frustrated

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jmayk8
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frustrated

Post by jmayk8 »

6th week of entocort (I think...) and my D is so bad! I have NEVER had a problem with D. My LC symptoms were always soft unformed stool. I have been eating plain gf bread, gf vans waffles, white rice and on and off soft mashed bananas or the past 2 1/2 weeks and it just seems to be getting worse. I am just confused bc I would understand if my symptoms just stayed the same while I was on the entocort and it was just taking a while to heal but, worse? It makes no sense! I know patience is a virtue but I am just so frustrated and confused!
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Joefnh
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Post by Joefnh »

Jmayk8, I would think that 6 weeks should be enough for you to start seeing some relief. A couple of thoughts:

First not everyone will have a positive experience with Entocort, while it works for most we are all different. At this stage you need to talk with your GI doc about this

Next I know I have problems with most GF pre-made foods. Remember we are most likely not just reacting to gluten but a good number of us react to soy and other items as well. For me the GF baked good cause me issues with the tapioca that's commonly used as a thickener.

Can you back off to a simple meat like baked chicken served with white rice and a well cooked veggie liked carrots. For the time being avoid butter and a lot of spices. I would imagine some salt and even a bit of pepper would be ok. If you can tolerate bananas those should be fine as well. Early on going to a simple diet can be the best thing to do. You would not be the first to have issues with GF pre made goods and possibly the Entocort.

Another thing that helped me early on was eating multiple small meals through the day. I would have 5 - 6 meals a day and eat them slowly. This was beneficial as well in calming my system down

Let us know what your GI doctor recommends

Hang in there is does get better, and all of us have been where you are at now.

--Joe
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jmayk8
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Post by jmayk8 »

Thanks Joe,
This site is definitely a life saver!
Jenny
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tex
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Post by tex »

Jenny,

If I recall correctly, those waffles contain soy. Your symptoms may be coming from casein and/or soy. When starting out to try to find our way to remission with this disease, it's always best to cut all gluten, dairy, and soy from our diet, and then after giving the diet changes sufficient time to take effect, we can plan our next move from there. If that brings remission, then we can "test" soy, and/or casein, (one at a time, of course), to see if it affects us. If it doesn't bring remission, then we may need to look for additional foods that we may have to avoid.

It's possible that the Entocort could be causing your diarrhea, though that is a not a very common side effect. :shrug:

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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.
jmayk8
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Post by jmayk8 »

Yes they do contain soy!
and I eat them all the time!!! I will cut them out asap. Thank you!
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MaggieRedwings
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Post by MaggieRedwings »

Hi Jenny,

I for one cannot eat the Van's waffles even though they are GF due to the soy. Found it out the hard way. Would definitely, if I were you, go to basic diet without soy and dairy and see how things go. I am also one who cannot use Entocort so do it by diet alone.

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klhale
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Post by klhale »

Hi,

I cannot eat anything that you stated you are eating. I have never been able to eat GF foods. You should try to cut out everything you have listed and try something different.

Seriously,

karen :smile:
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Gloria
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Post by Gloria »

I agree with what everyone has written. It would be very unusual for Entocort to start giving you D after six weeks of usage. I suspect that your immune system has been fighting gluten, and now that you've eliminated it from your diet, it's looking at other problematic foods. Soy and casien are the likely suspects.

If you eliminate soy, but not casien, be prepared for your immune system to start reacting to casien. That's the way the immune systems works, fighting one intolerance at a time. That's why so many of us prefer to eliminate all of the most common intolerances at once. If all goes well, we can always test them one at at a time in the future.

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