Hi Wendy-
I'm a bit late to jump in and welcome you! So glad you found us! Just want to let you know there are many ways to approach this disease - and we will support whatever choices you make!
I believe Pegster and I were the 2 people who had the best luck w/Asacol (maybe there are more - as the group has grown, I can't keep everyone's histories straight!) I did the Asacol and Pepto concurrently, then soon after had Dr. Fine's tests and went GF as well. It took me about 15 months on the diet before I could drop the meds (I was also pregnant, which somehow helped put me into remission, I think!) with confidence I wouldn't regress back to D!
I have to cook for a family, as well. I take some precautions (we have "mom's PB jar") - but I use the communal toaster and cutting boeards - just wash them between use. I also handle gluten every day - packing lunches for my kids, putting spaghetti in the water etc. I just wash up well between their food and mine. It would be great if my whole family was willing to eat GF - but they aren't (except for the brownies!) - plus it is fairly expensive - so I usually modify my own meal (separate pasta etc..)
Best of luck and welcome!!
Mary
Newbie here...this is kind of long, sorry!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Wendy,
Just wanted to pop in here to say a quick welcome and hello. I'm just getting over a major flare that had me pretty worried for a bit. Currently I'm taking 2 entocort/day and have been since the end of December. I didn't get better until a few weeks ago, though, when I stopped taking every last supplement that my naturopath had prescribed. Now I'm just following a very strict gfcf, grain-free and soy-free diet. I've lost a lot of weight, but I'm absolutely free from the D that plagued me so terribly. Have to be careful not to eat too many nuts (as I did today by eating 2 Lara bars - very bad idea to let my blood sugar get so low that I had to turn to quick energy - definitely feeling the cramps tonight.), but I'm doing so much better than I was. I hope that you find a resolution to your illness as soon as possible. So much of this is trial and error, but you've found a wonderful place to figure it all out.
Best,
Beth
Just wanted to pop in here to say a quick welcome and hello. I'm just getting over a major flare that had me pretty worried for a bit. Currently I'm taking 2 entocort/day and have been since the end of December. I didn't get better until a few weeks ago, though, when I stopped taking every last supplement that my naturopath had prescribed. Now I'm just following a very strict gfcf, grain-free and soy-free diet. I've lost a lot of weight, but I'm absolutely free from the D that plagued me so terribly. Have to be careful not to eat too many nuts (as I did today by eating 2 Lara bars - very bad idea to let my blood sugar get so low that I had to turn to quick energy - definitely feeling the cramps tonight.), but I'm doing so much better than I was. I hope that you find a resolution to your illness as soon as possible. So much of this is trial and error, but you've found a wonderful place to figure it all out.
Best,
Beth
Welcome 
!
I had to laugh when I saw "piemom" - I hope you are not too invested in PIES! It is not easy to make a GF/DF pie although it is possible. LOL!
I am a pioneer on this Board, having been diagnosed with MC (LC like you) 6 years ago and fortunate be in remission for 5 years on diet alone - after I discovered Dr. Fine's website and was tested. I am glad you got the full panel - it is very helpful.
I see you are having the gene test. As Wayne (tex) pointed out, the two "true" celiac genes are DQ2 and DQ8. However, many of us here do not have either of those genes. Rather, we have other genes that Dr. Fine has found to be associated with gluten sensitivity. All of my tests were negative for classic celiac disease and yet I am EXTREMELY sensitive to gluten. As it appears you are.
You have already done the GF/DF trial, so I will bet that you test positive for antibodies to both with Dr. Fine. Those are the 2 most common intolerances around here. What other tests for food intolerances are on the panel you ordered? I started by eliminating gluten and dairy and then eventually discovered by trial and error that I could not tolerate the other foods listed under my photo to the left. But I am ususual - most folks have far fewer intolerances than I do. Fortunately.
Eating GF is much easier than eating with multiple intolerances. In my case, I initially spent hours reading labels, learning about substitute grains, and revising the way I cook..............only to discover that it was just about impossible to eat any processed food because it is bound to contain another one of my intolerances, like corn, soy, yeast, etc. So I (and some others here with multiple intolerances) have adopted the paleo diet (if interested check out the book titled Paleo Diet by Lorin Cordain). There is a theory that some of us genetically are not yet adapted to be able to handle grains and dairy - most of us have British Isles/southern Europe ancestry where the hunter-gatherers lived and ate the paleo diet.
Anyway, I now eat only fresh meat/fowl/seafood, veggies, fruits, nuts and seeds. I have eliminated all grains with the exception of occasional rice. One of the first here to discover and perfect this diet was Matthew, who lives in Denver. If you decide to try this diet, he will be invaluable to you! I see he has left you a message! He was the first here to talk about shopping the "perimeter" of the grocery store - where the fresh food is usually located (and not the shelves that contain the processed food). It seems that carbs (esp. grains) are increasingly coming under fire. The latest research in today's paper says the Atkins diet (low carb) works the best for wt. loss as well as lowering blood pressure and cholesterol.
Anyway, if you wish to pursue dietary management of MC, there are many here who would be happy to help! With regard to your endoscopy question, if I were you I would skip the test for now. I don't think it would add anything - IOW, the treatment will be the same, right? But of course the decision is up to you and your doc. If you want another opinion, you can email Dr.Fine on his website and ask him. He personally answers questions from his patients.
Looking forward to future chats. And good luck! You sound as if you are well on your way on the path to health. It is important to be proactive and ask lots of questions - like you are already doing - to get the upper hand with MC. And you WILL be in control of your health, we promise.
Love,
Polly
!I had to laugh when I saw "piemom" - I hope you are not too invested in PIES! It is not easy to make a GF/DF pie although it is possible. LOL!
I am a pioneer on this Board, having been diagnosed with MC (LC like you) 6 years ago and fortunate be in remission for 5 years on diet alone - after I discovered Dr. Fine's website and was tested. I am glad you got the full panel - it is very helpful.
I see you are having the gene test. As Wayne (tex) pointed out, the two "true" celiac genes are DQ2 and DQ8. However, many of us here do not have either of those genes. Rather, we have other genes that Dr. Fine has found to be associated with gluten sensitivity. All of my tests were negative for classic celiac disease and yet I am EXTREMELY sensitive to gluten. As it appears you are.
You have already done the GF/DF trial, so I will bet that you test positive for antibodies to both with Dr. Fine. Those are the 2 most common intolerances around here. What other tests for food intolerances are on the panel you ordered? I started by eliminating gluten and dairy and then eventually discovered by trial and error that I could not tolerate the other foods listed under my photo to the left. But I am ususual - most folks have far fewer intolerances than I do. Fortunately.
Eating GF is much easier than eating with multiple intolerances. In my case, I initially spent hours reading labels, learning about substitute grains, and revising the way I cook..............only to discover that it was just about impossible to eat any processed food because it is bound to contain another one of my intolerances, like corn, soy, yeast, etc. So I (and some others here with multiple intolerances) have adopted the paleo diet (if interested check out the book titled Paleo Diet by Lorin Cordain). There is a theory that some of us genetically are not yet adapted to be able to handle grains and dairy - most of us have British Isles/southern Europe ancestry where the hunter-gatherers lived and ate the paleo diet.
Anyway, I now eat only fresh meat/fowl/seafood, veggies, fruits, nuts and seeds. I have eliminated all grains with the exception of occasional rice. One of the first here to discover and perfect this diet was Matthew, who lives in Denver. If you decide to try this diet, he will be invaluable to you! I see he has left you a message! He was the first here to talk about shopping the "perimeter" of the grocery store - where the fresh food is usually located (and not the shelves that contain the processed food). It seems that carbs (esp. grains) are increasingly coming under fire. The latest research in today's paper says the Atkins diet (low carb) works the best for wt. loss as well as lowering blood pressure and cholesterol.
Anyway, if you wish to pursue dietary management of MC, there are many here who would be happy to help! With regard to your endoscopy question, if I were you I would skip the test for now. I don't think it would add anything - IOW, the treatment will be the same, right? But of course the decision is up to you and your doc. If you want another opinion, you can email Dr.Fine on his website and ask him. He personally answers questions from his patients.
Looking forward to future chats. And good luck! You sound as if you are well on your way on the path to health. It is important to be proactive and ask lots of questions - like you are already doing - to get the upper hand with MC. And you WILL be in control of your health, we promise.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Again, all I can say is WOW! You are all just the most supportive and informative group I have thus far encountered. On a more selfish note, I love how literate and conscientious you all are about your typing! It's so nice to read a post that is grammatically correct (I'm a bit anal about the written language--ha ha, pun intended!--see, I fit in already!).
Actually, Polly, the pie in piemom comes from our last name. My husband is in the navy and his call sign is pieman. I was piewoman until the kids came along, and now I'm piemom. Though pie certainly has been one of my favorite foods (until now, that is...going to have to find a replacement, I guess. Chocolate mousse, perhaps?).
As for the Enterolab tests, I did the full panel, which includes the casein, but nothing else. My family doctor had mistakenly done a blood panel which included food allergies like fish, soy, corn, dairy, etc. and they all came back negative, though I don't know anything about the sensitivity of those tests. I am quite certain that my casein numbers will come back significant.
I haven't had time to write everyone back personally, but I have read everyone's posts and can't wait to get to know you all better--Matthew in particular, as you're in Denver--am wondering who your GI is and if you like him/her. I've had quite the experience with one office in particular and won't be going back to them! I did find Dr. Lewey, who is in CO Springs, and actually emailed back and forth with me on a number of occasions. I'd like to see him since he is well-versed in gluten sensitivity and has done lots of research. In fact, he is the first one who confirmed for me the connection between lc and gluten. I was extremely impressed...Anyway, they don't take my insurance yet, but are supposed to by June. I'm considering holding off until then--haven't quite decided yet if I should wait, but it certainly seems as though the obvious treatment plan is to go gluten free. I think I'm in a bit of denial over the whole thing, but if that's what it takes, that's what I'll do!
So, I'm in the middle of painting my bedroom--can't let that brush dry out, but I just had to do a quick post. I'll be back later when I need another break!
Have a lovely day,
Cheers,
Wendy
Actually, Polly, the pie in piemom comes from our last name. My husband is in the navy and his call sign is pieman. I was piewoman until the kids came along, and now I'm piemom. Though pie certainly has been one of my favorite foods (until now, that is...going to have to find a replacement, I guess. Chocolate mousse, perhaps?).
As for the Enterolab tests, I did the full panel, which includes the casein, but nothing else. My family doctor had mistakenly done a blood panel which included food allergies like fish, soy, corn, dairy, etc. and they all came back negative, though I don't know anything about the sensitivity of those tests. I am quite certain that my casein numbers will come back significant.
I haven't had time to write everyone back personally, but I have read everyone's posts and can't wait to get to know you all better--Matthew in particular, as you're in Denver--am wondering who your GI is and if you like him/her. I've had quite the experience with one office in particular and won't be going back to them! I did find Dr. Lewey, who is in CO Springs, and actually emailed back and forth with me on a number of occasions. I'd like to see him since he is well-versed in gluten sensitivity and has done lots of research. In fact, he is the first one who confirmed for me the connection between lc and gluten. I was extremely impressed...Anyway, they don't take my insurance yet, but are supposed to by June. I'm considering holding off until then--haven't quite decided yet if I should wait, but it certainly seems as though the obvious treatment plan is to go gluten free. I think I'm in a bit of denial over the whole thing, but if that's what it takes, that's what I'll do!
So, I'm in the middle of painting my bedroom--can't let that brush dry out, but I just had to do a quick post. I'll be back later when I need another break!
Have a lovely day,
Cheers,
Wendy
I didn't post a welcome yet, so perhaps this one will suffice.It sounds to me like you are going to fit in here just fine. We all feel more like "family" here than most boards, I think.
I am controlling my symptoms with Asacol, although initially I did take prednisone and then Entocort (along with the Asacol).
I admire you and everyone else who is controlling (even healing) with the GF or Paleo diet. I know you will be successful just from your attitude.
Welcome............. and looking forward to reading more of your posts.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill