crohnsinct
Well-known member
- Joined
- Mar 10, 2012
- Messages
- 6,469
Most of you know the background but if you are interested here is the history https://crohnsforum.com/threads/heard-from-doc-today.35732/page-12.
Basically my 20 year old is being told there aren't any more pharmaceutical options that will work for her. She is on Entyvio and she is at about 70% now so it is doing something but it needs help in order for her to avoid surgery. Plus she is on double dose and insurance isn't likely to keep approving that and the concern is what do we do as she fully tapers steroids and entocort and Entyvio goes back down to 300mg?
So we are trying strict SCD under the guidance of our GI and a nurse practitioner who has used the SCD for her husband who has had Crohn's for 17 years and has used the diet exclusively for 15 years and maintained remission. She has counseled many patients on the diet and walks the walk so I feel we are in good hands there.
She explained the diet is a therapy and just like all therapies it might work and might not but it can't hurt so we figure it is worth a shot. I happen to have another daughter with Crohn's and a type 2 diabetic husband so I might get a lot of bang for my buck here.
We did the intro but only for 3 days as she was already losing a good deal of weight and the SCD diet generally causes weight loss and she doesn't have a lot to spare. Weight loss also causes her to flare terribly. Plus she is only home 2 weeks and her GI wants her to have the "mommy" support with regards to finding recipes that work etc. Intro varies by person anyway and depends how severe you flare is also. Our NP told us her husband just jumped full on into the diet, no intro phase but she didn't advise this for us.
We also didn't do the intro as described in BTVC (Breaking The Vicious Cycle book) but stuck with easily digested foods and stuck as close as possible to BTVC. The whole family is doing the diet. We are going to be strict with it and then if she achieves remission and after some time in remission we might add some SCD "illegal" foods but most likely only those on the modified version of the diet. Things like oatmeal, maple syrup....not the big offenders like wheat and sugar.
We are also going to add a food a day instead of a food every 2 days as described in BTVC, again in order to build her repertoire quickly before going back to school.
I thought I would detail our journey here in case it helps anyone else or in case you are just plain interested.
I will from time to time post our menus and recipes in case that helps anyone. But also, I find these threads a sort of medical journal and it helps me remember what happened when etc.
So for the first day we ate:
Scrambled eggs (just the eggs no milk)
Shredded cheddar cheese - we bought a block of cheese and shredded it ourself. You have to be careful with packaged shredded cheese as they might use anti caking agents and those are SCD Illegal.
Sliced avocado
Baked apples - peeled...that is important in intro stage. We added cinnamon and nutmeg...also have to be careful with some powdery spices and make sure anti caking agents haven't been added. Added a bit of honey to them.
Bananas
Ground beef patty w/shredded cheddar
Roasted zucchini - peeled with olive oil and salt. O LOVES this and eats it like candy
More sliced avocado
Homemade chicken soup - drained out the onions and celery kept in the chicken and carrots
Pure apple cider
Tropicana OJ - SCD legal if you buy the one that does not have Vitamin D or Calcium added. Read the labels....only 100% juice.
Second day:
Pretty much the same except we ate Roasted butternut squash instead of zucchini.
Third day: repeat of day 1.
INTO OVER! HURRAY! We planned it to end in time for Christmas Day. So now we get to add a food. O picked almond flour because that opens up baking.
I also wanted Christmas to be special (we are Italian so food makes everything special in our eyes) so I searched for SCD legal bacon. It is hard to find. No sugar, no fenugreek and no celery powder (remember those darned caking agents). You could call the companies and ask them if their celery powder has caking agents but it was the weekend and I didn't have time plus I have trust issues. I found this one but it isn't stocked in stores near me https://pedersonsfarms.com/2017/01/06/uncured-no-sugar-hickory-smoked-bacon/. So I thought I would give prosciutto a try. Just pork and salt. IT WORKED! Tastes like bacon! And some would say a bit healthier. Heat oven to 400, I cut it to bacon size and baked it for 20 minutes. Took it out for a few minutes and it crisped right up. My picky 25 year old said that if a restaurant served her this a bacon she wouldn't even know the difference. Being an ex vegan, I have a recipe for mushroom bacon but would have to fiddle with it a bit to make it SCD legal so will let you know what I come up with.
There is a lot of discussion around bacon in SCD circles. Some say you could have it with sugar but only a little and once a week or month etc. I chose not to even try it since we are so new. The prosciutto worked fine and we shouldn't have it that often anyway.
We didn't love the baked apples and were really missing raw fruit so we also had apples slices with the skin (allowed in second stage). This probably means we are adding two foods as even though she was eating apples they weren't raw and they were peeled but oh well.
We found SCD legal English Muffins BUT they were made with almond and coconut flour so now we are probably up to three foods. Not illegal but will make it more difficult to decipher if she has a problem, which food caused it. I will jump off that bridge when I come to it....It is Christmas!
So today we are feasting!
Scrambled Eggs
Avocado slices
Apple slices
Prosciutto "bacon"
OJ
Apple cider
English muffins - this brand https://eatmikeys.com/products/original
Chicken Soup
Chicken piccata (made with almond flour)
Roasted zucchini
Carrots
I was out shopping and needed an emergency snack. I found crackers made of cheddar cheese and munched on them. I am assuming legal but I have no idea if they use shredded cheddar that might have had a caking agent or not. I have a friend who works for the company. I will ask them and get back to you. Brand name is Whisps.
I might try to make an apple cake with the almond flour if I have time (if it turns out good I will post recipe)
For those of you wondering why I haven't mentioned the yogurt yet, it is because my machine just got here yesterday! We put in a batch and it will be ready at 11 p.m. tonight! We used Dannon whole milk plain yogurt as our starter. I will let you know how it goes!
The premade items I mention are expensive. I am going to try to make more at home but with the holidays and just starting this journey I bit the bullet and went with the pros. I also didn't want to try recipes and have them be complete failures as that might turn her off from the whole thing.
She is only down one pound from before starting. She was already losing weight so not ready to say it is SCD and actually her weight loss has slowed since starting so we will see on that front.
I hope you are all enjoying this holiday season and wish you all a Happy New Year.
Basically my 20 year old is being told there aren't any more pharmaceutical options that will work for her. She is on Entyvio and she is at about 70% now so it is doing something but it needs help in order for her to avoid surgery. Plus she is on double dose and insurance isn't likely to keep approving that and the concern is what do we do as she fully tapers steroids and entocort and Entyvio goes back down to 300mg?
So we are trying strict SCD under the guidance of our GI and a nurse practitioner who has used the SCD for her husband who has had Crohn's for 17 years and has used the diet exclusively for 15 years and maintained remission. She has counseled many patients on the diet and walks the walk so I feel we are in good hands there.
She explained the diet is a therapy and just like all therapies it might work and might not but it can't hurt so we figure it is worth a shot. I happen to have another daughter with Crohn's and a type 2 diabetic husband so I might get a lot of bang for my buck here.
We did the intro but only for 3 days as she was already losing a good deal of weight and the SCD diet generally causes weight loss and she doesn't have a lot to spare. Weight loss also causes her to flare terribly. Plus she is only home 2 weeks and her GI wants her to have the "mommy" support with regards to finding recipes that work etc. Intro varies by person anyway and depends how severe you flare is also. Our NP told us her husband just jumped full on into the diet, no intro phase but she didn't advise this for us.
We also didn't do the intro as described in BTVC (Breaking The Vicious Cycle book) but stuck with easily digested foods and stuck as close as possible to BTVC. The whole family is doing the diet. We are going to be strict with it and then if she achieves remission and after some time in remission we might add some SCD "illegal" foods but most likely only those on the modified version of the diet. Things like oatmeal, maple syrup....not the big offenders like wheat and sugar.
We are also going to add a food a day instead of a food every 2 days as described in BTVC, again in order to build her repertoire quickly before going back to school.
I thought I would detail our journey here in case it helps anyone else or in case you are just plain interested.
I will from time to time post our menus and recipes in case that helps anyone. But also, I find these threads a sort of medical journal and it helps me remember what happened when etc.
So for the first day we ate:
Scrambled eggs (just the eggs no milk)
Shredded cheddar cheese - we bought a block of cheese and shredded it ourself. You have to be careful with packaged shredded cheese as they might use anti caking agents and those are SCD Illegal.
Sliced avocado
Baked apples - peeled...that is important in intro stage. We added cinnamon and nutmeg...also have to be careful with some powdery spices and make sure anti caking agents haven't been added. Added a bit of honey to them.
Bananas
Ground beef patty w/shredded cheddar
Roasted zucchini - peeled with olive oil and salt. O LOVES this and eats it like candy
More sliced avocado
Homemade chicken soup - drained out the onions and celery kept in the chicken and carrots
Pure apple cider
Tropicana OJ - SCD legal if you buy the one that does not have Vitamin D or Calcium added. Read the labels....only 100% juice.
Second day:
Pretty much the same except we ate Roasted butternut squash instead of zucchini.
Third day: repeat of day 1.
INTO OVER! HURRAY! We planned it to end in time for Christmas Day. So now we get to add a food. O picked almond flour because that opens up baking.
I also wanted Christmas to be special (we are Italian so food makes everything special in our eyes) so I searched for SCD legal bacon. It is hard to find. No sugar, no fenugreek and no celery powder (remember those darned caking agents). You could call the companies and ask them if their celery powder has caking agents but it was the weekend and I didn't have time plus I have trust issues. I found this one but it isn't stocked in stores near me https://pedersonsfarms.com/2017/01/06/uncured-no-sugar-hickory-smoked-bacon/. So I thought I would give prosciutto a try. Just pork and salt. IT WORKED! Tastes like bacon! And some would say a bit healthier. Heat oven to 400, I cut it to bacon size and baked it for 20 minutes. Took it out for a few minutes and it crisped right up. My picky 25 year old said that if a restaurant served her this a bacon she wouldn't even know the difference. Being an ex vegan, I have a recipe for mushroom bacon but would have to fiddle with it a bit to make it SCD legal so will let you know what I come up with.
There is a lot of discussion around bacon in SCD circles. Some say you could have it with sugar but only a little and once a week or month etc. I chose not to even try it since we are so new. The prosciutto worked fine and we shouldn't have it that often anyway.
We didn't love the baked apples and were really missing raw fruit so we also had apples slices with the skin (allowed in second stage). This probably means we are adding two foods as even though she was eating apples they weren't raw and they were peeled but oh well.
We found SCD legal English Muffins BUT they were made with almond and coconut flour so now we are probably up to three foods. Not illegal but will make it more difficult to decipher if she has a problem, which food caused it. I will jump off that bridge when I come to it....It is Christmas!
So today we are feasting!
Scrambled Eggs
Avocado slices
Apple slices
Prosciutto "bacon"
OJ
Apple cider
English muffins - this brand https://eatmikeys.com/products/original
Chicken Soup
Chicken piccata (made with almond flour)
Roasted zucchini
Carrots
I was out shopping and needed an emergency snack. I found crackers made of cheddar cheese and munched on them. I am assuming legal but I have no idea if they use shredded cheddar that might have had a caking agent or not. I have a friend who works for the company. I will ask them and get back to you. Brand name is Whisps.
I might try to make an apple cake with the almond flour if I have time (if it turns out good I will post recipe)
For those of you wondering why I haven't mentioned the yogurt yet, it is because my machine just got here yesterday! We put in a batch and it will be ready at 11 p.m. tonight! We used Dannon whole milk plain yogurt as our starter. I will let you know how it goes!
The premade items I mention are expensive. I am going to try to make more at home but with the holidays and just starting this journey I bit the bullet and went with the pros. I also didn't want to try recipes and have them be complete failures as that might turn her off from the whole thing.
She is only down one pound from before starting. She was already losing weight so not ready to say it is SCD and actually her weight loss has slowed since starting so we will see on that front.
I hope you are all enjoying this holiday season and wish you all a Happy New Year.
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