Just when I think I understand what's going on...

Becky · Post by **Becky** » Sat Mar 22, 2008 12:42 pm

I had a GI doc visit on Monday. I've been on 9 mg/day Entocort since October and I've been stable the last couple of months. I'd, on my own recommendation, went df and gf. Plus, I've taken a probiotic. Anyway, the doc looks at me and says, " I really don't think you have food intolerances. Let's lower the Entocort to 2 a day and add Welcol since you had your gallbladder removed." He believes that my system was messed up from 2 months I spent in Indonesia, 20 years ago. I'm assuming he meant a parasite, which I'll ask more about at my next visit. I said, "ok" but was skeptical and thought I'd go home, have a sandwich, suffer and call him back. I've been eating wheat all week with no symptoms. I'm shocked! I haven't reintroduced dairy yet. I will be curious to see how this journey continues. For now, I'm enjoying some old friends, I had my first doughnut in 6 months today.
I hope everyone has a great Easter!

barbaranoela · Post by **barbaranoela** » Sat Mar 22, 2008 1:15 pm

to U too Becky----and sometimes I try stopping to UNDERSTAND---when different issues pop up!!! AS Lou says---*all part of life* and then I wanna

by the way why were U in Indonesia???

:bigbighug:

Barbara

Becky · Post by **Becky** » Sat Mar 22, 2008 2:11 pm

I went to Singapore and Indonesia when I was in college as a mission's trip. I had quite an interesting buffet at times, dog, rat and probably alot of "things" I don't know. It's probably true I had a number of "visitors" in my gut.
I love the verse on the bottom of your posts! I need that reminder daily!

harvest_table · Post by **harvest_table** » Sat Mar 22, 2008 2:20 pm

Hi Becky,

Wow, This surprises me!

You have taken a similar path to healing that I chose. The Entocort/ gf diet route worked pretty well for me- I weaned totally off the Entocort in 6 months but did not give myself a gluten challenge like you this week-your one gutsy
gal and it will be interesting to see if you continue to maintain control over your MC symptoms should you decide to continue to eat gluten products.

Wish you all the best and keep us posted.

Love,
Joanna

Post by **tex** » Sat Mar 22, 2008 3:32 pm

Hi Becky,

As long as you are taking any Entocort at all, you will probably be able to maintain remission. If you ever stop taking it completely, your food intolerances will probably show up within a couple of weeks, but for some people, it can take months.

There is a disease called tropical sprue, which has the same symptoms as celiac sprue, except that it is curable. It's possible that your doctor might have been referring to this, also, but your "hunch" is probably correct - he was probably referring to all the parasites and other pathogens that you may have been exposed to while you were there.

I gather you didn't have any food intolerance tests done at Enterolab.

Tex

Becky · Post by **Becky** » Sat Mar 22, 2008 5:32 pm

Thanks Tex,
No I didn't do Enterolab, which I think I should still. As always, thanks for your insights and input!

barbaranoela · Post by **barbaranoela** » Sat Mar 22, 2008 5:33 pm

Becky --how interesting---I would luve to read more about your mission work in Singapore and Indonesia----

Sounds very Xciting---

Yes, I imagine U ingested alotta visitors that U really didnt need roaming around your inners---

Take care---
luve Barbara

Becky · Post by **Becky** » Sun Mar 23, 2008 7:11 pm

Thanks Joanna,
Did you ever get tested via Enterolab?
Becky

Dee · Post by **Dee** » Sun Mar 23, 2008 7:12 pm

How are you feeling Becky?????
Hoping that you got to enjoy your Easter meal!!

Love
Dee~~~~~

Becky · Post by **Becky** » Sun Mar 23, 2008 8:43 pm

Thanks Dee!
I'm feeling great, a little tired because I sang in our choir's 3 Easter services today. I'm cautiously optomistic. I'm excited to get off Entocort. I've gained weight on it and I think it made me fatigued. I've enjoyed too many goodies this last week, goodies I thought I wouldn't be eating again so it's all a little confusing to my mind.
I enjoy reading your posts, you're always so positive and encouraging!
Happy Easter to you!

harvest_table · Post by **harvest_table** » Wed Mar 26, 2008 9:56 am

Becky wrote:Thanks Joanna,
Did you ever get tested via Enterolab?
Becky

Hi Becky,

No, I haven't had Dr. Fines stool tests done but seriously tossed around the idea the first year after my dx of cc but chose instead to focus on the med/diet route like your doing now.

Your at a very familiar stage of recovery that I found myself in weaning off Entocort and now, in hindsight, if I had Fines tests done at that time it certainly would have saved me alot of anxiety, time and frustration in regards to the numerous food trial and error hurdles I found myself jumping through in order to figure out my intolerances.

You have put forth such an awesome effort the last 6 months going gf while taking Entocort but if you do have a problem with gluten or other intolerances it will likely become evident within a couple months of weaning off.

It's been 4 years since my dx and I still toy with the idea of having his tests done so, if you have the means I would highly recommend them.

Keep us posted!

Love,
Joanna

mini · Post by **mini** » Wed Mar 26, 2008 1:25 pm

Hi Becky

Hope the weaning off goes well for you at the moment I am on 3mgs and everything is still fine so far. In 2 weeks I have to stop taking it before I see the GI again, so fingers crossed. I will keep you all updated to see if my remission remains.

Also with the Entocort, I have not put weight on with it however, I have noticed that I ache a great deal, feel extremely tired most of the time as well............who knows for sure if it is MC or the medication? LOL this is something within the next month I am sure I find out.

Glad you enjoyed eating your old friend

Post by **tex** » Wed Mar 26, 2008 1:52 pm

Becky,

To put the remarks that your GI doc made into context, I think it's fair to say that his position is "standard modus operandi" for probably 98% of the GI docs in this country. Most of them not only believe that food intolerances have nothing to do with MC, but the majority of them still seem to believe that once a patient achieves remission, no further treatment is necessary.

Most of us here have been told pretty much the same things by our GI docs at one time or another. If you can maintain remission for eight weeks, without any Entocort, and without any diet restrictions, then you can be pretty sure that he's correct. If not, then you're like most of the rest of us.

Tex

mle_ii · Post by **mle_ii** » Wed Mar 26, 2008 2:50 pm

FWIW I think that 98% of the GI docs think that unless you have IgE related alergies to foods then you should have no problems with food. That they think there's no such thing as food sensitivity or that IgG reactions aren't important.

Heads in the sand.

crranch · Post by **crranch** » Wed Mar 26, 2008 3:08 pm

The vast majority of Medical Deities like to reside with their heads in the sand. It enables them to go through their careers without having to question the gold standard test which were outdated 25 years ago....

Ooops, my typing filter must be broke today...no manners when it comes to dweeb docs...

Carrie