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The Core Strategy

My approach to dealing with autoimmune disease in general and Crohn’s specifically is very eclectic. There is no cure but there certainly are safe, effective and affordable strategies that will let most people live normal lives.

Wordle: crohn's dad
There is finally science that explains what is going on with these diseases. The core problem is in the functioning of the gut lining or leaky-gut where the gut lining is actually leaking undigested proteins into the bloodstream, kicking off an inflammatory response. The two key factors that create leaky-gut are the direct action of prolamines/gluten/lectins in grains & legumes, as well as the omega 6 fats in seed/grain oils — along with dysbiosis in the gut, where complex carbohydrates & fructans are poorly digested, ferment, and feed the growth of pathogenic bacteria.

leaky-gut-inflammation-cycle

So now we have a mess that needs to be unraveled. Here is the basic strategy:

  • Stop eating the foods that cause leaky-gut
  • Stop eating the foods that feed pathogenic bacteria
  • Supplement to kill pathogenic bacteria and replenish good bacteria
  • Supplement to reduce inflammation and heal leaky-gut

And here are the tactics:

  • Diet – The most important component – 75% – is diet.  Eliminate all processed sugar, grains, legumes, and dairy. Although grains are the enemy, it’s also important to reduce high omega 6 fats and fructose. So what do you eat? Meats (hopefully grass-fed/pastured animals and wild caught seafood), Vegetables, Fruits and Nuts (and Tubers after some healing). Great diets for this include: SCD or Specific Carbohydrate Diet, GAPS or Gut and Psychology Syndrome Diet, and Paleo. Both SCD and GAPS are specifically designed for autoimmune disease and offer an intro phase and process for healing. Paleo doesn’t offer a process, but I’m partial to their evlolutionary biology approach to the world.  Here is a PDF that outlines a solid approach. It combines the best of SCD/GAP with its low FODMAP strategy, all within a Paleo foundation.
  • LDN – For many, diet is enough, but for most diet needs to be combined with LDN and key supplements.The only drug that makes sense to me is LDN or Low Dose Naltrexone. LDN is safe, effective and affordable. Naltrexone has been around for over 30 years and is FDA approved, but LDN for Crohn’s would need to be prescribed “off-label” or purchased directly from an online pharmacy. LDN works by tricking your body into producing 3 times the amount of endorphins it normally would. Endorphins perform a critical function that is profoundly important for the proper functioning of the immune system. The result is reduced inflammation, and demonstrated healing of the gut lining. LDN works best when combined with a gluten, soy, casein restricted diet because these foods actually compete for the opioid receptors that LDN works on.
  • Supplements– Athough you can go crazy with supplements, there are a core that have been shown to be effective. Few of them do much without the foundation of the right diet, but when combined, they can be very helpful:

D3 Make sure your blood levels are between 60 – 80. For most, this might require supplementing with 5,000 or 10,000 iu’s per day. There are clinical trials going on right now at Penn State for vitamin D and Crohn’s. Here is a great resource for vitamin D.

B12 Shots are critical for anyone with a damaged ileum. They are great for dealing with fatigue.

Boswellia & Curcumin are both great, natural anti inflammatories with small clinical trials that show that they are as effective as mesalamine without any of the side effects. Take boswellia in 5Loxin form and take curcumin in BCM-95 form.

Probiotics – There are some great probiotics that can help crowd out pathogenic bacteria and re-populate the gut with beneficial bacteria. One of the best ways is to ferment your own yogurt or vegetables. Or you can buy probiotics. The 3 strains that have some clinical trials to back them are S. Boulardii, VSL#3 and Mutaflor. S. Boulardii is affordable, available and works great for diarrhea, candida and c. diff. I’m partial to Mutaflor, but it is expensive, and unavailable in the US.

Leaky-Gut Healers – There are a number of interesting supplements that either aid digestion or directly help with the healing of the gut lining: GAPS bone broth or gelatinBetaine hcl with pepsin has multiple benefits with GERD, CRP/homocysteine, and killing pathogenic bacteria. L. Glutamine,  Zinc Carnosine, Colostrum/Proline Rich Polypeptides (PRP) and Coconut Oil.

There are other strategies, but this is a great start. Follow the links, do some research. Share this with your doctor. And get started. You can get your life back. Let me know how it goes!

Alan

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  1. September 21, 2011 at 9:35 pm

    Nice write up. I’m surprised you didn’t mention acidophilus when discussing probiotics. My ND has me on a pure acidophilus supplement for the time being.

    • September 22, 2011 at 12:51 am

      There are many good probiotics, and if acidophilus is working for you, that’s great. I’m just not aware of any real studies on the effectiveness of acidophilus for crohns or uc.

  2. Marsha P.
    September 22, 2011 at 3:08 am

    AWESOME post. It is so HELPFULL for everyone but especially the newbies. We are so scared and not really understanding anything. This explains Crohn’s and the basic steps to take. It helps so much when someone understands what you are going through and takes the time to listen and give advice. Much appreciated. Keep writing!!!!

  3. Paul
    October 8, 2011 at 12:44 am

    Thanks so much deciding to write this blog. Your approach is a wonderful synthesis of cutting edge research and practical knowledge that is usually overlooked by main stream medical practitioners. Based on your advice, our son has changed the way he is dealing with Crohn’s. We are grateful for your guidance.

    • October 8, 2011 at 12:54 am

      Paul, I’m really glad your son is turning things around. Please do keep me posted.

  4. October 12, 2011 at 4:38 am

    Great story Alan!!

  5. n.
    October 23, 2011 at 8:32 am

    Hello!

    This is great information–some of which I’ve never read before regarding Crohn’s and UC. I’m taking Pentasa for my Crohn’s. It took a lot of arm twisting because I am strongly anti-pharmaceutical industry. The bit about Boswellia & Curcumin is very interesting. I will read more on this.

    I have L-Glutamine here. I don’t take it very often and am confused about the best time of day to take it. I’ve googled it but I just get threads dedicated to body building. Do you have any suggestions of when to take the L-Glutamine supplements?

    • October 29, 2011 at 1:39 pm

      The latest studies show that pentasa (mesalamine) really does very little for crohns – no more than placebo. Google Jini Patel about l. glutamine. I recall she suggests 1 teaspoon 2x per day on an empty stomach. Start out with 1/4 teaspoon and work your way up.

  6. October 28, 2011 at 12:06 pm

    Great summary Alan, one of the things I notice with my clients is that they correctly identify a food as a major culprit, such as gluten, lectin-containing foods, etc. But then, they leave it at 80% finished. There can still be underlying shifts in gut microbiota (intestinal candida, pathogenic bacteria such as H. pylori) that remain. Sometimes the joy of relief lasts only a few weeks until they are frustrated with remaining symptoms “despite doing everything right”…sometimes they lose faith in the approach and go back to eating the foods that may be causing the leaky gut and inflammation in the first place.

    • October 29, 2011 at 2:01 pm

      I agree. That is exactly why my approach is eclectic. This is why combining strategies – diet + supplements + LDN is so important. Most people can’t get to 100 with diet alone and they get very frustrated when they get close, but fail…and they give up.

  7. Deb S.
    December 2, 2011 at 10:10 pm

    Thank you, thank you! I’ve been looking for validation and there is a proactive way of dealing with this disease. I have been gluten free for 7 years, precipitated by how painfully bloated I got when I ate gluten. I wasn’t officially diagnosed until three weeks ago after a colonoscopy came back as indeterminate colitis. I have had two flare ups this year; each lasting over two months of daily diarrhea.

    I’ve been on Asacol and Budesonide for almost 30 days. The diarrhea is gone, but I feel like I’ve blown up. Pants I bought two weeks ago no longer fit. I’ve lost my waistline and every night when I come home from work all I want to do is go to bed. I’ve looked up side effects of these drugs and don’t see weight gain as one. Maybe it’s just the inflammation from the disease. It is so depressing. I’ve always been tall and slim and now I feel shapeless. It sounds so vain, but it’s a reality for me.

    I also take vitamin supplements and fish oil daily.

    I typically eat very healthy and practically live at Whole Foods. I know the answer before even asking, but am probably more just looking for support. I drink a Diet Coke every day and today I missed lunch due to work demands and ended up having a Diet Coke, almonds, and a banana. I am in such horrible pain tonight. My gut is on fire.

    I’m lost. My next doctor’s appointment is a week from Monday.

    • December 8, 2011 at 11:59 am

      Deb, Sorry you are having so much trouble. Budesonide is a steroid and can cause significant weight gain and a bunch of other negative side effects. That, and recent studies show that it really doesn’t help much – http://summaries.cochrane.org/CD007698/oral-budesonide-for-the-treatment-of-ulcerative-colitis “At present, there is no evidence to recommend the clinical use of oral budesonide for the induction of remission in active ulcerative colitis. Mesalamine is superior to budesonide for the treatment of active ulcerative colitis.”

      Its great that you are gluten free, but most need more than that. I encourage you to dive into one of these diets – SCD, GAPS or Paleo – in a serious way. It will make a difference. From there you can make adjustments with some of the supplements, and of course, LDN which will work for UC as well as Crohn’s.

      Keep me posted.

      Best,

      Alan

    • capulet111
      May 4, 2012 at 6:02 pm

      Hi Deb, My heart goes out to you. I have had CD for at least 30 years. I have not needed a gastroenterologist for the past 18 years and have been inflammation free due to a major paradigm change in my approach to healing my gut and body after suffering terrible gastrointestinal pain and wasting for the first 19 years along with a few surgeries. Currently, I do a low gluten diet but not completely Gluten free (because I cheat) so I admire your accomplishment with your own diet shift and it has encouraged me to get back to my re-evaluation of my food choices. Thank you for that.

      In the end, we are our own best advocate. Keep speaking up and out about the problems, confusions, complexities, questions, and need for help. Remember to learn cumulatively, write things down to help make sorting things out easier, like everything you consumed in a day and the after effects both bad and good. It’s an education as hard as it is, and it takes time. Try asking open ended questions everywhere you go. Walk into a co-op/alternative market like Debra’s Natural Gourmet in West Concord, MA and ask the folks there for options and suggestions, like what does one do with that bone marrow on the shelf anyway.( Do you know they now have Bone Marrow on the menu at The Russell House Tavern in Harvard Square, Cambridge, MA? It caused me to nearly fall off my chair!)

      Keep up the good work, and feel free to let me know how you are doing. I’m going out now to buy some gluten free bread thanks to you and maybe even bone marrow thanks to Alan and Debra’s Natural Gourmet market.

      Take care …

      ~Cap

      (Cap…my apologies for the edits)

  8. December 19, 2011 at 5:19 pm

    Have you learned anything about redundant colon? I have that on top of chrohns and it leads to constipation more than diarrhea.

    • December 19, 2011 at 7:47 pm

      I guess I learn something new every day. Assuming that it just means you have a longer colon than normal, You should do fine with an autoimmune/paleo strategy with the addition of magnesium citrate to keep things flowing!

  9. December 21, 2011 at 9:22 pm

    I regard something really interesting about your website so I saved to fav.

  10. December 21, 2011 at 11:04 pm

    Lovely website! I am loving it!! Will be back later to read some more. I am bookmarking your feeds also

  11. Terri
    December 29, 2011 at 6:57 pm

    I’d like to ask what you think about taking VSL#3 for Ulcerative Colitis following the SCD diet – been on it for 9 months but still not symptom-free. I have a lot of VSL#3 in my fridge – insurance paid for it – but didn’t use it because of the bifida that goes against the SCD legal rules. Trying to decide if I should just go for it and not worry about the bifida being ‘illegal’? What would you advise? Thanks!

    • December 29, 2011 at 7:34 pm

      I’m certainly not an expert on VSL, but I have heard mixed things. Some have problems with it and others swear by it. If I had it in the fridge and had UC, I would try it. Start off slow and build gradually. Let me know if it helps.

  12. January 7, 2012 at 3:52 am

    I don’t ordinarily comment but I gotta say regards for the post on this one :D.

  13. January 16, 2012 at 3:21 am

    I am interested in LDN

    There are friends on the SCD support group that are using it with success.
    I was diagnosed with UC in July of 07

    My recent colonoscopy shows a stricture and I have a fissure
    My stricture is in the sigmoid colon and I am going for a laprosopic resection in 2 weeks.

    The doctor thinks my symptoms will go away and I can come off the Asacol since the rest of the colon looks good.

    Been following SCD since 8/07 and I do not go off it.

    The advanced foods have not bothered me until this last colonoscopy 3 weeks ago.

    • January 16, 2012 at 9:51 am

      Combining LDN and SCD ought to be standard practice. Are you thinking of giving it a chance before surgery? Or starting after? Either way, I would be adding thE GAPS bone broth regimen, l. Glutamine and zinc carnosine to try to heal the stricture. Good luck!

      • January 16, 2012 at 10:08 am

        Thank you for your response on the LDN.
        My surgery is Jan 30 – 2 weeks away.

        Will ask to add the LDN right after.
        Do you think I should ask now?
        The surgeon thinks I can come off the asacol, and be symptom free after removing the stricture. She feels it is what is causing all my current problems.
        Says the rest of the colon looks healthy. A far cry from the first time when it looked like raw hamburger.

        Where do I find the GAPS diet and broth(marrow) recipe.
        Can you send a link?

        I have a friend who will cook for me while I am in the hospital and the Dr. OKed my bringing my own food, I jokingly said I was bringing a my own George Forman grill.
        I am bringing a blender and a cooler.

        Can you speak more about the zinc carnosine and l glutamine?
        I have been on prednisone this year.

        Grammy gave me Elaine’s bone marrow broth recipe.

        I will be on IV for several days and then liquids , which in hospital speak means boulion cube and jello. My friend has agreed to cook for me instead.

        I certainly appreciate all of your input.
        It is wonderful to have the support of everyone in the Crohns and Colitis and SCD communities.

        This disease is challenging, and people like you and Grammy ease the journey.
        Thanks Again
        Patricia

      • January 16, 2012 at 10:25 am

        You could start LDN right away, but you would have to go off it a day or 2 before surgery to make sure the pain meds they will give you before/after surgery will work.

        http://www.gaps.me is a great source for the GAPS bone broth. And a post op regimen of bone broth and real gelatin is a great idea. Both l. Glutamine (an amino acid) and zinc carnosine (google pepzin gi)have been shown to heal the gut lining. I link to studies on both in my core strategy post. If you like the taste of licorice, also add DGL. And ther is no reason not to start all that right away.

        Good luck, and keep us posted!

        Alan

  14. Vocsa
    February 14, 2012 at 7:02 pm

    Well, I’ve crohn’s and I must admit I agree with most of what you’ve written.
    All the best!

  15. Danell Brice
    March 9, 2012 at 1:14 pm

    my son was diagnosed with crohn’s 3 years ago. They believe he has had the disease for for several years, as he had a fistuala as a teen that he did not tell me about. He is so advanced, they went straight to the big guns. As a registered nurse, I knew what we were in for. They gave him steroids, large doses…remicaide, he had a allergic reaction, 6mp…another allergic reaction. He has been on cimzia for over a year, developed another 2 fistulas and now they want to do surgery. I took him to the Mayo clinic in rochester, and they found he had c-diff. He was treated with antibiotics; however, they feel the cimzia is not working and want to do surgery. they tweeked his cimzia and want to add methotrexate. He is 27, married with no children. The doctor from the mayo told me yesterday that this may not help and chances are, he will still have to have surgery in the next 4 months because of the fistulas. We did find out, he had a Vitamin D deficiency, which no other doctors told us or did the test, and vit A deficiency. They gave him supplements. I am not a fan of methotrexate, or surgery and have spent many hours researching. My question is, did your daughter have fistulas? surgery? and how advanced was the crohn’s when you started this core plan? I want to thank you for your straightforward information. I have read through your website, visited many of your links and am still reading. thank you, from a crohn’s mom.

    • March 9, 2012 at 2:19 pm

      Danell, Sorry to hear about your son’s challenges. My daughter didn’t have fistula or surgery…and hopefully she never will. When she was diagnosed 8 years ago at age 10 she had a 10cm section of her terminal ileum that was severly narrowed/strictured, almost closed. We started with 1 course of prednisone, a strict SCD diet, and a eColi based probiotic similar to Mutaflor. We didn’t add D, LDN, Boswellia/Curcumin or B12 shots until she was 17 (no doctor suggested any of these either).

      Unfortunately I can’t tell you that if your son follows this program that he won’t still need surgery, but it’s worth a try. I would continue the cimzia and dive into a program over the next 4 months and re-evaluate then.

      You know if you’ve read my stuff and the links that – especially when you are sick – a strict diet is a critical foundation for everything else to work. I’d be doing the GAPS intro diet with plenty of Bone Broth right away – I am intrigued by Colostrum PRP spray as a more concentrated way to get critical proline to heal the gut lining. Adding LDN of course (let me know if you need help getting it), and if you are from minnesota, hopefully you have friends from Thunderbay or Winnipeg so you can order some mutaflor – its available in Canada. http://www.ncbi.nlm.nih.gov/pubmed/21317252

      For vitamin D & A deficiency look at the fermented cod liver oil blends http://www.greenpasture.org/public/Products/ButterCodLiverBlend/index.cfm interesting stuff but expensive.

      Does he still have c-diff? Look at lauracidin, s. boulardii, oil of oregano or even better – fecal bacteriotherapy – it works! http://www.ncbi.nlm.nih.gov/pubmed/22157239

      Please let me know how I can help.

      Alan

  16. Danell Brice
    March 9, 2012 at 2:21 pm

    did you start your daughter with the gaps diet? If so, did she do the introductory phase. which diet did you find she had the most response? combination, eliminating foods that brought on reactions?

    • March 9, 2012 at 2:33 pm

      I don’t think Dr. Natasha had invented GAPS yet. GAPS is essentially a more aggressive version of SCD. We did the intro phase of SCD (and my daughter did very well with it…she saw instant benefit in pain reduction but hated being on a strict diet), but the intro phase of GAPS is more restrictive – especially the casein/dairy free version (which I would suggest). GAPS is tough to follow in the beginning but likely more effective. Her addition of bone broth and fermented veggies is great, healing stuff.

  17. Danell Brice
    March 9, 2012 at 2:28 pm

    just saw your reply, thank you. they placed him on flagyl for a week and the c-diff is gone. The doctors will not be excited about the LDN, they want him on methotrexate. so if you can let me know where to get it, I would greatly appreciate it. I actually live in Louisiana, took him to rochester..hoping for something different. The mayo doctor placed him on Vit D supplement and Vitamin A. I am going to locate the mutaflor. What is the colostrum PRP spray?

    • March 9, 2012 at 2:55 pm

      Unfortunately you can’t get Mutaflor in the US (I thought you were on the Canadian border). For GAPS, you may want to consider a GAPS practitioner – Denise Candies Thibodaux, LA Tel: 985-637-2931, microbesfirst@gmail.com (she splits her time between LA…and Los Angeles)

      For LDN you will either have to ask Crystal Nason for an LDN prescribing doctor near you angelindisguiseldn@yahoo.com (she maintains a worldwide list) or just order naltrexone from http://www.alldaychemist.com (and dilute it yourself with distilled water…very cheap & easy)

      I still don’t know if the PRP spray is as wonderful as claimed…so don’t rely on it. But I learned about it from http://www.thedr.com its very common to see colostrum as a top-listed leaky gut healer and supporter for probiotics. The spray is the most concentrated form of proline (the healing stuff in bone-broth & gelatin) here is some research http://www.apsbiogroup.com/immulox/references.php and the cheapest place to get it is at http://www.vitacost.com they sell a branded version of the immulox PRP.

      Reports do show that methotrexate does help the biologics work better…but together they have big risks…and it often doesnt work.

      • Terri
        March 9, 2012 at 9:28 pm

        How do you get the right amount of LDN measured out after you dilute it? And what do you store it in? Do you refrigerate it? We are paying $70 a month to get it from a compounding pharmacy. (for 30 4.5mg capsules) I just looked on the alldaychemist website, and it’s only $16 for 10 50mg pills. That’s a huge savings. My 17 yr. old son has been taking it for ulcerative colitis. I would like to try it this way but want to make sure that I do it right.
        Thanks.

      • March 9, 2012 at 9:51 pm

        Its cheaper & more convenient if you can get your doctor to call the prescription into Skips Pharmacy in Boca. http://www.skipspharmacy.com we pay $63 for 90 4.5mg capsules…and Skip is a great advocate for LDN. Yes, doing it yourself is even cheaper but not as convenient and it does taste terrible. But not hard at all. Once you dilute it, naltrexone stays in suspension (I swish it around a but before dispensing anyway just to make sure). Store it in a small amber glass jar in the fridge. (But it can last days sitting out.) Glad to hear its working!

  18. Danell Brice
    March 9, 2012 at 3:30 pm

    with the dilution, i assume you get 50 mg tablets, how much distilled water? are you concerned about concentration levels? thank you for the sites and info…I am in school getting my nurse practitioner. when i received the call yesterday, I spent the rest of the day crying. this morning I found your site, I actually feel hopeful… It is wonderful what you are doing on this site, a busy surgeon, taking the time to help others… thank you, Alan

    • March 9, 2012 at 4:45 pm

      Most dissolve each 50mg tablet in 50ml of distilled water. Most stir/mix it before dispensing but the naltrexone does a great job of staying in suspension. He could start right in at 4.5mg/ml but most ramp up gradually to avoid the first week side effects that can be annoying. I should have noted that it may take 2 weeks to get Naltrexone from allday or http://www.unitedpharmacies.com

      Oh, and I’m not a surgeon…or a doctor. I’m just the father of a daughter with Crohn’s who spends way too much time researching this stuff (and I do try to back whatever I suggest with the research so you can make your own decision). I figured I may as well channel my personality flaw in a positive way.

  19. Danell Brice
    March 13, 2012 at 11:51 am

    do you know anything about LDN and cimizia, if it is safe to take together?

    • March 13, 2012 at 1:26 pm

      Danell, There is no reason you can’t do LDN with Cimzia. If you are already taking Cimzia, you can start LDN. Hopefully after a few months on both you’ll be able to drop Cimzia. You’ll increase the chances that you can do that if you combine LDN with diet. Hope that helps!

  20. Charlene
    March 14, 2012 at 12:56 am

    Just found your blog and appreciate you sharing your research. My daughter, 22, also a math major – is recovering from rheumatoid arthritis using a Weston A. Price diet and no
    drugs. She was bedridden with severe pain last year for 7 months and her inflammation and pain has subsided to the point that she is back at the university full-time. In reading your posts, I see that our approach to helping our daughters is somewhat similar. We have eliminated sugar, refined grains, and industrial seed oils. My daughter drinks 1/2 gallon raw milk/day, raw egg yolks, and raw liver – about 4 oz. per week. She eats generous amounts of raw butter and cream, some cooked grass-fed meats, and wild caught seafood. I believe the enzymes in raw animal proteins are critical to healing. Has your daughter tried raw animal foods? So many nutrients/vitamins are heat-denatured, including A, D, K2, B12. We found supplements to be an inferior source of nutrition and try to get all our nutrients from food sources. The Weston A. Price Foundation website has an excellent search engine for identifying which foods provide various nutrients with well-researched articles. Glad that your daughter is healing and hope she continues to regain her health and strength.

    • March 14, 2012 at 5:44 am

      I too am a fan of WAP and agree that it is best to get most nutrients from food. We do have access to raw milk, but we would have to make our own raw butter (I’d love to try that…maybe a summer project). Unfortunately my daughter will not touch anything milk related so we never did SCD yogurt. She does love sushi though!

  21. Marsha P.
    March 14, 2012 at 10:32 am

    This is probably a silly question but I am wondering about the Bacillus Coagulaus (DuraFlora). Is that related to Bifidum? I am trying to figure that out because all those probiotics are illegal according to Elaine.
    Also I am interested in the colostrum, would they both be beneficial or just one? I take
    VD3, Vit C, GI Acidophilus, Freeda’s Multi, L glutamine (as needed) 5loxin (will start that soon) and Doctors Best Pepsin Zinc and Carnitine.

    Thanks for all your research

    MJP

    • March 14, 2012 at 11:15 am

      Hi Marsha, B. Coagulans is not related to bifidum. Colostrum and B. Coagulans do different things. You can certainly take all of them together…but you do have to draw the line somewhere, otherwise you’ll go crazy and broke!

  22. Danell Brice
    March 19, 2012 at 10:14 pm

    we started my son on the scd diet and the broth. This is day 6, 2 days ago he started colostrum and yesterday he started the probiotics. He is complaining of itching and irritation at the site where he has a fistula. He said it started yesterday, the same day he started the probiotics. He is also taking doxycyline, which he takes 2-3 times a year for a couple of weeks due to prostate infection. Have you ever heard of anyone having a reaction to the probiotics or colostrum?

  23. Doreen
    March 24, 2012 at 3:27 am

    Have you heard about the possible healing/nutritional benefits of raw camel milk? It is supposed to be much better than cow and goat milk. It can now be purchased in the US.
    My son is on LDN for Crohns and is doing pretty well but admits his energy levels are not very good. He is 21…away at college and has not made any big dietary changes yet. He is a bit underweight and the diets you suggest seem like weight loss would result for an active person.
    I appreciate your site.

    • March 24, 2012 at 10:16 am

      I’ve heard good things about camel milk but I have a hard time believing that it is some magic cure. First I’d have him on regular B12 shots (if he’s not done this, he’ll be amazed) and make sure he’s getting 8 hours of sleep. Does he know his vitamin D levels? And even if he can’t do a strict diet, eliminating wheat & gluten grains would be a step in the right direction. He should be able to maintain a healthy weight eating more healthy fats – meat, eggs, butter etc. He could even start lifting weights and doing post workout protein shakes from proteinfactory.com where you can make your own without the junk.

  24. Danell Brice
    April 10, 2012 at 10:25 am

    alan, thank you for your reply. my son has been strictly following the scd diet including broths, he has stopped the cimzia and is taking vit d, vit a ( blood work showed deficiency), colostrum, circumin and probiotics now. I am happy to say that the fistulas that were open to the outside of his body are closed and healing, one we cant even visualize. we have not added the ldn yet. I am giving him b12 injections, which give him alot of energy for a few days ( some nights difficulty sleeping), but after about a week he becomes lethargic. He has difficulty eating fruits or juicing them because he has had a prostate infection for about a year or more, ( continuous antibiotics) His urologist just informed him this is healed for the first time. the juices, fruit juices, tend to cause him pain in that area again. Today he had to leave work because he was so tired. He never leaves work. I am afraid he is not getting enough carbs, he eats mostly organic meat and vegetables. I am also concerned about his caloric intake, he has lost a large amount of weight, though he is within his range for height. any thoughts or suggestions? Also, could you please give me the name of the compounding pharmacy in florida for ldn. i would like to speak with their pharmacist re: the ldn. thank you so much for you replies and help!

    • April 10, 2012 at 8:07 pm

      The pharmacist to go to is Skips in Boca – http://www.skipspharmacy.com Let me know if you need more info on LDN.

      Sounds like cutting back on juices is a good idea. As for calories, he should make sure he gets plenty of fat from grass fed meat, marrow bones, organ meat/liver (that’s where the healing CLA is) and adding grass fed butter/ghee and coconut oil is also a good idea. And of cours, egg yolks. In terms of B12, he may need shots more often, once a week may not be crazy.

  25. June 7, 2012 at 1:07 am

    Hi! Thanks for this site! I am meeting with my GI on Friday and feel empowered with this info.

    Do you have any thoughts on the Good Belly brand of proboscis? I need a nondairy one and this one seems to work for me.

    I ordered Elaine’s book. A little worried about how the husband and kids will adjust to the diet and not having as many “treats” 🙂

    • June 7, 2012 at 10:49 am

      Looks like good belly probiotics would not be SCD legal with the added sugar & oats. As for treats…there are plenty, they just won’t include sugar & grains. Look to the paleo & scd world for desert recipes – http://www.easypaleo.com/tag/paleo-dessert/ (I know cocoa is scd illegal but…)

  26. Matt
    June 10, 2012 at 4:04 pm

    Hi there. Firstly thanks for making this site. It will and has provided help for many around the world. I was diagnosed with crohns around 14 years ago. It’s currently controlled with azathiaprine. Recently I started juicing loads of fruit and vege and making that my main source of food. The idea here was to get the nutrients from fresh fruit/vege without excessive amounts of insoluble fibre that can irritate (the juicing machine removes the skin/seeds etc). I’ve also cut out all refined sugars and processed food.
    Two questions;
    1) do you have an opinion on juicing for crohns healing?
    2) in this post you talk about limiting levels of fructose. Are you referring to the natural sugar found in fruit, or the refined version that can be found in the likes of fructose corn syrup?

    Thanks in advance!
    Matt, Liverpool UK

    • June 10, 2012 at 4:38 pm

      Hi Matt, and thanks for the kind words. While juicing raw fruits and veggies has some benefits – lots of antioxidants and less offensive fiber, there are some issues with oxalates and veggies, and fructose malabsorption with the fruits when juicing. Frankly there isn’t much difference between drinking HFCS drinks and orange juice from a fructose perspective.

      If you are cutting out grains, legumes and dairy you’ve made the biggest positive changes you can make. Fill your meals with healthy animal fats/proteins/bone broth, well cooked veggies or fermented veggies, and more limited, low fructose fruit like berries and you’ll do better than juicing.

      • Matt
        June 17, 2012 at 8:38 am

        Thanks for the reply. I’ve cut out grains and dairy and there is a massive benefit here. Instead of tea/coffee I’m drinking peppermint tea with a little manuka honey and that seems to be helping also. Instead of cooking veggies or fermenting them, I’m consuming them in juice form. I’ve read that cooking food destroys nutrition and enzyme count. I understand that cooking vege makes it easier to digest, but for anybody reading this I’d recommend buying a juicer and juicing your vegies/leafy greens to ensure optimal nutrition without the insoluble fibre (the juicer removes it). It’s working for me anyway. Peace

  27. June 17, 2012 at 1:20 am

    Hi Crohnsdad:)

    What is your opinion on ginger as an anti-inflammatory?
    Do you think it is on level with curcumin or maybe pentasa in strength?

    • June 17, 2012 at 8:21 am

      Curcumin is in the ginger family, but I don’t know much about how good it is. I wouldn’t be surprised if curcumin was better than pentasa for crohn’s because pentasa has been shown to be no more effective than placebo in multiple large studies. I’d say give it a try! Here are some interesting studies: http://www.ncbi.nlm.nih.gov/pubmed/22387540, http://www.ncbi.nlm.nih.gov/pubmed/15659827, http://www.ncbi.nlm.nih.gov/pubmed/22593941

    • Matt
      June 17, 2012 at 8:33 am

      Mathias, I’ve started eating ginger root lately. Since I started daily juicing a 4cm to 5cm chunk of ginger with an apple, I noticed an improvement within a matter of 48 hours. It might burn whilst drinking it, but it has a very alkaline-forming effect on the body after digestion. Hope this helps.

      • June 17, 2012 at 8:36 am

        Good to know that its working. But I’d bet its the anti-inflammatory aspect that’s helping.

  28. Matt
    June 17, 2012 at 8:40 am

    crohnsdad :
    Good to know that its working. But I’d bet its the anti-inflammatory aspect that’s helping.

    Yes mate I agree. Keep up the blog, I’ll become a regular from now 🙂 Oh and happy UK Fathers Day!!

  29. June 17, 2012 at 11:42 pm

    I actually meant how ginger compares turmeric (since you already recommend it). I somehow always mix up turmeric and curcumin.

    Thanks for the studies!

    • June 18, 2012 at 8:51 am

      There seems to be far more information about curcumin, so at this point I think it makes more sense to focus on curcumin as a supplement, and ginger as a food but I’m open to keep learning!

  30. July 11, 2012 at 7:26 am

    Hello there, You’ve done an incredible job. I’ll definitely digg it and personally recommend to my friends. I’m confident they will be benefited from this website.

  31. Danell Brice
    August 17, 2012 at 6:42 pm

    Just wanted to post an update on my son. On valentine’s day we were seeing the number 1 gastroenterologist in the US and some say the world. He and his associate recommended surgery, more and worse medications. after much research and help from this site, he started the gaps diet and the supplements here. I, a RN, pulled him off all medications except the LDN at 4.5 mg and the supplements. Through his determination and discipline, he adhered to the diet. He had 3 fistulas that had tunneled to the outside of his body, one which had to be debrided and would not heal. All of these areas are now healed, he is doing wonderfully on the diet. He is now able to tolerate cashew butter. The only problem is he has difficulty maintaining or gaining weight. Any suggestions? and thank you, your site has been invaluable…

  32. danell brice
    September 11, 2012 at 9:58 am

    you will be so missed. thank you for your support and work. your daughter will be in safe hands with us.

  33. Cassie
    August 22, 2013 at 12:59 pm

    I am so thankful to have read this! I am in the middle of a bad flare that has been going on for 9 months without ANY relief. I’m doing remicade treatments and on all sorts of medicine, when I asked my doctor about diet he’s response was ” no, nutrition doesn’t really have anything to do with it. The prednisone should help” I was a little blown away and thought that didn’t seem right . I was just diagnosed in January and so desperate to find something that works!

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