two questions--on ldn and on kale

[bevfromwa]

I asked my PCP about LDN and he was unfamiliar with anything but the 50 mg use/dose. MC is definitely foreign to him, he encouraged me to try the "new" GI doc in town. The only other one fits Tex's description of a hard head. I don't want to be negative, but checked on the new one and he has been in practice 41 years, doubt that his head will be less hard. Don't know where he is from, educated in NY, maybe he plans to eventually retire here. Anyway, will see him in a couple of weeks so will ask about LDN.

My question is does this work on inflammation so that the gut would be healed after a while on it and it could be discontinued, or is it a longer term thing?

I've been on the elimination diet basically for nearly 4 months, it's a 2 step forward 1 back deal. I'm rotating baked fish, lamb & turkey, root veggies plus others well cooked, buckwheat, millet, quinoa, fruit such as bananas, applesauce, pears. When I started out I was eating way too many things (as helpfully pointed out to me here) so have cut back drastically. I really wonder if LDN might give the healing a boost. I tested 2+ on chicken, beef, pork, in that order, and 3+ on tuna which the Enterolab nurse said also meant salmon.

The other question is about kale, I really would like to use it because of it's boost to eye health, I'm at risk for Macular Degeneration. I tried cooking kale about an hour, then sauteeing it with onions & garlic, but reacted to that. Now I wonder if putting it in a smoothie would work--either cut stems out and blend the heck out of it, or maybe cooking it and then putting it in a smoothie. Also, hear chia seeds are nutritious, high in calcium, etc. Wonder if that's too much fiber or if blending into a smoothie would cut the fiber.

Thanks very much for any help, Beverly

[JLH]

Monique has had the most success with LDN, I believe. http://www.perskyfarms.com/phpBB2/viewt ... hlight=ldn

Are you on Facebook? There are many LDN sites including our own secret one. IBD and LDN is one and Got Endorphins is another. Also, The LDN Research Trust site has mods that are very helpful.

[tex]

The other question is about kale, I really would like to use it because of it's boost to eye health, I'm at risk for Macular Degeneration. I tried cooking kale about an hour, then sauteeing it with onions & garlic, but reacted to that.

Maybe you reacted to the onion or garlic. I couldn't tolerate onions (and I was afraid to try garlic), until after I was in remission. If I recall correctly, Jean has posted a good recipe for baked kale chips, somewhere here.

Also, do you take lutein? My drusen was diagnosed over 30 years ago, but outside of a slight loss of visual sharpness when lighting is poor (IOW, I have to wear reading glasses if I want to read normal size or small print at night, or anytime when the light is not bright enough), my vision is still surprisingly good. This is unexpected, because I had to wear reading glasses under those lighting conditions over 30 years ago. When I was diagnosed, I was told I should expect slow, steady deterioration. It doesn't seem to have happened, at least not to any great extent. But I have been taking 20 to 40 mg of lutein each morning, at least 5 days each week, ever since then. That adds up to a big pile of lutein, but I credit it with preserving my vision. Since it usually comes in bottles of 30, I estimate that I've used over 350 bottles of the stuff over the years.

I haven't even had the cataract problems that my doctors insisted I would develop because of several eye injuries that I have incurred (in both eyes) over the years. that required the removal of tiny steel chips from my lenses, as a result of grinding accidents. The injuries have caused cataracts to form, but so far they don't seem to be causing any significant vision problems. I haven't been to see an opthalmologist for an eye exam in roughly 10 years, because at the last exam, he told me to come back when the cataracts have grown to where they are causing a vision problem. I'm sure he assumed that would probably happen within a year or so, but so far, it hasn't happened.

I'm not using LDN, but from everything I read about user experiences, I get the impression that it's not likely to resolve MC symptoms, if MC is the only issue a patient has. However, it seems to work quite well for various other AI diseases. It's my opinion that in some cases, some of those other AI issues may be preventing some of us from achieving remission, and in a situation such as that, LDN can also resolve MC, as a secondary effect (this is assuming that the proper diet changes have been made). So if you have other active AI issues, LDN might be worth a try.

Tex

[bevfromwa]

thanks for your response, Joan. I have never joined FB, although I have a lot of friends and relatives who use it regularly. Too bad, sounds like there might be some good info. Maybe I'm wrong, but my perception is that there is a loss of privacy involved, but probably it would be usage dependent.

And thank you Tex for the reply. I have never seemed to have a problem with onions and garlic, so assumed it was the high fiber.

I've been taking 20 mg Lutein for over 2 years now, and last fall my check up revealed that the Drusen hadn't progressed (yea!) The Lutein supplement, Vitacost label, also has 840 mcg of zeaxanthin, and I was taking an additional 4 mg of that also, until I discovered that it's in a base or rice oil Rice was another 2+ on the Enterolab tests, in fact the first 2 columns of "no" and "some" reactivity were blank, the 11 foods were 40 units.

I'm not aware of any AI diseases, just osteoarthritis which might have yielded slightly to giving up white potatoes (another 2+ gem) and all night shades as recommended. I surely didn't think I'd ever be able to accomplish THAT, but have. Oh, and osteopina last time I was tested several years ago. My pcp is pushing another test and 5 years of Fosamax, you can imagine how enthusiastic I am about that.

Thanks again, Beverly

[tex]

Beverly,

My osteoarthritis seems to have slowly faded away after I removed casein from my diet (even though my digestive system could tolerate it).

I agree — I would be very uneasy about taking any of the bisphosphonates. In addition to being known triggers for MC, they have some very serious adverse side effects that make them more than a little iatrogenic. I would maintain good blood levels of magnesium, vitamin D, and vitamin K2, and let my body take care of the osteopenia. Most of us overlook K2, but I've recently started taking it, because my diet is very deficient in K2, and K2 is very important not only for proper blood clotting, but also for getting the calcium in our blood into our bones. Here's a link to a reference:

What You Need to Know About Vitamin K2, D and Calcium

As you are apparently aware, the bisphosphonates don't just stop the loss of bone, they also stop all growth of new bone tissue, resulting in bones that just become more brittle, as more and more of the tissue dies, as time passes. The reason that bone density increases with the use of bisphosphonates is because the bone tends to fossilize and petrify after it is dead. So it looks good on the density tests, but as the bone slowly dies, the increasing brittleness increases the odds of eventual fractures. And because the drugs prevent dead bone tissue from being removed, minor dental issues can become major problems for bisphosphonate users. That's why the decision to limit the use of them to 5 years was made, because if a patient exceeds that, the damage begins to become a major problem. But why would anyone want to prevent all new bone growth for 5 years? That doesn't make any sense to me. I'm amazed that doctors can sleep at night, but maybe they don't even realize what all the drugs they prescribe are doing to their patients.

Severe osteoporosis can be treated with strontium ranelate, but unfortunately it shows an increased risk of myocardial infarction, so it probably shouldn't be used to treat osteopenia. The problem is, no drug is without side effect risk, so there are no free lunches.

You're most welcome.

Tex

[UkuleleLady]

If you have a juicer, You could try juicing the kale, or make kale chips which are wonderful. I juice kale with green apple, and a squirt of lime juice, it's very good. The Dino kale works better than curly for both IMO.

[JFR]

I make kale chips. It's easy. I chop up the kale, add either olive oil or coconut oil, 1-2 TBS depending on how much kale I am making, a little bit of sea salt. I lay these out on parchment paper in a low baking pan and put them in the oven at 350 for 10-15 minutes, You have to watch them and take them out when they are crispy. I ate them a lot with ground lamb at the beginning of my journey. I still eat them.

Jean

[Leah]

The Kale may have too much fiber. After three years, kale is still too abrasive for me, but I can eat cooked swiss chard and collard greens. I tend to chop these greens and put them in homemade soup.

I am currently trying LDN. I originally ordered the .5mg drops from Israel without a prescription so I could adjust the dosage myself. My doctors all didn't know much about the use of LDN but I eventually talked my gastro into writing a script for a compounding pharmacy recently! I sent him some articles and emphasized the low dose of it ( compared to 50 mg.). I started taking it after i had to start taking Tamoxifen for breast cancer recurrence. I think that drug has made my gut very different and painful, so I thought I'd try the LDN to see if it would take care of the problem. Not sure yet. I will be going up to a 1.5 mg. dose soon, but I'm starting to think I might have to stop taking the Tamoxifen to see if indeed, this is my problem. I do, however, have two other AI diseases and LDN is really about helping your body "accept itself" better.

Good luck
Leah

[Zizzle]

Many people react to onions because they are a FODMAP food. That said, I don't do great with cooked kale. I do better with kale chips (baked in a 250 oven for 30 mins) or kale in smoothies.

I've been on LDN since March. At first it seemed to help the MC. It has certainly minimized the severity of my food intolerance reactions. But I still have mild daily D, probably because I've been battling yeast overgrowth with meds and supplements, and I have a history if GI infections abroad. I'm certain I have dysbiosis or some pathogen in the GI tract. But LDN promptly put a stop to my autoimmune disease and improved my energy and mood. I noticed improvement with weeks and reached remission by 12 weeks. But any amount of gluten exposure makes my rash and hip pains want to flare again, so I must always be vigilant, even with LDN.

[Chemgirl]

The other question is about kale, I really would like to use it because of it's boost to eye health, I'm at risk for Macular Degeneration. I tried cooking kale about an hour, then sauteeing it with onions & garlic, but reacted to that. Now I wonder if putting it in a smoothie would work--either cut stems out and blend the heck out of it, or maybe cooking it and then putting it in a smoothie. Also, hear chia seeds are nutritious, high in calcium, etc. Wonder if that's too much fiber or if blending into a smoothie would cut the fiber.

Nube and longtime lurker here. I was diagnosed with CC in September 2013 and have since modified my diet using advice from this website. I've been doing great for the last 6 months or so and can eat most vegetables. That said, kale (and arugula) doesn't work for me. I just don't digest it and I feel horrible for days. I can eat baby kale. My local grocery store has been stocking it for a few months and I noticed it at Costco this weekend. Its more tender than mature kale, similar to spinach, and I have been eating it regularly with no ill effects.

Another was of getting nutrients from leafy greens without the all of the cellulose is to sprout. For some reason, even fairly early on, I could manage sprouts. Easy to grow at home so you know what you're getting.

Obviously everyone is different, but this has worked for me.

[tex]

Hi,

Welcome to the discussion board. You make a very good point, because as plants grow (and age) the fiber in their stems and leaves increases not only in quantity, but more importantly, in coarseness. And that almost surely makes them much more abrasive to our inflamed intestines.

Again, welcome aboard, and thank you for posting and sharing your experiences and your insight.

Tex

[Leah]

ZIZZLE, what dose are you taking?

[Zizzle]

ZIZZLE, what dose are you taking?

I'm taking 4.5 mg of LDN before bed. I skip at least one dose per week, sometimes 2, which makes me think I may be able to drop to 3.5 or 3 after a year or 2. But clearly I benefited from the higher dose to get my AI disease under control.