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04-19-2013, 01:47 PM   #91
smack116
 
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Hey guys- newbie here. Does anyone feel that the SCD or Paleo works pretty well? Right now, I'm gluten free. Need some guidance and advice.
04-19-2013, 03:08 PM   #92
Dee Dorset
 
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Hi I am a newbie too, can't tell you too much about SCD as I am waiting to try it myself, lots of good stuff on here though. I went gluten and dairy free and have been quite symptom free & no meds but then I would off road particularly choc and cakes and get sick flaring a couple of times a year. I have found a dietician and doc to support me trying the diet route properly once and for all for a year. We decided to follow Dr Hunter's suggestion from Cambridge to do a liquid diet first so I am on week two of an 8 week elemental 028 diet, (you drink 8 cartons of this milkshake type stuff) then I am going to start in SCD gently excluding beans and pulses nuts & dairy to start and leaving out illegal fodmaps items for 6 week. Are you thinking of taking the plunge and going on SCD? best of luck with everything.
04-19-2013, 11:53 PM   #93
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I'm 3ish months on the SCD, I feel better than i have felt in 15 years, and am weaning off my pentasa and imuran.

I cannot overstate what this diet has done for me. I used to feel like this CD controlled my life. Now i feel like I am the one with all the control.

Thank you to all those who encourage people to try it. You've changed my life!
04-20-2013, 01:46 AM   #94
rollinstone
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I'm 3ish months on the SCD, I feel better than i have felt in 15 years, and am weaning off my pentasa and imuran.

I cannot overstate what this diet has done for me. I used to feel like this CD controlled my life. Now i feel like I am the one with all the control.

Thank you to all those who encourage people to try it. You've changed my life!
Care to share your daily menu? I struggled maintaining this diet due to the monotony of what I was eating, started losing my appetite for it
04-20-2013, 09:09 AM   #95
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Before I was diagnosed with Crohns I was eating mostly Paleo to control what we thought was Celiac, and it was working wonderfully (and obvioulsy I was 100% gluten free). I had tried adding rice back into my diet, and got a tummy ache that lasted for 2 weeks and got worse and worse, until I was diagnosed in the ER in pain. After being dianosed (3 weeks ago) I fell off the wagon in an epic way. I'm starting again today.

I never went back to eating grains after my original attempts at adding rice in, but I have been eating way too much proccessed crap. Pop, candy, popsicles etc. I need to phase out all the sugar and junk again and get back to a very basic way of eating. My "trigger" foods are corn/rice/oats/gluten/dairy and nuts, all "non-paleo- foods anyway.
04-20-2013, 09:40 PM   #96
CrohniePilot
 
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Care to share your daily menu? I struggled maintaining this diet due to the monotony of what I was eating, started losing my appetite for it
I know EXACTLY where you are. I totally lost my appetite after going SCD. I posted on here about it actually. All I can say is, that once i realized it was WORKING, my perception shifted from something I had to do, to something I wanted to do.

Anyway, I don't have a daily menu. In general, here are some of my thoughts. I seldom try and simulate something that I can no longer have (like pizza). It always ends in me wishing for real pizza. So instead, I am focusing on simple things I CAN have. Here are some of my staple foods so far:

Snacks:

-Larabars. I eat a few a day on work days. They travel well, and are good healthy food.

-Fruit. I'm trying to eat a lot of fruit.

-Cheese slices

-Nuts

-Raisins

-Trader Joes Chocolate Honey Mints (thank god for those, they take care of my sweet tooth. I am addicted to them though.)

-Frozen mango or banana sorbet from the juicer.

Meals:

-Grilled chicken

-Veggies

-My wife is better about trying to cook new dishes for me than I am.

-I treated myself to a new charcoal grill, and have been focusing on enjoying grilling and bbq'ing. I smoked some yummy SCD baby back ribs, roasted a turkey breast and a whole chicken. I'm really trying to embrace BBQ because there is no reason any bbq meat can't be SCD. I am still experimenting with homemade SCD BBQ sauces.

-Juicing. My wife and I have been doing a lot of juicing.

-Eggs. I make a lot of omelets and scrambled eggs.

Gotta run for now, but there are some thoughts to start.
04-21-2013, 08:38 AM   #97
Charleigh
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I know EXACTLY where you are. I totally lost my appetite after going SCD. I posted on here about it actually. All I can say is, that once i realized it was WORKING, my perception shifted from something I had to do, to something I wanted to do.
Just want to second the above thought. E was really hesitant to go on this diet, but I told him not to look at it as "the rest of his life" yet but to just give me 30-60 days. I told him that if he didn't feel better after 60 days then we would check it off our list and move on. Well, this diet took my extremely sick and frail child and changed his life for the better. He is never tempted to cheat, he never asks for non-scd food, etc. He knows how much better he feels so he knows that it is 100% worth it. Before this diet, eating pizza and ice cream are important to you and the idea of living without those things is painful. But, just like crohniepilot states above, you perception changes. Your tastes change too by the way and you don't even crave those foods anymore!
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04-21-2013, 08:43 AM   #98
KWalker
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I can also vouch for this diet. I've had to make some changes and alter the diet at the moment because of financial and time restraints for now but I even notice a difference from adding a few things in, but there's nothing I can really do at the moment so I can only stick to the diet as much as I can. Even after altering the diet, I've lost taste for things I used to love before. I tried a can of pop after going months with no pop and I didn't even like it because it tasted so sugary and fake. I pretty much only drink water and smoothies now.

There are still tons of things you can eat with the diet, you just have to get used to it and commit yourself to it. As soon it becomes possible I will be following the diet 100% again.
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Remicade
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Methotrexate (oral)
Methotrexate (injections)
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04-21-2013, 01:33 PM   #99
CrohniePilot
 
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I can also vouch for this diet. I've had to make some changes and alter the diet at the moment because of financial and time restraints for now but I even notice a difference from adding a few things in, but there's nothing I can really do at the moment so I can only stick to the diet as much as I can. Even after altering the diet, I've lost taste for things I used to love before. I tried a can of pop after going months with no pop and I didn't even like it because it tasted so sugary and fake. I pretty much only drink water and smoothies now.

There are still tons of things you can eat with the diet, you just have to get used to it and commit yourself to it. As soon it becomes possible I will be following the diet 100% again.
Sorry that you're having to make sacrifices. I hope that someday diets like the SCD are recognized as a treatment for disease. We are what we eat after all right?

I'm finding that more and more people seem to be embracing healthier eating choices.
05-03-2013, 07:34 AM   #100
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I just try to encourage you to try and stay on SCD. My daughter had 2 years SCD and now we are on that stage, were she can eat lots of not legal foods, too. Only wheat, lactose and sugar are left.
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05-06-2013, 09:39 AM   #101
Amy2
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While reading on Pecanbread.com, I saw under common mistakes people make with SCD
"Starting the yogurt too soon"

But, yogurt is part of the intro-diet. Can anyone explain this?
Thanks!
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05-07-2013, 08:36 AM   #102
rollinstone
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It depends on ppl, some ppl don't tolerate dairy at all, check out SCD lifestyle I find them more up to date than pecanbread, they've got a free intro diet planner and stages mapped out. Hope this helps, I really needa get back into SCD/paleo iv been slacking
05-07-2013, 03:17 PM   #103
incik
 
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While reading on Pecanbread.com, I saw under common mistakes people make with SCD
"Starting the yogurt too soon"

But, yogurt is part of the intro-diet. Can anyone explain this?
Thanks!
One reason for that can be that pecanbread was/is originally for children, whos main illness is autism, and they often cant use milk products at all (casein and lactose).

It is difficult to check out if your body can digest casein from cow milk or not.. Start slowly with SCD yogourt and check your body.
05-07-2013, 08:00 PM   #104
Charleigh
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I think that the science behind SCD is fantastic and it makes sense. At the same time, it isn't a one-size-fits-all deal. Many with crohn's cannot digest the milk proteins and for them it isn't just a lactose issue. I really think this is why some try SCD and say it doesn't work ~ they aren't willing to tweak. We have had to tweak SCD for E. He cannot have dairy at all, even the lactose free type, and he can't eat legumes (so no peanuts or peanut butter).
05-08-2013, 02:49 PM   #105
Laura44
 
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I have crohns and my husband has heart disease - we are both fairly young and really need to get on this diet! Can anyone give me a list of foods they eat and how easy it is...that is works - just trying to convince myself this is possible!
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05-08-2013, 04:22 PM   #106
Beach
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I have crohns and my husband has heart disease - we are both fairly young and really need to get on this diet! Can anyone give me a list of foods they eat and how easy it is...that is works - just trying to convince myself this is possible!
I guess since I'm lucky enough to have both an IBD and heart disease (I have plaque in an artery) thought to chime in with what I've done. The diet I eat and supplements taken are nearly the same for both conditions. Both diets call for low sugar intake. I avoid all grains (wheat, corn, rice), which easily spike blood sugar levels. I also limit how much sugar and starchy foods I eat. Because of the gut I also limit how much fiber I eat. (hopfully that will change in the near future!)

Foods that I can eat as much as wanted are: meats (I personally avoid eggs, chicken, and pork as I feel these might be trigger foods), spices, vegetables, aged dairy (I personally eat little), nuts, some fruit.

The supplements I take are:

* Enough vitamin D3 to reach a testing level between 50 to 70ng/ml
* Around 2000mgs of EPA/DHA from fish oil.
* vitamin K2-4, and K7
* Some iodine rich kelp tablets for thyroid health
* krill oil
* melatonin for a good night sleep
* pregnenolone

As for the diet working for the gut and ease of the diet, we're all different. Some here report diets works great. Others sadly have not seen success. For me, none of the diets worked when followed strictly. It has taken some tweaking of the the paleo/primal type diet I follow for it to work.

For more information, a couple heart disease prevention sights that I enjoy following are Dr. Davis's. His emphasis with prevention is identifying your heart disease risk factors and correcting them. (high blood pressure, high LpA levels, diabetes, size of cholesterol, low vitamin D, thyroid problems, low hormone levels, etc.)

http://blog.trackyourplaque.com/

&

http://www.wheatbellyblog.com/

&

http://www.trackyourplaque.com/

Best of luck! Hope that helps.
05-09-2013, 08:26 PM   #107
Charleigh
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I have crohns and my husband has heart disease - we are both fairly young and really need to get on this diet! Can anyone give me a list of foods they eat and how easy it is...that is works - just trying to convince myself this is possible!
I highly advise you to read the book Breaking the Vicious Cycle to understand the science behind the diet. Also, I completely agree with Beach on the tweaking. While we believe in the science behind SCD, in the end we have ended up following more of a paleo/primal diet since we omit all dairy (even cheese and yogurt) and legumes. E does take an SCD approved probiotic though.
06-01-2013, 11:15 AM   #108
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HI all,
I've had crohn's for a little over 3 years. I'm on pentasa and recently tried LDN for a year. The LDN seemed to work for a while but I ended up feeling as bad or worse than I did before the LDN. I know it works very well for some.
Since I have "moderate" crohn's my gastroenterologist is not enthusiastic about changing my meds -( I appreciate that) - the problem, though, is that I suffer severe cramping and at times I'm up all night. I've also lost a lot of weight.
So I bought the book "Breaking the Vicious Cycle" and "Recipes for the Specific Carbohydrate Diet" and for the last month have adhered to it religiously. The result being that I am feeling better. I also should mention that I take magnesium and a drink called "Calm" which is a magnesium drink made in Canada but available in the states under other names. This drink allows me to move my bowels ( unlike many crohn's sufferers I am constipated much of the time ).
So that's my story - I have hopes that the progress to better health with this diet will continue. The recipes very tasty so I'm not having a problem staying with it.
06-05-2013, 09:22 AM   #109
Paul Cronk
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New joiner here, although I have been on relevant threads.

Started my SCD 6 weeks ago. I very quickly felt better on the existing meds Pred 20 mg per day. However, attempts to reduce the dosage have been bad, so maybe too soon? About two weeks ago I had found a well-established Candida infection which we treated with Fluconazole 50mg per day for 14 days. As soon as I started the Fluconazole I felt better but this has worn off. Testing tomorrow to see if Candida free now.

It Always gets me when things get better only to go back again. Should be more resilient by now but so tired I get a bit down. Currently on Pred 10mg but getting flare so I will have to go back to 15 or 20 until it improves.

I am just trying cutting out all milk products for a few days to see if that helps. Probably I went overboard with yog and kefir and cheddar so I am giving those a break just in case I find it is better without.

My last Coloscopy showed all inflammation in terminal ileum has gone (before the diet) so it is puzzling not to feel any better. Doing MRI in two weeks but I think they will not find anything although I am still straight into a flare if I reduce meds or get stressed. Funny old disease .....
06-05-2013, 09:47 AM   #110
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Hi Paul,
I might sounds like a broken record - but the key with SCD / GAPS etc... is patience. There is no room to rush, nor to expect miracles overnight. Food introduction is to be slow, and even in small doses at a time. In case of adverse food effects - u can always go back to intro diet for a short period (in this case - would suggest GAPS intro diet - based on broth and fermented food). BTW - an area that found to be quite controversial - is the consumption of fructose (via fruits) and sweets (honey). As per my understanding, their consumption is to be limited and as a rule of thumb not to exceed more than 15% of the overall diet. Sugars feed the bad bacteria, and beyond certain threshold (ranges between 72-100 grams carbs daily - as per different theories) the body can’t absorb it easily any more. Anyhow - takes long time for the gut to 'heal' - even though relief in symptoms can be achieved quite fast. Wouldn’t suggest medicines reduction so soon into the diet - definitely not after 6 weeks. Timeframes being discussed in different books range between 1-2 years on the diet before starting to reduce medicines or move to 'normal' diet - if at all. As long as the combination diet / medicines works - wouldn’t rash to change it - the longest u are in remission - the better for the gut to heal and even for the illness to 'burn out'.
Good luck!
06-05-2013, 10:15 AM   #111
Paul Cronk
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Thanks, I really appreciate your response - I have clearly been impatient and we will take a few steps back in order to start forward again. Funny thing is I had a few months of symptom remission a year ago when there was active inflammation so now the inflammation is clear I had hoped to achieve symptomatic remission more easily. Should have known the disease would have other ideas!
06-06-2013, 10:43 AM   #112
Amy2
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After feeling perfect for few weeks, son has had 2 bad days in a row, now. Says things just don't feel like they're moving correctly and had one bout of diarrhea on Tuesday night and hasn't gone again since. Hasn't eaten a lot, either. He's had low energy, too.

Late last night he had a cup of pureed baby spinach (for iron) and a smoothie and said he felt better, but his calories were very low for the day, around a thousand.

Is this what remission looks like?
06-06-2013, 11:13 AM   #113
brahm
 
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I take it that your last comment was said tongue - in - cheek but just in case - to me remission is the absence of all symptoms. As far as the iron comment - I take a slow release iron supplement every day and find it takes care of the iron deficiency and definitely boosts my energy.
I keep on hearing that we all experience gains (remissions) and losses (relapses) and this is "normal" for the disease we have. Although I have never experienced an absence of symptoms for more than a few days, I have been feeling a lot better on the SCD diet and am hopeful for better days to come.
06-07-2013, 08:05 AM   #114
helena101
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I'm sure this has probably been discussed elsewhere, either on this thread or another one, but I want some advice on kefir making...
The GAPS book recommends making it much like yoghurt:
1) bringing milk close to the boil
2) adding the culture once the milk is cooled
3) fermenting for 24 hours at 38-41 degrees centigrade - I think that's about 105 Fahrenheit - (in a yoghurt maker).
But I have also heard that you don't need to heat the milk first, and that you can leave the kefir at room temperature to ferment.
Is this really the case? Those of you making your own kefir, do you have any tips or advice?
06-07-2013, 09:23 AM   #115
Amy2
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Is Campbell's tomato juice SCD legal? I read that it was, but I also read not to use any tomato juice made from concentrate. Campbell's tomato juice says From Concentrate, right on the can. Just wondering because my son got sick soon after eating it.

He seems to be back on track now, though. Whew!

Does anyone have a juicer?
06-07-2013, 11:09 AM   #116
Amy2
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Anyone recommend a good scd legal probiotic? My son is leaving for summer camp soon and he won't be able to have the yogurt for a few days.
06-07-2013, 04:28 PM   #117
MomRocksOut
 
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http://www.lucyskitchenshop.com/acidophilus.html

Acidophilus & Yogurt Capsules
Recommended for the SCD - does not contain bifidus


My son takes these when we travel. It's the only one I've found that is SCD compliant.
06-10-2013, 06:37 AM   #118
Paul Cronk
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I have now been on SCD for about 7 weeks. Firstly I felt much better but that wore off. Them we found a candida infection, eliminated that, felt better at first but that has worn off. Now I feel crap and am still on Peed 15 mg per day which is not really enough to feel comfortable. I am still losing weight despite managing to get through maybe 2000 calories per day on the diet. Got an Entero MRI next week because the last colonoscopy was clear. Round and round in circles - but today is bad mentally.

In WW2 my dad spent 5 years in a German POW camp in Poland then did the winter "long march" across Checkoslovakia towards allied lines. They didn't all make it. Days like this my dad pulls me out of the snow and tells me to keep walking. Pretty good trick for someone who died 33 years ago!
06-10-2013, 08:58 AM   #119
brahm
 
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Paul, in a way we are in a similar situation. My Crohn's diagnosis is "mild" and yet for the last 3 years I have been experiencing severe stomach cramps. I take 300 grams pentasa daily and that is all my doctors want to give me. I'm grateful for that since I really don't want to take immunosuppressant drugs but on the other hand I need relief from this constant pain.
In desperation I tried low dose naltrexone (LDN) as well as the pentasa and for a while got some relief, but all too soon the discomfort returned.
At my last visit to the doctors he suggested that my pain may be more related to "irritable bowl syndrome" rather than the crohn's and that reducing stress and worry should be something to concentrate on. At that time I had already been on the SCD diet for about a month and feeling a little better.
Since that visit I have continued with the diet a am experiencing less discomfort, better night sleeps, and overall a healthier mental attitude.
They say that if the diet doesn't help within a month it probably won't help to continue. Obviously it is not for everyone. But if your colonoscopy shows an absence of crohn's then I would look to other causes for the pain.
I don't know about you but constipation is a huge contributor to bowl discomfort. I found that a magnesium drink in the morning works wonders.
Good luck with your search for relief!
06-10-2013, 10:02 AM   #120
Paul Cronk
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Brahm, thanks. If my doc now doubts the diagnosis I have to at least consider the possibility it is something else. I favour leaky gut theory (whether Crohns or not). Glad I have MRI coming up to exclude or find alternatives.

Like you I don't want immunosuppressants but now I cannot have Imuran as no visible Crohns, but I do take pred which is worse. I am pretty sure the show will run and run but some do make it all the way to the other side!

Pentasa worked for me for a year. Then a flare with pred for 5 weeks followed by my only ever remission for 3 months then flare then Humir worked six months (but gave me bad flu) then only pred works. Probably a fairly classical progression except for the disappearance of the ileitis. We are all different in here as much as outside.
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