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12-05-2015, 10:13 AM   #91
Poppysocks
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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.
12-06-2015, 12:57 AM   #92
serrickson
 
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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.
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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)
12-06-2015, 02:02 AM   #93
hugh
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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/se...zip=&x=41&y=11

nowhere near you but at least they exist.....
http://paleophysiciansnetwork.com/do...aw-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/
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SN Goenka
12-15-2015, 12:29 AM   #94
serrickson
 
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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.
06-23-2016, 12:41 AM   #95
serrickson
 
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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.
06-23-2016, 06:38 AM   #96
Pilgrim
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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.
06-23-2016, 08:33 AM   #97
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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.
06-23-2016, 09:03 AM   #98
serrickson
 
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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.
06-23-2016, 09:11 AM   #99
serrickson
 
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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...
06-25-2016, 01:49 PM   #100
Poppysocks
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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?
06-29-2016, 09:39 AM   #101
serrickson
 
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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?
Well I just measured him and he grew another inch in the past 4 months. His growth rate is about 3"/year ever since we moved to Colorado, interesting since everybody tells us people at altitude are typically shorter, due to the altitude... Don't know if that's true.

Height is 61 1/4" and weight is 115lbs. He's just under the 75th percentile for height, on pace for 5' 10" to 5' 11" which is good considering I'm just under 6ft.

The growth in height is the most damning evidence. His calprotectin was <16 so that's super good. As far as the unit reporting there, mg/L or ug/g, there is a lot of confusion it seems but from what I gather and calculate, the density of stool is approximately 1 which means both mg/L and ug/g should directly convert over.

As far as a difference in food, we shopped on a military base and on the economy, German stuff is pretty much on par with what we have here, in some cases better. I'd argue the water is actually of better quality. The food, to me, is a non issue coming back. I have greater access to various products here, that's for sure. It was only in the past few years the Germans really started getting onboard with things like coconut oil, plain nut butters, and so on.

Over all though, the BIGGEST change is Vitamin D. Supposedly, and I've known this for some time, Vitamin D acts like a TNF blocker in the right dosage. No, it's not going to have the same result as a biological such as Remicade perhaps (usually you're really sick when you get on that, of course) but in John's case, since he's technically been in "remission" the Vitamin D should have a very good maintenance effect. Of course, we live in Colorado, which is super sunny AND we are a mile+ closer to the sun AND it isn't super hot (it's dry) so the kids are outside way more often, especially at school. The sun exposure (Germany is so overcast) and the fact I've got John on religious Vitamin D supplementation really have kicked his success into overdrive. He's on 2,000 iu/day and from my calculations, that should be very reasonable over the long term, and safe. His GI here tested his Vitamin D levels during the very first round of testing, it was low normal at 31. That was all the proof I needed to get him on high dose Vitamin D, and I'm going to ask for his level to be checked when I go to the GI in August. John's CRP, ESR, and calprotectin have been super low since I implemented the vitamin D regime, AND he's growing dramatically. Connect the dots, combined with Paleo/SCD, it's really working well.

The last time I visited the GI, the Dr. discussed removed one of John's drugs. This was before all of the recent developments. Quite possibly in August he'll be off MTX or azathioprine...

John's case is important, we must remember, because he's a pediatric case. The signs and symptoms tend to be a bit more dramatic. The time considerations are much more intense: you can't dilly-dally with Crohn's in general, but with a kid, you have cognitive and physical development to deal with. He's in school, he is supposed to grow. When you're, 39 like me, who cares? Crohn's has ruined his eyesight (which has stopped changing dramatically since the dietary changes in '13) and his teeth. Of course, no cavities since he's been on Paleo and he's on pace to remove his braces by Jan/Feb '17. The fact that his teeth are cooperating is another piece of damning evidence.

I am so confident with what we're doing, I'm actually going back to work as a high school teacher in August. I haven't worked in 10 years, save for clinicals and my Master's. Since everything looks great, now is the time!
06-29-2016, 08:49 PM   #102
Poppysocks
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Sounds great. I am a pediatric case myself. I was diagnosed when I was 8 and have always been pretty severe.

My problem was I didn't begin to look at diet till I was in my early mid 20s. After I was already finished growing.

His height and weight seems perfect for his age. He could probably even lose a few pounds at that height. I myself didn't hit 115 pounds until I was close to graduating high school. Of course this was while I was eating garbage day after day. And my parents let me.

Your son is lucky to have you, I wish my parents would have looked into my diet more as a child, of course they both worked so that didn't help.

Also, the fact that you made him start eating like this so young is so crucial. Because it adjusted his body to good food rather than garbage. A lot of crohnies have damaged their intestines so much over years and years of eating literal crap they can't even look at a raw vegetable without succumbing to pain.
06-30-2016, 12:56 AM   #103
serrickson
 
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Sounds great. I am a pediatric case myself. I was diagnosed when I was 8 and have always been pretty severe.

My problem was I didn't begin to look at diet till I was in my early mid 20s. After I was already finished growing.

His height and weight seems perfect for his age. He could probably even lose a few pounds at that height. I myself didn't hit 115 pounds until I was close to graduating high school. Of course this was while I was eating garbage day after day. And my parents let me.

Your son is lucky to have you, I wish my parents would have looked into my diet more as a child, of course they both worked so that didn't help.

Also, the fact that you made him start eating like this so young is so crucial. Because it adjusted his body to good food rather than garbage. A lot of crohnies have damaged their intestines so much over years and years of eating literal crap they can't even look at a raw vegetable without succumbing to pain.
LOL--he could stand to lose a few pounds!! His BMI was pretty high but when he'd lose weight back in the day (ages 6-9) he'd lose SO much SO fast. Our German GI was fine with his weight and I agreed, as a counter to the loses. He lost 10lbs in 10 days or so when he was 9, from 80 to 70lbs. His pediatrician nearly had a heart attack. Steroids is a tough one, it makes you fat and stunts your height BUT will make you "better" or at least out of the hospital. We did that for 2 years, no regrets, he was messed up big time.

The thing we're noticing now is that his height is really catching up. I want to say he was 110lbs last September when we moved here, so he's gained 5lbs but also grew 2+, maybe 2.5?? I'll take it. My wife commented today about how he's thinned out--the way he's supposed to be doing at this age.

It's been a tough process. I don't hold anything against anyone, as I don't think we're better than anyone. Everybody has their own personal evolution, this way just happened to be ours. Society doesn't always work in our favor, advertising, holidays, etc. Peer pressure. Schools. I was lucky to have had the time to do things the way they turned out. I was lucky to see how people in other countries deal with this stuff--that was invaluable. We're not rich either, as I read some of these Paleo books etc. and develop resentment from time to time...

I was lucky to have had a Master's that required two clinicals in education, and a research thesis--a BIG help--and this forced a paradigm shift on me.

I was also lucky that John is a tough SOB and his siblings have been so supportive. He sees the impact he makes and that motivates him. He recently asked about the "ice cream" I made in Germany--coconut cream/milk blended with frozen strawberries. You have to eat it fresh on the spot!! Pretty good. Anyway, his 4yo sister, all she wants is ice cream, she's had the real stuff maybe once or twice ever LOL!

So we're at Walmart in the frozen fruit section, and my oldest daughter is like, are you making John's ice cream, dad?!?! And it was at that point my 4yo daughter goes "OOooo I want strawberries in MY ice cream!" and grabs a frozen bag of 100% strawberries for her ice cream. I wouldn't have EVER done that as a kid. John and his 3 siblings were so excited, it's stupid I guess, but cool to see how they look at food because of him. They've seen him sick, they've seen him better; they don't want to end up like him. They've been to most of his doctor visits, and I do that on purpose. His 4yo sister will ask for an apple and tell everybody "because it's healthy!"

You're 100% correct--you need to start early on the diet. I believe that. Once you go so far with eating a regular diet, the body just can't handle much change. John eats SO much fiber, it's crazy. Most Crohnies wouldn't dare!

His siblings eat dairy, grains--not much restriction--but I do have a few. I do not buy regular sugar at all, haven't in 3 years. None. I won't bake with it. If the kids want treats, I make ALL of them, and I use fruits or honey as a sweetener. John doesn't even get honey! With 4 kids, the honey bill gets big, fast! So you learn to keep the consumption low. THAT's how it was done back in the day.

I buy certain items organic--usually the dirty dozen--like strawberries etc. I buy bulk salad organic and prep it, and pretty much all fruits and veggies, at home.

I avoid all soy, BPA, the usual suspects and only use cast iron. It's tough at first but I won't use anything else but cast. It's all I've used for 3 years. My boiling pots are stainless, which is fine. I've been wanting to get the chlorine out of the water--very noticeable in Colorado. But that gets pricey. I'm going to get a big filtration cistern very soon. You do what you can, every little bit helps. People don't realize you don't have to be 100%. Priorities and do what you can (and can afford). I've been looking at water filtration for 2+ years, but at $300-$400, GEEZ! It'll happen, it just takes time. I've had other priorities.
09-20-2017, 03:10 PM   #104
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Hello. It is a good and exciting new for your kid using Paleo/SCD mixed diet in order to have a longer remission period. But I also read the book of the Breaking the Vicious Cycle. Do you think the fish oil and honey(like Manuka from New Zealand ) are the illegal food? When can reintroduce them? In China, some people take the strict SCD diet with eating the fish oil and honey very time. Do they take the mistake? Need your warmly responses! thanks
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