Long Term Entocort?

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tex
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Post by tex »

Babs wrote:I get that we are inflamed but if entocort is not allowing me to eat more foods does that mean my inflammation is large or just that entocort is not being fully absorbed since I have pancreatic insufficiency.
Entocort doesn't work for everyone. And Entocort does not heal the gut — it masks the symptoms of inflammation so that most people feel OK as long as they are taking it. As soon as they stop taking it, the symptoms return (because the gut has not healed, and the inflammation continues to be produced, if any inflammatory foods remain in their diet).

The only way to heal the gut is to avoid all foods that cause us to produce antibodies.

The purpose of taking Entocort is not to allow us to eat more foods — it's to control our symptoms long enough to allow our diet changes to heal our gut. If you continue to eat inflammatory foods while you are taking Entocort, whether it controls your symptoms or not, the inflammatory foods will continue to generate new inflammation, and your gut cannot heal as long as you are generating new inflammation.

Pancreatic insufficiency has no effect on the absorption of budesonide. Pancreatic insufficiency (in the case of MC patients) is caused by the inflammation in the intestines spreading to the pancreas. After we control our MC symptoms, then pancreatic insufficiency will disappear also.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
barbiem
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Post by barbiem »

HI Tex - no I am not on mezavant - tried it back in april/may but caused heart racing. Then tried asacol a month ago and caused severe diarrhea. I have 5 food journals dating back to November 2012 when all this started and still can't pinpoint anything. I thought it was yogurt so stopped for 2 weeks but no change. Then though macademia nut butter muffins and still think a possibility - thinking the eggs in them. Which would suck as I love them so and great to take with me when I go out for a snack. Only meds I take are the pancreatic enzymes that are prescriptions called pancreas MT4 and entocort and dessicated thyroid. that's it. do you think it could be something in there? I do get nauseas with water - what could be in there??? I know collagen from chicken broth makes me extremely nauseas! I just bought some bottled water to try and nauseas!! UGH!

Do you find it takes a few days for a reaction to occur - meaning diarrhea, stomach uneasy etc? I think that's where I get sooo frustrated and confused as my journal will show some days no issues with the usual foods and then other days a disaster.

:(
frustrating to say the least. don't know how you all did it!
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
barbiem
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Post by barbiem »

so you are saying the inflammation has spread to my pancreas? which is why I have fat malabsorption issues? How do I know what food causes inflammation?? Basically I should eat just chicken,beef, green beans and carrots for how long until I know this work for me? 2 weeks? 1 week? I will lose even more weight if I do that?? I am already too skinny. But if you suggest that is what I do to find out I will DO IT!! :)
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
barbiem
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Post by barbiem »

you also mentioned lab work on the stools to see something to help determine food intolerances??
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
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Post by tex »

Babs wrote:Only meds I take are the pancreatic enzymes that are prescriptions called pancreas MT4 and entocort and dessicated thyroid. that's it. do you think it could be something in there? I do get nauseas with water - what could be in there???
The dessicated thyroid supplement shouldn't cause nausea (or any other problems), and I doubt that Entocort would cause nausea. The only time I ever took an enzyme, it made me nauseous and I vomited several times during the afternoon, but that was a digestive enzyme, not a pancreatic enzyme.

If even water makes you nauseous, you might have gastroparesis (delayed emptying of the stomach). Do you by any chance have diabetes mellitus? Gastroparesis is a somewhat common side effect of diabetes.

Of course, MC can cause nausea by itself, and many of us (including me) have nausea problems when we are reacting.

Reaction times vary depending on the individual and depending on the food. Gluten (or oats) and grapes cause me to have D within 3 to 6 hours, but other foods (such as nuts) take longer, and don't always cause D. Instead I just feel bad, and maybe get a headache and/or other aches and pains. Foods that ferment (such as sugar or sugar alcohols) sometimes cause a reaction a day or more after eating them.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
barbiem
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Post by barbiem »

sooo interesting!!

so you are saying the inflammation has spread to my pancreas? which is why I have fat malabsorption issues? How do I know what food causes inflammation?? Basically I should eat just chicken,beef, green beans and carrots for how long until I know this work for me? 2 weeks? 1 week? I will lose even more weight if I do that?? I am already too skinny. But if you suggest that is what I do to find out I will DO IT!! :)


you also mentioned lab work on the stools to see something to help determine food intolerances??
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
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Post by tex »

Babs wrote:so you are saying the inflammation has spread to my pancreas? which is why I have fat malabsorption issues?
That's just my unprofessional opinion, based on the fact that so many of us here on this board have pancreas problems while we are reacting. Virtually everyone who has MC has fat malabsorption problems, and that suggests that the pancreas isn't producing enough lipase to finish the digestion process after the bile emulsifies the fat. Here's what I say about it in my book (beginning on page 21):
Other issues that can complicate the disease
Bile is released by the gallbladder into the small intestine to aid in the digestion of fats. Normally, about 90 % of excreted bile acids are reabsorbed from the intestines and recycled back to the liver and the gallbladder. The reabsorption takes place in the terminal ileum (the bottom end of the small intestine). The reabsorption process may be compromised when the ileum, along with nearby areas in the colon, becomes inflamed. If these bile salts cannot be reabsorbed and they remain in the fecal stream, they will often tend to initiate diarrhea and possibly other symptoms as well. It’s quite common for the inflammation associated with MC to extend into the terminal ileum.11

Logical analysis suggests that a possible reason why the bile fatty acids may not be properly recycled when they get to the terminal ileum (as they should be, if the digestive process were proceeding normally) might be because they are still coating the fat globules when they reach the ileum and consequently they are in a state where they cannot be absorbed. In other words, if the pancreatic lipase does not successfully hydrolyze the fats, then the bile salts cannot be reabsorbed. Since they cannot be absorbed and recycled, they pass on into the colon, contributing to diarrhea in the process.

That doesn't necessarily mean that the excess bile is the primary reason for the diarrhea, however. The failure of the pancreatic enzymes to hydrolyze the fats may be the cause of the problem, and the ultimate reason for the compromised pancreatic function is very likely connected with widespread digestive system inflammation that leads to pancreatic inflammation, known as pancreatitis. Also, consider that if most of the bile is lost, rather than recycled, the total demand for bile can increase to as high as approximately 10 times the normal amount. In the long run, losing all that recycled bile is bound to place abnormal demands upon the liver and gallbladder to keep up with the body's needs. This might at least partially explain why gallbladder problems are so commonly associated with microscopic colitis.

Those bile fatty acids are feedstock material that the body uses to manufacture cholesterol to supply its normal needs. If 90 % (more of less) of the bile salts that would normally be recycled, are instead lost due to malabsorption, then the body would obviously need to produce much more cholesterol from scratch. Since as noted above, that could be as high as roughly 10 times the normal production requirements, it would seem logical that serum cholesterol levels might go down, as a function of a long-term malabsorption issue.

In fact, that phenomenon has been documented for active Crohn’s disease.12, 13 It seems likely, then, that the other inflammatory bowel diseases, including microscopic colitis, could also be associated with this phenomenon.
Here are references 11, 12, and 13 from that quote:

11. Koskela, R. (2011). Microscopic colitis: Clinical features and gastroduodenal and immunogenic findings. (Doctoral dissertation, University of Oulu). Retrieved from http://herkules.oulu.fi/isbn97895142941 ... 294150.pdf

12. Hrabovský, V., Zadák, Z., Bláha, V., Hyspler, R., & Karlík, T. (2007). [Changes in lipid metabolism in patients in the active phase of Crohn's disease]. [Article in Czech]. Vnitr Lek., 53(10), 1035–1039. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/18072426

13. Hrabovský, V., Zadák, Z., Bláha, V., Hyšpler, R., Karlík, T., Martínek,, A., & Mendlová, A. (2009). Cholesterol metabolism in active Crohn's disease. Wiener Klinische Wochenschrift,
121(7–8), 270–275. Retrieved from https://www.ncbi.nlm.nih.gov/m/pubmed/1 ... 26/related
Babs wrote:How do I know what food causes inflammation?? Basically I should eat just chicken,beef, green beans and carrots for how long until I know this work for me? 2 weeks? 1 week? I will lose even more weight if I do that?? I am already too skinny. But if you suggest that is what I do to find out I will DO IT!! :)
I have no way of knowing exactly which foods might be safe for you. The best way to determine which foods are safe is to order the Panel C test from EnteroLab, because it includes several of the foods that you are eating.

https://www.enterolab.com/StaticPages/TestInfo.aspx

The point is, as long as we eat foods that cause us to react, we lose weight. If we get rid of the foods that cause us to react, our gut has a chance to heal, and we can begin to gain weight again, even on a very limited diet.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
barbiem
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Post by barbiem »

you have a book?? how can one get a hold of it? Can I do testing from Canada and send to enterlab?? Or is there one in Canada just as good? I did do the IgG antibody test from Alletess medical lab in the US very few foods showed up which is odd because things like almonds I am allergic to so why didn't they show up on the IgG test?? there is a ton of foods on the list I cannot tolerate yet it says I should be fine with those foods. I can't wait to see the allergist on Tuesday just to test foods etc. out and maybe get a clearer picture.

That makes sense - no one ever told me that fat malabsorption coincides with MC! Why do we all of a sudden get this so late in life - I am 48 and have had IBS for 20 years and thyroid disease hypo for 16 years. why now??!!

my 23andme test shows I have the variant for crohns but not colitis - isn't that strange?? does that mean this could possibly turn into crohns??

I am sooo sorry for so many questions and thank you for your patience and I really do appreciate your input and wealth of information. I want to get better and would love to be able to eat.

another question: it is very strange to me why a friend of mine when pregnant went into complete remission and could eat anything that she could prior to colitis-but after baby came she was right back to where she was prior with severe symptoms. What changes during pregnancy to make such an abrupt turn in symptoms?? is is the progesterone? is it the DAO?? any thoughts?

Babs
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
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Post by JFR »

Tex has written a book. You can buy it by clicking on the image at the upper right hand corner of this page. It is well worth owning. You will discover that much of what you have been told by doctors is simply wrong.

People from all over the world have used Enterolab. There is only that one lab in the US.

I hate to dash your hopes but your allergist is unlikely to be very helpful in discovering your food sensitivities. Enterolab tests for antibodies in the stool rather than in the blood, a method which is much more sensitive.

Tex is able to give much more detailed replies to the scientific aspect of this stuff. All I know is that by eating a very limited simple diet that has no gluten, dairy, soy, eggs and all the other foods discovered by the Enterolab testing plus keeping fiber to a minimum, I have been able to get my life back.

Good luck,
Jean
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Post by tex »

Babs,

Yes, the book covers all the questions that you have been asking, and pretty much everything that you might want to know about MC. It's a good reference book for anyone who wants to learn more about this disease, and how to control it. To answer your question, "why now??!!", the last chapter in the book provides a long and detailed discussion of my theory of how this disease develops.

I agree with Jean — any tests that your allergist will recommend will probably not be helpful for treating your MC. The only tests that we have found to be reliable for determining food sensitivities are the stool tests offered by EnteroLab.
Babs wrote:another question: it is very strange to me why a friend of mine when pregnant went into complete remission and could eat anything that she could prior to colitis-but after baby came she was right back to where she was prior with severe symptoms. What changes during pregnancy to make such an abrupt turn in symptoms?? is is the progesterone? is it the DAO?? any thoughts?


That's also briefly discussed in the book (on page 175), but basically the reason is because as you mentioned, hormones have a big effect on MC. For some women, just using HRT can prevent them from achieving remission. Some women go into remission when they become pregnant, and others go into a severe flare. The split seems to be roughly 50-50.

IMO, the outcome is determined by the primary mechanism that causes MC in each case. In cases where IgA antibodies drive lymphocytic infiltration to cause the inflammation (with only normal mast cell activity), then the odds are high that the high hormone levels will make the symptoms much worse. In cases where mast cell activation disorder is the primary problem, then the high DAO levels in the placenta during pregnancy may tend to induce remission. This is strictly my own opinion, and there is no dedicated research (that I'm aware of) that has specifically investigated this issue.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
barbiem
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Post by barbiem »

just ordered the book - can't wait to get it!!!!

So metagenics lab isn't good?? Do you all feel the cost of enterolab is worth it and what tests should I order? I guess I need to find out about shipping as the stool must reach them within 1 to 2 days I believe!! UGH - not sure if that is possible??

I am completely broke so I need to know if this is worth it - if it is, I will borrow the money and do it!!! What about hormone testing?

How do you all feel about the IgG antibody testing using blood serum and food droplets ?

barb
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
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Post by dfpowell »

Babs,

I am going to weigh in here about the enterolab test, I had it done last April after I had been on Entocort for 6 months, and then did the test again this past month when I had been off Entocort for 6 months. I had many more food sensitivities show up in this last test. So, for me, the Entocort masked my food sensitivities. I would recommend waiting until you have been off the Entocort for a while before doing the test. You can follow a GF/CF/SF/EF diet and keep a journal and/or try an elimination diet. I also followed the SCD for a long time only to find out I am sensitive to casein, almond and eggs so that diet was actually slowing my healing.
Donna

Diagnosed with CC August 2011
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Post by tex »

Is it worth it? Only you can answer that question. It depends on whether it is worth the cost to know for sure if certain foods are causing inflammation in your digestive system, so that you know for sure whether or not you need to avoid them. Most of us who have ordered any tests from EnteroLab feel that it was one of the best things that we have ever done, as far as our health is concerned.

I doubt that hormone testing would be very beneficial, because if any hormones were at elevated levels, there's not much you could do to reduce them. If you are taking any hormone supplements (other than thyroid supplements), it's more efficient to just stop taking them for a few days to see if that makes any difference in your symptoms. Don't stop taking your thyroid supplement, because thyroid treatments do not cause MC reactions.
Barb wrote:How do you all feel about the IgG antibody testing using blood serum and food droplets ?
This is just my opinion, and no one else's. It should be better than blood tests based on IgE antibodies, because an IgG test can detect chronic (long-term) systemic reactions, but it's still not much better than flipping a coin, as far as food sensitivities are concerned, because blood tests simply don't provide reliable information for food reactions in the gut. No blood test can compare with the stool tests at EnteroLab, for accuracy and reliability.

Donna has a very good point about the effects of Entocort. If I read your post correctly, you have been taking Entocort for approximately 2 months now, so it may or may not affect your test results. Probably it would affect them slightly, but not near as much as in Donna's case. But it's impossible to accurately predict such things, because we all have different responses to medications.

The safest thing to do (to make sure that your test results will be accurate) would be to avoid taking Entocort for at least a couple of months before sending a sample to EnteroLab. As Donna says, by then you may have figured out what is causing your reactions, and you won't need to spend the money on the tests.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by barbiem »

thanks Tex and Donna!! don't think I am able to go off entocort anytime soon but I think the only item that I haven't removed is the SCD yogurt and butter. Could it be casein??? If it take it out -how long until I notice a difference? Basically yogurt and butter are the only dairy I eat - oh and eggs but only in recipes like my macademia nut butter muffins. Should I just eat beef, chicken, green beans and carrots for 3 days straight and see what happens??

I just don't know what else I am going to eat if I cant have eggs, butter or my yogurt. the food will be hard to get down as my green beans are cooked in butter in a frying pan and overly sautéed. and my carrots are overly steamed with nothing on them. I wasn't able to tolerate carrots back in march to june but I can now - no nauseasness!!

What else can I eat?
babs
Babs
Canada
Feb 2013 diagnosed Lymphocytic colitis
SCD diet since March 2013
Mezavant April 30 to present still no success
entocort from feb 1 to 28 no success
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Post by tex »

Sure it could be the casein. The SCD is not a safe diet for most people who have MC, because most of us here are sensitive to casein. Eggs are not dairy products though, nor are they related to dairy products.

Provided that you don't have any traces of gluten in your diet from cross-contamination, and provided that the Entocort is effective for you, then you should see significant improvement within 2 or 3 days after you remove all casein from your diet (unless you're still reacting to something else in your diet, such as soy or eggs).
Barb wrote:Should I just eat beef, chicken, green beans and carrots for 3 days straight and see what happens??
Yes, try that. If that puts you into remission, then you can try eggs, to see if you can tolerate them. After that you can try adding something else, but only try one food at a time so that if you get sick you will know what caused it. And if you get sick, wait until you are not sick before you try another new food. You might want to test squash, or sweet potatoes, or red potatoes, for example.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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