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Silverlady 08-29-2006 10:35 PM

Mayo!! or Bust!!
 
Finally got an appointment to Mayo. The appointment is 4 Dec. It's not gonna be an easy trip. Most of you know I can't sit. So we are putting a twin mattress in the back of a van and I'm making the trip on my back. We are going to take two days to get there so it will not push my ability to do it. I've found someone who is going to housesit if my little dogs can be convinced she isn't food. Hopefully we can train them to accept her before we have to go. They will probably do fine without us. They are greedy little devils and will eat anything in the way of a treat. So she will have to use bribery.

Have any of you been to Mayo? Did you have to take your own wheelchair? We are going to be crowded for space. I'm hoping they have some I can use. I can't walk very far any more. What do you know about the hotel/motels around the clinic?

Billye

dahlek 08-30-2006 10:27 AM

Bravo! Billye!!!!
 
4-5 months is short for an appt, I think!

I recall reading lots of posts in the past, and most were positive. One key aspect does stick in my mind and that is the attention and overall quality of evaluations depend on how diligent the key, primary[?] doc is in coordinating your testing thruout that big place. If it were me having your multiple issues, I would want to be SURE that these aspects are all going to be addressed, both individually and in concert. Further, that should past and current testing lead into new or additional directions, that it all be DONE and over with at once.

That all said, I hope that there is some sort of Patient Rep. to whom you can direct these concerns, someone familiar w/that 'system' to see that they are truly addressed and coordinated in advance. While you may not get the answer or miracle cure we all wish for, at Least, it won't be a half-done exercise in futility-with the HALF-answers to boot!

I do know this: I fervently hope and then some that something can and will be done to ease your pain. I'll keep faith that it WILL happen! I've a catch tho, I surely hope that you can give us all the true 'skinny', blow-by-blow of what all goes on there? Other than the 'blur' of test A, B or C!

Sending you a boodle of comfy fuzzies in advance to soften your way! - j

dahlek 08-30-2006 12:20 PM

Billye! Fate or what?
 
I was hobbling out of the grocery store and saw a lady using a 'Braun chair Topper' ...it's a turtle top that picks up the wheel chair[folded] and tucks it into the top with out manual wrestling! I webbed up the name and found stuff on it. I'd encourage you to check it out. I spoke with the lady who has it and found out that: a] it's great in her book, b] wasn't cheap, about 5K[completely installed, and c] couldn't live without it.

I may be joking here or not....but I would bet that Melody, the demon E-BAY shopper could probably get you a dynomite deal.. Something to think on.

Hugs 'n all good things! - j

MelodyL 08-30-2006 02:41 PM

It's selling on Ebay right now for $.99
 
I kid you not. right now, it's 3:40 p.m. eastern time.

it goes off in 6 hours.

Here's the link!!!!

http://cgi.ebay.com/ebaymotors/Braun...spagenameZWDVW

They have one bid for $.99 cents and free shipping.

You have to pick it up and it's located in Indiana!!!

Boy, was I shocked.

mel

LizaJane 09-06-2006 12:07 AM

You might want to get an air mattress to lay on the floor of the van; then over it, you can put a tempurpedic topper, the 1 1/2 - 2' width one. Between the two, it might absorb the shock of going over bumps. My concern is that being low to the base of the van the vibrations and bumps would need to be well absorbed. But with a charger and small TV, you might have a ride of relative royalty! I can just imagine, lying in the back of the van covered by a comfy quilt, on a really soft mattress, with a driver taking care of all the details of navigating. Could be a nice experience, done right. A martini?

Oh, the pillows my daughter calls "husbands"---you know the ones that prop up your back in bed and let you attach a light to read or watch TV by?

I'm just thinking---how can we turn this into a luxury adventure?

But really, think of the all the little details that could make that trip comfy and don't skimp on them. Try to think about what makes you most comfortable--what positions, textures of bedclothes, type of mattress, and see if you can translate that into the van.

I love it that you are going...this is so exciting...finally, hopefully, a good, in-depth evaluation for Billye! Yaaah!

LizaJane

www.lizajane.org

Silverlady 09-06-2006 03:33 AM

Great ideas
 
Yep, I'm going. A really good friend who is a physcian, pulled some professional strings and got them to re-evaluate my case and they decided they just couldn't refuse her appeal. Friends like that are one of a kind and really wonderful.

Back to you... Liza Jane, thanks for the ideas. We have already bought the memory foam topper. Even tho we are going to use a twin sized mattress, I had my husband get the full sized topper. We'll fold it and that will give me two layers of memory foam and I'll top it all with a really soft fitted sheet. As for luxury, I'm thinking a box of maybe Godiva chocolates might help. Oh and lots of pillows and a down comforter. I'm making this as easy on myself as possible.

Any ideas for the trip are welcome.
Love,
Billye

glenntaj 09-06-2006 06:18 AM

I certainly think the Godiva chocolates are a good idea.
 
And, of course, a good laptop with Wi-Fi capability, so you can write and we can follow all your adventures--and then, once at Mayo, you can tell us what tests they're giving, what conclusions are being reached . . .and we can continue our practice of throwing stuff at you to suggest to the doctors. ;)

LizaJane 09-06-2006 03:27 PM

When I was going for surgery, Melody recommended Dove Bars. You might try them. Maybe do a comparison for us.

glenntaj 09-06-2006 03:51 PM

Ah yes. Forgot about them Dove Bars.
 
And, for those not on gluten-free diets, I understand Moon Pies are to die for. (I believe those are available in Texas,, right , Billye?)

Silverlady 09-06-2006 05:15 PM

Moon Pies an the accessories
 
Never thought I'd hear anyone from up North refer to Moon Pies. I thought they were exclusively for the South. I grew up hearing about Moon Pies and a big RC (cola).

As far as I'm concerned chocolate is great no matter how you do it. O.K. I've got the car full of chocolate now.

Back to the serious. I've found a personal humidifier on line that the Sjogrens folks recommend. I understand it will be really dry in the rooms up there.

Billye

dahlek 09-07-2006 01:17 PM

What is this good Humidifier? ...
 
Ohh, please, share? I'd always take a bath towell, totally wet, and put it over the blowers - would always be bone dry in the AM!


I know of a diabetic who keeps her meds in a mini-frig plugged into the liter. I can find out more if you wish...Tis easy..
Is there a place we all can send you your therapeutic choccies prior to, during or after this whole thing? Can only speak for myself, but CHOCOLATE IS GOOD!!!!!! Should anyone say to the negative,...I simply ignore them!
Imagine! Your hotel getting heaps of 'care packages'! Wouldn't that be cool? After all, you DESERVE THEM!

When I was in 'deep' VA, yes Moon Pies were a common source of nourishment! THE Good stuff is not to be ignored. - softest fuzzies ever, in heaping quantities! - j

Silverlady 09-07-2006 02:15 PM

Answer to Dalek
 
The personal humidifier I've ordered is the Medisana Personal Humidifier. I don't know much about it except for what they posted on the forum. It is packable.

I hope it will help. I use two humidifiers in the bedroom in the winter and one cool mist in the summer.
Billye

dahlek 09-07-2006 02:50 PM

Sounds good!...
 
If I don't find it first, I'm betting Melody will!
Melody [I hope you don't take offense - absolutely none intented] - But you DO have a very serious and admirable shopping gene! Have you ever considered consulting?

Billye, How many dozen Moon Pies do you want delivered to yer Hotel? OR, if the comfort requirement is necessary...where to send? PM someone...we'll all get together and pitch in! Should you get a 'deluge', no doc in the world would treat you 'litely'! They know, that we know, that they know? They are worse than gossipy old ladies in some quarters ...fuzzies and hugs - ALWAYS - j

jccgf 09-07-2006 05:13 PM

Quote:

Have any of you been to Mayo? Did you have to take your own wheelchair? We are going to be crowded for space. I'm hoping they have some I can use. I can't walk very far any more. What do you know about the hotel/motels around the clinic?
Karen from the GS/CD board took her son to Mayo a couple of years ago, and I think she had some tips for motels, restaurants, and such...BUT...I haven't seen her since BT went down. I'll see if I can track her down for you.

Otherwise, if you really need some leads for lodging...my son's girlfriend is from the area (her Dad works at Mayo), and I'm sure I can get some hotel tips from her. I'm a big fan of sniffing out good motel rates online, but it will be important for you to know exactly where you will be in proximity to the clinic.

On second thought...nevermind. I bet you are going to the Mayo clinic in Arizona. I'm so used to the Mayo meaning Rochester, Minnesota...because that is the nearest to me.... that I forget there are others :o. Karen was from Oregon, but went to the clinic in Rochester.

Well, December is still a ways away, so I won't wish you the good luck yet, but I am really happy that you were able to get the appointment.

Cara

Silverlady 09-07-2006 09:07 PM

more of the same,almost..
 
Dalek,
I can't eat Moonpies or unfortuntately Dove chocolates. :( I'm gluten free diet wise. Sjogrens has a high coincidence of gluten problems as do most autoimmune/inflammatory problems. I am just afraid to push my luck and compound my problems any more. But I appreciate the thoughts. We ordered the humidifier from Amazon. But there may be a better price from ebay. Melody will find it if there is. :)

Cara,
We are actually going to the Rochester Mayo. What do you know about the Soldier's Field Best Western? I was given the link to it on npnc by Wendy. It looks good but you never know how old the on line info is. I like the idea of the breakfast, transportation and new Dreamsicle Mattresses. I dread sleeping away from home because we have a Tempupedic mattress. I've also got a fedish about sleeping in someone elses bed. Weird.. I know. Restaurants are not an issue for me, since I can't sit without a lot of pain. I eat my meals pacing, sitting and laying down in increments continuosly.

Billye

MelodyL 09-07-2006 09:25 PM

Here's the humidifier info!!!!
 
Here's a link to the humidifer:

http://www.ekitchengadgets.com/meulp...=01-Hah1500EBP

-----------------------------------------------------------------------

Medisana Ultrasonic Personal Humidifier Hah1500EBP
Product Info Related Items
Features:· Moistens up to 1,000 cubic feet of air in approximately two hours · Helps break up congestion and make breathing easier all while you sleep; includes eucalyptus cold therapy sample · Up to 10 hours of continuous use · Ultra-sonic technology for silent operation · Features soothing blue LED lamp and hi/low vapor flow control

--------------------------------------------------------------------

AND WHAT THE HECK IS A MOON PIE????

Mel

Silverlady 09-07-2006 10:43 PM

Moon Pies
 
Mel,
It is a cake thingy made up of two large chocolate covered cookies with marshmallow cream in the center. To die for with an RC cola.
I knew you weren't from the south.
Love,
Billye

glenntaj 09-08-2006 06:08 AM

Mel--
 
--think Scooter Pie (that's a Northeasten thing, for those who haven't heard of THAT), only tastier (and a bit larger in diameter).

My wife was at a conference in Nashville and returned with a box of them, which I can't eat. Sigh.

I didn't know you were gluten-free, Billye. I humbly apologize and withdraw the Moon Pies--maybe some macoroons? :)

Silverlady 09-08-2006 08:18 AM

Macaroons it is.
 
Sounds great Glenn, as for the Moon Pies and Dove Chocolates, I can dream....sigh...
Love,
Billye

MelodyL 09-08-2006 10:38 AM

Oh!!!! SCOOTER PIES!!!!!
 
Now you're talking!!!!!

Oh yes, I remember well, my days of eating Scooter Pies.

How the heck do you think I ballooned to 300 lbs? when I was much younger.

Between the Hostess cupcakes, the Devil Dogs and something out of this world that I bet you never heard of called a SUSIE Q!!!!

Oh my god!!!!

Alas, those days are over for me.

I live on produce, produce, produce, fish fish fish, and veggies veggies veggies.

Alan eats this plus his protein whey shakes.

Oh, I'm happy to say he gained 3 lbs of muscle. Went from 184 to 187.

Of course he things he's fat now and I have to go to him

OH, no, my dear, you look just like Arnold Schwartzenegger!!!

He just LOVES THAT!!!

my god. I wish someone would tell me I looked like Gina Lolabrigida....


mel

dahlek 09-08-2006 11:05 AM

Billye, I'm sorry, W/everything else...
 
it really got tucked in the very back of my functional brain?

Have you checked out 'Homedics Squish therapy pillows'? I got a 'tube' in anticipation of my surgeries & I have to tell you it's like an adult socially acceptable...teddy bear! It's like a mini-bean bag to cuddle/support where you need it.. Got it cheap on sale at BB&B at the rite time.

Cara & Others, what kind of tummy acceptable things could one send in a care package for Billye {sorry Billye, but, you gotta admit if we can't feed YOU we can provide sustinance for your DOthers...} Asides, wouldn't WORD get around, that folks from ALL over are caring? FOR YOU?!! You betcha...!!!

OK MELODY? Gina YOU ARE!! Especially after the family reunion and bus scenarios! Take a LOOK at who you ARE NOW. Drop the baggage and live it up! Inside you are YOU! The package has changed, but the real-ness is still ever there!

Hugs 'n fuzzies to all of you! - j

PS: Melody, any clues as to how to motivate my own?

MelodyL 09-08-2006 02:14 PM

What do you want to motivate???
 
If you are talking about motivating your brain?, I can tell you what happened to me. All the speeches in the world, my own mother who couldn't stand me being fat, all the health issues I wound up with, all the talks people gave me, nothing applied to me. I never took it in!!!

Honest to god. And the funny part is I was always pretty!! People used to tell me I looked like Elizabeth Taylor when I was younger. Then they would hit me with "if only you lost weight"!!!

I don't really think anyone can really be motivated until something clicks in their brain saying "I do not want to look like this anymore". I'm being perfectly honest. Look at Al Roker, Randy Jackson, Carnie Wilson (and my own cousin). All of them had bariatric weight loss surgery and all of them either put the weight back on or they are slowly doing so.

All that surgery to reduce the stomach to the size of your thumb and you lose 100 lbs and slowly you start to eat again. When people who have had weight loss surgery are asked "why are you gaining weight again", they say "I can't give up the food and my stomach is getting bigger inside my body again".

So, even though they had major surgery, NOTHING CLICKED IN THEIR BRAIN!!

Well, my brain clicked in a major way after I went to Cornell Medical Center in NYC and spoke to a dietitian and learned what diabetes does to a body. I then decided "I don't want to look like this anymore".

Worked for me!!!! I can actually wear skirts (something I never did in my life!!!!

And shorts, OH my God, imagine being 55 and putting on your first pair of shorts??????

Now Alan lost his 73 lbs because he had a stent put in and as he put it "I don't want any more stents!!! He got scared.

He is now on the way to being Rocky Balboa. I think it's hysterical.

While I will never look like Gina Lolabrigida, I can sure give her a run for her money.

Imagine, yesterday, Alan and I went out for Breakfast. It's a very sociable place. There's a handsome guy sitting in the table next to us. We all start chatting, talking about winning the lottery, and he goes, Well, since I'm not married I don't have to split it with anyone".

All I said was "oh, a handsome guy like you is not married, how come?" And we started chatting. All the while Alan is eating his breakfast.

We finished up and he said "is this what you do when you go for breakfast without me"???? I burst out laughing.

Imagine, I'm almost 59 and he's jealous. I think it's a hoot!!!!

mel

jccgf 09-08-2006 11:44 PM

Quote:

Originally Posted by Silverlady (Post 3927)
Dalek,
I can't eat Moonpies or unfortuntately Dove chocolates. :( I'm gluten free diet wise. Sjogrens has a high coincidence of gluten problems as do most autoimmune/inflammatory problems. I am just afraid to push my luck and compound my problems any more. But I appreciate the thoughts. We ordered the humidifier from Amazon. But there may be a better price from ebay. Melody will find it if there is. :)

Cara,
We are actually going to the Rochester Mayo. What do you know about the Soldier's Field Best Western? I was given the link to it on npnc by Wendy. It looks good but you never know how old the on line info is. I like the idea of the breakfast, transportation and new Dreamsicle Mattresses. I dread sleeping away from home because we have a Tempupedic mattress. I've also got a fedish about sleeping in someone elses bed. Weird.. I know. Restaurants are not an issue for me, since I can't sit without a lot of pain. I eat my meals pacing, sitting and laying down in increments continuosly.

Billye

I almost missed this. No kidding....you are going to Rochester? Well, then, I will track down Karen afterall. I remember she had tips for others traveling there...on the old forum. Oh...I miss everything we had there!

I can also check with my son's gf.

Cara

MelodyL 09-09-2006 07:29 AM

The humidifier is selling on ebay for $10.99
 
Here's the link. As of 8:28a.m. eastern standard time, it has 10 hours left for the auction.

It's $10.99 on ebay.

here's the link....

Hope someone get lucky!!!

mel

http://cgi.ebay.com/NEW-Medisana-Ult...QQcmdZViewItem

LizaJane 09-09-2006 06:11 PM

Kahler Hotel
 
That's where I stayed in Rochester. It was connected to the hospital and very comfortable.

LizaJane

Silverlady 09-09-2006 07:06 PM

Kahler Hotel
 
Liza Jane,
I checked the website for the Kahler. It has one that is really luxourious and one that is pretty much plain, but certainly adequate. I've done the virtual tours and one thing has much started worrying me. There is so far to walk in these hotels. I do really well most days to get from one end of my house to the other. In Texas we pretty much have the type of accomodations where you just drive up and park pretty close to where your rooms are unless you are in a big metropolitan area. Down here we are not having to build so much vertically like NY. Most places are horizonal(picture a large ranch house). I know we can get wheelchairs in the clinic but what will I do at one of the really large hotels? Any ideas, anyone?

Billye

LizaJane 09-09-2006 07:43 PM

transportation
 
Billye--

My recollection was that the hotel was totally wheelchair accessible, as was everything else about Rochester. I remember taking meals in the Mayo underground eating court, and in a dining room off the lobby, and I recall that everywhere people where in wheelchairs or motorized scooters, walkers, on crutches. Everyone at the hotel was actually a hospital patient and the hotel functioned like part of the hospital. I chose it because it was the closest to the hospital (across the "street") and I believe it had a patient rate. The website has the price of $120/night for two beds. There's also a "Mayo patient rate" which includes free parking.

I'd suggest calling them about the wheelchair situation, but the fact that this is the closest is a big plus. At the time I had a whole lot of trouble walking, and that was part of what made my decision.

I think I got their name from the admissions people at Mayo, because they area closest.

Silverlady 09-09-2006 09:00 PM

more of the same
 
The price is good. I wonder if they have places to rent wheelchairs that are close. We aren't going to have room to put my wheelchair in the van. A twin mattress will take up most of the room and we need luggage for at least a week. I think I'll call about the wheelchair problem. Liza Jane, do you remember if the hotel was the Kahler Grand? There are two Kahler's listed.

Billye

LizaJane 09-09-2006 11:24 PM

the bill
 
the amex bill I have just says Kahler Hotel. So I think not.

Silverlady 09-10-2006 02:53 PM

Appointment ???'s
 
Cara sent me this info about the appointments and I'm worried. There is no way I can sit all day for an appointment. Can any of you explain this?

"One thing Billye needs to know is that the Mayo schedulers tell you that your appointments have been scheduled throughout a 3-month period, which is always a shock! But the reality is that you go to the area/doctor you're supposed to be seeing in three months, and wait "for an opening" that day. You can almost always get in that day or the next...it is a very weird system. "

B

LizaJane 09-10-2006 03:52 PM

replied in private email about the scheduling issue.

Silverlady 11-09-2006 11:13 PM

It's getting to be that time
 
About 3 weeks left before we leave for Mayo. I've bought winter fuzzies to take with me, new winter boots (found some that fit), and started training the dog sitter. She came the first day and was introduced to the pups on neutral territory (the living room) she started talking to them and after they seemed willing to approach her, she offered them a treat apiece. Wonder of Wonders, they did not eat her!!! They barked a little then followed my husband back into their part of the house. It went so much better than I expected. Now we will see what happens when she walks with him back to their part of the house. I've decided not to say anything. She is very good with animals and not afraid of them, so I think it will work out.

I think all the details are worked out.I've given Liza Jane my iteniary and my cell phone no. so you can all keep up with me. I will have a laptop with me so I will be able to check in and let you all know what is going on and ask questions if I need to.

I called Mayo this week and spoke to the appointment desk in neurology. They told me that the doctor's secretary was handling this case. And transferred me to her. She said he had me scheduled for 3 full days of testing and used the term, 'you are booked solid". I asked her what tests. She started rattling off the tests and I recognized most of them. Some I didn't recognize. Oh and they are looking at my eyes too. And she said other tests may come up as we see what is going on with your tests.

So right now it looks like I don't know how long we will be there. But I'll be in touch with LizaJane at least and try to post on the board if I am able to.
But I'm thinking I may need some Dove bars to make this trip. Oh and some peanut butter cups and yes LizaJane, maybe an apple flavored martini. You only live once. I figure I better start eating gluten since that is one of the tests that will be done.

It is just going too fast....so much to do.
Love to all,
Billye

jccgf 11-10-2006 09:28 AM

Good luck with trip and all of the testing, Billye.

A gluten challenge is usually longer than three weeks, but the amount of gluten does seem to make a difference by some studies that I have read....so load up big time if you want to increase your chances of something showing up.

There was a young boy with gluten ataxia put on a gluten challenge recently (from our gs/cd forum) , and that was just 3 weeks... but they also looked for antibodies in the spinal fluid. He didn't have villi damage, but got a diagnosis of "neurological celiac disease", which is a great sign that the definition is broadening to include non-gut manifestations.
http://brain.hastypastry.net/forums/...ead.php?t=2888

In any case, back to the challenge, if results are negative after three weeks, the challenge should be continued on...checked again at 3 months, 6 months, and even at a year. Of course, one might consider increased symptoms as a positive challenge, even if the antibody tests/biopsy remained negative, but that is where the divergence of opinion comes into play.

In any case, GOOD LUCK WITH EVERYTHING if I don't cross paths with you again before you go!!!!

Cara

janster 11-10-2006 10:46 AM

Billye~
Mayo has wheelchairs there and also escorts that will take you to your appointments if you need one. You just need to request one when you get there. They won't stay with you the whole day, but after each appointment the area where you are will request an escort and one will come to push you to your next appointment.

If you don't feel you need an escort, always go to subway level to find which building you need to be in before you get into an elevator. The subway level is where everything is marked and you can find your building. There are volunteers standing by the elevators (in blue shirts) to direct people also. Once you follow the signs and find your building, then take that elevator up to the floor you need. There's only one patient/visitor cafeteria and that's on the subway level also.

All hotels are handicapped accessible, have free parking and free shuttle service to Mayo, but the drivers do appreciate a tip.(a buck or two) They drop you off at the front door and pick you up at the front door at certain times. Your hotel will give you a schedule and the Mayo doorman/woman will announce every arriving shuttle. (Shuttle in the far lane going to Best Western Soldiers Field, Holiday Inn, Micortel.....)

I always stay at the Microtel because it's $47.00/night for a single, it's VERY clean, their shuttle starts at 6am, (some don't start till 7am) and the breakfast is great. The Kahler Hotel is connected to Mayo by the subway and is the most expensive hotel, but I hear it is very nice. It is right across the street as someone told you, if you'd want to walk outside you can also.

I live about 2 hours from Rochester and go there quite frequently--lately anyway. If I can answer any questions I'll be more than happy to. Good luck on your trip if I don't talk to you before.
Hugs,
Jan

nancy-h 11-11-2006 01:34 AM

Mayo does have wheelchairs...
 
I grew up in a city about 40 miles from Rochester. One frigid Sunday afternoon when I was about 16, football was over and it was too cold to go skating (indoor rink - ha!), so a car full of us headed to Rochester in search of something, well, different to do. After cruising the city, we ended up at St. Mary's hospital - connected to the Mayo Clinic. We found the underground tunnels that lead from one building to another and several wheelchairs. Wheelchairs + teenagers - supervision = wheelchair races. We must have spent an hour or more playing our new sport and we planned to do it again. We never did as teens but I know a few of us who could do it today with our own chairs! So this is how I know Mayo does offer wheelchairs and, as Jan said, someone to push to your appointment(s).

I've not been back to Rochester for about 10 yrs. when my father had his open heart surgery there. We stayed at the Best Western Apache which I think has changed to a Ramada. At that time, it was very nice but not real close to Mayo.

Billye, please make sure to bring warm clothing as it is bone chilling cold in MN in Dec. It takes forever for cars to warm up so allow extra travel time and if you can, park in lots that are somewhat enclosed. Also, make sure your car is tuned up well for the cold and have a good battery.

If you have heard all of this before, I apologize. But I don't want you stranded and frozen waiting for a tow truck to come to your rescue.

Oh, and Janster is probably the best person here to answer any question about Mayo since she's been going there herself for quite some time.

That's it for now - good luck in packing and don't get caught having wheelchair races in the tunnels!!!:D

nancy-h

Silverlady 11-11-2006 09:06 AM

info is valuable
 
Thanks to all of you for your encouragement and the information. You have given me some really useful info. I thought I had asked about everything but Cara, I didn't know that I needed to be eating gluten now. I'll start eating everything I've wanted for a long time. It seems almost a sin to do it tho after being gluten free for a year.

Jan, the instructions about using the basement to find where we are going will probably come in handy when I get lost as I usually do when we are in strange places (no sense of direction). My husband could be dropped in the middle of a desert and still find his way, me...I'd be one of those walking in a circle for the rest of my life.

Nancy, I hadn't thought about emergency things for the car and your post reminded me of some things. Thanks.

Billye

jccgf 11-11-2006 12:42 PM

Quote:

Originally Posted by Silverlady (Post 37099)
Thanks to all of you for your encouragement and the information. You have given me some really useful info. I thought I had asked about everything but Cara, I didn't know that I needed to be eating gluten now. I'll start eating everything I've wanted for a long time. It seems almost a sin to do it tho after being gluten free for a year.

Billye

Billye,

Well, this is a VERY DEBATABLE point, and I should have expanded my answer!!!! Many people DO REFUSE a gluten challenge especially if they feel they have seen any progress at all. Some people have also reported 'autoimmune flares' with a gluten challenge, but these sort of reports are anecdotal.

The thing you need to know is that you must be consuming gluten for any of the antibody tests to show accurate, and generally a gluten challenge is longer...so as mentioned, even if the antibody tests were negative after three weeks of challenge... the length of the challenge should be extended. The other part of the picture... is that you can be adversely affected by gluten WITHOUT EVER TESTING positive for celiac disease, and there are plenty of people who feel they do so much better without gluten who had negative bloodwork. SO, you could do the challenge, test negative, but still be better off without gluten in your diet.

Lmb3 recently made that tough decision to gluten challenge her son for a diagnosis. His ataxia worsened while back on gluten, and the lab tests and biopsy still did not show any clear evidence of Celiac Disease. However, they still arrived at the diagnosis...perhaps based on the fact that he worsened while on gluten, and they couldn't find any other cause, and the mom has biopsy proven celiac disease, and he carries the genetic predisposition. But..his lab results didn't prove it.

Do you think you've had any improvements from a gluten free diet after a year? If Yes, then I'd really question doing the challenge, and perhaps accept your improvements on face value. Just know that your blood antibody tests are expected to be negative if you are on a gluten free diet (and if by chance they would be positive, it would indicate some hidden gluten is still sneaking past). [Any genetic (HLA) testing they might do is independent of diet.]

If after a year you aren't sure you've seen any benefit from a gluten free diet, maybe a challenge is in order, especially if the blood tests weren't done the first time around. Sometimes people have such obvious symptoms in the first days/week of a challenge that they stop it. Tough call!

Cara

Silverlady 11-12-2006 10:07 AM

Actually worse
 
Cara, I've been gluten free for about a year now. And I have actually worsened during that time. The reason I decided to do it is not the neuropathy, I had tried the gluten free diet the first year of the neuropathy, but actually the rheumatoid type arthritis. I just figured it might help some of the inflammation caused by the RA. But I can't say it has helped either of the diseases. I have gotten more and more crippled and the neuropathy has now moved into my hands also. So I can't in all honesty say that the gluten free diet has helped me. I'm just afraid to not do it in the off chance that it is helping some. It is still a tough call for me because to eat gluten seems like eating poison after not eating it for so long.

Billye

MelodyL 11-12-2006 02:28 PM

Billye!!!
 
Hi Hon.

Just wanted to include my warm hugs and fuzzies and all those what-nots!!!

Hope your trip brings you many answers and that you feel better.

All the best.

Melody

dahlek 11-12-2006 03:07 PM

Billye, I hope you send us 'post cards'..
 
Like those of 'Uncle Travelling Matt' from the 'Muppet Show'. Snippets of life being, essentially, a human test animal? With the right outlook, all the seriousness of the testing, the processes of being tested and the people you meet along the way....well, you must encounter some peculiar things.

Of course, the ultimate bonus would be a few ANSWERS along the way! Something I truly hope you find.

Heaps of pain free moments during your excursion and definitely many more after - j


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