Is this the way Entocort is supposed to help???

kitty16 · Post by **kitty16** » Sat Mar 24, 2012 7:55 am

Hi All,

This will start my 8th week of Entocort, Doc had me on 9mg every AM. My number of BM's a day has not improved but the consistency is pretty much Normal, (although like most of you mine only occasionally reached the watery stage, most times it is just very very soft). This week I have started on my own weaning down just trying to see if I can live with less and so far no change. Have I not given this drug a chance to really start working. Doc has checked off for 2 more refills Gastro. Doc also has me on Librax, with meals and 2 weeks ago added a low dose of Amitriptyline at bedtime. I also feel the Librax is doing nothing but the Amitriptyline may be helping??

Thanks,
k

nancyl · Post by **nancyl** » Sat Mar 24, 2012 8:09 am

Kitty,
Entocort worked for me within a few days, but I had also eliminated eggs, dairy, and soy, raw veggies, fruits, and sugar from my diet. Once I learned I would not heal until I eliminated gluten and then stopped eating that also. I was on Entocort about 9 months.

Everyone is different and you have to see what works for you. Have you eliminated any foods from your diet yet?

Nancy

kitty16 · Post by **kitty16** » Sat Mar 24, 2012 9:16 am

Hi,

I have eliminated corn, nuts, salad, most vegetables cooked and raw, most fruits, wheat and anything that has a sugar substitute as I was able to tell this set off the D.

I was GF for several weeks but the doctor told me my blood work said I do not have celiac disease.

Thank,
K

Deb · Post by **Deb** » Sat Mar 24, 2012 10:34 am

Kitty, unfortunately most of us were told we don't have celiac disease. We discovered the gluten intolerance through a stool test from Enterolab not from a blood test. Many of our doctors are unaware of the connection between our MC and our diets (see how nice I said that

Kitty, that's a dig at the doctors not at you. Deb

Post by **tex** » Sat Mar 24, 2012 11:13 am

Kitty,

As Deb pointed out, the blood tests that the doctors use to screen for celiac disease have such a low sensitivity that they will only detect fully-developed celiac disease, after major damage has been done to the villi of the small intestine. That means that it takes years of symptoms, before it's possible to get a diagnosis of celiac disease, (the average length of time to get a diagnosis, after the onset of symptoms, according to the latest research, is still over 9 years).

If you haven't accrued major damage to the small intestine, the blood tests are worthless. The antibodies are produced by the immune system in the intestines, not in the blood, and it takes years for significant numbers of antibodies to show up in the blood. The stool tests will detect gluten-sensitivity as soon as we begin to produce significant numbers of antibodies - before all that damage is done to the intestines.

When Entocort doesn't produce the desired results, it means that we have to eliminate the foods that are causing the problem, from our diet. If you wean off the Entocort this early, (especially, if you do it without fine-tuning your diet, and without giving your gut time to heal), you will probably relapse, but that's just a guess, based on the accumulated experience of the members of this board.

Tex

ant · Post by **ant** » Sat Mar 24, 2012 1:26 pm

Dear Kitty,

I had/have to use a combination of diet and Entocort to slowly, slowly get to normal BMs and then stay in remission (most of the time).

Dear Tex

If you haven't accrued major damage to the small intestine, the blood tests are worthless

Is the following logical thinking ?

A). The reason why Entocort is less systemic than other corticosteroids is the enteric coating that allows it to bypass the small intestines and release into the colon. Once in the colon it does not get into the bloodstream very easily.

B). If MC only happens in the colon (as many doctors assume and as is denoted by the word "colitis") then antibodies produced by even significant and long term gluten intolerance in the colon will not for the same reason as Entocort is less systemic easily enter the bloodstream. The inflammation would need to be in the small intestines for that (i.e. celiac)

C). So if we stick to the literal definition of MC (microscopic colitis) it is highly unlikely to ever be able to detect gluten intolerance effecting only the colon (MC) from antibodies in blood samples.

But a blood sample is the only test the 'establishment' trusts for gluten intolerance..... catch 22

(Of course, the a 'boundary' between the small and larger intestines is an artificial concept: MC and Celiac seem to be the same thing in different places)

Best, Ant

Post by **tex** » Sat Mar 24, 2012 2:06 pm

ant wrote:Is the following logical thinking ?

A). The reason why Entocort is less systemic than other corticosteroids is the enteric coating that allows it to bypass the small intestines and release into the colon. Once in the colon it does not get into the bloodstream very easily.

B). If MC only happens in the colon (as many doctors assume and as is denoted by the word "colitis") then antibodies produced by even significant and long term gluten intolerance in the colon will not for the same reason as Entocort is less systemic easily enter the bloodstream. The inflammation would need to be in the small intestines for that (i.e. celiac)

C). So if we stick to the literal definition of MC (microscopic colitis) it is highly unlikely to ever be able to detect gluten intolerance effecting only the colon (MC) from antibodies in blood samples.

But a blood sample is the only test the 'establishment' trusts for gluten intolerance..... catch 22

Best, Ant

A). Yes, except that it actually begins to activate in the ileum, (the lower third of the small intestine), because for almost all of us, at least the ileum is also inflamed, with an elevated T-cell count.

B). According to research, in order for the antibodies to appear in the blood, in sufficient quantities to cause a reliable positive blood test result, you absolutely must have at least a Marsh 3 level of small intestinal damage. That won't ever happen, unless you have a celiac gene. Occasionally, a serum test will trigger on a Marsh 2 level, but that damage level almost never happens with MC alone. It's actually rather uncommon, for MC to appear only in the colon. They just didn't look far enough, when they described the diagnostic criteria for the disease.

C). Hmmmmmmm. That's kind of a confusing question, because the key to the blood tests is the amount of small intestinal damage, and without a celiac gene, that damage rarely exceeds a Marsh 1 level. But, if you accept that definition, then yes, you will virtually never get a positive celiac blood test result, without a celiac gene. If you have a celiac gene, then it's possible to get a positive result, but only if you actually have enough small intestinal damage to qualify for a diagnosis of celiac disease, whether or not you choose to ignore the physical changes in the small intestine). See the dilemma? You can't get a positive blood test result unless you actually have celiac disease. I discuss all that in the book.

The thing is, the antibodies have to be abundant enough, and they have to enter the bloodstream in the small intestine, in order to enter the bloodstream at all. The colon is not set up to absorb anything but water and electrolytes, and despite increased intestinal permeability, that phenomenon appears to be restricted to the small intestine. I don't recall ever seeing any research that reported increased permeability actually being a problem in the colon, except for the infusion of water and electrolytes that occurs during secretory D, (reverse flow, into the lumen, rather than out). I don't know what carries the antibodies into the bloodstream in the small intestine, but it evidently doesn't happen at all, in the colon. Everyone talks about intestinal permeability, but the peptide absorption damage that it causes, appears to be exclusively a phenomenon of the small intestine, not the colon. I could be all wet, though - I'm just going by the fact that I don't recall ever seeing any research evidence to verify that it ever happens.

Now you see why gastroenterologists are so lost, and can't possibly understand the disease - they're looking in the wrong place. I'll give you another tip from my book - believe it or not, research shows that the colon is also virtually always inflamed in celiac disease. I hope I haven't just confused the issue.

Tex

DebE13 · Post by **DebE13** » Sat Mar 24, 2012 3:02 pm

Hi Kitty,

I'm starting my 8th week on entorcort too. My trips to the bathroom are usually around 2-4x a day and I have a range from almost norman to D. I'm trying to make the connection of what's in my diet to cause the D. I'm taking 3mg a day and have to consult with my GI in a month, which I'm not looking forward to.

I'm not familiar with the other meds your taking but am curious if you might have success with weaning if you try eliminating some problem foods from your diet. I've eliminated gluten, soy, dairy and eggs from my diet and it has helped. I'm far from remission and have been making a serious changes since late December. Hopefully you'll notice some improvements soon, keep us up to date on your progress.

kitty16 · Post by **kitty16** » Sat Mar 24, 2012 4:48 pm

Thank you all for the replies. The last time I tried gluten free only and did not see any improvement. I will resume GF and maybe this time with the medication i will see some changes. I don't really eat much dairy but will start paying attention just in case.

Thanks again,
K

Leah · Post by **Leah** » Sat Mar 24, 2012 6:27 pm

Just remember Kitty that it takes a while to see results when you take gluten( and dairy) out. I have been doing it for a month now. I was put on Entocort three times a day. Within a few days, I was back to only going once a day. A month later, I am alternating between taking 2 pills a day and three ( stepping down very slowly). I am still waiting for my Enterolab results, but so far I feel as if my diet change is good. No gas, no pain.
Good luck
Leah

ant · Post by **ant** » Sun Mar 25, 2012 2:42 am

Tex,

Now you see why gastroenterologists are so lost, and can't possibly understand the disease - they're looking in the wrong place. I'll give you another tip from my book - believe it or not, research shows that the colon is also virtually always inflamed in celiac disease.

Can't wait to read the book!

Best ant

Lili · Post by **Lili** » Sun Mar 25, 2012 8:44 pm

Hi I'm brand new to this group. I was diagnosed with collagenous colitis during the summer of 2010 (my summer of hell). It was the one of the last things they tested for because I don't fit the "text book profile" of collagenous colitis. I have been on Entocort ever since. I started on the 9mg, cut out dairy & did well. So my GI and I worked on slowly lowering my dose. I eventually got down to 3mg a day but was having D too often. I'm on 6mg now, scared to go any lower but appreciated reading about gluten and lowering my veggie, and wheat intake. I will definitely try to work that into my diet (or out of my diet!!). I feel safe on the 6mg and am wondering what everything thinks about just staying on Entocort? My GI has encouraged me to slowly get off it, and I have another appointment next month with him. I also found increasing my flaxseed intake and iron has helped bit. Thanks. Happy to have found this group

Post by **tex** » Sun Mar 25, 2012 9:22 pm

Hi Lili,

Welcome to the board. Entocort is probably the most effective medication available to treat CC, and it's relatively safe. Unlike the other corticosteroids, less than 20% of it is absorbed into the bloodstream, so it carries a much lower risk of adverse events than the other corticosteroids. However, even at the much lower systemic absorption rate, long-term use will slowly lower bone density, so that if it's used for decades, eventually, osteoporosis problems will develop, unless a way to counter the effect can be found.

This is a lifelong disease, once triggered, so in the long run, it's best to try to control it by diet, ideally. In severe cases, however, some members find it necessary to use both diet changes and Entocort, in order to maintain remission. By avoiding the main food-sensitivities, many members have been able to maintain control at 3 mg of Entocort per day, or even every other day, which significantly lowers the risk of bone damage.

Again, welcome aboard, and please feel free to ask anything.

Tex

Leah · Post by **Leah** » Mon Mar 26, 2012 11:43 am

Hi Lili. Tex is right. Bone density seems to be the main issue. I am also on Entocort and am slowly lowering the dose. You can alternate between 3 and 6 mg each day. My doctor made sure to tell me to take extra Calcium and vitamin D for my bones.
Welcome,
Leah

Lili · Post by **Lili** » Sun Apr 01, 2012 2:45 pm

Thanks Tex & Leah,
I'm still trying to figure out this group - how and where to post! Is there a specific place for venting?

My GI did warn about the bone density and unfortunately osteoporosis runs in my family so I take calcium and vitamin D daily.

Has anyone tried Aloe Juice? My GI said it wasn't good for CC but I have read some great reviews of it.

Thanks again!
I hate this disease but I can tolerate it when i'm not flaring