Incredible E

[Charleigh]

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 :thumleft: 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! :thumright:

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.

 

[Charleigh]

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 :soledance:
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!

:dance::dance::dance::dance::dance:


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. :applause:

 

[rollinstone]

Glad to hear he's responding so well to the diet it inspires me to go back onto it

 

[Charleigh]

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 :dance:

I am ecstatic!!!!!!!!!

 

[helena101]

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?

 

[Charleigh]

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.

 

[helena101]

I agree, the symptoms improving so much is a great sign. Hang in there.

 

[Charleigh]

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

 

[rollinstone]

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

 

[KWalker]

That's awesome Charleigh and E!

Where brand is that acidophilus? Freeda? Is any brand allowed?

 

[MomRocksOut]

How do you make coconut kefir? Would love to add it to our SCD approved foods.

 

[Charleigh]

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-Organ...8&qid=1360321668&sr=8-2&keywords=coconut+fine

 

[Charleigh]

Here are some of the approved brands

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

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

http://kirkmanlabs.com/ProductKirkman/182/1/LactobacillusAcidophilus-Hypoallergenic/

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.

 

[KWalker]

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)

 

[Charleigh]

haha, your secret is safe with me.

I bet at least one of those brands can be found in Canada or shipped there?

 

[partlycloudy]

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.

 

[KWalker]

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

 

[partlycloudy]

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.

 

[Charleigh]

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!

 

[Charleigh]

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.

 

[partlycloudy]

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.

 

[Charleigh]

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

 

[partlycloudy]

That's wonderful and so encouraging!

 

[Charleigh]

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!

 

[MomRocksOut]

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 :ywow:

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.

 

[Charleigh]

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?

 

[KWalker]

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

 

[monirob]

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!

 

[Charleigh]

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.

 

[MomRocksOut]

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 :dance:

 

[Charleigh]

I have updated post #2

 

[Susan2]

So this is where we stand right now...
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!

:dance::dance::dance::dance::dance:

What great results!! You and E must be so thrilled.

It makes all the hard work worthwhile.

 

[Charleigh]

Yes, Susan....it does make it all worth it

 

[Charleigh]

updated #2 with c-rp results

 

[Beach]

It's been great to read E's updates & progress made. I have a nephew the same age. He just celebrated a birthday yesterday. Of the nephew group, he worries me a bit with health issues. He is a highly bright child, but has many allergies, and has been known to have stomach issues off and on. It concerns me that he might be susceptible to what his uncle has. With that hopfully small possibility, it's been wonderful to see your son doing well with successfully changing his diet, and to this point thriving.

Thought to mention, as the warmer weather continues, chances are E's crp results will drop. At least I've seen on another board people being able to lower their crp numbers with diet changes, similar to what has been done, and generating higher vitamin D levels. You have a good thing going, so adding vitamin D to reach a testing level above 50ng/ml might not be desired, but with summer sunshine and playing outside creating more vitamin D naturally, I suspect his CRP results are likely to drop.

 

[Charleigh]

Good thoughts, Beach, thanks We will hope that your nephew can avoid IBD!

 

[Tamanna]

I am so happy to know that your son is doing well with SCD diet. Could you please let me know what is the intro diet of SCD ? Could you please give few examples for one or two days intro diet? I would like to start it for my 14 years old daughter. I am giving her everything legal of SCD. It seems helping her but not fully......need the guidence for intro diet. Help please . Thanks.

 

[Charleigh]

I am so happy to know that your son is doing well with SCD diet. Could you please let me know what is the intro diet of SCD ? Could you please give few examples for one or two days intro diet? I would like to start it for my 14 years old daughter. I am giving her everything legal of SCD. It seems helping her but not fully......need the guidence for intro diet. Help please . Thanks.

We started with only applesauce, chicken, turkey, well cooked green beans, bananas, eggs, and 100% grape juice. It was a very limiting diet so it is not suggested for long. Just a few days. We found that by doing it this way and slowly adding in other foods we were able to see which foods E was not able to digest yet. As he has healed, his diet has expanded into almost a full SCD. He still doesn't seem to tolerate beef though

There are some great explanations on www.pecanbread.com

If you have more questions, feel free to PM or ask here.

 

[Charleigh]

I updated my stats post and E now weighs 87 pounds. He is getting stronger everyday and the diet is so second nature that we forget that he has crohn's He just turned 12 (on the 16th) and we had a party for him yesterday. He ran, he played, he kept up, he was.......normal. He ate a slightly altered dinner from everyone else and he had yummy chocolate almond flour cupcakes.
We introduced potatoes into his diet about 3-4 weeks ago and so far he seems to be doing great. Holding my breath on this one!

 

[KWalker]

I know I haven't been posting much in the SCD section or even much at all lately but I have been keeping up with E's progress and he continues to amaze me with how strong and determined he is. You should be very proud of him because he is going to be one of those adults that stand out above the rest.

 

[greypup]

I am SO excited to find this thread. I started my 16 yr old daughter on SCD this past week. She is on intro phase and has had chicken soup 3x day for 3 days. Today I introduced roasted turkey.

She was dx'd w/crohn's on a trip to ER April 8th. She stayed in the hospital until April 16th. She had an infection, fistula and obstruction. All three have healed and she has avoided surgery, thank goodness!

In six more weeks, they want to do an upper and lower scope. So until then we are moving off of IV TPN and on to SCD plus Elemental Diet.

Your posts are very helpful and encouraging!!! I would love to PM if that's okay.

Linda

 

[scooby100]

Love this thread + Incredible E journey and happy to see so many going through SCD path!
My daughter, 15 started SCD / GAPs 2 weeks back, after 1-2 months with a mix of SCD and enteral nutrition. (BTW - was thinking on starting teenagers thread - so they can exchange experiences and complaint to each other )
We follow GAPS intro diet, that is longer and probably tougher - but ensures slow introduction of foods and more healing time to the gut, based on plenty of broth and fermented foods.
Charleigh - I see that E is already on potatos - that is not exactly SCD legal...any special reason (besides the fact that its TASTY )
Keep up the good spirit!

 

[greypup]

Scooby,

We are just about to start Enteral Nutrition in combination w/SCD!

My 16 yr old daughter has been on SCD into diet for 4/5 days. So far so good ;-)

Let me know if you start teenage thread and I'll let he know.

Linda

 

[Charleigh]

I am SO excited to find this thread. I started my 16 yr old daughter on SCD this past week. She is on intro phase and has had chicken soup 3x day for 3 days. Today I introduced roasted turkey.

She was dx'd w/crohn's on a trip to ER April 8th. She stayed in the hospital until April 16th. She had an infection, fistula and obstruction. All three have healed and she has avoided surgery, thank goodness!

In six more weeks, they want to do an upper and lower scope. So until then we are moving off of IV TPN and on to SCD plus Elemental Diet.

Your posts are very helpful and encouraging!!! I would love to PM if that's okay.

Linda

So glad you found the SCD forum. Sorry for my delayed response, it has been a crazy week at our house Crazy in a good way though.

First of all, so sorry that you and your daughter are going through this. I am sure this has been a scary experience for you :ghug:

I sent you a PM but please feel free to message me or post any questions you have here on the forum. I try to check in at least twice a week.

 

[Charleigh]

Charleigh - I see that E is already on potatos - that is not exactly SCD legal...any special reason (besides the fact that its TASTY )
Keep up the good spirit!

E did a very pure SCD (without legumes or dairy though) for a few months. Drawing from my personal experience and the research/reports from so many who went on a paleo style diet (which includes potatoes) and found great relief from crohn's, we decided to give it a whirl. E will continue to avoid grain for quite some time. I have an autoimmune disorder and I respond very badly to grains, dairy, and legumes but I tolerate potatoes just fine. I think that everyone should remove potatoes for a long time until they are healed and symptom free. I know, I know.....Elaine would not approve but it seems to be working for E thus far and it opens up a great amount of calories for him.

 

[scooby100]

Linda - did u find Enteral nutrition that is SCD legal? We used Fortisip, that is what is supplied here - but at a glance - with the glucose etc...added to its not SCD legal.
Dont misunderstand me - enteral nutrition by its own (8 weeks) was very benefitial - but its combination with SCD - might impact SCD success as well.

 

[greypup]

Scooby,

Exactly what you said. We found that SCD and Elemental were cancelling each other out. Unfortunately, this wasn't information I had gathered before having my daughter start the elemental diet.

As of Friday last week, my daughter stopped the Elemental and is now doing just SCD.

The dietician I'm working with actually gave me a small, very small, published article that says

"In theroy, it is similar to an elemental diet, the thought being the foods easily absorbed provide bowel rest. The SCD, however, strives to use readily available foods such as fruits, meats, nuts, eggs, and vegetables. In addition, it is thought the SCD may alter gut flora and thus remove bacterial antigens thought to be responsible for the immune hypersensitivity seen in IBD."

from the Tennessee medicine : journal of the Tennessee Medical Association. 2004 Sep;97(9)
PubMed UI: 15497569

So we are going exclusively w/SCD.

 

[Charleigh]

Scooby,

Exactly what you said. We found that SCD and Elemental were cancelling each other out. Unfortunately, this wasn't information I had gathered before having my daughter start the elemental diet.

We were looking at both Elemental and SCD when E was first diagnosed. We also decided not to go the elemental route since they can't be done together. I couldn't find a source of elemental nutrition that didn't cancel out SCD because of ingredients. If E didn't succeed on SCD, elemental was going to be our second option.

 

[scooby100]

Charleigh - recall that E is still sensitive to diary / SCD yogurt.
Did u try to make the yogurt from goat milk?
its usually a much more tolerated milk and after 24-30 yogurt fermentation - should be even easier to tolerate.
We tried it - and so far so good.

 

[Amy2]

When we learned that EEN had a documented track record of putting kids into remission, we wanted to try that before starting our son on the SCD.

Also, our son's doctor was against him eating more than 20% food, so we would not have had his support, had we jumped into the SCD before our son achieved remission.

He's a nice guy, but I'm not sure he's completely supportive now. We're sort of a curiosity to him.

 

[Charleigh]

We're sort of a curiosity to him.

I am sure E's doctor would say we are a very strange curiosity too

 

[Charleigh]

Charleigh - recall that E is still sensitive to diary / SCD yogurt.
Did u try to make the yogurt from goat milk?
its usually a much more tolerated milk and after 24-30 yogurt fermentation - should be even easier to tolerate.
We tried it - and so far so good.

We haven't tried that. We tried goat's cheese and it seemed a little touchy so we backed off. I have considered trying it again though.

 

[Susan2]

I am sure E's doctor would say we are a very strange curiosity too

My GI thinks that I am a strange curiosity, too, but he's happy that the Blood Type Diet works for me. Once he realised that I was eating a full range of types of food (and was keeping my Crohn's in "remission"), he stopped actively opposing it.

 

[greypup]

It's sad to me that we are the curiosity, the ones who understand that food can play major roles in our better health. I hope and pray that in our children's adult lifetime that physicians will begin to embrace this and that it will begin in medical school. I can hope, can't i?!?

 

[Amy2]

Many doctors know very little about nutrition. My pediatrician asked how my vegetarian children were getting enough protein every year. If you know anything about nutrition, you know that is a very ignorant question. And although I know diet can play a major role in our health, I'm still skeptical of the SCD.

I am giving it my all for my son, but it's not like I fully believe in it. It seems to offer a bit of a placebo effect, if nothing else and I don't see that it's hurting him, but who knows if it has helped him? EEN only recently put him into remission and he would probably still be there, no matter what he was eating, this early in the game. After diagnosis, a lot of things in his life changed all at once, so it's hard to give too much credit to any one thing.

Unfortunately, I believe the blood-type diet is total b.s., though (if it's the one that says type A's can be vegetarian, while type O's need to eat meat etc.)

 

[Susan2]

You might believe that the BTD is bull-****, but I have been in remission for 13 years, with no medication, after having severe Crohn's for 30 years, resulting in a total proctocolectomy. I started the BTD after my last (of many) operation, finding that it was the only thing to explain why, in the words of my GI and my own experience, "dairy saved my life".

It's far too easy to dismiss something as "bull-****", but that's your prerogative.

 

[Amy2]

What makes you sure it's the diet?

My daughter has been on the SCD for 7.5 years and has been symptom and drug-free for the whole time. She credits the SCD because if she cheats too much, she starts to have symptoms again.

My opinion about the blood-type diet was formed many years ago when I belonged to a vegetarian board, where the diet was debated extensively, with one of the smartest, most thoughtful people I have ever known, arguing against it.

Purely anecdotal, but when our family went vegetarian around 1990, I had seemingly no health benefit. My husband on the other hand felt MUCH better and his cholesterol dropped, etc. I'm type A and he's type O.

I'm also Norwegian and my body seemed to handle meat and grease easily (though I oppose animal products for ethical reasons). My husband is a Jew who did not handle meat and grease very well and "never felt so good" as when he gave them up.

 

[Charleigh]

Many doctors know very little about nutrition. My pediatrician asked how my vegetarian children were getting enough protein every year. If you know anything about nutrition, you know that is a very ignorant question. And although I know diet can play a major role in our health, I'm still skeptical of the SCD.

My healthiest child decided, on her own, to become a vegetarian at the age of 5. I thought it was a "phase" so I humored her. She will be eleven in a few months and she hasn't had a bit of meat since. I don't think that soy is healthy so I don't regularly allow her to have soy meat replacements. She has a Boca type burger maybe 3 or 4 times a year and that is it. We don't stress about protein intake. Many people make comment about her "model like" shape. She is growing like a weed and is almost as tall as E and her older sister. She seems to have no adverse effects in her growth or development even though I have never counted or pushed protein. She is picture perfect health.

 

[Amy2]

Your daughter must be really bright to have made that decision at age 5.

I eat soy, but I try not to overdue it (on anything) and I usually eat it in the form of tofu, not processed veggieburgers, etc., but I do love them, especially Gardein frozen foods. I really like the Sunshine Burger which has no soy, though and seems less processed.

It's almost impossible to get enough calories and NOT get enough protein, as it's in pretty much everything.

 

[Charleigh]

It's almost impossible to get enough calories and NOT get enough protein, as it's in pretty much everything.

I agree! She gets plenty of calories and she is literally perfectly shaped, not too skinny, but not a bit chunky either. She said it was because of her love for animals, which she has an unusual love for, but I think it was also a deep intuition on her part. She battled a great amount of stomach problems until she stopped eating meat. I have a suspicion that she simply doesn't digest protein like a normal meat eater does. She hasn't had stomach problems since and it has been almost 6 years. She is the only person in our family that seems to digest dairy too and other than her meat restriction she really seems to have no other restrictions. She is wired different than the rest of us I suppose

 

[Amy2]

I tried to go veg at 15 in a meat and potatoes household, with no support and lasted about 4 days. I didn't have clue what to eat.

If only the internet had existed back then...

 

[Susan2]

What makes you sure it's the diet?

Of course I can't "prove" it, any more that anyone of us can "prove" what is affecting the progression of our disease - whether it be medicine, diet, surgery, any other medical treatment, meditation, yoga, exercise, herbal concoctions, witchcraft or the hand of God.

What I do know is that:

1. For 40 years from the age of 17 or 18 I had acute symptoms of Crohn's Disease resulting in more than 30 hospitalisations, about 10 operations of various sorts (including resections, scar removal, fistula treatment, "unkinking" of my intestines, etc, etc), plus simple rehydration, enteral feeding and so on. I weighed about 40kg (88 pounds) and am 67cm (5'6") tall. I now weigh 60kg.
2. In 2000 I finally had a proctocolectomy.
3. Since then, for over 13 years, I have been on no medication and have had no return of the disease in any measurable way. This is not unknown or impossible, but it is not common nor expected.
4. I started on the Blood Type Diet immediately after I had recovered from the actual proctocolectomy and have stayed on it (with some modifications because of my compromised intestinal system - having lost all my large and about one third of my small intestines).
5. I have exhaustive blood and other tests annually and have extremely good results for all but VitD, including those common bugbears for Crohn's patients - B12 and iron. Both my GI and my GP always express surprise at the results when they come in.
6. If I go off the BTD, I start experiencing diarrhoea and stomach pains, so I now do that as little as possible.
7. I travel extensively, including such places as Botswana, Kenya, Tanzania, Jordan, Egypt, Morocco, Ecuador, the Galapagos Islands, Japan as well as Europe, North America and within Australia. I have to be very careful when overseas with my food choices and with hygiene, and have experienced bouts of diarrhoea and vomiting, but never enough to have to take antibiotics. I go walking, climbing, snorkelling; I volunteer for conservation and environmental projects.

So no, I am not "sure" nor can I "prove" that the BTD is beneficial to me but, as far as I am concerned, "if it looks like a duck, quacks like a duck and walks like a duck, it's a duck".

 

[Amy2]

Not sure why you are being so defensive. If I found a diet that worked for my son, I would not care if others thought it was completely ridiculous.

Only doubt would make me insecure about it.

I thrived on meat and only gave it up for ethical reasons, husband wasn't opposed to it for ethical reasons, but when he tried going without it, he felt better within a few weeks and like I said, he's type O and I am type A.

Yet, I'm happy that you found something that works for you!

 

[Susan2]

Not sure why you are being so defensive. )

I'm not in the slightest defensive about following the BTD. I have mentioned it on a number of occasions on this site, but don't try to push it on others.

You claimed that it was ******** , asked why I was sure and, now that I have explained fully, you retreat into more name-calling.

There are a number of other BTD followers on this site, but they have received the same treatment, so now keep quiet.

 

[Charleigh]

Not sure why you are being so defensive. If I found a diet that worked for my son, I would not care if others thought it was completely ridiculous.

Since this is my thread, can I take a moment to say that this is a "support" forum and we really should try to be supportive of others and their choices. We should understand that what works for one might not work for another.
If I said that a vegetarian diet was bullsh*t, you would be on the defensive too. Amy2, your tone with Susan2 is simply unnecessary. Just agree to disagree and move on.

 

[Amy2]

I'm not in the slightest defensive about following the BTD. I have mentioned it on a number of occasions on this site, but don't try to push it on others.

You claimed that it was ******** , asked why I was sure and, now that I have explained fully, you retreat into more name-calling.

There are a number of other BTD followers on this site, but they have received the same treatment, so now keep quiet.

Name calling? Please show me where I have ever done that.

I'm scared and frustrated with my son's disease and the fact that I have to filter through $ making schemes, disguised as health benefits and cures.

But again, I am happy that you found something that works for you. I truly am.

 

[Susan2]

Thanks Charleigh.

I would consider neither SCD nor BTD to be $-making schemes. True, you can buy books for each of these but you can also get, free on the web, all the information necessary. BTD and, I think, SCD have official websites where you can join in discussions and ask questions. Even in areas where membership is required, it is free, as it is on this site. There are SCD- and BTD-friendly medical practitioners and other health professionals but they are not connected to the founders and developers of the particular diets; they just believe that there is some small or large degree of benefit in following the particular diet.

 

[Jennifer]

If your diet shows improvement for you by reducing or eliminating symptoms and your test results come back good then stick with it. There's no reason to debate on the diets that are out there because what works for one person wont work for everyone. If it didn't work for you then that's a shame but that doesn't mean it wont work for someone else. There are many medications that didn't work for me but I don't deter people from trying anything that might help them.

I didn't see any name calling in here just a bit of a spat that seems to be over now so let's keep it that way.

 

[Charleigh]

I've updated my stats post

 

[scooby100]

Hi Charleigh - how E is doing? Just saw that u are looking for LDN as an additional treatment and was wondering the reason. thx!

 

[helena101]

So sorry the results were disappointing...
I noticed that E's CRP in march was better, so maybe it is the potatoes, like you said. It does seem worth removing them to see if there is any improvement.

 

[Susan2]

Sorry to hear that E is losing weight, Charleigh, and that the results were not so good.

Unfortunately, as you well know, this is such an unpredictable disease. It might be that you have to refine the SCD again or that the Crohn's needs to be hit a bit harder with medication for a while. You know that our thoughts are with you and E. :hug:

 

[greypup]

I've updated my stats post

I'm sorry that things are changing for E. M couldn't tolerate the SCD diet that I began with and it was hard to make peace, in her case, for surgery and then to begin mesalamine. It's still not under total control. Her check up is in another couple of days. There will prob be an increased dosing or another med added.

Hang in there as you are a great resource of inspiration and hope.

 

[Mattie]

Hi Charleigh

I've been following Es progress with interest but am struggling to find the update you published today? I know it's probably me not being able to find my way round the site yet, but could you either send a link or point me in the right direction please?

Mattie

 

[Mattie]

Hi again

Forget the last! Ive now found your latest post. My fault for not being able to find my way around the site. So sorry to hear about Es latest results. Try not to worry, this disease is notorious for its ups and downs. I use diet to control my Crohns and I, too, am struggling at the minute. Clearly I am eating something I'm sensitive to, so it's a process of elimination again, which can take a while. I'm suspecting too much fibre as I am heavily reliant on nut milks and flours as I can't tolerate cows milk or soya. Time will tell.

 

[Amy2]

We're still doing the SCD, but my son is not gaining weight. We've just added lentils, to be followed by other beans and that will be a calorie boost. If he doesn't start gaining now, we will have to do something else, obviously. The SCD is unfortunately not the amazing "cure" for my son that it was for my daughter.

 

[Beach]

Sorry to read about the recent set back E is experiencing with weight loss and latest test results! As you mentioned E added potatoes to his diet a few months ago & possible this has led to problems.

You might have run across this mention before, but if not, eating potatoes has been a curiosity for some that write about diets. For example, from Dr. Guyenet's sight ~

"The Potato Diet"

http://wholehealthsource.blogspot.com/2012/12/the-potato-diet.html

snippet:

...Potatoes appear not to cause fat gain, and in fact frequently cause fat loss and improve metabolic health in people who are overweight. The Washington Potato Commissioner Chris Voigt illustrated this in his two month potato-only diet, during which he lost 20 lbs and greatly improved his metabolic and cardiovascular biomarkers without feeling hungry. I interviewed Mr. Voigt and gave my thoughts in a series of posts (4, 5). Some people objected that Mr. Voigt may not have been impartial since he had an interest in making potatoes look good. Although my gut feeling was always that he was being straightforward about his experience, it's nevertheless a reasonable concern.

This year, a fascinating thread appeared in the Mark's Daily Apple forum. Apparently inspired by an exchange with Ray Cronise, someone decided to go on a potato diet and began losing weight rapidly (6). The thread snowballed as other people joined in and found that they were also losing weight rapidly on the potato diet (potatoes, sometimes with a small amount of added fat). It is worth noting that most of these people were coming from a primal-style low-carbohydrate diet*. As of right now, the thread has 104 pages.

People have proposed explanations for this phenomenon, and some have been amusing, such as the attempt to explain the effect via the insulin-obesity hypothesis....

 

[helena101]

Amy, I just wonder if the vegetarian version of SCD that you are following is playing a role in the lack of success? Natasha Campbell McBride (who wrote the GAPS book) says that a vegetarian diet is not healthy, and that the gut especially needs meats and meat-fats to help heal and seal the gut-lining, and that is why she advocates starting with bone broths... I don't know if the attempt to get enough calories without meat has ended up in a diet too rich in sugars: too much fruit, too much honey... Maybe even more nuts than he can tolerate just yet? The GAPS diet says that 85% of food should be savory, and sweets foods should be used sparingly as snacks... Just a thought, and I may be completely off, as I don't really know what the makeup of your son's diet is... I also don't know if its something he would be prepared to try...

 

[Amy2]

My son may be one of the few people on earth who NEED to eat meat. If that's the case, I hope he will. I've cooked him some, but he pretty much just picks at it.

He lives on organic fruit smoothies, green smoothies, pureed vegetable soups, scd cheese bread, cheese and yogurt. He ate an artichoke the other night and loved it, so he's expanding s-l-o-w-l-y.

 

[Charleigh]

I am beginning to think that the "need" for meat varies from person to person. I think we need to remember that we are individuals. What works for one may not for another. How is your son doing, Amy2?

 

[Susan2]

I have a very good friend who is a vegetarian - well, a piscatarian (a vegetarian who also eats fish). We sometimes go on holidays together and I try to cook and eat things that she can eat, too. Always, however, at some stage - usually after about a week - she says something like: "I think it's about time that you had a steak". I don't notice that my behaviour/mood has changed, but she does.

 

[Charleigh]

updated stats in post #2

 

[helena101]

That looks great!

 

[Amy2]

We're hanging in there with the SCD.

I can't believe that my son has gone more than 8 months without chocolate. He's a bit sad about Halloween...

He was 79 lbs in March and weighed in at 115 yesterday. The only drug he takes is Pentasa. I'm beginning to be a true believer in the SCD.

 

[Charleigh]

Update to post number 2

So happy

 

[helena101]

Wow!!!!! That is absolutely amazing!!!! It really sounds like the diet plus supplement are working wonders! I'm so happy for you! What's the supplement?

 

[helena101]

Charleigh, would you mind describing a sample day's menu for E on the paleo AIP?

 

[Mattie]

Well done Charleigh and E. I'm delighted for you and you deserve huge congrats for perseverance.

Treating Crohns through diet needs the commitment you have demonstrated, but the results speak volumes!

 

[Charleigh]

Charleigh, would you mind describing a sample day's menu for E on the paleo AIP?

He has a smoothie every morning for breakfast. This has a banana, sunbutter, ice, coconut milk, a touch of honey, and the supplement I talked about.

Lunch: usually left over meat with some fresh fruit and veggies

For example: leftover grilled chicken, green beans, and grapes

Dinner: Meat, vegetable, salad, fruit

For example: salmon, salad, sweet potato

He doesn't snack much. When he does he eats roasted sunflower seeds or fruit.

It is a difficult diet for a 12 year old boy, but he has adjusted. We think we need more food and more variety than we need. I spent a summer in Papua New Guinea. They ate rice with a little canned fish and cooked greens on top every meal. The only exception was a holiday.

 

[Charleigh]

Wow!!!!! That is absolutely amazing!!!! It really sounds like the diet plus supplement are working wonders! I'm so happy for you! What's the supplement?

I get it from a local pharmacist. He is very holistic even though he is a pharmacist. He orders it through a company but it has his name on the label and I have no idea where he orders it. I will check and see if I can find it though.

 

[helena101]

I agree that we don't need much variety at all in our diet. How long do you plan to stay on strict AIP? Will you try to slowly introduce anything new after 6 months or so? I'm sure you don't want to rush though, as you seem to have found a formula that really works for E. The results are really dramatic, especially considering that just some months ago E was struggling. Very inspiring!

 

[Charleigh]

I agree that we don't need much variety at all in our diet. How long do you plan to stay on strict AIP? Will you try to slowly introduce anything new after 6 months or so? I'm sure you don't want to rush though, as you seem to have found a formula that really works for E. The results are really dramatic, especially considering that just some months ago E was struggling. Very inspiring!

I am not sure about the length of time? At least a year or two, don't you think? It is more difficult to stick with something you aren't sure is helping than when you see results. I really don't ever imagine him eating dairy and gluten. Maybe there will come a day when he can occasionally have rice or corn? No idea!

 

[Mattie]

I think you are right to be cautious. Professor Hunter's experience is that it takes 6-10 years for crohns to burn itself out when treated via diet.

I'm just starting year five of treating mine with diet, and although I can see many improvements, don't want to rock the boat by altering my diet just yet.

 

[helena101]

I agree about dairy and gluten probably being out of his life for a decade at the very least, if not for ever.... But maybe eggs or nuts (are nuts allowed on AIP?) could be tried after a year or so... And just one new food for a good 3-6 months... It seemed that potatoes had an affect before that was very SLOW in onset, so I certainly wouldn't risk it by trying lots of new things close together... Anyhow, you will see. It is so great that you have found a diet of safe foods for him to remain well, that's really the only important thing.

 

[Charleigh]

I agree about dairy and gluten probably being out of his life for a decade at the very least, if not for ever.... But maybe eggs or nuts (are nuts allowed on AIP?) could be tried after a year or so... And just one new food for a good 3-6 months... It seemed that potatoes had an affect before that was very SLOW in onset, so I certainly wouldn't risk it by trying lots of new things close together... Anyhow, you will see. It is so great that you have found a diet of safe foods for him to remain well, that's really the only important thing.

No eggs or nuts on AIP. I was thinking that after a year it might be safe to try those one at a time (with months in between). They are technically paleo so I wasn't thinking of them as "out forever". We'll see

 

[Charleigh]

Wow!!!!! That is absolutely amazing!!!! It really sounds like the diet plus supplement are working wonders! I'm so happy for you! What's the supplement?

I cannot find this supplement anywhere online. They formulate and sell to natural practitioners. I have a feeling they don't allow it to be sold online? Your best bet would be to call around to naturopaths and see if they have it. It is expensive. If it wasn't working, there is no way I would spend the money. Two cannisters last 28 days and it costs $60 a cannister :ywow: There is a similar supplement online called InflamX but the ingredients are quite different.

 

[Amy2]

My son eats a lof of what are other's trouble foods. Dairy, peanut butter, raw fruits and veggies (blended in smoothies). He never feels great or terrible and we can't find any link between specific foods and his occasional trouble in the bathroom (most days his bm is perfect, but about once a week, it consists primarily of undigested food and he feels bad for hours after going).

 

[Mattie]

Charleigh does this supplement have a name?

 

[Charleigh]

Yes, but the label is a local pharmacy and I can't find it anywhere online. It is called Inflamma-ease, but not the tablets you find online by a different company. It is a powder that you blend into a shake.

 

[hugh]

I am not sure about the length of time? At least a year or two, don't you think? It is more difficult to stick with something you aren't sure is helping than when you see results. I really don't ever imagine him eating dairy and gluten. Maybe there will come a day when he can occasionally have rice or corn? No idea!

Just a quick note Charliegh,
If you E switched to AI paleo and noticed a huge improvement then there are a couple of questions to ask,
-did anything else change that may have had benefits - meds, supplements,?
-how many changes were made in the diet?

It is quite possible that all the improvements are due to just one food being left out of the diet, and it is also possible that it is due to not eating a combination of foods.
Most of the people recommending the AI paleo protocol recommend avoiding these foods for 30-60 days, then reintroducing them one at a time to see if there is a reaction, so some foods are reintroduced and kept, and some are reintroduced and re-eliminated (maybe these ones are left out for a year or so)
Obviously the one at a time testing is so important.

I'm surprised you put rice and corn in the same question,
White rice is generally safe and corn is generally not.
I wouldn't randomly try foods, i would research and reintroduce foods one at a time based on their toxin levels and nutritional benefits, not taste or cravings.

Best wishes