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When Science Makes Me Sad: "Food-Allergy Fears Drive Overly Restrictive Diets"

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by guest, Nov 5, 2010.

  1. guest

    guest Guest

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    An oral food challenge seems to take into account food intolerances since the foods are administered several time over a few days. Therefor I was wrong and the study seems fine.

    http://www.sciencedaily.com/releases/2010/11/101104171350.htm

    Food-Allergy Fears Drive Overly Restrictive Diets, Study Suggests
    ScienceDaily (Nov. 4, 2010) — Many children, especially those with eczema, are unnecessarily avoiding foods based on incomplete information about potential food-allergies, according to researchers at National Jewish Health. The food avoidance poses a nutritional risk for these children, and is often based primarily on data from blood tests known as serum immunoassays.

    Many factors, including patient and family history, physical examination, and blood and skin tests, should be used when evaluating potential food allergies. The oral food challenge, in which patients consume the suspected allergenic food, is the gold standard test.
    The researchers conducted a retrospective chart review of 125 children evaluated at National Jewish Health for suspected food allergies. Depending on the reason for food avoidance, 84 percent to 93 percent of foods being avoided were restored to their diets after an oral food challenge. The researchers published their study online in The Journal of Pediatrics on Oct. 29. It will appear in a later print version of the journal. "People with known food allergies, especially those with a history of anaphylactic reactions, should by all means avoid those foods," said David Fleischer, MD, lead author of the study and Assistant Professor of Pediatrics at National Jewish Health. "However, a growing number of patients referred to our practice are being placed on strict, unproven food-elimination diets that have led to poor weight gain and malnutrition. These overly restrictive diets have been chosen for a variety of reasons, but overreliance on immunoassay tests appears to be the most common cause."
    Immunoassays detect antibodies in the blood to specific foods, which can potentially cause allergic reactions. Interpretation of the results, however, can be tricky. The tests' ability to predict true food allergy has been validated for only five foods -- cow's milk, hen egg, fish, peanut and tree nuts.
    For all other foods, the numbers derived from lab testing are suggestive but not definitive. Low test values suggest that a child's immune system is sensitized to the food, but not necessarily to the extent that it will cause an allergic reaction. Higher values suggest an increasingly likelihood of true food allergy. None of the tests are 100 percent accurate, however, in predicting clinical food allergy on their own.
    National Jewish Health physicians use blood tests as one piece of evidence in their comprehensive evaluation of food allergy. They also carefully evaluate a patient's history, including any previous reactions to food, the type of reaction, the patient's age, and the result of skin testing for food allergy. They generally perform an oral food challenge when the evidence is mixed and they want a definitive answer to the food allergy question.
    Children in the study were avoiding 177 different foods based primarily on previous blood test results. In many cases, especially those with high test results for egg, milk, shellfish, peanut and tree nut, National Jewish Health elected not to perform oral food challenges. They did perform oral food challenges for 71 foods or about 40 percent of the cases where the clinical allergy was equivocal and it was important to determine whether or not the patient had food allergy. In 86 percent of those cases, the child passed the food challenge and the food was restored to the child's diet. Overall, 66 of the 177 foods avoided because of blood tests were restored to children's diets. For the entire study, 325 foods were restored to the diets of 125 children.
    "When you are able to restore foods such as dairy products, egg, peanut, wheat, and vegetables to a child's diet, it improves their nutrition, reduces the need for expensive substitute foods and makes meal time easier for families," said Donald Leung, MD, PhD, senior author and Edelstein Chair of Pediatric Allergy and Clinical Immunology at National Jewish Health.
    The problem can be especially acute among patients with eczema, also known as atopic dermatitis. Research suggests that specific foods can cause flare-ups in about one third of eczema patients. They commonly have high immunoassay tests to a variety of foods, many of which are not truly allergenic. As a result, many mistakenly avoid foods they believe are causing flare-ups, but neglect basic skin care that is vital to improving the eczema. One hundred and twenty of the 125 children in the study had eczema.
     
  2. Glynis Steele

    Glynis Steele Senior Member

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    Hi Diesel,

    If the truth be known, it does not make me sad, it absolutely makes my blood boil. My daughter was tube fed due to fat malabsorption, for many years. When we tried to introduce oral foods, she had a change of behaviour, that was described as autistic (though she does not officially have autism), which lasted for 3 days. The foods that caused this change were all carbs. If I fed her a carb on a Monday, she would develop autistic traits on Tuesday, Wednesday and Thursday, waking up without any of these traits on a Friday, provided that we did not give her any more carbs. No explanation that made any sense has ever been forthcoming from the GI. No investigations into why this was happening. Stupid assumptions and statements were in abundance, though. Such as autism waxes and wanes, so perhaps this was happeneing and we were trying to fit it into her feeding pattern. Or "Yes we know you allege that this happens", like I'm making it up or something. Or "my collegues and I often have a chuckle at your attempts to help Jasmine".

    Sadly, Jasmine is not tube fed now, and has permanent "autistic traits", as even her tube feed caused these symptoms, when it needed to be increased for extra calories.

    Though we have different conditions to manage, I totally get your kicked in the gut feeling when science let's us down.

    Hope you are feeling well today.

    BW

    Glynis :hug:
     
  3. Esther12

    Esther12 Senior Member

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    I agree with a lot of what you say about mainstream medicine's disinterest in the way different individuals react to different foods...

    but I also think that there are a lot of alternative practitioners out there who are far too willing to put clients onto restrictive diets that are more trouble than they're worth. People with chronic health problems can just like to feel that they're doing something to help - even if it is just a troublesome and pointless ritual like it seems many of these diets are.

    I think that scientist would be far more able to fight against this quackery if they acknowledged that it grows out of their (our) own ignorance.
     
  4. Athene

    Athene ihateticks.me

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    Diesel,
    Excellent post and excellent comments, as usual from you!
    The exactly describes the exasperating and infuriating experience I have had with gastroenterologist after gastroenterologist over the years. They all insisted it was impossible for me to get tummy upset or other symoptoms from carbs. I finally gave up wating time and money on them and did my own experimenting.


    Hi Glynis,

    I am really sorry to hear about your daughters problem. This is exactly what happened to my son. he was diagnosed autistic at 2 and a half (in Italy they test and diagnose early if the symptoms are really clear cut) when he was already diagnosed allergic to dairly, gluten, egg, soya and many other foods.
    I took more and more foods out of his diet - constantly being screamed at by family and doctors (changed doctors many times) who reckoned I was going to give him malnutrition. Each time I figured out the guilty food (I'm convinced they were mostly intolerances not allergies) he improved and did not seem autistic any more for about a months... then the whole thing started again. Eventually he went formula only and managed for about six months, at which point he went into a kind of physical and mental meltdown.

    I was lucky enough to have a fantastic doctor in the hospital, who performed any test I asked him to. it turned out he had deficiencies in various nutrients, and the doctor started him on a few intravenously which we continued with supplements. I asked the doc if he had developed these because if the dietary restricitons I imposed and he said absolutely not, no way, he was getting PLENTY of these nutrients from his formula nd he clearly could not absorb them sufficiently, or else his (mystery) illness was causing him to have a far greater need than normal for certain nutrients.

    2 years on he is doagnosed with Lyme disease and the doctor said this type of symptom manifestation is classic with Lyme disease in children. It's as if they are austistic, but not really. They need massive quantities of magnesium, zinc, B vitamins and particularly choline and B12, vit C, omega 3 fish oils. Adding choline and magnesium does amazing things to make his brain come back.
     
  5. Carrigon

    Carrigon Senior Member

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    What makes me mad is, they are GMO'ing the foods. Then when we get sick from them, they tell us we're nuts. We aren't nuts, our bodies cannot tolerate these man made frankenfoods and we get intolerance to them. Our bodies cannot digest them and don't know what to do with them, it makes us sick.

    It doesn't take a rocket scientist to figure out that if you GMO the foods and mess with the genetic structure, you are creating something that was never meant to be placed in a human body. And when that body gets sick from it, there is no mystery there.

    They do the same with aspartame and msg. Putting drugs in the food, and we get sick, and they tell us we're nuts, even with documented proof these substances cause symptoms.
     
  6. Glynis Steele

    Glynis Steele Senior Member

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    Hi Athene,

    Thanks so much for your reply, and wow to your doctor for doing the necessary tests. He's definately a one to hang on to! ;)

    I hope your son is continuing to improve. I have added some of the supplements you mentioned in the past, but not in high doses, without success. I think it is time I tried them again.

    Best Wishes,

    Glynis x
     
  7. xchocoholic

    xchocoholic Senior Member

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    Great post Diesel,

    The biggest problem I see with this study is that the food allergy tests are too unreliable to depend on. For example, my DD has a severe anaphylatic reaction to peanuts. She had a RAST test done a few years ago and her new GP told her that she didn't have a peanut allergy anymore. Luckily, she called me ... she was sooo happy and on her way to pick up some Reeses, etc ... She opted to get a scratch test at an allergist office and this came back very positive for peanuts. I'm not sure if the skin test is the best way to go but it showed her peanut allergy right away ... Her stupid GP was willing to risk her life all so she could eat peanuts ...

    I'm a celiac and even my gluten serum antibody test came back negative the last time I had it done. And I had a DH rash on my belly at the time. Oh and my stool test for dairy came back negative but within 3 days I start getting black marks on either side of my nose next to my eyes. If I continue to eat dairy, I'll get black marks under my eyes to match. AND I don't even get any digestive symptoms from all of this.

    I was on a dairy eating kick once when I saw my GP and she asked what was up with the black eyes. I told her that it was no big deal, I just get this if I eat dairy. If I read her expression correctly, it went something like "hey dummy, I can't believe I'm having to tell you this. This is your body telling you that you can't eat dairy !!" ... lol ...

    From what I've seen some doctors know how invalid these tests are and some don't. Meanwhile, it's up to us to figure this out on our own. I ended up on a Paleo / low carb / low oxalate diet after a lot of experimenting to see what foods made me feel good and which ones didn't. Meat's a must for me as are leafy greens. All grains and legumes just make me feel weak ...

    FWIW ... From my perspective, a lot of people are getting the message that these tests aren't reliable and they need to look out for foods that don't agree with them. My family, especially my daughter, gets this for sure now ... tc ... x
     
  8. danneva

    danneva

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    Thanks Diesel!
    Many people think they have a food allergy, but in fact they have food intolerance. Food intolerance is common. It can cause some of the same symptoms as a mild food allergy, like an upset stomach. But food intolerance does not cause an allergic reaction. Food intolerance can make you feel bad, but it is not dangerous. A serious food allergy can be dangerous.
    Identifying food intolerance is somewhat more complicated, in that it is almost impossible to determine the source of the discomfort without running medical tests. Detecting the possibility of a food allergy is often an easier process, since the symptoms tend to manifest shortly after consumption and may result in a severe health crisis. However, it is important to seek the services of a qualified healthcare professional in order to determine the exact nature of the allergy or intolerance.
     
  9. wdb

    wdb Admin

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    Are you anti-science or do you just have a disagreement regarding this particular small area of scientific research ?
     
  10. caledonia

    caledonia

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    If you learn self muscle testing, you can quickly and easily determine which foods are good or bad for you to eat. There are videos on YouTube that show how. So much better than trial and error.
     
  11. xchocoholic

    xchocoholic Senior Member

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    Hi caledonia,

    I haven't googled this yet but ... I saw Catseye's doctor do this to her when she was here visiting once so we tried it ourselves later. We noticed that for some items we got a strong reaction and sometimes it was really too weak to read. My arm definitely dropped when I was holding gluten so that was easy but how about those where the response is mild ? Do those count too ? One additional problem I have is that my gut is going to get damaged anytime I'm exposed to gluten so I have to watch out for new food intolerances that I pick up while my gut is damaged. Fun, huh ? ... x
     
  12. wdb

    wdb Admin

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    Isn't that just how science works, in most areas of research there are multiple conflicting theories and ideas and in time (sometimes an excruciating long time) evidence builds and ultimately most of the theories do turn out to be incorrect. It would be difficult to limit what should be researched and what assumptions should be made as sometimes it is an improbable sounding theory that turns out to be correct.
     
  13. Esther12

    Esther12 Senior Member

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    As part of a more abstract discussion about the philosophy of science, I think that scientists do have a responsibility to think about the moral implaications of their assumptions and how they are likely to affect other people, even though this will slow scientific progress. I don't think that enough lessons have been learnt from the problems of scientific racism, etc... and that this has led on to some of the problems we see in the way CFS is researched.

    Scientific research is often viewed so uncritically (especially if it happes to support prior prejudices) that researchers should be taking a more cautious approach when their work will directly affect the way other people are treated.
     
  14. addicteddogma32

    addicteddogma32

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    How many times have we seen reports from scientists stating one thing only for a few years later the experts say something totally contrary? The human body is a complex mechanism and there are so many variables that nothing will work with everybody. It is all trial and error and educated guesswork in many cases.
     
  15. wdb

    wdb Admin

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    I absolutely agree, but it seems like an almost impossible situation to change, what can doctors do other than treat according to the most widely accepted theories at the time, they can't foresee which will eventually turn out to be wrong. On top of that I do believe that all of the researchers weather that is WPI, Simon Wessely, or ear candlers all have faith in their approach and sincerely believe that the work they are doing is what is best for the patients.
     
  16. Esther12

    Esther12 Senior Member

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    Hi.

    I think that those promoting scientific racism were also doing what they thought was right, and largely, trying to develop our own understanding of life on this planet. That doesn't excuse them of the harm they did.

    I don't like the term 'widely accepted'. Accepted by whom? Doctors seem to more easily accept the idea that CFS patients have adopted a sickness role and are manufacturers of their own illness than their patients do. We're all stupid animals, and too often those creatures in positions of authority are able to inflict their ignorance and prejudices upon others. This can occur within the scientific process when we do not have clear and objective evidence to guide us, and this has done a great deal of harm to CFS patients.

    Doctors should try to treat their patients according the limits of the available evidence and be honest about their current ignorance, even if it's seen as widely acceptable to do otherwise.

    I don't think that this is a situation that will change because those who are suffering are power-less patients. Bold and pioneering researchers don't want to have to spend their time thinking about how their poorly thought through research will harm us, so they will not. Maybe if XMRV turns out to be significant, and we have really clear-cut evidence of the quackery of those like Wessely then some minor changes will be made. I doubt even that though.
     
  17. Mark

    Mark Acting CEO

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    Although I tend to agree with Esther12's comment above that even the scientific racists were probably doing what they thought was right, and that this doesn't excuse them, I'm afraid we can't afford the luxury of assuming that all of the researchers involved sincerely believe that the work they are doing is what is best for the patients.

    That's an assumption, and a very big one. In all walks of life we know there are bad people whose motivations are simply sadistic and malicious. Most people have a tendency to assume that educated, highly intelligent, successful people are immune from this, but I see no reason to believe that's the case.

    I think it's very probable that there are alternative therapists out there whose motivations are purely cynical and aiming to exploit patients. I also think it's very probable that there are researchers out there who don't give a damn about the patients and only care about how much money they can make.

    From what I've seen of the 'quackbuster' lobby over the last year, and also in one or two conversations with scientists, I've seen plenty of evidence of an extreme suspicion on their part regarding the motivations of anybody involved in alternative therapies. I've seen the Bad Science board, in particular, to be incredibly quick to judge anything that doesn't fit neatly into their world view of the scientific status quo, quick to judge people involved in alternative therapies as being cynical exploiters of patients, and quick to insult them publicly. That side of the argument seems to have no qualms about waging war on anything they don't like the look of, and no qualms about smearing people and questioning their motives.

    I think we do need to be better than all that sort of behaviour, but we also need to not be naive. We should be clear and logical in our assessment of whether researchers all have good motivations, and therefore we have to be honest in admitting that we just don't know, and we never will be able to know, what truly lies behind people's behaviour. That information is always inaccessible to us, so we should stop trying to guess at those sort of questions.

    Did Hitler actually believe in what he was doing, did he himself believe it was right? Did Bush and Blair take us all to war because he thought it was right, or are all their hearts so black we can't even imagine the horror of it? You can lie awake thinking about it as long as you like but you'll never get any definitive answers to questions like those. What goes on inside another person's mind is not something we'll ever fully understand, and nor should we want to. Instead, IMO, we should just stick to what people say and do, and whether those actions in themselves are good or bad, and not try to guess whether they are evil, mad, stupid, or whatever other label we wish to try to apply.

    But if we should never assume the worst, we shouldn't assume the best either. We shouldn't assume that all researchers are good and honourable people, even if some are misguided. We shouldn't assume there are no "wrong 'uns" involved in research. It's actually quite probable that there are plenty.

    As far as Wessely is concerned, does he truly believe in what he's doing? I can't guess that based on reading his papers, but I can get a pretty good insight by looking at some of the other things he does in the rest of his career; the other things he has got involved in and what he says about them. That's why Camelford is such a crucial piece of evidence for us. Wessely's comments in the report into Camelford are a key document for understanding where he's coming from, IMO.

    There, he argues that any long-term medical investigation into the negative health effects of this known poisoning incident would be a bad idea, because it would cause extra stress to the victims, and because any scientific study would be tainted by the fact that victims know and are worried about the health effects of the poisoning, and therefore any reported adverse health consequences could be due to the stress and worry (and, wink wink, the prospect of litigation), rather than due to the poisoning itself. Since such stress could cause Alzheimer's disease, he explains, even if you found that loads of the poisoned people got Alzheimer's disease, you wouldn't be able to tell if that was due to the stress or due to the Aluminium.

    All of that is just one of Wessely's little sidelines. The pattern is interesting. He pops up all over the place, but seemingly always in defence of government and corporate interests when they are threatened by scientific evidence which could end up in legal action against those interests - using clever but spurious psychological arguments as to why people who say they are sick might not really be sick after all, why their illness might not really be physical, why it would be in the sufferers' best interests not to investigate this question scientifically, etc etc.

    So: look at his whole career, ask what his role has been, overall, ask what he has contributed to human knowledge - knowledge, not speculation - and ask in whose interests he has been acting.

    To me, the idea that he has been acting in the interests of patients, that his motivation is to achieve "the best for the patients", is not credible in light of the evidence. To believe that, you have to believe his argument that his main concern, when arguing against further investigation of Camelford and its effects, is what he says: that he is concerned for the people who were poisioned because he's worried about the stress that such an investigation will cause them. Even when they are pleading for such an investigation. He's genuinely compassionately concerned for the stress that will be caused to those people by having their health investigated; he thinks it's all best left and forgotten about because he cares so much about people.

    Read his Camelford report. If you still believe, after reading that, that his major motivation in life is concern for patients, then I'm afraid I think you'll believe anything. Look at his career as a whole and I think it's pretty clear what he's about. That still doesn't tell me anything about his soul, or his intentions - that's a matter for his own conscience. But it does tell me everything about whose interests he is protecting, and what his role is in the world - and given all of that, I have a really hard time believing he is on our side.

    So: while I absolutely agree that the vast, vast majority of researchers are sincere and believe in their approach, even if they may be misguided, I'm afraid I can't believe that they are all like that. I'm afraid I'm forced to accept that it's almost certain that some of them aren't. I'd like to assume they are all genuine, maybe I'd sleep easier if I could. But I don't think that's an assumption we can afford to make, sadly.
     
  18. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Who or what are the "scientific racists"?
     
  19. guest

    guest Guest

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    Mark: Thanks for your comment. I completely agree.
     
  20. Athene

    Athene ihateticks.me

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    Excellent post, Mark. I totally agree.
     

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