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Scd thread...PART I

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Ulcerative Colitis
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Posted 7/20/2010 6:17 AM (GMT 0)
I have noticed since I started this diet that on busy days where I forget to drink water I get a bad headache. If I drink tons of water all day I dont get one. Maybe its flushing out all the die off crud? Headaches suck when you cant take advil. Tylenol doesnt do squat!
Posted 7/20/2010 8:55 AM (GMT 0)
I woke up feeling pretty good. I still feel a little bit flu-ish like but headache is pretty much gone. When I was a kid I got the worst migraines, vomiting, the shakes and all that, so when I get a teeny headache I cant cope, lol. I take cocodamal... dont know if its allowed, its codien and tylonol equivelant. I felt good knowing the diet is 'working', in that the die off might be whats causing me to feel crappy. I guess it happens in stages, maybe? Which may explain the nasty headache I woke up with the other night. Doing well now. I added avocado today, I knew it would be ok and it was.

Not sure if you have already seen the so called dying off symptoms list but Ill post them here with a little < next to the ones I noticed yesterday (and a << that Im getting still today)



* Flu Like Symptoms <<
* fever
* extreme hunger
* nausea and vomiting.<
* dizziness<<
* achy joints and back<<
* change in bowels (diarrhea or constipation)<<C
* strange skin rashes
* runny nose and funny cough<<
* headaches<
* behavior changes/irritability/tantrums/short tempered
* sleep disturbances
Posted 7/20/2010 6:12 PM (GMT 0)
It's so nice to see other women on here close to my age that I can talk to. I am on day 4 of the SCD Diet. It's getting easier by the day (I think). My precious husband is religiously doing the diet with me although I encourage him to eat what he wants.

Quick synopsis:

In 2006 was in my final semester of nursing school, and was diagnosed during spring break with UC.

Started Asacol then just quit I guess b/c I was in denial. I was very sick..had pitting edema in my legs, lost about 25 lbs and my hematocrit dropped to 23. Then I restarted Asacol and had been flare free until 2009. In March 09 had to have a root canal and started Amoxicillin. Within 2 days I had symptoms once again and haven't been right since. So my MD put me on Mesalamine enemas then eventually added prednisone for a month. (I hate that I ever took that drug)

I had a colonoscopy in March of 2010 and showed only mild inflammation and old scarring. That's when I added Prednisone to my regimen. Didn't see to help much. I would do really well with enemas and about 2 weeks after I stopped them I would start flaring again. MD said next step would be Remicade. I havent called him back but refuse to go that route.

So here I am today...found tons of success stories on this diet. It's been so hard and trying so far but I have hope.

I restarted my enemas to get me through the mild flare symptoms then will taper off again in about a week in hopes the diet is doing all the healing. Since restarting the enemas on Saturday I have no symptoms. :) YAY! Hope its more so b/c of the diet tho!!!

I know the SCD diet says you can start reintroducing foods after 1 year with caution. Has anyone heard of reintroducing sooner than that?

I have been doing a lot of research about alternative treatment and feel like this diet makes SO much sense. I have read literature that states that the "bad" bacteria in our gut needs to die off so the healthy bacteria can take over. I know this diet is helping to starve the bad bacteria, but I just know that there is a permanent answer to all of this. There has to be a way to completely replace the bacteria in your gut.

I have read some about fecal bacteriotherapy....so gross but again makes SO much sense.

I also have read some literature about food allergies and their relation to IBD. I am actually having a food allergy test done in the next week!

What are ya'lls thoughts about this?? (yes, I am southern girl...note "ya'lls) haha..

Biggest challenge for me is no bread and no coffee. I want to pull my hair out sometimes when I come to work and smell fresh coffee. Its "my fix". But I am suffering through.

Thanks!

KK

 

Post Edited (kk217) : 7/20/2010 12:15:45 PM (GMT-6)

Posted 7/20/2010 7:31 PM (GMT 0)
Hey KK, when you get that desperate you'll try anything right? Coffee was my poison for a long time until I realised it was a massive trigger for some of my latest flares.

When you say reintroduce new foods do you mean 'illegal' foods? I havent read or heard about that. Im looking at keeping all illegals out of my diet for good now. Have you done the intro diet? After the intro diet you introduce a new, easy to digest food every few days to see how you react. So far Im a week and a half into the diet and so far Ive only been able to handle avocado and butternut squash. I started with simply prepared (broiled/grilled) chicken/meats, chicken soup, eggs (usually scrambled), and the stuff allowed on the intro diet. I did have a little set back over the weekend, had some wine and cheese and olives ... nothing illegal but added them too soon. I was pmsing and desperate, lol. Atleast it wasnt chocolate. I also had tried to add grape juice, apple juice (bc those are allowed on the intro diet), banana, scd yoghurt and they all caused me problems. Its just too soon for me. So I went back to just chicken soup with carrots and butternut squash.

One thing I kind of cheat with tho is green tea. Now, I usually drink herbal teas anyway. I cant have chammomile, its illegal, so I drink as much green tea as I need. I read at the peacanbread site that it can help with the dying off symptoms.... so Im running with that. They say you can take things slowly and Im going thru the dying off symptoms so something is working.

In fact I was feeling them badly yesterday (they dying off symptoms). Then felt fine this morning, just a bit dizzy, but this evening Im feeling a bit woozy again. Head swimming, a bit achy. Not as bad as yesterday but it seems to go in stages, the symptoms come and go.

Im off to hang with my kids now...
Posted 7/21/2010 4:47 PM (GMT 0)
Hey guys. do you guys get cramping with your UC? ... and do you still get it when you are on scd? I get cramps whether I have other flaring symptoms or not. I can be diarreah and blood/mucus free but still feel crampy. Granted its not as bad as it was before I started SCD. I was wondering if anyone on scd had cramping issues that did or didnt go away once getting on with scd.
Posted 7/21/2010 5:18 PM (GMT 0)
Well I still get crampy. My last flare was soooo bad so I'm not suprised. I still have skinny stools too. All of my other symptoms are gone though. I lost incredible amounts of blood too. The bleeding went away gradually as I started SCD, then even more away with Rowasa, and now completely gone since I stopped coffee (waaaa). I drink green tea too. I need some caffeine.
kk217, it sounds like this diet will probably work well for you. If you flared right after antibiotics it seems like candida is a trigger for you. Take a ton of probiotics. The SCD yogurt will be perfect once you are able to have it. Until then try to take at least 10 billion bacteria cultures a day.
I'm with you Gen, I think I'm a lifer on this diet. Having pancolitis I dont even want to risk getting sick. It is truly healthier for us anyways! I'm hoping one day to be able to have little cheat foods as occasional treats.
I had allergy testing and came up negative for any wheat, milk allergies. I actually have gotten hives from bread in the past. I had pancakes awhile ago and had shortness of breath. I think alot of us have intolerances instead of allergies. I get tons of mucous from dairy too. Dont be suprised if your allergy testing comes up negative.
Posted 7/23/2010 1:07 AM (GMT 0)
Other than honey what else do you guys use to sweeten food or drinks?
Posted 7/23/2010 7:25 AM (GMT 0)
honey is all i use actually.
Posted 7/23/2010 7:32 AM (GMT 0)
Just honey for me too. The book says you can have saccarine (sweet n low) but thats not healthy so I'm gonna try and staying away from it. I had a diet Coke at a restaurant a couple weeks ago and it didnt hurt.
Posted 7/23/2010 2:19 PM (GMT 0)
I use both honey and SweetnLow but not a lot of either.

After a while I found I don't need a lot of sugar taste, just a little When I make muffins with almond flour the raisins and shredded butternut squash are sweet enough to use very little honey in the recipe.

Funny thing is I haven't lost any more weight :-) after losing about 8 pounds in the first 5-6 months.
Posted 7/23/2010 3:52 PM (GMT 0)
Ima, can you post that butternut squash muffin recipe? Ive wanted to search for it at peacanbread but couldnt find it. I did try the almond cookies yesterday and they werent too bad. not something I can eat a whole lot of. They just feel heavy in my stomach and make me feel full for a long time.
Posted 7/23/2010 11:49 PM (GMT 0)
genifer
I'm out of town but from memory my recipe is super simple and I don't do a lot of measuring anyway.

2 cups almond flour
2-3 cups shredded butternut squash or anything really, I also use shredded carrot or another squash too.
1 to 2 tsp. baking soda sprinkled over the first two ingredients and blended in
1/2 cup of raisins (if you are at that SCD stage) Cut up prune pieces would also be a good substitute.
2 to 3 eggs. Try 2 eggs and see how wet the mix is, you don't want it too wet, it'll take forever to bake and be done.

Coconut oil- sometimes I add a few tablespoons and sometimes I don't. You decide.

Honey? Taste the mix and decide if you need a little honey. Really don't need much if any.
I decided since I was the one eating it I could add honey on top after baking if they weren't sweet enough. No one to please except me. :-)

I make both muffins and small bread pan loaves.
Bake 350 degrees. After 20 minutes I check with a toothpick. If it comes out clean they're done.
Muffins get done faster than the loaf pans.

P.S. This is a LARGE batch that makes about 12 muffins AND a small loaf or 2. You can cut everything in half to make a smaller batch.
Posted 7/24/2010 6:27 AM (GMT 0)
Thanks a whole bunch. I have some butternut squash I need to use up. Thanks!!
Posted 7/24/2010 6:44 AM (GMT 0)
Thanks for the great recipe! I cant wait to try it. I love my morning muffins, it makes pill taking much easier on my tummy.
Posted 7/25/2010 2:07 AM (GMT 0)
Ok I think the die off is hitting me full force now. I'm dizzy and have been sooooo tired all week. I come home from work and lay down right away. My colitis is doing great so I'm not complaining but good grief!!!
Posted 7/25/2010 2:38 AM (GMT 0)
I'm in about week 6 of SCD.  (sorry I didn't join this discussion sooner, I just got back from 2 weeks of traveling).  Traveling was actually pretty tough on the SCD because I was eating out every day.  Brought a big cooler with about 10 days worth of homemade yogurt, brought a little kefir culture to keep going so I could have kefir every day, lots of fresh fruits and veggies.  When dining out (mostly for dinner), I tried to stay legal but I think almost every day there was some little thing (a sauce or salad dressing, usually) that probably had some no-no food in it.  My bleeding had actually stopped right at the begining of my trip, and then started up again, and I'm hoping it'll go away now that I'm home and cooking my own dinners again.

As for die off, I felt really drained and tired for the first week or so of the diet.  That may be from die off, maybe just my body adjusting to not eating carbs.  I always felt like something was missing and felt very hungry a lot, but now I'm used to the diet and feel pretty darn good.

In a nutshell, I was just diagnosed in April 2010 (had been bleeding since Feb), my doc perscribed canasa which seemed to make everything worse.  So I took canasa for about 2 weeks and quit.  Switched doctors.  Took hydrocortisone for about 3 weeks, and started SCD about the same time.  My major symptoms are just blood in my poop, and a little cramping here and there, but really no cramping since starting SCD.  I do have a family history of autoimmune issues (mom and other relatives have celiac, dad has ulcerative colitis).  Yippie.  Would LOVE to get thorugh this with as little drug use as possible.  I've been taking probiotics, boswellia, turmeric, fish oil, eating the yogurt, doing SCD...  trying to exercise every day and also do a little quiet meditation before going to bed each night.  I'm 37 and have 2 little kids.  I just hope they never get it.

I think it's a good idea to have a SCD thread.  There has certainly been a lot of discussion about it recently.  It's nice to know we're not alone and it will be interesting to compare experiences and results!

Posted 7/25/2010 3:19 AM (GMT 0)
about tiredness: the times I've really felt it has always turned out to be caused by constipation. It's taking my colon time to adjust to changes and different fiber intake. Drinking more water helps a lot, with fatigue and C.
Posted 7/25/2010 7:26 AM (GMT 0)
Welcome to the discussion Zucc! It is nice to have this thread to come to, really nice to have others who are further along than me and their experience to turn to when Im a bit confused with the diet. I had put off buying the book BTVC, but just yesterday ordered the other one with all the recipes. Now that Im into the diet I actually want to get my hands on it, but its a bit too much for us right now.

Its interesting to see what different things we can tolerate. Heidi, I was reading over the earlier posts to see how long you've been on the diet but I dont think you mentioned it. Ive just finished week 2 and introduced only a few new foods, mostly just bc Im trying to be careful. There has been a day or two where Ive thrown caution to the wind and added two new things, but only bc I knew they were both things Id likely tolerate pretty well. I really really believe the main things that hurt my gut so much were the biggest illegals: starch, complex carbs (like potatoes, bread and rice... I had already really cut back on those prior to starting scd, I NEVER ate rice, Id be dying for days if I did), sugar and milk. I could always tolerate yoghurt nicely.

Now, Heidi, the reason I wanted to know how far along you were was bc you mentioned the die off symptoms. Ive gotten those on and off since the end of week one/beginning week two. There are days when I feel achy in the joints, headachy, and just all around flu-y, Ive even felt a tiny bit feverish but I dont think its actually been raised. I also felt the trade off was worth it! Its fascinating 'watching' how my body is working. There are days when the joints in my fingers ache! Strange.

Ima, Ive also been struggling with C and it has made me feel sluggish and tired. I do wonder if C can be due to die off too, but mostly I think its a fiber thing. I did what I could to sort it. Tried the grape juice bc it helped in the beginning to get me going. Yesterday I made some butternut squash 'muffins' (it was but butternut squash buttons recipe from peacanbread, had no nut flour in it) and today Im doing alright. I hate talking about toilet ...stuff... dh and I go on about it but with perfect strangers I dont know if Ill ever get used to it... even you guys. rolleyes

Yesterday I slept a lot! My kids are loving it! They just finished school and I said we'd be doing a big house clean up (bc its a mess!) and instead, Ive slept and they've done what they wanted! lol.

Anyway, Welcome Zucchini, join right in! The more the merrier!

gen
Posted 7/25/2010 8:48 AM (GMT 0)
I kinda lost track but I think I'm on week 7 or so. Yeah, I dont know if its more die off or what but i'm wiped out this week. I'm going twice a day after breakfast and dinner so I'm not constipated. I did increase my probiotics so that might have kicked it up a notch. I'm still having skinny stools quite often which tells me theres still some inflammation happening. I havent had bleeding or mucous since I had a cheat moment on fathers day. Maybe I'm tired because the weather here in San Diego has been so random. We've had hot and humid, hot and dry, rain, and cool weather just in the last 2 weeks. We usually have very moderate weather all the time. Hopefully I will snap out of it soon. I only walked the pugs once this week and they are pissed :)
Posted 7/25/2010 10:00 AM (GMT 0)
How is everyone doing on SCD has anyone noticed reduced symptoms. Since i ve been doing the diet stuff i haven had a majour flare since april 2009.. 2009 was terrible its when i woke up and realized how bad this ill ness was. i was throwing up, bloated had stomach spasms. fever left and right sided pain. didnt know how much medication i should be taking no advice. I still have not had a colonocscopy in 7 years or so. plus they lost the recods of the first one any way. boy i just gave up. im so glad i found this diet. anyway if anyone notices a huge difference please post. :)imagardener2 i know you already have so thanks for starting this tread i will follow it.
Posted 7/25/2010 1:39 PM (GMT 0)
hello hellokitty :-)

good to have you pop in. I can't take credit for this thread, it was SoIGotIBD.
BTW I am still on the hunt for wormwood, etc from GGreens supp. list. I'm travelling and headed to Albuquerque NM where there should be a big health store to browse.

This is the first time in YEARS I am travelling (by auto) and my gut is happy, no issues, no morning stress when DH is in the only motel bathroom. Really wonderful. Maybe someday I can fly without fear too.
Posted 7/25/2010 2:06 PM (GMT 0)

Hey Guys!! I am officially through week 1 of the SCD diet! Seems much longer than that! Reading all of your posts has me a bit concerned! I think I may be adding way too many foods in all at once! When I started the diet I was just beginning another flare..(always happened when I ended my mesalamine enemas). I was not having D just mucous and blood. I do have occasions where I get crampy and have gas or go to the restroom and have blood. I tried cheese once last week and on the same day tried nuts (and way too many b/c I made a nutty spread) and it also had raisins in it. I guess I just assumed if I didnt have D i could add a bunch of stuff. I just now got the book in the mail and have begun reading it. It's so hard b/c I still want to have some feeling of normalcy through all this. Yesterday morning I passed from free blood..so trying to figure out what may have caused that. My husband and I were going to a birthday party yesterday afternoon and instantly wanted something to get us through. We stopped at walgreens and got some dried fruit..but I guess it probably wasnt legal. Think thats what gave me the gas and cramping.

I need some suggestions/advice. I feel like the diet is helping but I am still having some symptoms on some days. !!!! Maybe I need to back down on some things and go kind of basic again.

I havent really had any die off symptoms other than feeling tired and hungry. I think thats just adjusting to the big decrease in carbs. I was very hungry the first few days but that has also subsided.

I read in the book that a study was done to look at the diets of several people with Crohn's and all of them ate diets high in sugar. Was that the case for yall before diagnosis!? As a kid I remember eating tons of sweets and candy! cry

Need some advice from the seasoned SCDers! shocked   Am I not allowed to eat almond flour yet b/c I have been using it to make pancakes and I made a veggie pot pie recipe from the Comfy Belly website last night!

If anyone has particular brands of foods/snacks that are legal please post.

Anyone know about Lara bars?? They seem to be all natural!

Post Edited (kk217) : 7/25/2010 8:48:31 AM (GMT-6)

Posted 7/25/2010 5:08 PM (GMT 0)
I skipped the intro diet because i was not having diarrhea, just pretty normal feeling but with blood in my poo.  I am sticking with the diet pretty well, lots of fruits and veggies, the yogurt seems fine with me, and a little bit of chicken, turkey, or fish. 

I would definitely recommend getting the SCD book, if you don't already have it.  Not so much for the recipes, but for the how and why this is all supposed to work.  I found it an interesting read.  I did buy 2 other cookbooks (Everyday Grain Free Cooking and Recipes for the Specific Carbohydrate Diet), and I have really appreciated having these, the recipes I've tried have been very tasty.  I also got a cookbook about cooking with coconut flour, which has yielded some decent pancakes and muffins so far.  

I would think that if you're not having D, that almond flour should be okay, but don't overdose on it, I read somewhere that you probably shouldn't eat more than 2 almond flour muffins in a day.  I have made some almond flour cheese crackers that I love for a quick nibble between meals.

I'm curious too, what happened with other peoples' symptoms after starting the diet?

My blood disappeared and I had really normal looking poops for a couple of days after being SCD for about 4 or 5 weeks.  Then I was travling and eating out and getting little bits of illegal foods and blood came back, though very minorly, and now that I've been home for 2 days and totally "legal" again, it seems to be slowly going away.  I certainly don't expect an overnight cure, but I wonder how long it will take my body to heal itself?

Keep on chatting.  :)

Posted 7/25/2010 8:09 PM (GMT 0)
kk217
I think zucc. has a good method. If it isn't bothering your colon and you're not having bothersome symptoms (urgency. D, C, gas, etc) then adding foods is fine.
When I started SCD I was in a very bad state, horrible quality of life.
I didn't start SCD right away, just went gluten-free. And my bleeding stopped in 2-3 days.
All other more bothersome symptoms remained, the ones that were really upsetting, especially urgency.
That's when I went full-SCD and results were less dramatic, much much slower.

Unlike you I had big problems adding new foods and could only do it slowly, one at a time, because even "legal" SCD foods bothered my digestive system.
How long did it take for my other symptoms to be relieved?
It happened so slowly that it was only obvious looking backward, but almost every week I was better than the week before and never worse.

Everyone is different so don't judge yourself against others. I've had to be patient but that's not a problem for me since I have no other choice except stronger drugs or surgery.

And besides being cautious with foods for my recovery I'd also say be cautious with supplements. Some caused me problems but because I only tried them one at a time I could tell what the problem was.

I think several peeps have been UC'rs for a short while and mine is 10 years old. I've got a lot more to repair I think :-)

I tried SCD years back but nothing good came of it then. Guess I'm older and wiser now.

P.S. Lara bars: only legal one is Carrot Cake (read that). I'm gonna try and find it. Dessert is always my friend.
Posted 7/25/2010 8:36 PM (GMT 0)
Hellokitty, I have noticed a HUGE difference. All my meds had slowed my symptoms down but nothing, not even pred got rid of the mucous and bleeding. I have been gluten "free" for years because I knew it affected me but I would cheat all the time. I had fallen off the gluten free wagon and had extreme stress before my last devastating flare up. Getting rid of all starches made a difference within 2 weeks. My mucous was gone! It took another week or 2 and the bleeding had stopped. I have my life back!!! I have been really tired just this week and I'm not sure why.
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