Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 (My response to April follows.) Just a thought, Lillyth, do you buy your rice from the bulk bins? If so, cross contamination in the bins could explain why processed rice products are OK but not what you make yourself. If you are buying packaged rice, you might consider checking to see if contamination is possible where it is packaged. I haven’t seen any research about grains in general being a problem, but I have heard of people being allergic to rice, so it could be a separate allergy or just an autoimmune response to grains in general due to the body having a hyper-sensitive autoimmune response to grain proteins as a result of the celiac disease. From: [mailto: ] On Behalf Of Lillyth Denaghy Keogh-Quillan Sent: Tuesday, August 25, 2009 2:28 PM Subject: RE: [ ] Refractory Celiac Disease I wonder… If 20% of all celiacs have a “celiac like response” to even gluten free oats – has there been any research into the possibility of refractory sprue simply being an inability to tolerate other grains as well? certainly have met other celiacs who cannot tolerate ANY grain, and I myself find that brown rice (whole, cooked brown rice) irritates my intestines. I have no “messy” symptoms to speak of, but it *does* cause me painful digestion. I can eat brown rice processed products with impunity. Does anyone know if there is any research into this? ----- " ahpril8 " <ahpril8@...> wrote: > Hi all- > I posted about hosting a san francisco dinner party group a few months ago and then fell off the planet. (sorry!) My mom was sick w/ Non-Hodgkins lymphoma and getting a bone marrow transplant (she doesn't have celiac, but lymphoma is an auto-immune disease too) and then i also started not feeling well. > I've been gluten free for a year and for 6 months felt great, better than i had in years, then started going downhill again. I dont feel as tired and worn down as i did before diagnosed, but I want to feel as good as I did a few months ago! > I started seeing a new doctor (Dr. Aron) and he want to do another endoscopy (first one was 13 months ago, showed Level IIIB subtotal atrophy on the Marsh scale ?) to see if I'm healing or if i have refractory celiac. He says I should have and endoscopy every year. I have heard many good things about Dr. Aron; someone recently told me that when she went to see him he answered all her questions willingly, but she did have to keep him on track and be persistent about getting all the questions in. > I didn't have much time with the doctor to ask all my questions so i thought i would pose them to you all before i started google-ing > What is Level IIIB subtotal atrophy on the Marsh scale? This means your villi, the fingerlike projections that cover the surface of the small intestine, are clearly flattened, in other words, signs of celiac disease are obvious. From Wikipedia: The classic pathology changes of coeliac disease in the small bowel are categorized by the " Marsh classification " :[31] § Marsh stage 0: normal mucosa § Marsh stage 1: increased number of intra-epithelial lymphocytes, usually exceeding 20 per 100 enterocytes § Marsh stage 2: proliferation of the crypts of Lieberkuhn § Marsh stage 3: partial or complete villous atrophy § Marsh stage 4: hypoplasia of the small bowel architecture From http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1770677 : stage 3 was split further into 3a, 3b, and 3c, characterised by mild villous flattening, marked villous flattening, and completely flat mucosa, respectively. > I know refractory celiac means i'm not feeling better but why? Refractory means your gut is not healing from the damage done to it when you were eating gluten. Before such a diagnosis is made, every effort should be made to make sure you are not getting accidental gluten. Basically, the damage done to the intestines is so severe that the body cannot repair it. This article has a good, detailed description of refractory sprue and a bit on how to treat it. http://www.celiac.com/articles/710/1/Refractory-Sprue-by--Melin-Rogovin-University-of-Chicago-Celiac-Disease-Program/Page1.html > what is refractory mean? > what do they do to fix it? Mostly steroids and immunosuppressants. > is it 'standard operating procedure' to have an endoscopy every year? I think this is an individual thing. If a second biopsy is done and shows normal (or close to normal) villi, I think more biopsies would be unnecessary unless further symptoms presented. If you continue to have symptoms, further biopsies may be indicated. Some doctors will do blood tests instead. I doubt he meant you to have endoscopy done every year forever, probably just until you are clearly healed. Just a note about symptoms returning. I have noticed that many people will feel better after starting a GF diet, then after a few months they start to experience a renewal of symptoms and a much stronger sensitivity to gluten exposure. My understanding of this is that when you remove gluten from the diet, the antibodies don’t have anything to do, so they “rest up”, so to speak; as long as gluten is completely excluded from the diet, the antibodies will begin to fade; however, if gluten is ingested the antibodies will remain active, and, rested and ready to go, they are on for the attack. Because the antibodies are stronger, even the tiniest amount of gluten will activate the immune response. Most people I have seen this happen to will improve over time (2-3 years). Things that can help are a very nutritious, easy-to-digest diet, rest, and reduction of stress. For you, April, I note that you have been under stress while dealing with your mother’s illness; it is possible that this stress has impeded your healing and caused your renewed symptoms. Determining whether you have refractory sprue or not will take Dr. ’s expertise, I am just giving you a few things to consider and discuss with him. Let me know if you need futher clarification. Pam Newbury Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 No, I don’t buy anything from bulk bins. I’ve had brown rice from multiple sources and had it hurt my tummy. No celiac symptoms, just tummy/intestinal pain. (Both brown rice I have cooked for myself as well as brown rice made by other people.) It was just an idea – if people keep getting sick, and some people can’t tolerate other grains – maybe that is responsible for the refracotory? I was just curious if anyone had done any research into that, especially as Dr. Greene (at the 2006 Stanford Celiac Conference) referred to grains as a “spectrum” saying that some folks can’t tolerate other stuff too… From: [mailto: ] On Behalf Of Pam Newbury Sent: Wednesday, August 26, 2009 11:39 PM Subject: [ ] Refractory Celiac Disease (My response to April follows.) Just a thought, Lillyth, do you buy your rice from the bulk bins? If so, cross contamination in the bins could explain why processed rice products are OK but not what you make yourself. If you are buying packaged rice, you might consider checking to see if contamination is possible where it is packaged. I haven’t seen any research about grains in general being a problem, but I have heard of people being allergic to rice, so it could be a separate allergy or just an autoimmune response to grains in general due to the body having a hyper-sensitive autoimmune response to grain proteins as a result of the celiac disease. From: [mailto: ] On Behalf Of Lillyth Denaghy Keogh-Quillan Sent: Tuesday, August 25, 2009 2:28 PM Subject: RE: [ ] Refractory Celiac Disease I wonder… If 20% of all celiacs have a “celiac like response” to even gluten free oats – has there been any research into the possibility of refractory sprue simply being an inability to tolerate other grains as well? certainly have met other celiacs who cannot tolerate ANY grain, and I myself find that brown rice (whole, cooked brown rice) irritates my intestines. I have no “messy” symptoms to speak of, but it *does* cause me painful digestion. I can eat brown rice processed products with impunity. Does anyone know if there is any research into this? ----- " ahpril8 " <ahpril8hotmail> wrote: > Hi all- > I posted about hosting a san francisco dinner party group a few months ago and then fell off the planet. (sorry!) My mom was sick w/ Non-Hodgkins lymphoma and getting a bone marrow transplant (she doesn't have celiac, but lymphoma is an auto-immune disease too) and then i also started not feeling well. > I've been gluten free for a year and for 6 months felt great, better than i had in years, then started going downhill again. I dont feel as tired and worn down as i did before diagnosed, but I want to feel as good as I did a few months ago! > I started seeing a new doctor (Dr. Aron) and he want to do another endoscopy (first one was 13 months ago, showed Level IIIB subtotal atrophy on the Marsh scale ?) to see if I'm healing or if i have refractory celiac. He says I should have and endoscopy every year. I have heard many good things about Dr. Aron; someone recently told me that when she went to see him he answered all her questions willingly, but she did have to keep him on track and be persistent about getting all the questions in. > I didn't have much time with the doctor to ask all my questions so i thought i would pose them to you all before i started google-ing > What is Level IIIB subtotal atrophy on the Marsh scale? This means your villi, the fingerlike projections that cover the surface of the small intestine, are clearly flattened, in other words, signs of celiac disease are obvious. From Wikipedia: The classic pathology changes of coeliac disease in the small bowel are categorized by the " Marsh classification " :[31] § Marsh stage 0: normal mucosa § Marsh stage 1: increased number of intra-epithelial lymphocytes, usually exceeding 20 per 100 enterocytes § Marsh stage 2: proliferation of the crypts of Lieberkuhn § Marsh stage 3: partial or complete villous atrophy § Marsh stage 4: hypoplasia of the small bowel architecture From http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1770677 : stage 3 was split further into 3a, 3b, and 3c, characterised by mild villous flattening, marked villous flattening, and completely flat mucosa, respectively. > I know refractory celiac means i'm not feeling better but why? Refractory means your gut is not healing from the damage done to it when you were eating gluten. Before such a diagnosis is made, every effort should be made to make sure you are not getting accidental gluten. Basically, the damage done to the intestines is so severe that the body cannot repair it. This article has a good, detailed description of refractory sprue and a bit on how to treat it. http://www.celiac.com/articles/710/1/Refractory-Sprue-by--Melin-Rogovin-University-of-Chicago-Celiac-Disease-Program/Page1.html > what is refractory mean? > what do they do to fix it? Mostly steroids and immunosuppressants. > is it 'standard operating procedure' to have an endoscopy every year? I think this is an individual thing. If a second biopsy is done and shows normal (or close to normal) villi, I think more biopsies would be unnecessary unless further symptoms presented. If you continue to have symptoms, further biopsies may be indicated. Some doctors will do blood tests instead. I doubt he meant you to have endoscopy done every year forever, probably just until you are clearly healed. Just a note about symptoms returning. I have noticed that many people will feel better after starting a GF diet, then after a few months they start to experience a renewal of symptoms and a much stronger sensitivity to gluten exposure. My understanding of this is that when you remove gluten from the diet, the antibodies don’t have anything to do, so they “rest up”, so to speak; as long as gluten is completely excluded from the diet, the antibodies will begin to fade; however, if gluten is ingested the antibodies will remain active, and, rested and ready to go, they are on for the attack. Because the antibodies are stronger, even the tiniest amount of gluten will activate the immune response. Most people I have seen this happen to will improve over time (2-3 years). Things that can help are a very nutritious, easy-to-digest diet, rest, and reduction of stress. For you, April, I note that you have been under stress while dealing with your mother’s illness; it is possible that this stress has impeded your healing and caused your renewed symptoms. Determining whether you have refractory sprue or not will take Dr. ’s expertise, I am just giving you a few things to consider and discuss with him. Let me know if you need futher clarification. Pam Newbury Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 thanks everyone for your help and article links. from my research and even in the refractory celiac article Pam sent, untreated celiac can possible lead to 'T-cell' lymphoma. My mom has 'B-cell' Lymphoma. She also had an endoscopy and colonoscopy to check for tumor damage, and they didn't notice celiac damage. maybe years from now the scientists will figure out a link. (?) i have been stressed out, i have been eating oatmeal (whole foods oatmeal says they keep it separate from wheat in the factory, but who knows) I also switched jobs 8 months ago and thus had to switch doctors. I've never knowingly cheated, but i was eating some processed foods. maybe i have been getting gluten. its so hard to find time to cook every meal myself (as i'm sure everyone else on this list has found as well) anyway, i started keeping a food log again and made an appt. with a nutritionist. I have the endoscopy next week and I'll follow the doctor's orders. hopefully i'll start feeling better soon. > ----- " ahpril8 " <ahpril8@...> wrote: > > > > Hi all- > > I posted about hosting a san francisco dinner party group a few months ago > and then fell off the planet. (sorry!) My mom was sick w/ Non-Hodgkins > lymphoma and getting a bone marrow transplant (she doesn't have celiac, but > lymphoma is an auto-immune disease too) and then i also started not feeling > well. > > I've been gluten free for a year and for 6 months felt great, better than > i had in years, then started going downhill again. I dont feel as tired and > worn down as i did before diagnosed, but I want to feel as good as I did a > few months ago! > > I started seeing a new doctor (Dr. Aron) and he want to do another > endoscopy (first one was 13 months ago, showed Level IIIB subtotal atrophy > on the Marsh scale ?) to see if I'm healing or if i have refractory celiac. > He says I should have and endoscopy every year. I have heard many good > things about Dr. Aron; someone recently told me that when she went to see > him he answered all her questions willingly, but she did have to keep him on > track and be persistent about getting all the questions in. > > I didn't have much time with the doctor to ask all my questions so i > thought i would pose them to you all before i started google-ing > > What is Level IIIB subtotal atrophy on the Marsh scale? > > This means your villi, the fingerlike projections that cover the surface of > the small intestine, are clearly flattened, in other words, signs of celiac > disease are obvious. > > From Wikipedia: > > The classic pathology changes of coeliac disease in the small bowel are > categorized by the " Marsh classification " : > <http://en.wikipedia.org/wiki/Coeliac_disease#cite_note-30> [31] > > § Marsh stage 0: normal mucosa > > § Marsh stage 1: increased number of intra-epithelial > <http://en.wikipedia.org/wiki/Lymphocytes> lymphocytes, usually exceeding 20 > per 100 <http://en.wikipedia.org/wiki/Enterocyte> enterocytes > > § Marsh stage 2: proliferation of the > <http://en.wikipedia.org/wiki/Crypts_of_Lieberkuhn> crypts of Lieberkuhn > > § Marsh stage 3: partial or complete > <http://en.wikipedia.org/wiki/Intestinal_villus> villous > <http://en.wikipedia.org/wiki/Atrophy> atrophy > > § Marsh stage 4: <http://en.wikipedia.org/wiki/Hypoplasia> hypoplasia of > the <http://en.wikipedia.org/wiki/Small_bowel> small bowel architecture > > From http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1770677 : > > stage 3 was split further into 3a, 3b, and 3c, characterised by mild villous > flattening, marked villous flattening, and completely flat mucosa, > respectively. > > > > I know refractory celiac means i'm not feeling better but why? > > Refractory means your gut is not healing from the damage done to it when you > were eating gluten. Before such a diagnosis is made, every effort should be > made to make sure you are not getting accidental gluten. Basically, the > damage done to the intestines is so severe that the body cannot repair it. > > This article has a good, detailed description of refractory sprue and a bit > on how to treat it. > > http://www.celiac.com/articles/710/1/Refractory-Sprue-by--Melin-Rogo > vin-University-of-Chicago-Celiac-Disease-Program/Page1.html > > > > what is refractory mean? > > what do they do to fix it? Mostly steroids and immunosuppressants. > > is it 'standard operating procedure' to have an endoscopy every year? > > I think this is an individual thing. If a second biopsy is done and shows > normal (or close to normal) villi, I think more biopsies would be > unnecessary unless further symptoms presented. If you continue to have > symptoms, further biopsies may be indicated. Some doctors will do blood > tests instead. I doubt he meant you to have endoscopy done every year > forever, probably just until you are clearly healed. > > Just a note about symptoms returning. I have noticed that many people will > feel better after starting a GF diet, then after a few months they start to > experience a renewal of symptoms and a much stronger sensitivity to gluten > exposure. My understanding of this is that when you remove gluten from the > diet, the antibodies don't have anything to do, so they " rest up " , so to > speak; as long as gluten is completely excluded from the diet, the > antibodies will begin to fade; however, if gluten is ingested the antibodies > will remain active, and, rested and ready to go, they are on for the attack. > Because the antibodies are stronger, even the tiniest amount of gluten will > activate the immune response. Most people I have seen this happen to will > improve over time (2-3 years). Things that can help are a very nutritious, > easy-to-digest diet, rest, and reduction of stress. For you, April, I note > that you have been under stress while dealing with your mother's illness; it > is possible that this stress has impeded your healing and caused your > renewed symptoms. > > Determining whether you have refractory sprue or not will take Dr. 's > expertise, I am just giving you a few things to consider and discuss with > him. > > Let me know if you need futher clarification. > > Pam Newbury > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2009 Report Share Posted August 28, 2009 > . .. > i have been stressed out, i have been eating oatmeal (whole foods oatmeal says they keep it separate from wheat in the factory, but who knows) I've always heard that the unique CC issue for oats starts w/ the common oats/wheat crop rotation, and what's called " volunteer wheat " . Then there's the shared equipment in harvest, transport & storage. The greatest factory practices in the world don't make oats gf. I don't eat oats, so don't pay a *lot* of attn but hear that oats like McCann's get called GF because in Ireland they weren't traditionally crop-rotated w/ wheat. So I'd say switch to GF oats and see what happens. I think there are at least 3 or 4 brands - - - anyone?? Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2009 Report Share Posted August 29, 2009 According to Dr. Aron's own website, MIII damage can take up to 2 years to heal. Maybe your healing has just been disrupted by the stressful situation with your mom? And/or something glutenous has slipped into your diet. I now notice that when I get accidentally glutened (I've been g-f for a year), I am *really* sick for a solid week (it feels like stomach flu, PMS, and a hangover all rolled into 1 -- joy). I have found that I just can't eat out at all anymore & I keep the processed foods to a minimum & only if they clearly state gluten-free. So, maybe there is something (like the oatmeal?) that you are now eating regularly that is keeping you in a glutened state. Hope you feel better soon! Keep us posted! Lynn > I started seeing a new doctor (Dr. Aron) and he want to do another endoscopy (first one was 13 months ago, showed Level IIIB subtotal atrophy on the Marsh scale ?) to see if I'm healing or if i have refractory celiac. He says I should have and endoscopy every year. > I didn't have much time with the doctor to ask all my questions so i thought i would pose them to you all before i started google-ing > > What is Level IIIB subtotal atrophy on the Marsh scale? > I know refractory celiac means i'm not feeling better but why? > what is refractory mean? > what do they do to fix it? > is it 'standard operating procedure' to have an endoscopy every year? > > ok thanks! > /april > > p.s. I still hope to start a san francisco dinner pary group when i'm feeling better... > Quote Link to comment Share on other sites More sharing options...
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