What do I ask the gastro doc?

Celie · Post by **Celie** » Thu Sep 09, 2010 7:53 pm

Hi all,
I was diagnosed with LC in July after 6 days in the hospital. The doc put me on 6mg Entocort for one month dropping the 3mg for a month. Two weeks into the reduced amount the big D came back (30x day). The doc warned me that might happen and instructed me to try Whelchol for a few days if it did. That did not work! Talked to the nurse who said doc approved increasing Entocort back to 6mg. With the 6mg of Entocort I am well.

My regular doc had suggested that I assume that the Entocort would put the LC into remission unless I had a relapse. So, I had allowed myself to believe that I would not have to deal with this again. In other words, I was in denial. That is over!

Now I am ready to figure out what to do. I see the gastro doc on Tuesday and I would love your suggestions for what to ask and what guidance I should expect from my doc. I don't know her well yet, but she has a reputation of working with patients well.

I plan to ask to stay on the Entocort until the fall semester is over. I can get a leave for spring which will give me some time to experiment with medicines and diet.

I want to ask about diet and food sensitivities? What tests are available that I should ask her to run?

What don't I even know to ask? You all have the experience I need right now!

Thank you!

Celie

Joefnh · Post by **Joefnh** » Thu Sep 09, 2010 8:05 pm

Celie the standard starting dose for Entocort is 9mg a day for 60 days. You may want to talk to your doctor about the manufacturers recommended dosing schedule.

Most of us need to take Entocort for 6 - 12 months at 9mg / day and then taper down as tolerated.

Are you following any type of diet such as gluten free? most of us need to eliminate gluten and a good portion of us eliminate soy and dairy as well, as we are sensitive to those ingredients.

I cannot state strongly enough how important the diet is in conjunction with the Entocort

--Joe

Celie · Post by **Celie** » Thu Sep 09, 2010 8:17 pm

I have not yet started any diet. I have been following a high fiber, low fat diet for several years trying to "eat right." This was all quite a shock! I am ready to try any diet. I just have no idea what I am sensitive to. The docs did the tests for Celiac disease and they were all negative. How do you know what diet to use?

I figured I would ask about a gluten free diet. One of my friends has used the SCD diet to control her son's colitis and swears by it. I have never had digestive problems before. Do you rely on the doc or do you figure it out on your own?

Joefnh · Post by **Joefnh** » Thu Sep 09, 2010 8:23 pm

Celie, look into at least gluten free diet. I cannot tell you how much good that has done to many of the members on this site. You will be amazed.

Statistically more than half of us are sensitive to soy product and quite a few dairy products. For Entocort to work, you have to eliminate whats irritating your system. I would bet that with MC (LC or CC) you are reacting to at least gluten.

You can also look at having testing done at Enterolabs to determine your sensitivities.

--Joe

Celie · Post by **Celie** » Thu Sep 09, 2010 8:26 pm

Can my doc order those tests or do I have to do that myself? Or, does it depend on the doc? I am ready to go gluten free. I have been studying what to eat. Do you have any good suggestions for learning how to manage?

Joefnh · Post by **Joefnh** » Thu Sep 09, 2010 8:30 pm

Celie you will have to order these tests as they are not part of the 'accepted' mainstream as of yet. This group however has proven themselves to be beyond excellent in their techniques and methods. A true leader in this field of study

Check out their website at:

https://www.enterolab.com/

Best wishes

--Joe

Celie · Post by **Celie** » Thu Sep 09, 2010 8:37 pm

Thanks Joe. I see. I had looked at the site, but wondered if I could make the arrangements locally. If not, I will go with Dr. Fine's lab.

Gloria · Post by **Gloria** » Thu Sep 09, 2010 8:59 pm

Welcome to the board, Celie!!

You will find a lot of helpful information on eating a gluten-free diet here: http://www.perskyfarms.com/phpBB2/viewforum.php?f=6

I agree with Joe that you need to be on Entocort for much longer than a month. Entocort is suppressing your symptoms; it's not healing your gut. Changing your diet allows your gut to heal and that process can take up to a year.

There is a great deal of information on this site and I'm sure you'll be reading voraciously like we all did when we were diagnosed. If you have any additional questions, feel free to ask. We are here to help you.

Gloria

Celie · Post by **Celie** » Thu Sep 09, 2010 9:36 pm

Thank you Gloria,
That is a lot of good info on starting Gluten free diet. I have a lot to learn. I am sure I will try the GF diet even if the doc does not recommend it. I really don't know this doc yet. I hope she will work with me. One of her partners treated me when I showed up in the emergency room with my potassium at critical levels. He started me on 6 mg of Entocort with instructions to reduce the dose. The doc that will be my regular gastro doc did not change it, but the most recent prescription is for a lot more than 2 a day. So, she may tell me Tuesday to take three a day.

Anything else I need to ask?

Polly · Post by **Polly** » Thu Sep 09, 2010 9:52 pm

Hi Celie!

It is common for most of us with MC to have negative celiac blood tests. Dr. Fine does stool tests which find the food antibodies before they get into the bloodstream. As far as I know, no other labs in the U.S. do these stool tests. Some have been able to get insurance to pay for them if their doc orders them. But most docs know little to nothing about Dr. Fine's research, unfortunately.

Good luck with your visit!

Love,

Polly

Zizzle · Post by **Zizzle** » Thu Sep 09, 2010 10:03 pm

Welcome Celie!
You mentioned you tested negative for celiac disease - did you have blood tests, gene tests, and an endoscopy and biopsy? Without all three, you can't completely rule it out. The blood test especially is prone to false negatives. But you can be gluten intolerant and not have celiac disease - good luck getting your doctor to agree with that. Some docs are still tied to old-school ways of thinking about celiac disease. If you had your HLADQ genes tested, they can help you understand what types of food sensitivities you might have, and how severe they are likely to be.

Are you lactose intolerant? If so, you may also be casein (milk protein) intolerant. Many of us have to eliminate dairy products as well as soy. Once you eliminate gluten, those two intolerances may become more apparent. But eliminating gluten is your first and foremost goal. I would recommend cutting out large and obvious sources of dairy (drinking milk, eating yogurt, cheese) and soy (soymilk, tofu, edamame), and worrying about hidden ingredients later.

You might ask your doc her thoughts about taking a probiotic, and which one she recommends.

She may also be willing to refer you to a dietician or nutritionist who can help you get started on the diet (in case insurance will cover it with her referral).

If your GI manages to answer all your questions and you leave there feeling satisfied, consider yourself one of the lucky ones!! Many of us have had docs who cringe at the thought of dietary interventions. They are so used to the medication-only route. Many still believe MC is a rare disease that occurs mainly in the elderly and has a high likelihood of spontaneous remission.

Ha!

Celie · Post by **Celie** » Thu Sep 09, 2010 10:15 pm

Hi Zizzle,
I will have to check on the tests they ran. I know Mayo ran a blood test and the residents ran a genetic test during my most recent local hospital stay. They told me that I did not have sprue, but I don't know exactly what tests were run. A good thing to ask. The gastro doc should have all those test results.

Celie

ant · Post by **ant** » Fri Sep 10, 2010 1:10 am

Dear Celie

Welcome, you already have lots of advice and caution how some docs might react.

In think you mentioned you were eating high fiber foods. If you have D from MC you should reduce your fiber to a minimum, not increase it.

Hope you have a good meeting with the doc and best wishes on your journey to remission, Ant

ant · Post by **ant** » Fri Sep 10, 2010 7:13 am

Dear Celie

On the subject of strength, length of use and effectiveness of Entocort you might find this link useful.

http://www.perskyfarms.com/phpBB2/viewt ... ct&start=0

Bottom line for me was that I:

a) needed it for longer that the GI doc thought
b) realized that it was a temporary fix (and by "temporary" I mean one year) while discovering and cutting out food intolerances
c) It was diet (helped by meds) that produce gradual healing, to the point I have now come off Entocort (hopefully for good)

Hope this is useful, best ant

natythingycolbery · Post by **natythingycolbery** » Fri Sep 10, 2010 7:15 am

Hello and weclome to the board.

I can't tell you exactly what questions to ask your doc, but i can tell you it does help if you go in with a list of questions to ask her, not matter how ridiculous they may seem to you to ask. It helps you focus a lot on the main things you want to know.