Gastro Visit

MaggieRedwings · Post by **MaggieRedwings** » Fri Jul 20, 2007 5:43 am

Morning All,

Well I saw my Gastro yesterday and he was so surprised to see me since I had disappeared from his radar for so long. They have temporarily "misplaced" my old file so we kind of started from scratch again. He gave me a 1 refill Entocort prescription and blood work to be done and seems pretty convinced I am definitely Celiac but wants to test again for it. We all know how accurate those tests are. LOL Will see him again in a month and in the meantime need the courage to start Entocort but since only 10% steroid will make a go of it tomorrow.

Today I am going to visit the Vitamin Shoppe at lunch since they have GF supplements and am adding calcium and folic acid to my regime. The leg and foot cramps have been getting worse and I am also adding the heart doctor to my August appointments. Too much high heart rate days and too many low BP days. I have a feeling we need to increase the meds but we will see.

I feel more encouraged today after seeing the Gastro and hopefully I will stay upbeat through the start of Entocort.

Love, Maggie

kate_ce1995 · Post by **kate_ce1995** » Fri Jul 20, 2007 5:57 am

Maggie, good luck with the entocort. I hope it gives you some relief.

How is your doc checking for celiac? You've been gf for so long, I can't imagine the blood test will show anything. A biopsy might, but what would you change about your approach to life? Maybe it would make the GI take you more seriously? I don't know.

Keep us posted. Maybe once you get your digestion under control the heart thing will settle down. I get a bit of an irregular heart beat when I eat something that doesn't agree. And we all know some nutrients are important for keeping the heart regular and healthy and if you aren't absorbing well...well you know.

Katy

Dee · Post by **Dee** » Fri Jul 20, 2007 5:59 am

Hi Maggie!
Glad to hear that your appt. went well.
I have never had any side effects while being on the Entocort if that is what is making you hesitant about taking it. Just remember, give it time to get the inflammation down.
This is the first time that I've seen anyone mention that they are on heart meds. I am one too that takes them for PAT. I have been doing pretty well with that problem and not having any episodes of rapid heart rate.
I see that a few of you have mentioned taking folic acid. What is it's purpose????
Hoping to in a couple weeks that the Entocort is working for you!

Love
Dee~~~~

starfire · Post by **starfire** » Fri Jul 20, 2007 6:46 am

Maggie.................my best wishes and prayers are with you.

Hoping you'll soon be posting how impressed you are with the effectiveness of Entocort. My wish for you is RELIEF from your symptoms and I hope it won't take too long.

Love, Shirley

Pat · Post by **Pat** » Fri Jul 20, 2007 7:00 am

Maggie,
Hope all will be better soon. I saw a new GI doc yesterday and was very encouraged too. They are starting me on a new med also, will pick it up today. Not sure what it is. They are getting the slides from the pathologist to make sure of the diagnosis. Like starting over too. They said they work a lot with Dr. Fine and I was very encouraged when they said they disagreed with my other dr when he said I would always have the D. The new one said they would definitely get this under control. It may take several weeks but they could do it. They have done it before many times with others and they felt sure they could do it for me. Yeah!!!!

Dee,
I take folic acid because my nutritionist said to. Here is a link that might answer some questions:
http://en.wikipedia.org/wiki/Folate
Hope that helps.

Pat

starfire · Post by **starfire** » Fri Jul 20, 2007 7:06 am

Pat..............
My wishes for your improvement are the same as for Maggie.
I have read what a tough time you are having and I surely hope and pray that your new med will help.

Love, Shirley

Post by **tex** » Fri Jul 20, 2007 8:16 am

I'm looking forward to reading some glowing reports of success, in the next couple of weeks. Best of luck with the treatment program.

Maggie, the only way that your doctor could get a valid celiac test at this point, would be by having you do a gluten challenge. I hope he's not contemplating that, but on the other hand, if he tests you without a challenge, it means that he's really confused about how to go about diagnosing the disease. I'm intrigued by his statement, (he might be correct, of course), but I'm curious about how he plans to proceed.

Love,
Tex

MaggieRedwings · Post by **MaggieRedwings** » Fri Jul 20, 2007 11:48 am

Hi All,

Thanks for the support and I am such a non-med freak that I will just have to face taking this - the results can't be worse than what is going on already.

Tex - I too wonder how he intends on doing this. If I find he is doing this via the blood work I am going to do on Monday, I will have little faith left in him. I am also in no way going to do a gluten challenge. I know my results if gluten is ingested and it aint a pretty sight.

Everyone have a great weekend and I hope in a few weeks to be Ms. Perky and more upbeat.

Love, Maggie

harvest_table · Post by **harvest_table** » Fri Jul 20, 2007 10:04 pm

MaggieRedwings wrote:I am such a non-med freak that I will just have to face taking this - the results can't be worse than what is going on already.

I've always sensed that about you Maggie, your a non med freak, and that's okay but I think your making a good call after suffering so long since your DX to try Entocort and see what happens. When you tackled a paleo diet being a vegetarian I knew you were looking for answers.

At the time of my DX, medications were my first choice and although many of the intital ones did not work for me (made me worse) a short course of Pred and then Entocort along with diet has seemed to put me on the right track. I do hope, if you can get your symptoms under control after all these years with medications and a diet similar to paleo that you can tweak to your comfort zone which can carry you after you wean off the meds.

I took it Entocort for 6 months. Glad your taking this step Maggie, its a good call.

Love,
Joanna

annie oakley · Post by **annie oakley** » Sat Jul 21, 2007 9:48 am

There's nothing wrong with not wanting to take meds. If there are other ways than great. I myself have been beating down a migraine headache the old fashion way the last two days. Essential oil rubs, heat and cold packs...a small amount of excedrin, meditation, prayer and rest. I even took yesterday off work to try and get this headache down.. I think stress brought it on with work problems and a few problems here at home. I see nothing wrong with hesitation...you are not a non-med freak. Just causious. Love Oma

Pat · Post by **Pat** » Sat Jul 21, 2007 9:37 pm

There is absolutely nothing wrong with not wanting to take medications. But sometimes there comes a time when we need to. I know you have been working at this for a long time. Diet, herbs, other supplements and you are still having D. D is not a good thing. Our bodies are not meant to have D all the time. We are losing precious nutrients from having the D all the time. If the meds help calm things down where we can start absorbing the nutrients then we can become healthier. The meds should be a temporary thing. Some may have to take them longer than others. I hope we can be the ones who just take it temporarily. Good luck! Keep us posted. I am starting my new med tomorrow. It is Lialda. It is a once a day Mesalamine. He is giving me a lot, 4 a day. I am a little nervous too. Will let you know how it goes. Fingers crossed!

Pat

barbaranoela · Post by **barbaranoela** » Sun Jul 22, 2007 3:50 pm

Maggie----good luck with your meds-----sometimes we have to lean to the right a little and try things we really are set against---

So good luck with the Entorcort---U have to keep *your HEALTHY road* by getting rid of those nasty creatures that invade us~~~~

luve Barbara

MaggieRedwings · Post by **MaggieRedwings** » Mon Jul 23, 2007 9:34 am

Morning All,

Well I bit the bullet and started the Entocort today - 3 pills for the first month and see where we go from there. Have marked my Outlook Calendar - can't live without it - for 3 weeks from today to evaluate the situation.

Will keep you all posted and wanted to start calcium and folic acid today but am holding up on that since Entocort along with Toprol for the heart and Liptor seem like enough for now.

Thanks for all the good information, wishes and just being there for me.

Love, Maggie