Any choice but Entocort?

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Leah
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Post by Leah »

I hope the Entocort works for you. Just remember that when you start to get a little constipated, THAT is when you need to lower the dose…. not when the doctor told you to ( some will tell you to take the highest dose for a certain amount of time, then a medium dose for a certain amount of time, etc). Listen to your body. I did eat nuts in small quantities and chewed them very well. Later, I found that pistachios bothered me. Weird. Almonds and cashews are my go to.

Good luck!
Leah
lisaw
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Post by lisaw »

Leah, that is good to know about the dosage. I've got an appt later this week, so will start on it shortly. Right now I'm not eating nuts anyway- I ate a fair amount before, but it's prob best to continue leaving them out. Miss them a lot, as they're a great on the road snack when I'm out working, and a good source of calories, and without fruit and veggies there's very little "on the go" food I have to take in the car anymore, except a banana.

Some good news-I decided to try antihistamines, and did not wake up in the middle of the night for the last 2 nights with D. Yay! The stomach gurgling after eating also significantly decreased. Still plenty of early morning D, but that is manageable, and it's been nice to have a couple of days feeling better, with more energy. I know 2 days does not make a pattern, but since I'm responding, thought I'd add that update. Unfortunately though, that means I have even more foods to lose. What kills me the most is wine! I've been able to handle all of the food eliminations, and finding alternatives and new recipes, however I will be mourning wine:( Fish is on the list-does this mean all types of fish, fresh and canned tuna? For those of you on antihistamines, do they continue to help you at the same dose after long term use?

Lisa
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Gabes-Apg
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Post by Gabes-Apg »

Lisa
that is great news the antihistamines have helped.

Keep in mind that mast cell/histamine is not just about food and drink, it can be triggered by activity (exercise / getting hair dyed / Dental work) and environmental (pollen, chemical, weather change, )
The food /drink reactions can be exacerbated if you are having outside triggers as well.

down the track, with good quality healing, you may be able to add wine back in, with meals that are low histamine.
It would be near impossible to totally avoid all histamine type food and drink, the aim is to minimise the amounts.
I have noticed in the past 3 years there are more sulphide / preservative free wines on the market.

for on the go snacks, investigate a rice protein powder (or other type of protein powder) I mix this with coconut water, sml amount of raw cacao. Things like palao muffins work well, Freeze them in individual packs after baking, take them out of the freezer first up and they should be defrosted by mid morning.
On work days, for breakfast i have reheated vegetables with protein (fresh cooked chicken / egg / pork+veal mince) this gives me a good set up for the day.
Gabes Ryan

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Leah
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Post by Leah »

That's good news about the antihistamines lisa! Like Gabes said, it's really about the overall amount of histamines. When my outside allergies kick up, my gut also acts up a bit. … just a bit.
I take an Allegra in the am and a Benadryl in the pm and it seems to keep things very doable ( even if I eat a high histamine food). If I know I will be consuming a food that is left over, I might take a Histame ( DAO). If I know I am going to a social event or am going to drink white wine ( red is still too high), I will take an H-2 antihistamine like Pepcid. That seems to help tremendously. I just try not to take it too often.

So, the good news is that once you get some healing under your belt and you are feeling good and in control, you might be able to add some foods back in. Since weaning off of Entocort, I have been able to add small salads and raw veggies back in, homemade popcorn, black and white beans, hummus,soy free chocolate, decaf coffee ( with coconut milk), spicy food, and WHITE WINE ! THERE IS HOPE! You just have to bite the bullet now, and do everything you possible can to reduce the inflammation. it's so worth it :)

leah
lisaw
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Post by lisaw »

Thank you Leah and Gabes! Great to know, and encouraging. So, I would not take any antihistamines while on higher Entocort doses, correct?
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tex
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Post by tex »

Lisa wrote:Some good news-I decided to try antihistamines, and did not wake up in the middle of the night for the last 2 nights with D. Yay! The stomach gurgling after eating also significantly decreased.
:thumbsup: That's definitely encouraging.
Lisa wrote:So, I would not take any antihistamines while on higher Entocort doses, correct?
You may not need to take any (if the Entocort effectively controls your symptoms), but if you don't get complete control with Entocort, it's safe to take an antihistamine concurrently with Entocort. IOW, if I were in that situation, I wouldn't take an antihistamine if I didn't seem to need one, but I wouldn't hesitate to take one if it were needed to help control the symptoms.

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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