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01-24-2013, 09:30 PM   #1
Charleigh
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Incredible E

I really wish I would have started a thread like KWalker for E. If for nothing else, I forget to write things down in all the busyness. I have way too much going on to take all of the beautiful food pics like on KWalker's thread, but I thought it might be nice to do a simpler version here just to track E's progress. Also, I have had members message me wanting more details on E and referring them to this thread will be easier than retyping it each time

First of all, a disclaimer....we are fairly new to Crohn's and we are fairly new to SCD. I am not implying that diets work for everyone or that anyone should choose diet rather than medication. I am simply logging our personal experience.

I am not planning to log daily life for E, but instead I will update his weight and symptom improvements or setbacks in posts below. Also, I will post any labs (whether they are improved or not).

To start with though, how did we get here?

E began the SCD diet on November 23rd, 2012
In the spring of 2012, he weighed 91 pounds.
E began having joint pain and times of weakness when he was 2 years old. He never had any intestinal issues to lead us to think it was Crohn's.
In March he began having bouts of diarrhea that was getting worse week by week. During this time, E's joint pain was getting significantly worse. We thought it was just a virus, then we thought maybe a parasite, and in July our ped. decided to pull some labs. Some of E's inflammatory markers were elevated so he referred us to a ped. GI. We delayed a bit on that appointment for a trial of gluten free (about 6-8 weeks). E improved some on a gluten free diet, but not fully. E had his exploratory procedures and diagnosis in November. It was confirmed Crohn's. Because of the improvement on a GF and dairy free diet, we decided to research diets before automatically going to meds. We came across the SCD We are following the diet exactly except for the following:
No beef
Limited raw fruits and veggies
No dairy (so no SCD yogurt)
No legumes (peanuts, beans)

When we began the diet E weighed 76 pounds. I will be honest, the first 2 weeks were very rough for us and E dropped down to 72 pounds. I was definitely a bit panicked. We started with the intro diet and a slow introduction of foods (as described in pecanbread.com and not in the actual book). The only problem with this method is that the variety of foods was quite limited. Once we began to introduce nut butters and nut flours, etc we started seeing a great improvement in strength and weight.

E now weighs 82 pounds. We have a bit to go to reach our starting weight, but E has put on 10 pounds in the past 6 weeks. I will take that!

I am curious to see how E's labwork will track after being on this diet for a while. I know that it can take 6-12 months to see changes so I am trying to be patient.
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Last edited by Charleigh; 05-14-2013 at 06:36 AM.
01-24-2013, 09:34 PM   #2
Charleigh
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So this is where we stand right now...
1/22/2013
1-2 bowel movements per day, usually solid but occasionally loose.
Abdominal cramping is pretty rare these days
Previously E would go at least 5-6 times per day, extremely watery and foul smelling, and with much pain and cramping.
Joint pain = 0
Weight = 82 pounds

Labwork on 1/2/13
SED Rate 35 (range 0-10)
C-RP 34.6 (Range 1-3)
Platelets 552 (range 165-353)

He has some other labs that are slightly out of line but I will not list all of those.

2/17/13
This marks 3 weeks with no D
E had just a few slightly loose stools when he had the flu about a week ago, but that is it. He has been down to 1-2 solid (completely solid) BMs per day.
His weight has stalled at 82 pounds but that is within the low normal range for his age/height so I think it might just be his new normal. I feel good about this.

3/2/13

E now weighs 84 pounds! Yay


3/6/13

We had our appointment today. The doctor is very pleased. E is up 5 pounds since his last appointment and he has grown 3/4 inch
And
drumroll........
This was our first stool test with no blood in E's stool!




3/15/13

The doctor only gave me E's c-rp rate and he didn't even test SED for some reason. It is still elevated, but lower than it has been in quite a while.

C-RP - 28.3

Update 4/21/13
E turned 12 on the 16th!
Weight = 87 pounds

6/4/2013
E was another 1/2 inch taller at his visit
Weight is down to 85 pounds

7/2/2013
E has been struggling a little. Weight is down to 79 pounds

SED increased to 38
C-RP increased to 37.4

We did add potatoes a few months ago and I don't know if that is to blame?
It is very discouraging, but we are committed to this diet!!!

10/10/13

E is still med free. We could not get his dr to prescribe LDN

E has been on the auto-immune paleo diet for 2 months. What we called SCD we altered to be a basic paleo diet. We added in the auto-immune aspect (mainly no nuts, no eggs, and no white potatoes We are seeing fantastic results.
Here are his lab results after 6 weeks on AIP....

SED decreased to 32
C-RP decreased to 19

A disclaimer here - we also add in a supplement that is supposed to help with inflammation. I think the combination of diet + the supplement is really helping E.

E now weights 100 pounds!
He has grown a ridiculous amount and is now 5'2
His symptoms are great.

So far, we are happy.


10/25/13


Still plugging away with a strict Paleo Auto Immune Diet and the anti-inflammatory supplement.

Dr pulled a few labs and I was absolutely flabbergasted.

C-RP- 1.9 - NEVER thought I would see that number in the single double digits.

Last edited by Charleigh; 10-29-2013 at 08:49 AM.
01-24-2013, 09:59 PM   #3
rollinstone
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Glad to hear he's responding so well to the diet it inspires me to go back onto it
02-01-2013, 08:30 AM   #4
Charleigh
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We began Acidophilus (SCD safe brand) on 1/27.

Until then, E's BM's were incredibly improved. It would look something like this....he would have a day with only 1-2 solid bowel movements and then the next day he would have 1 loose BM and one semi-solid BM, the next day back to solid, etc.

E has not had anything close to loose since Sunday. Usually only one BM per day. Now combine that with the fact that we have added in some more veggies and raw fruits (which even 2-3 weeks ago didn't work). I feel like this is a huge milestone for us.

This week he had:
raw blueberries
raw blackberries
cooked broccoli
cooked peppers
raw romaine lettuce

AND NO DIARRHEA WHATSOEVER

I am ecstatic!!!!!!!!!
02-01-2013, 12:15 PM   #5
helena101
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That really is inspiring! Congratulations!
Do you have any lab results from around the time he started the diet? I agree it can take time to see any improvement in the numbers, and the fact that his symptoms are so much better is amazing. Are his sed rate, crp and platelets fairly steady then over the last couple of months?
02-01-2013, 02:10 PM   #6
Charleigh
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That really is inspiring! Congratulations!
Do you have any lab results from around the time he started the diet? I agree it can take time to see any improvement in the numbers, and the fact that his symptoms are so much better is amazing. Are his sed rate, crp and platelets fairly steady then over the last couple of months?
His rates were checked in November and they were slightly lower than the January readings (but I know that rates can fluctuate a certain degree from day to day). I am choosing not to worry too much about the levels until it has been 6 months. I will be curious to see if his recheck in March shows the results trending down. I can't imagine that his symptoms would be so improved and the labs not reflect that eventually.
02-01-2013, 02:12 PM   #7
helena101
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I agree, the symptoms improving so much is a great sign. Hang in there.
02-07-2013, 03:59 PM   #8
Charleigh
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I am constantly amazed at the difference good bacteria is making. At first, we didn't include the yogurt or good bacteria and we did see improvement, but the good guys have changed the game. E has not had any D since he started acidophilus. I have also started making my own coconut kefir. Funny, 12 hours after his first kefir smoothie E came to me and said, "wow, I just thought I was solid (since it was no longer Diarrhea), but now I am totally and completely like-I've-never-had-Crohn's solid. lol
02-07-2013, 06:27 PM   #9
rollinstone
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I am constantly amazed at the difference good bacteria is making. At first, we didn't include the yogurt or good bacteria and we did see improvement, but the good guys have changed the game. E has not had any D since he started acidophilus. I have also started making my own coconut kefir. Funny, 12 hours after his first kefir smoothie E came to me and said, "wow, I just thought I was solid (since it was no longer Diarrhea), but now I am totally and completely like-I've-never-had-Crohn's solid. lol
That is good news! How do you make the kefir if you dont mind me asking, id like to try n make some
02-07-2013, 06:30 PM   #10
KWalker
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That's awesome Charleigh and E!

Where brand is that acidophilus? Freeda? Is any brand allowed?
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Humira
Methotrexate (oral)
Methotrexate (injections)
Cipro
Flagyl

Current Treatment:
200mg Simponi, Psyllium
02-07-2013, 06:49 PM   #11
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How do you make coconut kefir? Would love to add it to our SCD approved foods.
02-08-2013, 06:09 AM   #12
Charleigh
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KWalker - It is actually by Klaire labs. There are several approved brands of acidophilus. I will see if I can find that list and link it to you. I think the concern would be fillers and also Elaine recommends a lower count than some brands. 3,000 billion whereas some beefed up brands claim 10,000 plus billion



I make my own coconut milk by blasting dried coconut (I use a fine shredded)
with water on high in my Vitamix for at least 3-4 minutes. I then strain any particle off and simply add the coconut milk to a glass jar with the kefir grains and let it sit out on the counter for 24 hours ~ easy peasy. It isn't like yogurt where it has to be kept at a perfect temp, etc. Just room temp. I was fortunate enough to get kefir grains from a friend. I think you can order them online though. It is suggested that if you use a dairy free milk you make one batch in real milk every week or two since the kefir grains stay more active in real milk (just to insure they stay good). When the kefir is done, you strain off the grains and store them in milk in your fridge. So you keep using the same grains and they grow some. Maybe I will eventually have enough to share


Here is link to the coconut I use

http://www.amazon.com/Lets-Do-Organi...s=coconut+fine

Last edited by Charleigh; 02-08-2013 at 06:29 AM.
02-08-2013, 06:47 AM   #13
Charleigh
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Here are some of the approved brands

http://www.giprohealth.com/scdophilusnext.aspx

http://www.lucyskitchenshop.com/acidophilus.html

http://kirkmanlabs.com/ProductKirkma...ypoallergenic/

Here is the one we are using

http://www.klaire.com/prod/proddetail.asp?id=K-LAC

We didn't buy from that website though.


The capsules should be kept cool. Make sure they are kept refrigerated and not in a hot warehouse. Also, do they ship along with an ice pack? If they don't then you need to consider the weather. It might be beneficial to order a larger amount before the weather warms (enough to make it through summer), unless the company ships with ice. Just my rambling thoughts.

Also, I bet there are other brands that are safe. Elaine isn't even alive anymore. These are the brands she considered safe at the time though.
02-08-2013, 07:17 AM   #14
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Thanks a lot! I'll definitely look into it. I found out that Elaine actually did all her studies and research for her PhD pretty close to me. I was going to apply to the University she went too but it's not the greatest (don't tell her haha)
02-08-2013, 07:22 AM   #15
Charleigh
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haha, your secret is safe with me.

I bet at least one of those brands can be found in Canada or shipped there?
02-09-2013, 06:07 PM   #16
partlycloudy
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Charleigh, I got a big kick out of the excitement y'all felt about the raw veggies and fruit. I still remember my first raw salad. I was SO excited after having no reactions both immediately (usually cramped me) and later with D. You and Kwalker have inspired me to get back on SCD as of Monday. Maybe we can all share recipes here too.

Have either of you read "Two Steps Forward, One Step Back" by Tucker Sweeney? He was dx'd with UC and it's the story of his struggles and healing on the SCD. I found it very inspiring.
02-09-2013, 06:44 PM   #17
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Like I said in another thread, I'm so happy/excited for you partlycloudy! I would love to share recipes/ideas with you. I haven't been on for a little while, but Pinterest is really useful for finding recipes as well. It's got everything you could ask for.

I've never read that book so I should look into it. I've got two books on the go right now and just bought "The Inconvenient Truth" truth today but I've been really slacking with both reading and keeping my SCD thread updated
02-09-2013, 07:53 PM   #18
partlycloudy
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And like I said, lol, Kw, I hope you feel better soon. If any of you like breakfast sausage I have a good SCD-legal version that mimics Jimmy Dean pretty well. I'll post it the GAPS/paleo/SCD thread.
02-11-2013, 06:56 AM   #19
Charleigh
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Charleigh, I got a big kick out of the excitement y'all felt about the raw veggies and fruit. I still remember my first raw salad. I was SO excited after having no reactions both immediately (usually cramped me) and later with D. You and Kwalker have inspired me to get back on SCD as of Monday. Maybe we can all share recipes here too.

Have either of you read "Two Steps Forward, One Step Back" by Tucker Sweeney? He was dx'd with UC and it's the story of his struggles and healing on the SCD. I found it very inspiring.
I am very glad you are joining us. It isn't an easy diet and it is great to have supportive people. The more, the merrier!
02-15-2013, 12:05 PM   #20
Charleigh
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With all of the controversy surrounding plain baking cocoa (with no additives) and the fact that it is allowed on GAPS and Paleo...we've decided to try it with E. We are only adding it to other SCD safe ingredients though. I will keep ya'll posted on how this works.
02-15-2013, 01:48 PM   #21
partlycloudy
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I'll be interested to see how E does with the cocoa and hope he does well. I'm not a chocolate person but would love having the choice regardless.
02-19-2013, 09:44 AM   #22
Charleigh
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E is doing great with the plain 100% cocoa. Still keeping my eye on him though.

I am constantly amazed at his improvement. For the last 7-10 days I have had to remind myself that he has crohn's. I completely forget. We don't talk about poop so much, I feel relaxed about it all, and he doesn't look so weak. No D, no stomach cramps, no joint pain, and the diet has become such a normal part of life. It is a nice place to be.

His weight isn't really picking up anymore, but he is now in the normal range for his age and height (low normal but normal). So I have decided not to worry about it in the least! I hope the doctor agrees
02-19-2013, 12:13 PM   #23
partlycloudy
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That's wonderful and so encouraging!
02-26-2013, 06:38 AM   #24
Charleigh
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From the time that E got sick until just recently he was always left out or behind when it came to physical activity. He would literally just sit and watch because he was too weak and tired to participate. If he tried to participate, he would get sick and his joints would hurt for days after. This is very difficult for any child, but especially a boy who loved paintball, the woods, and playing with his friends.
We were with a group of friends on Sunday afternoon and E's improvement really shined. He played flag football, team hide and seek in the woods, etc, etc. He played for hours and was never behind or sitting on the side lines. The fact that he ate his snacks out of a packed cooler was the only thing that set him apart and he didn't seem the least bit concerned about that. Not only did he keep up fine but I have heard not a single comment or complaint about joint pain! This is HUGE for us!
02-26-2013, 10:06 AM   #25
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That's awesome! Isn't it great to see our kids being "normal" again. SCD really is amazing.

FYI - talked with a mom who's daughter is on remi and methotrexate. They mainly eat out and processed junk at home - she's not grown of any substance over the last year (meds for 3yrs). And worried she's going to miss puberty (she's almost 17). I talked with her about SCD and she thinks it's just alot of work and her GI says diet doesn't matter

My rambling is just to say I'm so glad other are going down this road too. Makes you feel less alone! I know this is the right path for my 12 yr old.
02-26-2013, 11:01 AM   #26
Charleigh
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I am surprised at how many people will say it isn't worth it. Even if they are on meds and the meds aren't working. It honestly shocks me that food is so idolized in our culture that we will refuse to adjust our diet even if it saves us so much pain and medical problems. Wouldn't you think more people would at least give it a try?
02-26-2013, 11:20 AM   #27
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More than not, the people that knock it are A. Doctors who get paid to prescribe medicine and B. People who are too lazy to try it. Diet takes a lot of strength and determination and as sad as it is, our society is so focused on fast and easy they sacrifice their health for the benefit of fast food. Sure fast food is delicious, but we were talking about some ingredients that really go into fast food and I feel so much better knowing I'm not putting that crap into my body anymore. Do I miss it? Sometimes. Do I regret it? Not at all

I'm so envious of your children for having parents like you who commit so much time and effort to actually making your children healthy. You guys are setting your kids up for success later on by teaching them to eat healthy and then that will stick with them and they'll more than likely raise their children to follow that lifestyle.

You guys should both be so proud of yourselves and your children
02-26-2013, 12:20 PM   #28
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Charleigh, thanks for posting E's updates. I'm so excited for him that he gets to play with his friends without being tired of having joint pain. I've been having joint pain a lot over the last few months and have since learned it was due to my Crohn's. It has prevented me from running and exercising like I used to along with the fact that I barely had the energy to get out of bed and go to work everyday. I've only just started my journey on the SCD, but E gives me so much to look forward to. I can't wait to have my first solid BM!
03-03-2013, 07:16 PM   #29
Charleigh
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E is 84 pounds now! He shot up in growth all of the sudden too. Wow! I need to measure him but he now matches his sister so he has grown at least half an inch.

We have our next big appointment on Wednesday.
03-05-2013, 01:11 PM   #30
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Yeah for the 84 lbs! I'm guessing your appointment will go well since he's obviously improving - growth is a sure sign. Keep us posted! Love to see how SCD is helping our boys.

My son has grown 1/2" over the last 4 weeks! I'm so excited to see him thriving
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