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92Aotearoa

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  1. If you're having problems with labels and want to get well fast, by far the quickest way to do it is to go "label free" (if it has a label, don't eat it! In other words, just don't eat any processed foods at all. After doing this long enough to get completely well, you can then try things one at a time. It's vastly easier to sort things out that way and you stay mostly well while you're doing it. Here in the US, food labels are pretty much of a cruelty joke anyway due to the innumerable exceptions, things that don't have to be listed, etc. etc. Then you have ingredients that are themselves manufactured food products that have their own ingredients and often the manufacturer really doesn't have a clue. Dried foods often get dusted so they aren't sticky and flour is all too often used. "Fermented foods" (yogurt, tofu, etc.) are inoculated with a culture and that culture is grown on some feedstock which may include gluten or another provoking antigen. (Yogurt is very easy to make yourself and is vastly better that way anyway plus 1/3 the cost) Eating only whole fresh foods that you cook yourself is _generally_ safe (although there are exceptions: things get sprayed on produced etc. It's far faster and more effective to start conservatively (very strict diet) and then gradually loosen up as you can, rather than the other way around. And you stay generally well during the process that way. Starting with a liberal diet and gradually tightening it, you stay in poor health until and IF you ever get it all sorted out and its a lot more complicated and problematical to boot. Just suggestions. We each have to work out our own approach.
  2. MORE on why grains are most definately NOT essential to our diets and why we can get along perfectly well without any of them at all!: **** There is no essential or important nutrient present in grains that cannot be found in ample amounts in non-grain foods. The total elimination of all grains from a diet cannot be responsible, in and of itself, for any nutritional deficiency. Nutritional deficiencies resulting from the elimination of all grains from the diet would, therefore, be a result of failure to adequately balance the diet eaten rather than a result of the elimination of grains. [[NOTE that, while there are some "phytonutrients" present in grains that are considered to have good health properties, they (or a very close and equivalent analog) are all present in other (non grain) foods. (and as far as the "fiber" thing goes, the fiber in grains is not all that good and there are other fibers that are far more beneficial). I would highly recommend getting a copy of "Nutrition Almanac" by Kirschmann & Kirschmann. This book (a much earlier edition) was largely the reason that it only took me about as many days to regain over 40 desperately needed pounds once going on a grain free diet (and almost all of the gain was muscle) And I do mean NO grains: i.e.: no corn, rice, millet, sesame, barley, rye, oats, wheat or any member of the botanical grouping at all (NOTE: many refer to corn as a "vegetable" but that is a non scientific "food" grouping and just flagrantly wrong.) This book was exceedingly valuable to me in two very important ways: 1) by reading the lists of deficiency symptoms for each nutrient it became massively apparent which ones I was severely lacking (A, E, D, essential fatty acids (EFAs) and literally every B vitamin deficiency known to man (and in severe form) except for the "butterfly rash" (probably only lacking because I never went out in the sun because of severe photophobia, so nothing to trigger it). 2). It enabled me to work out a very well balanced and extremely "nutrient dense" diet without including any grains whatsoever. (I emphasized foods that were exceptionally high in one or more of the nutrients I was particularly lacking in.) [[[it has always seemed to me to be a grossly negligent omission that high levels of appropriate nutritional supplements are not routinely recommended for patients recovering from celiac disease! When the uptake of nutrients (especially vitamins and EFAs) is impaired taking high dose supplements can allow uptake of larges amounts even with the impairment. This leads to far more rapid recovery. These nutrients are needed for the recovery and with impaired uptake and no supplements the deficiency of them very greatly slows recovery. (I had one doctor insist that I could not possibly have celiac disease because she'd never seen one recover remotely as quickly. But then she'd never seen one that both eliminated ALL grains, ALL processed foods, ALL dairy (for the first 6 months) and take very large doses of supplements.]]] Note that when starting the NO grains whatsoever diet (and, because no processed foods whatsoever no HIDDEN grains either!) I was over 40 pounds underweight and severely ill. And on that diet I regained ALL of the lost weight in only 7 weeks and was, in the words of the doctors, "outrageously healthy" and "in prime athletic condition". And I ate that diet for over a quarter of a century and remained in exceptionally good health. That grains are NOT essential or even very important to a good diet is not at all surprising considering that they were only added to out diets a scant 10,000 years or so ago - a mere blink of the eye in evolutionary terms and far far too short a time for them to have become essential. (In fact the very presence of celiac disease proves that we haven't even yet adapted to the point of being able to fully TOLERATE them yet! (Eons away from being essential!)
  3. ---------- Great post! Nothing whatsoever wrong with long when it's useful and informative! RE: rice and corn: do try them eventually but be prepared for a possible disappointment. I tried after 15 years without any exposure to any grains, starting with the "safest" ones and still could not tolerate even rice or corn. (interestingly I got different symptoms from them than from gluten containing grains.) I strongly suspect that things in the environment initiate the "expression" of celiac disease (and that aflatoxin is one of them! (at the time of my sudden extreme worsening of celiac disease there were flours I was using that had tested at 8,000 times the permitted level of aflatoxins!). I further suspect that what you are eating at the time of exposure to the "initiating" influence determines what range of grains you will react to. (I and others I've talked to that react to all grains were eating a very wide variety at the time of initial problems). Keep it up! IMHO you are very much on the right track and will eventually get good control of the problem. PS: I've found that it is far better to avoid processed foods entirely (much better for your health anyway!), most especially the "gluten free" ones, which appear to be particularly deadly to those of use who react to all grains. All very much JMHO! PPS: been and lived in both places many years. If you have celiac disease, it's VASTLY better to live in New Zealand than in the United States (due to massive differences in attitudes and support (or the lack thereof)) on the part of the government.
  4. As far as I can tell (and I've read a lot of the research) there is no evidence whatsoever nor any scientific reason for stating that none of those with celiac disease react to other grains, including some or even all of the ones considered "safe" for celiac disease patients (rice, corn, etc.) Nor have I seen any evidence (except in the case of oats) of a serious attempt to detect a possible range of variations in sensitivities. Interestingly, last time I checked, the investigations on oats still appear to be incompletely resolved (is it only contamination with wheat that seems to cause some to react?? etc.) Every time I've seen someone claim that celiac disease patient's (supposedly) don't react to corn, rice, or some other "safe" grain the claim is based only on the "clinical definition" of celiac disease. But during the establishment of that definition, nothing, as far as I can see, was done to check the possibility that a subset of celiac disease patients might have more general reactions than the narrowly defined ones on which the clinical definition was was. Disturbingly, every time I've tried to raise this issue, or seen others trying to raise it on various celiac disease boards, the idea was quickly rejected by the medical profession without any data or evidence whatsoever to bad that up other than the "clinical definition". Consider that the clinical definition of celiac disease originally claimed that wheat was the ONLY grain which caused reactions. Now we know that that much isn't true. But what is still unanswered is the question of whether a significant minority of celiac disease patients have a broader range of reactions, even including some who react to any and all grains. Since going grain-free decades ago I have met about a dozen or so other celiac disease patients who also react to any grain at all. In most cases their recognition of that fact was greatly delayed by, in some cases very aggressive, insistence that such additional reactions were not possible. Most of us had found that our health was still pretty poor which gluten free but not grain free and improved remarkably once all grains were eliminated. I would therefor strongly suggest that anyone with celiac disease who is not satisfied with the state of their health do a trial of a few weeks without any grains at all in their diet. If significant improvement results, one can then try reintroducing the "safe" grains one at a time (I'd recommend waiting at least a week or two between) to see whether some or none of them could be tolerated. Medicine works on categorization and in many cases that categorization is incomplete (for example when only wheat was considered a provoking agent). Unfortunately there appears to be a tendency to, when the categorization is "working well enough" to stop further developing it. A major limitation in the utility of the application of any body of knowledge is the degree to which one is aware, or not aware, of its limitations. One of the most destructive blocks to the efficient application of knowledge is a tendency to think that one knows something to be false when, in reality, one just does not know that it is true and cannot see any reason for supposing that it is. Some of our greatest advances have resulted when someone had to courage to test something that was generally "known" to be false. If anyone has any evidence to support the contention that no significant proportion of celiac disease patients react to the "safe" grains or even to all grains I would really like to see it. (Please not that that is entirely different from the observation that most celiac disease patients do not react to the "safe" grains.) IMHO properly addressing this issue could, for many of us, make the difference between indifferent or generally poor health and excellent health. An inappropriate certainty is the bane of progress.
  5. Chlorine is in the same chemical family as iodine and right next to it in the periodic table. Usually it is tightly bonded to something or other and this may be why it doesn't usually have the effect on us that iodine does. But table salt, even pure table salt with nothing else whatsoever in it, is half chlorine. And when dissolved in water, this chlorine is in ionic form and freely available for chemical reactions. I therefore wonder if salt could cause a DH reaction just as iodine does (and suspect that, if it does it probably would take larger amounts of it (due to its relative position in the periodic table). [to check, I'm going to try the "iodine patch test" (I discussed in other posts) except using a salt solution instead of potassium iodine (which I haven't yet be able to get anyway)] My point is that it might be wise to avoid much salt period, whether sea salt or even purified salt (i.e. chemically pure sodium chloride without anything else at all). You really don't need it. Note that getting sufficient iodine in the diet is (barring thyroid problems) generally only a problem in areas distant from the sea for those therein that don't each much food from other areas. * Given the widespread long distance transportation of much of our food supply today I really doubt that iodizing salt is still really needed (JMHO). I've been most vegetarian for decades (only very rarely eating a little fish, dairy (goat) or egg - about once/month) and adding no salt to anything nor eating anything with significant amounts of added salt. (and drinking only distilled water (no tap or spring water) too boot). With no discernible effects except that my blood pressure is consistently 100-110/60-70 (and my three siblings have (and my father had) high blood pressure. (and the last time tested ~ 2 years ago my bone density was "101% of a young adult males" - not bad for a celiac disease patient who'd lost over 20% of lean body weight before diagnosis 25 years earlier!) * that would exclude watersheds to which salmon migrated even when distant from the sea: salmon have a lot of iodine and, surprisingly enough, research has shown that they contribute a large and highly significant amount of biomass input to the sources of the rivers they migrate in (where they leave it all) There may be other exceptions as well. PS: your taste adapts to the lack of added salt and soon things will taste about the same without it as they did with it (better, really, because their flavor is not being masked by salt. Jim
  6. The NZ doctors, IMHO, are exceedingly knowledgeable and up-to-date on celiac disease issues (at least compared to US doctors - I've been to many of both). I would suggest seeing if you could get one to do the iodine patch test (full details and references in my other post on this list). Or maybe they know a newer better test to use. I doubt you'll find better doctors anywhere. JMHO
  7. PCBs react in some ways very similarly to iodine (and other halogens) with the difference that they are much more active in some reactions. In addition, exposure to PCBs causes skin problems ("chloracne") very similar to DH. I am wondering if it is possible for DH to be initiated or aggravated in celiac disease patients by exposure to PCBs. Are there any DH patients on this list that have had known exposure to or tested positive for PCBs? Do any of the medical people reading this list know the answer to this question?
  8. For those without organic or bio chemistry, a polychlorinated biphenyl is like "chlorine on steroids". Chlorine, like iodine is a halogen (i.e.: very similar chemically). Iodine is more active than Cl in some reactions but when you attach chlorine to a phenyl, the effect of sharing electrons between six carbon atoms and their substituents (made possible by the unsaturated bonds in the penyl ring) is to make the chlorine far more active than it would normally be. So I'm wondering if PCBs could activate DH in susceptible patients. The lesions ("chloracne") caused by PCBs are very similar to DH. Maybe in the same way that those with DH are sensitized to iodine, they are also sensitized to PCBs? (i.e.: they react to much smaller exposures to PCBs than would ordinarily be required) PCB contamination in my state (NC) was extremely widespread -deliberately dumped along 1500 miles of country roads - years later screening revealed that over 50% of the nursing mothers in the state have levels of PCBs too high to breastfeed. I would really like to be able to see statistics on the incidence of DH in this state both before and after the incident! IMHO if the level of DH tracked the increase of the PCBs in the environment here that would at the very least, be highly suggestive! Are there any DH patients on this list that have had known exposure to PCBs and, if so, was there any apparent connection between that and their DH?
  9. A way to test for DH (to distinguish it from similar afflications) mentioned in older publications is the iodine patch test: a patch wetted with a 50% solution of potassium iodide is applied. DH is indicated when a blister or lesion forms within one or two days. I am attempting to get this done myself. Although potassium iodide would appear to be an OTC, it is not readily available, at least without other ingredients. I tried to get it compounded by a compounding pharmacist but it seems that they say it requires a doctor's prescription (I suspect their lawyers wouldn't let them even compound salt water without one! ) so now I'm working on that. More time and $! Br J Dermatol. 1980 Sep;103(3):313-7. "The potassium iodide patch test was studied in twenty-six patients with dermatitis herpetiformis. Histological assessment was found more sensitive than clinical. All of five patients with active disease and not on treatment had a positive test, whereas only two of six patients taking a gluten-free diet (GFD) and one of eight taking dapsone were positive. In another two patients taking a GFD, but in whom the diet had not been strict, the test was positive. All three patients in remission and both patients with the linear pattern of IgA (but with active disease) were negative. Immunofluorescence studies showed no difference in the presence, quantity, or distribution of immunoglobulin, complement or fibrinogen between the patch test site and uninvolved skin, or in the uninvolved skin between patients with and without active lesions." (I don't have access right now to the full reference but every source I've seen referring to the test specified a 50% potassium iodide solution.) The lesions resulting from the patch test appear to be the same as spontaneous ones: Am J Dermatopathol. 1983 Dec;5(6):547-54 "The appearances of biopsy specimens of patch tests with potassium iodide taken from 11 patients with dermatitis herpetiformis and linear or granular IgA disease were similar to those taken from spontaneous lesions." If you can obtain the potassium iodide solution this might be a simple and inexpensive "prescreening" that might at least point to which type of specialist you should see. Maybe with the references you could get a GP to do it for you. PS pay attention to "Histological assessment was found more sensitive than clinical"! If you get blister(s) or lesion(s) I would take that as a positive and a stong indication to see someone who specializes in or at least treats a lot of DH. Even if nothing is visible, bear in mind that it might be a case where it's not clinically evident but would have been histologically. (This is a recurring problem in medical diagnosis: many of us patients get stuck in a gray area of uncertain results and it can sometimes take a lot of time, patience, dollars and _luck_ (in finally finding the right doctor) to get out of it. Best of luck! Jim
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