Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 I am having a tough time right now. I've been off gluten for a week now. At a potluck on Sunday 14th I ate spaghetti, and Monday, 15th I ate chocolate cake. I got sick for 4 days. So, I'm wondering if I need to be tested to see if I have celiac disease and wondering how or if anyone else has and how? Does anyone know about www.enterolab.com where they use a stool sample? For blood tests I'd have to be eating gluten and I don't want to do that. Thanks, Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 hi lois sounds like you're pretty certain you need to avoid wheat and/or gluten at the moment - why not listen to your body and give it a break from those foods for a while? i think that's what i'd do. i avoid wheat most of the time, because if i have too much of it i get a very itchy patch of excema on one hand. best wishes alice On 25 Jan 2007, at 09:23, Lois Cole wrote: > I am having a tough time right now. I've been off gluten for a week > now. At a potluck on Sunday 14th I ate spaghetti, and Monday, 15th I > ate chocolate cake. I got sick for 4 days. > > So, I'm wondering if I need to be tested to see if I have celiac > disease and wondering how or if anyone else has and how? Does anyone > know about www.enterolab.com where they use a stool sample? For blood > tests I'd have to be eating gluten and I don't want to do that. > > Thanks, > Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 You can have the blood tests performed in the beginning. Do not stop eating gluten or your test may come back negative. Also, the biopsy in nothing. Anytime I've had one, they put me out for it for about 10 - 15 minutes. But for your own sake, do not stop eating gluten until the tests have been done. The last thing you need is a false negative. I've been gluten free, casein free and vegan for three years now and I've never been better. Good luck! Catherine , Lois Cole <loisc100 wrote: > > I am having a tough time right now. I've been off gluten for a week now. At a potluck on Sunday 14th I ate spaghetti, and Monday, 15th I ate chocolate cake. I got sick for 4 days. > > So, I'm wondering if I need to be tested to see if I have celiac disease and wondering how or if anyone else has and how? Does anyone know about www.enterolab.com where they use a stool sample? For blood tests I'd have to be eating gluten and I don't want to do that. > > Thanks, > Lois > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2007 Report Share Posted January 24, 2007 Hi, Lois. I am kind of in the same boat as you, in that I haven't been tested yet, but know the diet is helping me tremendously. I think I have to get my son tested before myself, though. My husband is not sold on the idea for him needing to eat this way, and I need something " in writing " to back up my fears. (I guess I also have to decide if I should do those stool tests with him, or allergy testing first. None of us have stomach pains, etc. like most celiacs seem to get. We have various ADHD symptoms, rashes, and severe fatigue, brain-fog issues, etc. All 3 of my kids and I have done this diet for about 3 months now....) I have been looking at those stool tests you speak of, and have heard great things about them, but have not done it yet. I cannot answer your question with any " authority " or experience, though. I guess I just wrote in to say I know what you are going through. I just got a book from the library, the Living Gluten Free book for " Dummies " book by Danna Korn. At first glance, it looks really really good. It has a section in there about testing,etc., just waiting for me to read it! My friend just read it, and she highly recommended it as well. Good luck. Let us know what you decide! Lisa Wife to Chuck (12 yrs.) Homeschooling mom to Hunter (9), Chase (7), and Brooke (3 1/2). chugust - Lois Cole Vegan and Gluten-free 01/24/2007 3:46:57 PM How did everyone get tested for celiac? I am having a tough time right now. I've been off gluten for a week now. At a potluck on Sunday 14th I ate spaghetti, and Monday, 15th I ate chocolate cake. I got sick for 4 days. So, I'm wondering if I need to be tested to see if I have celiac disease and wondering how or if anyone else has and how? Does anyone know about www.enterolab.com where they use a stool sample? For blood tests I'd have to be eating gluten and I don't want to do that. Thanks, Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 Lois, Many members of my extended family, myself, and my children have tested with enterolab. We have all been pleased with the ease of testing and the professional explanation of test results. It makes a lot of sense to me that the antigliadin antibodies would show up first in the intestine. My daughter tested positive via blood test, my son and I tested negative via blood test. But we all three tested positive through enterolab. Her numbers were much higher, indicating actual intestinal damage. I believe that the testing enterolab offers is much more likely to reveal the disease process early on, before we get to the big malabsorption issues caused by many years of continued exposure to gluten. (by which time our blood tests would finally come back positive.) The three of us have been gluten-free for about 16 months now. We are experiencing benefits we never imagined. My son is doing ever so much better in school, my daughter is experiencing improved energy, and I have noticed a huge reduction in musculoskeletal aches and pains. Hope this helps, Karen Lois Cole wrote: > > I am having a tough time right now. I've been off gluten for a week > now. At a potluck on Sunday 14th I ate spaghetti, and Monday, 15th I > ate chocolate cake. I got sick for 4 days. > > So, I'm wondering if I need to be tested to see if I have celiac > disease and wondering how or if anyone else has and how? Does anyone > know about www.enterolab.com where they use a stool sample? For blood > tests I'd have to be eating gluten and I don't want to do that. > > Thanks, > Lois > > > > > <> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 Catherine, I appreciate your input. I just have a few more thoughts/questions myself. Well, I just read the section in the Gluten-free for Dummies book, and she says you would have to eat 1 or 2 slices of regular gluten bread every day for 3 months before doing the blood testing in order to not get any " false negative " tests. I guess it's too late for me, since I don't want to do that, and get real sick again so I can have an accurate blood test. It has been very hard work these past 3 1/2 mos. that I have been gluten-free. I don't want to backslide. I really think that the enterolab's stool testing makes more sense. I know it must be a new technique, and on the cutting edge, or else why would there be nothing about their tests in any of these gluten-free and celiac books I am reading? Maybe I did something terribly, horribly wrong by not testing before I went gluten-free, but I simply went on this diet by my doctor's suggestion. I was truly ignorant about all of this in the beginning, and am having to learn as I go. It's kind of too late for blood testing now, right? Besides the fact that I would have to find a doctor to order the blood tests and/or intestinal biopsy, AND the cost of having them performed. We have absolutely lousy insurance. I am already paying for everything with my wonderful doctor out of pocket (he's out of network, but at least he believed me that I was having problems and didn't think I was crazy like every other doctor I have seen my whole life!) Not to mention that I would need to test my 3 children as well. I am highly suspicious that my husband is celiac or gluten-sensitive, but he won't hear of it! (His mother is a bonafide celiac, complete with truly positive blood-work and biopsy....) But as Danna Korn's book points out, just the fact that I have been feeling much better on the GFCF diet, means that I in the very least have gluten sensitivity/intolerance. How would the blood test show that? Or does it just show if you are truly " celiac " ? Or, maybe I am celiac, but I haven't had it long enough to really show any permanent intestinal damage. Do I really want to self-induce intestinal damage to secure a positive blood test? Forgive me, but I have so many thoughts and ideas swimming around in my brain right now, I may be getting things a bit mixed-up. I am truly on brain-overload from all this reading I am trying to do (technical diagnostic stuff, as well as cooking info/recipes!!!) My " foggy-brain " can't take it right now, although it is getting better the longer I am GF..... : ) And for the record, I don't really think I am a true celiac, or else wouldn't I have more severe GI symptoms? My insensitivity and/or intolerance manifests in severe constipation (no matter how much fiber I choke down!!), foggy brain, severe fatigue, drowsiness, etc. It also affected my thyroid, because within 4 days of going GF, I had to stop my thyroid medication for a couple weeks, before it all stabilized. I went totally hyperactive thyroid, and barely slept for 1 1/2 wks. because of going GF. My heart was palpating so badly, I truly feared I would have a heart attack it got so bad. Oh, and my thyroid problem IS auto-immune. Anyway, I in no way believe I have a handle on all of this yet. I am just trying to figure it all out. Thanks for listening, and for any pointers you guys have for us newbies. Thanks for bringing up the subject, Lois. Lisa Wife to Chuck (12 yrs.) Homeschooling mom to Hunter (9), Chase (7), and Brooke (3 1/2). chugust Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 , " chugust " <chugust wrote: > > I really think that the enterolab's stool testing makes more > sense. I know it must be a new technique, and on the cutting edge, > or else why would there be nothing about their tests in any of > these gluten-free and celiac books I am reading? I'm in the same situation as you, although my gluten-free period has only been a couple weeks. Already I feel better ... although my constipation hasn't changed. You've done this longer; if I might ask, has this improved for you? If so, how long did it take? I've asked people on the celiac.com board and been told it might take 3 months. But then I'm not celiac, I don't think. Perhaps things will improve quicker. Forgive the graphic talk, everyone! I've been spending too much time on that other board where it isn't deemed socially inappropriate to discuss one's poo [grin]. I'll share my impressions from research. Part of the problem is the diagnosis of celiac disease. Currently it is defined as damage to the intestinal villi. So, many doctors insist on that before they will give a diagnosis. Some will go with blood testing if there are also severe symptoms. Few doctors go with Enterolab (and few insurance companies pay for it) it seems for two reasons: (1) it hasn't been written up in any peer-reviewed journals, and (2) it can reveal problems BEFORE the intestinal damage is done. It is the difference between those who say that 10-30 percent of the population is gluten intolerant, as opposed to those who say that the only problem is the 1 in 133 who have " true " celiac. To me, it makes more sense to prevent the damage in the first place if you can. I found the following two discussions of the issue, one by Dr. Fine of Enterolab and one by someone else: http://www.enterolab.com/StaticPages/EarlyDiagnosis.htm http://www.content.onlypunjab.com/Article/Diagnosing-Celiac-Disease- and-Gluten-Sensitivity/22689 I've decided to go ahead and get the Enterolab testing. I'd like to know if there is something there or I've talked and researched myself into something. Frankly, I don't see what you get with an official diagnosis. If the only treatment is avoiding gluten, you don't need a doctor for that. > But as Danna Korn's book points out, just the fact that I have been > feeling much better on the GFCF diet, means that I in the very > least have gluten sensitivity/intolerance. She and you make a good point. Feeling better is the important thing, not what label a doctor may or may not put on you. At least that's how I look at it. But then, I try to avoid doctor's whenever possible. For most of the health problems I've had (that is, excluding orthopedic problems and infections that respond to antibiotics), doctors haven't been able to address and I've been able to figure out myself. > Lisa > Wife to Chuck (12 yrs.) > Homeschooling mom to Hunter (9), Chase (7), and Brooke (3 1/2). > chugust That's why you're thinking and researching yourself into brain fog! I too homeschooled. But my homeschooled child (the other wasn't -- too long and irrelevant story to go into here) is in college now. After more than a year, I finally cut myself off from homeschooling boards. And now I'm spending time on boards dealing with nutrition. I just can't win -- or maybe if I spent less time on the computer, I would feel bound to do something more constructive LOL DianeR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 Actually it's very important to get the Celiac Diagnosis. Reasons for this are that because of the autoimmune nature of the disease, most people will have at least two autoimmune problems or more. I for one am totally happy about receiving the diagnosis. I subsequently 'found out' that I have other autoimmune problems, problems doctors for over 30 years have ignored. Now they know that I'm actually not a hypochonrdriac and that my connective tissue diseases are real. It sure helps with pain management and the appropriate medications. There are also other issues with casein. Many people with Celiac's are casein intolerant also. Casein is also very damaging if not tolerated in the body. Many Celiac's go dairy free for a short time, only to be able to tolerate milk and cheeses later on. But many of us don't. While I realize that medical coverage in the U.S. can be complicated, For your sake and your children or other relatives sake, a diagnosis is mandatory. I have a relative who died of complications from untreated Celiac Disease. We were all too late to save her. She was only 48. It's been found out since that many of our family, while having Celiac Disease have been found out to have things like MS, Connective Tissue Disease and Thyroid problems. I honestly think that the docs would not have put two and two together if we hadn't have found out about the Celiac. Good luck to you all. Catherine Catherine , " hathor42 " <rose301 wrote: > > , " chugust@ " > <chugust@> wrote: > > > > I really think that the enterolab's stool testing makes more > > sense. I know it must be a new technique, and on the cutting edge, > > or else why would there be nothing about their tests in any of > > these gluten-free and celiac books I am reading? > > I'm in the same situation as you, although my gluten-free period has > only been a couple weeks. Already I feel better ... although my > constipation hasn't changed. You've done this longer; if I might > ask, has this improved for you? If so, how long did it take? I've > asked people on the celiac.com board and been told it might take 3 > months. But then I'm not celiac, I don't think. Perhaps things will > improve quicker. > > Forgive the graphic talk, everyone! I've been spending too much time > on that other board where it isn't deemed socially inappropriate to > discuss one's poo [grin]. > > I'll share my impressions from research. Part of the problem is the > diagnosis of celiac disease. Currently it is defined as damage to > the intestinal villi. So, many doctors insist on that before they > will give a diagnosis. Some will go with blood testing if there are > also severe symptoms. Few doctors go with Enterolab (and few > insurance companies pay for it) it seems for two reasons: (1) it > hasn't been written up in any peer-reviewed journals, and (2) it can > reveal problems BEFORE the intestinal damage is done. It is the > difference between those who say that 10-30 percent of the population > is gluten intolerant, as opposed to those who say that the only > problem is the 1 in 133 who have " true " celiac. > > To me, it makes more sense to prevent the damage in the first place > if you can. > > I found the following two discussions of the issue, one by Dr. Fine > of Enterolab and one by someone else: > > http://www.enterolab.com/StaticPages/EarlyDiagnosis.htm > http://www.content.onlypunjab.com/Article/Diagnosing-Celiac-Disease- > and-Gluten-Sensitivity/22689 > > I've decided to go ahead and get the Enterolab testing. I'd like to > know if there is something there or I've talked and researched myself > into something. > > Frankly, I don't see what you get with an official diagnosis. If the > only treatment is avoiding gluten, you don't need a doctor for that. > > > But as Danna Korn's book points out, just the fact that I have been > > feeling much better on the GFCF diet, means that I in the very > > least have gluten sensitivity/intolerance. > > She and you make a good point. Feeling better is the important > thing, not what label a doctor may or may not put on you. At least > that's how I look at it. But then, I try to avoid doctor's whenever > possible. For most of the health problems I've had (that is, > excluding orthopedic problems and infections that respond to > antibiotics), doctors haven't been able to address and I've been able > to figure out myself. > > > Lisa > > Wife to Chuck (12 yrs.) > > Homeschooling mom to Hunter (9), Chase (7), and Brooke (3 1/2). > > chugust@ > > That's why you're thinking and researching yourself into brain fog! > I too homeschooled. But my homeschooled child (the other wasn't -- > too long and irrelevant story to go into here) is in college now. > After more than a year, I finally cut myself off from homeschooling > boards. And now I'm spending time on boards dealing with nutrition. > I just can't win -- or maybe if I spent less time on the computer, I > would feel bound to do something more constructive LOL > > DianeR > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 What I've learned through reading and personal experience is that symptoms for CD can range from nothing to severe and everything from gastrointestinal to psychological. When you're dealing with malabsorbsion, you don't have a lot of ways of knowing it will affect your entire body. CD is complex and most of the " renowned " docs in the field imply that they in no way have the disease figured out. That said, I think it's probably safe to say that even if your struggles with gastrointestinal problems aren't as severe as say your thyroid or if by just taking gluten out of your diet makes you feel better, at the very least you probably have a " sensitivity " to gluten. I didn't do the enterolab testing because I was " lucky " enough to have symptoms so severe that blood work warranted me a biopsy, which my GI doc in turn told me that he was positive from the damage that I'd been suffering for 20+ years with gluten intolerance. (i was 24 at the time) Good to know that I passed the " gold standard " for testing, but bad in that the villi in my intestines was so flat they weren't sure how long it would take to heal or if it would ever completely heal. My symptoms were severe anemia, lactose intolerance, bloating so painful I couldn't stand up straight, diarrhea constantly, constant nausea, bad headaches, my vision began to deteriorate, I gained a ton of weight, major onset of daily panic attacks, depression, constant fatigue/tiredness, i started losing hair around my scalp, hypoglycemic, I still have weird skin problems ... It got so bad that I was afraid to leave my house. Doctors still are very new to the concept of CD. I had to convince my primary doc to give me the blood test, even with my symptoms and positive blood work, ya know what? They still had me tested for colon cancer! because the primary doc was convinced that a 24 year old who was overweight couldn't have CD and this was only 4 years ago. If enterolab has testing that will allow people to know BEFORE the damage to your body is as severe as mine was, I say do it. Don't start eating gluten again so that you can do blood work that may or may not allow for a biopsy. All it's going to show is the extent to which the damage is done to your intestines and you have no way of knowing what more unnecessary damage it may cause. Good luck! Marie =) On 1/25/07, hathor42 <rose301 wrote: > > --- In <%40>, > " chugust " > <chugust wrote: > > > > I really think that the enterolab's stool testing makes more > > sense. I know it must be a new technique, and on the cutting edge, > > or else why would there be nothing about their tests in any of > > these gluten-free and celiac books I am reading? > > I'm in the same situation as you, although my gluten-free period has > only been a couple weeks. Already I feel better ... although my > constipation hasn't changed. You've done this longer; if I might > ask, has this improved for you? If so, how long did it take? I've > asked people on the celiac.com board and been told it might take 3 > months. But then I'm not celiac, I don't think. Perhaps things will > improve quicker. > > Forgive the graphic talk, everyone! I've been spending too much time > on that other board where it isn't deemed socially inappropriate to > discuss one's poo [grin]. > > I'll share my impressions from research. Part of the problem is the > diagnosis of celiac disease. Currently it is defined as damage to > the intestinal villi. So, many doctors insist on that before they > will give a diagnosis. Some will go with blood testing if there are > also severe symptoms. Few doctors go with Enterolab (and few > insurance companies pay for it) it seems for two reasons: (1) it > hasn't been written up in any peer-reviewed journals, and (2) it can > reveal problems BEFORE the intestinal damage is done. It is the > difference between those who say that 10-30 percent of the population > is gluten intolerant, as opposed to those who say that the only > problem is the 1 in 133 who have " true " celiac. > > To me, it makes more sense to prevent the damage in the first place > if you can. > > I found the following two discussions of the issue, one by Dr. Fine > of Enterolab and one by someone else: > > http://www.enterolab.com/StaticPages/EarlyDiagnosis.htm > http://www.content.onlypunjab.com/Article/Diagnosing-Celiac-Disease- > and-Gluten-Sensitivity/22689 > > I've decided to go ahead and get the Enterolab testing. I'd like to > know if there is something there or I've talked and researched myself > into something. > > Frankly, I don't see what you get with an official diagnosis. If the > only treatment is avoiding gluten, you don't need a doctor for that. > > > But as Danna Korn's book points out, just the fact that I have been > > feeling much better on the GFCF diet, means that I in the very > > least have gluten sensitivity/intolerance. > > She and you make a good point. Feeling better is the important > thing, not what label a doctor may or may not put on you. At least > that's how I look at it. But then, I try to avoid doctor's whenever > possible. For most of the health problems I've had (that is, > excluding orthopedic problems and infections that respond to > antibiotics), doctors haven't been able to address and I've been able > to figure out myself. > > > Lisa > > Wife to Chuck (12 yrs.) > > Homeschooling mom to Hunter (9), Chase (7), and Brooke (3 1/2). > > chugust > > That's why you're thinking and researching yourself into brain fog! > I too homeschooled. But my homeschooled child (the other wasn't -- > too long and irrelevant story to go into here) is in college now. > After more than a year, I finally cut myself off from homeschooling > boards. And now I'm spending time on boards dealing with nutrition. > I just can't win -- or maybe if I spent less time on the computer, I > would feel bound to do something more constructive LOL > > DianeR > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 Hi Lisa, I like what Dr. McDougall, M.D. says, " However, the connection between gluten and this disease is so close that the diagnosis can also be made when the patient experiences dramatic improvement of symptoms upon following a gluten-free diet " . Can read this at, http://www.drmcdougall.com/misc/2005nl/sept/050900celiac.htm , from his Sept.2005 newsletter. I really feel I don't need any tests, because by eating gluten I get so sick with intestinal (abdominal) bloating, diarrhea, and chronic fatigue, etc... From what Dr. Kenneth Fine, a gastroenterolgist says makes sense, that the blood tests and biopsy are not accurate and can give a false negative, when in fact the person does have celiac disease. http://www.finerhealth.com/Essay is a talk Dr. Fine gave to the Greater Louisville Celiac Sprue Support group. I am not intentionally eating gluten, and wonder if I have food allergies as well? Before I went on the raw food diet I never had all these digestive problems. I believe the raw diet brought celiac to the surface. Thanks, Lois " chugust " <chugust wrote: Hi, Lois. I am kind of in the same boat as you, in that I haven't been tested yet, but know the diet is helping me tremendously. I think I have to get my son tested before myself, though. My husband is not sold on the idea for him needing to eat this way, and I need something " in writing " to back up my fears. (I guess I also have to decide if I should do those stool tests with him, or allergy testing first. None of us have stomach pains, etc. like most celiacs seem to get. We have various ADHD symptoms, rashes, and severe fatigue, brain-fog issues, etc. All 3 of my kids and I have done this diet for about 3 months now....) I have been looking at those stool tests you speak of, and have heard great things about them, but have not done it yet. I cannot answer your question with any " authority " or experience, though. I guess I just wrote in to say I know what you are going through. I just got a book from the library, the Living Gluten Free book for " Dummies " book by Danna Korn. At first glance, it looks really really good. It has a section in there about testing,etc., just waiting for me to read it! My friend just read it, and she highly recommended it as well. Good luck. Let us know what you decide! Lisa Wife to Chuck (12 yrs.) Homeschooling mom to Hunter (9), Chase (7), and Brooke (3 1/2). chugust - Lois Cole Vegan and Gluten-free 01/24/2007 3:46:57 PM How did everyone get tested for celiac? I am having a tough time right now. I've been off gluten for a week now. At a potluck on Sunday 14th I ate spaghetti, and Monday, 15th I ate chocolate cake. I got sick for 4 days. So, I'm wondering if I need to be tested to see if I have celiac disease and wondering how or if anyone else has and how? Does anyone know about www.enterolab.com where they use a stool sample? For blood tests I'd have to be eating gluten and I don't want to do that. Thanks, Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 Karen, Thanks for sharing this. My husband has been in doubt about enterolab. Now I have some good report to show him. It just makes so much more sense to me than blood tests and invasive biopsies. Thanks, Lois Tom and Karen Ekkens <tekkens wrote: Lois, Many members of my extended family, myself, and my children have tested with enterolab. We have all been pleased with the ease of testing and the professional explanation of test results. It makes a lot of sense to me that the antigliadin antibodies would show up first in the intestine. My daughter tested positive via blood test, my son and I tested negative via blood test. But we all three tested positive through enterolab. Her numbers were much higher, indicating actual intestinal damage. I believe that the testing enterolab offers is much more likely to reveal the disease process early on, before we get to the big malabsorption issues caused by many years of continued exposure to gluten. (by which time our blood tests would finally come back positive.) The three of us have been gluten-free for about 16 months now. We are experiencing benefits we never imagined. My son is doing ever so much better in school, my daughter is experiencing improved energy, and I have noticed a huge reduction in musculoskeletal aches and pains. Hope this helps, Karen Lois Cole wrote: > > I am having a tough time right now. I've been off gluten for a week > now. At a potluck on Sunday 14th I ate spaghetti, and Monday, 15th I > ate chocolate cake. I got sick for 4 days. > > So, I'm wondering if I need to be tested to see if I have celiac > disease and wondering how or if anyone else has and how? Does anyone > know about www.enterolab.com where they use a stool sample? For blood > tests I'd have to be eating gluten and I don't want to do that. > > Thanks, > Lois > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2007 Report Share Posted January 25, 2007 Here is the talk Dr. Kennith Fine gave to the Greater Louisville Celiac Sprue support group. http://www.finerhealth.com/Essay . Also, Dr. McDougall says if a gluten-free diet makes your feel better, then this is a test in itself. http://www.drmcdougall.com/misc/2005nl/sept/050900celiac.htm. The Sept.2005 newsletter. Lois " chugust " <chugust wrote: Catherine, I appreciate your input. I just have a few more thoughts/questions myself. Well, I just read the section in the Gluten-free for Dummies book, and she says you would have to eat 1 or 2 slices of regular gluten bread every day for 3 months before doing the blood testing in order to not get any " false negative " tests. I guess it's too late for me, since I don't want to do that, and get real sick again so I can have an accurate blood test. It has been very hard work these past 3 1/2 mos. that I have been gluten-free. I don't want to backslide. I really think that the enterolab's stool testing makes more sense. I know it must be a new technique, and on the cutting edge, or else why would there be nothing about their tests in any of these gluten-free and celiac books I am reading? Maybe I did something terribly, horribly wrong by not testing before I went gluten-free, but I simply went on this diet by my doctor's suggestion. I was truly ignorant about all of this in the beginning, and am having to learn as I go. It's kind of too late for blood testing now, right? Besides the fact that I would have to find a doctor to order the blood tests and/or intestinal biopsy, AND the cost of having them performed. We have absolutely lousy insurance. I am already paying for everything with my wonderful doctor out of pocket (he's out of network, but at least he believed me that I was having problems and didn't think I was crazy like every other doctor I have seen my whole life!) Not to mention that I would need to test my 3 children as well. I am highly suspicious that my husband is celiac or gluten-sensitive, but he won't hear of it! (His mother is a bonafide celiac, complete with truly positive blood-work and biopsy....) But as Danna Korn's book points out, just the fact that I have been feeling much better on the GFCF diet, means that I in the very least have gluten sensitivity/intolerance. How would the blood test show that? Or does it just show if you are truly " celiac " ? Or, maybe I am celiac, but I haven't had it long enough to really show any permanent intestinal damage. Do I really want to self-induce intestinal damage to secure a positive blood test? Forgive me, but I have so many thoughts and ideas swimming around in my brain right now, I may be getting things a bit mixed-up. I am truly on brain-overload from all this reading I am trying to do (technical diagnostic stuff, as well as cooking info/recipes!!!) My " foggy-brain " can't take it right now, although it is getting better the longer I am GF..... : ) And for the record, I don't really think I am a true celiac, or else wouldn't I have more severe GI symptoms? My insensitivity and/or intolerance manifests in severe constipation (no matter how much fiber I choke down!!), foggy brain, severe fatigue, drowsiness, etc. It also affected my thyroid, because within 4 days of going GF, I had to stop my thyroid medication for a couple weeks, before it all stabilized. I went totally hyperactive thyroid, and barely slept for 1 1/2 wks. because of going GF. My heart was palpating so badly, I truly feared I would have a heart attack it got so bad. Oh, and my thyroid problem IS auto-immune. Anyway, I in no way believe I have a handle on all of this yet. I am just trying to figure it all out. Thanks for listening, and for any pointers you guys have for us newbies. Thanks for bringing up the subject, Lois. Lisa Wife to Chuck (12 yrs.) Homeschooling mom to Hunter (9), Chase (7), and Brooke (3 1/2). chugust Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2007 Report Share Posted January 26, 2007 Dear Lois I was tested by my doctor by using the stool sample and it showed that I did not have celiac sprue. Then I got my doctor to send me to Kirkland Clinic in Birmingham Al. and the first thing the did was an endoscopy and said I definately did have celiac sprue the same day of the test.The test was not a -problem either.About 45 minutes and I knew and was ready to go home.Only four days on a gluten free diet and I was so much better.After going to my gastroentologist for 6 years and complaining of constant diarrhea I had only had a colonoscopy done every year for 6 yrs.and told everything was fine .I'll never know why he never did an endoscopy all those years and I would not have had to suffer for so long/ Please request this test if you can as soon as -possible. You will be so glaqd you did. Lots of luck and May God bless you with your health, Love Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2007 Report Share Posted January 27, 2007 I just want to say thanks to those of you on this group who are sharing their story and personal journey with CD/gluten intolerance. I have a lot to think about. I ordered the test kit for my 7 yr. old. I would love to test my whole family, but it may take some time due to the cost. I know I have a few more emails to answer, and I am getting to it slowly. But thanks everyone for your encouraging words. There is a lot of wisdom on this list. Good luck to all of us who are still looking for answers. Lisa Wife to Chuck (12 yrs.) Homeschooling mom to Hunter (9), Chase (7), and Brooke (3 1/2). chugust ,_._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2007 Report Share Posted January 29, 2007 Hi Joan, Do you think your stool test was not done in the same way as www.enterolab.com does their testing? I haven't got a doctor, so I would go with enterolab instead. I have worried that even enterolab would show I didn't have celiac disease. For one thing I ate 100% raw from Feb.1st, 2005 to about May/June of 2006. I did sprout some gluten grains for " raw " , dehydrated breads app. 4 times during that year of being a raw foodist. Then, when I went back onto cooked I, of course ate breads and pasta. I was able to handle the cooked glutens at first, but that didn't last. Odd also, that I never had celiac symptoms before I went on the raw diet. I could also go on Dr. McDougall's Elimination diet, then test for gluten by eating bread after a week or so. http://www.nealhendrickson.com/mcdougall/021200puDietPF.htm . The Diet for the Desperate. Dr. McDougall says by going off gluten and if the person gets over their symptoms, then this is test in itself. That and the elimination diet. Well, glad you finally found out you have celiac disease. Only treatment is to stay off eating glutens. Good luck, Lois Joan Alexander <joaniegirl wrote: Dear Lois I was tested by my doctor by using the stool sample and it showed that I did not have celiac sprue. Then I got my doctor to send me to Kirkland Clinic in Birmingham Al. and the first thing the did was an endoscopy and said I definately did have celiac sprue the same day of the test.The test was not a -problem either.About 45 minutes and I knew and was ready to go home.Only four days on a gluten free diet and I was so much better.After going to my gastroentologist for 6 years and complaining of constant diarrhea I had only had a colonoscopy done every year for 6 yrs.and told everything was fine .I'll never know why he never did an endoscopy all those years and I would not have had to suffer for so long/ Please request this test if you can as soon as -possible. You will be so glaqd you did. Lots of luck and May God bless you with your health, Love Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Hi Karen and everyone, i am gluten free because i have terrible eczema (and allopecia totalis and a million food allergies). i was diagnosed from a traditional skin test (first time preformed on me, bad doctor). i gave up gluten and if i even have one bite of it, my skin freaks out and i'm in pain for days. but no one has ever tested me for coeliac. so it's like many things with me... not eating it doesn't necessarily make me better (i've never had many of the depression type side effects and i haven't had the awakening that many have after giving up gluten) ... but eating it makes me much worse. is there a way to have a gluten allergy without actually having CS? thanks! a , Tom and Karen Ekkens <tekkens wrote: > > Lois, > > Many members of my extended family, myself, and my children have tested with > enterolab. We have all been pleased with the ease of testing and the > professional > explanation of test results. It makes a lot of sense to me that the > antigliadin antibodies > would show up first in the intestine. > > My daughter tested positive via blood test, my son and I tested negative > via blood test. > But we all three tested positive through enterolab. Her numbers were > much higher, indicating > actual intestinal damage. I believe that the testing enterolab offers > is much more likely > to reveal the disease process early on, before we get to the big > malabsorption issues caused > by many years of continued exposure to gluten. (by which time our blood > tests would finally come > back positive.) > > The three of us have been gluten-free for about 16 months now. We are > experiencing > benefits we never imagined. My son is doing ever so much better in > school, my > daughter is experiencing improved energy, and I have noticed a huge > reduction in > musculoskeletal aches and pains. > > Hope this helps, > > Karen > > Lois Cole wrote: > > > > I am having a tough time right now. I've been off gluten for a week > > now. At a potluck on Sunday 14th I ate spaghetti, and Monday, 15th I > > ate chocolate cake. I got sick for 4 days. > > > > So, I'm wondering if I need to be tested to see if I have celiac > > disease and wondering how or if anyone else has and how? Does anyone > > know about www.enterolab.com where they use a stool sample? For blood > > tests I'd have to be eating gluten and I don't want to do that. > > > > Thanks, > > Lois > > > > > > > > > > <> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 YES, You can have food allergies without being with celiac disease. I have lots of food allergies and im not celiac that I know of. I've been on a wheat free/gluten free/caffienefree/artificial sweetner free plus other allergies since 1986. I've been dairy free since 2004. Carolyn Malone Lampasas,tx plasticbubblegirl <a_sirk wrote: Hi Karen and everyone, i am gluten free because i have terrible eczema (and allopecia totalis and a million food allergies). i was diagnosed from a traditional skin test (first time preformed on me, bad doctor). i gave up gluten and if i even have one bite of it, my skin freaks out and i'm in pain for days. but no one has ever tested me for coeliac. so it's like many things with me... not eating it doesn't necessarily make me better (i've never had many of the depression type side effects and i haven't had the awakening that many have after giving up gluten) ... but eating it makes me much worse. is there a way to have a gluten allergy without actually having CS? thanks! a , Tom and Karen Ekkens <tekkens wrote: > > Lois, > > Many members of my extended family, myself, and my children have tested with > enterolab. We have all been pleased with the ease of testing and the > professional > explanation of test results. It makes a lot of sense to me that the > antigliadin antibodies > would show up first in the intestine. > > My daughter tested positive via blood test, my son and I tested negative > via blood test. > But we all three tested positive through enterolab. Her numbers were > much higher, indicating > actual intestinal damage. I believe that the testing enterolab offers > is much more likely > to reveal the disease process early on, before we get to the big > malabsorption issues caused > by many years of continued exposure to gluten. (by which time our blood > tests would finally come > back positive.) > > The three of us have been gluten-free for about 16 months now. We are > experiencing > benefits we never imagined. My son is doing ever so much better in > school, my > daughter is experiencing improved energy, and I have noticed a huge > reduction in > musculoskeletal aches and pains. > > Hope this helps, > > Karen > > Lois Cole wrote: > > > > I am having a tough time right now. I've been off gluten for a week > > now. At a potluck on Sunday 14th I ate spaghetti, and Monday, 15th I > > ate chocolate cake. I got sick for 4 days. > > > > So, I'm wondering if I need to be tested to see if I have celiac > > disease and wondering how or if anyone else has and how? Does anyone > > know about www.enterolab.com where they use a stool sample? For blood > > tests I'd have to be eating gluten and I don't want to do that. > > > > Thanks, > > Lois > > > > > > > > > > <> > > > > Quote Link to comment Share on other sites More sharing options...
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