Hi from Alice

[Alice]

Hi everyone,

Last weekend I completed my latest task for my parents (for now, anyway) and that was moving my dad (93, frail, Alzheimer's) down to Cincinnati to be close to me. I was worried about the plane trip - would it be too much for him, would my sister get lost (she was bringing him) in the airport (she's a novice flyer), etc. etc.

But they made it fine and he's now safe in a wonderful facility called Arden Courts. If you ever need to place a loved one, I would highly recommend this chain.

So now we can bring him home for dinner, take him out, etc. and I think he is quite content. He thinks he's still in Minnesota, which is fine.

I read the recent polls here - and report that I can eat every fruit and veggy with no problems. I'm in the minority, I know. I'm still very diligent about gluten, though, and as free of it as possible. I already did the eye color and blood type poll.

Hope to be here more often now that things are somewhat stable with dad.

Love,
Alice

[Lucy]

Hi Alice,

So glad that everything went well with getting your Dad settled in, and especially that you like the facility so well. That really means alot, I know.

Yours, Luce

[Polly]

Mornin' Alice!

It always makes me smile when I see a post from you. You were the first person I met who also had MC, and you were SO helpful!

Sounds as if the move went smoothly. My mom has dementia (not Alzheimer's but from multi-infarcts) so I can relate. Any change can be difficult, so I know how relieved you must be.

I'll look forward to hearing more from you. How long have you been in remission now? Is it more than 4 years???

Love,

Polly

[Alice]

Hi Polly,

You've been just as helpful to me along the way. Sorry to hear that your mom has dementia - it's very common, isn't it?

Yup - 4 years this month that I've been in remission! Wow!
I'm so happy - thanks for reminding me! Gf for nearly as long.

I hope you get to eat cheese every once-in-a-while now. I read your post about it. That would be such a treat for you, I know.

Love,
Alice

[MaggieRedwings]

Morning Alice,

I am so in agreement with Polly, as you being the first I also met here and were so very helpful to me. Glad that dad is liking where he is and that he is now close to you. Thrilled that you may be around more now.

Love to you and Bruce, Maggie & Frank

[barbaranoela]

So nice to see U Alice-----and very happy that dad is in a wonderful caring facility-----
This way it will be so much easier for U to hop over for a visit with him--

He is blessed to have a caring family~~~~

And 4 years,in remission, that deserves a

Chat with U soon---
luv Bubbs---

[starfire]

Alice,
I'm thinking your Dad will actually be much better off where you have him now. Glad you have him settled in and he isn't aware that he has left his "home state".

Love, Shirley

[Momster]

I'm happy for you that you have your Dad near. It means so much to be able to be together and that you can be there for him.

I had that with My Mom for the 7 months before she passed away and it was a very special time for us. She was in the beginning stages of dementia also and that was hard, but thank goodmess the last few months the Dr. found a medication that helped her delusions and she was at peace and alert before she passed away.

Love - Momster

[Lucy]

Polly, Alice, and Maggie,

Perhaps you could give us a little more of how it was to be a pioneer in the very beginning, especially Alice -- how in the world did you figure out what you needed to get well? What was known at that time, and why did you take off in this direction by yourself?

All this fascinates me! I kinda think some of the others, like me, who don't know would like LOTS of details as you can remember and relate them, please. After all, we're standing on your shoulders.

Yours, Luce

[Alice]

Hi Lucy!

Well, it's a long story ! I think Maggie was on the board first, beat me by a few days - huh, Maggie? Also CAMary was there a little before me. Of course, Sally was there!

My story: My first bout with MC ended with a spontaneous remission
after a colonoscopy. My doctor told me I had MC, but didn't elaborate and I didn't ask any questions since I was into remission. I thought MC meant a small virus of some sort - hahah - dumb me. Thought that was the end.

8 months later - remission over and then I found out what MC REALLY meant! Tried asacol, rubinal forte (something like that - Maggie tried it too), they didn't work. Doctor was about to try Prednisone - no way! I read about Dr. Fine and called him for a phone conference. He recommended the Pepto treatment and that worked! It took the full 8 weeks but I went into remission. It was gradual. I had 2 phone conferences with Dr. Fine. My GI didn't seem to know much about the disease and he is one of the top GI's in the city. It was very frustrating, to say the least.

Dr. Fine also recommended testing for gluten intolerance because he felt that I wouldn't stay in remission if I was gluten sensitive. Had the test - positive for gs and intestinal damage from gluten.

Started the gf diet in September, 2001. That's when I joined Sally's board. I've been very strict with the diet and feel great. No set-backs at all! Now gf is second nature and just a part of who I am. I'm proud to have gained new skills -like cooking - (haha) as a result.

I'm thrilled to say the least. It was difficult in the beginning, but Sally, Mary, Maggie and others kept me sane! I owe the world to them.

I don't want this reply to get too long, so I'll stop - feel free to ask questions.

Love,
Alice

[starfire]

Hi Alice,
I think your post should be added to the personal experiences board. Probably in the one on diet since that's what worked for you.
Thanks for sharing.

Shirley

[CAMary]

Hi Alice!

I'm glad you've got your dad all settled in a new place and he seems to be adjusting fine. Hopefully your stress will be diminished by being closer to him - I know it was hard on you to have to travel back and forth to MN.

We leave for the Twin Cities the Friday - I really hope I can sample from the Bittersweet Bakery this time

Love,

Mary

[Lucy]

OK, so who was next to turn their poop over to the authority? Who tried the diet next?

How was it that dairy was discovered in some? Think it was Polly who figured it out first but how?

Yup, it would be neat to have these beginnings somewhere. Actually, I think it would be nice to have the story of Sally and the originals as a whole at the beginning of this board. Individuals would still be nice in the appropriate part of the board, diet or otherwise, but I just think the story of the "pioneers" would be so neat up front.

Alice, your 4 years of remission need to be somewhere at the beginning to give hope to those who are struggling.

Looks like I'm going to be like you, Alice -- no problems since going off all the sensitivities?

By the way, Alice, did you only test for one food? I wasn't sure how long enterolab had been throwing in the dairy casein.

Thanks so much!
Yours, Luce

[MaggieRedwings]

Morning Luce,

When I joined the board there were so few of us but I guess in some respects we were pioneers.

I was diagnosed in late April 2001 and my doctor had had only 4 cases in 17 years and told me he knew little about it and to do all of the research I could and we could share it.

This I did and the first place I found where I could ask and share was Sally's board. I also found other informational sites and I discovered that a gluten-free diet was a recommended method of help and a list of "do not eats" that could further irritate the colon.

I immediately went gluten free and eliminated all raw fruits and veggies as these were severely hurting me. I took the doctor recommended meds without steriods and advised him I would continue only as long as I felt I could. I dropped all meds in July 2003 which means I have been using diet for 2 years now. I felt the meds were doing me no good.

As time went on, I found that other foods seemed to be triggers and I know now that these are intolerants. It also took me much longer to have any relief going gluten-free since being a vegan we were extremely heavy grain eaters. I do miss those grains but not the resulting D. I have yet to say that I can utter the "R" word (remission) but hopefully some day.

Barbara, Polly, Alice, CA Mary were all with us back then. I think the D&D twins arrived sometime later and we went through their warm period before they became P&P.

It has been a wonderful time at the old home but a new life has started for us and we have had some people that have just continued to stay the course with us. The best part of this whole process and disease is the wonderful friends and family that I have been fortunate to meet and come to know here.

Tex thanks for the new home and we will continue to learn and eventually this disease may be one of the past.

Love, Maggie

[Alice]

Luce,

So glad to hear that you've had no problems since eliminating your intolerances! Good for you! It makes it all worthwihle - huh?

I didn't test for anything but gluten and intestinal damage, and don't remember if the casein test was around then. I'm thinking maybe Mary got tested next? Polly joined about a year after me, I think, so maybe by then Dr. Fine had added that test.

Being a pioneer was like being a medical researcher and detective: spending hours on-line looking for any bit of info that could possibly help and tracking down anyone who had ever heard of MC. There weren't nearly as many back then! It was scary and depressing, as well.

I would think that it is much easier these days to get a diagnosis and effective treatment.

Love,
Alice