Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 http://celiacdisease.about.com/od/symptomsofceliacdisease/a/refractorysprue.htm The link is to some more information. In a previous discussion I had discussed having iron deficiency anemia which was not improving with treatment and all common factors had been eliminated as a cause. My GI doctor has identified a rare form of celiac called refractory disease, in which despite the strict gluten free diet I will continue to have some issues. I have constant bone pain which has been linked to this condition as there is no other explanation for it. I wanted to share this with the group in case there is someone out there who is continuing to have pain or health issues that won't go away, so you can discuss this with your doctor and take the necessary steps to keep yourself as healthy as possible. This is very rare but very serious! I sincerely hope that none of you have this. Just passing along the info for whatever good it may do! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 There's a gastroenterologist in Atlanta---Harry Delcher---who believes that avoiding gluten doesn't go far enough for many people with gluten intolerance. He recommends cutting out a variety of other foods in addition to the glutenous ones. Harry's the person who started me on this gluten-free, allergen-free path by telling me, " I can tell by looking at you that you have gluten intolerance " ----this was at our church, not at his office! He turned out to be right, of course. Anyway, if you are really ill still after cutting out gluten, it might be worth getting in touch with him. He also has a partner who is a dietician, though I think they're both pretty expensive to see. Sally On Fri, Feb 20, 2009 at 12:08 AM, catchadream04 <recyclednewwrote: > > http://celiacdisease.about.com/od/symptomsofceliacdisease/a/refractorysprue.htm > > The link is to some more information. In a previous discussion I had > discussed having iron deficiency anemia which was not improving with > treatment and all common factors had been eliminated as a cause. My GI > doctor has identified a rare form of celiac called refractory disease, > in which despite the strict gluten free diet I will continue to have > some issues. I have constant bone pain which has been linked to this > condition as there is no other explanation for it. I wanted to share > this with the group in case there is someone out there who is > continuing to have pain or health issues that won't go away, so you > can discuss this with your doctor and take the necessary steps to keep > yourself as healthy as possible. This is very rare but very serious! I > sincerely hope that none of you have this. Just passing along the info > for whatever good it may do! > > > -- " This isn't a matter of Republican and Democrat. It's not liberal. It's not conservative. It's simply common sense. This is a national emergency. . . . You have to be honest about the way the biosphere works, and we have to move this country very rapidly in a different direction. " --John Orr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Yep. It's completely possible to still be miserable despite a strict (very and I-do-mean-very strict)gluten free diet. yep. iron anemia, b-12 anemia, folic acid anemia, pain, numbness, brain fog... short term memory loss.. any and all of that it's all celiac. yep. Laurie , " catchadream04 " <recyclednew wrote: > > http://celiacdisease.about.com/od/symptomsofceliacdisease/a/refractory sprue.htm > > The link is to some more information. In a previous discussion I had > discussed having iron deficiency anemia which was not improving with > treatment and all common factors had been eliminated as a cause. My GI > doctor has identified a rare form of celiac called refractory disease, > in which despite the strict gluten free diet I will continue to have > some issues. I have constant bone pain which has been linked to this > condition as there is no other explanation for it. I wanted to share > this with the group in case there is someone out there who is > continuing to have pain or health issues that won't go away, so you > can discuss this with your doctor and take the necessary steps to keep > yourself as healthy as possible. This is very rare but very serious! I > sincerely hope that none of you have this. Just passing along the info > for whatever good it may do! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 I'm curious - did your doctor try an elimination diet with you? Also, did he ever suggest trying glutamine as a supplement? Thanks - Amanda , " catchadream04 " <recyclednew wrote: > > http://celiacdisease.about.com/od/symptomsofceliacdisease/a/refractorysprue.htm > > The link is to some more information. In a previous discussion I had > discussed having iron deficiency anemia which was not improving with > treatment and all common factors had been eliminated as a cause. My GI > doctor has identified a rare form of celiac called refractory disease, > in which despite the strict gluten free diet I will continue to have > some issues. I have constant bone pain which has been linked to this > condition as there is no other explanation for it. I wanted to share > this with the group in case there is someone out there who is > continuing to have pain or health issues that won't go away, so you > can discuss this with your doctor and take the necessary steps to keep > yourself as healthy as possible. This is very rare but very serious! I > sincerely hope that none of you have this. Just passing along the info > for whatever good it may do! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Laurie Have you looked into heavy metal toxicity? Pain, numbness or tingling, brain fog, memory loss are also signs of this and many of us could have it from vaccines, mercury almalgam fillings, etc. BL On Fri, Feb 20, 2009 at 9:17 AM, Laurie <lau123 wrote: > Yep. It's completely possible to still be miserable despite a strict > (very and I-do-mean-very strict)gluten free diet. > > yep. iron anemia, b-12 anemia, folic acid anemia, pain, numbness, > brain fog... short term memory loss.. any and all of that it's all > celiac. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Hi catchadream, Yes, I know what you are talking about as this is something that I too have :-( A great place to start with this much more challenging form of celiac is the SCD --Elaine Gottschall wrote a very helpful book called Breaking the Vicious Cycle. I have also found that probiotics, prebiotics, digestive enyzymes and foods super high in omega 3's help (think of soaked chia seed as the vegan version of fish oil) to get the gut back on track. Good luck and let me know if I can help you with more information Elana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 Lately I've been eating naturally fermented pickles (the brined kind that have to stay refrigerated, not vinegar-based pickles) to get the bacteria from them in lieu of taking a probiotic pill, and I feel like it's working well. You can make the probiotic pickles at home much more cheaply than you can buy probiotic pills, too. It's funny to me that up until a couple of years ago, I thought the idea of probiotics was absurd, and I now I would swear by them. Oh, how things change. . . . Sally On Fri, Feb 20, 2009 at 1:43 PM, Elana Amsterdam <eawrote: > Hi catchadream, > > Yes, I know what you are talking about as this is something that I too > have :-( > > A great place to start with this much more challenging form of celiac > is the SCD --Elaine Gottschall wrote a very helpful book called > Breaking the Vicious Cycle. > > I have also found that probiotics, prebiotics, digestive enyzymes and > foods super high in omega 3's help (think of soaked chia seed as the > vegan version of fish oil) to get the gut back on track. > > Good luck and let me know if I can help you with more information > > Elana > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2009 Report Share Posted February 20, 2009 BL: Thanks, yes. Most of the brain fog is gone as long as I am grain free. Just be prepared to die laughing if you watch me try to count to 100 in groups of 10's, can't for the life of me remember if I already got to 60, or was thinking ahead that this group (of counted items) is going to be 60. So of course I have to start over. Again. If it wasn't so frustrating .. it really would be funny. I did get better (somewhat) when I had alamgam fillings replaced, but I still have a couple, just need a new latex free dentist. I have a doctor in Chicago that is sure I am metal toxic too... but.. slowly and surely I am figuring this out. I have reduced metal exposure to almost zero... but the lingering issues may never go away. Mostly, it's how to function on a daily basis. I have " had the flu " for a solid year ,minus four GREAT days in November and then a couple days in February. I randomly get a GREAT (read normal) day. The doctors ARE paying attention, sort of. But as long as I am ambulatory and can breathe on my own, they don't seem to be looking for anything. The refractory sprue is maybe the least of my problems. LOL I think I am going to hire a naturopath to look at the WHOLE picture, not individual symptoms. Sort of tired of that circus. Laurie , Brenda-Lee Olson <shalomaleichemacademy wrote: > > Laurie > > Have you looked into heavy metal toxicity? Pain, numbness or tingling, > brain fog, memory loss are also signs of this and many of us could have it > from vaccines, mercury almalgam fillings, etc. > > BL > > On Fri, Feb 20, 2009 at 9:17 AM, Laurie <lau123 wrote: > > > Yep. It's completely possible to still be miserable despite a strict > > (very and I-do-mean-very strict)gluten free diet. > > > > yep. iron anemia, b-12 anemia, folic acid anemia, pain, numbness, > > brain fog... short term memory loss.. any and all of that it's all > > celiac. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2009 Report Share Posted February 21, 2009 Sounds like a plan to see either a holistic naturopath or a clinical ecologist (a medical doctor who specializes in environmental medicine and who considers the whole person not just the symptoms of individual illnesses). That's what I need too, but as my grandma used to say, they are scarce as hen's teeth. BL On Fri, Feb 20, 2009 at 11:33 AM, Laurie <lau123 wrote: > Mostly, it's how to function on a daily basis. I have " had the flu " for > a solid year ,minus four GREAT days in November and then a couple days in > February. I randomly get a GREAT (read normal) day. The > doctors ARE paying attention, sort of. But as long as I am ambulatory and > can breathe on my own, they don't seem to be looking for anything. > > The refractory sprue is maybe the least of my problems. LOL > > I think I am going to hire a naturopath to look at the WHOLE picture, not > individual symptoms. Sort of tired of that circus. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2009 Report Share Posted February 23, 2009 Thanks everyone for all the thoughts, suggestions, support, ect. My internet has been down so sorry it took so long to respond back. I am and have been dairy free and egg free as well. Totally allergen free for over 2 years after being diagnoses with chronic pancreatitis at the age of 22. This was actually when this whole gluten free journey began. I was on a clear liquid diet for about a month because of my pancreas. When I was sent home I was told to maintain the liquid diet for a week or two, depending on how I felt and then gradually start solids by eating some toast or crackers. Well, every time I tried to eat some toast I vomited, so I went back to the liquids, which consisted of applesauce and vegetable broth in addition to water and gatorade (which kept my electrolytes in check). Finally a friend of my suggested some steamed rice and veggies so I finally got some some solid foods! I maintained this diet, slowly adding in herbs and more variety of fruits and veggies. During this time I had seen countless doctors who arrogantly informed me that it was all in my head and there was no reason I couldn't eat a normal diet! I was taking enzymes and probiotics the whole time as well as high end vitamins. My only real restrictions (from the doctors) was to eat low fat and protein and to eat several small meals a day. To manage the pain, which was suppose to also help my appetite, I was given narcotics, which made me feel worse so I didn't take them! Years 3 and 4 I tried very desperately to get back to a normal diet. I had read about whole wheat and the benefits of it and so I bought whole wheat breads and pastas. Again I spent the day in the bathroom! By this point it was starting to make sense to me that it was the wheat! Of course I was crazy and refered to many a shrink by the MD's! I never heard of celiac and several doctors I had seen said there was no such thing as an allergy to wheat. One doctor went back to the whole eating disorder thing which really frustrated me! I went through that when I was a teen because my sister was bulimic so all of a sudden I had an eating disorder because she did! Three therapist later everybody finally agreed that I didn't have an eating disorder. Of course by that point I started thinking what is wrong with me because I had heard it for so long from so many " professionals " ! When I was an infant, I was failure to thrive, take me home to die! As a toddler, I was jealous of my sister. As a child I was just seeking attention, as a teen I had an eating disorder. Then finally as an adult I was a hypochondriac with a possible eating disorder! I was fed up with the whole medical system and I quit going! I had another appointment scheduled with " the best GI I could ever hope for " and when they called to confirm the appointment I said NO! I fired him as my doctor as well as all the others! I'm the boss because it's my body and nobody is listening to me so they are all fired! I started studying holistic health. I came across an article in a magazine about celiac and it made sense. I knew, finally, the answer! To confirm I did the challenge (as I've already been eliminating!) and I discussed it with my GYN, who was the only doctor listening to me at the time! She said I should get a GI to confirm it. Ha! So 2 more years after being totally and completely on a strict gluten free diet I got a blood test which was negative! (What a surprise!) So, fed up still, I said screw MD's I'm on the diet and I can actually keep food down so who needs a confirmed diagnosis! Well when I had flair ups from my pancreatitis and had to go to the ER of IV fluids, which I never can just get the fluids! I got the 3rd degree from the ER doctor because I was claiming to have a condition yet I had no current GI doctor nor a confirmed diagnosis! I'm in pain, I can't keep anything down and all I ask for is IV fluids, but I need pain medication that I don't want and I need to get a CT scan, which means I have to drink crap that possibly contains gluten and who knows what else! The fact that I'm vomiting it up doesn't mean anything either! I had to drink more of it! That night was a nightmare! So skipping ahead, I went to a celiac conference in Cranberry PA back in October and a Dr. Earnest Stanley spoke and after hearing him talk I decided what the hell, I'll give him a try! So he did the biopsies and the necessary testing on those biopsies to confirm that I do indeed have celiac disease! So after 30 years of pain and nearly dying countless times I finally have a confirmed diagnosis for what it's worth! In my studies of holistic health I have tried many therapies and modalities. I have an ionizer foot bath which works great for drawing toxins out of the body. A month ago I finally found a good dentist who listens to me and he is replacing all my fillings. Two more visits and I should be good! My insurance is also going to cover acupuncture for pain management at a local hospital so that is my next stop! Of all the therapies and modalities and supplements, the only thing that helps my pain is valerin root, and it's not 100%! On a pain scale it takes me from a 10 down to about a 7! I've heard good things about acupuncture so I'm hoping it really works for me! I'll let you all know after a few treatments! Didn't mean to go on a rant! Thanks for listening! I gave up on doctors a long time ago! I only use them for what I need them for and I let them know that I'm the boss going in! Don't like it, your fired! Next! LOL I think I pretty much answered everyone's questions throughout my rant! Thanks! Jae On Sat, Feb 21, 2009 at 1:52 PM, Brenda-Lee Olson < shalomaleichemacademy wrote: > Sounds like a plan to see either a holistic naturopath or a clinical > ecologist (a medical doctor who specializes in environmental medicine and > who considers the whole person not just the symptoms of individual > illnesses). That's what I need too, but as my grandma used to say, they are > scarce as hen's teeth. > > BL > > > On Fri, Feb 20, 2009 at 11:33 AM, Laurie <lau123<lau123%40gmail.com>> > wrote: > > > Mostly, it's how to function on a daily basis. I have " had the flu " for > > a solid year ,minus four GREAT days in November and then a couple days in > > February. I randomly get a GREAT (read normal) day. The > > doctors ARE paying attention, sort of. But as long as I am ambulatory and > > can breathe on my own, they don't seem to be looking for anything. > > > > The refractory sprue is maybe the least of my problems. LOL > > > > I think I am going to hire a naturopath to look at the WHOLE picture, not > > individual symptoms. Sort of tired of that circus. > > > > Quote Link to comment Share on other sites More sharing options...
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