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Paleo Diet Success?

Hello,

It's been awhile since I last posted but I wanted to share some *success* with Paleo. Our son John, 9 years old, has had Crohn's since 6. He's had his ups and downs, with some success last year while gluten free in combination with MTX, low dose steroids, and Azathioprin.

He got scoped again in January '13 after he ditched the 'roids and his calprotecin went up. He was at 300 in July '12, up to 1200 by Xmas '12. He had dropped the GF thing in July after 6 months of being on it, and dropping his calprotectin from 3000 (yes you read that right) in November '11. Although his doctor, German--b/c we are Americans in Germany--thought we were crazy to change his diet, we felt that GF had a connection. That's regardless of all the tests that ran counter and said John had no sensitivities.

So after John's January '13 scopes we decided to put him back on GF come February. He weighed about 74lbs. He was drinking shakes for nutrition to ease his belly, you know, a common thing for Crohnies. His doctor wanted him on Remicade or a "pulse" of very high dose 'roids (a three day mega dose). We waited and didn't do either.

Then John got sick---VERY sick.

He started getting unexplained fevers once a day as high as 103. All he could eat was ice cream at one point. He had colds all the time. Then he had horrific smelling diarrhea for 6 weeks. He missed a ton of school. I suspected lactose, the doctor felt it might have been gallstones or maybe something else. After THREE MONTHS of screwing around, with the last 6 weeks being a nightmare and almost causing us to admit him, I noticed something at his little brother's 5th B-day party: John wanted BURGERS (sans buns of course). This from a kid who had severe diarrhea for two months and wanted nothing but Chex with no milk and ice cream every once in awhile.

SO, I said the heck with it and told John he could eat whatever he wanted, and John wanted plain burgers. Breakfast, lunch, and dinner--with a Sprite in the AM--that's all John ate for a week. No Sprite any more btw :*) To say it was a total 360 degree turnaround is an understatement. As a test, we did lactose-free products and guess what? Explosive diarrhea. Was it Casein? Whey? Who knows?!

Thus since about a month now, all John has had to eat is strict Paleo. He indeed cheats on one thing: Ketchup, which has real sugar, but it's organic and has few ingredients, maybe two TBs at most/day. Other than that, all John eats is meat, fruits, veggies, and nuts. He weighed 69lbs a month ago, now he's at 77lbs. I haven't seen the kid look this pigmented in three years and his body aches, mouth sores, diarrhea, gas, smelly stools/gas, are GONE. His appetite is CRAZY as he eats NON-STOP!! He's always hungry now. His belly pain? His classic ileum pain? All gone.

Of course John is still on his nightly immune-suppressant and MTX on the weekends. Other than these drugs, he's on nothing else. NO steroids. The last time he ate like this he was on high dose 'roids for a week or two.

I don't know. I was tired of my doctor telling me I was crazy altering his diet, so we've been doing Paleo on our own, and by golly it's doing something. I don't know if his calprotectin will drop, but the kid has gained 2lbs a week in 4 weeks. He's finally HAPPY and he hasn't been like this since he was diagnosed three years ago.

Of course, after doing this for a month, my bit of advice for those interested in a go at it is to be STRICT. Follow the rules of the diet. Give it time. I read posts from people who try Paleo and cheat-cheat-cheat!! They are also impatient. Who knows, maybe John's success will only last a month? But the gains he's had have been invaluable, I will say this.

And even if his calprotectin, C-reactive, ESR, all stay high--I'll probably keep him on this diet by virtue of the way it makes him feel, which is AWESOME as described by him...
 
Wonderful to read! Thanks for sharing your son's diet success. Hopfully he will continue to see improvements going forward.

What you and your son have done reminds me I should get around to updating my dietary thread on what I've done. Maybe in a few weeks I'll get around to it.

I've been following the paleo diet more or less for years, have felt better for it, but didn't find it a complete solution for me. At the beginning of the year though I stumbled upon being well to the gut nearly ever day. So I locked in my diet, began eating the same foods over and over, and after continued success began writing a food journal. I wanted to work on improving my situation even further.

I have to be careful in mentioning this as I believe each case is different, we are all individualistic in our health needs, but what I've found it appears is that I can make myself well two ways: with eating a probiotic rich diet with some aged milk based items, and with avoiding all cow products. I feel much much better on the cow/ beef/ dairy avoidance part of the diet - but as is often said, time will tell. As a result of the locked in diet, I'm also avoiding a few other foods so eventually need to see how that works out with the finicky gut.

Best with the continued success! Hope it progresses further.
 
**UPDATE**

SO we went to the doctor yesterday, November 11, 2013.

It was somewhat unusual, not just because we're Americans seeing a German doctor in Germany, but because for the first time in 3 1/2 years we hadn't gotten a summary of the previous visit. The previous visit was August 2, 2013.

John, who is now 10 years old and in the 4th grade, has been a moderate to severe case of Crohn's since age 6. Yesterday, he was shown to have increased height since the last visit 3 months ago, and had maintained his weight (a healthy 87lbs).

BTW, John has been a VERY strict Paleo since August (100%), and about 95% Paleo from the end of May to August 2013...

Anyway, John's Calprotectin scores have been hovering around 2500 to 3000 while on an unrestricted diet. With gluten taken out, it tends to be halved, of course, supplemented by MTX and Azathioprine (and sometimes steroids).

His May 2013 Calprotectin level was 1250--unchanged since November 2012.

As for August 2013, only THREE months while on Dad's initiated, doctor poo-poo'd, Paleo...

48

Yes, you read it right: FORTY-EIGHT

All other indicators of inflammation??

NORMAL

Iron levels?

INCREASED, NEAR NORMAL

This must have been why we didn't get our summary in the mail for the August visit. I didn't call or email them, a hospital 45mins away, because I didn't want to jinx it! So we've waited 3 months for this Calprotectin score.

Now we have another sample in as of yesterday. I doubt I'll wait 3 months like I did the last time. Nevertheless, John's appetite, color, demeanor, everything--is still unchanged. He acts and feels the same as he did in August, so I'd actually be shocked if his Calprotectin increases.

I am praying that John is in remission and that by sticking to this diet we can keep him going and get him off this drugs!!!!!

Another reason I know he's doing great? He sticks to the diet. He knows it's making him feel better!
 
So glad to hear his FC number is 48, that is great news, long may it continue!!

They have him on both AZA and MTX? Wow I've never heard of that combo. Is he still on that combo? How often does he have to do steroids as well?
 
He hasn't been on steriods for exactly one year. He's been on MTX for exactly two years and Azathioprine since day 1, a little more than 3 years ago.

It's currently 10mg MTX once a week and 100mg Azathioprine a day.

Our doctor wanted him on Remicade last May, but I was very worried about the AZA. I couldn't get a straight answer about how long AZA takes to clear the system, and when we'd cut it out before the Remicade; stuff like that.

We prepped for the Remicade (scans, bloodwork, TB test, etc.) but I lobbied for a steriod "pulse" which would have taken 3 days, and THEN the Remicade maybe a month later. This WAS the plan as of May '13. I figured the pulse might "take" and maybe buy us some time.

But between the "pulse" and the Remicade, I was looking at a week with John in a German hospital, or more, over his summer break no less, and a pile of $$$. Combined with the slight cancer risk, sequester (yes, my wife is a civilian worker) I was very worried.

I had my theories about casein, among other things, so I said the heck with the doctor and went for Paleo. SO no pulse and no Remicade.

Unlike SCD, a true Paleo, which is remarkably strict, would have eliminated so much--virtually starting from scratch. This caught my interest.

Also, when we experimented in the past, John's Calprotectin level had noticeably dropped when gluten-free. Then we had a birthday party (May '13) and I made a heck of a bunch of plain hamburgers, which provided me with tons of leftovers. That week, all John ate was burger--his appetite was crazy. I told him to eat whatever he wanted that week, and he basically chose leftover burgers, fruits, and veggies--nothing else.

Then I had bought him a lactose-free candy bar, he ate the whole thing, and was totally sick for two days...maybe it was the casein, who knows?

Also, I have several "Crohn's Cookbooks" and I am at times surprised at some of the things suggested. Gluten is irritating, I'm convinced, and since this intolerance is all over my wife's side of the family, I've always figured John had to inherit some of this--regardless of the testing. As far as the milk, that's also on my wife's side. I had an issue as a baby, but haven't had problems as an adult. From what I've read, milk isn't very easy on the body either. So why not take these things out, completely? Worth a shot, especially since a Chronie's belly is usually so very stressed anyway. Why add to it?

Nevertheless, what do the doctors suggest when my son isn't eating? Shakes, smoothies, etc. It's either BRAT or junk, really. More milk! I've noticed somewhat of an endless cycle with the milk. Again, why add to an already stressed gut. The Paleo folks talk about homemade bone-broths and the like, the GI doc talks about crackers and Ensure...

I doubt it'll work for everybody, I don't even know how long it'll last for John, but I'm convinced it's doing something. For now, we go with it. It's a VERY hard diet, Paleo is full of crazy rules, and you just can't eat meat all day, and fruits all day either. One can really go psycho over engineering a true Paleo diet. Factor in a kid who was 9 when he started Paleo, and you can begin to imagine how hard this all can be. I also stay home full time, and have been for 7 years. So I've put the time into this for John. Others aren't as fortunate to have someone else watching over them so closely.

In all, although he's restricted, if you were to ask him--John would tell you Paleo is easy and he's happy--because he can eat all day long! THAT's how hungry he's been for 6 months, and that's something I see as a clear indicator as things improving. Here's what he ate TODAY, remember he JUST turned 10, so this is a typical food "groove" for him:

Breakfast:

-20 egg/banana pancakes (equal to 1.5 bananas and about 3 eggs)
-1/8 slice of Paleo chocolate cake (actually quite the health food--not your everyday cake)
-Water

Snack #1:

-1/2 cup raisins
-1/2 cup cashews (he eats A LOT of nuts--sorry--peanuts not allowed!)
-1/2 cup carrots

Lunch:

-2 fortified 100% juice boxes
-1/8 slice Paleo cake (this is his new vice--basically eggs and coconut flour)
-7 one inch sized meatballs fortified with plain spinach and tomato paste
-2 applesauce cups, 100% natural
-4 coconut macaroons (basically unsweetened coconut and 100% coconut milk)
-1 apple (this kid LOVES apples)

Snack #2:

-1/2 cup cashews
-1/2 cup carrots
-1 fresh OJ w/calcium ice pop (his siblings love these--yes they are GOOD!)

Snack #3:

-1 banana
-1 apple
-water

Dinner

-1 serving of plain chicken with 100% natural tomato sauce
-1 cup plain broccoli
-1 apple
-4 coconut macaroons
-1/8 slice Paleo cake
-1/2 cup carrots
-1 clementine
-water

Snack #4:

-1 banana
-1/2 cup cashews

Bed:

100mg Azathioprine
Calcium/Vitamin D supplement

Yes, he does eat other things, cauliflower wraps and such, but he loves eating all of this stuff and it's great to watch. At his age I was drinking maybe one or two Cokes/day, Oreos, etc. I think it's pretty good for a 10 year old and definitely not a struggle. Note the amount of fiber as well. Doesn't bother him at all.
 
I had never heard of a combo of immunosuppressants, that is so interesting. Good luck with the diet!
 
Quite frankly I don't think the AZA does squat for the Crohn's per se. The Euros seem to use it in severe cases where fistulization has occurred, which is what happened with John when he was 6. I'm told 100mg is a double-dose by Euro standards. I have to order the pills in 50mg tabs since no one stocks them at 50!!

The fistula was pretty bad btw. The treatment was brutal based on the location and our pediatrician had a number of heated phone calls with the GI Dr. over the treatment. Lots of fun listening to people yell at each other in German, which they did. The abscess they cut out made a hole big enough for me to insert my entire thumb up to just past my finger nail! The technique used left the hole exposed until it sealed on it's own--it took SIX MONTHS. This infuriated my pediatrician. I just went along for the ride at the time. The GI claimed that based on the amount of drainage, which was excessive, the hole needed to be left open, supplemented by drugs to reduce the chance for inflammation and infection.

Then again, at last scope in January '13, the doctor said his colon was 90% to 95% clean as compared to when he was 6, when he was suffering perianal disease--when it was considered severe. I reviewed the entire upper and lower GI session on video with the Dr., most of the problem is indeed in the ileum area, with some progression downstream--but vastly improved since John was first diagnosed. We haven't had an issue with the fistula since 6 months after it was operated on, over 3 years ago.

Thus, I'm not entirely sure why John's still on the AZA. We talked about pulling him off a year ago but it didn't happen.

Anyway, I think the doctor is worried that the fistula might return if he pulls him off AZA.

As for MTX, the 10mg/week MTX brought his calprotectin down, slowly, when we first started it in '11. Then again, it was combined with steriods at the time. After the 'riods came out, his score went up, then we went gluten free and it came down again. But the GF wasn't sanctioned by the Dr. and neither is the Paleo. Essentially, our GI Dr. has been trying to talk us into Remicade for the past year or so, then it was steroids again, but we've had all sorts of growth issues on steriods so I've frowned on it.

Quite frankly, the Paleo in combo with the AZA and MTX has been the only thing to get us significant results. Period. A Calprotectin score of 48 is just silly when you're talking about 1250 just 8 weeks prior to that--from a kid who hovered between 2500 and 3000 for over two years, then sat at 1500 for the next year... So he basically went from a very inflamed severe case that required hospitalization to well, normal. All in 8 weeks.

Of course, some might think the August Calprotetin lab was messed up. Yet, John gained 15lbs in 8 weeks and has maintained weight rather easily since his initial gain from June to August. He eats non-stop. I bet he eats 20 apples a week, 5 bags of carrots too, at least, for example. I buy cashews in bulk now. He ate an entire 3lb container of cashews in one week this summer. Before Paleo, I'd laugh at something like this. Silly. Three heads of broccoli a week, maybe two of cauliflower? I just bought him a 5lb rump roast today, maybe he'll make it last into next week, probably not.

He's on a 504 plan at school and is allowed to eat all day long. He literally jumps out of bed in the morning at 0630 and participates in recess and sports--running the mile at school twice this year--things he never did until he started Paleo. He would always throw up in the morning, not get out of bed, complain about his belly after running, throw up on the bus, throw up on car rides, soil his pants at school--he does none of this now. He hasn't complained about eating, unless he's hungry of course, since May. Our biggest issue now is simply keeping him fed. He ate 4 dozen eggs last week, does that sound like a Crohn's sufferer to you? It's insane.
 
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UPDATE!!!!!!

As of today, November 25, John's calprotectin is under 20!

Three years of fighting this disease strictly with meds, then 6 months of Paleo, with no changes in meds, and this is the result.
 
Great going! You've inspired me to try paleo. I'm only on day 3, but my tummy loves it. I am not in a flare right now and am coming off bad reactions to meds. I haven't been treated with meds for over 30 years. My original diagnosis was UC, I had the surgery, so was 'cured'. Now at age 63, the docs say I have Crohn's. They tried me on meds to keep me stable, but I had severe reactions to both Aza and 6mp. I'm trying to keep myself stable with diet alone, now. My GI is also a nutrition expert, but when I asked about gluten and gut sensitivities, he dismissed it and gave me a prescription for Aza. I can't get in to see him until Feb, so by then I should know if the diet is working for me or not.

Thanks serrickson, for sharing your family's story.
 
MicheleM, I hope it works out!!

It's a tough diet to follow, especially for a 9 year old in our case, but to have a kid follow it for so long now, without cheating, only proves how much better he feels. I didn't need a test to tell me how it's improved his life. We've been doing this Crohn's thing long enough in our house to see what works by now.

Might I add that everything is multiplied by 1000 when you're dealing with a pediatric Crohnie as well. It's working, for now, that's all I can say.

In our son's case, it appears that gluten (and/or its derivatives) as well as milk (and/or its derivatives) are public enemy #1.

We have autoimmune all over my wife's side, she has Hashimoto's, so she has been GFree for about 3 months now--with mixed results. My gut feeling, no pun intended, is that she could be cross-reacting with dairy, yeast, corn; take your pick. I think this cross-reaction is what is happening to our son, that is, his immune system mistakes milk fat etc. for gluten--YET he's only tested with the traditional narrow-minded gluten tests.

It explains why we had such a fast response to Paleo: he's been on 100mg Azathioprine/day and 10mg MTX/week for 2 years now. Pull out the things that make his immune system go whack, get a little help from those suppressant drugs, and there you go. A remarkably fast HUGE drop in calprotectin, after months of lost hope. His doctor is still floored. I don't think he's ever seen anything like this. Then again, most 9 year olds don't go Paleo...

Keep in mind gluten free isn't really gluten free. It's a myth. Take many GF pizzas for example, which have YEAST in them. Really?

He's no doubt gluten intolerant, per his calprotectin reaction to gluten (which dramatically drops when GF), regardless of what the "tests" say. Thus, our son is what we are now calling "intolerant" to these things, which, no matter what anybody claims--are absolutely NOT accurately accounted for by doctors!!!

You know, I had problems with milk as a baby, up to age 5 maybe? Our (smart) pediatrician didn't test me for a milk allergy or lactose (I'm 36yo btw). Instead, he had me drink milk, and had my mom observe. THEN, he explained that I was obviously having problems with the FAT in the milk. Solution? Don't drink whole milk. Skim was becoming all the rage at the time, so I began to drink skim. Problem solved. OBVIOUSLY, my pediatrician saw that I was intolerant to milk fat, not allergic to milk, and not intolerant of milk per se. I was intolerant to full-fat milk. This differential analysis has been lost by modern doctors.

Anyway, my wife cheated on her GF diet yesterday, and our son looked at her and said "I'm not cheating on my diet, that's for sure--because I feel TOO GOOD!!"

I think it took a solid 4 weeks for our son to really become a kid again. His life has truly been horrible for as long as he can remember, really.

Keep in mind he was also gluten free for four months before he started Paleo...ate a normal diet for a few months before that and GF 6 months before that (with success might I add). So he's already been GF for the better part of 18 months anyway. I just took out milk, sugar, and other grains 6 months ago.

My grandfather was a milk-man for 35 years, and a bread-man prior to WWII. So, it's a challenge to think out of the box like this. I think a ton of people are so emotionally tied to food that it's tough to consider alternatives. Quite frankly, Paleo is rather healthy, in stark contrast to what is put out there by the media. My side of the family tend to have cast iron stomachs--we eat everything--no problem!! Our oldest daughter is like this. My Grandfather is now 92 and eats a loaf of white bread a week, sometimes two loaves, and a bottle of ketchup every two weeks!! Needless to say, I feel bad about my diet at times when I look at our son. So, I have made it a challenge, for ME, to eat more fruits and veggies!! Paleo doesn't translate to meat only, keep this in mind. Veggies FIRST. Natural fats are GOOD. Modern milk, in fact, isn't natural when considering fat. My 92 year old grandfather will tell you that. Milk was actually BETTER for you in the raw. Better when the cream rose. And considering the lengths we go through in our society to have clean WATER, boiling and whatnot, ask yourself why isn't more done in regards to milk purification? I live in Europe, good luck finding milk that isn't ultra-hi temp. Euros know milk is bad for you!

You are what you eat. Also, look no further than cross-fit, the hard-core cross-fit folks that is. My neighbor does it and he's in amazing shape!!!! Paleo is the real deal, regardless of one's health status, just be careful of the diet advice you follow. In our case, we are on the strict side--we're the "no potato" Paleo type. The more you research, the more you'll understand what I mean. True Paleo means no potatoes, no alcohol--stuff like that. Other Paleo people will allow potatoes, alcohol--I've even seen sites that promo CHEESE!!! Amazing. Wrong.

Finally, keep in mind that drugs have helped in getting a quick response. For now, it's a happy marriage, but we're hoping we get off the drugs!!!
 
Thanks for the update and info. I'm following a strict paleo diet and am now feeling the withdrawal from starch and sugar. Low energy and a bit of a flat emotional feeling. I'm going to pay more attention to my water and fat intake to help with this.

When I start feeling whiny, I picture your little boy bounding out of bed in the morning with energy for his day, and it helps me persevere. I have 2 grandsons, 8 and 4, and a baby granddaughter. Lots of motivation around me!

My dad passed away this fall at the age of 90. He drank a lot of alcohol since childhood, smoked most of his life, was addicted to sweets, never exercised. Go figure. He did love his bacon and eggs every day.

I've found lots of paleo info on the internet and am collecting and trying recipes. I'd recommend The Paleo Mom, because she has kids, and has kid-friendly ideas.

Off to the grocery store, now, for more protein and veg!

Take care.
 
Thanks for the update and info. I'm following a strict paleo diet and am now feeling the withdrawal from starch and sugar. Low energy and a bit of a flat emotional feeling. I'm going to pay more attention to my water and fat intake to help with this.
It does take a while but once you are over the hump it is pretty easy.

I don't want you to rush out and change what you are doing, especially if it is working for you.....
....this is just intended as food for thought, and may be useful information when you decide to review your diet, or if it isn't working as well as expected.....
Thought on paleo have changed a bit since the early days (mid 80's).
Cordain and the other originators postulated that we ate meat and veggies but it seems more likely that as part of our evolution from forest dwelling 'apes' to grassland dwelling hominids we would have relied on tubers as well (hence the amylase in our saliva ).
One problem found with some paleo dieter is that they can develop hypothyroidism (not common but not unknown) and other issues and these can often be remedied by increasing the 'safe' carbs (low toxicity glucose based carbs like tubers and white rice).
This leads me to believe that IBD and modern (neolithic?) diseases are due to toxicity rather than carbohydrates so i prefer the Perfect health diet [1] model to the SCD/old school paleo model.
It's still 'low-carb' compared to the SAD, but not nearly as low as some people are aiming for.

It's just my opinion and it still comes down to working out what works for you!
TMy dad passed away this fall at the age of 90. He drank a lot of alcohol since childhood, smoked most of his life, was addicted to sweets, never exercised. Go figure. He did love his bacon and eggs every day.
Bacon in moderation, meat from grass fed ruminants (cow,sheep,goat) and oily fish are best.
Eggs ARE a healthy food [2]

I've found lots of paleo info on the internet and am collecting and trying recipes. I'd recommend The Paleo Mom, because she has kids, and has kid-friendly ideas.

Off to the grocery store, now, for more protein and veg!
I love the paleo mom too, and she has intelligent words on carbs
"The takeaway message here is that humans can adapt to a wide range of carbohydrate intake if they are avoiding foods that cause inflammation and irritate the gut and if they are eating a balanced omega-3 to omega-6 fatty acid ratio."[3]

[1] http://perfecthealthdiet.com/2010/07/ulcerative-colitis-a-devastating-gut-disease/
[2] http://perfecthealthdiet.com/2013/11/healthfulness-eggs/
[3] http://www.thepaleomom.com/2012/07/optimizing-carbohydrate-intake-for-your.html
 
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Thanks Hugh. I have hypothyroidism and take meds for it. My GP checks my blood every 3-4 months so I'll stay on top of that. Thanks for the nudge.

I'll check out the perfect health diet, too.

Had a fruit smoothie, egg and bacon this am. Yummy! Have a beef stew with lots of sweet potato in the crock pot for tonight.

Have a great day everyone!
 
This is an interesting discussion, that doesn't happen often enough. My wife has Hypothyroidism too btw. Very interesting once you start connecting the dots! On my dad's side, the men eat like crazy, anything, with very little issue, so I tend to look at my wife's ancestry: diverticulitis, dermatitis, Celiac, hypothyroidism, etc. It seems gluten comes up A LOT, but MILK is the ignored irritant in the family. Of course, I had trouble with milk as a baby, allegedly, although nothing for most of my life...so gluten on Mom's side and milk on Dad's causing problems? Plausible.

The key is to get the idea of a "cure" out of the brain. The focus here for us is for our boy to feel better, grow, and for us to remove all irritants. I'm not trying to cure him. I think once you got this Crohn's thing, you got it for good!

If milk and gluten are irritating, why wouldn't removing them do at least some good? This isn't to say that we know 100% that milk and gluten are irritants in John based on tests etc. It's just that gluten and milk tend to come up a lot as GI irritants in general. Gluten gets all the press, but milk, wow! Indeed, it's an untold story for sure.

Milk is the common thread between industrialized nations, countries with growing GI issues. Milk is also known to cause MUCUS, which leads to complications such as ear infections, which leads to antibiotics. Our son had this scenario as a baby, as well as recurring Strep until 6. Milk and Strep tend to go hand in hand too. Then you have the whole MAP thing. Frustrating! My grandfather was a milkman!

Anyway, we had our son GF on and off in 6 months spurts and found success, but that stinking milk cleared it all up. What happened was that John lost a lot of weight, and all we could get him to eat was ice cream (and other milk products). Basically, we had him on a milk challenge (didn't realize it), and it made him really sick. He lost 10lbs; which when considering that gluten free helped, and milk was bugging him, why not go Paleo?

At this stage we're cutting any losses. It's worth it in our case. If this makes him feel better for 6 months then it's a win, as our son was considered a moderate to severe Crohn's case. If we get him through his teen years without surgery because of this, it'll be unreal.

A year ago, pre-Paleo, our specialist told us that surgery was inevitable within a few years. Now, he's very optimistic and opted to hold off on his routine bloodwork until February, which tells me that the doctor is confident. During our last visit he was shocked and could not stop talking about how good John looked.

I think once a person finds what works for them, the results are in your face. With our son, for example, once we took out milk and the gluten--the hunger came back and it was like he hadn't eaten in months. You can't imagine how much he ate the first 6 weeks. He had been starving.

The key is putting together a good diet. I say it over and over: Paleo is not a "meat diet" and when done correctly, it is very healthy. You have to be a student of it, and in fact, it's quite fun! Eliminating those sugars is something we all need to do for our health anyway!! It's a challenge and that's what makes it fun.

A ton of sites exist on Paleo. I've checked out Paleo Mom. Sebastien Noel's website is one of the best in my opinion, probably my go-to website at this point. He does a great job at explaining things and providing just enough science to back it. Then there are the FODMAPS folks, it's worth looking this up too.
 
Hi serrickson, Just an update on my paleo experiment. I'm almost one month into it and feeling really good. My GI doc phoned me 2 weeks ago and said he wanted to do a scope to see how much inflammation I have, and talked about other meds I could try, since I can't tolerate Aza and 6mp. Had the scope 2 days ago, and.....very SMALL amount of inflammation. He recommends no meds at this time. I think he was a bit surprised, as he was expecting a 'fair bit of inflammation'. (I had a major blockage mid Oct.) Paleo? Who knows? But I'm sticking with it.

I hope your son is still doing well, and that your family has a very happy and healthy Christmas.
 
Hi MicheleM! Wow, a small amount of inflammation is great news! Getting off the meds is such an awesome thing. This is where we're trying to get to.

Our son is still doing really well--growing in height--and his weight has stabilized (don't want him too big). We don't run another Calprotectin test until February, so we'll know numbers then. I guess I could run a sample over for giggles, but I know by now when things aren't good. And things are great! Why bother?

Quick question: what were your issues with medications? I'm interested because it's difficult getting straight answers from a 10yo! His medications could be making life miserable but we'd never know...typical 10yo boy I suppose...

Keep up on the Paleo. The more I read about it, about milk/gluten/sugar, the more I feel bad about my own diet. Interestingly, I've found a lot of great information on Vegan websites too, even though there are obvious differences between the two lifestyles, they do share some common ground.

I just can't get over the difference that Paleo has made for us. I attached an image of a table I created a few weeks ago that depicts the stool protein changes as compared to dietary changes--so you can see the trends we've dealt with.

I hope you have best of luck giving this thing a shot. Anything is worth a try! Thanks for keeping me updated!! FEEL GREAT!

EDIT--I do want to point out the obvious contribution of MTX during the initial drop in Calprotectin. I'm not putting it all on GF. Maybe it was MTX [only] that drove down the Calprotectin? Of course, once off GF in July '12, the test score more than tripled by November. To me, this suggested that GF played a role as an irritant ('roids were used until Nov). Then once the milk came out the following May '13, the score dropped completely, as you can see--without the use of steroids too--which we thought was a useful medication.
 

Attachments

Wow, that's quite a story told by your chart. Thank you for sharing it!

My issues with medication: Started Aza, after 3 days began experiencing nausea. It increased in severity over the next week, then I came down with chills, fever and vomiting. I spent an overnight in the emergency room, with anti-nausea medication and Tylenol for the fever. Blood work showed no infection, so the docs agreed with me that I was intolerant to Aza. I went a week without meds to clear my system. I took one 6mp tablet at 10 pm and by 3:30 am., I was vomiting, nauseous, and had chills and fever. The GI nurse said only 5% of patients react like this. I began following the Paleo diet right after my intolerance symptoms cleared up. The GI doctor and I discussed alternate medications and we decided to try Entocort (a steroid), if the scope showed that I was still inflamed. After the scope, I woke up and read the note left by the doctor: small amount of inflammation, no meds at this time, will follow symptoms.

I think many patients experience some nausea from these medications, but the fever reaction is a big stop sign for me. As the medications were working their way out of my body, I also had aching muscles(like a flu virus) and red blotches on my arms and legs.

I've decided to keep away from grains and milk products for another 3 months. Then I might try a bit of cheese to see what happens. Before I do, I'll do some research into this, as I seem to remember coming across some info about specific additives in the cheese-making process that may be intolerant for some people. There may be some types of cheese that are less likely to cause an intolerance. As you say, it's a challenge and that's what makes it fun.

I'm so glad to hear that John is still doing well. You're doing a great job!

And deepest thanks to this forum. I have learned so much about the various medications used to treat Crohn's and have learned from the experiences of others.
I know there is a role for medications and would take them if/when I need them, but I also believe that my diet changes are helping my body heal and become stronger. Crohn's will always be with me. I just have to learn how to manage it.

Anyway, tomorrow is Christmas Eve, and another busy day. Take care!
 
That's quite interesting regarding the fevers/chills. When John was at his most *recent* sickest (last March-May '13) he had unexplained fevers--coming between noon and 3pm. Nausea and vomiting were present as well, at times. Of course, he was on Azathioprine, a 100mg dose, which he had taken at night. He's been on this 100mg since August '10 and still is. This is primarily to help treat and prevent fistula reoccurrence.

During this period of time John only wanted Carnation Instant Breakfast, starting it at around 7am, usually finishing it at school. Then, MAYBE, he'd have a handful of Chex at school by noon, and then the fevers. This is when I was really questioning milk, and thus feeding him whatever he wanted, as the doctor suggested... Maybe the meds made the milk issue more magnified? Who knows?

As for steroids, all they've done for us is stunt his growth and make him eat. Of course, what does a kid want to eat when hungry? Pizza, junk, etc. So judging by my chart, the steroids only contributed to the inflammation, making him hungry as steroids tend to do, but giving us what we thought was carte blanche to feed him whatever we pleased. We thought: he's hungry, this MUST be good, so let's give him smoothies with milk, and pizza, and whatever he wants! Stay away from fiber the doctor said. The more and more I think about it, all of this was a fake hunger, creating the Crohn's cycle a lot of people go through.

Anyway, we've thrown the Crohn's diet books out the window. Today, John had 3 apples, 1 cup raw carrots, a banana, two Paleo cocoa muffins--made with high fiber coconut flour & eggs, almond flour chicken nuggets, 2 cups bagged coleslaw (with homemade dressing), a Larabar, 1/2 cup cashews, 25 almonds, a 100% OJ juice ice pop, 1oz square of 85% Cacao chocolate (it's Xmas! c'mon), two clementines, and quite a large portion of pot roast!

This is a typical day, sometimes he eats more, but never anything less. He eats ALL day, non-stop, and finds food on his own--a critical indication of his health. I force nothing. Also, food for thought, his skin color is awesome and his breathe doesn't smell bad. The breathe was a huge clue, and disappeared a few weeks after he started Paleo. Like, knock your socks off bad breathe. It's these signs that strengthen our resolve. Another big symptom was pain under his right rib, clearly an indicator of ileum inflammation, but ONLY during running. We were none the wiser until last basketball season. After starting Paleo, the pain went away after a few weeks... He weighs 90lbs and is actually big for his height, but can now run the timed mile at school in around 9mins, stopping once! I couldn't do this at 10yo, this is for certain!

Another thing, I keep a dairy and have been doing so for nearly 4 years. I was religious on it the first two, but I still update it. It's a Godsend, about the size of a novel by now I guess, 100k+ words?? When I go back I just start connecting dots.

On the meds, they do have their role. If we're on more mild scripts along with Paleo, forever, I'm cool with that. I wasn't cool with John having uncontrolled very high inflammation, and my doctor clueless as to how to treat it, telling me about the odds of future surgery and getting him "a few good years" on Remicade. This seems standard talk but I'm not buying it, at least not for everybody.

Well, Happy Holidays, it's bedtime here in Germany! Thanks for the updates and keep me posted. I don't have a ton of Paleo recipes, since John likes things plain and raw, but I do have a few lifesavers (and a few tricks i.e. Larabars and BABY FOOD). Yes, in a pinch, I've grabbed baby food pouches! Not the best necessarily, but it works.
 
Haha, burger recipe: basically take lean beef and smash it into a patty then put it on the George Foreman until done!

As time goes on I realize that he was indeed starving--starving for iron, B12, etc. He was particularly deficient in iron. After his last haircut, I noticed that his hair isn't brittle, it's shiny now, and I'm thinking that's the B12 he's now absorbing. So beyond hunger, I think he craved plain beef for what he lacked in nutrition.

His appetite has moved away from meat now, maybe once/day. He's better understanding the nutritional aspect involved here, and so it's easier for me to talk him into new things. He eats mostly raw fruits, veggies, and nuts. He eats all day long, which is great. I can gauge him a lot better because of this habit. It's 5:30pm here--and he's been eating since he got home from school at 3:30! Paleo is cool because of this! If you follow it correctly, you most certainly can eat all day long. And most importantly, you want to!!

He likes food separated, particularly fruits/veggies, and he hates them cooked. So on the one hand it's easy for me, on the other hand, I HAVE to have fresh cut produce in the house. Thus, on Paleo, you really don't need recipes. He's not a recipe kind of kid so it's a happy marriage.

Take my roast recipe for example. I'll get a 4lb tip roast (which is leaner) and set my crock-pot on low, add about 1/2 cup of water, drop in the roast and let it cook for 8+ hours. I like to flip it at 4hrs, but totally optional. It basically falls apart, and that's how John eats it. Personally, I could eat the entire thing. You could make gravy, but he never liked it anyway. In the real world, haha, one would make tacos out of this meat too--which on Paleo you would make cauliflower/egg tortillas (very healthy btw).

He likes plain pork chops with mustard, just 20-25mins in the oven at 400F.

He likes meatballs--take lean beef, add parsley and tomato paste (if you're into that) garlic powder and maybe some dried onion or onion powder. Totally legal. We've put almond flour in these too for vitamin E.

He likes avocado pudding (yes chocolate is legit on Paleo **not on SCD** but it has to be dairy free with very low sugar or 100% pure). Basically I'll puree 2 very ripe avocados, and add 3TB coconut oil, 1/4 cup coconut milk, 3TB pure cocoa powder, 1oz 100% baking chocolate, 2-3TB honey, 1 tsp vanilla. The recipe also calls for pureed dates (6) and 1tsp instant coffee but I simply add more honey to taste. Our 2 year old LOVES this recipe too, I eat it as well, a very easy way to get dark chocolate and avocado into your diet! And up to 50% of your daily fiber in one avocado!!

He likes a Paleo chocolate muffin I make as well. Very portable and something I now eat instead of, well, other junk. It tastes good and is healthy. I make them with coconut oil mostly, but I've begun to use light olive oil exclusively and they stay really moist! I LOVE THEM! He likes them too.

Another thing I do is bread pork chops and chicken with almond flour and tapioca, using egg as a binder. I bake them but of course you can fry them. Baking requires a bit of finesse as almonds don't like to stick to anything!

I make nut balls, similar to Larabars. It's easy: grind up maybe 1/2 cup cashews and/or almonds until it's like almost a flour, then add in dates, I use Dole bagged whole and pitted (b/c no sugar). The dates need to be chopped, but add about 15 and process them in the food processor. Add a little coconut oil and maybe 1/2 cup unsweetened finely chopped coconut ( I live in Germany so this is very easy to find cheaply). Process everything until it crumbles/sticks together. Add more dates to make stickier. Smash into a huge ball as hard as you can, then scoop TB sized balls out with a TBspoon. Mash together tightly and roll into a ball carefully. Roll in unsweetened coconut. Very good. Waaay cheaper than Larabars. The variations are endless.

John also eats, *laugh*, babyfood at times--the squeeze packs made for toddlers. This is a good way to get in nutrition on the go. No spoon? No problem. I eat the squeeze packs too, so who cares?

I make him ice pops out of fortified fresh OJ.

He eats salad almost everyday. I basically take bagged coleslaw and use that. For dressing, I combine Bragg's apple cider vinegar with some honey, garlic powder, and dry mustard. I add in light olive oil (b/c that's what he likes) to taste. Very good--no sugar or other garbage--cheap and easy to make.

My newest thing is bone broth. Look it up, very healthy and good no matter what your ailment. You can make it from a whole boiled chicken! I'll boil a chicken down and use the meat for BBQ. Then I crockpot the carcass (everything) with some apple cider vinegar for 16+ hours, with carrots etc too. Strain it and it makes an interesting broth. Basically how broth is supposed to taste!! In this case, you control the concentration, you could add a ton of bones too. Plus all that gelatin is supposed to be excellent for your gut, not to mention the marrow.

John eats a variety of foods that a typical Crohn's patient is suggested not to eat. Like nuts! No problems. He also eats a ton of fiber. His newest thing is to eat pineapple and sauerkraut! He can't have dairy, so why not sauerkraut to get the good belly bacteria?

When he was sick he wouldn't have even considered this combination. But we are taught to stop the symptoms, not the underlying inflammation. With John, I was always able to slow down his symptoms (diarrhea, nausea, etc) but could never stop the underlying inflammation. Remove the irritating foods, milk and gluten being #1 and #2, and now we're in business! Sure, I was able to stop the diarrhea by giving him crackers and plain grains all day, toast for example, just like grandma and my doctor would suggest, but this was only exacerbating the inflammation. Yet we were content because it was lessening the more acute symptoms. It's a bad way to think.
 
My Burger recipe:
200gms Mince
1 Grated carrot
1 Small Onion -Grated (squeeze liquid off after grating)
1 egg

Mix with fingers
Fry

Works for meatza base too
 
I;ve been doing some reading on the paleo diet & I want to try. I guess I am just a little confused b/c paleo has such an emphasis on nuts, and thats the one thing that my doctor was really specific about staying away from. Is it still possible to follow the paleo diet w/o nuts, or will it be too challenging?
 
I;ve been doing some reading on the paleo diet & I want to try. I guess I am just a little confused b/c paleo has such an emphasis on nuts, and thats the one thing that my doctor was really specific about staying away from. Is it still possible to follow the paleo diet w/o nuts, or will it be too challenging?
Paleo without nuts is fine, just a bit more limited
Some paleo people all for nuts, many as you want, grow on trees don't they?
Others are pretty serious about limiting them. For example Chris Kresser[1]

Depends on how well you tolerate them on a number of levels, from 'what chunky sharp nuts passing through an ulcerated intestine feels like', to how much phytic acid you can tolerate or excrete before it reduces your ability to absorb iron.

There are so many great paleo sites but many overstate the role of cakes and baking
They should be a small part of a healthy persons diet, and maybe an even smaller part of an unhealthy persons diet

Nuts are paleo but excessive nuts are not.
How many is too many?

Diets like Paleo Auto-immune protocol recommend the exclusion of all nuts (and quite a few other things ) and then a staggered reintroduction or 'testing' to see if there is a reaction. SCD recommends total exclusion for the intro stage and a gradual reintroduction starting with smooth almond milk yougurt, moving up to smooth nut butters, then flours and gradually on to well chewed whole nuts.

In my own diet i try to emulate the Perfect Health Diet [2] (paleo with rice?).

[1] Another reason you shouldn’t go nuts on nuts
Chris Kresser
http://chriskresser.com/another-reason-you-shouldnt-go-nuts-on-nuts
[2] The Perfect Health Diet
http://perfecthealthdiet.com/the-diet/
 
Paleo has unfortunately hit "fad status" in the U.S., which hurts those of us who really need it for medical sake.

To address the diet in general, the emphasis is key. The general public thinks "meat and nuts" and then wants to gorge on cakes and cookies and still be Paleo. It's messed up. Even on Paleo, nuts are considered a small component, at the proverbial top of the food pyramid. Are they bad? No, the bad part comes from Dr. fears that the nuts could cause a blockage etc. for those Crohnie's with mechanical problems. There are also fears with anti-nutrients in nuts (which many claim can be mitigated through soaking, like people do for beans) AND there is the very real omega 3:6 ratio, AND the sizable amount of calories in nuts...

My son has no mechanical issues to speak of, and he takes fish oil. He also doesn't eat nuts like he use to, so the issues with blockage, omega 3:6 ratio, and anti-nutrients seem to be marginal for him. Early on he ate cashews by the pound (bad ones too--Planters Salted--which aren't 100% Paleo btw) but he did so because his body was starving for those nutrients. Just like when he ate $30 of burger/week, because his body was starving for fat (energy) and iron. Amazingly, once the doctor ran bloodwork and found his iron to be normal for the first time in 3 years, John cut waaay back on the red meat, on his own. It's like his body didn't need it as much.

The body is an amazing thing. But what's more amazing is that our GPs, folks who have actually attended esteemed medical institutions, more often than not have about as much experience with nutrition as you or I do. Most probably have never taken a nutrition course in med school. Ask your doctor, my doctor wouldn't answer this question :)

As far as our son, he's seeing the doctor next week, February 3rd '14. He's over 90lbs now, up 21lbs I think since last June? From last April '13 to this past November '13 he grew 1.25" which is great. But guess what? Since November, he's grown another 1" maybe 1.25" according to my measurements. So the velocity is waaay up, ballpark same height, he did in 2 months what he previously did in 7. He has not growth spurted like this since before 6yo.

As far as the meatballs/burgers:


Paleo Apple Meatballs (my own recipe)

Ingredients

3lbs – Ground Beef (or a combination)
2 Eggs
2 Shredded Apples
1 Cup – Almond Flour
1/4 Cup – Parsley
1/2 tsp – Black Pepper
1 tsp – Dry Mustard
1 tsp – Garlic Powder

Directions

1. Preheat the oven to 400 degrees F.
2. Mix the wet ingredients, and then add the dry ingredients from a separate bowl.
3. Combine all ingredients well with a large spoon or mix with your hands. Then shape meat into balls using a tablespoon.
4. Place the balls on a baking dish/cookie sheet/whatever and bake for 25 minutes or until golden and cooked through.



The meatballs are a little bland for me, but I have FOUR kids under 10 and they all eat them like crazy. I made SIX pounds tonight. For almond flour balls--they won't BURN or DRY OUT--thanks to the apple. Almond flour meatballs usually taste rather blaaaa, but these aren't bad at all, considering the nutrition. You could sub out the apples for apple sauce too.

Once a week I'll make this same recipe with canned SALMON. For this recipe, I add natural bacon, fried plain pork belly in fact, and boy are they good. But I love salmon no matter how I get it (can or fresh). No need for mayo btw...

Lots of Paleo recipes are horrible, but there are some creative items out there, you just have to look! Stick to those veggies, cooked or raw. We should be eating more veggies anyway! Now THIS is Paleo! Not meat 24/7.
 
Btw, Hugh is right on with the nuts. Basically the message is that a "one-size-fits-all" Paleo doesn't exist. SCD is essentially the Paleo Diet, with a few additions (like the yogurt; some cheeses) and some deletions (CHOCOLATE). Then there is the autoimmune protocol, as was stated, also FODMAPS Paleo (which focuses on minimizing natural sugars). Then you have the whole Paleo potato war that rages, then FATS; it's intriguing stuff.

For us, we take SCD and traditional Paleo and put them side by side. We are basically 100% Paleo, but I reference SCD religiously. They are SO close. The big gap for us is chocolate, which doesn't seem to be a problem for John. So we roll with it. Potatoes are OUT. Other than potatoes and chocolate, we are 100% Paleo. We focus on variety. Or try to!
 
Well, I'm not on 100% Paleo, or 100% SCD, but I haven't consumed any grains since December 29th.

I'm pretty sure I'm feeling good. I'm trying to spread my remicades out to 6 weeks instead of 4. Right now I'm in week 5, and I'm feeling fine. The one ingredient I use that is illegal is butter. I'm sorry, but I can't eat things that don't taste good. If adding some butter to some of my chicken or steak is going to make it not only taste good, but mouth watering, then I have to do it.

I did kind of exploit hot dogs early on too, and noticed I was feeling pretty crappy. I didn't know hot dogs contained starch fillers until I researched into it. Once I stopped I noticed my energy level picking up.

I am also turning into a fantastic cook, especially with meats. I use foodwishes.com. Chef John is great.

Steak, Chicken, Garlic Shrimp, Scallops. I'm still learning, but wow. I never thought I could make those meats taste so good. I guess thats what a little butter sauce and salt will do to things. :)

One day at a time though. I'm not hoping for anything honestly. I KNOW eating this way is going to make me feel better, I'm noticing already.
 
The one ingredient I use that is illegal is butter. I'm sorry, but I can't eat things that don't taste good.
Butter is not paleo but it is 'primal' and it is accepted buy most(?) paleo dieters if it doesn't cause any problems.
I cook meat in lamb fat or coconut oil but i always use butter or ghee for eggs

I did kind of exploit hot dogs early on too, and noticed I was feeling pretty crappy. I didn't know hot dogs contained starch fillers until I researched into it. Once I stopped I noticed my energy level picking up.
Hot dogs are probable as far from paleo as one can get.
No processed, fillered and flavoured reclaimed sludge squirted into shapes is ever gonna be paleo (and i mean meat or grain)
Glad you gave them up

.
I am also turning into a fantastic cook, especially with meats. I use foodwishes.com. Chef John is great.
Steak, Chicken, Garlic Shrimp, Scallops. I'm still learning, but wow. I never thought I could make those meats taste so good. I guess thats what a little butter sauce and salt will do to things. :)
Real food :smile: No going back now.
 
Haha--hot dogs--being in Germany we of course have the best wurst in the world!!! That's from an American.

I let John have brats during the Xmas market season here, this year, and I'd have to say that I didn't think he was 100%. This is especially true since he's been kicking butt with his diet ever since xmas. Basically every weekend for a month he'd have a few sausages, mostly red. They tend to get regional here, so further east we were eating links rather than brats. Dogs can contain all sorts of things, even the red ones here sometimes have milk powder in them...

You do realize the you can make your own butter at home, with real butter of course. One simply cooks it, then skims off the cream. I've never done it. You can also buy ghee. Depending on what you're making, there are a ton of workarounds. Olive oil, especially extra light, works really well for baking pretty much everything. Everybody talks about coconut oil, which is great, but light olive oil works just as well. I mix things up for nutritional variety. I've made non-paleo cookies with olive oil (the quaker oats recipe) and my non-Crohn's kids love them. Just check the smoke point. People say you can't use olive oil for everything, but they're wrong, they use it in everything in Europe--even frying pommes (french fries).

If you like bacon, you can save the grease and sauté with it to add flavor, just like G-ma did. One cool thing with Paleo is that I'm discovering cooking methods from long ago. My mom ALWAYS saved grease from everything and put it in a tin can in the fridge. Then with the whole "fat is bad" movement, people stopped doing that. Now, everybody is realizing that fat is actually good, mom was right! It's like the whole egg battle, nuts. One simply has to educate and keep a food diary.

I actual refuse to buy salad dressing from the store, after experimenting with Paleo versions at home. G-ma made her own dressing, why not me? Mine has honey and no refined sugar. Tastes better too, and no salt. So don't knock goofy ideas until you try it. Nevertheless, butter tastes pretty good so I hear 'ya on that one! I just know that with John milk is a huge no-no, along with grains.

Food is a funny thing, we are very attached to it. To get our family where we are today we had to rethink and reinvent the wheel. Like I've said before, my grandfather was a bread-man in the late 1930s and '40s, and then a milk-man from the late '40s into the mid-1980s. So to exclude milk and grains from John's diet was quite a paradigm shift indeed. But it is working, so why not?
 
Diets like Paleo Auto-immune protocol recommend the exclusion of all nuts (and quite a few other things ) and then a staggered reintroduction or 'testing' to see if there is a reaction. SCD recommends total exclusion for the intro stage and a gradual reintroduction starting with smooth almond milk yougurt, moving up to smooth nut butters, then flours and gradually on to well chewed whole nuts.

In my own diet i try to emulate the Perfect Health Diet [2] (paleo with rice?).

[1] Another reason you shouldn’t go nuts on nuts
Chris Kresser
http://chriskresser.com/another-reason-you-shouldnt-go-nuts-on-nuts
[2] The Perfect Health Diet
http://perfecthealthdiet.com/the-diet/
That website is super helpful! I'm glad that the Paleo diet doesn't HAVE to include so many nuts. I've already stopped drinking regular milk & feel WAY better. I think I'm just gonna go for it and do the perfect diet! I like the idea of easing myself back into nuts after a while and seeing how i do....I'm hoping I can at least be able to have peanut butter or almond butter agian some day :/
 
My roommate just told me today that I was getting color in my face. I AM SO HAPPY THAT SHE SAID THAT!!

Not that I need any motivation to keep going, but WOW, can't believe I actually got an off hand comment like that!!
 
That website is super helpful! I'm glad that the Paleo diet doesn't HAVE to include so many nuts. I've already stopped drinking regular milk & feel WAY better. I think I'm just gonna go for it and do the perfect diet! I like the idea of easing myself back into nuts after a while and seeing how i do....I'm hoping I can at least be able to have peanut butter or almond butter agian some day :/
Yeah, you're right, it's another one of those misconceptions about Paleo (& SCD too btw). It's an "all nut diet" or an "all meat diet" or whatever. A lot of people are looking to Paleo to lose weight, a simple fact.

But for ill folks, you more or less have to eat what you can handle. If you can eat a diet that fixes problems, as is the case with our son John, then have at it.

Our son was big on cashews early on, but quite frankly, now he doesn't eat many whole nuts. It was more or less a "nut and meat diet" for about 2 months--but he felt great!! So we went for it. Now, he's eating nut butter breads that I make for him, with Paleo apple butter. His total nut intake is MUCH lower, as is his meat intake, and if he does eat nuts, like I said, they are processed into butter by me. I do feel better about this.

Btw, my new thing with John's diet is that Omega 3:6 ratio. So obviously, if we're talking Omegas, we're talking NUTS. This topic has been on my mind for some time now as an area with room for improvement.

Anyway, a great way to solve a lot of issues in most diets, if one can tolerate them, is to add more veggies. John's veggie intake is going up, up, up!!! This makes me happy as it starts hitting the essence of Paleo.

I was reading an article the other week about the best/worst "diets" and Paleo was listed as one of the worst. People who aren't sick, just looking to lose weight, do the "diet" incorrectly. Trust me, I've got a now 10yo on it, and I'm constantly tweaking it. Paleo is tough. It's confusing, especially since so many Paleo sites give out inconsistent information. Again, this is why when I'm in a pinch and confused, I always reference SCD. Basically we're SCD, minus the dairy, in other words PALEO.

Cutting out the milk, the dairy, is big. It wreaks havoc on the gut for many folks and it's not just the lactose. One needs to consider the proteins involved, the fats as well, not to mention bad bacteria...
 
My roommate just told me today that I was getting color in my face. I AM SO HAPPY THAT SHE SAID THAT!!

Not that I need any motivation to keep going, but WOW, can't believe I actually got an off hand comment like that!!


Our son started getting these types of comments as well. I really hope it stays this way for you because when John started Paleo, we could SEE and dare I say SMELL his changes. It's motivation to keep going and even be as strict as possible...

Great news, and I hope things keep getting better and BETTER!! Awesome!!
 
It's been a bit of a challenge.... I feel like I can't really eat salads at all, just veggies that have been cooked til they are complete MUSH, or else I get a really bad stomach ache. I feel like I'm on a baby food diet LOL
I am feeling better for the most part, so fingers crossed. I will see if it keeps up for the next few weeks :)
 
It's been a bit of a challenge.... I feel like I can't really eat salads at all, just veggies that have been cooked til they are complete MUSH, or else I get a really bad stomach ache. I feel like I'm on a baby food diet LOL
I am feeling better for the most part, so fingers crossed. I will see if it keeps up for the next few weeks :)
Maybe you want to try some of the foods allowed on the SCD intro diet [1] or the GAPS intro diet [2].
Bone broths should be easy to digest and provide a bit of variety along with some nutrition.
They are both suitable introductions to paleo and if followed will probably ease the transition to a real food diet

[1] http://pecanbread.com/f/how/introdiet.html
http://pecanbread.com/p/how/stages.html
[2] http://www.gapsinfo.com/gaps-introduction-diet/
http://gapsdiet.com/INTRODUCTION_DIET.html
 
It's been a bit of a challenge.... I feel like I can't really eat salads at all, just veggies that have been cooked til they are complete MUSH, or else I get a really bad stomach ache. I feel like I'm on a baby food diet LOL
I am feeling better for the most part, so fingers crossed. I will see if it keeps up for the next few weeks :)
Our John won't touch cooked veggies. He insists on having them raw and separated, same goes for fruit... It's interesting reading how others eat!

Food is an amazing thing. I'm a runner, and although I don't eat a certain way due to health problems (it's my son with Crohn's) I still eat basically a Paleo diet before running--always! I eat fruits and veggies before I run, for breakfast and lunch, because I really notice the difference. When I have bread and/or milk--I lag on the treadmill and feel tired... Keep up on the salads!! They are a great source of vitamins, energy, hydration, etc. The sky is the limit on variety too.
 
Yeah, you're right, it's another one of those misconceptions about Paleo (& SCD too btw). It's an "all nut diet" or an "all meat diet" or whatever. A lot of people are looking to Paleo to lose weight, a simple fact.

But for ill folks, you more or less have to eat what you can handle. If you can eat a diet that fixes problems, as is the case with our son John, then have at it.

Our son was big on cashews early on, but quite frankly, now he doesn't eat many whole nuts. It was more or less a "nut and meat diet" for about 2 months--but he felt great!! So we went for it. Now, he's eating nut butter breads that I make for him, with Paleo apple butter. His total nut intake is MUCH lower, as is his meat intake, and if he does eat nuts, like I said, they are processed into butter by me. I do feel better about this.

Btw, my new thing with John's diet is that Omega 3:6 ratio. So obviously, if we're talking Omegas, we're talking NUTS. This topic has been on my mind for some time now as an area with room for improvement.

Anyway, a great way to solve a lot of issues in most diets, if one can tolerate them, is to add more veggies. John's veggie intake is going up, up, up!!! This makes me happy as it starts hitting the essence of Paleo.

I was reading an article the other week about the best/worst "diets" and Paleo was listed as one of the worst. People who aren't sick, just looking to lose weight, do the "diet" incorrectly. Trust me, I've got a now 10yo on it, and I'm constantly tweaking it. Paleo is tough. It's confusing, especially since so many Paleo sites give out inconsistent information. Again, this is why when I'm in a pinch and confused, I always reference SCD. Basically we're SCD, minus the dairy, in other words PALEO.

Cutting out the milk, the dairy, is big. It wreaks havoc on the gut for many folks and it's not just the lactose. One needs to consider the proteins involved, the fats as well, not to mention bad bacteria...
I'm thinking about starting to make some nut buttered breads.

I'm just afraid I'm going to start eating that type of stuff all the time, and start using that as a substitute for real bread. I have a very addictive personality. I'm not sure if I could eat that type of stuff in moderation.
 
Maybe you want to try some of the foods allowed on the SCD intro diet [1] or the GAPS intro diet [2].
Bone broths should be easy to digest and provide a bit of variety along with some nutrition.
They are both suitable introductions to paleo and if followed will probably ease the transition to a real food diet

[1] http://pecanbread.com/f/how/introdiet.html
http://pecanbread.com/p/how/stages.html
[2] http://www.gapsinfo.com/gaps-introduction-diet/
http://gapsdiet.com/INTRODUCTION_DIET.html
One fool-proof bone broth technique is to boil a whole thawed chicken as demonstrated on this website: http://www.eat-real-food-paleodietitian.com/gut-healing-bone-broth.html

I've used this exact recipe with definite success. It's SO easy and I use the chicken for BBQ, but that's just me. The chicken, boiled, can be a little soft btw. Our daughter LOVES it though for BBQ. She won't eat pork BBQ, but will eat this. Go figure. Two birds with one stone, BBQ one night for the girl, soup the next for the boy.

It can be a challenge to find bone-in beef cuts with lots of marrow nowadays. In Germany, one can find pre-wrapped bones just for broths, in the markets. But they also sell eggs and whole chickens door-to-door here, so...
 
I'm thinking about starting to make some nut buttered breads.

I'm just afraid I'm going to start eating that type of stuff all the time, and start using that as a substitute for real bread. I have a very addictive personality. I'm not sure if I could eat that type of stuff in moderation.
Almond butter is so expensive. I make my own with slivered almonds--no skin and no additives. I can make an 8oz jar for less than $3 and not have to add oil or anything else! Just slivered almonds. Get them in the cheap big bags around the holidays!! I make the butter right in the food processor (just let the thing cool down every so often). You could add honey or whatever else.

Cashew butter is good too, cashews tend to be oily so it's easier on the food processor. Here's the recipe I use for almond or cashew bread:

http://www.elanaspantry.com/rochels-cashew-bread/

I use the same recipe for either cashew butter or almond butter. The almond butter version tastes sort of like whole wheat bread to me, if the almonds have skins processed in the butter. Without skins, i.e. from slivered almonds, it's kind of like a white bread. Not quite, but we're not splitting hairs are we?

These breads tend to be slightly on the dry side, I make homemade apple butter specifically for these breads and everybody loves the nut butter breads with apple butter in our house. My wife, who is picky but not Paleo, toasted some almond butter bread not long ago and loved it with apple butter, so it's worth a try!

Btw, homemade apple butter is stupid easy. Crock-pot it, you could even use plain no additives (no sugar) applesauce for apple butter. The key is to let the steam escape!!! Zero condensation means a nice thick apple butter. I just add cloves, cinnamon, and honey. I use fresh skinless diced apples, anything red in our house. Nobody likes green or yellow apples here :^)

I crock-pot the apple butter on low until it is really thick, mashing it at about 6hrs, then pureeing it in a blender by 8hrs. If it's still thin, I put it all back in the pot and cook some more with the lid off. I you want the recipe in detail, let me know...
 
It's perfect soup weather right now, so I'm sticking to those. Feeling pretty good! I'm gonna play out the cooked veggies/soups things this week, and try some salad out this weekend when I can be at home.

Cashew bread looks super yum! Gonna have to try that. From what I've read, processed cashews should be pretty easy to digest.
 
It's perfect soup weather right now, so I'm sticking to those. Feeling pretty good! I'm gonna play out the cooked veggies/soups things this week, and try some salad out this weekend when I can be at home.

Cashew bread looks super yum! Gonna have to try that. From what I've read, processed cashews should be pretty easy to digest.
The bone broths have a ton of benefits, they are so much better than the store bought stuff. They might taste a little different at first, but you're in total control of that. The cool thing is that you can just add water if the flavor is too strong, spices/veggies if it's too bland. Some people drink a cup, plain, at breakfast.

When talking broths, it makes me think about people who drink straight gelatin, yes gelatin, to heal their gut. More power to them! I don't know how ambitious you are, I know they make gelatin supplements, supposedly gelatin has a coating/healing effect on the gut.

If you're DIY with the broth, adding vinegar is critical as it draws out the goodness in the bones. The longer you let the bones stew, the more you get out. One can't skip or skimp on the vinegar. I use Bragg's apple cider vinegar for everything, including homemade dressings.

The cashew bread recipe I posted is very basic, you can see there is very little honey in it. Obviously, you can make changes. I stick to little honey when I make it b/c our son usually tops it with something, i.e. Paleo apple butter.

Getting these basic recipes down makes everything a lot easier, the problem with most Paleo/SCD blogs is that they have [mostly] extravagant recipes. The sites might be award-winning, but sometimes simple is better!!
 
**UPDATE**

John went to the doctor on February 3, 2014. It's been 3 months since his last checkup and I just got his lab results back today! Continued good news:

Stool Calprotectin <21 mg/l & growth velocity increasing!

So we continue with Paleo!

During these past three months I've introduced honey and chocolate, making cooking soooo much easier for a 10 year old. Now I know I can keep these things in, and make other adjustments & additions. At this point, my biggest issue is keeping his BMI down, as his appetite will make your head spin. This is crazy!

The doctor still wants to continue with his regular drug treatment, 10mg MTX/week, 5mg Folic Acid/day after MTX, & 100mg AZA/day.

Remember, John had a nasty fistula at age 6, so this drug treatment more or less caters to that.

Again, Calprotectin is normal, so if you're interested in trying Paleo/SCD then here's an example of someone having great success!
 
This thread is very informative to me. I'm so glad to hear that your son is doing well and growing. My son is 10 and we're just starting this journey (presently deciding on diet while he takes Entocort) and our biggest concern is his growth. Thank you for sharing.
 
Hi there, Just checking in on your success story. I'm hoping John is still doing well. I am coming up on 4 months of Paleo diet and am still doing well. No meds and no symptoms. I am exercising, babysitting my grandkids, and waiting for the snow to melt so I can get into my garden. Hopefully, my health continues to hold up.
Happy Spring!
 
This thread is very informative to me. I'm so glad to hear that your son is doing well and growing. My son is 10 and we're just starting this journey (presently deciding on diet while he takes Entocort) and our biggest concern is his growth. Thank you for sharing.
Read up on HGH. If growth is a concern, get informed before the Dr. starts talking remission, then HGH shots. Our Dr. wanted John on HGH once remission was induced, but he's backed off since his growth has naturally bounced back.

I have a friend with 3 boys, all of whom cannot produce growth hormones on their own. She explained that once you go the HGH route, there are number of serious problems one might encounter.

If you are serious about diet, keep in mind that it's tough for kids. Really tough. Unlike adults, the social aspect is so hardcore (parties etc.) for one. Our son had a foundation of foods he already liked, for us to work with, that kick-started the Paleo trek we're on. Maybe that list had 8 things on it!! LOL! Anyway, we started over the summer, he was home with me since I stay home full time, and this helped tremendously. I knew what was working and for the first time could monitor him exuding positive changes. So if this is something you want to do, I suggest having a good plan. Keep notes! Ask lots of questions. It takes time, so be patient. And most importantly, you must be a super-shopper and creative chef. This doesn't mean "cook" as in our case, I always need fresh fruits and veggies at the ready. He has his favorites, and unlike the rest of the family, I cannot afford to run out--otherwise he has NOTHING to eat!!! I buy him nuts and apples by the short-ton for crying out loud. I make him these chocolate muffins like it's groundhog day. It can get boring and frustrating, but I've learned how to get creative and fun. I made a menu for us!! It's a big step.

I'll answer any question if you have any. I'm hardcore about immediately sharing with those who have kids, b/c this disease is hardest on them, so if you want to send me a message, I'll definitely get back (at some point at least). I'll try though!

I hope only the BEST for your son!!!
 
Hi there, Just checking in on your success story. I'm hoping John is still doing well. I am coming up on 4 months of Paleo diet and am still doing well. No meds and no symptoms. I am exercising, babysitting my grandkids, and waiting for the snow to melt so I can get into my garden. Hopefully, my health continues to hold up.
Happy Spring!
John is still doing great. Not much has changed except I've tried to level off his weight, which was going north a little too fast!! I know things are still good, very good in fact, because of his hair, breath, sensitivity to cold, not to mention the appetite. His hair is so smooth now, and SHINY!! I just want to reach out and mess it up it feels so soft. His breath doesn't reek, thank God. And it's 25F in the morning here, and he wants to wear a T-shirt and his zip sweatshirt, which is a big, BIG, clue as to his health status. When he's sick--he's COLD! The appetite is always strong. He could eat all day. Still on the same basic meds, nothing too hardcore, I'm REALLY hoping these start to drop by this summer. Next visit to the Dr., in May, I'm going to ask to reduce or eliminate the drugs. That'll give me a whole summer home to see how he reacts!! As always, having a plan of attack!

I'm glad to hear you're doing great too!! I cannot tell you how happy that makes me feel because it's a level of validation when others say this is helping. Hey, maybe in some ways it's not the best diet, but it's a lesser of two evils. John eats a lot of eggs, maybe that's not so good, but having all that inflammation in his gut, was worse!! We're 2 1/2 months until John is officially at 1 year Paleo. Hopefully all of us can keep it going, find new and exciting recipes, and see what happens!

And good God, speaking of recipes, I've been making Paleo chicken nuggets in a fry-pan, and they're too good to be true! So be careful as to what you discover along the way :*)

Enjoy those grandkids, that's motivation enough to keep it going, beyond feeling better!! Awesome!!
 
SCD made such a difference for my daughter, it was like flipping a switch (as I noted in another thread).

We have actually had a very easy transition, because her diet had been much MORE restricted before. She is thrilled to be able to have salad and raw vegetables, for example, which were not permissible according to the "low residue" regimen suggested by the doctor.

Today's big excitement was allowing bacon. My husband identified a SCD legal variety sold at our local ordinary grocery store: Gwaltney hardwood smoked premium bacon. It says "no sugar" on the package in large friendly letters!
 
SCD made such a difference for my daughter, it was like flipping a switch (as I noted in another thread).

We have actually had a very easy transition, because her diet had been much MORE restricted before. She is thrilled to be able to have salad and raw vegetables, for example, which were not permissible according to the "low residue" regimen suggested by the doctor.

Today's big excitement was allowing bacon. My husband identified a SCD legal variety sold at our local ordinary grocery store: Gwaltney hardwood smoked premium bacon. It says "no sugar" on the package in large friendly letters!
AWESOME!! I love seeing this news, it helps us all push on further, and must feel great to share! Thank you for sharing this success, and I REALLY hope it keeps on, keeping on!!

Eventually we might head down the SCD route, as it allows certain things Paleo doesn't, like yogurt, as you well know. Paleo is basically the same thing (of course you know this too!) with a few differences, i.e. absolutely zero milk, but you have the same issues eliminating sugar etc.

I put both diets next to one another, adhering mostly to Paleo, but double-checking with SCD as I go. One discrepancy is definitely chocolate, which is the one thing I allow, 100% pure cocoa is good, 85% Lindt on special occasions. I restrict John's potato intake, so no potatoes, which most in the Paleo community seem to allow. It's hard, so I feel what you've been going through--but I also feel that SAME THING about the switch getting flipped. YES! We had that happen too. But when you commit to this, it's not like a crash "diet" after the holidays, it's a total lifestyle change.

Feeling better only makes the change easier. Once we gave it a little time, going hard 110% Paleo, it was like a switch.

Our son hates cooked fruits and veggies, so our transition hasn't been all that bad, he loves raw stuff so prep is simple. It's also made our other kids eat their fruits and veggies too, a huge positive side-effect. We're almost at a year now come June 1, and we're going to keep on this track.

I add in questionable stuff as I go based John's Calprotectin results. He hasn't had one over 48 since last May. He was in the 1000s in May, and since then I've added honey and unsweetened chocolate (Nov) and it's been great. I'm holding off on any more add-ins until the Dr. pulls him off his AZA and MTX. John has had a fistula in the past, so the Dr. worries about this...

Oh, and the bacon--LOL! It's such an experience when you finally find something that works and is in a regular store. I hear 'ya! I feel your excitement, trust me! We're in Germany, so we shop at a commissary and selection is rather limited. It is what it is, no complaints. However, we have NATO folks here from all over Europe, so they do have things these families eat too. Bacon is big here, so what they do is sell whole sections of pork belly as well as pork belly slices--which is indeed BACON! It's just not seasoned or anything. It's REALLY thick!! Very tricky to fry or bake since it's so thick [and the grease pops!] but the end result is unadulterated and good to chop into bits. The point is that you can always find someone who knows a thing or two about meat, somewhere, even in a chain store. The tricky part is finding them in the store! But I assure you, someone there knows how to help you...

I have to go onto the German economy for plain THIN bacon, but they tend to offer uncured things here more frequently for whatever reason. I can find an odd assortment of meats on the economy, like duck, rabbit, etc. Our German market is sort of like a Trader Joe's quite honestly, it's a regular grocery store, just a lot of things we don't usually see in US chain stores. Things like unsweetened coconut and unadulterated coconut milk are in the regular German stores, b/c people here cook with it a lot. In fact, it's cheaper for me to buy almond flour from the Germans, than the US store, probably because people here have been using it in traditional sweets/cookies for ages...

Again, I hope for continued success for your daughter, this disease is so hard for kids, it's nice to hear when they are doing better!!!
 
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John is still doing great. Not much has changed except I've tried to level off his weight, which was going north a little too fast!! I know things are still good, very good in fact, because of his hair, breath, sensitivity to cold, not to mention the appetite. His hair is so smooth now, and SHINY!! I just want to reach out and mess it up it feels so soft. His breath doesn't reek, thank God. And it's 25F in the morning here, and he wants to wear a T-shirt and his zip sweatshirt, which is a big, BIG, clue as to his health status. When he's sick--he's COLD! The appetite is always strong. He could eat all day. Still on the same basic meds, nothing too hardcore, I'm REALLY hoping these start to drop by this summer. Next visit to the Dr., in May, I'm going to ask to reduce or eliminate the drugs. That'll give me a whole summer home to see how he reacts!! As always, having a plan of attack!

I'm glad to hear you're doing great too!! I cannot tell you how happy that makes me feel because it's a level of validation when others say this is helping. Hey, maybe in some ways it's not the best diet, but it's a lesser of two evils. John eats a lot of eggs, maybe that's not so good, but having all that inflammation in his gut, was worse!! We're 2 1/2 months until John is officially at 1 year Paleo. Hopefully all of us can keep it going, find new and exciting recipes, and see what happens!

And good God, speaking of recipes, I've been making Paleo chicken nuggets in a fry-pan, and they're too good to be true! So be careful as to what you discover along the way :*)

Enjoy those grandkids, that's motivation enough to keep it going, beyond feeling better!! Awesome!!
Serrickson, I am so glad to hear your son is doing great. I am also doing good myself. One day at a time as they say. I started this diet at literally the end of December because I developed Shingles because of my monthly Remicade doses. I am determined to get off this drug. I have a very serious case so if I can obtain med free remission with diets anybody can. I've been eating like this for 3 months, and have no plans on stopping any time soon.

Also, please share the chicken nugget recipe. NOW. :)

Also, what chocolate do you buy? I don't think it bothers me and I'd like to start eating chocolate covered strawberries.
 
Also, what chocolate do you buy? I don't think it bothers me and I'd like to start eating chocolate covered strawberries.
For chocolate i melt cocoa butter and add cocoa powder and coconut sugar to taste, then pour over roasted nuts or dried fruit (in moderation) and refridgerate
 
I want the chicken nugget recipe too!

I love the idea of adding grated apple to meatballs and will try that soon.

I'm still experimenting with making fish sticks, which are favorites of my daughter. Cod works well, and the almond meal tastes fine for the breading, but I'm still having trouble getting it to stick well enough that I can turn the sticks over halfway through baking so they brown on both sides. Any ideas?
 
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I am new to the forum (diagnosed with Crohn's last month) and I just want to say I love this thread and find it very inspiring. So happy for y'all and grateful for the info - and I too want the chicken nugget recipe. :)
 
I don't get it. I eat a ketogenic diet (90/20/90) and his doctor specifically said no to that and also said low residue and absolutely no raw anything and no nuts. So I'm guessing paleo would be out?
 
Yes, we were told low residue and no raw anything and no nuts as well. I guess if that diet works well, people should do it. In our case it didn't, and practically the exact opposite diet (SCD) put my daughter into remission! It probably makes a big difference whether one has strictures or not.
 
I don't get it. I eat a ketogenic diet (90/20/90) and his doctor specifically said no to that and also said low residue and absolutely no raw anything and no nuts. So I'm guessing paleo would be out?
The diet that doctors recommend (low res, no raw etc.) is based on the belief that there is no direct connection between the disease and what you are eating.
The aim is to minimise discomfort and maintain 'adequate' nutrition (read 'shitloads of grain and sugar').
It is based on a two logical fallacies:-

-We don't know how to cure crohn's therefore There is no cure,
-We don't know how food interactions may contribute to the disease therefore food does not contribute to the disease,

both are total bullshit, and the most interesting work being done at the moment is into the effect of food on the gut microbiome, and the effect of the microbiome on health.
While it is still early, it looks like developing and maintaining a healthy gut bacteria pays the biggest dividend.

If ones sickness is gut centred (as opposed to gut related, which apparently they all are) then it is pretty hard to just switch to a paleo (or raw vegan:ylol2:) diet as the intestine (or parts thereof) is a bleeding ulcerated infected wound and a handful of nuts or a head of broccoli can be excruciating.

This is (one of the reasons) why SCD and GAPS have an introduction diet - To aid the transition from BRAT (bland white carbs and easily digested foods)
to a low-carb real food based diet.
There are a few doctors with a clue [1] but they are trained to give pills and only study about 10 hours of ('foodplate' approved) nutrition in the whole of their degree

I had a quick look at your blogpost and obviously you are on the ketogenic diet for other reasons, I hope it goes well for you.
Some people have thyroid problems with Very-Low-Carb but at 20g of carbs you should be fine.
Aitkins is only one version of the Ketogenic diet and you may find paleo to be a bit more balanced (there are paleo lunatics, just like there are lunatics latched on to all diets/philosophies, but Rob Wolf, Chris Kessler and Paul Jaminet are all good names to google)


[1] http://www.crohnsforum.com/showthread.php?t=48559
 
Serrickson, I am so glad to hear your son is doing great. I am also doing good myself. One day at a time as they say. I started this diet at literally the end of December because I developed Shingles because of my monthly Remicade doses. I am determined to get off this drug. I have a very serious case so if I can obtain med free remission with diets anybody can. I've been eating like this for 3 months, and have no plans on stopping any time soon.

Also, please share the chicken nugget recipe. NOW. :)

Also, what chocolate do you buy? I don't think it bothers me and I'd like to start eating chocolate covered strawberries.
This is AWESOME to hear b/c the more others share their successes, the more we're motivated to keep going too. So thank you! I really hope you stay on board, feel better, and get off the drugs. Keep us posted!!

Chocolate. Well, we cheat a tiny bit and use Lindt 85%. So a teeny-tiny bit of sugar, but it doesn't seem to be a problem. We've used this chocolate for quite some time and no issues at all. It's bar chocolate, very dark of course, and not all that cheap but who cares? It's basically our only cheat!!

We use the 85% because it's not alkalized and no milk/cream etc. Basically pure cocoa with a tiny bit of sugar. No soy and anything else. I eat it all the time too! We're in Europe so Lindt is everywhere...

I attached a chicken nugget recipe that I use, it's a little mild in flavor so you might have to adjust, but people tell me it's right on so...

The key is the pan and the oil. I use a cast iron pan and so we get a little iron and one heck of an even fry. People get sort of down on frying...but that's how 99% of chicken nuggets are done anyway so what's the big deal? Baking with an almond breading just isn't the same--totally not as "durable" as I say, and not nearly the kind of flavor to do the meal justice. Frying is FAR superior.

The oil. I use Bertolli Extra Light Olive Oil. It's got a higher smoke point and this is important because you don't want to break down the oil by overheating it. I go for medium to just over medium heat. I fry about 5-6 on each side. You don't have to go nuts frying like a lot of people think you do. Not everything is stir-fry or deep frying.

I usually make 3 batches out of 30oz breasts. By batch #3 the residual breading burns a little, so watch it, maybe add a little more oil. If you use Bob's Red Mill almond flour, be careful because it loves to burn (in the oven too). I use a European brand that bakes and fries much better, and is only available here since it's a store brand.

Also, these nuggets need to sit a little, because not only are they HOT, they get crisp as they cool. So good! Give it a shot--they don't have that almond after-taste and all 4 of my kids love them so it's not just a meal for our Crohnie...
 

Attachments

For chocolate i melt cocoa butter and add cocoa powder and coconut sugar to taste, then pour over roasted nuts or dried fruit (in moderation) and refridgerate
I might have to try this although I'd have to order probably 2 of 3 items due to my location... This is a very cool idea!!

When I use chocolate in recipes it's always pure and Paleo legal, but every once in a awhile John gets some Lindt 85% b/c it doesn't bug him at all. Not much, maybe a square here and there. I guess this makes him about 98.5% Paleo!!
 
I want the chicken nugget recipe too!

I love the idea of adding grated apple to meatballs and will try that soon.

I'm still experimenting with making fish sticks, which are favorites of my daughter. Cod works well, and the almond meal tastes fine for the breading, but I'm still having trouble getting it to stick well enough that I can turn the sticks over halfway through baking so they brown on both sides. Any ideas?

Try frying. People are SO scared and needn't be. We feed kids chicken nuggets all the time that are SET in veggie oil. Check Tyson's chicken nuggets sometime--set in veggie oil. I just don't get it.

Get a good olive oil with a high smoke point, do your research. Frying in olive oil is fine and not EVIL as some people claim. How do you think the Germans make such beautiful Schnitzel? To die for!! And it's not just pork either, they make Schnitzel, basically a huge chicken nugget, out of everything from chicken to pork to beef steak to turkey. Turkey is rather good btw. Our only problem is the breading, so enter-in almond flour, which loves to not cooperate. Enter-in frying!!

I use Bertolli Extra Light and it has enough flavor for us to do the job. I don't fry my nuggets like I'm stir-frying either, medium heat works so very well!! Get a cast iron skillet. We're not deep frying here, just enough heat to sizzle when you drop the nuggets in. You can test the oil by dropping a bit of water, a TINY bit, into the pan. Don't start out high and come low, bring the heat up until it's just sizzling when you drop the nuggets. Another test method is to drop some breading into the skillet. Cast iron and good olive oil are key as the cast gives you wonderful easy NON-STICK heat and the olive oil provides a nice flavor, even if it's light. The cast is also giving you iron!!!

I fry up nuggets and 4 of 6 of us put it on salad in our house. Very nice, very motivating for our Crohnie too.
 
I am new to the forum (diagnosed with Crohn's last month) and I just want to say I love this thread and find it very inspiring. So happy for y'all and grateful for the info - and I too want the chicken nugget recipe. :)
I wish you the most success on this Crohn's journey! There is so much information out there and so many questions, but the good thing is that there are just as many people wanting to help. I pray that whatever path you take works out well for you!!
 
The diet that doctors recommend (low res, no raw etc.) is based on the belief that there is no direct connection between the disease and what you are eating.
The aim is to minimise discomfort and maintain 'adequate' nutrition (read 'shitloads of grain and sugar').
It is based on a two logical fallacies:-

-We don't know how to cure crohn's therefore There is no cure,
-We don't know how food interactions may contribute to the disease therefore food does not contribute to the disease,

both are total bullshit, and the most interesting work being done at the moment is into the effect of food on the gut microbiome, and the effect of the microbiome on health.
While it is still early, it looks like developing and maintaining a healthy gut bacteria pays the biggest dividend.

If ones sickness is gut centred (as opposed to gut related, which apparently they all are) then it is pretty hard to just switch to a paleo (or raw vegan:ylol2:) diet as the intestine (or parts thereof) is a bleeding ulcerated infected wound and a handful of nuts or a head of broccoli can be excruciating.

This is (one of the reasons) why SCD and GAPS have an introduction diet - To aid the transition from BRAT (bland white carbs and easily digested foods)
to a low-carb real food based diet.
There are a few doctors with a clue [1] but they are trained to give pills and only study about 10 hours of ('foodplate' approved) nutrition in the whole of their degree

I had a quick look at your blogpost and obviously you are on the ketogenic diet for other reasons, I hope it goes well for you.
Some people have thyroid problems with Very-Low-Carb but at 20g of carbs you should be fine.
Aitkins is only one version of the Ketogenic diet and you may find paleo to be a bit more balanced (there are paleo lunatics, just like there are lunatics latched on to all diets/philosophies, but Rob Wolf, Chris Kessler and Paul Jaminet are all good names to google)


[1] http://www.crohnsforum.com/showthread.php?t=48559

Well said. "Science is for sale" as I always say. Our GI specialist is a 100% pill-pushing-physician.

In our case, our biggest concern weren't strictures, it was re-occurring fistulas. So I figured we were safe on raw and nuts, at least in terms of acute pain. And we were fistula free for maybe 2 years. Paleo looked good.

One week John ate 3 pounds of cashews. THREE pounds. Did I need any more justification? He was 9yo. Someone on here noted that he might have had a magnesium deficiency. Probably, it's not in one blood test, so who knows? But anyway, once on Paleo, his appetite took over. As I always say, the change was that dramatic. I gave him a set of guidelines and said "have at it kid". For the first few months he ate like we had starved him.

Excuse me, we WERE starving him based on what we were advised to do.

We NEVER gave his body a chance to home-in to what it needed. The countless pounds of burgers John ate, the nuts--the two BIGGEST GI nutritional deficiencies you can think of (magnesium and iron) accounted for on Paleo--the MOST restrictive diet!! HA!! It was like his body screamed for these foods. Crazy when I look back on it now, nearly a year in.

We don't give the body much credit. It's rather smart. Why put so much faith in modern doctors when most don't even take classes in nutrition during medical school? We've lost the art of listening to our bodies. We let technology do it for us. We've lost the sensibility in how we eat and how it impacts our bodies. It's much easier, or at least perceived this way, to walk into a fast-food doctor's office and come out with a script. It's BS.

My father-in-law had extreme skin issues about 6 years ago. Turned out he was Celiac. Anyway, he went to several GPs for months with no answer. It took a 20 year old nurse's assistant at a dermatologist's office to recommend gluten free. He's been dermatitis free for 6 years now. The point is that a good portion of our medical problems don't take rocket science to fix. I think that for some Crohnie's the answer is indeed this simple. I think our John fits this profile, for the time being at least.

As for nuts--the answer IS simple here as well!!! Why go through the process of digesting chunks and bits of nuts when you can most certainly PROCESS them?!

This is what kills me--YOU CAN EAT NUTS!!! Get a food processor, grind the suckers but please don't burn out your machine. Throw it in the fridge, then go back 10 minutes later. I make cashew butter, almond butter, you name it. Make CASHEW BREAD! Hello, you don't have to sit down and eat a handful of nuts! See? The answer is simple. Modern medicine and modern eating makes us numb to what is right there in front of our faces.

Afraid of nuts? Why then make some homemade cashew butter, and hey, mix it in a blender with some coconut milk, hmmmm...honey, and maybe add some cocoa powder. Experiment. So here go your nuts, in a delicious and much easier digestible form--packed with nutrients that rivals and even destroys all that other milk-based artificial-synthetic ladened junk pushed at the market.

Now time to get off my soap box, thank you for listening to my rant.

We can do this people!!!
 
I attached a chicken nugget recipe that I use, it's a little mild in flavor so you might have to adjust, but people tell me it's right on so...

BTW, I've also made fried coconut-crusted chicken nuggets too!! Just sub the almond flour with fine rasp unsweetened coconut. I think the finer the coconut the better, but not flour consistency, of course.

You could add a touch of coconut flour to the mixture if your rasp coconut isn't all that fine... Easy recipe, and easy to modify too!!

Now that I'm thinking of chicken, I found a recipe months ago where someone made a curry cashew chicken with cashew butter and coconut milk (if I remember correctly). This is a fast and easy idea if you're into nuts and want this type of nutrition!!
 
We went to the doctor on May 5th, and we FINALLY got the results today. Basically, the same old story, although John's calprotectin did go up--to 69!

I was a bit upset at first, since he's been in the 20s, but I feel like I'm micro-managing now the more I think about it--LOL!

He's 10 so he's still sort of in that gray area with the normal reading. His doctor says less than 50 is great, but 69 to him (the GI) is 100% normal. Also, John's ESR and C-Reactive were lower than his February visit, so I'll take this reading. It's like the tests flipped, although both times they were normal. His CRP is 20% of his last visit and that reading was normal.

I'm just curious why the change, however so slight. He was around 20 for so long. We were at the Canary Islands two weeks before and he felt like crap, we had no idea some of the stuff he was eating that week, even though I brought stuff for him too. Then, his 2yo sister got the chicken pox, even though she has had the vaccines (yes, it is possible regardless of the shots, it's just not as bad). So I theorize he had a bug/discomfort of some sort related to these events.

I also had him on fish oil this cycle between visits, I know it can drive my belly crazy at times!! I'm taking it out just to play around. We'll see what happens. All I know is that his growth velocity is now approaching the 75th% so he's definitely growing.

OF COURSE, I might also want to add that now my little Paleo-Crohnie just got BRACES two weeks ago... It's been smoothie central here as you might imagine. Just another wrench in the gears here!!!
 
Thanks for the update. Great to hear the test results are still within normal range. Travelling is a bit of a nightmare. I was on pins and needles trying to stay Paleo while on a trip to Palm Springs end of March. (Ahh, the sunshine and warmth. We had a very long cold winter in Winnipeg.) It worked out pretty well, as I cooked 2 meals a day myself. Braces!?! Poor kid. As if he (and you) doesn't have enough to cope with.

I have remained strictly paleo since Dec 2013. I'm not following the auto-immune protocol as per Sarah Ballantyne's book, but I'm pretty close. I tried to reintroduce yogurt by eating 2 tablespoons 2 days in a row. NOT GOOD. It took almost a week and a half to get back to normal. (D, low energy). My dietician is quietly non-judgemental about my paleo diet. Hard to argue with 'success'. She also cautions about reintroducing foods, suggesting only 1 tablespoon of rice, for instance. She agrees dairy is a no for now. I am taking a calcium supplement, as that was the only nutrient my diet was low in. My daily calories were also a bit low, so I'm trying to increase the starchy veg. My weight is being maintained, now. Crohn's has been very quiet for quite some time, now.

Good to hear how John is doing. Keep up the good work, Dad!
 
Thanks for the update. Great to hear the test results are still within normal range. Travelling is a bit of a nightmare. I was on pins and needles trying to stay Paleo while on a trip to Palm Springs end of March. (Ahh, the sunshine and warmth. We had a very long cold winter in Winnipeg.) It worked out pretty well, as I cooked 2 meals a day myself. Braces!?! Poor kid. As if he (and you) doesn't have enough to cope with.

I have remained strictly paleo since Dec 2013. I'm not following the auto-immune protocol as per Sarah Ballantyne's book, but I'm pretty close. I tried to reintroduce yogurt by eating 2 tablespoons 2 days in a row. NOT GOOD. It took almost a week and a half to get back to normal. (D, low energy). My dietician is quietly non-judgemental about my paleo diet. Hard to argue with 'success'. She also cautions about reintroducing foods, suggesting only 1 tablespoon of rice, for instance. She agrees dairy is a no for now. I am taking a calcium supplement, as that was the only nutrient my diet was low in. My daily calories were also a bit low, so I'm trying to increase the starchy veg. My weight is being maintained, now. Crohn's has been very quiet for quite some time, now.

Good to hear how John is doing. Keep up the good work, Dad!
Thanks!! It's awesome that you're still doing well too!!

I think he might have had milk in something on our trip, and the aftershock, of course, lingers. So I hear you on the milk.

Still, it's splitting hairs for us. I'll take 69 up from 20, it could be 690.

I just can't 100% figure out specifically what got him ill. Oh well, he's two for two being sick after the Canary Islands, although last year all of his test scores were multiples of 20 as compared to now!

The ESR and CRP are perfect, so no complaints there. Goes to show that you need more than one test.

He's doing well on braces, although he ONLY eats raw veggies and fruits. He's into an avocado/choco smoothie I make, sweetened with honey. It surprises me that he drinks it, but oh well.

Pretty much had no option on the braces, he had to have them as his front teeth were really crooked, and now was the time to move everything before it all got worse. He'll be nearly 13 by the time he gets them off!!

Fruits aren't a problem, veggies are requiring some creativity though. He's going to be eating a lot of shredded carrots and cabbage, which he likes, but gets lazy about...

His doctor is feeling good about his progress--he's stretched his next visit to 4 months!!

Stay well and keep doing what you're doing if you feel well!!
 
Hello! I'm just updating John's condition. Not good.

He has had gaps in his checkups because the doctor has felt good about his progress. That's why no update for awhile.

In May 2014, his calprotectin was 69. It had been 20 or under for 8+ months, under 48 since July '13.

This September 30th, his calprotectin was 590!!! Ouch! He was between 1000 and 3000 for three years. So a 590 isn't THAT bad.

I saw it coming, his eyesight changed dramatically and his appetite was down, particularly in the morning. So what gives?

Upon an initial look at his diet, Paleo, I'm realizing that a few things are glaring: honey, chocolate, and fish oil, to name a few. I chose Paleo because chocolate was legal but now I'm looking at a SCD adaptation.

As for honey, he's gone from clear and refined honey to locally-sourced completely raw as of August. You can't see through it there's so much pollen in it! I think the pollen might be causing issues. Also, he's gotten really into the chocolate, very very dark or 100% pure, but it's an everyday thing.

Finally, fish oil. I put that back in his diet around April/May, around the time his calprotectin went up to 69. In looking at my data, he's never had a good "run" while on fish oil. I've taken it out for the past week and his appetite seems to be returning. Everybody says take the fish oil, it's good for you, but it's never seemed to help.
 
Hello folks!

I know there are people who follow this thread, maybe don't reply, but stop in and read nonetheless. I do that too, so I'm going to keep the updates going!

Anyway, we went to the doctor yesterday, 16 December, 2014. Since our September visit, we've stayed with Paleo but dropped honey, chocolate, and fish oil. The results were pretty immediate. I don't know which was the major culprit (ending our streak of normal calprotecin) but it was clear that one of these three were causing problems. My first pick is fish oil. Then I'd go for raw honey (the foggy stuff) and chocolate is my third offender. He's had chocolate and clear honey for quite awhile, fish oil was re-introduced last spring...

As for the Dr. visit:

--Instead of losing a pound like last time, we gained 5 1/2lbs!! Wow, how do you take out chocolate and honey, basically eliminate Paleo sweets, and GAIN weight?!?!

--We grew almost 1/2" in height! This is a great sign, especially since we didn't grow much over the summer, when he was apparently having problems.

Again, the calprotectin was almost 600 in September, but 1/5 of his highest. We did a calprotectin sample yesterday so I hope we'll know results soon! Overall, John's appetite is great and he's kicking-butt at school. He's even eating stuff he didn't eat as much before, so that's another good sign...

Things are looking up!!!!
 
Are you going to attempt to reintroduce chocolate and or honey?

What is he eating now that he wasn't eating as much of before?

Yes, I'm following your progress with the diet. We tried SCD and it sent her into a flare, but I may take another run at diet as we are set to reintroduce food very soon.
 
The weight gain is presumably because now he is absorbing the calories and nutrients from his food, but was not doing so before?
 
Hi all!

I'll respond to "lbligh" first:

Yes, we've been doing this since 6 years old, he's 11 now, and every time he loses even a pound/slows growing in height, we know something isn't right.

A few other clues are bad breathe, eyesight changes, trouble waking in the morning, extended time eating, and having trouble running. It sounds simple, but take running for example. He's a good athlete and soccer/baseball player to begin with, so he's able to mask his troubles. He doesn't even really know there's a problem--just thinks he's gassed or whatever. Then you watch him in a game after changes are made, and one can really see the difference. With the running, I picked up on it because they have to run the mile at school. His weight hadn't changed since last spring, and he ran a 9:45 then (8:45 the previous fall during soccer season). They did a practice run at the start of the year, during soccer season, and he ran another 9:40. Then we discovered his calprotectin was raised, changed his diet, and he ran a 8:20 a few weeks ago... I'm a runner--the shorter the distance, the harder to cut off time--especially when we're talking MINUTES!!

He doesn't necessarily feel like garbage, as some people do, with Crohn's. So we have to rely on other indicators.

As for "Pilgrim"

I'm not sure what we will reintroduce. He swears that he doesn't miss chocolate. Fish oil is definitely out, and I'm not certain that it's all it's cracked up to be. A lot of hype with the fish oil. His grandfather took it for years, now he's dealing with cancer--there are a lot of impurities in that stuff. I do know that sans fish oil, that his stools smell more normal-LOL! That's usually a pretty good hint that something isn't jiving...

What I have done is allowed potato chips, I know, not legal. But this is our answer to chocolate and honey, and he never has issues. He's completely sugar free, it's all rather amazing. In all my notes potato chips never seem to cause him problems. He says he'd rather have them than the other two, particularly chocolate... We could do worse!

One thing he didn't really like before, in his honey/chocolate days, but eats A LOT of now is cashew bread. He puts applesauce sweetened jelly on it in the morning for breakfast and we make pizza (plain sauce/uncured bacon) for dinner. I bet I make 3 to 4 loaves/week. I mill the cashews between 6 to 9lbs at a time, then bake the bread myself. It's hard work, but worth it because he likes it.

He's also eating a bit more salad lately too. My old dressing had honey, this one is oil with a touch of apple cider vinegar. He likes it. He also eats canned carrots (yeah no BPA, organic etc!! lol shame on me for canned) with garlic powder (ha!) and likes them.

I'm waiting on this recent calprotecin test. Then we take it from there. I'll post more as it all unfolds. He also had a complete blood work-up done too, a first for some time now, that'll give us a better picture.

The weight is a big deal because we try to get as much nutrients in him as we can. To get all you vitamins and minerals through food, does require a lot of eating. We he eats like this, he grows and gains, just like a kid his age should...

Best of luck to everybody, I wish those struggling with Crohn's, and their kids who might be struggling too, a great 2015!!
 
Thanks so much for posting all of this. We are set to start new meds but it gives me hope not to give up on diet.

All the best to you and your lovely family. Merry Christmas!
 
Hi Serrickson, I'm glad your son is doing better!

I tried chocolate once when I was doing paleo, and I immediately had to stop eating it then and there. It never sat well with me either.
 
Just wondering how your son is doing. Any updates?

My daughter is newly diagnosed with Crohn's, and hearing your son's story was really helpful. Thanks for sharing it.
 
Just wondering how your son is doing. Any updates?

My daughter is newly diagnosed with Crohn's, and hearing your son's story was really helpful. Thanks for sharing it.

I'm actually getting ready to contact his doctor right now. It's been a month since his visit and we've been waiting for his report... Usually it comes after the hospital bills the lab, who then forwards it to us. It tends to take 2 weeks. We're in Germany, then the holidays, and of course everything gets translated by the hospital... So, patience. But typically if something isn't right we tend to get John's report faster, or a phone call. A few years ago we got a really depressing call right as we sat down for Thanksgiving dinner, a week after his visit. LOL, they don't have Thanksgiving in Germany, of course.

Needless to say, I guess no news is good news!

I'm sorry your daughter is newly diagnosed. I hope she gets better! It's very difficult at first. We're still not 100% "there" but we've learned how to cope--and that's the most important part. John was 6 going on 7 when he was diagnosed, and the oldest of 4, and with the whole genetic correlation, we were frightened.

Overall, he's been doing pretty good since his summer hiccup. But he's been as high with the calprotectin as 3000, and was 600 in Sept '14. His weight went up as did his height since Sept, so that's another good sign. He pops out of bed again, that's a big one. Sleep is vital though, keep tabs on your daughter's sleep habits.

As far as diet, I think I've said before that we are primarily Paleo but I pick and choose. I focus a lot on SCD, I don't do Paleo without checking the legal/illegal list, in fact, I took out RAW honey because I discovered "Bee Pollen" was illegal on SCD. Honey is listed as LEGAL--LOL!!! So here I am thinking ALL honey is good for Crohnie's, NO!! According to SCD, bee pollen is illegal, which makes raw honey illegal. Urgh! Who looks through the SCD list specifically for bee pollen?!?! Oh well.

We've never done allergy testing, I've been against it to agree because I think it might give back false info based on the reality that they are 100% accurate. They don't account for intolerances. In fact, John has been tested for milk/wheat etc. a few times, only, and they are always clean. But when I take them out--the cal protection undeniably falls like a stone...

Well, I wish the best for you on this journey. When I get hard data I'll post it!! Tell your daughter that I hope she feels better!!
 
Weston A. Price way of eating and the GAPS diet is what healed my Crohn's.
This video isn't short but it is what I did to heal my Crohn's and other health issues.
https://www.youtube.com/watch?v=7ixsBn_lfXE

Weston A. Price and Paleo are pretty similar.
Yep, GAPS, I've looked at these. I pick and choose from what's out there because I don't really think one thing truly "works" so I try to mix it up a little. Keeping records really helps, I think I'm learning that going strict with one diet paints one into a corner a bit. So although we've had our successes, I try to keep an open mind... That's what got us here in the first place. I guess we are Paleo, but pull out stuff that's illegal on SCD...
 
Okay!

FINALLY, an update on John's progress. He had a visit at the end of September 2014 that measured his calprotectin at 590. That was the highest since spring '13. We took out honey, fish oil, and chocolate.

We went back for a checkup mid-December '14. We did a complete blood workup this time. I JUST got the results a few days ago, his calprotectin dropped to 376. Down 220ish--and all the bloodwork is NORMAL. So...

There is a lot to speculate here. I haven't been in a place like this for awhile, so I don't truly know where this is going! I do know that good blood, is good news. Apparently his sed rate & CRP are fine, as well as iron etc. When those are good, it's a good place to be!!

Another item of interest, the time of year. Since we live in Germany, and it was Xmas time, running a calprotectin test during this time of year might be a bit inaccurate; given my liberal nature when visiting German markets. No, he's not pigging out on candy and ice cream, but he will partake in bun-free wursts, maybe a schnitzel here and there, some fries...Grandma was here too, so we let him have some fun.

Next visit is in March!!!
 
Thanks for the update. Glad to hear that sed rate and CRP are good, and that calprotectin is down--seems like everything is going in the right direction!

My 12-year-old daughter was diagnosed in December, and started Remicade on Dec. 24. After 3 weeks, she still had no symptom relief (her sed rate was still climbing and she still had severe abdominal pain), so we started an SCD/Paleo-ish diet 10 days ago. She hasn't had abdominal pain, gas, or diarrhea since we started. Her appetite still isn't back, but her weight is holding steady. I'm hoping as we continue to add more allowed foods--and as the Remicade hopefully kicks in--her weight will start climbing.

Anyway, I wanted to post this here because she was initially very resistant to trying the new diet (as was my husband). It was reading this thread that convinced them to give it a try, and now they are both very happy that we did. So thanks again for sharing here.
 
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Weston A. Price way of eating and the GAPS diet is what healed my Crohn's.
This video isn't short but it is what I did to heal my Crohn's and other health issues.
https://www.youtube.com/watch?v=7ixsBn_lfXE

Weston A. Price and Paleo are pretty similar.
You will never look at humans in quite the same way after watching this vid! Worth every second of the 2hrs, and so glad to see it posted here. Vital info. Thanks cit.
 
Great news, serrickson! I hope it continues.

We started militant scd in fall when my son was struggling to get off prednisone. He did EEN first. We've continued and all is ok so far. Fingers crossed. I'm now intrigued to explore differences between scd and paleontology, although I'm a bit nervous about adjusting what seems to be ok for now.

Thanks for all the good info.
 
Thanks for the update. Glad to hear that sed rate and CRP are good, and that calprotectin is down--seems like everything is going in the right direction!

My 12-year-old daughter was diagnosed in December, and started Remicade on Dec. 24. After 3 weeks, she still had no symptom relief (her sed rate was still climbing and she still had severe abdominal pain), so we started an SCD/Paleo-ish diet 10 days ago. She hasn't had abdominal pain, gas, or diarrhea since we started. Her appetite still isn't back, but her weight is holding steady. I'm hoping as we continue to add more allowed foods--and as the Remicade hopefully kicks in--her weight will start climbing.

Anyway, I wanted to post this here because she was initially very resistant to trying the new diet (as was my husband). It was reading this thread that convinced them to give it a try, and now they are both very happy that we did. So thanks again for sharing here.

That's great to hear re: your daughter!!

I don't know if paleo/scd/etc. are cure-alls, you have to really watch it and educate yourself. I take a little bit from everything I'm reading. Right now, I'm reading about parasites--usually we hear about bacteria--but I found this topic interesting. I'm upgrading my cooking equipment, learning what else I can do. It benefits the whole family, I'm trying not to focus on meat. A spiralizer is my next purchase.

I honesty don't think it's a bad thing to take out the SUGAR and the soy, first off. Soy can be some super nasty stuff and it's in EVERYTHING. The fact is that with the sugar, our produce isn't what it was waaay back when, and thus, nutrient-depleted. So it simply doesn't taste the same, ergo, the companies add more sugar...

I have 3 other kids, and I'm finding that they don't need sugar for survival!!! LOL My picky 6yo, who is our sweet tooth, now calls our dried bananas "his gummy candy" which is spectacular to me. None of our kids ate candy etc. or even THAT much sugar, but it's in everything as well.

With John, and a lot of people, milk and gluten seem to irritate. It simply makes sense: if your gut is irritated to begin with, AND you're eating commonly irritating foods--it's only logical to think that it'll make matters worse. This is exactly what is happening to our son.

It makes me laugh when the doctor says to drink more milk-based products (protein smoothies etc) to put on weight, and for nutrition. Guess what?! IF his gut is inflamed, and thus not absorbing nutrients anyway, what is the point of ingesting milk-based products that are only going to irritate his gut MORE?!

It's like filling a rusty old bucket with water that has a HOLE in it. The water isn't going to stay, now matter how much water you fill it with, and at the end of the day, it's going to get even rustier!

And the whole deal with Paleo isn't the meat. It's the produce: fruits and veggies. You need the protein, but an actual serving isn't as big as us Americans think it is!!

I hope everything works out with your daughter!!!!
 
You will never look at humans in quite the same way after watching this vid! Worth every second of the 2hrs, and so glad to see it posted here. Vital info. Thanks cit.
Yes, this is my next big thing! I haven't watched the video yet, but I've seen stuff online and I glanced the presentation. My wife has Hashimoto's, the TEETH, fluoride--I've come upon this in a round about way in the past.

Of course, John's been in braces since May '14 and has another 19 to 20 months left...
 
You will never look at humans in quite the same way after watching this vid! Worth every second of the 2hrs, and so glad to see it posted here. Vital info. Thanks cit.
I'm about an hour into this video right now, absolutely FASCINATING! It is a very well done presentation and I HIGHLY recommend watching it. Well worth you time. Thank you for those endorsing it on this thread, I feel my life is better for watching it, and I feel less crazy. LOL

The teeth. Of course, John has bad teeth! Totally crooked, cavities since 5. Braces should be on for up to 30 months total--$$$$$.

It helps to shed light into what a lot of us here are questioning and contemplating. I think some of us feel GUILT to a degree, especially those of us who have Crohnie kids. Did we mess up their diet? Did we not do something? Was it this; or that?

My dad's dad was a bread subcontractor in New Jersey prior to WW2. He had his own truck and delivered for the big companies. His dad owned his own general store, chock full of western food products. After WW2, my grandfather was in the milk delivery business for 40 years. About a week after he retired, he had every last one of his teeth ripped out. They were always told, including my dad, that it was the well water... My dad has put tens of thousands of $$$ in his teeth. I can go on and on about the teeth.

Btw, I've always had pretty good teeth. In fact, people are surprised that I've never had braces--including my dentists. I was a healthy kid, sometimes "overweight" but our doctor didn't seem worried. I've always been very strong, since birth, and my mom said I never really cried or fussed... Oh and fertility? They mention this in the video. Not a problem! We were fortunate that when we decided to have a kid, we just got pregnant right away. A lot of our friends take time or have trouble. Hmmm...

Ah yes, the presenter talks about babies not crying, well-nourished babies presumablly, and I immediately think of my youngest two--who more or less never cried. John cried like nuts, and I remember someone posting on here about John potentially having a deficiency, magnesium possibly, since birth--that maybe mom had as well. Who knows, a theory; but interesting to think about.

Again, a great video to watch. My takeaway halfway through, is exactly what I expected when we started Paleo (with a touch of SCD) almost 2 years ago. And that is, what we're doing is a workaround; a reaction to a bigger problem. It's NOT really THE solution. It's a compensation for something, plausibly, the degradation of our food system. This is important to note, especially considering how diets like Paleo, are so very commercialized already.
 
**GOOD NEWS UPDATE**

From March 16, 2015 doctor visit, Calprotectin is now at 90!! Sweet!

SCD/Paleo sweet; of course...

When we're at this level, life is great. His doctor considers our last two years as stable remission. I think John's Calprotectin limit could be higher than what they suggest, I've heard this might be the case for some folks. If we're 300 and lower, he's in great shape. Height is up, weight is good. Blood tests great.

As for a recap, John was at nearly 600 in September. Then we took out chocolate, fish oil, and honey. Calprotectin went down to 376 and is now down to 90. Medication is the same as it has been for a few years now: 10mg MTX/week and 100mg Aza/day. 5mg Folic Acid the day after MTX. We're coming up on two years Paleo (with some SCD influence). Pretty much feeling great since May/June '13, with the tests to prove it.

I did take out his calcium supplement since the last visit. It wasn't Paleo/SCD legal, but it didn't have the usual suspects, although it does have soybean oil etc. Calcium will go back in at some point, I don't think it is a problem.

Since the last visit, John had a few days off of school starting almost immediately after his last ortho visit. He had new hardware put on etc. We feared that he might have an issue with the metals in his braces...(metal intolerance/allergy). But with a falling Calprotectin, apparently his braces aren't a factor. John didn't have a flu shot this year, so my guess is that he had the flu.

Also, John tried chocolate, ONCE, since dropping it in October and it made him sick to his stomach. He wanted no part of it, and said he feels it definitely doesn't work for him. The older he gets, the more we're seeing him figure out what makes him good. Great!

John has had a bit of honey these past few months, just in salad dressing, only a few times--and only clear. No problems. So, clear (def no RAW!!) honey will be brought back to give him something extra when we need it.

But make no doubts about it: chocolate and fish oil are a NO. Fish oil has always screwed John up. Interestingly, I'm finding that TNF research on fish oil, is a bit divided, in some ways it's inflammatory, some ways it's not...

I hope everybody is doing well. My big research now is TNF and Weston A. Price. I highly recommend investigating these two areas if you haven't.
 
Thanks for keeping us updated, serrickson. Western A Price got me started on the broth, now I'm using the following in conjuction with the broth.

seal oil (yes, I had to debate the background PC ethics police)
cod liver oil - I chew the gel cap til it pops, spit the cap
natural vitamin E
selenium - important to take this with the E
vitamin D 5 000
liquid vitamin B
neem plus a few diy remedies:
bicarb soda + molasses
colloidal silver
1 cannabis butter cookie each evening - this makes me wake up starving. Breakfast is stale bread chucks gently baked in oven with goats cheese, cottage cheese while an egg is poaching in an inch of broth; then covered in shredded dandelions and rocket from the garden. I'm eating like a truck driver for the first time in my life lol and I'm tiny - 5ft nothing and under 50kg - and feel fantastic!
 
Thanks for keeping us updated, serrickson. Western A Price got me started on the broth, now I'm using the following in conjuction with the broth.

seal oil (yes, I had to debate the background PC ethics police)
cod liver oil - I chew the gel cap til it pops, spit the cap
natural vitamin E
selenium - important to take this with the E
vitamin D 5 000
liquid vitamin B
neem plus a few diy remedies:
bicarb soda + molasses
colloidal silver
1 cannabis butter cookie each evening - this makes me wake up starving. Breakfast is stale bread chucks gently baked in oven with goats cheese, cottage cheese while an egg is poaching in an inch of broth; then covered in shredded dandelions and rocket from the garden. I'm eating like a truck driver for the first time in my life lol and I'm tiny - 5ft nothing and under 50kg - and feel fantastic!

Weston A. Price is powerful stuff. It's more of an attitude and approach for me (for all 6 of us in our family) than a silver bullet like the other diets tend to be. Humans like a specific answer to everything: ergo Paleo and other diets, and/or drugs. It's a box. I can say this after cooking religiously Paleo for 2 years now. Don't get me wrong, I owe it to Paleo, but we've found a good mix is great. Elimination Diet it is, basically. We're Paleo, but SCD on honey and chocolate. Trial and error--an open mind. LOL! Now I suppose we're part WAP based on their take on fish oil... Not cod liver oil, fish oil according to how it reacts to various aminos. WAP is a pretty flexible approach, I wouldn't call it a diet per se. They want you to eat old-school and I think that's great.

WAP is some philosophical stuff, from our perspective. I have 4 kids: 11, 9, 7, & 3. I'm afraid for the younger three, but I'm not willing to restrict their diet for sake of prevention of Crohn's (that might never happen to them, regardless). So, WAP is helping us to feed all the kids high quality variety that they can tolerate (which is minimal for John, yet very diverse for the rest). We can't do it all yet, but WAP is forcing us to re-examine quality. I would really like to grind my own heirloom grains, for example. We eat a lot of eggs so that's no biggie. I'm making ground beef jerky now, complete with ground liver to boot. It smells horrid in the dehydrator, but tastes awesome (and doesn't smell after the fact LOL). Although John can't tolerate dairy at all, I'm seriously considering making my own yogurt for the other kids. WAP is responsible for all of this.

So it's Paleo with a touch of SCD for John; and basically WAP for all!

Thanks!!
 
Hi,
Just found this forum and glad to hear of some similar success stories with Paleo style diets and Crohns or UC. My son, 11, and I (mom), 45 both have Crohns and we have been eating Paleo for about a year and a half after consulting a functional medicine doctor. She explained why our gluten sensitivities and immune systems react with dairy, grains and other foods which are inflammatory, like sugar. Not sure I bought all the data but we were desperate for my sons sake and wing to try anything. He had been on prednisone, entocort, enemas, and was on large amounts of Remicade which wasn't working. We had tried gluten free and lactose free, but I am convinced he was going to need surgery soon unless we found something else.

Within 6 weeks of paleo eating, plus eggs since he had an antigen reaction to those too, his symptoms cleared up! We spent the next 9 months slowly reducing the Remicade and other meds and he is now mostly symptom free with with no meds. He is eatings eggs now too. We cheat a little more on things liked sugar, rice but not too much. He is still sensitive though and seems to get some diarrhea and cramps every few weeks, it was worse since last fall when I think he got a parasite or bacterial infection. Wish we knew lots more about the microbiome and keeping a healthy gut, etc. still trying to figure out good pro and pre biotics.

Biggest challenges are avoiding foods while on trips, having normal social food life etc. I recently messed up and cheated too much while on vacation with a little dairy and non gluten grains, maybe sugar, but not that much really. I think having a colonoscopy with lots of biopsies made it worse, so now I'm suffering and on prednisone again because given my history of flare ups, I can't let it go too long or I will have an obstruction. 30+years of flare ups and scar tissue...

True believer in this form of treatment but I agree with much of what has been said about why it works and causes...this is not a fad for us and I wouldn't eat this way unless necessary because it is not easy, but it's healthy, works and mostly quite good when you spend the time to prepare.

Thanks for welcoming me to this conversation.
 
True believer in this form of treatment but I agree with much of what has been said about why it works and causes...this is not a fad for us and I wouldn't eat this way unless necessary because it is not easy, but it's healthy, works and mostly quite good when you spend the time to prepare.

Thanks for welcoming me to this conversation.

Thanks AMGray for joining the conversation! I love hearing what others are going through because it helps to motivate others, so I appreciate you contributing your experiences! I hope you both are doing well.

Steve
 
UPDATES!

Wow, where has the time gone?!?!

I haven't posted an update in quite some time because we've been going through the roller coaster ride of moving back to the USA. In case you aren't aware, our family has lived in Germany since 2009. We've dealt with all of this Crohn's and diet experience overseas, using foreign facilities and doctors only. What an experience! We've spent 6 weeks in the USA, total, since '09. So getting out of here has been a crazy process, simply to prepare for the inevitable chaos has taken months. Right now, we are in the midst of chaos! We board a plane in exactly 2 weeks. My youngest daughter was born here, she doesn't even know what a Walmart is or a "grocery" store for that matter! I have no idea, no CLUE, how this Crohn's thing will play out as an American actually in America. Will we be as negatively received with diet alterations as we've been here?! Wow, it's all sinking in now.

My last update was for John's March checkup--his Calprotectin was 90. We suspected his braces were raising his Calprotectin, and this suspicion hasn't changed. We have about 8 months left with braces, then a retainer. Maybe we'll see a change with different materials, although things haven't been bad. I'm not going to nitpick.

Okay, so since March, we've had two additional visits: one during the beginning of July, and the other--his final visit in Germany--the last week of August. The July visit saw John's Calprotectin raise to 161, but all of his blood work was wonderful and he's still growing in height and gaining weight. CRP, ESR, and iron/calcium are all very very normal. We're still on 100mg/dy Azathoprin, 10mg/wk MTX, and 5mg/wk folic acid.

Still Paleo. Still combining a little SCD and other ideas along the way.

I'm still waiting on August test results. Again, we're leaving a foreign country, so it's a process to get the records. Stuff needs to be translated, we are in a new temporary home, etc. There are six of us, plus one [now] severely hyperthyroid cat. Crazy!

And yes, my time lately has indeed been swallowed up by the hyperthyroid cat. And obviously, I've seriously considered putting her on 100% Paleo, LOL; although it appears her food is actually pretty close to legal.

As far as John's Paleo Diet is concerned, I've had my hands tied because the resources here are simply nothing compared to the USA. This is nothing new for us. You can't just run to a Whole Foods or order on Amazon and expect a product in a day or two. I've had to be more creative than ever since we're moving--especially since most of my cooking tools are now on a boat, somewhere...and have been for nearly a month now. I've had to make my own nut butter several weeks in advance to make it these last few weeks. It's taken a lot of thinking and calculating. I can only take SO much with me on an international flight!

Nevertheless, I packed a dedicated suitcase full of cooking tools that we have been, and will be, traveling with. I've been a traveling Paleo cook since mid-August now. What an experience! In my suitcase I have a 110v blender (my beater, junk blender) which forces me to lug a transformer; I also have a cast iron skillet, stainless mixing bowls, various measuring tools, a turner, a spatula, a scraper, a loaf pan (a must!!), a decent cookie sheet, and a few other things I can't think of right now. The point is that at a minimum, I can make John smoothies, so long as I have clean ingredients, which I can indeed get my hands on. Of course, I can do frittatas, all sorts of other egg dishes, nut breads, cooked veggies, etc and so on.

No excuses!

I do expect John's Calprotectin to rise a little again since I've allowed him some last minute samplings of Weiner Schnitzel and Pommes lately. Yet he's so dedicated to this, and we figure that literally 99% of the time John is dedicated to his form of Paleo--because he feels good!

Until next time--I wish everybody the best at everything they're doing!

Steve
 
Hi Everybody!

Life has been extremely hectic: we've spent the past 2 1/2 months since I last posted, adjusting to the move from Germany to Colorado, after 6+ years in Germany. It's been a huge culture shock, but great to be back.

The kids have bounced around schools, temp housing; but we've finally moved into a permanent house--and we've been slowly getting everybody checked out--from teeth to physicals. This week we had John in to see his new pediatrician so as to get referred to a GI. We had suspected he was getting sick over the move, but we were pleasantly surprised to find out that he actually grew nearly one full INCH over the past 3 months! It took him over 6 months to grow his last inch in height, so this is a VERY good sign that things are going well.

Given his history, when he's growing in height, his Crohn's is very much controlled.

John's still sticking to Paleo/SCD with success. I've designed a chili recipe for him that's nutrition-packed and he eats over-easy eggs everyday for breakfast. This seems to be the winning combination for height growth. He was doing a lot of smoothies over the summer, but he's cut out A LOT of red meat and switched to more turkey/chicken/eggs. Maybe this helped a bit?

I'm tickled, no doubt. I was worried about the impact altitude might have...among other things.

Another tidbit--he just visited the dentist--and NO problems. When things are down, his teeth (and eyes) suffer.

I've also realized today that John is coming up on 3 years for his last upper/lower GI. You know what that means? It's 3 years in May/June that we changed his diet. THREE! YEARS!

We went as far as prepping him for a steroid pulse and Remicade in May '13, only to abandon that after switching to Paleo. At the time, the doctor said Remicade would buy a year given his severity, maybe two if lucky. You need to remember John was 6 when he was diagnosed. The doctor wanted to infuse him with HGH once things got better, then most likely we'd be talking cutting out intestines by his 12th birthday. This was the plan.

Well, here we are: no steroids, no Remicade, and no resections. And no HGH!

We go in to see the our new GI in a few weeks and I hope it's not a battle to get him on board with our successes...

Wish us luck!
 
Glad the paleo diet has worked out for your son serrickson. This disease can be beaten back significantly, if people simply tried to eat healthy and stayed away from trigger foods.
 
Glad the paleo diet has worked out for your son serrickson. This disease can be beaten back significantly, if people simply tried to eat healthy and stayed away from trigger foods.
Well we went to the orthodontist on Friday and you should have seen my beet red face trying to explain what's going on with John, his diet etc. We just started with a new ortho since moving back to the USA. Second visit.

The Dr. insisted I basically had no idea what I was talking about. He tried to teach me about "allergies" I said no--he'll pass every allergy test--he has triggers and intolerances, one potentially being the half pound of nickel in his mouth! I explained to him that we test his calprotectin, CRP, etc.

He more or less told me I was crazy, kept using the term allergies, explained symptoms. I was SO frustrated! Needless to say, we attempted a 504 plan for John's school and the counselor said "he looks fine" so it's unnecessary. BTW, I'm heavily degreed in education. I asked John if he wanted me to pursue it, he said no. So we wait until he gets sick to tackle that one!

My point is that ignorance runs wild with IBD. You get to a crossroads when you simply have to laugh if off. We all know the drill here: eating healthy helps quite a bit--but the reality is that it's not always feasible and we don't always have the proper support.

I don't know. I just think of when John initially got sick, everything seemed normal, then BAM--fistula--rushed to the ER.
 
The Dr. insisted I basically had no idea what I was talking about. .
yeah, get used to that.......
Take ya pills and shut up........

but seriously, google will give you lists of paleo/primal doctors, not saying they're any good. My thoughts are you will find almost as many dickheads amongst them as the general population of doctors but at least you won't have to argue about food

Paleo Physicians Network
http://paleophysiciansnetwork.com/search?utf8=✓&country=United+States&city=Colorado+Springs&state=CO&zip=&x=41&y=11

nowhere near you but at least they exist.....
http://paleophysiciansnetwork.com/doctors/CA/Alameda/dwight-jennings-dds-iccmo-medical-solutions-through-jaw-orthopedics
"Practice limited to jaw orthopedics and orthodontics with application to TMJ, sleep apnea, fibromyalgia, generalized hypersensitivity syndrome, paleo orthodontics, pain management, parkinsons, tourettes, seizures, "

http://paleononpaleo.com/paleo-doctors/
 
TODAY was the big day: FIRST visit to the GI doctor, in the USA: EVER!

6 1/2 years with pediatric Crohn's...

Everything went pretty well--good first impressions--and the doctor was very receptive of our family history and John's diet. In fact, he asked many pointed questions about our family history and very much liked the organized notes I had brought with me. He liked the idea of the diet in combination with the drug regime and felt that together they're probably extending the remission we've experienced.

Who knows where we'd be ONLY on drugs? Remicade for a year, and then FLARES? More steroids?? We already LOST two years of height on steroids, just to scratch the surface on revisiting the steroid option. Of course, this stunting entered HGH into the conversation back then in '10, '11, and '12.

I don't think I was dealt MAD MEN style drug marketing today, I think the doctor raises some good questions, and made some legitimate points that coincided with my own fears and opinions. Basically, is it time to change the drugs in combination with the diet so as to secure John's health decades from now? We're in a good place right now, BUT we need to seriously look at the chronic impact of what John's currently on. That's the message I got today and I agree wholeheartedly. Sure, the AZA and MTX with Paleo seems to have dramatically prevented surgery and fistula reoccurrence, but are we setting John up for cancer or liver issues, among other things, later on down the road? Maybe.

Right now we're basically starting from just after "scratch" I suppose. This actually might be a blessing in disguise. We have blood tests and the Dr. wants a bone scan--which is great if you ask me. He was concerned about John's use of steroids early in his drug regime, so this is just to double-check how things are. A bone scan was something mentioned but never done in Germany. Our doctor there thought supplementation was good enough. Different strokes for different folks.

The NEW doctor doesn't think upper/lower GIs are necessary as he says John looks really healthy and the last checkup in Germany was good. He was happy to see Calprotectin history going back 4+ years, but mentioned that the normal levels might be different with John, which was in line with my thinking. With that said, he was shocked at John's Calprotectin levels hitting the multiple thousands way back when, and assured me THAT was completely abnormal, LOL!

He checked John's fistula and was impressed at how everything looked. We're continuing with the MTX, AZA, and Paleo since the doctor feels as though it's working albeit not necessarily ideal over the long term.

SO his biggest concern is John's drug regime--which is something we've been tossing around in Germany with the German doctor for the past few years. The German doctor REALLY wanted John off the steroids, BUT still needed to hedge against the potential of fistula, so that's why the AZA and MTX mix. It was a short-term fix that really began to take hold after starting Paleo. The German doctor wanted to reduce the AZA down to half, but we never got there. I always got the feeling he wasn't confident of chancing the reduction given how severe John's case was starting at 6.

Of course, the problems here are clear: carcinogens, liver trashing, and so on. But in defense of my German doctor, again, John was in a severe pickle from the get-go. He already had a fistula which took 10 months to heal. The CRP and ESR were way off and Calprotectin was 60x normal as of 2011. The German doctor was convinced he'd be cutting out intestines by age 12. He's 12 NOW!

SO between the MTX, AZA, and hitting the diet hard with Paleo (much to the chagrin of my German doctor) John's had a new lease on life over the past 3 years...

BUT now after today's visit, it's clear with my new American GI, that our current drug regime has outlasted the acute problems we were dealing with 3 years ago. Back then we discussed weening steroids, stuff like that. Times have changed.

We tossed around some potential ideas today, basically all of them exclude Azathioprine, which is fine by me. As I usually hear, he thought the MTX/AZA combo was radical and nothing he's ever seen done. LOL is an understatement.

If anything, he mentioned using 6MP in place of the AZA and hoping no significant change occurs. For YEARS I've read about how different people react differently to these drugs, one a prodrug, but basically both doing the same thing. Crazy. Who knows what might happen if we did a switch. I'm all for it. He mentioned using 6MP as a standalone, or MTX as a standalone, but probably not together. Again, I'm willing to take chances here. I don't like them together. I'd rather pick one then have it fail, and then jump to the other, have that fail, then jump to a biological.

And who knows, MAYBE diet alone is the answer? Nevertheless, I think the diet is something that might make the drugs work optimally. I can't ignore how bad off John was, at such a young age too: 6! It's like an athlete, sure, you can run and lift weights to your little hearts desire, but optimize the diet as it pertains to YOU, and you optimize the results. In our case, Paleo helps BIG TIME in combination with SCD. No bee pollen (raw honey), chocolate, etc.

We talked nutritional therapy (dairy based)--which he laughed about since John is on Paleo--and we discussed biologicals in detail. Safe to say nutritional is out. I've been here before! Deja Vu! Apparently he likes to combine biologicals with 6MP. URGH, of course we have problems inherent there, but this is now management 101, the whole paradigm shift theory, so I'm a bit more receptive now as compared to 3 years ago.

Back then there were risks too BUT Mr. German doctor was telling me maybe Remicade or other biologicals could buy a year or two, TOPS; based on John's severity?!?! I didn't like those odds back then. Now though, I think we've learned a few things, and the diet is a critical part of this puzzle. I'm MUCH more inclined to invest in a change to a biological, for example, because now I believe that John's diet in combination will give him a sustainable and safe solution. Paleo and a biological, for example, could give us 5, 10, or MORE years as compared to a standalone biological that might struggle to gain two years of remission.

SO the Paleo journey continues. I'm thrilled to be at this point because I'm convinced that John would have had his guts cut up by now without a dietary change. We just need to readjust our perception of TIME here and FINALLY treat this thing as the chronic disease that it is--not the acute problems it presented a few years back. Paleo undoubtedly has helped us get here.
 
JOHN UPDATE!!

FIRST calprotectin test results in the USA came back on 6-19-16 and the results were great:

<16 ug/g

Looks great, sounds great; but here's the catch--I've been in Europe for over 6 years and they use mg/L...

According to my calculations, the conversion is a factor of 5. Thus ALL of the previous calprotectin levels I've posted here were in mg/L. Pretty significant oversight.

If correct, John's very first calprotectin ever was 3140 mg/L, which factors out to be 15,700 ug/g. That's absurd.

Everything else is normal and great, his blood tests look good although I see indications that he's not getting enough folic acid--his MCV is slightly elevated. His Vitamin D was tested in December and was normal low. No shock, I lived in Germany. It's overcast 300 days/year. I just have never been able to zero in on the Vitamin D level. I've known for some time that D will act like a TNF blocker. The dose? Who knew? With a shot in the dark I went for 2,000 units which I believe is 500% for adults, he's 12. I imagine with the food he eats, John gets about 650% to 700% of his RDA in Vitamin D. Judging by his growth spurts since I've gotten aggressive with the D (he's on a good Cal-Mag supplement now too) I think it's pretty obvious the D is helping. All of his tests since we've been back in the USA, since testing started in December, have been spot on.

But geez, unless someone can tell me if I'm converting mg/L to ug/g incorrectly--these old calprotectin levels are appalling. Not sure if my new GI knows the old scores were mg/L... I see him in a month and we're going to talk about it. Last meeting, he used words like "astonished" and "never seen a case like this" in my X years doing this. He's been nothing but supportive with the diet.
 
Not absurd, just really high. We had H's last reading come in at 3600. (Canada)

I can't remember how your son's disease activity correlated at the time.
 
SCD has broken my inflammation cycle and I'm feeling better than I can remember, on day 58 here and I highly recommend giving it a try if you are struggling.

Here is a fantastic new resource:

Edit: It won't let me post the link since I'm new, but Dr. David Suskind has a lovely new book called NIMBAL therapy and a video on youtube of a talk from this spring. You can find it by searching youtube for a video titled "Nutrition Suskind Fecal Microbial Transformation Diet" or something along those lines. His channel is called NIMBAL and covers his work at the University of Washington and Seattle Children's Hospital with IBD patients and his experience with diet as therapy. It is fantastic information, especially to share with dismissive doctors.
 
Not absurd, just really high. We had H's last reading come in at 3600. (Canada)

I can't remember how your son's disease activity correlated at the time.
So I'm assuming the 3600 is ug/g?

From what I understand mg/L is the old unit of measurement, ug/g is the newer; yet in Europe they tend to still use mg/L. Who knows if it's still used in the USA, in certain areas? Our labs here are sent out, in Germany they did everything in house at the hospital. Who knows? Sounds like we're comparing apples to oranges, at times, on this forum.

I remember researching this a few years ago because I saw a reading in ug/g somewhere, probably Wiki of all places. Nevertheless, I was overseas so the ug/g measurement didn't apply--although when everybody posts their scores here, the units are nearly always left out...

I've noticed the discrepancies in units for other tests as well. Who knows if GI docs on the east coast use the same units as the west? North to south? It's extremely significant because we all throw around numbers here, comment on them, but don't get religious with the units.
 
SCD has broken my inflammation cycle and I'm feeling better than I can remember, on day 58 here and I highly recommend giving it a try if you are struggling.

Here is a fantastic new resource:

Edit: It won't let me post the link since I'm new, but Dr. David Suskind has a lovely new book called NIMBAL therapy and a video on youtube of a talk from this spring. You can find it by searching youtube for a video titled "Nutrition Suskind Fecal Microbial Transformation Diet" or something along those lines. His channel is called NIMBAL and covers his work at the University of Washington and Seattle Children's Hospital with IBD patients and his experience with diet as therapy. It is fantastic information, especially to share with dismissive doctors.
THANKS! I'll have to check that out. Does it give me reliable equations and/or peer-reviewed research that converts ug/g to mg/L and vice versa, perhaps? LOL

At any rate, this all sounds wonderful and I wish you the best! It's tough, I've been mixing Paleo, SCD, and WAPrice for 3 years now with tremendous success. I just get ticked off because people don't buy what John does, and now I'm looking at old calprotectin readings and realizing they might be MUCH higher than what I've reported here, as compared to what others post. That's significant because it generalizes that my interventions have found success with a super severe case. In Germany, his GI always discussed surgery--but you could tell he was super nervous about it. This was a man with 30+ years of experience and the chief of medicine. When one converts the readings, well, now I know why. I knew John was sick, I've even had eyes on his scope visuals--but I didn't think it was this bad as compared to what I've read on this forum and others for 6 years now...
 
Serrickson,

What is your sons height and weight now that he is 12?

Do you notice foods over here bothering him more often than foods in central europe?
 
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