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Posted 1/16/2009 8:27 PM (GMT 0)

Just wanted to write to everyone about my current situation:

I began using LDN (Low-Dose Naltrexone) in mid-December for Crohn's.  I had exhausted pretty much all other options (Remicade, Cimzia, Prednisone, etc.) with little relief and I was not ready to make the leap to trying Tysabri (brain infections scare me).  So I found a doctor in my state who had experience with LDN (not a GI Doc) and started on it.  I started at 1.5 mg for 10 days, then to 3 mg for 10 days, and now have been at 4.5 mg for the past week or so.  I really didn't start seeing any major changes until this week.  Coincidentally, I also began taking a digestive enzyme this week.  I'm not sure if it's the LDN, the enzyme, or the combination of both, but I'm definitely feeling MUCH better (fewer bathroom trips, less urgency, less of the big D, less mucus, more energy, etc.).  The digestive enzyme that I'm taking is called "Digest Gold".  It's not cheap, but I'm thinking it's definitely helping. 

As far as a Gluten-Free diet, the same doctor that prescribed LDN to me also suggested that I get tested for Gluten Intolerance (Celiac's Disease).  There's a lab in Texas that will test your stool for certain antibodies that show an intolerance to Gluten.  They also do some genetic testing to see if you have the genes that predispose you to the disease.  Interestingly, my stool test came back negative for the antibodies, but the genetic test showed that I had two copies of a gene that predisposes people to gluten sensitivity, which meant the likelihood of me having it was high.  My doc spoke with one of the lab technicians there and they think that my antibodies came back as a false negative due to immunosuppression (I'm still on 10 mg of Prednisone).  So, I've decided to try a gluten-free diet to see if it helps me.

It's been a very educating couple months as far as my disease goes.  I recommend that anyone with Crohn's look into some of these things.  I found that my GI doctor can only take me so far, and I had to start thinking "outside the box" in order to take control of the situation.  I think it's paying off!

Feel free to contact me with any questions.

Posted 1/16/2009 10:26 PM (GMT 0)
It's nice to hear your story Pete, it really is.

I effectively re-started LDN and a gluten free diet on January 1st. The last two days I have started the digestive enzymes (the same brand as you, even!). Right now, I'm really bad off, but everything I read says it has to get worse before it gets better. Something to do with shedding the mucus lining and healing the gut wall... I just hope that it starts to get better soon!

I hope your improvements continue! ANd thanks for sharing your story.
Posted 1/17/2009 5:00 AM (GMT 0)
cool. good news petey. i havent tried LDN but i got a lot better once i included digestive enzymes and went on an almost gluten free diet (basically i just drastically reduced my grain intake, only eating sprouted grains and lower gluten content grains, and eliminated processed and refined foods).
Posted 1/17/2009 5:58 PM (GMT 0)
Thank you for your suggestions, PeteT, I am going to order the digestives enzymes. Do you happen to know what kind of digestive enzymes that are in "Digest Gold"?

Patientspiders, try to avoid those food that you feel have been your triggers before, I would also avoid sugar and yeast. If you buy or make your own, homemade gluten free bread, try to avoid yeast, use baking powder and baking soda instead. I have read that several people with IBD can't eat bread made with yeast and also have to avoid other nutrition containing yeast.

As I am sure you know by now that I have been using LDN for more than 1 year with great success. But it's always room for getting better. Anyway, it's often hard work during some weeks, many of us have needed to taper off of pain medicines containing narcotics, before using LDN. And it's necessary to make it without those pain meds for at least one week or two prior LDN. Luckily, there are pain meds without narcotics one could use during those weeks. Another option is often to use prednisone prior to LDN, and avoid pain pills. Then tapering off of prednisone the same way as usual, and combine 10 mg of prednisone with 4.5 mg of LDN for a while, untill the diarrhea is all gone. You could also use 8 or 5 mg pred for a long while, untill the guts are ok. LDN should be the only medicine in the end. For those having Crohns Colitis with too much diarrhea, Asacol could be combined with LDN. I know persons that have done this with great success.

You don't need to gradually increase your LDN dose. Just start at 4.5 mg at once, no necessity to start with 1.5 mg and gradually increase. Prof. Jill Smith at Penn State University don't do it at all. Her patients starts at 4.5 mg. Period. :-)
Posted 1/17/2009 9:13 PM (GMT 0)
I can't speak to the LDN, but I do believe that a gluten free (or more accurately, gluten-lite- I cheat sometimes) diet has helped me.  According to the tests I don't have Celiac, but based on my body's reaction to eliminating gluten I do think I have a sensitivity.  It's been a slow process.  I wasn't automatically "fixed" when I changed my diet.  I also don't get automatically sick when I eat something with gluten in it, which is why agree that I don't have Celiac.  My colonoscopy last month came back clear- no current inflammation- and the pill cam showed some mild gastritis but no small bowel involvement.  I don't believe the results would have been anywhere near that good before I started changing my diet, so I'm sticking with it.  Going gluten free can be frustrating.  But I've discovered a few excellent recipes that I might not have tried otherwise.  And cooking has become a bit of a hobby now, instead of another chore I have to do.  When I'm finished here I'm heading into the kitchen to start my first ever batch of homemade yogurt.  The SCD-ites are constantly singing it's praises, so I thought I'd give it a go.  Wish me luck!
Posted 1/18/2009 10:17 PM (GMT 0)
I am also much like bektold. After I went off Remicade I noticed I would have awful pain when I ate any bread. I cut all wheat out of my diet and was able to go medicine free until my Humira was approved several months later. I am not celiac, as I can eat fried wheat (occasionally may have some calamari or something like that...) and can tolerate some soups and dressings with gluten in them. However, I just stray from any actual wheat products, as well as corn syrup. Even if I get to the point where I can tolerate wheat again, I feel like the restricted diet really makes me eat healthfully, as I cannot just pick up any old food or snack, and need to be meticulous about what I put in my body. I am so much healthier and more aware now. I also live 2 blocks from a Whole Foods and so I have a constant supply of Glutino products. I feel this will serve me even better in the long run, perhaps more so than the actual medicines.
Posted 1/18/2009 11:15 PM (GMT 0)
gluten free gets easier all the time, and I am still thrilled at my results. I made great gf pancakes today and am lovin' bob's red mill bread mix. the great thing is, it doesn't hurt anyone to not eat gluten, so trying to give it up can be a great choice.

Posted 1/19/2009 2:36 AM (GMT 0)

I haven't tried Bob's Red Mill, but Whole Foods has a store brand gf sandwich bread mix that is excellent.  Much better than the first bread mix I tried. (Pamela's, I think.)  They also have a tasty gf corn bread mix, but that can cause me problems sometimes.  I don't think I digest the corn meal very well.

In my opinion, it is totally worth it to bake my own gf bread.  My Whole Foods sells frozen gf bread for $6.99 a loaf.  $6.99!  For bread!  I've never tried it, but there's no way it's tastier than the loaf I just pulled out of my bread machine.  And the mix is a lot cheaper than $6.99 a box.  It would probably be even less expensive to make my bread from scratch, but I'm not quite there yet.  I don't have a lot of baking experience, and all of that is with the assistance of a bread machine.  With cooking I don't mind throwing stuff together to see what I get.  But baking is all about chemistry.  If you don't do it right you'll end up with a mess.

I heard recently that the whey (liquid yellowish stuff) drained off of homemade yogurt is very useful in gf baking.  Gluten is a protein, and whey is protein, so I guess it helps to add structure that the gf flours lack.  Does anyone know anything about this or have suggestions on where I should look for more info? 

Posted 1/19/2009 6:46 AM (GMT 0)
I haven't read anything about whey. as for baking, I am a fabulous bread baker, but not so for GF. everything that is true with wheat flour doesn't work without. I have tried several scratch recipes, bought a zillion flours, and none have been worth eating. quick breads work fine, but yeast breads are really hard! I don't have a bread machine, but the mix works fine with a mixer.
Posted 1/19/2009 8:31 AM (GMT 0)
The only way I seem to survive and be HAPPY on this gluten-free diet is if I abandon all the things I "used" to make. I have to quit trying to mimic the things I love, because well - lets face it - bread is never going to be bread the way my taste buds expect it to be now, pizza crust will never be quite right, etc. I'm having much better luck inventing entirely new meals... several of which I have come to crave just as much as my old "stand-by's". I also love glutenfreegirl.com. As my energy slowly increases, so does my desire to experiment in the kitchen.

Pete, or Beesting... if you're still around... did you notice your crohn's symptoms get worse before they got better with the LDN? I'm starting to worry enough that I am considering the small dose of prednisone that Bee mentioned. I'm losing an awful lot of mucus/blood...and my nights are riddled with trips to the lou. I can make it a little longer like this, but not too much... I'm having a heck of a time staying hydrated. Any advice on self-medicating with pred, or should I just suck it up and roll with it for another week or two?
Posted 1/19/2009 3:26 PM (GMT 0)
spiders,

Yes, my symptoms were pretty bad (much the same as what you're experiencing) until this week, which is about 2 weeks into the 4.5 mg dose. But, I'm still not sure if it's the LDN or the addition of the digestive enzymes that did the trick. I would recommend that you try the enzyme and see if it helps. I started feeling better about 2 days after beginning them. I'm currently still on 10 mg of prednisone. I have been on that dose since I began the LDN at 1.5 mg about a month and a half ago. If I continue to feel better in the next week or so, I'm going to start tapering down...hopefully!

To BeeSting....here's some info on Digest Gold, including the types of enzymes included in it: http://www.enzymedica.com/products/Digest_Gold

Just click on the "Nutrition Information" tab in the middle of the page.
Posted 1/19/2009 3:32 PM (GMT 0)

bektold said...
I heard recently that the whey (liquid yellowish stuff) drained off of homemade yogurt is very useful in gf baking. Gluten is a protein, and whey is protein, so I guess it helps to add structure that the gf flours lack. Does anyone know anything about this or have suggestions on where I should look for more info?

Bektold, YES!!! I've been reading about this since Christmas from an amazing book (CrazyHarry told me about it) called "Nourishing Traditions: The Cookbook That Challenges Politically Correct Nutrition and the Diet Dictocrats", by Sally Fallon. I actually made my very first lacto-fermented vegetable--sauerkraut--with whey from my yogurt a couple weeks ago! It turned out great!

You will not be disappointed if you buy this book! It has soooooo much valuable information in it! It's way more than just a cookbook. There are so many long lost techniques of food preparation/fermentation/preservation which our ancestors used... They were beneficial for multiple reasons, and this book explains it all!

Also, I remember reading a great article on this website explaining why current testing for Celiac Disease is inadequate, or not necessarily 100% accurate. (I'm sorry, I don't know exactly which article it was, but the site is a great one for anyone who wishes to read a bit about gluten sensitivity.) The gist of the article as I recall was that even if you test negative for Celiac, you can be "gluten sensitive." The only way to discover if you are is to remove gluten from your diet and see how you feel. Here's the link:

http://www.celiac.com/

PeteT, welcome to the forum! smilewinkgrin
Posted 1/19/2009 3:43 PM (GMT 0)
EMom,

My doctor said the same thing about the Celiac blood tests, but thought that the test I had done was much more accurate. It's a combination of testing your stool and some genetic testing. If anyone is interested, here is the website for the lab.

https://www.enterolab.com/StaticPages/Frame_TestInfo.htm

It's not cheap! I would recommend the "Gluten Sensitivity Stool and Gene Panel Complete". That covers everything.
Posted 1/19/2009 4:15 PM (GMT 0)
this is an article I found very helpful:
http://www.celiac.com/articles/759/1/Early-Diagnosis-of-Gluten-Sensitivity-Before-the-Villi-are-Gone-by-By-Kenneth-Fine-MD/Page1.html

I agree about new foods, patient, I gave up trying to have anything bread-like for a long time. now after a year, I am enjoying "breadiness" in its new form.

and pete, I had a similar test to entrolab's from my naturopath and it was sent to a lab in seattle. if anyone is looking for a good forum like hw dealing with gluten, (where this whole issue of testing is discussed a lot) go to

http://forums.glutenfree.com/
Posted 1/19/2009 4:25 PM (GMT 0)
yogaprof,

Coincidentally, Dr. Kenneth Fine is the Medical Director of Enterolab.

https://www.enterolab.com/StaticPages/Frame_Cirrculum.htm
Posted 1/19/2009 5:17 PM (GMT 0)
Yoga, yes! That's the article! Interesting that he's the Enterolab guru! Thanks for the forum link, too!

Thanks, Pete, for the info on the lab. I am definitely going to look into this! It would be great to know beyond a shadow of a doubt if gluten and other food sensitivities are an issue for my son.
Posted 1/20/2009 1:44 AM (GMT 0)
you will even find me, still as yogaprof, at that forum. very nice people there. I am glad it was the article...sometimes I luck out!
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