LDN use for MC.. final report (I hope)

[Linda in BC]

I have been using LDN for month now and I thought I should sum up my experiences with it.


*May 18 Started at 1.5 mg of LDN at night just before bed.
*Saw improvement of motility within first day or two. Food stayed longer in gut, no urgency to go, but still had D. Frequency down to between 1-3 movements per day (big improvement) Other effects: Poor sleep first night, good to excellent sleep all nights after that. BP went down. Mood improved. Rapid heartbeat on some mornings. No other side effects.
*I stopped taking thyroid meds for about a week because I thought my thyroid was starting to work. This was a mistake in my case. The LDN .org website cautions that it may cause your thyroid to kick in and says you should monitor this, but other sources say there is no clinical proof that LDN ever affects thyroid functioning. I believe the latter to be true. It was only the rapid heartbeat from increased endorphins that I mistook for hyperthyroidism. It has taken me a couple of weeks to get my thyroid functioning/ meds and all back up to normal.

*Consistency improved slightly over the course of next 18 days. Frequency stayed way down.

*May 20- June 1 Started experimenting with no gluten/ no soy

*Was close to gluten/ soy free for about 3-4 days May 31-June 4 (have been casein free for 7 years )

*Started Boswellia 150 mg , first dose night of June 4. Took 300 mg (150 x 2) after that.

*June 5th had first normal bowel movement.

*June 6 ate a bit of wheat that day. Softer stool, gas and discomfort, but no D.

*Normal June 7th and 8th still wheat, casein and soy free.

*June 9 had soy ( moccachino) Very bad D, with pain, generally felt bad.

*June 10 - slowly D. is decreasing, stool firmer, no pain.
*June 16- got results of Entero lab tests- said I was gluten intolerant , but not to soy or casein. I have been GF since then, but still reacting to something (vegetables?) Once I figure out secondary intolerances, I am quite sure I will be fine.

So in summary, I believe that LDN was useful at the beginning of the healing process to settle my gut down (perhaps it helps with the stress factor?) but it alone could not bring remission to my MC. Mind you, I did not ever increase my dose from the absolute minimum and I will not, as I don't like taking drugs much and usually need only a small amount of them. I don't believe I would get anymore improvement with a larger dose. I concur with most people on this board that diet is the best way to control the symptoms of MC. I will likely continue the LDN for another month or so until I am stabilized and then stop it.

I hope this information helps someone.
Linda

[Stanz]

Hi Linda,

Thank you for sharing this. Your experience with this sounds similar to mine with L-Glutamine. I take half the original dosage now and am seeing my ND on Wed. to see if I can drop it entirely and just continue with the probiotics. It's all just a big experiment. I've been on the L-G since mid Nov. and can definitely tell if I forget a day or two, but so far haven't had any flares that lasted even a full day.

I hadn't seen that you'd gotten your results from Enterolab and will look to see if you posted them, I just finished 9 straight days on a job late Sat. nite, so I've been out of the loop here. It is a relief to know that gluten is a problem, isn't it?

Connie

[Linda in BC]

Yes, it is a big relief to have that confirmed. The part I find problematic is the news that I showed no soy or casein intolerances.. after 6 or 7 years of denying myself dairy, as you might imagine, I am having trouble believing this wonderful news!!! I have been trying a bit of it (and both cringing and rejoicing as I do) and I am still getting D., however am not sure if it is the dairy or maybe just too many veggies, hidden gluten or what... Time will tell...
Linda

[tex]

As I posted previously, if you avoided casein for at least several months before sending a sample, then you couldn't have been generating any antibodies for the sample. The test merely confirmed that you had done a good job of avoiding casein. We only produce antibodies if we are ingesting an allergen. The tests at Enterolab cannot detect antibodies that are not being produced.

After you eat casein for a few months, send them another sample for a casein test, and you'll see what I mean. If it turns out to be negative, then you are indeed not casein sensitive. I hope that it will be negative, but I would be surprised if that happens, (and I'm pretty sure that you would be, also).

Tex

[Linda in BC]

I understand, Tex, and I will probably be able to tell quite easily without sending in a sample ... :-(
Linda

[Stanz]

Well, you can at least have hope, Linda, that you won't have problems with dairy, as I have no problems as long as I take Lactaid before I eat ice cream, which has 4x as much lactose as milk. I have no problems with cheese, even w/o Lactaid. You are very early on giving up G. Give it some time before you add dairy and then just see what happens. I've known I've been Lactose intolerant for years and don't ever drink milk. I rarely drink soy milk or eat soy as from my research too much soy isn't good for anyone. I can also eat yogurt w/no problem, but even the tiniest amt. of gluten is felt almost immediately. We're all different and I know what works for me isn't any kind of standard you can go by despite that we are both double DQB1's, as apparently most of us have multiple intolerances. It's a crap shoot.

[wonderwoman]

Connie, I'm curious, how many mg of L-glutamine were you taking a day.

[Stanz]

Charlotte,

I don't know how to quantify what I've been taking, but I started out on 2 rounded tsp/day 3X/Day and to be completely honest I always just pretty much did a rounded TBSP twice a day. So, I did that for about 2 months and since then have only done 1 rounded Tbsp./day and I took it all at once with my probiotics. I have had half days where I've had loose bowels, but it has been somewhat miraculous considering I'd been through 2 1/2 years of nonstop D and this stopped it w/in 3 wks. and it has been consistent since then.

Maybe I'm lucky, I don't know, but this is the truth of how fast it worked for me. And just to address the stress issue: I left for LA in early Dec. to be with my daughter who was due to give birth in Mid Dec and she had been through hell all year, had a miscarriage in Feb. got pregnant again in April, had fallen, had gone into early labor at 28 wks, had had to have surgery to replace her KNUCKLE on her ring finger, so I'm showing up in LA expecting the worst, having just been dx in mid Oct and exploring my options til mid Nov. before I started L-G. and probiotics

So, in all reality I'd been on L-G and probiotics for only 3 wks before I entered that atmosphere where I was cooking, stocking the freezer, building furniture, painting, and had a huge list of other stuff to do, so it wasn't like I was sitting there just waiting for my grandson to be born and I felt pretty good.

[tex]

Connie,

I didn't see any mention of the GF diet in that brief outline of your treatment plan. I thought that you adopted the GF diet a few months before you started the L-Glutamine.

Tex

[Stanz]

Tex,

I started a GF diet the first of August in '09, on the urging of my ND and my daughter, who had been GF for about 10 months then. I had my colonoscopy in mid Oct., which is when I found this site, and my test results from Enterolab came back in early Dec. while I was in LA. So, I'd been GF for 2 1/2 mos. before my colonoscopy and about 4 mos. before I took my samples for Enterolab. I started the L-G less than 3 wks before I went to LA and was pretty well D free by then.

What I do for a living is very stressful. It's a very gratifying job and people are appreciative, but it is hard. The days are long and when everyone else goes home I go shopping and then go home and wash dishes and prep and restock, etc. for the next day. I've done all this while sick and it's been hard and it's been scary, but I've done it. Frankly, I'm pretty happy with the way this turned out for me.

We are all stronger than we think we are. I've been doing this for 22 years, I still start out every job in a panic that I will fail, forget something important, that I'll oversleep my alarm.

[tex]

Connie,

I understand that your work is extremely stressful - that's not at issue, and I assure you that I do have the highest respect for anyone willing to tackle that type of work - my hat's off to you. The issue is L-Glutamine, as a proposed treatment for MC. If you're promoting L-Glutamine as a stress reducing agent, I don't have a problem with that, and I don't have a problem with you, (or anyone else), promoting L-Glutamine as a supplement to help preserve muscle tissue in the gut, or anywhere else in the body. What does concern me is that you were following a proven treatment program, (namely, the gluten-free diet), for at least several months before you achieved remission, and yet you attribute your remission to the use of an unproven, (as an MC treatment), amino acid supplement, rather than the diet. Why? That defies logic.

I'm certainly not trying to say that L-Glutamine is without merit, because there is no question that it has anti-catabolic qualities. IOW, it helps to prevent muscle tissue breakdown, which might be a benefit for someone with MC, who is having malabsorption issues, which could cause the body to suffer nutrient depletion to the point that it might find itself in a state where it might seem necessary to break down muscle tissue, to use as a source of nutrients and/or energy. Presumably, L-Glutamine might help to retard any such muscle tissue breakdown, thus helping to preserve the integrity of the cellular architecture of the intestines. I can see where it might possibly be a beneficial supplement, to enhance healing of the gut. However, if you are gluten-sensitive, and you were faithfully following the GF diet for at least several months before remission occurred, then your remission became a reality because of the GF diet, not because of an amino acid supplement. At least that's the obvious conclusion.

The reality is, if you had not been following the GF diet, all the L-Glutamine in the world would not have brought remission, because without the diet, L-Glutamine is not going to stop an autoimmune reaction. I'm open to the line of reasoning that as a supplement to the diet, L-Glutamine might speed up remission somewhat, (or it might not), but without the GF diet, it is extremely unlikely to bring remission from the symptoms of MC.

I'm pretty sure you realize that, but when I read your posts about it, I always get the impression that you are promoting L-Glutamine as a stand-alone treatment for MC, which is very misleading, especially to newbies, because it is not a stand-alone treatment, (at least that has not been demonstrated, to date).

Tex

[Stanz]

Tex,

My Enterolab results are posted here already, but I’ll repost my scores on the first 3:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA: 32 Units - (Normal range is less than 10)

Fecal Anti-tissue Transglutaminase IgA: 21 Units – (Normal range is less than 10)

Quantitative Microscopic Fecal Fat Score: Less than 300 Units – (Normal range is less than 300) - so I was not experiencing malabsorption then.

As I best recall, I mailed in my samples in mid Nov., about the same time that I started with the L-G, so I’d been off G for 3 1/2 months then. I was still highly reacting to G, as you can see by my scores above.

I'm certainly not trying to say that L-Glutamine is without merit, because there is no question that it has anti-catabolic qualities. IOW, it helps to prevent muscle tissue breakdown, which might be a benefit for someone with MC, who is having malabsorption issues, which could cause the body to suffer nutrient depletion to the point that it might find itself in a state where it might seem necessary to break down muscle tissue, to use as a source of nutrients and/or energy.

I was within normal range for malabsorption, but I still had non-stop D until about 2 1/2 wks of taking L-G and Probiotics, at which time I went to LA for a month during which my DD had her baby. I was clearly stressed during all that time, we were pretty worried about my DD and the baby and during all this time I’m still working and have a plane ticket to fly at a moments notice if I needed to. Stressed – yes! I’m not now and never have promoted L-G as a stress reducer.

There is plenty of information available on it being used successfully to treat MC, or I wouldn’t have chosen to use it in the first place. As we all know, MC isn't a disease that there is a cure for, no matter what method we use, it is a treatment - not a cure. I chose L-G after a great deal of research that I passed on to my ND and then he researched it as well. Admittedly most of what I read about it didn’t say WHY or HOW it worked, but it worked for many people I read about and it was safe and I didn’t want to take meds that could potentially cause other problems and make it even more difficult for me to work.

So, maybe the difference and the reason it worked for me is that I do not seem to have other food intolerances besides G and being lactose intolerant, I don’t know. All I know is that it worked for me and if I miss more than a day now, my stool definitely gets looser, but I have never had more than about a half day of D since early Dec. and can count the # of episodes of D that even remotely resemble the painful, explosive, watery, uncontrollable episodes I’d had before on my fingers. I saw my ND yesterday and asked him if he thought I should stop taking it and he feels I should continue to taper down and see what happens.

The reality is, if you had not been following the GF diet, all the L-Glutamine in the world would not have brought remission, because without the diet, L-Glutamine is not going to stop an autoimmune reaction. I'm open to the line of reasoning that as a supplement to the diet, L-Glutamine might speed up remission somewhat, (or it might not), but without the GF diet, it is extremely unlikely to bring remission from the symptoms of MC.

Totally agree with you here, but as been pointed out often, it usually takes a lot longer than 3 months being GF before symptoms disappear - even for people who are on Entocort. So, again, maybe it is not having multiple sensitivities that makes the difference.

I'm sorry if you and others feel I have been heavy handed in promoting L-G, but how else can I interpret my results and why wouldn't I want to encourage others to look into it? I'm sorry if you and others feel that my recommending this as a possible treatment translates into criticism for those who have chosen another method or medication. It is certainly not what I feel or intended to imply. As I said, I have friends whose health has been damaged by long term use of steroids and other meds. I don't take any drug without research, I don't trust doctors period, and justifiably so.

[tex]

Quantitative Microscopic Fecal Fat Score: Less than 300 Units – (Normal range is less than 300) - so I was not experiencing malabsorption then.

A "conventional" fecal fat test requires careful measurements of fat intake, and fat output, over a 3-day period, so obviously, the Enterolab test makes some pretty substantial assumptions - namely, that fat intake of the test subject is "normal", (that also implies that the subject is a one-size-fits-all configuration - IOW, it implies that larger people and smaller people will tend to eat the same amount of fat, as the "normal" person that the test is designed around. In the real world, this means that the test will tend to show that larger people are more likely to have a fat malabsorption problem, and smaller people will be more likely to show that they do not have a fat malabsorption problem, simply because of the way that their fat intake varies from what is assumed to be "normal"). Aside from these issues, for many/most of us, that is an unrealistic assumption in the first place, due to the fact that we limit our fat intake, because of the simple fact that we realize that we're unable to digest it properly, since it usually ends up floating in the toilet. That means that by reducing our fat intake, we skew the test result to show that we don't have a malabsorption problem. Therefore, the fecal fat test results have to be taken with a grain of salt, because they depend heavily on what we are eating prior to taking the sample. Obviously, a smaller person, who has reduced her fat intake, (because she has severe diarrhea, which is made worse by eating fat), will be in double jeopardy with that test, and the odds are very high that she will show a negative test result. Right? Despite the test results, most of us here have malabsorption issues, else most of us wouldn't be so short on so many vitamins, (and amino acids - if you weren't short of L-Glutamine, for example, it probably wouldn't provide much benefit).

You're trying to read too much into your test result numbers. It's tempting to do that, but there's no basis for any validity to that practice. The actual numbers on your anti-gliadin and anti-TTG test results mean very little, other than the fact that they are positive results. Those numbers will remain in the same basic range for over a year after you stop ingesting gluten, (probably with minimal change), and they will still be in the positive side of the range for up to two years after you stop ingesting gluten. Therefore, their numeric level, taken several months after beginning the diet, is moot - those results are probably very close to what they would have been the day you started the diet, and they are probably not very far from what they will be on your one-year anniversary of being GF.

I'm sorry if you and others feel I have been heavy handed in promoting L-G, but how else can I interpret my results and why wouldn't I want to encourage others to look into it? I'm sorry if you and others feel that my recommending this as a possible treatment translates into criticism for those who have chosen another method or medication.

I apologize, Connie, because clearly, I'm not getting my point across. You're still misinterpreting what I'm trying to say. I have absolutely nothing against you "promoting" any treatment that you feel has been of benefit to you, that might be a benefit for others. That's why we're all here - it's the primary reason for the existence of this board. The problem is that in so many of your posts where you advocate using L-Glutamine, you fail to mention that the GF diet is a primary part of your treatment plan. When you tell a newbie, (or any other member, for that matter), how effective a product was for you, but you fail to mention that the GF diet was a vital part of your treatment plan, that's very misleading, and it can certainly confuse virtually anyone.

IOW, unless you are prepared to demonstrate that L-Glutamine will bring remission from the symptoms of MC, without any other diet changes, then please include a mention of the diet, when you are describing your treatment program. That's all I'm asking - I just want the whole truth, rather than just parts of it. You and I both know what you are saying, but someone new to the board needs complete information, if they are going to reach the correct conclusion.

You and I seem to share a lot of common characteristics. We're both so passionate about some of this stuff that it's easy for us to get crosswise. I hope we're still friends, because I don't mean to be a PITA. (I added a vodoo smiley to the emoticon selections, in case you want to punish me a little). I just worry about sending misleading information to newbies, who already have a tough enough life as it is, without having to deal with unnecessary confusion, caused by something we said, or failed to say.

Hugs,

Tex

[Stanz]

Tex,

We both agree that this site needs to be sensitive to newbies and I have corrected my “signature” to reflect that I am GF and Genetically GS.

I surely don’t mean to mislead or confuse any newbies here, Tex, but I found this site after my dx/w/MC, as anyone else would do. I came here in Oct. after my dx/w/MC while I was researching online and clicked on the link to this site.

Any newbie that shows up here is on that same path and is responsible to make their own choices for treatment. If newbies aren’t researching and simply accept their GI Dr’s. RX for drugs for their disease after they are dx, they will never find this place. I read what I saw here and chose my path of healing because of what I found here and in many other places. I love the community here, and I hope we are open to dissent on ideas. Most people have chosen Entocort for treatment, and many feel it was their answer, but many people have also had problems with it for different reasons. And again, maybe this is due to multiple intolerances, etc.

I’ve been researching my various ailments since I’ve had computer access and in reality that wasn’t much before 2003. Prior to that I researched by library, as I've had one ailment or another all my life. I’ve documented my history on here before, so if anyone cares to read what I’ve written about my medical history they can.

GF died of intestinal obstruction, Mom of stomach cancer, brother of colon cancer, nephew had a bowel resection, both his daughters have Crohns, all my living siblings are arthritic, niece is schizophrenic - and these are just the obvious connections to GS.

Tex, you clearly are not the norm for most here. Few of us have had to endure what you have in the very losses because of this disease, and few of us have the base of knowledge you have after the years that you have spent researching.

Yeah we’re both passionate and I hope we are still friends and I’m sorry I write such long posts, I type fast.

Connie

[Gloria]

I hesitate to enter into this discussion, but I think I've recently given a misleading impression:

it usually takes a lot longer than 3 months being GF before symptoms disappear - even for people who are on Entocort.

It does take longer than 3 months for symptoms to disappear for most people who are using diet alone to achieve remission. However, the rare people who are only gluten intolerant can see improvement within days.

For almost everyone who takes Entocort, symptoms disappear within 2-4 weeks, again according to the number of intolerances they discover. That also was true for me. Once I relapsed, it always took just a week or less of an increased Entocort dosage for my symptoms to improve. My recent experience has been completely different and is the only time in three years that it's taken three months to see an improvement in my symptoms. I think that something else is going on this time. It is possible that I have a mast cell problem and need to follow new dietary restrictions - who knows?

Almost everyone here is helped very quickly by Entocort, as I used to be. I'd hate to give the impression that people need to wait up to three months to see an improvement. Fortunately, that's not the case.

Gloria