Re: Re: Is it best to be honest with your doctor?

[Guest guest]

No, the 3 month flare is not for everyone. I never had one. I wasn't taking drugs, however. The only relapse I had was six months into the diet from drinking pineapple juice in Mexico that was loaded with corn syrup. I am glad that happened as it convinced me that I was doing the right thing and I NEVER wanted to feel that sick again.I think it's criminal that we are being told this diet doesn't work. Despite having two biopsies that showed I had UC, the GI I saw several years ago told me that if diet helped me I had IBS, not UC, and I needed to be on antidepressants. I'm healthy so I don't bother seeing GIs anymore. Although I have sometimes wished I could have a GI study my symptoms. A few days after I eat wheat and corn in particular, I develop huge mouth ulcers and have abdominal discomfort as I'm sure there are ulcers in my intestinal tract, too. A few days after I don't have any of the "illegals," my symptoms disappear. I wonder if a doctor would believe what s/he was seeing or would label me a hypochondriac--lovely since I'm a psychologist.A year ago last spring I allowed myself some cheats. I started experiencing numbness and mild paralysis in my leg. My mother has MS. I decided it wasn't worth having MS to stray from the diet. I am doing great now. I have been begging my mother to try my diet and she plans to give it the one-month go in September after getting a steroid treatment. She was diagnosed with diabetes also a couple years ago. After she went on a diabetic diet and stopped eating many of the foods I can't eat (or cut back on them), her MS improved dramatically. More recently, she has begun eating lots of carbs and sugars. She notices that when she eats SCD illegals she has GI symptoms and now her MS is exacerbated significantly. Until now, she hasn't wanted to admit she could have the same thing I have. I am praying that she will have dramatic symptom relief after just one month on the diet that will motivate her to continue. Of course, when she asked her doctor about diet, he said, "If you think it will help, it will." Sheesh. This diet is just a placebo effect? I don't think so. I predict we will one day discover that every autoimmune disorder has a diet connection.MelUpdate - I saw my doctor today and tried to talk to him about the scddiet, but he would not even respond to my question if he had ever heardof a monosacarride diet. He said don't eat any fruits or vegetables,eat everything else, that's all the diet you need.He was very pleased with the blood results and said his protocol ofAsacol, Cipro and probiotic were working and to continue. So he stilldoesn't know that the good results were from the SCD diet and not hismedicines. He didn't ask if I was following his orders and I didn'ttell him I wasn't.I'm sorry that this man will not listen to any talk of diet, but hewants another colonoscopy in September (last one in July) do any of youthink that is enough time to see visible healing in the colon from thediet? Anyone know how long it takes to go into visible remission or howlong to see a healed colon from SCD?I'm believing that the next colonoscopy will show that I am inremission, but I keep reading about a 3 month flare, is that foreveryone? Would love to hear what to expect next on this diet, stillwaiting for the book to arrive. Thanks guys for listening,Ann>>> I have a fairly good, but too conservative/text book doctor. He's> already told me that I'm a bad patient, and from his point of viewit's> true. My problem is this doctor is caring and concerned but will try> only the standard and common treatments. He wants me on Humiraalthough> Prednisone works great for me. He wants me on Asacol although it does> nothing for me but make my hair fall out and my skin itch. I've tried> Imuran, Methotrexate with horrible results, I'm alergic to sulfadrugs.>> I was recently hospitalized for a flare-up that included pyoderma> grangronosum. I responded well the Prednisone and am now reducing the> dose and following the scd. I take no other Rx meds. I want to stay on> the diet and reduce the steriods. In the hospital they would notpermit> me to eat fruit or vegtables, they served pasta and potatoes everymeal,> toast and sugery fruit juice for breakfast and hamberger patties made> with bread crumbs and sometimes chicken. For 5 days I ate only the> chicken when it was available.>> On Saturday I have to see the doctor to get my biopsy results from the> colonoscopy. My last blood work, 8 days into the diet showed NO> inflammation, first time in my life my CRP and Sed rate were in the> normal range even on Prednisone, and my lifelong anemia is gone and my> hemocrit and iron are normal. I know that steriods are helping too,but> I believe it's the diet. Two days into the diet all diarrhea stopped> and I have had normal stools since then, now 3rd week on the diet. I'm> doing great and love the diet. BUT......what do I tell the doctor?> Yes, I'm taking his Asacol and Cipro? I'm not, I'm eating all thefoods> he specifically prohibited, cheese, fruit and vegtables.>> Have any of you had to make this choice? I need this doctor for follow> up exams, colonoscopies, blood tests,etc. but I won't take his drugs.> I don't want to alienate him but I'm sure he won't listen to anythingas> silly as this diet (his opinion). Based on your experience, is it best> to tell him this is the plan I've chosen and let him judge the results> or just agree with him and let him write more Rx and pretend I'm> following his advice?>> All advice greatly appreciated! Thanks for listening.>> Ann>

[Guest guest]

Mel, Thanks for the info and the encouragement but I'm sorry you're also unable to communicate with your GI. I haven't decided if I even want to return to mine, so far, so good without him. Better in fact. I read yesterday that the drug he wanted me on, Humira, is now known to cause deadly fungus infections as well as possibly skin cancer. Thank God I found SCD instead.

I too am having some numbness in my feet and legs, the neurologist seems to think the steroids may have caused diabetes so I'll need some tests, if so, I hope that SCD will also help with that. This is a new symptom for me and I think it is related to the steroids.

I also think that all auto-immune disorders are diet or environmentally caused. I believe mine all started with radiation treatment as a baby and continued with antibiotic treatment in childhood.

I hope your mother will do well on the diet. Your story has certainly encouraged me. Thanks for sharing it.

Ann,

Living in Italy

Undiagnosed Crohn's since 1977 Diagnosed 15 years

Sacroiliitis 25 years

Rheumatoid arthritis 25 years

Pyoderma Gangronosum 2 years

SCD since July, 2008

Meds: Tapering Prednisone for PG

Re: Re: Is it best to be honest with your doctor?

No, the 3 month flare is not for everyone. I never had one. I wasn't taking drugs, however. The only relapse I had was six months into the diet from drinking pineapple juice in Mexico that was loaded with corn syrup. I am glad that happened as it convinced me that I was doing the right thing and I NEVER wanted to feel that sick again.

I think it's criminal that we are being told this diet doesn't work. Despite having two biopsies that showed I had UC, the GI I saw several years ago told me that if diet helped me I had IBS, not UC, and I needed to be on antidepressants. I'm healthy so I don't bother seeing GIs anymore. Although I have sometimes wished I could have a GI study my symptoms. A few days after I eat wheat and corn in particular, I develop huge mouth ulcers and have abdominal discomfort as I'm sure there are ulcers in my intestinal tract, too. A few days after I don't have any of the "illegals," my symptoms disappear. I wonder if a doctor would believe what s/he was seeing or would label me a hypochondriac- -lovely since I'm a psychologist.

A year ago last spring I allowed myself some cheats. I started experiencing numbness and mild paralysis in my leg. My mother has MS. I decided it wasn't worth having MS to stray from the diet. I am doing great now. I have been begging my mother to try my diet and she plans to give it the one-month go in September after getting a steroid treatment. She was diagnosed with diabetes also a couple years ago. After she went on a diabetic diet and stopped eating many of the foods I can't eat (or cut back on them), her MS improved dramatically. More recently, she has begun eating lots of carbs and sugars. She notices that when she eats SCD illegals she has GI symptoms and now her MS is exacerbated significantly. Until now, she hasn't wanted to admit she could have the same thing I have. I am praying that she will have dramatic symptom relief after just one month on the diet that will motivate her to continue. Of course, when she asked her doctor about diet,

he said, "If you think it will help, it will." Sheesh. This diet is just a placebo effect? I don't think so. I predict we will one day discover that every autoimmune disorder has a diet connection.

Mel

Update - I saw my doctor today and tried to talk to him about the scddiet, but he would not even respond to my question if he had ever heardof a monosacarride diet. He said don't eat any fruits or vegetables,eat everything else, that's all the diet you need.He was very pleased with the blood results and said his protocol ofAsacol, Cipro and probiotic were working and to continue. So he stilldoesn't know that the good results were from the SCD diet and not hismedicines. He didn't ask if I was following his orders and I didn'ttell him I wasn't.I'm sorry that this man will not listen to any talk of diet, but hewants another colonoscopy in September (last one in July) do any of youthink that is enough time to see visible healing in the colon from thediet? Anyone know how long it takes to go into visible remission or howlong to see a healed colon from SCD?I'm believing that the next

colonoscopy will show that I am inremission, but I keep reading about a 3 month flare, is that foreveryone? Would love to hear what to expect next on this diet, stillwaiting for the book to arrive. Thanks guys for listening,Ann>>> I have a fairly good, but too conservative/ text book doctor. He's> already told me that I'm a bad patient, and from his point of viewit's> true. My problem is this doctor is caring and concerned but will try> only the standard and common treatments. He wants me on Humiraalthough> Prednisone works great for me. He wants me on Asacol although it does> nothing for me but make my hair fall out and my skin

itch. I've tried> Imuran, Methotrexate with horrible results, I'm alergic to sulfadrugs.>> I was recently hospitalized for a flare-up that included pyoderma> grangronosum. I responded well the Prednisone and am now reducing the> dose and following the scd. I take no other Rx meds. I want to stay on> the diet and reduce the steriods. In the hospital they would notpermit> me to eat fruit or vegtables, they served pasta and potatoes everymeal,> toast and sugery fruit juice for breakfast and hamberger patties made> with bread crumbs and sometimes chicken. For 5 days I ate only the> chicken when it was available.>> On Saturday I have to see the doctor to get my biopsy results from the> colonoscopy. My last blood work, 8 days into the diet showed NO> inflammation, first time in my life my CRP and Sed rate were in the> normal range even on

Prednisone, and my lifelong anemia is gone and my> hemocrit and iron are normal. I know that steriods are helping too,but> I believe it's the diet. Two days into the diet all diarrhea stopped> and I have had normal stools since then, now 3rd week on the diet. I'm> doing great and love the diet. BUT......what do I tell the doctor?> Yes, I'm taking his Asacol and Cipro? I'm not, I'm eating all thefoods> he specifically prohibited, cheese, fruit and vegtables.>> Have any of you had to make this choice? I need this doctor for follow> up exams, colonoscopies, blood tests,etc. but I won't take his drugs.> I don't want to alienate him but I'm sure he won't listen to anythingas> silly as this diet (his opinion). Based on your experience, is it best> to tell him this is the plan I've chosen and let him judge the results> or just agree with him and let him write

more Rx and pretend I'm> following his advice?>> All advice greatly appreciated! Thanks for listening.>> Ann>