RE: Can't believe I'm doing this

[Guest guest]

I am tempted to try that too - but not yet convinced that I want to spend the $.

>

> Thank you for the affirmation :-) I've also ordered Enterolab tests for me

> and DS. I'll get it one way or the other. Or both!

>

>

>

> Laurie

[Guest guest]

well, i'm no doctor but have unfortunate wee bit of knowledge re

lyme 'coz we live in Lyme zone and my kid got bit.

here's a blurb:

However, a small percentage of patients with Lyme disease have

symptoms that last months to years after treatment with antibiotics.

These symptoms can include muscle and joint pains, arthritis,

cognitive defects, sleep disturbance, or fatigue. The cause of these

symptoms is not known. There is some evidence that they result from

an autoimmune response, in which a person's immune system continues to

respond even after the infection has been cleared.

from

http://www.cdc.gov/ncidod/dvbid/lyme/index.htm

>

>

> not been checked for it. Will ask for it to be added to the list of

> things to be checked.

[Guest guest]

>

> here's a blurb:

> However, a small percentage of patients with Lyme disease have

> symptoms that last months to years after treatment with antibiotics.

> These symptoms can include muscle and joint pains, arthritis,

> cognitive defects, sleep disturbance, or fatigue. The cause of these

> symptoms is not known. There is some evidence that they result from

> an autoimmune response, in which a person's immune system continues to

> respond even after the infection has been cleared.

>

> ===========

thanks. I looked into it today but don't think I have it because my

symptoms predate coming to the US. I had South AFrican tick bite

fever (Rickettsia africae) but that isn't the same as Lyme disease.

Shez

[Guest guest]

Current medical standards are NO repeat biopsies and NO gluten challenges,

once a diagnosis occurs. Repeat blood tests at 6 months and annually

thereafter are to check for diet compliance.

Only if you have continued symptoms and NEGATIVE antibodies would another

biopsy be needed (to find what ELSE you have wrong).

-----Original Message-----

LOL I had my endoscopy last Friday, I hate them so much, but you right, it

is much better than eating gluten : / My throat still hurts a week after

the procedure! I don't think I am a wuss but it is annoying. I do use this

opportunity to eat lots of popsicles though ;p

Now, I am new to the diet, and had my endoscopy so I went back on the diet,

my question is why do we have to have more endoscopies? Do they have to see

if we are getting better? In my mind I think well, they told me I have CD,

the diet works, I am happy, why do I have to go through that gluten

nightmare to have the test done again.

---

[This E-mail scanned for viruses by Declude Virus]

[Guest guest]

Not counting yet. Just waiting to see if I

have another bout of gastroenteritis this week (like last week)—I’m

not sure I’d stick it out if I keep getting sick.

Laurie

lbilyeu@...

From: SillyYaks

[mailto:SillyYaks ] On Behalf

Of Arlene Becker

Sent: Monday, February 20, 2006

2:36 PM

To: SillyYaks

Subject: RE: Can't

believe I'm doing this

Are you counting the days and the minutes?

Laurie Bilyeu

wrote:

Just 5 more weeks until endo—sorry,

I did explain that poorly. But thank you for thinking 8 weeks—it gives me

something worse to compare with. Let’s do keep up to date and hang in

there!

Laurie

lbilyeu@...

From:

SillyYaks [mailto:SillyYaks ] On Behalf Of Arlene Becker

Sent: Monday, February 20, 2006

11:46 AM

To: SillyYaks

Subject: RE: Can't

believe I'm doing this

Hey -- I NEED YOUR UPDATE!!!!!!!!!!!!! Don't stop! If our

gluten-free friends don't want to read this, they can ignore us. This

is helping me get through this period. I hope I will have been

back on gluten long enough to get an accurate result. It sounds like

you will be back on gluten for over 8 weeks. Is that correct? I

think my system is getting a bit more used to the gluten returning. The

nausea is what kills me. I just never dreamed I would feel so

different.

Laurie Bilyeu

wrote:

Go girl, you can do it. Maybe I’ll

buy some Pepto today. ***Gluten Challenge Update: Rumbly tumbly this morning!

I’m sure everyone wants to get this update every morning for the

foreseeable future and so I will oblige… (wink)

My endo isn’t even scheduled. I

return to Doc in 3 weeks to schedule it for 5 weeks out. This doc said 6 weeks

back on gluten because he doesn’t want a false negative. Me neither.

Laurie

lbilyeu@...

From: SillyYaks

[mailto:SillyYaks ] On Behalf Of Arlene Becker

Sent: Monday, February 20, 2006

12:09 AM

To: SillyYaks

Subject: RE: Can't

believe I'm doing this

Yes, I am feeling quite sick, but I am

determined to do this as I really want to know if I have CD. A lot of

people think I am nuts as they can't understand why I am torturing myself with

this as I will definitely return to being gluten-free after the

endoscopy. My reasoning is this -- if I don't have CD, then I will have

some gluten every once in a while and I will know that I am not poisoning my

system. I have been eating every gluten item that I missed so

much when I was gluten free. I thought I would be enjoying this so much,

but it's just not that way. I have returned to living on Pepto Bismol

which I buy in quantity. When is your endoscopy scheduled? I had

one Dr. say that you only needed to be back on gluten for 2-4 weeks, but most

Drs. say about 6 weeks.

Thanks for emailing me as your

understanding really helps me.

Laurie Bilyeu

wrote:

I was re-glutened just long enough to

coincide with exposure to the virus. I’m supposed to stay glutened for

another 5 weeks.

Are you feeling sick now, Arlene? How are

you managing? I hear you—whoever thought you’d say “I

can’t wait to have a thing stuck down my throat all the

way….” Never mind.

Laurie

lbilyeu@...

From: SillyYaks

[mailto:SillyYaks ]

On Behalf Of Arlene Becker

Sent: Sunday, February 19, 2006

9:34 PM

To: SillyYaks

Subject: RE: Can't

believe I'm doing this

When did you start back on gluten and how long will you be on it?

I think you might have an intestinal virus, so don't give up yet. I have

been back on gluten since January 19th and I can't wait until the

endoscopy!!!!!! I never thought that I would be saying that.

Judy

wrote:

*hugz*

the abuse we suffer is frustrating, hang in there, we are all here for support

when you need it. Vent all you want, we will understand )

*hugz*

JudyLynn

www.tomatothyme.com

My little plot of the earth ) Enjoy!

(always being updated)

From: SillyYaks

[mailto:SillyYaks ]

On Behalf Of Laurie Bilyeu

Sent: Sunday, February 19, 2006 6:34

PM

To: SillyYaks

Subject: Can't believe

I'm doing this

Maybe I’ll pull my hair out instead.

I tried to start a gluten challenge last week and immediately got a migraine

then nausea/vomiting/diarrhea. I swore that was it, I had my diagnosis.

But…I was exposed to an intestinal virus just before that also which *could* have accounted for the

sickness…

So, I’m trying again. Oh, man, I

hate this. I just ate cous-cous for dinner. We’ll see what happens.

Laurie

lbilyeu@...

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[Guest guest]

I appreciate you clearing that up for

me. I go over the results with my doctor this week. My BF and I were

talking about getting him tested next, what happens if you have been on the GF

diet for a while, feel 100% better, no problems now, but the doc says no it isn’t

Celiac’s? How would everyone handle this? My thoughts are

stay with what is working, but I would kind of like to have an answer. I

ask since my father had the test recently as well. He went back to gluten

for the test, but he maintains a strict diet outside of the test. He

feels great, can walk again, gained weight and everything, but the doctor gave

him his test results and said it isn’t Celiac’s, we don’t know

what it is. My father thinks it might be a fungus if it is not Celiac’s.

The diets are more restricted but not for life I guess. Has anyone had

this happen? I also am curious in case my bf’s results are negative

for CD.

Thank you

JudyLynn

www.tomatothyme.com

My little plot of the earth ) Enjoy!

(always being updated)

From: SillyYaks [mailto:SillyYaks ] On Behalf Of K. Oland

Sent: Monday, February 20, 2006

4:29 PM

To: SillyYaks

Subject: RE: Can't

believe I'm doing this

Current medical standards are NO repeat biopsies and NO gluten

challenges,

once a diagnosis occurs. Repeat blood tests at 6

months and annually

thereafter are to check for diet compliance.

Only if you have continued symptoms and NEGATIVE

antibodies would another

biopsy be needed (to find what ELSE you have

wrong).

-----Original Message-----

LOL I had my endoscopy last Friday, I hate them so

much, but you right, it

is much better than eating gluten : / My

throat still hurts a week after

the procedure! I don't think I am a wuss but

it is annoying. I do use this

opportunity to eat lots of popsicles though ;p

Now, I am new to the diet, and had my endoscopy so

I went back on the diet,

my question is why do we have to have more

endoscopies? Do they have to see

if we are getting better? In my mind I think

well, they told me I have CD,

the diet works, I am happy, why do I have to go

through that gluten

nightmare to have the test done again.

---