my doctor made me happy

i got a call from my GI the other day. i talked to his secretary/PA or something (dont know, dont care). anyhoo, she was calling on behalf of my GI. he got a new patient, newly diagnosed and all. she was calling and wanted to know, on my doctor's behalf, what diet i have been using so he could pass this info on to his new patient (i told her the maker's diet and scd). i must admit, i was pleasantly surprised and it made me very happy that my doc would recommend diet to a patient. i can only imagine that the patient brought it up to him, as "what other than meds can one do for this disease?" so it was cool to know that perhaps my GI is or is becoming more open minded from my experience that he can tell people about diet and not be one of those docs where you have to take pills for the rest of your life no matter what and diet has no role in the management or onset of this disease. needless to say, it made my day.

Wow!

(Keeper, you're funny!)

Great news Harry! I may be able to win a convert with my GI too. She seems very open minded, and was interested in SCD.

thanks gemini kiwi, but i actually dont have all my plumbing - i did lose like a foot of colon but i'm still holding on to my arse. ha ha ha

i just realized i'm almost at 2 yrs of no meds. pretty cool. i wish every one could be doing what i'm doing and getting the same results.

Diets become second nature after awhile. I adjusted quickly, and have never felt a need to "cheat." I don't feel like my diet is restricted, because there is a ton of stuff to eat. Plus, once I started learning about nutrition and looking at food labels, I pretty much lost my desire to eat thing full of ingredients I can't pronounce. My biggest problem with SCD is convincing people not to feel sorry that I can't eat a Big Mac.

Some people may always need meds, but not everyone will. I know 2 people who have crohn's and don't take meds. One has been in remission for about 20 years (after a resection), the other struggles but her doctors say meds won't do anything for her (she has a bunch of strictures, but no active disease). There are several people at the SCD boards who are med free and whose colonoscopies come back clean. So long as you get regular colonoscopies to be sure the disease hasn't come back, I don't see much danger in stopping meds after being symptom free for awhile. As for me, I'd like to get off Humira and onto LDN., so I won't be going med-free anytime soon.

i totally agree with spookyhurst. i thought the makers diet was impossible when i started so cheated and began the maintenance phase instead of doing it properly. even the scd is very intimidating. the reason being is these diets get you off eating your normal/comfort food which is processed grain based foods and eating more fruits and veggies which we've all learned from experience are no no's. once i sucked it up and did it, i found i could tolerate some of these foods again and when it became a habit, i feel i have TONS of food to eat and i am not limited at all. once you change your eating habits, you'll realize there are more foods out there than you think.

since the disease is so different and effects us all differently and has been found on several genes, there is not one universal treatment. some people get by with an occasional b-12 shot or a short boost of prednisone on occasion and then you have a case like randynoguts which is pretty extreme and then of course all of us in between. some need meds, some dont. some need a lot. some need a little. i have been on virtually all the meds and was on them for over a decade before i did the diet thing and got the results i desired with meds. this is why i said "i wish every one could be doing what i'm doing and getting the same results." it may not work for everyone as well as it did for me, but i wish it would. that is the point of the post, not to spark a debate between what is the best/desired treatment. no one can answer that question.

moobydoo -

man, that is tough one. imho, diet is so much easier to do as an adult cos we can suck it up and choose to eat/drink something that is gross if we think it will help us in some one (wheat grass shots anyone?). i know if i was told about the makers diet or scd when i was diagnosed at 17 i probably would have blown it off. if i did do it, i know i would have quit or cheated and thus not given it a fair shake and then been against diet for the rest of my life as i tried and it did not work for me. so basically, one needs some maturity and a specific mind set when approaching diet as it is so hard and intimidating, especially when starting.

as a parent, you control what food is in your house and thus to a large degree what your children eat. this means you can exert some parental control and make them eat stuff. i know, easier said than done (i have young nieces i've baby sat for many times and they can be a handful come meal time, so i am not speaking completely out of my arse here). hopefully it does have to exerting some discipline, like finish/eat this or else kind of stuff. i think the trick is to disguise new foods and introduce them slowly. slowly get rid of soda and sugary drinks and foods. slowly wean her off grains and processed foods. but with a kid, you cant do it to just her. it has to be the whole family. you'll have to do some of it with her and set the example so she can learn from you. i assume you eat meals together. so you'll be eating the same stuff. sometimes it takes a while to find a new favorite food. took me a while to like plain yogurt and then goat milk yogurt and then plain goat milk yogurt. but we do acquire tastes. who liked coffee, especially black coffee the first time you tried it? or beer? you may have to doctor some foods up at first and slowly ratchet things back without her knowing, getting the foods more appropriate for the diet. eat fresh fruit instead of cookies and stuff. berries and yogurt is fantastic substitute for ice cream. if you do baking (cookies, cakes, etc) start using alternative ingredients like honey and maple syrup and spelt flour. she wont know. most kids dont like things cos they are new. for some reason growing up i remember hating kiwi fruit and plums. once i started the makers diet and gave them a try as an adult, i was upset with myself for not liking them as i was missing out on some very good food. it took me a long time to eat a burrito cos it was so different from a taco. i am sure you get my point.

oh, try to wean her off gluten and dairy and then do that for a while and see what happens. some people respond great to it.

when she gets older than you can begin to reason with her as an adult and educate her on nutrition and food and how it effects her as she is a special case. but in order to do that, you have to do your homework. and again, to make her not feel as an outsider, having to eat different and "special" food, i suggest you as a family adopt those eating habits. it builds support for her and you will experience to some degree what she is going through by eating the same way. and who knows, perhaps you can improve your health too???

i hope some of this helps.

best of luck!!!!

Just a passing thought - smoothies use mostly yogurt, fruit and honey and can be frozen like ice cream. You might be able to introduce that as a way to sneak the awful new stuff in. If you use that as lunch or breakfast, it is a bit like having ice cream for lunch/breakfast. Another idea - if she is due for a colonoscopy, you can use the prep as the start of the diet. It is only one day, but it is better than not starting at all.

It is not going to be possible to be strict with her all the time. She will be able to get junk food at school and after school and from her friends. One thing on your side is that if she can be brought into remission, she will be able to stand a bit of cheating without dangerous results. And then she will be able to see the effects of cheating for herself. You just need to connect her to the results of her eating choices. It really is not obvious to anyone what causes their stomach problems - food, stress, illness and many other environmental factors all contribute and the mix makes sorting it all out nearly impossible.

MoobyDoo, if you have not visited http://www.pecanbread.com/ or their yahoo group at http://health.groups.yahoo.com/group/pecanbread/, I highly recommend it! Most of the parents have autistic kids, but there are several with gut kids as well. It's a great place to talk about kid friendly foods, school lunch ideas, etc. A frequent poster is Diane, whose daughter was diagnosed with crohn's at, I believe, 10. She's now thriving!

If your daughter can understand the diet, it might help. Here are a couple resources for her:

http://www.pecanbread.com/p/scdscience2.html#kids
http://pecanbread.com/p/intro/nt/story.html

Here are some posts from parents on how they motivated their kids to try the diet: http://pecanbread.com/p/intro/nt/motivate.html

And here's some info on picky eaters:
http://pecanbread.com/p/intro/nt/picky.html

The diet is boring at the beginning, but that changes as you can add more foods. I adore the baked goods, as well as the frozen yogurt. Your kiddo will develop a liking for the new foods in a little time.

Lastly, here are some links to some SCD kid friendly food blogs (there are many more out there too). There's bound to be something there that catches your daughter's eye. Good luck!

http://www.comfybelly.com/scd_specific_carbohydrate_diet_recipes/
http://dunebythesearecipes.blogspot.com/
http://grainfreefoodie.blogspot.com/search/label/kid%20friendly
http://scdgirl.blogspot.com/
http://milkforthemorningcake.blogspot.com/ (look for the dishes marked SCD)
http://nomorecrohns.com/deliciousrecipes.aspx
http://www.comfytummy.com/category/recipes/
http://deliciouslygf.blogspot.com/
http://eatingscd.wordpress.com/
http://mrsedsresearchandrecipes.blogspot.com/

Gonna have to make the leap again into trying these diets. I agree it is hard, I am barely eating again and I am scared that between my cooking and a diet I might stop eating !!! although that would probaby be my cooking LOL ! But I am so sick of being glued to a toilet even though I am on the Infusion. Thanks for the links they really help. Oh I am in the phase of hating this disease, so I guess pick myself up dust myself down and get into the Kitchen!!!!!!!

i follow the makers diet mostly. i stay on phase 3 (the maintenance phase) but if i feel something may be happening, i ratchet back to phase 1 or 2 as needed for as long as needed. both are good ways, imho, to detox the system too.

i dont follow the scd to a T cos i'll eat grain based foods, but this is very limited. like sprouted grain toast or steel cut oatmeal or home made museli in the morning and that's it. i guess one can argue quinoa is a grain. i'll have that once in a while (it makes a nice rice substitute). but i dont do FOS. most of the "dont" foods of the scd are also not allowed on the makers diet, especially on phases 1 and 2 as those get you off grain based foods and sugars. i dont have a sweet tooth anymore so it is easy for me now. most of my grains are eaten in the morning after i've gone to the gym or been surfing, so i replace the energy i just expended. i only eat rice on the rare occasion i have a sushi roll. i never was a potato guy. when having grains i use cinnamon as much as possible to lower the GI effect. i rarely touch alcohol, but i will have one or two on occasion but i'm such a light weight now that 1 or 2 is all i can handle. i dont drink soda or fruit juice (unless fresh squeezed i made). i'll have a tea infusion once in a while but i treat it like coffee/energy drink so i only drink them when i need to. nuts are always raw with nothing added (i eat mostly almonds, walnuts and pecans). i dont discriminate with fruits or vegetables (i eat them all). basically nothing i eat comes in a can or box - i eat as fresh as possible and eliminate as best i can anything processed or artificial. i dont agree with the scd's use of artificial sweeteners. those i dont touch. i dont touch anything made from the soybean. very rarely will i have any processed meat (ie sandwich meat). i make sure my dried fruit is only dried fruit - no added sugars or oils or sulfates/sulfites. i will use black strap molasses or maply syrup (baking, sweetener for pancakes/oatmeal) so i cheat on the scd there. i dont use ketchup cos most contain sugars. i dont eat ice cream (dont crave it anymore). i dont eat crackers, pasta, or snack on bread either. i use organic butter and coconut oil, not oils and sprays. olive oil is a condiment, not a cooking oil.

i eat mostly fruits and vegetables (more raw than cooked) and lean meats, trying to do fish at least once a week. i dont eat much red meat anymore since i've been fighting with my complex who do not want me to have a bbq on my balcony claiming it is a fire hazard (man i miss lamb). i use honey sparingly too, really only with baking but then i'll use alternative flours, like almond or coconut flour or flours with less gluten like spelt or amaranth or kamut. and even then i dont do much baking.

i do dairy sparingly. i might use if for a week or two then not have any for a while. i tolerate cheese fine, but i cant have too much yogurt or kefir in one sitting cos i think it makes me a bit gassy. oh well. i use almond milk in my smoothies as that is the best milk substitute i can find. i dont use honey in it anymore. generally just almond milk and/or kefir/yogurt and frozen fruit with some coconut oil and perhaps a raw egg. sometimes i'll add a bit of vanilla extract. if i have some **** *** lying around i'll add some of that. i stopped using flax seed oil as that just goes rancid way too fast. imho you're better off using a fish/krill oil supplement to get your omega 3s.

i like to control the ingredients so i make all my own stuff as much as i can. salad dressings are lemon juice and sometimes olive oil and red wine vinegar. i'll make my own pesto sauce. i dont make my own yogurt as much as i used to cos i can only find ultra pasteurized goat milk and that isnt supposed to work well in making yogurt and i've found through experience that raw milk does not set up well and make good yogurt. but i'll make my own granola on occasion, and trail mix and muesli and cookies. i've developed recipes using almond butter instead of flour for cookies so they are gluten and wheat free but i store them in the freezer cos at room temp the natural oils would separate and you'd have a giant mess. cos they're in the freezer, i generally forget i have them so i dont eat them very often.

i consider every time i eat out, i cheat. even if it is at the deli at whole foods. so the trick here is to read the labels (if the food has labels) and know what ingredients are going into your food, how often you eat out, and what you eat when you eat out. digestive enzymes are a must. i always take more when i eat out than i would if i made the food myself.

if you really want to see first hand how i eat and shop, feel free to visit. san diego is great this time of year. surf will begin to pick up too.

Have you melted yet CH? I am in San Diego too, it was a hot one last week. I live in the coastal area so it wasnt too bad, but it was pretty warm.

I am well impressed with your diet, if that helps you with your surfing I might manage 20 mins of a walk and its bloody cold where I live.
Thanks Crazy Harry. But if I am eating it and cooking it there may be aa few others forced to eat it with me, my family will love me !! lol