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Family Forum / Parenting / Parenting / April 2009Allergies
My dad was violently (as in debilitating migraines) allergic to mustard and bananas. I have some allergies to pollen, dust etc. My niece has just posted that her son has just been taken to the ER again and this time for a reaction to mango. I don't know what else he has allergies to, except peanuts. My sister has to know how to use an epi-pen if she babysits, and my niece's family severely restricts trips that they will go on because of her son's allergies. My dd#3 has just informed me that her daughter has tested positive for gluten sensitivity. Also she has 2 genes meaning that dd#3 has at least one gene and our SIL has one. She suggested that we might want to consider looking into some of this stuff and possibly consider getting tested. I don't know what benefit testing would have for us. How worried should I be about it? DH is lactose intolerant and one of my granddaughters has a small amount of that too but I don't know of any other problems. > My dad was violently (as in debilitating migraines) allergic to > mustard and bananas. I have some allergies to pollen, dust etc. [quoted text clipped - 10 lines] > to consider looking into some of this stuff and possibly consider > getting tested. If she has two copies of a particular allele (an allele is a particular version of a gene), then you must have one. You say you're allergic to pollen, dust, etc. In addition, you say that your granddaughter has "tested positive for gluten sensitivity." I get the real fealing that these are some tests that don't give a lot of useful answers. In fact, I am wondering if the testing is a waste of money that only misleads people or gives them false expectations of what will happen clinically later. I really doubt that the tests offer much clinically useful information. > I don't know what benefit testing would have for us. How worried > should I be about it? I don't think I would worry a bit. Avoid dusty situations, pollen, etc. But really, I don't think that genetic testing has been shown to be useful clinically for this. (It is useful, for example, learning that a child has the alleles for cystic fibrosis, so that the child can be treated early, before lung damage or malnutrition set in.) However, in the case of a grandmother, I don't see what knowing your genotype (which alleles or versions of a gene you have) will add to your knowledge of your health. Allergies rarely come along suddenly. You have had a lot of years to come up with new allergies. I doubt you have anything to worry about. > DH is lactose intolerant and one of my > granddaughters has a small amount of that too but I don't know of any > other problems. Lactose is the sugar in milk. Most people are not able to digest lactose during adulthood. The ancestors of different people in the world, including some in the Middle East and Europe, evolved in such a way that they continue to make the enzyme, lactase, that breaks down lactose. So the people who are able to digest lactose are mutants (mutants just means they have a mutation - we're all mutants or we would all be the same). Lactose intolerance is a condition (notice I don't say disease) that had absolutely nothing to do with allergies or the immune system. All it has to do with is whether a particular gene is expressed resulting in the lactase being released into the small intestine. It has no bearing whatsoever on allergies, to be the best of my knowledge. As far as your health is concern, I wouldn't worry about. Allergy testing or genetic testing won't help you a bit. As far as your granddaughter, what does her doctors say? I know she didn't come home from daycare and say, "Hey mom. I wonder if I have the alleles (or genes) for allergies. Can we please go to the doctor, so the nurse can draw blood so I can find out?" The bottom line is that without knowing the whole clinical situation, it is really hard to say how useful individual or groups of tests are. Jeff > My dad was violently (as in debilitating migraines) allergic to > mustard and bananas. I have some allergies to pollen, dust etc. [quoted text clipped - 5 lines] > family severely restricts trips that they will go on because of > her son's allergies. people with mango allergies are frequently also sensitive to cashews, as they're related (mangoes & cashews). > My dd#3 has just informed me that her daughter has tested > positive for gluten sensitivity. Also she has 2 genes meaning > that dd#3 has at least one gene and our SIL has one. She > suggested that we might want to consider looking into some of > this stuff and possibly consider getting tested. to see if you have glutin sensitivities perhaps? obviously one or both of you carries the gene for it anyway. > I don't know what benefit testing would have for us. How > worried should I be about it? DH is lactose intolerant and one > of my granddaughters has a small amount of that too but I don't > know of any other problems. do either of you have any problems eating breads? if not, i wouldn't worry too much about it. if you do, there are lots of great glutin free options now, so getting a test & getting glutin out of your diet might make you feel a lot better. lee >> My dad was violently (as in debilitating migraines) allergic to >> mustard and bananas. I have some allergies to pollen, dust etc. [quoted text clipped - 17 lines] > to see if you have glutin sensitivities perhaps? obviously one or > both of you carries the gene for it anyway. This is a misunderstanding. There isn't one gene for it. There are different genes that contribute to whether or not we become glutin sensitive. If we become glutin sensitive, this sensitivity may be expressed differently in different people. Two particular alleles of one gene have been most closely associated with celiac disease, but other genes contribute as well. When I was in medical school, I had one patient who didn't even know she had a genetic disease (cystic fibrosis) until she was in her mid-40s. In residency, I had kids who were diagnosed at a few weeks of age. So having the alleles (versions of a gene) for something doesn't necessarily mean much. It is a function of both genetics and environment. So even if you have a version of a gene that is associated with glutin sensitivity, it doesn't mean that you will get it or will have a particular set of symptoms. Here is an article on the genetics of celiac disease: <http://www.celiac.com/articles/1046/1/Understanding-the-Genetics-of-Gluten-Sensi tivity-by-Dr-Scot-Lewey/Page1.html> Most people who have the alleles (version of a gene) for Celiac disease don't have the disease. Jeff >> I don't know what benefit testing would have for us. How >> worried should I be about it? DH is lactose intolerant and one [quoted text clipped - 6 lines] > out of your diet might make you feel a lot better. > lee >>> My dad was violently (as in debilitating migraines) allergic to >>> mustard and bananas. I have some allergies to pollen, dust etc. [quoted text clipped - 8 lines] >> people with mango allergies are frequently also sensitive to >> cashews, as they're related (mangoes & cashews). I personally don't care for mangos, but apparently this kid loved them. I wonder if some of this is something that he will eventually grow out of, or would have grown out of if there hadn't been so much exposure to it. I know I am much less allergic now than I was as a kid. (Although I still have to wear a respirator to get the winter clothes out of the closet or I sneeze my head off) >> >>> My dd#3 has just informed me that her daughter has tested [quoted text clipped - 32 lines] > >Jeff The place that did the testing had a website and it seemed that what they were worried about was intestinal damage related to gluten. That sounded scary. >>> I don't know what benefit testing would have for us. How >>> worried should I be about it? DH is lactose intolerant and one [quoted text clipped - 6 lines] >> out of your diet might make you feel a lot better. >> lee I love bread and eat a lot of it. I've never believed in a low carb diet. > I personally don't care for mangos, but apparently this kid > loved them. I wonder if some of this is something that he will [quoted text clipped - 3 lines] > wear a respirator to get the winter clothes out of the closet or > I sneeze my head off) depends on a lot of factors, really. some children outgrow food allergies if they can avoid the allergen for some time (years). some never do. it also depends on if it's actually an allergy to the mango, for example, or an allergy/sensitivity to a pesticide, herbicide, shipping preservative, wax or whatever that is commonly found on/in mangoes. allergies are odd, because some people build up a tolerance to some allergins as they age, & other allergins get worse, or appear, with more exposure. for instance, i've successfully managed to avoid contacting poison ivy for almost 30 years. i used to be really violently allergic, but i barely reacted when i got some the summer before last. OTOH, i have never had a problem with bee or wasp stings until last summer. it's nearly impossible to avoid dust, so there's little chance a dust allergy will improve... lee >> I personally don't care for mangos, but apparently this kid >> loved them. I wonder if some of this is something that he will [quoted text clipped - 10 lines] >herbicide, shipping preservative, wax or whatever that is commonly >found on/in mangoes. I wonder if sometimes people don't like certain things because they have an allergy to them. That would explain me, but not my nephew. > allergies are odd, because some people build up a tolerance to >some allergins as they age, & other allergins get worse, or appear, [quoted text clipped - 6 lines] >dust allergy will improve... >lee LOL - yes, dust and mold are pretty much ubiquitous on the East Coast. I have always been allergic to poison ivy, and I also used to get a rash when I was just mowing the lawn next to where it grew. It doesn't seem to be as bad now but I still avoid it. When my parents found out about my allergies (I was in first grade and my mom noticed that I was always sick with a cold which no one else in the family ever got), they gave away our cat. My dad gave me desensitization shots for years. I got a dog when I was 12 (almost 13) and supposed to be past the worst of the childhood allergies but I took dog training classes through the Girl Scouts to learn to handle a dog. Even though I had a Shetland Sheepdog which is not as big or vigorous as a Porty. DH thinks the First Family will have a problem because Michelle obviously does not know how to handle a dog and those kinds of dogs need a firm hand. > I wonder if sometimes people don't like certain things because > they have an allergy to them. That would explain me, but not my > nephew. it's why i don't eat shellfish anymore. i realized when i was 6 that within several hours of eating shellfirh, i'd be throwing up for hours. simple solution. don't eat it. didn't go over so big with my parents at the time, until i pointed out to my mom (a nurse) what happened. she had me eat a single bite of scallop... and i was violently ill. they never gave me seafood again. > When my parents found out about my allergies (I was in first > grade and my mom noticed that I was always sick with a cold [quoted text clipped - 7 lines] > Michelle obviously does not know how to handle a dog and those > kinds of dogs need a firm hand. well, Michelle *and* the kids should take training classes with the dog, not rely on an outside trainer to produce a nice pet for them. that just doesn't happen :) i like Porties. my ex's sister raised them... i'm much happier they got one of them, rather than the "Labradoodle" (a mutt by any other name costs way too much money...) that was being talked about originally. at least a Porty has a pretty good chance of having the typical temperment of the breed, even though it's headstrong & stubborn. with a mutt like a Labradoodle, temperment is pretty much totally a crapshoot. there are wonderful mutts & there are horrible ones... the really bad ones end up in shelters somehow. :p lee I > took dog training classes through the Girl Scouts to learn to handle a > dog. Even though I had a Shetland Sheepdog which is not as big or > vigorous as a Porty. DH thinks the First Family will have a problem > because Michelle obviously does not know how to handle a dog and those > kinds of dogs need a firm hand. Shelties are herding dogs, PWDs are working dogs, and they have very different temperaments and training needs. Shelties, loveable though they are, are not the brightest bulbs on the tree. Bark! Run in circles! Try to herd something! Oh, did you want something? Repeat! A "firm hand" can be a bad thing with a sensitive, highly intelligent dog like a PWD unless it is tempered with a calm and sensitive approach. You can't let them get away with stuff, but you can't be a dominatrix. I wouldn't worry about Mrs. Obama. She knows how to get the proper help if she needs it. > Shelties are herding dogs, PWDs are working dogs, and they have > very different temperaments and training needs. Shelties, > loveable though they are, are not the brightest bulbs on the > tree. Bark! Run in circles! Try to herd something! Oh, did you > want something? Repeat! hahaha, yes! that's exactly a Sheltie! my old dog is a Great Pyrenees/Border Collie... doesn't know if he should herd or guard. guarding seems to be dominant though. my Malamute is confused. he's very submissive & also seems to think he's a livestock guardian. while he's (understandably) afraid of the goats, he is determined that he is the protector of llamas & goats. the Boston Terrier is stubborn & lazy, and the Aussie Cattle Dog/Lab pup is smart & eager to please. he also has really strong herding tendancies, is mouthy (chews), but *hates* water. they all need slightly different approaches to training & discipline. like children, there's no "one approach fits all". lee >> I personally don't care for mangos, but apparently this kid >> loved them. I wonder if some of this is something that he will [quoted text clipped - 10 lines] > herbicide, shipping preservative, wax or whatever that is commonly > found on/in mangoes. It also depends on whether it is a sensitivity or an allergy, which are different things. An allergy is a reaction that is mediated (caused) by a particularly type of antibody, IgE. Sensitivity means that someone is sensative to something. It doesn't have to be an allergy (although allergy is a type of sensitivity). Actually, in studies, they seem to find that kids who are exposed to potential allergens are actually less likely to become allergic to something than kids who aren't exposed to the allergen. <begin rant> Unfortunately, the science and medical education in high school and college for non-medical people (and probably nurses, too) can be improved. The terminology is specific. But, by understanding the terminology and the actual diseases, one is able to make better choices. This is also important for avoiding useless treatments (quacks) and tests. <end rant> > allergies are odd, because some people build up a tolerance to > some allergins as they age, & other allergins get worse, or appear, [quoted text clipped - 3 lines] > summer before last. OTOH, i have never had a problem with bee or > wasp stings until last summer. In addition, there is treatment with allergen exposure by allergists. The immune system is quite complicated and involved in many different illnesses, like diabetes type I and type II, MS, allergies, lupus and hundreds more. > it's nearly impossible to avoid dust, so there's little chance a > dust allergy will improve... > lee When I start to sneeze and get a runny nose, I am not sure if it is a cold or an allergy. I just take pseudophedrine (the stuff you have to buy from a pharmacist because it can be made into amphetamines) and an antihistimine. It either gets better on its own or the meds help. I am not sure. Either way, I feel better. If I don't, I take more until I feel better. It could be that meds help. Or I get better without them. Whatever. Jeff >It also depends on whether it is a sensitivity or an allergy, which are >different things. An allergy is a reaction that is mediated (caused) by [quoted text clipped - 16 lines] > ><end rant> I think there is too much advertising of drugs on TV. I'm sure that drives up the price of the drugs and the side effects seem to me to be worse than the disease. I also think there's too much clean-nik stuff. Too many air fresheners, too many people agonizing over how white your wash is etc. >> allergies are odd, because some people build up a tolerance to >> some allergins as they age, & other allergins get worse, or appear, [quoted text clipped - 22 lines] >Either way, I feel better. If I don't, I take more until I feel better. >It could be that meds help. Or I get better without them. Whatever. DH does as you do - he takes a decongestant or anti-histamine when he gets symptoms. I do the opposite. I hate taking medicine and don't want the bounce back from it. Plus, I'm so used to (from childhood) being stuffed up or sneezing that normally it doesn't really bother me and I don't take anything (which drives dh crazy because he does not like it if I have symptoms that he can't fix even if they don't really bother me). I will suck a cough drop if I have a sore throat or cough, but other than that if it is just sneezing or a runny nose I just let the symptoms go on until they stop. >> It also depends on whether it is a sensitivity or an allergy, which are >> different things. An allergy is a reaction that is mediated (caused) by [quoted text clipped - 23 lines] > I also think there's too much clean-nik stuff. Too many air > fresheners, too many people agonizing over how white your wash is etc. I totally agree. I do think that letting patients know that there is a treatment for some diseases is helpful, overall, there is way too much advertising to doctors and patients for drugs, especially prescription drugs. <...> > DH does as you do - he takes a decongestant or anti-histamine when he > gets symptoms. I do the opposite. I hate taking medicine and don't [quoted text clipped - 3 lines] > like it if I have symptoms that he can't fix even if they don't really > bother me). I swear that because my nose is always a bit stuffed up, I can't smell as well. Considering that I now teach ninth grade, this is a real advantage, particularly with the boys in my school. In fact, it's only the boys who smell in my school. The boys constantly pass gas, some don't have families who know how to wash laundry and others need to add the word "deodorant" to their vocabulary, particularly after gym. Sometimes the boys complain about nasty smells, and I can't smell a thing. I have seriously thought about going to my doctor and seeing if anything can be done, but I fear what would happen if my nose did get fixed. Jeff <lots of stuff I wrote about testing deleted> > The place that did the testing had a website and it seemed that what > they were worried about was intestinal damage related to gluten. That > sounded scary. Of course they did. That's how they get costumers. Sadly, a lot of stuff in the health-care and drug industry is about making money, not helping people. They make it sound scary so that they get people to do the testing, but, they don't really know what the results of their tests mean. <...> > I love bread and eat a lot of it. I've never believed in a low carb > diet. I believe in a low-carb diet. And a high carb diet. More importantly, I believe in a low- or neutral-calorie diet with lots of excercise. Jeff > <lots of stuff I wrote about testing deleted> > [quoted text clipped - 9 lines] > They make it sound scary so that they get people to do the testing, but, > they don't really know what the results of their tests mean. That's a bit too much of a conclusion to jump to, surely? There are certainly places/people like that (earlier this week I was reassuring a patient of mine who'd been to a nutritionist and ended up with all sorts of crank-sounding diagnoses after a test known to be of no scientific value - if I'd rolled my eyes any harder I think my eyeballs would have got vertigo). But coeliac disease - gluten sensitivity - is a known medical condition which can indeed have unpleasant and potentially dangerous long-term health effects if untreated, and it is perfectly possible that this is a completely legitimate medical clinic that have, in fact, done the correct tests, diagnosed coeliac disease in Rosalie's daughter (I suppose that would be celiac disease, since she's American ;-) ), and are quite appropriately following up family members, who will also be at higher risk for the disease. Rosalie, I wouldn't bother with allergy testing unless you yourself have noticed specific symptoms in response to a particular substance (and, even then, I probably wouldn't bother - if you're definitely getting symptoms any time you contact X, it doesn't take a lab test to work out that you should try to avoid X, or that you should take something for the symptoms if X is unavoidable). But, if a question of coeliac disease has been raised, it may be worth you getting the screening test for that (which involves testing for certain antibodies in your blood - if initial tests show up negative then you can generally exclude coeliac disease, and if they show up positive then you can have an endoscopy for a definitive test. This is a known, testable disease with known side-effects, so that I would at least look into, even if you've not been getting obvious symptoms (they can be insidious). At the very least, I would discuss the situation in detail with a doctor and ask their advice. (BTW, if you do decide to go for the coeliac disease test, do make sure you continue to eat bread until you've had it done. The tests measure your body's response to bread, so not eating bread will result in a false negative and confuse the issue.) All the best, Sarah -- http://www.goodenoughmummy.typepad.com >> <lots of stuff I wrote about testing deleted> >> [quoted text clipped - 10 lines] > > That's a bit too much of a conclusion to jump to, surely? Not at all. The big drug companies are in business to make money for their stock-holders. They do things like not publish negative results for their drugs (i.e., they publish studies that show their drugs work, but if the drugs didn't work, they don't publish the results), pay doctors lots of money to speak for them and spend about 30% of income on advertising. Genetic startups are no different. Money has a way of corrupting people. A positive genetic test only means that one is more likely to have the illness. And a negative genetic test only means one is less likely to have the disease. Here is a relevant article on the subject: http://www.cfp.ca/cgi/reprint/55/2/151 and one from the U of Chicago: www.uchospitals.edu/pdf/uch_007936.pdf The only reason why testing might be helpful would be to follow someone with a positive test more closely and to do antibody testing to catch the disease early. Even then, there is only a 3% chance or so of having the disease. > There are > certainly places/people like that (earlier this week I was reassuring [quoted text clipped - 10 lines] > appropriately following up family members, who will also be at higher > risk for the disease. The company that makes the test is in the business of selling the test. I have no doubt that the founders of the company and the scientists who developed the test and determined that the particular genes are involved did so to help people. However, money has a way of corrupting people. With cystic fibrosis and sickle-cell anemia, there is nearly 100% chance of showing symptoms (there have been a few reported cases with people having two copies of the allele for cystic fibrosis without having the illness or having only sterility as a symptom), but, most illnesses, the genetics are far less clear. I think knowing the genetics will help in diagnosis, but, I don't think there is really much one can do to prevent celiac disease. So knowing the results of the test if one doesn't have symptoms is not very useful, unless antibody testing is done to make an early diagnosis and the genetic testing is used to guide who needs more careful follow-up. I hope in the future, we get better guidance on when genetic testing is useful and when it isn't, both in this illness and many others. But, at present, for this sort of thing, I don't think the genetic testing is particularly useful and is misleading, because so many factors determine whether one develops the illness, not just the alleles for one gene that a person has. Jeff > Rosalie, I wouldn't bother with allergy testing unless you yourself > have noticed specific symptoms in response to a particular substance [quoted text clipped - 22 lines] > -- > http://www.goodenoughmummy.typepad.com >>> <lots of stuff I wrote about testing deleted> >>> [quoted text clipped - 91 lines] >> be insidious). At the very least, I would discuss the situation in >> detail with a doctor and ask their advice. The test said only that my granddaughter had gluten sensitivity, not that she had coeliac disease. And it said she had two genes for it so that my daughter must have had one. I have no symptoms whatever that I know about from eating bread, nor do I know of anyone in my family that has. My mother became lactose intolerant when she was about 90, and my oldest dd is also lactose intolerant but as far as I know I am not (yet - I'm only 71). I have had very few issues with eating anything except for once when I was getting the measles at the time of my third grade birthday party when I had pistachio ice cream and right afterwards threw up. I haven't had any pistachio ice cream since. It just doesn't appeal to me. But otherwise I eat just about everything and drink local water almost everywhere (with the exception of Mexico) and do not have any significant problems (knock wood) My dh has had digestive issues (reflux etc), and generally is on a modified low carb diet. He doesn't eat much bread, although he does eat a lot of fruits and vegetables, and things like Triscuits. He has a much more fragile digestive system than I do, so if either of us has this gene, it's probably him. We've both had colonoscopys which I would think should pick up any degeneration of the bowel. My daughter suggested that we get tested, but that was probably because my husband's sister died of breast cancer in her mid 40s and many of dh's cousins are positive for the BRAC2 gene. So I got him tested, as I figured if he was not positive then my three dds wouldn't have to worry about that at least. And dh IS negative for that gene which I told her. I wrote her back that since we weren't having any symptoms and there was no possibility of us having any more children, there was no real reason to do that test. >> (BTW, if you do decide to go for the coeliac disease test, do make >> sure you continue to eat bread until you've had it done. The tests [quoted text clipped - 6 lines] >> -- >> http://www.goodenoughmummy.typepad.com <...> > The test said only that my granddaughter had gluten sensitivity, not > that she had coeliac disease. And it said she had two genes for it so [quoted text clipped - 11 lines] > everywhere (with the exception of Mexico) and do not have any > significant problems (knock wood) When my brother and I were around 10, my brother has some bad lobster and threw it up. Since then, I have had a general aversion to seafood, though I still eat it from time to time. I've only vomited about four times since then, but I don't have any aversions to anything I tossed. My real aversion to seafood in general is the damage done to the environment when the seafood is harvested. I do have an aversion to washabi peas and other washabi foods, however. The last time I ate them, I felt nauseated. I think I was a bit constipated, and the symptoms cleared after I emptied my bowels. > My dh has had digestive issues (reflux etc), and generally is on a > modified low carb diet. He doesn't eat much bread, although he does > eat a lot of fruits and vegetables, and things like Triscuits. He has > a much more fragile digestive system than I do, so if either of us has > this gene, it's probably him. The gene (or more accurately allele which means version of a gene) deals with the immune system. The diseases that are most commonly associated with the gene are autoimmune dieases, including coeliac disease and type I diabetes. However, unless your dh has coeliac disease, your dh is not more or less likely to have that allele than you. I used to have more digestive systems. I had a few episodes of vomiting and a history of having diarrhea after stress (like a big test). Being in the teaching field, I am glad that I no longer have these symptoms and am able to handle more stress without physical problems (and my blood pressure was 100/70 and pulse 50 or 60 the last time I donated blood - so I don't get high blood pressure from stress although I think it went up as they stuck the big needle in). > We've both had colonoscopys which I would think should pick up any > degeneration of the bowel. Maybe. The colonscopy is usually done to prevent cancer by removing polyps before they become cancerous. It won't necessarily pick up inflammation or other problems in the wall of the colon (as opposed to the surface) nor will it pick up problems with how fast (or slow) stuff moves through the digestive system. And it won't show anything in the small intestine. A different type of procedure is used for that. When the time comes for me to get tested, I want to get the video. I am also looking forward to when they are able to use the MRI instead of colonoscopy - I don't like the idea of general anesthesia - although the cleanout is the same as for having the tube up your butt. > My daughter suggested that we get tested, but that was probably > because my husband's sister died of breast cancer in her mid 40s and > many of dh's cousins are positive for the BRAC2 gene. So I got him > tested, as I figured if he was not positive then my three dds wouldn't > have to worry about that at least. And dh IS negative for that gene > which I told her. There was a good article about native Americans in the southwest had the BRAC2 gene the Smithsonian Magazine a year or so ago. The gene is often found in people of Ashkenazi Jewish ancestry. It turns out that there is evidence that Jews may have settled and integrated into the region a few hundred years ago. I found the article really interesting. People with the BRAC2 gene are at increased risk for prostate cancer (men only), breast cancer (both sexes) and pancreatic cancer. > I wrote her back that since we weren't having any symptoms and there > was no possibility of us having any more children, there was no real > reason to do that test. All of the stuff happening with genetics is really fascinating, but, unfortunately, it is really hard to keep up. Scientific American, the New York Times Tuesday Science Times and the internet help me keep up (I also read some more specialized stuff). Unfortunately, for non-scientists, it is hard to keep up, especially when in the US, the science education is not that good to begin with. Jeff >>> (BTW, if you do decide to go for the coeliac disease test, do make >>> sure you continue to eat bread until you've had it done. The tests [quoted text clipped - 6 lines] >>> -- >>> http://www.goodenoughmummy.typepad.com Just to clarify a couple of points: [...] > I have no symptoms whatever that I know about from eating bread, nor > do I know of anyone in my family that has. The problem caused by gluten in coeliac disease is flattening of the intestinal villi (which, as you probably remember, are the multiple tiny folds in the intestinal wall that increases the surface area of the bowel wall to the point where it can absorb sufficient nutrients from the bowel contents. So, the symptoms of coeliac disease are general symptoms related to malabsorption (abdominal pain, diarrhoea, and/or general fatigue/ill health from deficiency in micronutrients) rather than being directly triggered only on occasions when you eat bread. > We've both had colonoscopys which I would think should pick up any > degeneration of the bowel. The standard test for coeliac disease is a duodenal biopsy to look for loss of villi. I don't know how successful a standard colonoscopy would be at picking it up, and I wouldn't assume that it would. > I wrote her back that since we weren't having any symptoms and there > was no possibility of us having any more children, there was no real > reason to do that test. People with coeliac disease who continue eating gluten are at increased risk of some long-term health issues (osteoporosis and intestinal lymphoma, if I remember correctly), so, if you've got a high-risk family history, it's worth getting the initial screening test (a blood test for gluten antibodies) done to check. I do agree with Jeff that, if all your granddaughter had was a genetic test and if she hasn't actually even had a test for coeliac disease, it certainly isn't worth getting the test done. As for what you should do if she *has* been tested for coeliac disease... possibly worth getting the antibody test, though probably not worth it if you don't have any symptoms. (I know testing of first-degree relatives is recommended - I haven't heard that testing of second-degree relatives is.) However, do be aware, as I said, that the symptoms wouldn't be specifically related to times when you eat bread. All the best, Sarah -- http://www.goodenoughmummy.typepad.com [...] > >> They make it sound scary so that they get people to do the testing, but, > >> they don't really know what the results of their tests mean. > > > That's a bit too much of a conclusion to jump to, surely? > > Not at all. [...] > A positive genetic test only means that one is more likely to have the > illness. And a negative genetic test only means one is less likely to > have the disease. Oh - I get why we're differing. When Rosalie wrote that her granddaughter had tested positive for gluten sensitivity, I assumed that that meant actual testing for coeliac disease, and you assumed that it just meant that she'd had a test for genetic susceptibility to coeliac disease. Looking back at Rosalie's original post, I can't actually tell which of us is right, and it makes a major difference (because if you're right in your initial assumption there, then I would completely agree with the rest of what you said). Rosalie? Do you know what tests your granddaughter actually had? All the best, Sarah -- http://www.goodenoughmummy.typepad.com >[...] >> >> They make it sound scary so that they get people to do the testing, but, [quoted text clipped - 7 lines] >> illness. And a negative genetic test only means one is less likely to >> have the disease. I haven't had any of the symptoms (abdominal pain, diarrhoea, and/or general fatigue/ill health from deficiency in micronutrients) that are listed. >Oh - I get why we're differing. When Rosalie wrote that her >granddaughter had tested positive for gluten sensitivity, I assumed [quoted text clipped - 6 lines] > >Rosalie? Do you know what tests your granddaughter actually had? These are the results that my daughter forwarded to me. A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value Fcal Anti-gliadin IgA 22 Units (Normal Range <10 Units) Fecal Anti-tissue Transglutaminase IgA 9 Units (Normal Range <10 Units) Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units) Fecal Anti-casein (cow's milk) IgA 8 Units (Normal Range <10 Units) HLA-DQB1 Molecular analysis, Allele 1 0603 HLA-DQB1 Molecular analysis, Allele 2 0604 Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6) I don't know how far outside normal these things are, but it looks to me like the only one that is way out of whack is the gluten sensitivity stool. >> [...] >>>>> They make it sound scary so that they get people to do the testing, but, [quoted text clipped - 43 lines] > me like the only one that is way out of whack is the gluten > sensitivity stool. The HLA-DQ subtypes that are associated with celiac disease are HLA-DQ2 and HLA-DQ8. According to the report, she has subtype 6, both of which are not associated with the disease. I am not sure what 0603 and 0604 mean. (http://forums.glutenfree.com/topic6719.html is an interpretation of a set of lab results from the same lab.) The Fecal Anti-gliadin IgA I think means that your gd is making anti-bodies to the gliadin protein found in wheat and putting the antibodies into the digestive tract. They eventually pass in the stool, where they were found. This indicates active disease according to the celiac disease sites I saw. I don't know how clinically relevant this is. That's where your gd's pediatrician or pediatric gastroenterologist comes in. Jeff Jeff >>> [...] >>>>>> They make it sound scary so that they get people to do the testing, but, [quoted text clipped - 57 lines] >is. That's where your gd's pediatrician or pediatric gastroenterologist >comes in. OK thanks. That was the only part of the test that I thought might actually mean something. I was trying to figure out if I took her on a trip (in 3 or 4 years) what kind of diet I would have to have for her. >>> These are the results that my daughter forwarded to me. >>> [quoted text clipped - 15 lines] >>> >>> Serologic equivalent: HLA-DQ 1,1 (Subtype 6,6) I asked my daughter why she had her daughter tested and she said that it was because she kept plugging up the toilet with enormous BMs, and a friend told her that it was a symptom of gluten allergy. Also apparently the child does not know that she is kind of leaking little balls of poop in between times. (BTW - she was 8 years old this month.) I really don't think that this is the result of a gluten sensitivity. I've always done what my dad used to call ostrich egg size BMs which did clog the toilet, and my mom was the same way. My daughter also writes: >I'm discovering that she is more of a pain about her food than I thought. Seems like everything we have tried so far the whole family likes except her! I can have ds on a gluten free diet no problem! He doesn't need it of course (I think anyway - he doesn't seem to have a problem). He is totally into trying all the new stuff - very strange. It just seems to me like this is the 'in' diagnosis and I didn't see anything alarming except the gluten sensitivity stool result. The pediatrician did not recommend the testing, just gave her a laxative. My dh, and another dd have lactose intolerance, but I don't think that's necessarily a reason to suspect a problem with gluten. >>>> These are the results that my daughter forwarded to me. >>>> [quoted text clipped - 33 lines] > My dh, and another dd have lactose intolerance, but I don't think > that's necessarily a reason to suspect a problem with gluten. Who ordered the test? Or did your daughter just find the lab on the net and just send the lab some poop? Big poops are not a common symptom of malabsorbtion. Diarrhea or looser stools are. It sounds like the girl is having problem more related to constipation and her family should talk to the pediatrician about how to really help her. There is a compound on the market called polyethylene glycol that will keep water in the intestines to help keep the stool soft. In addition, eating more or different types of fibre may help. Has the glutin free diet helped with the toilet clogging? And if not, can she wait and just go at school? Jeff >>>>> These are the results that my daughter forwarded to me. >>>>> [quoted text clipped - 36 lines] >Who ordered the test? Or did your daughter just find the lab on the net >and just send the lab some poop? I think she just found a lab (probably local) and got them to do the test. I'm really surprised that she would take the word of a friend or acquaintance that this was the way to go, but apparently she did. >Big poops are not a common symptom of malabsorbtion. Diarrhea or looser >stools are. That would make sense to me too. >It sounds like the girl is having problem more related to constipation >and her family should talk to the pediatrician about how to really help [quoted text clipped - 4 lines] >Has the glutin free diet helped with the toilet clogging? And if not, >can she wait and just go at school? My dd hasn't been able to get her to eat much on a gluten free diet. It isn't a problem with her waiting - I think that's part of the problem - she waits and then everything gets built up, and her rectum loses its tone and so she isn't really in control of what comes out of it. > >Rosalie? Do you know what tests your granddaughter actually had? > [quoted text clipped - 5 lines] > Fecal Anti-tissue Transglutaminase IgA 9 Units (Normal Range <10 > Units) Excellent! In that case, your granddaughter almost certainly doesn't have coeliac disease. She has a clinic who don't get the concept of false positives and low specificity. (Sorry - will try to explain that when I get a chance, but just too tired to go into it right now. Bottom line is that those results are not of concern and do *not* indicate likely coeliac disease.) All the best, Sarah -- http://www.goodenoughmummy.typepad.com >> >Rosalie? Do you know what tests your granddaughter actually had? >> [quoted text clipped - 13 lines] >tired to go into it right now. Bottom line is that those results are >not of concern and do *not* indicate likely coeliac disease.) Great - looking forward to the explanation. >All the best, > >Sarah |
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