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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

apprehensiveengineer

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About apprehensiveengineer

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  1. Biopsy result?

    I've been told a lot of things over the years... from allergic dermatitis, to "sensitive skin" to ???? to acne. I have tried to no avail to get the skin biopsy, so take my statements with a grain of salt. I am fairly confident (as was the GI I saw recently) that I have DH as my outbreaks are always directly linked to GI distress from gluten ingestion, and come in discrete "batches" as opposed to continuously, as one might expect for the other conditions I've been purported to have. Though there is some variability in the timeline, I will get GI issues within a couple of hours of eating something bad and a couple of days later the rash breaks through the top layer of my skin. It always hits the exact same regions, and I can usually tell where it's going to show up beforehand. It will take several weeks to stop bleeding/crusting and then a purple mark will appear on the healed skin for a few months. The treatments for the various other things I've been told it is are categorically useless or irritate it further. The only thing that has helped is a very strict version of the GFD (I essentially eat no processed foods) and avoidance of super high iodine foods (seafood). I think in my case, the thing that has stumped all the doctors when I've suggested that it might be DH is that it isn't "textbook" in the sense that it isn't restricted to my stomach and elbows. Ironically, I have read a few dermatology textbooks and they all said that DH was highly variable in appearance and could appear almost anywhere, and that it commonly appears on extensor surfaces such as the elbows because these are high friction areas - the rash appears where the skin gets microdamaged and irritated. Most of them also cited locations such as the shoulders, back, buttocks and scalp as very common locations for the rash. I guess the silver lining is that you don't "need" dapsone to fix the problem if it actually is DH, just a super strict GFD. But... I understand the frustration. Hope this helps?
  2. swimming pool and chlorine

    Former lifeguard and competitive swimmer here. There could be some potential issues, but I think it's pretty unlikely. Here's why I think that: 1. The water volume in a standard 25m pool is enormous (hundreds of thousands of liters). Assuming there are people swimming in the pool, any hot spots are likely to get dissipated pretty fast, so you'd have to swallow a lot of water to get a serious gluten hit. 2. By law (at least in Canada), the water inflow and outflow rates must be such that the volume of water that makes up the pool must be replaced every 24 hours in public pools. There are always some dust bunnies, bandaids and whatnot trapped in the corners at the bottom of the pool, but the main volume you're interacting with gets replaced regularly, so no build-up. Public pools are also vacuumed on a regular basis. For cleaning agents, typically on bleach and baking soda are used in my experience. Private pools are another story and there no guarantees. 3. Most public pools prohibit food on deck due to public health regulations and/or wanting to avoid cleaning up messes. This limits potential sources of gluten to personal care products on other people's skin. Considering the volume of a pool, I'm having trouble imagining this resulting in a significant exposure, but I have also swam in packed outdoor pools that taste like sunblock, so who knows. I would definitely worry if people were eating hot dogs or shotgunning beers in the pool though (definitely a thing at backyard pool parties). 4. Pool chlorine can be either tablet based, liquid based or gas based depending on the pool. Either way, it is bleach-based (sometimes literal bleach gets dumped in smaller volume bodies like hot tubs when the chlorine is off). The pool I worked at, which was newer used liquid injection, and I would imagine this is true of most newer facilities (gas is undesirable as it can leak and kill people because it is odourless - some older pools still have this set-up though). Tablets are more common in backyard pools, and it's possible that these might contain gluten in some form (I have no idea and have never checked). For reference, the concentration of chlorine in a swimming pool should be between 0.5-5 ppm, depending on the pool temperature and your region (lower for colder pools, higher for hot tubs). So, I guess my opinion would be that a public pool is most likely pretty safe from a gluten perspective. Chlorine (or rather, the volatile gases resulting from the reaction of chlorine with biological waste in the pool) is an irritant though - occupational asthma rates in lifeguards and swimmers is quite high. Some people are more sensitive to this than others. My dad cannot swim anymore because he becomes ill for a week with severe upper respiratory symptoms (open water swimming is ok). I get similar, but less severe symptoms (part of the reason I don't swim anymore, sadly). Not sure what symptoms you experienced, but something to consider. http://www.ncceh.ca/documents/practice-scenario/pool-chlorination-and-closure-guidelines
  3. Hey, So I ran collegiate track and cross-country and trained at a high level while undiagnosed. Had I not been an elite level athlete, I do not think I would have been so insistent that there was something wrong with me. I suffered many stress fractures and had a lot of problems with anemia, but also had a lot of soft tissue injuries as well (herniated lumbar disc, achilles tear, plantar fasciitis, ITBS to name a few). Not to scare you, but the two years since diagnosis have been a rollercoaster for me in terms of training - I have found myself in the best shape of my life, but I have also found myself so sick and/or injured that I have trouble walking to the bus stop (sometimes within weeks of each other!). In sport medicine/exercise physiology, the newer school of thought on injuries is that they are not purely a product of biomechanical problems, but rather energy balance problems. Essentially, if what you're doing physically exceeds your body's capacity to repair it or compensate for it, you will become injured in the area that is your weakest point biomechanically-speaking. This can come about from both overtraining or poor nutritional status. In a healthy person, poor nutritional status is usually a case of disordered eating/not fueling correctly for sports, but for a celiac things are more complicated since you have a fundamental problem with nutrient absorption and a necessarily restricted diet, all of which can lead to poor nutritional status. Unfortunately, the spheres of knowledge for celiac disease and sports physiology do not overlap much in healthcare. Others have given you good advice about the medical side of things - get your vitamin and mineral levels checked. I will offer you that I have had a lot of minor/insidious injury problems in the last two years, mostly aligned with periods of unwellness. The other thing I suspect played into my issues is that I suddenly saw a significant and unprecedented increase in fitness a few months post-diagnosis. Although I was very careful to try not to increase my training load, inevitably I did so unintentionally - without trying harder, I was just much faster because my body was not longer spending most of its energy/time on whatever autoimmune nonsense. To most this speed increase might have been trivial, but when you magnify to high mileage or training loads, minor changes matter. I imagine that on a cellular, internal level, my body was not phased too much, but my skeletal system was not prepared for this bump up, and couldn't repair itself and so I became injured. My advice would be keep at physio. Although nutrition does play into your injury status, fixing that alone won't likely cure your body's ails once you already have an injury.
  4. Different types of Soy ingredients

    I have a true soy allergy (mouth and throat begin to itch immediately upon ingestion, positive skin prick test). I personally avoid soy lecithin, although I know that it should not contain any protein, which is the part that people with allergies react to. I don't worry about soybean oil (which can be labelled as vegetable oil in Canada) as much, though I avoid where possible. To be honest though, the ingredient that gives me the most chagrin is the dreaded "natural flavours." I stay away from it even in gluten-free labelled products unless I specific disclaimer is made, which is a biiig bummer.
  5. I doubt they do any testing (never contacted them specifically though). I've never ordered from Edison, but had considered it before finding success with this brand. Another one that I've seen that's labelled gluten-free in Canada is San Remo (organic varieties only). Not sure if they test either, but had good results with their stuff too - it's just really expensive. That said, I would suspect that the lack of shared lines for Western Rice Mills is a big improvement over the other options available in my area, which are for sure packed on the same lines as barley, couscous etc. Since their products are all from the USA/Canada, I'd imagine that pre-processing CC is likely - whether it's worse than misc. beans from Asia, I have no idea though. I do wash and pick through my stuff before I cook it as a precaution, though I'll admit that I doubt that this does much if there is any serious contamination.
  6. Distilled Vinegar

    I personally have had problems with store brand white distilled vinegar, but not pure distilled alcoholic spirits. I noticed this as I used a diluted cheap vinegar as a cleaning agent (which I put in a spray bottle) and would always get sick after cleaning - except when I wore a mask and gloves. I understand very well that from a theoretical perspective, proteins cannot make it into the final product of a distilled product as I have worked in a chemistry lab and taken a number of university-level chemistry lab courses. So yes, in theory, distilled vinegar is perfectly safe - but my experience has demonstrated to me that you cannot necessarily assume ideal, theoretic care from manufacturers, who are not necessarily thinking about the celiac consumer. I would suspect that the problem that some (including myself) experience with such products is that there imight be some CC to the "after" distilled product - perhaps a shared line/vat or perhaps that the raw source ingredients (which could include wheat) are not adequately separate from the finished product during production. For vinegars, I always go for apple or white wine vinegar, and avoid store/cheap brands. Vinegar is still super cheap even if you buy a "fancy" brand, so I feel that the slight cost increase is worth it in this case. In the case of alcoholic spirits (not your question, but still relevant to the topic), it's also possible for post-processing ingredients (flavour, mash) to be added back that could contain gluten. I personally avoid all alcohols that are not wine or certified gluten-free beer/cider, because the regulations about what ingredients can be used is very tight for those products, and they are less likely to be produced in shared facilities. That said, I would not criticize anyone for being more expansive in the area of vinegar or distilled alcohol - you must find your balance point.
  7. I had given up on beans for a bit, as I had problems with most brands of canned beans where I live (in Canada it's typically just store brand or other budget brands with warnings). I've since switched to dry beans, and had good luck with Western Rice Mills as they only process rice, quinoa and beans in their plant. AFAIK their stuff is generally sourced in the USA or Canada. I don't know how available their products are outside of my immediate area, as it is a local company in my area. Their products are little more expensive than average, but not excessively so - and all are labelled gluten-free. http://www.westernricemills.com/products
  8. Hashimoto's symptoms - dietary iodine?

    I'm going to guess the additive effect of a few months of mystery CC glutenings (since resolved), plus heavy training load. The last time I had my antibodies/iron checked in Feb 2016, both were good. Since diagnosis to that point, I'd been taking iron supplements only sporadically, but stopped altogether at that point as my ferritin was quite high (hemochromatosis runs in my family, so some concern about taking too much iron). Unfortunately, my DH is only speculative - I've seen a dermatologist in an attempt to get it biopsied/prescribed Dapsone, but she was convinced it had to be acne as it "did not look exactly like in her textbook." My protestations that this was because it she was looking at the remains of a rash that I'd picked the heck out of were sadly ignored. I do have a GI appointment coming up in a few weeks though.
  9. Hashimoto's symptoms - dietary iodine?

    Ok... drum roll.... Cyclinglady wins! I am just anemic - ferritin is quite bad (10ng/mL), but hemoglobin still intact. Didn't get a look at the full results (Canada problems - doctors only give you the full print-off if you harass them for it), but everything else was apparently ok. I'll be downloading the full results for my file tomorrow from the lab. Not too worried about this, as I've been much more anemic in the past and managed to recover pretty quickly via supplementation. I'll be back for a second blood test in 6 weeks to check it's worked. So while this certainly answers the question of why I've been feeling so crappy for the last few months, the iodine thing still remains a bit of a mystery. I have been avoiding large hits of iodine for about a week and will probably keep at it for a few more to see what (if anything) happens. But for now... more steak and liver haha.
  10. Hashimoto's symptoms - dietary iodine?

    I learned to drive a hard bargain after 3 years of useless doctors appointments in which I was told I was a hypochondriac/"stressed out student" Results are in, but all the medical receptionist said was that they were "non-urgent." Hard to say if that means there were no positive findings, or just that whatever they found isn't serious enough to kill me before my follow-up appointment later in the week.
  11. Hashimoto's symptoms - dietary iodine?

    Ok - so bloods have been taken, now I await the results! Luckily the doctor I saw at the walk-in (grad student problems, ugh) was actually pretty good and I didn't have to fight him, which was a nice change for me. Got my TSH, antibodies, blood glucose, iron and a few other markers on the checklist. I've been gluten-free for a little over 2 years as an FYI. I was definitely a bit sloppy with CC in my first year (doctor did not offer me advice beyond "do not eat gluten"), but seemed to recover pretty well - felt pretty good after 2-3 months. Over the last 8 months or so, I've been feeling increasingly tired/terrible despite being ultra careful with my diet/CC. At first, I thought I might be mystery glutening myself, but at this point I can't think of how to be more cautious without resorting to some unreasonable bubble boy type situation. This leads me to believe that there might be something else wrong with me - but we'll see.
  12. Hashimoto's symptoms - dietary iodine?

    Yeah, not too surprised that this is the way Canada has decided to do things. Canada has what I would describe as a paternalistic "for the greater good" approach to health/medicine/safety regulations, which is sometimes good (bike/motorcycle helmet laws, outright ban on sales of unpasteurized milk) and sometimes frustrating (this scenario). In a way, I kind of get it - there are a lot of misinformed people out there who get the heebie-jeebies when they see "scary" or "unnatural" words on food labels and assume they're bad to the detriment of their own (or their kids') health. That said this is certainly a pain for anyone who must limit iodine intake for medical reasons. If that turns out to be me, I will be very sad because I really like chips and they are a great emergency food (though some brands have low/no salt versions I guess).
  13. Hashimoto's symptoms - dietary iodine?

    Thanks cyclinglady, I was hoping you'd respond! Although I'm hopeful that if it is indeed Hashimoto's that I might feel more like my old self, it's nice to have a realistic perspective on the matter. In distance running there are some notable cases of Olympians with Hashimoto's (see Kara Goucher), but I've also had teammates with the disease who had to quit the sport because they couldn't keep things under control. I have a cousin who as type I diabetes (same side of the family), so diabetes is definitely on my radar. I once had a blood test (pre-diagnosis) that showed above-normal blood sugar, but I have also read that this can occur in undiagnosed celiacs. I'll be adding that to my laundry list of blood reqs to be sure though With regard to my anemia issues, I haven't had any since I was 16 (so, 10 years ago). At this time I was undiagnosed and a vegetarian (very bad idea as it turns out!). I feel fairly confident my issue isn't anemia as I used to get my iron checked 3x per year (track team protocol, reviewed by sports med doctor who specializes in endurance athletes), and it was always good even when I was undiagnosed thanks to heavy supplementation/steak eating. My most recent post- gluten-free blood test had me with normal-high ferritin despite not taking any iron supplements (can't recall exact numbers, but the doctor was very shocked/impressed). I guess my main challenge for now will be to convince a doctor to test me for all these things. For whatever reason, most doctors are convinced that young, fit people cannot have real health problems.
  14. Hashimoto's symptoms - dietary iodine?

    Hmm... I decided to dig a bit here, since that's a really good point which I hadn't thought about! I live in Canada and it turns out that here when salt is used as an ingredient there is no requirement to list iodide as a sub-ingredient or specify that the salt is iodized (link to Canada Food Inspection Agency rules here). Similar to the US, all of our table salt must contain iodide and this must be a listed ingredient. I use a non-iodized salt for my own cooking, and it is plastered with all sorts of warnings to that effect. So I guess in my neck of the woods, there's no way of knowing if the salt is iodized unless you call the company to ask. If I had to guess though, I would assume that if the product was made in Canada, the salt is probably iodized because it is so rare to find non-iodized salt here (I live in Vancouver, which is the Canadian epicentre of hippy-dippy alt foods tinfoil hat-ism and had a hard time finding it). I don't eat much processed foods, but those I do consume are all manufactured Canada. So, it is possible that my observed issues with processed foods containing lots of salt could be an iodine issue. Anyways... hopefully I'll figure it out. Feeling like garbage intermittently is getting real old haha.
  15. I've been feeling increasingly run-down over the past few months and suspect that I might be developing Hashimoto's. I have an aunt who has both celiac disease and Hashimoto's, who later developed thyroid cancer in her 30s - so I would say that my suspicion is extremely reasonable. Over the years I've had numerous blood tests were my TSH was measured (most recent ~16 months ago), but as I understand it these numbers can still be within the normal range in the early stages of the disease. I have no had any thyroid function tests of any kind since beginning to feel this way however, so it's possible that my TSH might be off too at this point. I'll be headed to the doctor this week to ask for a complete thyroid panel (TSH and antibodies), but I had a question about symptoms that I couldn't find a definitive answer to online. I've noticed that high iodine foods, in addition to worsening my DH, seem to make me feel acutely "worse" in sytemically. Until this week, I thought I might have been experiencing some trace/mystery glutening, but the more I think about it, I see that in the last few weeks all of the "bad" days I had were ones where I consumed more iodine than usual (chips, milk, fish, salted peanut butter etc.). I suppose it is possible that I am being low-level CC'd, but I have been extraordinarily careful for the past few months with my diet (following the Fasano diet with a few exceptions such as certified chips & nut butters) and kitchen precautions, and it doesn't seem to have made a huge difference. I am aware that in persons with thyroid disease that excess dietary iodine can cause problems, but couldn't find much on the interaction between this and celiac disease. Since iodine affects those with DH in the absence of thyroid disease, I was wondering if anyone could comment on their experience with this - does iodine make those with DH/but no thyroid problems feel systemically worse, or is this more likely indicative of me having Hashimoto's? This is more for my own curiosity as I think my family history/symptoms/major risk factors are enough that any competent doctor would test me for it (we'll see if my optimism carries though haha). The main symptoms I have been experiencing during these episodes in order of most to least apparent are: extreme fatigue/muscular weakness (I am an elite distance runner and go from 2hr-long running workouts to barely being able to function in the span of a few days, seemingly at random), difficulty breathing/feeling of something being in my throat, flaring of old DH spots/random hives, GI issues (no D, just weird BMs and some general discomfort). It seems these symptoms will last maybe a day or two and resolve pretty quickly assuming I don't continue consuming high iodine foods. I still however, feel generally run down even on my good days, so I'm talking trending from bleh-to-awful as opposed to good-to-bad. For reference, when I have been glutened definitively, I tend to experience more aggressive GI symptoms and also tend to feel very terrible for at least a week (and get DH lesions that take weeks/months to heal). Thoughts?