Update and Recap

deltawolf · Post by **deltawolf** » Thu Aug 25, 2011 8:36 pm

I had already been GF for 5 years due to Celiac and that worked. Then 1.5 years ago the D started again I went to my GI and he though may dairy and I substituted soy milk in my coffee and got worse. Then I went SF, got better not 100% though. Then for the last 10 months I got worse and worse. Wanted to see a new GI who specialized in Celiac. She did a colonoscopy and found the LC. She put me on the Pepto 3:3x/day for 2 months (June 14th). I was not getting better, I found this site and then went DF. Started feeling better but not great and then went egg free as well. Still not better, watery very soft D about 5x / day but that was better than 10-15x/day.

So on Tuesday I had my follow up visit on Tuesday. I spoke with her about going DF/EF and she said she could see the DF, but what did I have against eggs? (Hey I was and am willing to try just about anything to feel better) So her thoughts were to do any of these: just take immodium, or go on Ascal, or Entecort. After talking further she thought the Entecort would be the best way to go. Even though I really do not want to take meds but I just want to feel better, so I thought why not give it a go.

Well I am on my 3rd day and what an improvement already. The day after my 1st dose I soft pencil stool and about 4 BM's which I had not seen in a while. Day 2 more soft pencil stool and only 2 BM's. Day 3 no BM's and I am feeling well to boot.

My GI has me on (side note) while I was typing this I had 1 soft pencil stool) 3 entecort / day for 3 months.

So here's hoping that this works alongside staying GF/DF/SF/EF, but hoping I can maybe add eggs back for more food options at some time in the future. GI also things I should be able to add back dairy, but I am not so sure, but will probably give it a try when I am well for a while.

Just thought I would share some good news with the diet and Entecort. I will update soon as I move along in the process. Thanks again for all the support and encouragement that all of you have given. I can see from this site that I am very lucky to have been diagnosed with Celiac and then the LC so quickly and I am very thankful for that.

mbeezie · Post by **mbeezie** » Thu Aug 25, 2011 8:56 pm

Amy,

Thanks for sharing your positive post. So glad you are figuring out the diet triggers and that Entocort is working. We've had some members be able to add some foods back and many others have lasting food sensitivities - time will tell whether you will add foods back. Hope you have continued success!!

Mary Beth

Post by **tex** » Thu Aug 25, 2011 10:06 pm

Amy,

That sounds promising.

Thanks for the update,
Tex

Gloria · Post by **Gloria** » Thu Aug 25, 2011 10:06 pm

I always write "Never underestimate the power of Entocort." When it works, it is like a miracle. I'm so glad you are experiencing some relief.

Gloria

sarkin · Post by **sarkin** » Fri Aug 26, 2011 7:24 am

Amy,

That does sound promising. I tested positive for egg antibodies, and have dropped them - but they didn't have the same catastrophic on me that dairy & gluten do (which is why I didn't figure it out). I'm so glad you've found a combo of diet & meds that's working. I do hope I might eventually be able to eat an egg once in a while (I'm thinking about early 2013!). I'm finding it surprisingly easy to avoid legumes along with dairy and gluten. Hopefully your celiac experience has given you the label-reading and food-avoiding skills you need to adjust...

Glad you're feeling better!

Sara

deltawolf · Post by **deltawolf** » Fri Aug 26, 2011 9:20 am

Thanks all. Yeah being Celiac 1st really gave me an advantage to food label reading. I of course made a mistake while on vacation and bought dairy free chocolate, I missed the soy flour being in it. But it happens though I try to avoid it of course. I am just so glad to be making progress, I was getting a little worried and frustrated, as I am sure many others have.

Thanks

Post by **tex** » Fri Aug 26, 2011 10:08 am

Amy wrote:I am just so glad to be making progress, I was getting a little worried and frustrated, as I am sure many others have.

That's one of the biggest problems that we face here on the board - trying to convince people to continue with the diet, in the face of slow progress. It's tough to convince people to continue with their diet changes, when they aren't seeing improvements as quickly as they had hoped. It's easy to assume that the diet isn't working, and to go back to eating inflammatory foods. With MC, patience is definitely a virtue - a huge one. If this disease doesn't teach us anything else, it at least teaches us patience, and perseverance.

Tex

deltawolf · Post by **deltawolf** » Sat Aug 27, 2011 9:27 am

If this disease doesn't teach us anything else, it at least teaches us patience, and perseverance.

Tex this is very true, I have never been very patient but that has helped me in getting a diagnosis for my issues quickly. I just would not put up with feeling the way I did and just kept telling the Dr.s something was wrong.

sarkin · Post by **sarkin** » Sat Aug 27, 2011 12:28 pm

Amy,

I think knowing when to be patient (as well as how!), and when to put your foot down and insist, is a mysterious art. I am better at both being patient *and* at saying "this shall not stand," but maturing both instincts has taken me a long time (and "wisdom to know the difference".... not sure I'm anywhere close yet!).

I do agree, having patience *and* refusing to be patient with unacceptable misery are both powerful tools for an MC-er (or celiac-er)...

--Sara