Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 boy, I sure hope it's not celiac...that's the one thing I'm hoping these enzymes help us with!!! how does one get that tested? lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 boy, I sure hope it's not celiac...that's the one thing I'm hoping these enzymes help us with!!! how does one get that tested? lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Lynn, If you are asking how you get tested for celiac disease, your doctor should be able to do that or refer you. > boy, I sure hope it's not celiac...that's the one thing I'm hoping these > enzymes help us with!!! how does one get that tested? > > lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 It is very complicated, and there is some disagreement in the medical community over what is required for a definitive diagnosis. My wife is undergoing the testing now. There is a blood test, which can help spot some things that might indicate celiac disease. But the blood test is not a definitive indicator. My wife has had a colonoscopy, to rule out other causes for her diarrhea. This Friday, she is having an upper endoscopy and another blood test. She has had to stop her GF diet for the last 3 weeks so that the blood test and the upper endoscopy will show " valid " results. (We have had a lot of fun going off the GF diet... wait till she see what she's getting tonight!) During the upper endoscopy, they will take sampless of the villi from her small intestine. If those samples show damage from celiac disease and if the blood test confirms it, they will make an official diagnosis. The disagreement in the medical community surrounds whether the endoscopy is necessary. My wife's diarrhea stopped when she went GF, and the celiac blood test was positive (mixed positive, actually, since the test looks for about 5 different things). This would be enough for some doctors to make the diagnosis, I think. -eric [ ] Re: celiac Lynn, If you are asking how you get tested for celiac disease, your doctor should be able to do that or refer you. > boy, I sure hope it's not celiac...that's the one thing I'm hoping these > enzymes help us with!!! how does one get that tested? > > lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 yeah, I just started talking with my husband about going into a more in depth evaluation to see if there is anyhting more physiological that we should be looking at...thanks for your answers... lynn [ ] Re: celiac > Lynn, > > If you are asking how you get tested for celiac disease, your doctor > should be able to do that or refer you. > > > > > > boy, I sure hope it's not celiac...that's the one thing I'm hoping > these > > enzymes help us with!!! how does one get that tested? > > > > lynn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 You can look up www.celiac.org or www.finerhealth.com for more info on celiac disease and how to test for it. in IL Re: [ ] celiac boy, I sure hope it's not celiac...that's the one thing I'm hoping these enzymes help us with!!! how does one get that tested? lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 --- In @y..., " Dan & " <creativespark@e...> wrote: > > Every time someone posts the site re: celiac, I look at the pictures of DH > and say, " Nope, that's not what 's rash looks like... " But now > folks seem to be saying that symptoms vary... My rash when I was younger looked very much like a few of the photos. My son's rash now when he eats gluten looks very much like a few of the photos, but different photos than my rash looked. Now, my rash does not look like any of the photos. And my son's rash looks like the photos but does not itch. So it is confusing to me also, but the other symptoms are very clear to me. > I guess my question is, do we need to do more testing? If you would feel better doing more testing, then I think you should pursue it. Otherwise, you can just do what I am doing, assume your son is celiac, and treat him as such. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 2001 Report Share Posted October 31, 2001 From what I read the other day, the tests are not always indicative of celiac because a biopsy may be taken from part of the intestines that are not showing damage or lesions at the moment. The damage may be present in other areas not hit. The biopsy is a very good test, but not absolute. The recommendation was to try the gluten free diet for up to 6 weeks and see if you see improvements. Then reintroduce gluten and see if there is regression. If so, then stick to a gluten- free diet. One area of research is looking for a antigen test to definitely test for celiac. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 > Re:celiac > > > >Heidi (and/or some other expert). someone sent me this info when >i posted that i was going gluten free as an experiment to see if i >am gluten intolerant. this is what she replied. it seems to >differ from what i have been reading in this group: thanks, diana > >She wrote: > >The only time that gluten is not good for anyone is if they >have Celiac disease. > >Also, with Celiac disease the person is gluten intolerant >and if you are concerned about allergies to wheat and rye >(example) you need to find out for sure if you have Celiac. > >Celiac disease is a very serious issue and needs to be >diagnosed by a dr not by experimenting long term to see if that's >your problem. > >Also, most healthy things have gluten in it but like I say the >only time it's not good for anyone is if they have Celiac >Disease. > , I'm no expert, but I can assure you this is total misinformation. Celiac is just *one* form of gluten intolerance, albeit the most severe. You can most certainly be gluten intolerant but not have Celiac Sprue, yet suffer quite a bit of damage from gluten. And " most healthy things have gluten in it " ?????? Sheesh....this person really has no clue! Suze Fisher Lapdog Design, Inc. Web Design & Development http://members.bellatlantic.net/~vze3shjg Weston A. Price Foundation Chapter Leader, Mid Coast Maine http://www.westonaprice.org ---------------------------- " The diet-heart idea (the idea that saturated fats and cholesterol cause heart disease) is the greatest scientific deception of our times. " -- Mann, MD, former Professor of Medicine and Biochemistry at Vanderbilt University, Tennessee; heart disease researcher. The International Network of Cholesterol Skeptics <http://www.thincs.org> ---------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 At 07:13 AM 5/26/2004, you wrote: >>Heidi (and/or some other expert). someone sent me this info when >>i posted that i was going gluten free as an experiment to see if i >>am gluten intolerant. this is what she replied. it seems to >>differ from what i have been reading in this group: thanks, diana >> I'm with Katja. What the person posted is " the party line " (along with the food pyramid, avoid fats etc.) but not at all what the researchers think. " Celiac " is the " end game " like grangrene is to diabetes ... it's nice to avoid that much damage if possible. Have her read " Before the Villi are gone " (link below). Going GF doesn't always show whether or not a person is gluten intolerant though ... there really is no foolproof test at this point (tho Dr. Fine's test comes close). A lot of people do feel better when they go GF, which is great ... me I felt worse, but then got slowly better and got REALLY sick when I tried to eat gluten again. YMMV! -- Heidi Jean http://www.enterolab.com/Essay/ Even though recent research has shown that celiac disease is much more common than previously suspected, affecting 1 in 100-200 Americans and Europeans, past and emerging evidence indicates that it accounts for only a small portion of the broader gluten sensitive clinical spectrum (often referred to as the " Tip of the Gluten Sensitive Iceberg " ). With better understanding of how gluten triggers immune and autoimmune reactions in the body under the control of various genes, and advancing techniques of detecting these reactions, it is becoming apparent that the majority of the gluten sensitive population (the submerged “mass of the iceberg”) do not manifest villous atrophy in its classic, complete form and therefore do not have celiac disease. In these non-celiac, gluten sensitive individuals, the brunt of the immune reaction either affects the function of the intestine, causing symptoms without structural damage, affects other tissues of the body (and virtually all tissues have been affected in different individuals), or both. This is important because the commonly used diagnostic tests of clinically important gluten sensitivity (blood tests for certain antibodies and intestinal biopsies) are only positive when villous atrophy of the small intestine is present. But if only a small minority of gluten sensitive individuals actually develop celiac disease, the majority, who have not yet or may never develop villous atrophy, with or without symptoms, can remain undiagnosed and untreated for years. This can result in significant immune and nutritional consequences, many of which are irreversible even after treatment with a gluten-free diet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2004 Report Share Posted May 26, 2004 , I went gluten free as an experiment and the improved results to my health proved it right. Wheather I have or had celiac, don't know or need someone to tell me so. Leaky gut, IBD, multiple food,environmental allergies, deficiencies due to malabsorption and incorrect for me prior diet seems a more accurate diagnosis. Other factors that put experimentation ahead of getting a diagnosis first as a you have to go gluten free is no insurance, the general medical world separate of specialists who'd rather give a prescription than listen to a patient wanting a specific test, the last mainstream doctor I went to 15 years ago who could find nothing wrong even though I had severe gastrointestinal issues and money is better spent on the quality foods that do make me feel well. Going gluten free looks like one of the few things in life you can actually do if it makes you feel good and not suffer any consequences of having made a wrong choice later. Choosing to do it yourself from research and you knowing how you feel without being told you must to me puts you more than halfway there. Wanita > Heidi (and/or some other expert). someone sent me this info when i posted that i was going gluten free as an experiment to see if i am gluten intolerant. this is what she replied. it seems to differ from what i have been reading in this group: thanks, diana > > She wrote: > > The only time that gluten is not good for anyone is if they > have Celiac disease. > > Also, with Celiac disease the person is gluten intolerant > and if you are concerned about allergies to wheat and rye > (example) you need to find out for sure if you have Celiac. > > Celiac disease is a very serious issue and needs to be > diagnosed by a dr not by experimenting long term to see if that's > your problem. > > Also, most healthy things have gluten in it but like I say the > only time it's not good for anyone is if they have Celiac > Disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2004 Report Share Posted July 10, 2004 If someone with celiac disease or has any glutan intolerance, their symptoms will always persist until they remove glutan from their diet !!!!! Check this page out for some help http://www.gflinks.com/ For those with MS , I'd advice them to save this page too as glutan is best avoided in MS Rep. Ireland > i have a question about celiac symptoms. > some one with celiac ingests a gluyein diet - how long > will the symptoms persist - like diarrhea e.t.c. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 Thanks Sue. On Tue, Nov 11, 2008 at 5:05 PM, Sue <marysue@...> wrote: > Heidi, > > I'm sorry that you have another disease to contend with. Actually, the > gluten-free diet would be good for your diabetes, since grains raise > our blood glucose. I don't know what the IC diet is. > > Since I have diabetes, I eat very few grain products. I eat lots of > vegetables, especially green ones, and lots of salads, too. Meat, > cheese, and other forms of protein are okay on a diabetic diet. I try > not to eat anything white because white foods are all high carb except > for cauliflower, LOL. > > You can probably find substitutes for gluten, for example, soy flour, > which is relatively low carb. > > Good luck with this new challenge! > > Sue > > On Tuesday, November 11, 2008, at 04:56 PM, Heidi Mendelsohn wrote: > > > It seems to me that between the Gluten > > free diet, the IC diet and the Diabetic diet I can't eat much except > > the box > > the food comes in but only if it has not contained something that has > > gluten. LOL > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 Heidi, I have two friends with Celiac, both eat quite well. I lived at one of their houses after surgery, and except for craving bread, I would not have noticed any changes to what I normally eat. I live in Southern California so your area will be different, we even have restaurants that have menus with celiac items. With the advent of Atkin's diet, you can even eat at fast food places with celiac. One of the ladies was two young children, both inherited celias. She had them tested when they turned One, they just will not know any other way of eating. She has also done a lot of research on Celiac. There is a strong genetic link. Apparently celiac predominates in Northern Italians, and Scandanavians (she is of Finnish descent). There are also other cultural groups with a lot of Celiac. So it might be interesting for you to do a bit of research in your family to determine the nationalities of the people in your family with Celiac. A group of my friends get together for Thanksgiving and we have three different types of stuffing to cover all the different types of diet needs. lol About not having grains, what you are actually avoiding is grains that make gluten. So you can still have rice, millet, sesame, etc. But you still have to watch out for 'gluten-free' mixes, and ready made food items as they can have some of the grains you should not eat in them still. You will become a champion label reader! Would you believe soy sauce is mainly made of wheat! Luckily, there are wheat-free soy sauces. Ask your doctor to refer you to a dietitian or nutritionist to help you with changing to a gluten free diet. Is there a Whole Foods market near you? They mark the items they carry as okay for a Celiac diet, Vegitarion, etc. It makes it much easier to find things okay for your diet. There are also a couple of Celiac groups on groups to help you. The endoscope procedure is to determine the amount of damage to your intestines. I believe that most of the time a small biopsy will be taken, but it will not cause you any pain. Good luck, and now that you know about the celiac you ARE going to feel better. You might want to set your husband to the Celiac contest of making the best tasting Pizza crust without wheat or gluten. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 2008 Report Share Posted November 11, 2008 Thanks On Tue, Nov 11, 2008 at 6:01 PM, cynthiadew1 <cynthiadew1@...> wrote: > > Heidi, > > I have two friends with Celiac, both eat quite well. I lived at one > of their houses after surgery, and except for craving bread, I would > not have noticed any changes to what I normally eat. I live in > Southern California so your area will be different, we even have > restaurants that have menus with celiac items. With the advent of > Atkin's diet, you can even eat at fast food places with celiac. One > of the ladies was two young children, both inherited celias. She had > them tested when they turned One, they just will not know any other > way of eating. She has also done a lot of research on Celiac. There > is a strong genetic link. Apparently celiac predominates in Northern > Italians, and Scandanavians (she is of Finnish descent). There are > also other cultural groups with a lot of Celiac. So it might be > interesting for you to do a bit of research in your family to > determine the nationalities of the people in your family with > Celiac. A group of my friends get together for Thanksgiving and we > have three different types of stuffing to cover all the different > types of diet needs. lol > > About not having grains, what you are actually avoiding is grains > that make gluten. So you can still have rice, millet, sesame, etc. > But you still have to watch out for 'gluten-free' mixes, and ready > made food items as they can have some of the grains you should not > eat in them still. You will become a champion label reader! Would > you believe soy sauce is mainly made of wheat! Luckily, there are > wheat-free soy sauces. Ask your doctor to refer you to a dietitian > or nutritionist to help you with changing to a gluten free diet. Is > there a Whole Foods market near you? They mark the items they carry > as okay for a Celiac diet, Vegitarion, etc. It makes it much easier > to find things okay for your diet. There are also a couple of Celiac > groups on groups to help you. > > The endoscope procedure is to determine the amount of damage to your > intestines. I believe that most of the time a small biopsy will be > taken, but it will not cause you any pain. > > Good luck, and now that you know about the celiac you ARE going to > feel better. You might want to set your husband to the Celiac > contest of making the best tasting Pizza crust without wheat or > gluten. > > > > > Quote Link to comment Share on other sites More sharing options...
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