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Everything posted by Alaskaguy

  1. Interesting about your husband's experience in the hospital, CyclingLady. The one thing that I REALLY do not understand, from reading so many posts of many other people both here and elsewhere on the internet, is this apparent almost criminal indifference, kneejerk denial and/or outright hostility towards the very POSSIBILITY of a patient having Celiac Disease among so many in the medical industry. I have not experienced it myself, as explained above, but it seems that having to fight with multiple doctors over multiple years just to get a diagnosis is the norm for people with Celiac Disease in the USA. Why is this the case?
  2. Thanks Posterboy, that was interesting information. I believe that I had read something elsewhere about tetracycline, at least, being used instead of, or along with, Dapsone for severe or refractory cases of DH. Unfortunately, even if I had medical insurance (which I do not), and had a regular doctor who was even willing to recognize and accept my condition for what it is, I don't know what kind of luck I would have in persuading that hypothetical doctor to give me a particular and non-standard treatment for the DH. Thankfully, due to the (conventional) gluten-free diet I've been on for the last almost 14 months, I have had significant improvement with the DH that to that point had only been getting worse with each passing year . And now being on the Fasano Elimination Diet for the next few months, I remain quite hopeful that I will see a complete or near-complete remission of my symptoms by the end of this year, if not sooner. I am just enormously thankful that I was finally able to figure out, on my own (and after a great deal of research), just what my slowly-worsening condition actually is. I have very little expectation that had I gone the traditional, medical-industry route, and tried to get a diagnosis and treatment from doctors, I would now just be thousands of dollars lighter, vastly frustrated and depressed, and much itchier and rashier than ever, after having been told that I have scabies, or bedbug bites, or "atopic dermatitis", or any number of other incorrect and snap diagnoses from medical practitioners who really don't give a damn or can't be bothered to consider every angle or every possibility. I've already been down that road, twice, in my much-younger days, and to say that I little respect for most doctors is a significant understatement. My one big fear now is that, in the future, should I ever have to be admitted to a hospital, or become unable to cook and care for myself, I will be utterly unable to convince the functionaries and staff who will be responsible for providing my food that I DO suffer from the condition which I do (Celiac disease with dermatitis herpetiformis), and will be refused the necessary strictly gluten-free diet that my health and sanity demands. I'm not sure what I'd do in such a case.
  3. I thought it was the least I could do, after all the help and information that others here, such as yourself Squirmingitch, have provided me here. (By the way, I am on day 7 of the Fasano Diet, and just today I am really noticing a significant lessening in the itching and little DH blisters/bumps, and my skin just feeling "calmer" in general. But I've had good days like this before, here and there within the past five or six months, so I'm not claiming success quite yet.)
  4. Hello All, Upon going gluten-free just over a year ago, I discovered a brand of gluten-free brown rice past named Cadia, which I thought was quite good, and had been using it semi-regularly since But with ongoing flares of dermatitis herpetiformis, I thought I would further investigate some of the foods that I had been repeatedly using. After contacting Cadia, I received the following response yesterday: Thanks for writing in and for being a fan of our Cadia® products. You will be pleased to know that our facility is also wheat, rye, barley and oat free. We hope this has been helpful and that you will continue to enjoy our Cadia® products. So, while I personally won't be using any pasta for a while, being on the Fasano Diet as of last week, it looks like Cadia brand gluten-free pasta is quite safe from any potential gluten cross-contamination. Also, I spoke at some length to a representative from Teasdale this week, a company which makes among other foods, canned hominy (which I have used quite regularly). This representative told me that they DO use shared packaging lines for the hominy with a couple of gluten-containing foods (some kind of sauces --- she didn't say specifically, and I didn't ask). However, she stressed that that those few gluten-containing foods that they do process only contain a very small amount of gluten/wheat, they are only run three or four times a year (while the hominy is run almost every day), and that they perform an elaborate multi-step cleaning and sanitation cycle after every day's run of product (including a thorough steam-cleaning of every surface contacted by food), but most rigorously after the handful of days in which they do run those gluten-containing products. So all in all, I'd say that Teasdale hominy sounds fairly safe from a gluten standpoint --- not perfectly so, but probably better than most canned products.
  5. TDZ, that is interesting that you mention weed-eating as coinciding with the start of your husband's rash, as about 12 years ago I had a possibly similar experience. It was in the spring (meaning late May here in SC Alaska), and I was cutting the lawn. Rather than bagging up all the lawn clippings, I would just take the filled bag off the mower, walk into the woods behind the house, and pull out the clippings with my hand and then scatter them around (so that they didn't just all rot and fester in one stinking pile). Well, the next morning I woke up with (mainly) the thumb and index finger of my right hand, and all the skin in-between, being red and inflamed and VERY itchy. Soon the itching spread, and turned into tiny red bumps. Then it became painful and highly sensitive, like a burn, and looked that way, too. After four or five days, little areas of skin starting loosening up and peeling, and before long pretty much the entire skin of my right hand was peeling off, just like a glove! I did go to a doctor and had a skin biopsy done, but nothing was determined, and the doctor was stumped. Years after that, I was talking to an acquaintance who was a botanist, and she casually mentioned about how the wild buttercups that are a common weed here are severely poisonous, and caustic, and how their juices can burn the skin to the point of it sloughing off. And as it happens, those same buttercups were all through my lawn that year when I had my skin incident! Now, I'm not saying that you might have those same plants in your yard, but there are any number of other plants that could react similarly, especially to somebody whose skin and immune systems are already compromised --- any plants in the carrot/celery family, for example, can play Hell on the skin, and we have at least two such wild plants here in Alaska that have repeatedly caused me great grief. In fact, I have seen groundskeepers here who while weed-whipping will wear full hazmat suits, as the juices from one of those carrot family plants (Cow parsnip) is well known for causing serious skin burns, rashes and even permanent scarring.
  6. Well, TDZ, I certainly hope that your husband is able to get some Dapsone to quickly ameliorate his DH (and that it does not have too many adverse effects on him, either). It sounds like your husband's DH is worse than mine ever was, so I can only imagine the ongoing agony that he's been dealing with. To call DH "just an itch" would be like calling am amputation "just a scratch", i.e., probably nobody who has not experienced it can imagine how frustrating, distracting, maddening and depressing it can really be.
  7. TDZ, I am not a doctor nor any sort of expert here, but my experiences have largely mirrored those of your husband, except that I am 12 months ahead of him on the gluten-free diet (and now recently on the Fasano Gluten Contamination Elimination Diet --- you can look it up here). But one thing that I have repeatedly read is that neither the blood test nor the skin biopsy are conclusive for a diagnosis of DH, with a relatively high "false negative" rate, of maybe 20% to 40%. In my case, I consider the complete resolution of my former life-long GI symptoms, and the significant (but not yet complete) improvement of my skin condition, on the gluten-free diet to be a positive diagnosis of Celiac (there is also my lifelong problem with weak and brittle dental enamel, which went unrecognized by both my dentists and my doctors). And note that while many different GI problems can masquerade as Celiac "Disease" (it is really more of a syndrome and not a disease, in my opinion), there is little if anything that I have ever been able to find that can mimic all the symptoms of dermatitis herpetiformis. And having dermatitis herpetiformis IS by its very nature a definitive diagnosis of having celiac disease as well.
  8. TDZ, I am so sorry to hear about what your husband is going through. I have also experienced unusual chills more or less at the same time as DH outbreaks. Not severe chills with the violent shivering, as one can get from a repeat bout of malaria, but just not being able to get warm, even when the house is at its same normal temperature --- sometimes I would check the thermostat, almost certain that the heat had failed for some reason, then walking around the house with an extra sweater, or even a jacket, and a pullover cap. But my chills would only last a day or two at a time, nothing like what your husband is going through. Do you know how your husband got exposed to so much gluten, so as to have such a severe DH outbreak?
  9. For making oven-roasted pototoes, I cannot recommend highly enough using chicken fat, duck fat or goose fat, for those who can find or have access to these fats. Not only are they significantly unsaturated, being almost liquid at room temperature (unlike say lard), they are surprisingly light in texture and "feel", and overall quite healthy. I carefully skim off and save ALL the rendered fat when I make chicken soup from organic chickens, to use in later dishes. Another perfect fat for this kind of cooking is bear oil, rendered from pure bear fat. I still have two or three quarts of bear oil from a bear that friends of mine killed a couple of years ago, and it is a remarkably versatile, light and tasty oil --- even lighter in texture than chicken fat. But of course you're not going to find bear oil down at Whole Foods!
  10. Oh yes, that does sound good! I've always been fine with potatoes, but just haven't eaten them all that frequently, and usually in a recipe that specifically needed or called for them. But for the next few months, at least, I think I'll be using them much more. Not that I want to try to subsist mostly on carbs here, but I am also going to be using more sweet pototoes, and also trying to incorporate both plantains (cooking bananas) and yuca (cassava root) into my diet as well. Both of the latter are readily available at some ethnic food stores in Anchorage, as that city has large Hispanic, Samoan and Phillipino communities (I know, who would have thought?). Fresh Taro root is also available, but for some reason taro is MUCH more expensive than those others, like $5.00/lb. Sorry, but I'm not paying meat prices for a root vegetable! I've already noticed, on this whole-grain, fish, dairy and legume-free Fasano Diet, that I am going to need to watch and supplement both my calcium/magnesium/Vitamin D intakes, as well as fiber. I know that the Fasano Diet does allow dried beans, but I am very wary of them right now, somewhat for their moderate iodine content, but mainly because of the potential for cross-contamination with gluten grains and/or dust. Maybe I'll reconsider that down the road, as they would be good for adding both non-animal protein (which my version of the Fasano Diet mostly now lacks), as well as for adding fiber to the diet, as Alaska in the winter is not exactly a mecca for fresh green vegetables, particularly leafy vegetables, which in the stores are both expensive and often rather old and sad.
  11. Dziekuje bardzo for that information,, CyclingLady! And you are correct, at least in my case --- I have been EXTREMELY reluctant to eat out in restaurants since going gluten free last year, and have only done so a small handful of times, under very strict conditions and only after talking to both the serving staff and the chefs/cooks at some length. Now, on the Fasano Diet, it is simply not an option. Honestly, I do not understand this recent mania for eating out ALL the time! Not only is it less healthy, in general, than preparing one's own food, it is VASTLY more expensive than eating at home as well!. Are all these people I see crowding the infinitude of restaurants nowadays REALLY that rich, to be able to routinely (if not almost daily) afford a $40 or $50 meal, when they could eat as well or better at home for 1/5 or 1/10 the price? I just don't get it. It seems to me to be just another reflection of how the average person has been becoming less and less self-reliant, and more and more dependent on systems fundamentally outside of their own personal control.
  12. Kareng, I am a bit concerned by your statement here. I no longer have "out of control" DH, but smaller, more scattered, and more readily resolving (for the most part) flareups. And it may be that I am just having what would be "normal" for a person in my situation, being 'only' 13 months into the gluten-free diet. I will readily admit, and perhaps should stress, that the situation is very much better than it was before I went gluten-free, including the fact that my former GI symptoms have totally resolved, and did so quite some time ago now. But shouldn't the Fasano Diet equally help somebody with DH as it would those who have only the more typical gastrointestinal symptoms? I do realize that my DH might very well not resolve, even on the Fasano Diet, for a somewhat extended period yet --- three months, six months, a year maybe? But having "plateau'ed out" about six months ago in my healing of the DH, and then having more frequent and somewhat more intense flareups in the last two or three months, I just feel that I need to be more strict and more pro-active in trying to knock this down.
  13. Posterboy, thank you for passing along those links to that information about corn and celiac disease. It makes total sense to me that corn could, in at least some rarer cases, aggravate the condition in the same way as oats, as corn (maize) is a grain, after all. That is why I still am not sure about the teff that I had used a number of times, either --- not that I'm using any teff, or corn, or oats right now, as of a few days ago. And I did not know about the link between Xanthan Gum and corn! I will certainly keep that in mind. There is something just kind of ..... creepy about xanthan gum, I could just NEVER stand the weird, slimy, snot-like texture that it gives to anything that it is put into. I once bought a rather expensive bottle of what was sold as "vanilla bean paste", thinking it would be just ground-up vanilla beans with maybe a small amount of something liquid to make it pastelike, and instead it was what seemed like a modest amount of vanilla beans in an incredibly thick, goopy, almost gumlike mass of xanthan gum! It totally revolted me --- it was like something that a dinosaur with a head cold would have blown out its nose after waking up in the morning. Again, though, I really appreciate you bringing this information on corn to my attention. There are some truly wonderful people in this forum, and I am tremendously thankful to have found it, and them.
  14. Ah, thank you so much for clarifying that, Squirmingitch! I had actually tried searching threads in this forum to figure out just what nightshade family veggies were doing to people with celiac disease, but the answer was not clear to me. I'll rest a bit easier now when I eat my breakfast potatoes tomorrow morning. You know, I kind of like potatoes for breakfast! I had them, peeled and boiled, with some olive oil, salt (non-iodized), freshly ground black pepper (my one spice concession on the Fasano Diet), and fresh dill. I topped it off with some cubed-up avocado. It was a damn good breakfast, if I say so myself.
  15. Moleface, I have profound respect and sympathy for you in what you what through with the medical industry (yes, it is an industry). I had two different and unrelated health problems back in the 1970s and 1980s, for which I visited a number of different doctors and hospitals. Ironically, the one that was gastrointestinal in nature, which I now strongly believe was celiac disease, went completely undiagnosed --- even after spending almost a week in the hospital being subjected to almost every test under the sun available at that time. And the other, a rare skin condition that may or may not have been related to celiac disease, aquagenic urticaria, when undiagnosed and pooh-poohed by a number of different doctors, who just dismissed it as several different conditions that it patently was not. I am convinced that many if not most doctors 1) truly do not care about their patients, or even see them as sentient beings equal to themselves, and 2) are just as prone, if not more so, to making snap judgements and quick assumptions as the average person. Overall, I have very, very little respect for doctors, and for the medical profession in general.
  16. CyclingLady, you make a good point about all the sugars in fruit juices. I was not intending to drink a steady stream of them, just maybe a small glass of orange or grape juice once a day, for example. But I agree with you that, particularly nowadays, far too many people drink FAR too many sugary beverages! The way I see both kids and adults nowadays sucking down the pop, in particular, is downright creepy --- when I was a kid, that was maybe a once-a-week treat for us, and not a Super-Mega-Macro-Giga-BigGulp worth of it, either. You make an interesting point, though: "Most people who are required to try this diet are severely ill and have often been diagnosed with refractory celiac disease." And I suppose that most people who try this diet are doing so due to severe and/or unresolved gastrointestinal damage. Whereas I am trying it to get my DH under control --- my former and relatively mild GI symptoms all resolved rapidly last year while on the conventional gluten-free diet. But that still doesn't mean that I should not follow all of its guidelines.
  17. Well, I've been dairy-free for six months now, and soy is not really a part of my diet, aside from occasionally using tamari (gluten-free) soy sauce on my rice. But on the Fasano Diet, I was eliminating even the tamari as a matter of course. Corn may be problem. I don't eat or use it much either, but I did have recent problem with the DH that MAY have more-or-less coincided with consuming hominy. But I won't know that for sure until I can start reintroducing foods down the road. I seem to have a bit more of a flare-up today, and in the last three days I have eaten both rice and potatoes each day. I do know that some people have complained about the nightshade family members (potatoes, peppers, eggplant, tomatoes), but just what exactly those foods did to them I am not clear. Mimicking signs of gluten ingestion?
  18. Kareng, I think you are fundamentally incorrect in stating that "the point of the (Fasano) diet is not to give someone lots of choices". The point of the diet is to allow healing by eliminating all potential sources of gluten, not to unnecessarily limit one's food options for no good reason! The fact that the diet IS rather limiting in food options is a secondary aspect of the diet, not it's primary goal. I do indeed want to follow both the letter and the spirit of the diet, in order to accomplish its intended purposes , those being the calming of my still-agitated immune system and attendant DH symptoms, and then allowing the testing of individually reintroduced foods down the road. I am not looking for "outs" or to try to borderline cheat on the guidelines by any means! But it would be pointless, counterproductive and just plain stupid to needlessly limit what might be fundamentally safe options for those already stressed by having to go on this diet. I mean, the point of the entire program is not about draping oneself in sackcloth and ashes, self-flagellation and needless self-deprivation, but about healing. There IS a problem here with these dietary guidelines, and it that, at least as far as I have seen them (and yes, I have read Dr. Fasano et al's original paper), they are not exactly clear when it comes to beverages, and almost totally opaque when it comes to spices. You may argue that spices are just a quibble, but I would strongly disagree, especially when one is on an already severely restricted, monotonous and otherwise rather bland diet. With that said, unless and until I learn otherwise, I am still planning on using essentially no spices while on this diet, aside from those that can be obtained fresh and unprocessed ---- garlic, ginger, onions, hot peppers, and fresh herbs. I was able to find an online source for nutmegs in the shell (most people don't know that nutmeg actually grows inside a shell, like a pecan), so I HAVE to presume that those are OK --- and they'll be great to season-up what I see as a steady stream of sweet potatoes over the coming months. Please understand that I am not arguing with the restrictions, or with the severity of the restrictions, of the Fasano Diet --- I am only asking for clarity in applying those restrictions.
  19. Hello All, (I"m sorry if this is posted in an inappropriate location --- I was not sure just exactly where this subject would be most appropriately placed.) I have just started the Fasano Gluten Contamination Elimination Diet a few days ago, and I think I have a pretty good understanding of it, but I am still unclear about one aspect of it, and that is processed fruit and vegetable juices. In the Fasano Diet guidelines, it states that "100% fruit and vegetable juices" are permissible, but does that mean ONLY 100% fruit and vegetable juices that one prepares oneself, or does it also cover commercially made juices as well? For example, I have a lot of orange juice frozen concentrate that I would often use, but since that was prepared in a commercial facility, would it be automatically off limits? Likewise, what about V-8 vegetable juice, or other bottled or canned but 100% pure fruit and/or vegetable juices? I'm getting rather sick of just plain water! (I have to eliminate milk on my particular diet as well, so I don't even have that option). I did call the manager of the facility where they process the orange juice frozen concentrate, in Florida, and he assured me that they ONLY process products derived from oranges in that facility, not any other fruits, or even citrus fruits, much less anything that could potentially contain grains. So would that be good enough to assume that this frozen concentrated orange juice is OK for me to use on the Fasano Diet? Similarly, there is a 100% Concord Grape Juice sold at Costco under the "Kirkland" brand name, which is bottled in a facility that handles only that one product and a few other 100% pure, not-from-concentrate fruit juices. I would think that this would be sufficient guarantee that it should be safe for a gluten-free diet, even on the Fasano Diet, but is that an unreasonable assumption on my part? For that matter, I do not understand why plain tea (black or green) is considered OK, but ANY herbal teas are not. I just wish that Dr. Fasano and his team were more clear about acceptable beverages under this elimination diet, and gave the rationale for what they would consider acceptable or not in that regard (they are also very ambiguous on spices, as well, which is causing me lots of uncertainty and annoyance.)
  20. CyclingLady, czy ty jest Polskie? Wow, that is too funny! Do you make golabki also? I never developed the knack for making good golabki somehow, but my mom makes them awesome. Too bad we don't have any good substitute for pierogi --- I don't think anyone is ever going to make a gluten-free dough that is that thin and stretchy that still holds together. I do make a mean wild mushroom soup, from wild mushrooms that I gather and dry here in Alaska. I used to make a pretty damned good makowiec (which all the members of the local Polish Club used to rely on and enjoy), but sadly no longer, as that was made of course with a gluten dough. I also do zupa szczawiowa from szczaw that I grow myself.
  21. While in retrospect it is quite obvious that I had GI symptoms of celiac disease for most of my life (I am 56 years old now), it was only after getting a bread machine in 2012 that I started to get the dermatitis herpetiformis. Up until then, I was eating whole-wheat pasta, and wheat-containing breakfast cereals, but only rarely ever ate bread (I was picky, and only liked artisanal bread). And then, I was suddenly eating bread four or five days a week! And not only bread, but whole wheat bread, to which to improve the texture I was adding EXTRA GLUTEN! And then I would wonder why my symptoms would abate (but not disappear completely) in the summers --- because in the summer, I was almost never making bread. Interestingly, a few years ago, I read in an LDS ("Mormon") Church publication that they had modified their longstanding advice for their members to stockpile large amounts of wheat before any other food, due to the recognition that suddenly relying on wheat for one's daily diet, when one had not done so before, "could lead to certain food-related sensitivities and unexpected health problems".
  22. Thank you, Posterboy --- that was very kind of you to supply that information. Yes, I must say, finding this website and this forum has been a Godsend! Especially as there is no local celiac disease group to whom I can turn.
  23. Dear PosterBoy, thank you for that information, and for the link provided. I will definitely look into it! The idea of cross-reactivity seems to make intuitive sense to me, given the many other foods aside from gluten-containing grains that many celiac patients can be, and sometimes are, intolerant of as well --- particularly inasmuch as their intolerance to those other foods usually seems to mimic the symptoms of their intolerance to gluten itself. And really, how else can the deniers of possible cross-reactivity explain these other, non-gluten intolerances in those with celiac?
  24. SI, oh yes, I have the oats (both the grain and the rolled oats) in mylar bags with oxygen absorbers inside, stored in a cool room, so they should be good for literally decades --- probably longer than I will be good for! I'm definitely not worried about them getting stale anytime soon. And yeah, I have so much of them precisely because it DOES normally cost so much to ship almost anything in bulk to Alaska, but I was already bringing up some other freight last year with a freight forwarder, so it was relatively cheap for me to add them onto the pallet and bring them up that way. I have a good amount of teff grain on hand also, but not nearly as much as the oats, and the Teff Co. is very good in that they include the price of shipping (in this case, by the US Postal Service) in with the price of the teff itself. And really, even if I can't do the oats in the future ( 😧! ), it seems rather unlikely that I would also be intolerant of the teff. But if I had to chose between the two, I'd definitely take the oats! About the almond flour, that is an intriguing product that I have no experience with, and almost no knowledge of. The poster Ennis here has already sent me a bunch of recipes using almond flour and coconut flour that he makes himself, so I will definitely look into all that at some point down the road (After my strict Fasano Diet test is finished, Lord willing).
  25. I must admit that this topic of gluten cross-reactivity has me very confused. I read articles online by apparently legitimate scientists who appear to demonstrate it as a fact (at least in terms of milk, yeast, and a few other foods). Then there are others who jump in and heatedly deny it categorically, and who call it merely "myth". So which is it already?
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