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apprehensiveengineer

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apprehensiveengineer last won the day on March 16 2019

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  1. Homeopathy is a placebo, and doesn't do anything. Anyone who tells you otherwise is a quack making a buck off of it. It is quite literally "active ingredients" (I use liberally - none of the active ingredients have any plausible mechanism of action) diluted to such an extent that there is not one single molecule of the active substance remaining in whatever pill you take: https://www.mcgill.ca/oss/article/homeopathy/homeopathy-delusion-through-dilution

    It is unfortunate that pseudoscience practitioners prey upon people with chronic illnesses, for whom there is often not a good evidence-based medical treatment, or for which the treatment is difficult (ie. strict GFD). Don't waste your life waiting for a magic carpet because the bus is late. Until a proven cure or treatment becomes available, a serious GFD is all you can do.

  2. @PaigeyPants

    It really depends what province/region you are located in as grocery stores here are rebranded regionally, and have different brand loyalties in different regions. I've done grocery shopping in a lot of provinces, and you have to know what's happening more locally to be sure. As a general rule, most Loblaws-owned grocery stores will have Unico beans (No Frills, Superstore, Independent) though.

    Since you mention London Drugs, I assume you're in BC. If so, you should have luck at Safeway, Save-On-Foods, IGA as well. Whole Foods and similar alternative/hipstery places will be a bust since they don't sell blue collar foods.

    edit: the washing the beans thing is legit - GFWD did a report on this, in which she showed that washing dry beans did reduce their gluten content. However, if your beans are severely contaminated (or you find errant grains in them), this might not be enough. I avoid lentils (higher risk), and still wash dry beans and rice no matter how they are labelled (good practice regardless of whether you are celiac).

  3. On 2/23/2019 at 8:09 PM, PaigeyPants said:

    We have always eaten a lot of dried chickpeas, beans etc.

    There have always been a few which included the 'may contain traces of wheat' disclaimer but lately it seems like every bag of beans I look at says it may contain wheat. 

    The Unico canned beans have the CCA gluten free symbol on them. I don't understand how they can access safe beans but I can't!! 

    Does anyone have a source for safe dried beans in Canada? Lentils?

    Cheers

    Hi, I'm in Canada and had a lot of trouble finding beans initially. I use Unico canned beans, and their other products that are CCA certified (canned tomatoes, pizza sauce etc.). I am careful to look for the symbol as we sometimes get cans manufactured at their US plants, which do not have it.

    Unico does dried beans as well that are certified. There is another major brand that has their dried beans certified, but the name escapes me at present. One or the other is usually available at most major grocery retailers. 

  4. This is perhaps not helpful to you specifically, but I eat Kraft peanut butter (not available in the US in stores, but the most ubiquitous brand in Canada). It is not labelled gluten-free as Kraft does not test incoming ingredients. Normally I don't mess around with packaged products that don't claim to be gluten-free, but this is my only exception.

    I've been burned by various other brands of peanut butter, some of which did indeed claim to be gluten-free.

     

  5. There was a point where I felt like you do, like I was going crazy being contaminated by everything. However, it actually turned out to be issues with some of the foods I was eating. All of these foods were single-ingredient foods that should be low risk in theory. However, anything can be made on a shared line, and may contain warnings are optional. Aside from investigating other issues, you might think very carefully about every food ingredient you use, and perhaps contact manufacturers if you can't find clear allergen info on the company website.

    While I wouldn't go out of my way to touch gluten, being around it is fine as long as you wash your hands before touching your face or food, and don't contaminate your utensils/plates with hit. I give the bakery section a wide berth, but most places are set up such that the actual mixing (and loose flour) occurs separate from the customer area if they even bake from scratch at all (a lot of places get frozen dough).

  6. @Alaskaguy

    With regard to the timing, I think that everyone is a bit different! I used to have a shorter time to onset when I was first diagnosed (within 24h). As time has gone on, and I've glutened myself less and less, I have noticed that the time gets a bit longer.  Recent history seems to matter a bit too - if I've been glutened recently and then get glutened again, the rash will show up faster on the second round. For example, in the last 3 weeks I got slightly glutened by inadvertent drywall dust exposure at work (ugh), and then got glutened by a new food item that I introduced last weekend. The second time around, I was itchy/crusty/gross about a day later.

  7. @Alaskaguy

    Almost 4 years. The first 1.5 years or so I was not very careful about CC and got glutened a lot.

    I'm in my late 20s now, but probably ate more gluten in the first 2 decades of my life than most people could dream of ingesting in 40 - British family (everything is served with bread, bread is a snackfood) + endurance athlete (high carb intake, >4000 calories a day total) + big-time beer enthusiast. I probably have more antibodies buried under my skin than would be expected.

    I think my GI symptoms are a bit less severe than the typical celiac. Unless I get glutened very badly, I typically just get steatorrhea, or weird poops (and usually more frequent - >3x per day as opposed to 1-2). I get the classic diarrhea maybe 1-2 times per year. If I had no other symptoms, I might conclude that I almost never get glutened (and would perhaps try to pass off feeling terrible at "random" on other things)!

    I am however, very sensitive - if I get a rash outbreak, it is almost always preceded by a "weird stomach day." Timing varies, but right now it seems to be about 2-3 days to onset, peak rash about 5 days. Sometimes the GI issues are so slight that I'm not sure... until the rash flares. I had chronic stomach issues as a kid/teen that would have me on the BRAT diet for months at a time... then fade away randomly. The rash appearing when I was ~21-22 is what made me realize there had to be something serious wrong with me.

     

     

     

  8. For what it's worth, I've noticed that if it's just iodine I will not get any other symptoms. In addition to the rash, I typically get GI symptoms, fatigue, and sometimes joint swelling when I ingest gluten.

    I don't typically eat seafood or stuff with lots of iodized salt, but sometimes I do on special occasions knowing that there will be some relatively minor consequences. Typically this is because I am traveling - canned tuna, salty snacks, jerky etc. are often the only nutritionally balanced things available that I am sure are safe.

    An interesting question is whether or not the flare-up is causing a clinically worrisome amount of cellular damage (ie. potentially risking cancer, other AI diseases). I'd guess that on some level it is bad, but probably less bad than eating gluten. It does seem that increased iodine intake can increase your risk of Hashimoto's, which is a disease that people with DH seem to be more at risk for than regular celiacs. The pathway for this isn't clear though... but on the off-chance, I try to avoid ingesting iodine in amounts that causes a noticeable flair unless it is truly unavoidable as I have several close relatives who have Hashimoto's.

  9. Teff is fine as long as it is marked gluten-free or in a gluten-free product. It's common in Ethiopian cuisine (used to make a savoury crepe-like thing called injera). Sometimes it is cut with wheat to extend it as teff is expensive (watch out in restaurants serving injera!). Since it's a grass that kind of look similar to wheat and might be processed/packaged on shared lines, it's important to ensure it's labelled gluten-free.

    If you're doing the Fasano diet, it's a no. I did the Fasano for a bit (post-oat CC revelation), and it helped. The gluten-free bread I now eat has teff in it as part of its flour mix.

  10. Just now, Alaskaguy said:

    AppEng, that is good to know about your experience with oats, although I will be absolutely crestfallen if it turns out that I cannot handle even the purity protocol oats (which, in my initial enthusiasm, I ordered more than 100 lbs of directly from the grower in Wyoming last year!).  I LOVE the flavor of oats, and all through last spring and summer, oats were my go-to breakfast, as well as my standby flour of choice for things like corn bread and banana bread.  But yes, while my symptoms did overall subside (not disappear) in those first six or seven months on the gluten-free diet, they did noticeably flare-up frequently, and it was largely for that reason that I (mostly) cut out the oats, and also dairy products and teff, back around September of 2018.  And then in the last few months, I have tried using both oats and teff a number of times, and perhaps not coincidentally, my DH has flared-up more and more.

    Oh, that is going to suck if I can't have ANY oats!

    Lol! I sympathize - I was greatly disappointed myself! 2010-2015, gluten-eating me I ate oats every single day for lunch more or less. They are convenient because you can throw 'em in a container dry, and then find somewhere with hot water (or a tap and microwave) and hey presto! decent, cheap, nutritious meal.

    I'd recommend not eating them for a while, see if that changes anything. Then try adding them back in. Purity's the way to go if you can tolerate oats... definitely wouldn't mess with most of the oat-containing gluten-free products on the shelves. In some ways, not being able to eat oats makes things a bit simpler... I don't have to worry about purity/sorted because it's all bad to me. Downside is that almost all companies use oats now, meaning that few can be considered non-CC'd. Kinnikinnick is the only major bread/baked goods brand that explicitly states it doesn't mess with oats. I've also had good luck with more local/regional companies that are celiac-focused - lots of oat skeptics in more celiac-focused circles.

  11. 3 hours ago, squirmingitch said:

    I thought & I thought & I thought and then one day it dawned on me that there might be cc with oats as far as the bread went. I called the company & sure enough.

    This was absolutely the breakthrough that helped me get better.

    I was sloppy with the GFD in my first year because I didn't know better, and still kept getting sick a lot. I did some research, and complied with what most specialists would agree is a competent GFD for a celiac. I still was getting sick - not as much, but my iron and other blood values were not good. The rash was relentless. It was unspeakably frustrating to feel like I was doing everything right, but was still so messed up.

    I didn't think of oat contamination until I ate got a bad batch of corn chips. One of my corn chips was grey, and tasted weird. I called the company (thinking it might have been wheat), and it turns out that my bag was made in a gluten-free facility - on the same line as gluten-free granola/oats. So my weird chip was almost certainly an oat chip. That got me thinking - chances are these chips I've been eating everyday are always a little contaminated with gluten-free oats. I stopped eating them, as well as any other gluten-free product made by a company that does oats.

    It made such a huge difference. It is a great worry to me thinking about how many people don't realize this is happening to them. I know for sure that I react to oats because I tested myself with purity protocol oats under the Canadian Celiac Assoc. protocol - I couldn't make it past day 2, and then I was bedridden for about 10 days. That is the same reaction I would have had to drinking a Guinness, so it makes sense that foods CC'd with oats would be problematic. No one wants to acknowledge that this might be a problem because it's unpopular, however. But imagine if there was a type of peanut that was not tolerated by 20% of peanut allergic people... do you think that would be allowed in peanut-free products? Hell no, it wouldn't because society takes peanut allergies seriously, unlike celiac disease. 

  12. I totally get the possibility of being glutened in a lunchroom (it makes me a bit nervous), but it is possible to not get glutened from this environment if you have a protocol. I eat in a university cafeteria most days (tables crumby, never cleaned), and often eat at other similar venues while traveling. I think that with celiac there is a danger of social isolation - I've been there, and so I think it's worth it to make changes that allow you to interact with other people. Though some situations are a no-go (bakeries, breweries etc.), but you can sit in most places with other people and eat without getting sick - unless people are spitting and spilling their food everywhere, unlikely that it gets inside you unless you somehow contaminate your hands/utensils.

    Here are some things you can do to avoid that:

    1. Bring sanitary wipes to clean the surface of the table you will be placing your food containers on. This should take care of obvious crumbs. Even after you have wiped it, consider the table a "dirty zone." Anything that touches it is dead to you and does not go in your mouth. If the sanitary wipe thing makes you feel weird, place a paper towel or something under your container

    2. Wash your hands before eating and do not touch ANYTHING with your hands other than your food. No phone, no buttons/handles, no table.

    3. If you are very worried about the space, avoid foods that you eat by hand. Utensils only. I have a set of lunch cutlery (Systema) that comes in its own box, so it doesn't get dirty even if you throw it in the bottom of a bag.

  13. Depends on how sustained the relationship is. Are they likely to ever get you a gift again, or is this a one-time thing (eg. goodbye gift)? If you'll not see them again, don't trouble yourself and give it away (I try for donation/food bank if possible).

    If it's someone you'll be interacting with again in the future who is likely to see you in food situations, it is best to be honest right off the bat. I usually tell people that it's more complicated than they think because of the way our labeling laws are, and because they would have to buy new cookware and unopened packages. This usually turns people off, but sometimes people don't believe that this could be true for whatever reason. Then I emphasize that I don't even let my parents cook for me at home unless I supervise them, because it is easy to make a very small mistake that will hurt me a lot. That usually helps diffuse them feeling insulted about my not trusting them.

     

  14. I think that soy "intolerance" is a bit of an urban legend/very much overstated for people with celiac disease. Soy is often cross-contamined with gluten (like other legumes), or implemented in a manner that does contain gluten (soy sauce), which I think leads to many people coming to the incorrect conclusion that they have a soy intolerance. If you're buying soy products processed in Asia that are not labelled gluten-free (a good chunk of such products), then I'd hazard that your problem is gluten, not soy.

    I am allergic to soy. My mouth and throat get itchy nearly immediately upon ingestion of soy, as well as hives. My reaction is mostly limited to this, and I have never had a problem with "may contain soy" products. I also eat products containing soy lecithin and soybean oil, as those do not contain any soy protein (theoretically).

  15. I've had a lot of trouble with tea... I think the issue is that many herbal teas contain spices/flavourings which may be CC'd, and that most teas come from Asia where there is a bit less allergen awareness/less likely to have allergen management plans in factories (shared lines, some teas contain barley). I think the tea bag thing is a bit of a myth - wheat paste wouldn't work too well in boiling water.

    I've never seen any gluten-free labelled teas in any store I shop at, unfortunately. Prominent tea brands have had gluten recalls (eg: https://foodpoisoningbulletin.com/2016/celestial-seasonings-tea-recalled-for-undeclared-barley/?fbclid=IwAR3c-6hghabOXc0Nf4s5YPmgiQE_fNbW0b5dAkIJquertlu92sMbgwKkS9Y ). Based on my experiences and the recalls I've seen, I wouldn't buy a tea that wasn't labelled. I stick with coffee (don't worry about labeling, but avoid flavoured and store brands), and hot chocolate (labelled gluten-free).

     

  16. @Nikki2777

    I wouldn't necessarily worry about it too much. For me, the issue was isolated to college-y type bars where everything is drenched with spilled beer. I make a bit of a snap judgement about a place by looking at the bar to see what's going on. If stuff looks clean, glasses are stored in a way that makes it unlikely for them to get contaminated, etc. then it may be fine.

    I do the same with coffee places. Some places (ahem, Tim Hortons) store their cups, and other coffee-making stuff below their bread or on the same counter (often touching...). Some places use visibly breadcrumb-y cloths to wipe down spouts, carafes etc. Some even have their bakeries in the customer seating area... (wtf please stop this trend!). Never had an issue with Starbucks black coffee, however.

  17. Yes, that is exactly how it feels. No one wants to deal with patients who have ambiguous/complicated conditions because it is not satisfying and hard to know how to help them.

    I don't actually think DH is all that rare - I think it is just not something that is not diagnosed often, which makes it seem rare. Many confirmed celiacs I have heard from (online and irl) have said that they get an itchy rash when glutened. They already have a diagnosis, and know they need to be gluten-free, so little incentive for them to get a biopsy unless they want Dapsone/prescription intervention. Lots of folks like me, who are very sure they have DH, but who can't find a clinician who will take it seriously.

    I personally don't use NCGS as I do not feel that this is factually correct description. Non-celiac implies that it there is reasonable proof that I do not have celiac disease. The only way to do this for someone already on a GFD would be to do a genetic screening, and find that the person does not have any of the genes associated with celiac. This is not the case for me.

    I also worry that because there isn't much evidence to suggest that NCGS is an immune disorder (if not, CC doesn't matter) or even related to gluten (maybe FODMAPs, fructans, other components of gluten-containing grains), that I may not get treated properly in medical/food situations. Aside from taking my gluten-free requests seriously, there's a lot more follow-up for someone with an autoimmune disease. This is important to me as I have many close relatives with T1D and Hashimoto's, as well as serious consequences (cancer! Parkinson's disease!) from these illnesses.  

  18. I tried to pursue a formal diagnosis while on a GFD (no chance of me doing a challenge - I would have been so sick that I would have had to drop out of school on the other side of the country from home!). I knew I was still getting CC'd a bit (rash had not gone away completely), so I was hoping that this might be enough to elicit a positive test result.

    I had an endoscope/duodenal biopsy done, with negative results (as one might imagine). The dermatologist I saw was convinced that it couldn't be DH because "it didn't look like in the textbook" and "didn't appear exclusively on my elbows and knees." Not sure what textbook(s) she read, but all the ones I've seen seem to indicate that appearance is not uniform between patients, and that the most common sites are the buttocks and back, which is where my rash appears primarily. In medicine, DH is a "rare" disease, so even some specialists don't necessarily know much.

    She said it was acne and recommended me to use skin products/routines I was already using (lol). I probably should have been a bit more argumentative about it, but I figured she didn't know enough about the condition to be of much use with diagnosis anyways. I've more or less given up at this point, and will await the day science invents a diagnostic test that is reliable on a GFD.

    From what you describe, it seems pretty clear that avoiding gluten makes you better. The million dollar question is whether or not someone in your case (or mine) needs to live their life to the celiac standard (ie. take things very seriously and avoid CC very carefully). Being very strict does have a social and health burden, but if you do actually have celiac being more lenient will harm you (even if you don't have noticeable symptoms). Tough situation to be in.

    For me, the answer is easy - if I am not super careful/strict, I am miserably unwell. I describe myself as having celiac/DH, but will explain on a need-to-know basis the more complicated state of my diagnosis (or lack thereof) to healthcare practitioners.

     

     

     

     

     

  19. I have found zinc oxide and epsom salts helpful as well. I find that they dry out the lesions, which seems to speed up healing a bit. I also find that the lesions that I pick at are prone to getting infected (fingernails are dirty!), and that both of those topical treatments seem to mitigate that a bit.

    Sweating also causes me pure misery during an active outbreak, especially if sweaty clothing starts rubbing against my skin. This is a bit hard to avoid in the summer as I am an athlete. Getting out of my sweaty clothes and showering immediately seems to help minimize issues.

  20. As an aside, Life Brand always says somewhere on the bottle which company/factory they outsourced to for manufacturing. Many of their OTC medications that I have come across are made by Apotex, which says it does not use gluten in its factory.

    These meds are not labelled gluten-free (unlike some of the vitamins/minerals, made by a different company/factory), but likely only because Apotex does not test for gluten. I had a nasty cold/flu a few weeks back, and spent a long time in the pharmacy Google sleuthing different meds - this was the best I was going to get. As far as I can tell, I had no gluten problems with their ibuprofen.

    Wish that regulatory agencies would make it easier for people with celiac/allergies (and pharmacists!) to determine if their meds were safe. Having to decipher/navigate company websites on your phone in a store is annoying at best, but even worse when you feel sick.

    http://www1.apotex.com/us/products/allergen-information

  21. Benadryl and other allergy medications won't help much unless you are allergic to wheat. Celiac/DH is a different immune system pathway, and so allergy meds won't affect it much. Benadryl might feel like it helps because it knock you out (hard to feel bad if you're passed out), but probably not something you want to be falling back on.

    I'm a little skeptical on the gluten enzymes as well. I am aware that some clinical trials have showed that certain formulations can "neutralize" small amounts of ingested gluten (eg. CC), but I think that once you start having obvious symptoms it's too late. If it's something like OP described (noticing something iffy while you're eating it), then taking enzymes might help though.

    Lots of fluids, easily digested/bland foods, and sleep is a sure bet, though.

     

     

  22. 1 hour ago, disgruntledceliac said:

    Thanks all for your responses. I tried some locally produced ciders and came out a-okay. It was nice. I'm not a big drinker, but having my first couple drinks in over six months was a nice change of pace during the holidays.

     

    I have some Glutenberg that I was gifted. I've avoided drinking it because it is made from millet, which is prohibited while on the Fasano diet. I'm generally adhering to the Fasano diet as my base diet for now, while expanding into other foods to see how I react. (So far so good.) After six months of following the Fasano diet should I be okay to try a Glutenberg?

    That's good to hear! I have had good luck with small-time local ciders. I always choose ones that say they are gluten-free on the label - most do in Canada these days it seems, which is nice.

    I'd say you should feel pretty confident about the Glutenberg. They test their products at an independent lab and don't put it out unless the result is below the detection limit: https://glutenberg.ca/en/faq

    I've not had too many problems with adding back in products with non-rice gluten-free grains. For me it seems, the company is more important. For me, a big break-through was realizing that I was probably getting dinged a little from companies that produce gluten-free oats alongside gluten-free products that do not contain oats. I cannot tolerate oats at all, but never thought about this possibility much until I ate a "100% yellow corn chip" that was grey-ish and tasted like oat cakes. The company confirmed that my package had been manufactured in their gluten-free factory, and that they make cereals/granola on the same lines as their corn chips, meaning that my weird chip was likely some oat run leftover. Boo.

    Anyways... Glutenberg is one of the few companies I buy grain-based things from. I drink a lot of their beer, too. The other is Kinnikinnick (bread, mixes, baked goods). They make a specific statement that they don't use oats.

  23. On 12/20/2018 at 6:40 PM, disgruntledceliac said:

    Hi folks,

    Been on the Fasano Diet for close to six months. Feeling so much better, and my DH finally went away.

    With the festive season coming up I'd like to know if there are any alcoholic beverages safe for somebody following the Fasano Diet. Most gluten-free beers I know of contain millet, which isn't okay under this diet.

    How about ciders, gin, and vodka? Are they ever safe? Any tips?

    Hey. I feel this post.

    I am quite sensitive, and am still on a more-or-less Fasano diet. I did the official version (plus whole bean coffee, plus wine), and eventually started adding in additional gluten-free foods as tolerated.

    Personally, I have done ok with almost all wines, gluten-free labelled cider, and gluten-free (not removed!) beers from reputable brands. Some gluten-free beers made by smaller companies that also make "real" beer use shared equipment, and some use oats, so I avoid those. For beer, I stick with Glutenberg (inexpensive, widely available, true taste), but Ghostfish is amazing as well if that's available where you are. No problems with those brands.

    I'm still a bit apprehensive about distilled alcohols. I understand (and have performed!) distillation, but know that some brands add flavourings etc. post-distillation, or share equipment/have CC risk. As such, I avoid distilled alcohols unless they are willing to claim that they are gluten-free. This goes for food as well (since distilled alcohol/vinegar can appear in food). To be honest, I don't really like spirits, but I think that Tito's (vodka) would be a good option.

     

  24. @cyclinglady

    I grew up in an agricultural area, but had not been back since being gluten-free except during the winter/spring. A lot of our recreation trails go through crop fields. Mostly corn and soy, but still quite a bit of wheat/barley/oats. I used to joke that it didn't worry me too much, since the only problem would be if the field was being harvested at the precise time I was using the trail, which would be a very improbable.

    Then that actually happened (what are the odds?!). It might have been ok, except the combine was doing the row directly beside the trail and literally raining grain dust on the trail. I learned that a combine harvester kicks up a lot of grain dust over a pretty wide radius that day!

    Luckily, I noticed quickly, used my shirt as a face mask and was able to take an alternate route, and rinsed out my mouth and nose as soon as I got home. Still got glutened a bit I think, though. Not sure how I would have fared had I been in a car driving past... probably fine, assuming one turned the A/C on (so air recirculates)?

  25. Just now, moleface said:

    Yeah, I considered doing that, but I haven't gotten around to it.

    I feel like one call wouldn't make much of a difference, and I'd be complaining to an underpaid customer service representative who has no control over any of this.

    Plus even though I know my issue is legitimate, I know there's a good chance the rep would just be rolling their eyes at the fad dieter who thinks malt vinegar powder hurt them.

    Still though, I was shocked to find that Kroger was blatantly breaking the law like that. Omission got taken to court over this and had to change the label on their beer to "gluten reduced", even though it typically only tests at 10ppm. That stuff gives me a terrible reaction too.

     

     

    If everyone had that attitude, there would be no gluten-free regulations at all! Other people have complained, and once complaints build up, change can happen... and if it doesn't, I'd rather say I tried to make things better for myself and others. Advocacy for other medical conditions and disabilities (eg. wheelchair users) has only been successful because patients and their families refuse to accept the status quo.

    Recently, I spent some time dealing with regulators and a grocery chain about how they were advertising pre-packaged spelt flour and regular couscous as gluten-free. I contacted the company initially (privately), and they gave me some wishy-washy answer but didn't do anything about it. I went up the chain to my country's regulatory agencies, and at each stage explained why it was an important problem - initially they didn't get it either, but I spent the time to make sure they did. I also called out the company publicly on social media. Long story short, the grocery store chain fixed the problem. I think this was important because even though *I* know spelt is not gluten-free, and all celiacs should know that, non-celiacs who buy or make food for celiacs may not be aware of this and make someone sick. I also think that when the rules are broken and not fixed, it sets a precedent that it does not matter.

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