4 months on Entocort still have symptoms

[Jess]

Hi Everyone
I'v been thinking about posting for awhile... Four months ago I bit the bullet and agreed to try six months of Entocort, three pills a day after three months of terrible D. I honestly feel so much better the constant stomach aces are gone and I am not having emergency situations. However, I am still not having solid bowel movements and this worries me. I am only going to the bathroom once (AM) or twice a day which is a huge change but it is still not right. I am starting to feel scared that I will never be okay. My Dr seems to think I have IBS on top of the celiac and MC. My recent blood tests and stool tests all came back normal. I am not eating gluten and have been gluten free for seven years. I also do not eat dairy and I consider myself a very healthy person. It makes no sense to me... What could it mean that I am still having D on Entocort? Is there any of you who find you have to stay on it forever? I am only 31 and would like to just feel normal. I know you all understand how this feels. I am sure my worrying is really not helping anything.
Thanks!
Jess

[tex]

Hi Jess,

I'm sorry that you're still not in remission. The most likely problem is that you are probably also sensitive to soy and all legumes in your diet (at least half of us are), and if avoiding those doesn't do the trick, try also cutting out eggs and anything that contains yeast.

One thing is for sure, if you cannot achieve complete remission while on Entocort, you will surely relapse when the drug is discontinued. And yes, stress is a big factor in this disease, unfortunately. The stress can create an atmosphere where the reactions tend to be self-perpetuating.

Good luck. I hope that you'll be able to fine tune your diet and enjoy complete remission.

Tex

[ant]

Dear Jess,

I am still on entocort 3 years on (now averaging 3mg every other day) and I am also GF,DF,Legume and Soy F,EggF,NightshadeF. This drug and dietary treatment keeps me "ok" about 85% of the time.

My Dr seems to think I have IBS on top of the celiac and MC.

That is You have symptoms of celiac and MC that are not uncommon, causing more food intolerance than just gluten and dairy. Many of us have more then one or two food intolerances.

Wishing you all the best in finding your path to remission, ant

[wmonique2]

Hi Jess,


Tex already responded and so did Ant...but I'll say this: too many fruits and vegetables did it for me. Too much fiber that we cannot handle.

Have you thought about taking the enterolab test? It would narrow down your intolerances....You can read about it in this forum.

I have been on entocort on and off for about a year.

Best wishes,

Monique

[Leah]

Hi Jess. I'm surprised Tex didn't laugh at the doctor's " you may have IBS also" remark, since IBS is not a DX at all. Like a few have said you probably need to cut out soy and it's legume family ( I had to about three months in) and see how that goes. It's hidden in many products. Fresh fruit and veggies are also an irritant if your intestines aren't healed enough ( like Monique said). You can add those back in later.

Now, I have to say that once I slowly got off of the Entocort, My BMs were also not "right"- never solid. That's when i started to pay attention to all of the talk on this forum about mast cells and histamines. You should read some of the past discussions. Anyway, I took a Claritin and low and behold... NORMAN! I believe Polly had the same thing happen to her. I now take one 10mg. 24 hour antihistamine ( Allegra is another) once a day. No Entocort. It took me about a week to get use to it, but I have had solid BMs ever since. I also try to not eat as many left overs which are high in histamines.....

It's a long road to recovery, but you are in a good place for the info you need to get there. good luck
Leah

[Gloria]

Is there any of you who find you have to stay on it forever?

There are a few of us who are on a maintenance dosage of Entocort. I've been trying to get off of it for 5 years, but to date have been unsuccessful. I believe that mast cells (histamine-related) are responsible for my being unable to achieve remission without drugs.

Gloria