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04-15-2014, 02:19 AM   #61
serrickson
 
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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!!
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Son diagnosed at age 6: August '10

Perianal fistula: August '10
Upper/Lower GI: August '10
Prednisone: August '10 to November '12
AZA: August '10 to present
MTX: November '11 to present
Folic Acid: November '11 to present
Upper/Lower GI/MRI: January '13

100% PALEO: JUNE '13 to PRESENT

IN CLINICAL REMISSION SINCE JULY '13

Calprotectin high: 3000 (November '11)
Calprotectin low: UNDER TWENTY!! (February '14)
04-19-2014, 09:00 PM   #62
Markdam
 
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I'm reading this for my mom is been so helpful thank you to all the posters
05-28-2014, 12:48 PM   #63
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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!!!
05-28-2014, 01:17 PM   #64
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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!
05-29-2014, 05:57 AM   #65
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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!!
10-28-2014, 07:18 AM   #66
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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.
12-17-2014, 03:20 PM   #67
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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!!!!
12-18-2014, 02:27 PM   #68
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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.
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Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
12-20-2014, 07:11 PM   #69
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The weight gain is presumably because now he is absorbing the calories and nutrients from his food, but was not doing so before?
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My 13-year-old daughter was diagnosed with Crohn's 12/2013, via endoscopy, colonoscopy biopsy, and MRE.

After four months of little improvement with Pentasa and Prednisone, we tried the Specific Carbohydrate Diet. Almost overnight, all the symptoms resolved. Currently off all meds. Bloodwork is completely normal.
12-21-2014, 04:57 AM   #70
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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!!
12-21-2014, 08:00 AM   #71
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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!
12-21-2014, 09:03 PM   #72
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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.
01-09-2015, 08:33 PM   #73
pdx
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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.
01-15-2015, 02:46 AM   #74
serrickson
 
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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!!
01-15-2015, 02:50 AM   #75
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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.
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...
01-25-2015, 04:28 PM   #76
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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!!!
01-25-2015, 07:26 PM   #77
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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.

Last edited by pdx; 01-25-2015 at 07:27 PM. Reason: fixing a date
01-25-2015, 09:47 PM   #78
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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.
01-26-2015, 11:32 AM   #79
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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.
01-29-2015, 02:19 AM   #80
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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!!!!
01-29-2015, 02:34 AM   #81
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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...
01-29-2015, 04:31 PM   #82
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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.
04-11-2015, 03:06 PM   #83
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**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.
04-17-2015, 02:11 AM   #84
Nym
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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!
04-19-2015, 02:33 PM   #85
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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!!
04-19-2015, 07:56 PM   #86
Nym
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Brilliant work, serrickson! ♥ All your kids can only benefit from all that you're doing.
05-04-2015, 11:54 AM   #87
AMGray
 
Join Date: May 2015
Location: Austin, Texas
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.
09-06-2015, 01:53 PM   #88
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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
09-06-2015, 02:57 PM   #89
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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
11-28-2015, 01:54 AM   #90
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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!
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