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Does it work?

The short answer is – Yes!

Although it’s an experiment of 1 and admittedly not at all scientific, I thought it would make sense to report on the recent results from my daughters blood work. It turns out that the strategy we are following – borrowed heavily from the Core Strategy I outline in this blog –  is working.  While no plan is perfect, its nice to know that this one is safe and effective.  We set a goal about 18 months ago…to find a way to provide some diet flexibility beyond the strict SCD program that we had successfully implemented in the past. It does appear that the addition of LDN and key supplements has made some diet flexibility possible. I’m sure we’ll have to make adjustments over time, but we’re pretty pleased with the results!

Here is the plan:

  • Wheat/Gluten grain and mostly dairy free diet – potato & rice are well tolerated. (I’m sure there is some cheating going on, but not that much.)
  • LDN – 4.5mg capsules each night
  • Monthly B12 injections
  • Daily supplements: Vitamin D3 10,000 iu, Boswellia/5Loxin 150mg, Curcumin/BCM95 500mg, Krill Oil 1,000mg & Bacillus Coagulans (DuraFlora – 2 capsules)

Here are the blood results:

  • Vitamin D level – 25(OH)D = 79 (I think we are in “theraputic level” territory)
  • C-reactive protein (CRP) = .56 (is a protein found in the blood, the levels of which rise in response to inflammation) anything under 1 is considered a low level of inflammation.
  • The erythrocyte sedimentation rate (ESR), = 18 also called a sedimentation rate (SED) , is a common blood test  that is a non-specific measure of inflammation.  For women, anything under 20 is considered in the normal range.
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  1. Christine
    February 22, 2012 at 12:25 pm

    I would love to know more about this diet plan. I am somewhat familiar with the SCD diet but think it might be too strict for my daughter to follow. I see that you are removing gluten and dairy which seem to be a way to go for a lot of people these days, giving that gluten seems to bother more people than ever. How do you take care of your daughter’s calcium needs? My daughter would never take a huge calcium supplement because she’s already on so many meds for this and other disorders. She has Fibromyalgia and Hyper-,mobility Syndrome as well. I actually looked into Osteo-biflex for her joint pain issues and a lot of the homeopathic ingredients you listed in your last e-mail are in there!! All anti-inflammatory!

    • February 22, 2012 at 1:30 pm

      The diet is loosley based on SCD but with rice and potato added back in. We cook most meals with meat/fish and vegetables. She’s also a fan of berries. She is a picky eater, so this is a pretty narrow diet. Honestly, we have not focused on calcium – she does eat broccoli, spinach and celery. Getting calcium from dairy not ideal anyway. For FM & HMS, I would look into a coctail of LDN, Boswellia, Curcumin and fish/krill oil. (I’m not a big proponent of homeopathy – I just can’t get past the idea that there is really nothing in the formulas that you take.) I would also make bone broth/gelatin a staple. I have a link to an article on bone broth in my links.

  2. February 22, 2012 at 3:10 pm

    Hi Alan,

    Excellent news with your daughter! Very encouraging for everyone else.

    With regard to B12 injections, I am having trouble finding a discussion regarding sub-lingual / oral B12 versus an injection. Chris K seems to kind of gloss over it and frankly there’s not too many others out there who even get into it!

    Any thoughts? Is it just extremely difficult to absorb? Destroyed by stomach acid?

    For those without insurance the injections (presumably doctor-administered) seem prohibitive.

    Thanks so much in advance.

    • February 22, 2012 at 3:24 pm

      If you have Crohn’s, typically the terminal ileum has had some damage – and that’s where B12 is absorbed. So taking it orally is a waste of money. Some do fine with sublingual, others with a B12 patch. The cheapest option may be to do injections yourself at home. http://www.b12-shot.com/ If you have not started regular B12 injections, don’t wait. They make a huge/immediate difference.

  3. Inna
    February 22, 2012 at 9:04 pm

    I am glad that your Core Program is working and your daughter’s blood test’s results support it..How old is she now and what age was she diagnosed? Was she on any meds before your Core Program?

    • February 22, 2012 at 9:46 pm

      She was diagnosed at 10. She’s 18 now. We did one round of prednisone in the beginning and that was enough motivation to find a better way. She was on a strict SCD diet for 18 months in the beginning and that worked well. She slipped off the diet after that but was fine for years untreated. Then things went south about 2 years ago. I wanted her back on SCD, but she wanted more flexibility. That’s what led me to research LDN and key supplements. Since diet is so critical, I wasn’t sure this would work. And I think she could do even better if she would dive in to a full paleo diet…but this is working, so I’ll take it!

  4. Lauren
    February 24, 2012 at 8:28 am

    I have some questions about LDN. What is the correct dosage for a 21 year old? Is it based on weight,age or degree of condition? Which is better oral or cream? How long does it take to see results? If D. is present and a pill is taken is the pill ineffective? What results did you see first? Is it safe?Thank you so much.

    • February 24, 2012 at 10:55 am

      Lauren,

      The correct dosage for everyone can be different. For most adults the standard dose is 4.5mg each night. But adjustments (usually down but sometimes up) may be needed. People under 100 pounds or more sensitive may do better at 3mg. There is some debate in the LDN community about oral vs. TD cream. Dr. Zagon, who pioneered LDN, claims that naltrexone does not cross the skin into the bloodstream to work properly. Dr. McCandless and Dr. Skip disagree with him. I don’t know who to believe at this point, but our doctor has seen better results with the oral…and we’ve done both and seen better results with the oral as well. (The cream does work great for wound healing!) Be prepared for some minor problems with adjusting in the first week. Most of the issues are around sleep. For us it was tiredness in the first few days. Because of that, I suggest starting at low dose, 1mg, and ramping up gradually over a few weeks. Some see positive results within days, others take months…so it varies. LDN is absorbed very quickly…within minutes, so D should not be a problem. And LDN is know to reduce D. That may be the first sign that its working. (I’d also add s. boulardii and l. glutamine to help with D). In terms of safety, Naltrexone is safe at 200mg/day with over 30 years of use. At 4.5mg/day it is very mild stuff. The biggest side effect (after the first week of adjustment) is usually deeper sleep and fewer colds.

      But please note that LDN is not a miracle cure. It can be the ticket alone for some. Others may only see modest benefit. Some may need to troubleshoot and tweak their diet. For example, certain foods – wheat, soy and dairy casein – actually compete for the opioid receptors that LDN works on. Restricting these foods will increase the chances that LDN will work. Turns out that these are key foods that cause the problem in the first place.

  5. Inna
    February 24, 2012 at 9:41 am

    Thank you for your reply. Your determination and her compliance is remarkable! She needs to be in a good shape for college years. Especially, if she decides to pursue medicine like many others with chronic illnesses.

    • February 24, 2012 at 10:32 am

      I think she’s headed for Math/Engineering. She’s shown no interest in medicine.

  6. Lauren
    February 26, 2012 at 12:52 pm

    You mention s.boulardii and l. glutamine help with D. How much and how often should they be taken? Thank you.

    • February 26, 2012 at 3:11 pm

      Doing the intro GAPS diet and bone broth may help more but here is a quote from Jinni Patel Thompson on l. glutamine: “An amino acid called L-Glutamine is the best remedy I’ve come across for diarrhea and it works very quickly (within 2-3 days usually). It’s virtually tasteless and dissolves easily in water. Start with 1/4 tsp. per day mixed in cold or room-temperature water and drink it on an empty stomach. If that’s not enough, increase to 1/4 tsp. two or three times a day. Then increase the dosage gradually (if you need it) to 1/2 tsp. then 3/4 tsp., up to 1 tsp. two or three times a day. L-Glutamine directly nourishes and heals the mucosal lining of the intestine and causes the bowel to reabsorb the water in your stool, thus reducing the number and frequency of bowel movements.” And on s. boulardii 4 50mg capsules 3x per day for the first 2 days, then 2 capsules 3x per day for the next 5. http://www.florastor.ca/studies/4clinical_studies_C1_1_1990_Hochter.pdf

  7. Dave
    February 28, 2012 at 2:00 am

    crohnsdad – First I just want to say that I think you have a great website here it has been an invaluable resource for me the past 2 months. I am a 24/M who was dx with CD in January. Right now I’m tapering my Prednisone, ramping up the Imuran, and supplementing daily with Vitamin D3, Florastor, Calcium, and Bifera. I will say that I am feeling better now, but I also know that this journey is long from over.

    I mentioned LDN to my doctor and he didn’t know what it was (I couldn’t remember the whole name, only the “LDN” part) and I am wondering how did you get the doc to get your daughter LDN? It seems like a fairly new treatment option (and safe…which is why I’m interested), and to be frank, me showing a printout to him from a blog site wouldn’t necessarily be great “evidence”. However, some of the studies posted in journals may work.

    I’ve started in on the SCD diet, but it’s hard being a single guy on his own, who didn’t know how to cook before and all… I’m going to give this a real shot for the next year or so and see how things come out when I get “scoped” again. I used to talk to my parents once every 1-2 weeks, now I seem to be texting my parents often so I can figure out how to cook the meat without giving myself food poisoning!

    On a side note, I’m sorry that you are no longer associated with the CCFA. I can see the argument from both sides and it is unfortunate it can’t work. Conflict of interest can get in the way of great things sometimes. Also, tell your daughter to be an engineer! I was an engineering undergrad student and now am an engineer in the US Navy working on a masters in engineering. It has been an invaluable field of study, and transformed the way I think. At the very least, it has changed how I think through problems and has helped me ask the right questions to my doctors.

    • June 6, 2012 at 10:55 am

      This info is very depressing for me. After 6 years on the scd diet you are still hanivg this stuff happening to you? I am beginning to think the doctors may be right that it isn’t curable like leprosy or something. I just started the scd diet about 3 weeks ago and haven’t had any change of my UC diarrhea but I thought after a few months to a year for sure I would get my internals healed enough to go back to a normal diet and not have to go to the bathroom every half hour like usual. But after seeing you being on it for 6 bloody years and still suffering like this I don’t know where else to go. The scd diet is the last thing that I had not tried, and I was so hopeful it would work. I really hope it will, I can’t take this diarrhea anymore, I can’t live a normal life anymore.sorry to bother you, I really hope you get better. I hope your documentary brings us all some solution which will never come from the medical profession as there is no money for them in a food based cure.

      • June 6, 2012 at 12:25 pm

        Esra, In some respects, you really have not started treatment till you start changing your diet. So this is really just the beginning. In addition to diet LDN, daily bone broth, s. boulardii and l. glutamine will really help with diarrhea.

  8. Lindsey
    March 5, 2012 at 4:10 am

    Alan,
    I’m so pleased to read that your daughter has been able to be a bit more flexible with her diet.

    Do read Jack Kruse’s thoughts on cold treatment if you haven’t already. Not sure how brave your daughter is but it has made a surprising difference to me and I have only been using it for a couple of weeks (and not too much ice!). Especially read how cold rapidly changes the ratio of oils in cell membranes. It also helps with vagal nerve damage which is common with uc although I’m not sure if crohns is the same.

    All the best
    Lca

    • March 5, 2012 at 2:01 pm

      I had not read about Jack Kruse’s theory on thermogenisis. Very interesting. I really doubt I’d be able to get her to go there. Although she does like cold weather!

  9. steve
    March 5, 2012 at 11:13 am

    have you had any endoscopic confirmation of healing yet? i’ve followed a similar program for a couple of years with good symptomatic improvement and excellent lab work. i’ve steered clear of further scopes at this time, as i feel they are unnecessary. nonetheless, i’m still curious at times how things look in there…

    also, curious on how you decided on the duraflora? i have tried many..currently on primal defense. was on biokult prior and haven’t seen a big change from one to the other. i do seem to do better on ones that are more spore-forming (like b.Coagulans). haven’t tried duraflora, but might look into it.

    • March 5, 2012 at 12:30 pm

      In working with our daughters integrative MD we’ve decided that if symptoms and blood results are good there is no need for scope confirmation. As for b. coagulans, frankly I just tried to find the most affordable brand. There are only a few brands and its hard to tell if there is any difference… http://www.naturalgrocers.com/nutrition/new-probiotic-star

  10. March 5, 2012 at 2:31 pm

    Alan I was going to demand! that you explain Jack Kruse to me since I first learned about him from your website. (joking around of course.) I have been mired in all his posts since you put the “leaky gut” link up there. Really intense stuff! Reading and understanding it is more of a dialectical process though — I’m realizing it can’t really be explained straightforwardly.

    I have basically steered myself toward your core strategy, no boswellia yet, and still looking forward to getting into bone broth. Came off a flare with pred (I’ve promised myself it’s the last time) two months ago, feeling like I have some time to make the diet adjustments. Wheat and mostly grain free was not as hard as I thought; the paleo people seem to be right about being able to cut out the cravings with the proper diet. Omega ratio and eating more fish has been actually pretty fun.

    Lindsey, if you are reading would you mind describing your Cold Thermogenesis experience a little bit? Do you exercise? JK’s blog comments are a lot to sift through….

    Alan I hope you don’t mind a little hijacking here in the comments but please say so if you do!

    thanks, GH

    • March 5, 2012 at 3:00 pm

      I’ll be honest, most of Jack Kruse is over my head but he does force you to stretch your thinking. Glad that you able to make some of these changes and hopefully seeing some results!

      • Lindsey
        March 8, 2012 at 9:32 am

        Alan I hope you don’t mind if I answer Gray whale here.

        I have done a couple of weeks of ct starting with face dips and ice on my shoulders and abdomen. Now progressed to half full cold baths. I combined this with his meal timing advice and low evening lights from the leptin rx and post -leptin posts. It’s been surprisingly easy.

        If I interpret him right (I’ve been reading from the start and my brain is still scrambled) cold makes us much more leptin sensitive, it uncouples metabolism to favour brown fat and heat production. It takes over from the light cycle to control some of our metabolic functions and has a huge effect on our hormones, correcting thyroid and adrenal problems rapidly. He says it will be very useful for vagus nerve damage but either I have missed the mechanism or he has not described it yet.
        He has just described an amazing effect on pufas in our cell membranes. They enter cell membranes rapidly to make the membranes more fluid in when we become cold adapted ( Ct 6 and more in question 272).

      • Lindsey
        March 8, 2012 at 9:46 am

        I don’t yet know the significance of this for ibd but JK answered a question from Jordan Reasoner of scd lifestyle to say that ct would help ibd but it would also need strict adherence to diet – ketogenic, lots of seafood and offal and no dairy at all (I don’t know if this is just in winter or if it can be relaxed a bit in summer). Once the cell membrane has changed and starches are eliminated epigenetic changes are speeded up.
        Too high o6 in tissues causes some uncomfortable problems in cold adapting so diet should be good first. You have made me think I should sit down and pull out all I can related to IBD and I hope Jordan goes into the specifics of ibd in more depth with JK.
        I havrarely have aches from occasional over exertion now.

      • Lindsey
        March 8, 2012 at 9:50 am

        Re excercise: I have an active outdoor life but no special routine other than a concious effort to sprint up stairs. I rarely feel achy after over exertion now so something must be improving.

        Jack’s VAP post has some useful information about how HDL cholesterol levels reflect gut integrity.

        Thanks Alan. Sorry that was so long and I hope I have got it right. There is so much to think about.

      • March 8, 2012 at 1:06 pm

        I have not taken the leap into cold training or sprinting, but this is really interesting stuff.

        Slightly related, here is a neat post from “That Paleo Guy” on the link between omega 6 fats and increased intestinal permeability. Its been widely discussed that omega 6 fats are pro-inflammatory, but very interesting that there is strong evidence that a key part of the mechanism for inflammation is its role in increasing permeability – http://thatpaleoguy.com/2012/01/05/dietary-fat-can-modulate-intestinal-tight-junction-integrity/ & http://www.ncbi.nlm.nih.gov/pubmed?term=The%20Type%20of%20Dietary%20Fat%20Modulates%20Intestinal%20Tight%20Junction%20Integrity#

  11. March 5, 2012 at 2:35 pm

    PS for anyone’s info I am doing 5 mg sub-lingual B12 (twin-lab) every 5 days. Definitely gives a buzz! Going to check levels in a month to decide if I should make the jump to injections, kind of freaky even for a 33 year old wannabe tough-guy

  12. Dave
    March 5, 2012 at 2:56 pm

    crohnsdad – I’ve been looking around the site, but to no avail – do you have an email address to contact you at with questions we’d rather not post on the site? Thanks.

    • March 5, 2012 at 5:56 pm
      • juliette authier
        March 14, 2012 at 8:41 pm

        Thank you so much for compiling this information here and sharing the results of your daughter’s healing regimen. My 12 year old daughter was just diagnosed with Crohn’s and the MD’s want her on meds. We are starting the GAPS diet (not too far off from how we usually eat so it is doable) and supplementing with vitamin D, Cod Liver Oil, probiotics (getting some VSL#3 soon) and a L-Glutamine based supplement called GI-Revive. I am looking into the B12 shots and the other supplements you have mentioned here and am so thankful you are taking the time to post on this blog so that others can benefit!

        The GI-Revive has some aloe in it and from what I am reading, aloe is contraindicated for Crohn’s. Can you tell me more about that? http://www.rockwellnutrition.com/GI-Revive-by-Designs-For-Health-DFH_p_1006.html#tablist

        I would like to correspond with you via email in the future, as I have so many questions, but I need to do more research on my own and plan to read everything on your blog as a first step.

      • March 14, 2012 at 9:25 pm

        Juliette, Sorry to hear about your daughters diagnosis, but it sounds like you are on the right path. I’ve not heard about GI-Revive, but it does have an impressive list of ingredients. The trouble with Aloe is 2 fold. The latex in aloe has a pretty strong laxative effect, and its sugars are a polysacharride – making aloe SCD/GAPS illegal. The idea is that these sugars are both poorly digested and potentially feed pathogenic bacteria.

        B12 shots will make a big difference. And I’d be happy to chat via email.

        Alan

  13. March 14, 2012 at 8:30 am

    Thanks Lindsey!

    Really interesting stuff and definitely seems to be the “talk of the town” right now.

    I am dialing in diet first (Thanks Alan!) and then will consider getting into the CT protocol.

  14. juliette authier
    March 23, 2012 at 5:12 pm

    I am looking into the LDN for my daughter and working with an amazing ND here in Portland, OR who does FMT- Fecal Microbiota Transplantation, aka human probiotic infusion.
    http://fecalmicrobiotatransplantation.com/FMT/home.html

    We are considering all the options now, as my daughter is having a major flare and although her GI doesn’t think meds are needed right now due to the biopsy results, the pediatric surgeons (they had to drain the abscess again and found a fistula) are recommending Remicade.

    Here is my treatment protocol thus far (for 12.5 yo girl):

    Diet:
    Gut and Psychology Diet
    No grains, sugar, starch or simple carbs; emphasize gut healing foods
    Begin with only bone broth plus meat and vegetables cooked in broth
    Fermented food/beverages with every meal
    Gradually add egg yolk, avocado, butter, coconut oil, lard, raw veggies, fruit, coconut, coconut flour, nut flours and nut butters, meats and veggies cooked without broth.

    Supplements:
    Cod Liver Oil: One tablespoon twice per day
    Vitamin D: 5,000 IU daily
    Curcumin (Turmeric): Two 500 mg caps, twice per day with food
    Boswellia: Two caps, twice per day with food
    Probiotics: S. Boulardii and VSL#3
    GI-Revive: 3 caps, twice per day on empty stomach
    Liquid Multivitamin: sugar & additive free
    Exercise will help modulate inflammation; aim for three hours per week
    Larrea tridentata (chapparal) applied to the abdomen in castor oil packs

    Optional:
    B12 sublingual/shots: 500 mcg/d for a month or intramuscular shot (B12 labs were normal)
    Gentian/scuttelaria tincture (a few drops before eating) to increase appetite if not hungry
    Eleuthro/opolopanax tincture (1 dropperfull twice per day) if tired
    Think about who a good donor might be for FMT (human probiotic infusion)
    Talk about helminthic therapy
    Look into Low Dose Naltrexone

    For flares:
    2-3 day water fast (or broth?) will pull an inflammatory bowel patient out of a flare
    Can take up to 1-2 grams of curcumin every 2 hours when flared. 2-4 caps every 2 hours
    If the GI needs to prescribe a steroid, choose budesonide over prednisone

    • March 23, 2012 at 5:39 pm

      Wow. You really do have your act together. And I am very impressed that you can get your 12 year old daughter to comply. My 18 year old won’t do that much.

      Here are my thoughts: GAPS is wonderful, but leave out the peanuts. I have no idea what Dr. Natasha was thinking to allow them. True nut butters are fine. For Curcumin make it BCM95, and Boswellia 5Loxin both are far more bioavailable. And check out Fermented Cod Liver Oil. I would do the FMT…but it may not be needed if you can get things under control with the rest of your plan. Although Helminths are better than standard drug treatment, they still are immune suppression. I’d hold off.

      LDN is really a “no brainer”. It is cheap, safe and effective. There are no downsides to it. It really should be a first-line treatment and it will give your daughter some flexibility.

      With this plan, there should be no flares!

      • juliette authier
        March 23, 2012 at 5:46 pm

        Thanks Alan,
        I was really thankful to find so much information via your blog a couple weeks ago. It has helped me understand things so much better! You are helping many by doing this.

        It has only been four weeks since my daughter went to the hospital with the perirectal abscess and diagnosed with Crohn’s so I still have much to learn. I will start the LDN; the ND also said it would be a great idea. I will move it out of the consideration phase and onto the treatment plan!

      • March 23, 2012 at 7:23 pm

        Juliette,

        I should have commented on exercise as well. I would put yoga (or something similar) at the top of the list. Also consider something “intervals” based…like sprinting. There is some interesting stuff going on with growth hormone and Crohn’s, and sprinting/high intensity interval training is a powerful, natural growth hormone releaser. http://www.ingentaconnect.com/content/adis/smd/2003/00000033/00000008/art00005 And the great thing is you need very little (3 sessions/week…and the sessions can be as brief as 8, 30 second sprints with 90 seconds of slow walking/rest) to make a big impact. http://coachrj.blogspot.com/2011/02/sprint-8-interval-updates.html & http://www.nejm.org/doi/full/10.1056/NEJM200006013422203

        Heavy endurance type exercise like long-distance running should be avoided. Believe it or not, endurance exercise can make autoimmune diseases worse…they actually increase intestinal permeability and increase overall inflammation – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3257608/

        Please do keep me posted!

  15. Carolyn Micek
    March 31, 2012 at 5:30 pm

    hi Alan, thank you so very much for your posts. They have been very helpful to me!

    I have been on the SCD for 14 months, starting with my Crohn’s diagnosis last January. I am significantly better but still feel somewhat fragile at times. Because of your writing, I am hoping to start LDN in the next few weeks. I will take my internist a copy of the study that you have posted on your blog and hope that she can be persuaded to write me a prescription.

    I have a question about probiotics. As you know, only acidophilus is allowed on the SCD. Your daughter is currently taking b. coagulans and may start VSL#3 (I am assuming that VSL#3 is a probiotic). How did you make these decisions? Have you found SCD legal forms of these probiotics?

    thank you for your response!

  16. Juliette
    May 21, 2012 at 2:05 am

    Hi Alan,
    Just wanting to update on my daughter’s situation (13 yrs old and diagnosed in early March with perianal crohn’s/perianal abscess/fistula) and ask some questions about LDN.

    Three weeks ago I had to take her into the ER (3rd time) to get her abscess drained (was painful and filled with puss) and this time they put in a drainage seton (bummer). Two weeks prior to this, her CRP level was at .5 compared to 7.5 three months ago, and I thought the abscess was healing quite nicely. In hindsight, I feel like we could have got it opened and draining on our own with heat/sitz baths/hydrotherapy but now that we went through another minor surgical procedure we are on the docs radar for needing more aggressive treatment.

    She was Rx’d 6MP and a two month course of augmentin. I refused both, even while being pressured by the MD’s who think I am being negligent and that my treatment plan (almost identical to what you outline here in this site) just won’t work to heal the fistula and abscess. There is one GI who recognizes diet and the supplements as potentially healing for the intestinal tract, but not for the perianal disease and the colon.

    I had naturopath Rx the LDN and we finally got that started that 3 nights ago. I feel confident that this will aid in the tissue healing and immune system regulation as well as joint pain releif. Her colonoscopy showed no granulomas or severe damage, no Hpylori bacteria and negative for celiac, but there was inflammation of the ilium as well as colon around the abscess site. Her other main symptoms are joint pain and fatigue, both of which have gotten better with the curcumin, boswellia and GAPS oriented diet.

    Turns out that my daughter is not as committed to a 100% GAPS/SCD/paleo diet as I was hoping. She confessed that two weeks prior this last ER visit she had been eating gluten and sugar without me realizing it. She says she is sick of broth and soup now so we are down to once a day with the broth. This stuff is hard for teens, as I am sure you know! I am hoping that the LDN is going to be the missing piece that will help accelerate the healing process and reduce inflammation, but it is difficult to be sure under so much pressure from the traditional GI docs with them saying that I’m putting my daughter at risk for permanent colon damage by denying her the 6MP. That stuff is toxic and she is so sensitive that my gut tells me she’d be one to have a negative reaction/side effects.

    Reading more of the amazing posts and links on your site helps me feel much more clear and certain about the path we are on, so I thought I’d check in here and give an update. How long do people usually start seeing results with the LDN? From your research, do you feel like it could help with the fistula healing up? I am having trouble finding info on that aspect.

    • May 21, 2012 at 6:58 am

      We’ve not faced these tough issues, and LDN may or may not be your answer…but here is a quote from the clinical trial for LDN: “Eighty-nine percent of patients exhibited a response to therapy (>70-point decrease in CDAI, p<0.001) and 67% achieved remission (CDAI score <150). ….In both subjects with open fistulas, closure was noted with LDN." This happened during the 12 week trial.

      On the bone broth front, you could substitute gelatin and/or Hydrolysate (http://www.greatlakesgelatin.com/consumer/CollagenFAQ.php) You can mix the stuff with anything and make some interesting combinations.

      One possible olive branch with your doctor could be Rifaximin. Recent trials show a 64% remission rate and 21% fistula closure rate. Combined with diet, curcumin & LDN you should make some progress. http://www.ncbi.nlm.nih.gov/pubmed/22155172

      I wish there were simple answers. I do hope this helps though.

      Alan

      • Juliette
        May 21, 2012 at 11:51 am

        Thanks for the reply! I know there are no simple answers and yes, this helps a lot. I by no means expect you to give me any medical advice, but I appreciate the information you have! I hadn’t heard of Rifaximin and will look into it and talk to the GI doc about that option. I feel like 2 months isn’t enough time to jump the gun and say that using the immune suppressing drugs (6MP) is the only answer for remission and healing, but I do want to get this under control asap. The (experienced and balanced) naturopath I have recently consulted with was very encouraging of my approach and she swears by LDN and is convinced that a gluten free diet is the number one key to crohn’s healing. She has had success in treating a few crohn’s fistulas naturally, and that gives me hope, but sometimes it’s hard to know if I’m doing the right thing. In the next few weeks things should get more clear and we’re taking it one step at a time. Thanks for the links!

      • May 21, 2012 at 11:58 am

        6MP would not work any faster than LDN or Rifaximin anyway but with a much higher risk profile. And Gluten is evil stuff!

    • May 23, 2012 at 8:50 am

      Hi Juliette,
      My situation overall is very similar to your daughter’s, though I have been dealing with it for a long time. It’s been pretty unsightly at times, but I have lived with a significant-sized fistula since 2005, just kind of accepting it as part of my body.
      For the Crohn’s itself I used to just rely on prednisone and taper off with 6 MP if I had a flare. When flares started getting closer together last year I knew I had to make a change; I’ve come to strict Paleo, and seriously considering moving into full-process GAPS. This was all at the beginning of this year, right before that I almost went in a totally different direction, Humira, and I’m really glad I didn’t.
      FWIW (and it’s definitely not medical advice!), I think the Crohn’s symptoms will be taken care of by your daughter following a diet and supplementation routine like Alan has laid out: it basically has gone away for me. The fistula is a whole different ballgame, in my experience, and it has helped me to look at them separately. Two things I cannot recommend strongly enough are to *not* go on Cipro or other fluoroquinolones — it almost seemed like it might close the fistula for me last year but left me with massive GI complications and serious joint pain; and to stay off any immunosuppresants like 6 MP which really just don’t do that much besides leave you open to infection (they are not going to heal the fistula!).
      I take LDN, but it hasn’t seemed to do much for me (sorry Alan). Diet has been the big deal, by a long shot. Vitamin D levels too. I am on the hunt for testimonials from GAPS followers that have had success healing fistulas — it seems to me that this diet could be the key but it’s tough to know.
      Anyway, good luck and I would love to stay in touch through the board, however loosely, to hear if you have any success with the fistula. I’m not a parent (33 yo, engaged, so taking notes vigorously on the whole parenthood thing), but anyway you can get her to see the big picture and not cheat on the diet would be *so* important. However, when I was a teenager, there’s no way I would have complied.
      -Graywhale

      • May 23, 2012 at 9:17 am

        I do agree that diet is more important than LDN and that LDN may not help everyone. But it is a low risk tool that makes sense for everyone to try.

      • Juliette
        June 6, 2012 at 1:44 pm

        Yes, I would be happy to stay in touch, Graywhale. Thanks for sharing your thoughts and experience. Very helpful. After 3 months on a GAPS/paleo/SCD style diet with probiotics and supplements, and three weeks on LDN, My daughter feels better, her labs look great (CRP still .5 vs 7.5 3 months ago) , she’s gained 4 pounds, and the abscess/fistula is healing nicely with a drainage seton in place. Unfortunately though, her GI told us that she wouldn’t be comfortable caring for her if she’s not on 6 MP since she doesn’t consider what we are currently doing as effective treatment and fears irreversible damage if it doesn’t get under control. What have you read or experienced that makes you say the 6 MP won’t heal the fistula? She did Rx rifaximin and we will start that today. I may just go with our naturopath who is completely willing to work with us without the crazy drugs, but it is a bit scary to go the unconventional route and deny meds, since the fistula issue is so complicated. I’m hoping that since she’s young, her body will be able to heal quickly but who knows! I agree it’s important to not think of any one thing as a magic bullet, but it sure is tempting to seek out that magic cure for crohn’s!

      • graywhale
        June 7, 2012 at 9:18 am

        Hi Juliette!
        Sounds like things are going well. It is so cool to hear that the fistula is healing nicely. I think you are probably right — she is young, there’s not any scar tissue yet, and it probably can heal with the seton. Everything you are doing sounds perfect.
        As far as the 6-MP goes (and I really make no claim to knowing what I’m talking about, so take it all with a grain of salt!), it sounds like you might as well keep her on it for now — the wagon seems to be driving along nicely and you don’t want the wheels to fall off over the one disagreement. But if/when the fistula heals and the doc says “see, 6 MP to the rescue!”, you’ll secretly know it was everything else (including the seton, of course) that you did that actually healed it. In my experience the 6 MP is not even that powerful (depending on the dose, I guess), so even though it can leave one more susceptible to other infections (which is a serious concern), it’s not going to screw up your health with unknown consequences like the biologics.
        I have been vigorously researching the fistula problems over the last month or two — I have the Crohn’s flares essentially under control it’s time to tackle that. I have no claim to any real knowledge, but it does seem to me that, though an offshoot of the Crohn’s, it really takes on a life of its own once it’s established. The “Crohns and MAP blog” link that Alan put up, while at odds with some of the intestinal permeability hypothesis that i definitely buy into, has been helpful in pointing out how bacteria may play a role in CD, especially fistulae. There is also a new forum on the robbwolf.com site where a Paleo-friendly GI doc is answering questions, and he says that other than the biologic drugs, “anti-MAP therapy” is the best thing he’s seen for healing fistulae. (he talks about rifaximin too — definitely check it out.) After my horrible experience with Cipro I am reluctant to go on more antibiotics, but the ones he recommends are in a different class so I might ultimately try them.
        Basically what I’m trying to say is that the framework of Leaky Gut –> Auto-immunity –> Crohns/Rheumatoid Arthritis/MS/whatever makes total sense to me and the hypothesis holds well. But then you throw in the fistula and I can’t see where to fit that in. It may start as a “molecular mimicry” attack, and then bacteria get in there that don’t want to leave. So then it is, essentially, something separate which demands different treatment methods. I dunno!

        I truly wish you and your daughter the best. Good luck and please keep us updated!

      • June 7, 2012 at 10:42 am

        It may very well be a “both” thing. Both leaky gut, and bacterial infection. If you have healthy gut flora and tight junctions, Bacteria (like MAP) my be a non issue. With leaky gut and poor gut flora, you get bacterial overgrowth that creates multiple problems. Maybe that’s why some antibiotics can be helpful to get things under control, yet they won’t fix the underlying problem.

      • Juliette
        June 7, 2012 at 3:59 pm

        The thing is that she is NOT taking the 6MP, and that is the concern from the MD’s perspective. Even though things are going fairly well, there is still some drainage of the fistula and I fear that it would close up and fill with puss if the drainage seton is removed at this point. If things get worse, they are going to push remicade. I would rather put her on 6MP now than go that route. The rifaximin isn’t covered by our insurance and costs $1500 for a month supply so that’s not going work just now! I’d rather invest in food and supplements. I do know bacteria is an issue- my daughter had IBS and severe eczema as a toddler and a stool analysis came back showing several pathogenic bacterias present in high amounts as well as less than optimal amount of bifidobacteria even though she was still breastfeeding. A Paleo/SCD/BED/Weston Price diet with the addition of probiotics, CLO and Glutamine for two years did the trick and cleared all symptoms, but we got off track by resuming gluten consumption and now have to pay the price with this perianal crohn’s diagnosis, heal her intestines and build up good flora.

      • June 7, 2012 at 9:10 pm

        If interested, you can get rifaximin online for $.30 per 200mg pill. At 400mg per day, that would be $18 per month. wwww.alldaychemist.com

      • Juliette
        June 8, 2012 at 12:22 pm

        i forgot about the online option! thanks, and yes i am interested- will buy some today. you are a never ending resource!

  17. May 23, 2012 at 12:31 pm

    Yes, taking LDN is a no-brainer, I definitely agree. Super-cheap, no downside, might really help. All I am saying is that in my personal experience it has not helped, *yet*. I absolutely plan to continue taking it.

    The only reason I think it’s important to even mention this kind of thing is that before I started on the LDN I was convinced by all the pro-LDN crowd/websites that I was going to see dramatic results. (Of course, thats my fault — fool me once….). So when Juliette says “I feel confident this will aid the tissue healing…” I just want to put a voice in there that says, “hope with all your might that it does help, but don’t get over-confident”

  18. Gary
    August 12, 2012 at 11:33 pm

    I’ve been looking up some information on krill oil, was wondering what brand anyone is using and why. I was going to purchase some now (made from Neptune) off amazon, but am hearing about red whale krill oil and will have little time to do research for at least a couple weeks. Thanks for responses!

  19. Gary
    August 16, 2012 at 6:43 pm

    I’ve decided on a krill oil brand and also started looking into curcumin and boswellia. The BCM95 version of curcumin I found has rice flour in it. Are there any products that do not have the rice flour (are scd safe?). I’ve had the same issue with boswellia. Thank you for the help! (I can find some products that do not contain rice flour, but I am not seeing that they are the promoted products for proper absorption.)

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