Re: i could use some help for crohns.

[Guest guest]

Hi, . I have Crohn's Disease, and I have been on LDN since January 19th. I

started feeling better within the first few days, and my symptoms went away

basically within the first week. I am still doing really well on LDN...and I am

SO happy with this drug. Hang in there. We all respond to drug treatments

differently. I was to the point the surgeon from Cleveland Clinic phoned me on

January 3rd suggesting removing my large colon, rectum and anus with a permanent

ileostomy. I am soooo glad I researched and suggested LDN to try first!!!

Amy

[low dose naltrexone] i could use some help for crohns.

ive been on ldn for three weeks. When will it kick in? I have minor pain. i have

gone big time on antiimlamatory diet. Five dr's want me on humira and i just

can't see it. I am 53. Been doing this since 19.

[Guest guest]

Hang in there - I`m sure it will get better with time. Humira is a horrible drug so avoid it at all costs. For some people it helps straight away and others it takes time but I`m sure it will help. You`ve had crohns for many years so give LDN a good long chance to see the difference.

good luckBev

low dose naltrexone From: johnwtomerlin@...Date: Sun, 17 Apr 2011 00:32:14 +0000Subject: [low dose naltrexone] i could use some help for crohns.

ive been on ldn for three weeks. When will it kick in? I have minor pain. i have gone big time on antiimlamatory diet. Five dr's want me on humira and i just can't see it. I am 53. Been doing this since 19.

[Guest guest]

For those with Crohn's, try going on a gluten free diet also for a period of time. In some cases that makes a huge difference. If you think gluten may be a problem it is wisest to get a blood test for it first. The antibody levels can diminish in two weeks. The tests through your MD are not 100% accurate, but it does give you a baseline. Even if your tests are negative, try going on a 100% gluten free diet to see if you notice a difference. There is a higher degree of celiac disease for people with Crohn's compared to the regular population. !% of the population are intolerant of wheat, barley and rye and 97% have not been diagnosed. There is a lot of undiagnosed cases out there. I attended a lecture on Friday by the lead CD doc from Mayo and he stated the above. If you are having problems find a Gastroenterologist who is knowledgeable on regarding celiac disease.

[Guest guest]

I have Crohn's Disease (since 1993 at age 27) and just started LDN on Mar 31. I have just started to feel much better over the past 2 days, so keep taking it and hang in there. Incidentally, as someone mentioned, diet can have a great impact. However for me it wasn't gluten but soy. I can eat soybean oil and lecithin, but no soy protein, soy flour, or (obviously) straight soybeans. I was told that's because there is no protein in the oil/lecithin for the body to react to but it is present in everything else soy. I also watch my fat and dairy intake. Everything in moderation. Good luck to you!

 

Niki

On Sat, Apr 16, 2011 at 8:32 PM, johnwtomerlin <johnwtomerlin@...> wrote:

 

ive been on ldn for three weeks. When will it kick in? I have minor pain. i have gone big time on antiimlamatory diet. Five dr's want me on humira and i just can't see it. I am 53. Been doing this since 19.

-- R. Gagnon87 Westbrook Rd.RR WhatelySouth Deerfield MA 01373413-325-7448

[Guest guest]

Hi,You may find that your symptoms gradually subsides, or LDN may start working after 3 months of use. It's said that it often takes this time to adjust the immune system. Great that your anti-inflammatory diet is helping you. You're welcome to our LDN and IBD group to share or ask for support. The group has a terrific file section collecting all kind of interesting IBD data. Let's hope that LDN helps you as it has helped a lot of our members. Many of us have found LDN even more helpful when going gluten, starch and dairy free. It's ok to use a diet that suits you, as long as you feel better.If you want to read how others with Crohns / U.C or IBS have managed, please read the www.ldndatabase.comor go directly via this link:https://ldndatabase.dabbledb.com/page/other/YxfKeofLIngridFrom: johnwtomerlin <johnwtomerlin@...>low dose naltrexone Sent: Sun, April 17, 2011 2:32:14 AMSubject: [low dose naltrexone] i could use some help for crohns.

ive been on ldn for three weeks. When will it kick in? I have minor pain. i have gone big time on antiimlamatory diet. Five dr's want me on humira and i just can't see it. I am 53. Been doing this since 19.------------------------------------

[Guest guest]

I went gluten free for 6 months with no improvement, but when I restricted soy, the difference was remarkable. I don't believe there is any hard and fast rule, there may be the suggestion to go gluten free, and it may help many people, but it didn't help me personally. Each person is different, each case of illness is different, and we all have to figure out what works best for us. I do believe that GMO foods are at work here as well, as I used to be able to eat tofu with no problem 20 years ago, but now tofu would land me in bed for a week. I wonder if wheat is GMO? I know soy is, but not sure about wheat...

 

NikiOn Sun, Apr 17, 2011 at 10:07 PM, DeNormandie <blessedark2010@...> wrote:

I thought when taking LDN you should be on a gluten free diet and SCD. I thought that is what I read at the web site. I could be wrong but I will continue to do what is best for me. Sugar just causes candida over growth, obesity and other problems and well wheat, our bodies weren't designed to digest it to begin with.

 

On Mon, Apr 18, 2011 at 4:03 AM, Gunn Dybfest <gunn.ingrid@...> wrote:

 

Hi,

You may find that your symptoms gradually subsides, or LDN may start working after 3 months of use. It's said that it often takes this time to adjust the immune system. 

Great that your anti-inflammatory diet is helping you. 

You're welcome to our LDN and IBD group to share or ask for support. The group has a terrific file section collecting all kind of interesting IBD data. 

Let's hope that LDN helps you as it has helped a lot of our members. Many of us have found LDN even more helpful when going gluten, starch and dairy free. It's ok to use a diet that suits you, as long as you feel better.

If you want to read how others with Crohns / U.C or IBS have managed, please read the 

www.ldndatabase.com

or go directly via this link:

https://ldndatabase.dabbledb.com/page/other/YxfKeofL

Ingrid

From: johnwtomerlin <johnwtomerlin@...>low dose naltrexone

Sent: Sun, April 17, 2011 2:32:14 AMSubject: [low dose naltrexone] i could use some help for crohns.

ive been on ldn for three weeks. When will it kick in? I have minor pain. i have gone big time on antiimlamatory diet. Five dr's want me on humira and i just can't see it. I am 53. Been doing this since 19.

------------------------------------

[Guest guest]

On Sun, 17 Apr 2011 20:52:44 -0400, lindakcoach <lindakcoach@...>

wrote:

> For those with Crohn's, try going on a gluten free diet also for a

> period of time. In some cases that makes a huge difference.

However, in many cases it doesn't make a difference. The real problem for

more people with IBDs is not gluten but not being able to properly digest

starches and sugars.

So getting off grains, including rice, and potatoes would be a great

start. And be sure to take probiotics (but NOT any with bifidus in any

form -- though it's supposedly good for you, it isn't for people with

IBDS; in them (us) it colonizes and overgrows in the gut, crowding out

some of the bacteria that you do want there.

If you feel A LOT better very soon after avoiding all grains and starches

in general (and, of course, refined sugars -- feruit and honey are

normally ok) then the problem is that suffered by many thousands of people

with IBDs, which is not celiac but inability to digest the starches/sugars.

n

If you

> think gluten may be a problem it is wisest to get a blood test for it

> first. The antibody levels can diminish in two weeks. The tests

> through your MD are not 100% accurate, but it does give you a baseline.

> Even if your tests are negative, try going on a 100% gluten free diet to

> see if you notice a difference. There is a higher degree of celiac

> disease for people with Crohn's compared to the regular population. !%

> of the population are intolerant of wheat, barley and rye and 97% have

> not been diagnosed. There is a lot of undiagnosed cases out there. I

> attended a lecture on Friday by the lead CD doc from Mayo and he stated

> the above. If you are having problems find a Gastroenterologist who is

> knowledgeable on regarding celiac disease.

>

[Guest guest]

I used to avoid all kind of gluten. I got better, but not good enough. Now I have avoided all kind of grains, I am making my breads with almond flour, a typical SCD recipe, and I am not using too much carbohydrates (just vegetables). This is not the SCD diet, but is more of a low carb high fat diet. And it's helping me a lot. Within 14 days my health feel so much better. So this diet is to reduce weight (we are a lot of Crohnies needing to lose some stones), and I have to say my health is great now. I of course use LDN, it's like a double whammy, a good diet and LDN. There is one thing that differs from the SCD, in my diet dairy is allowed, creme fraiche / cream to make sauces, and unprocessed meat / fish / . As unprocessed as possible. And the food should be as clean as possible without

any preservatives.IngridFrom: n Van Til <mvantil@...>low dose naltrexone Sent: Mon, April 18, 2011 5:37:16 PMSubject: Re: [low dose naltrexone] Re: i could use some help for crohns.

On Sun, 17 Apr 2011 20:52:44 -0400, lindakcoach <lindakcoach@...> wrote:> For those with Crohn's, try going on a gluten free diet also for a > period of time. In some cases that makes a huge difference.However, in many cases it doesn't make a difference. The real problem for more people with IBDs is not gluten but not being able to properly digest starches and sugars.So getting off grains, including rice, and potatoes would be a great start. And be sure to take probiotics (but NOT any with bifidus in any form -- though it's supposedly good for you, it isn't for people with IBDS; in them (us) it colonizes and overgrows in the gut, crowding out some of the bacteria that you do want there.If you feel A LOT better very soon after avoiding all grains and

starches in general (and, of course, refined sugars -- feruit and honey are normally ok) then the problem is that suffered by many thousands of people with IBDs, which is not celiac but inability to digest the starches/sugars.n If you> think gluten may be a problem it is wisest to get a blood test for it > first. The antibody levels can diminish in two weeks. The tests > through your MD are not 100% accurate, but it does give you a baseline. > Even if your tests are negative, try going on a 100% gluten free diet to > see if you notice a difference. There is a higher degree of celiac > disease for people with Crohn's compared to the regular population. !% > of the population are intolerant of wheat, barley and rye and 97% have > not been diagnosed. There is a lot of

undiagnosed cases out there. I > attended a lecture on Friday by the lead CD doc from Mayo and he stated > the above. If you are having problems find a Gastroenterologist who is > knowledgeable on regarding celiac disease.> ------------------------------------

[Guest guest]

I have had remarkable results with UC - similar, but somewhat different, than Crohn's.

My UC has been a problem for over 10 years and now, after 6 months, the report

from my last scope (Feb, 26th) was " no evidence of disease"

My gastro docs were down to Humara or removing my gut - both bad choices.

5400mg of Mesalamine and 150 mg of Imuran daily along with intermittent courses

of Hydrocortisone and Prednisone were no help.

I started LDN, went gluten and dairy free and added green smoothes and rejuvelac.

The initial improvement started in 2 days...two days!

I had not received my LDN yet and the rejuvelac takes 3 or 4 days to make. So it had to be the

smoothies and removing dairy and gluten from my diet that got the ball rolling.

It might not work for everyone but it's worth a shot.

Harry

[low dose naltrexone] Re: i could use some help for crohns.

For those with Crohn's, try going on a gluten free diet also for a period of time. In some cases that makes a huge difference. If you think gluten may be a problem it is wisest to get a blood test for it first. The antibody levels can diminish in two weeks. The tests through your MD are not 100% accurate, but it does give you a baseline. Even if your tests are negative, try going on a 100% gluten free diet to see if you notice a difference. There is a higher degree of celiac disease for people with Crohn's compared to the regular population. !% of the population are intolerant of wheat, barley and rye and 97% have not been diagnosed. There is a lot of undiagnosed cases out there. I attended a lecture on Friday by the lead CD doc from Mayo and he stated the above. If you are having problems find a Gastroenterologist who is knowledgeable on regarding celiac disease.

[Guest guest]

Niki,

Thanks for filling us in about soy lethicin and soybean oil. Good to know the reasoning behind why they are ok. In addition to gluten, I cannot eat soy or dairy also, and am now reacting to corn. Dairy proteins and soy proteins especially, cause RA inflammation all over my body and most joints. The last time I drank soy nog three years ago, the pain was so great, my thoughts were if I hurt this much for the rest of my life I am not sure I wanted to continue living. The pain subsided in 24 hours. I am judicious in reading every label of foods I buy.

I believe being gluten intolerant caused gut inflammation (but no gut pain) and that caused leaky gut. Therefore undigested proteins were leaking into my blood system and set my body up for auto-immune diseases. Plus created a huge strain on my adrenals to keep putting out cortisol to combat the inflammation, leaving my adrenals very depleted. In hindsight I think it started with a life time of eating gluten. I am 71 years old. I have had serious fatigue and muscle pain since I was 40 and was diagnosed with fibro 15 years later. It has taken 30 years to figure this out. In January I had cancer surgery for the removal of three salivary glands affected. How this might have been related, I don't know, other than my immune system being depleted for so long. Getting on LDN almost a year ago was a life saver for me. Helped greatly in furthering my healing process. BTW, I am now cancer free and have a 95.1% positive outcome. It was stage one, slow growing and does not metastesize. I am exceedingly fortunate.

I tell my story to bring awareness for those who might relate. So many people have celiac disease or are gluten intolerant, don't even know it, and are being treated for other diseases that end up being ways the body manifests it.

Kind regards,