (diaper rash cream) applied topically to affected areas seems to help. Partly, because it acts as a barrier to reduces friction (petroleum jelly base), partly because it helps to kill some of the bacteria (zinc oxide).
  14. No. Lol. If Round-up was a major cause of celiac disease, then there would have been no celiac disease prior to its invention. FYI - organic farming still uses pesticides, many of which are objectively more harmful in the short and long-term than Round-up. Either way, the amount of pesticides that end up on your food is so slight that you would have to eat an inhuman amount of food to actually get a dose that you could prove was harmful. https://geneticliteracyproject.org/2017/03/10/buying-organic-food-to-avoid-pesticides-you-may-want-to-reconsider/ https://gmoanswers.com/ultimate-gluten-free-does-glyphosate-cause-celiac-disease-actually-no
  15. I have HS. It started around the same time as the DH lesion started (early 20s), and has improved upon the GFD. When I poison myself, I get the rash and I get armpit abscesses. Always together. Since being on a GFD, I have not had to have any abscesses drained. I actually suspect that DH and HS are the same thing - several studies have indicated that avoidance of wheat and yeast (so, basically a GFD), and perhaps dairy (contains iodine, which flares DH) improve HS symptoms. Like DH, HS is also aggravated by friction from clothing. All seems a bit suggestive to me... Anyways, how strict are you with the GFD? I found that I did not get any relief until I stopped eating anything I did not prepare myself (including restaurants, meals made by family), and stopped eating processed gluten-free replacement products (breads, baked goods, pastas, flours). No oats, point blank, either. https://www.sciencedirect.com/science/article/pii/S0039606013001657 https://www.researchgate.net/profile/Claudio_Cannistra/publication/309267726_Interest_of_Brewer's_Yeast-Exclusion_Diet_in_the_Management_of_Hidradenitis_Suppurativa/links/59ba9993aca2724161919c4f/Interest-of-Brewers-Yeast-Exclusion-Diet-in-the-Management-of-Hidradenitis-Suppurativa.pdf https://onlinelibrary.wiley.com/doi/pdf/10.1002/bjs.6569 (this last one has a brief comment about similarities between HS and DH in association with IBD/celiac damage)