Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

Rachel--24

Omg...i Might Be On To Something

Recommended Posts

I wanted to encourage all of you to send out that petition to friends to be signed. Even those who don't have Lyme are certainly at risk and would want treatment available.

I would like to encourage this as well.....I'm having everyone I know sign it.


Rachel

Share this post


Link to post
Share on other sites
Andrea, Chloe tested positive with Enterolab. We are going to be doing a gluten challenge with her over Christmas break. We had not seen the improvement with her that we had expected to see, so now that she's been gluten-free for a few months, it's a good time to challenge it. She never had the biopsy.

I may have confused you because sometimes I say celiac instead of gluten intolerance, which is more accurate for Chloe and I.

Ok, I can see why you would think she is most likely to have lyme. It is a definate possibility. She sounds like she feels like my daughter about blood draws.

Are you thinking of getting her tested?

My family all had low numbers with enterolab but we all have at least one celiac gene so we will remain gluten free.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites
by the way, how long did it take everyone's results to come in?

Two weeks for me but the lab is right by my Dr.'s office....it might have made things a little quicker.


Rachel

Share this post


Link to post
Share on other sites

I'm going to wait and see what the doc in NY says. With Chloe's learning disabilities, which aren't easy to pin down, I'm thinking she might have Lyme brain. I thought she had gluten brain, but it didn't make a difference.

Morgan is sensitive to gluten, it makes her have seasonal allergies. Maybe it's not a true intolerance, but just something complicated enough for a person to handle that it pushes her over the edge with the allergies. I don't know ... maybe she has Lyme, too. Actually, they all could, except for Jack, who was adopted.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites

Carla,

It would be smart to get the kids tested. The LLMD should be able to tell you how to proceed. I think they could all have it if you had Lyme during all of your pregnancies. I think eventually something could tip the scales and one of the kids could start developing symptoms. It sucks to think about it....but at least you will know what it is and how to deal with it...if something like this ever happened.

I'm curious about what the LLMD will say about this.


Rachel

Share this post


Link to post
Share on other sites
I'm curious about what the LLMD will say about this.

Me too.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites

..signed the petition :)

CARLA!!! OMG another member of the Lyme clan??? :o

I'm glad you finally have an answer..but ,gosh, how long doyou think you've had it??

...and the kids need testing?? :unsure:


It's not enough that we do our best; sometimes we have to do what's required - Sir Winston Churchill

Nikki

Son diagnosed with Coeliac Disease Oct 2006 by biopsy (at age 13yrs)

black_cat.gif

Share this post


Link to post
Share on other sites

Just flying through:

Carla, omg!!! Congratulations on the diagnosis, I am thrilled for you. You finally have answers to what you have been fighting with all these years, what validation! Now you can start your journey to getting better!

Rachel, I really can't thank you enough for posting about getting your body temp up and keeping warm. My temp always bottoms out, but sometimes I forget about it, your posts reminded me to be conscious of that and to take measures to get my temps up and stay warm :D:D:D

Andrea, sorry about Seth and the bump on his head :( Hope it gets better soon.

I have a bioscan appt tomorrow so hopefully I will have something to report about my lyme testing perdicament, fingers crossed.

Hope everyone has a great day!!!

:wub:

Share this post


Link to post
Share on other sites
I have a bioscan appt tomorrow so hopefully I will have something to report about my lyme testing perdicament, fingers crossed.

Looking forward to an update tomorrow. :D


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites

I had the complete Lyme panel done ... don't remember the number.

I'm wondering about the kids, too. Someone asked how long ... I believe since 1972-1975 -- it fits with the onset of the symptoms and the exposure to massive quantities of ticks. So, I would have had it before any of my pregnancies. I am curious what the doc would say because if antibiotics cannot get rid of all the bacteria and if they are not having symptoms, it doesn't seem that they would need treatment at this time, but it's a good thing to know for the future. I think Chloe will probably need treatment ... I'm betting her learning disability -- which is something they can't really pinpoint -- is probably Lyme brain. If her brain works half as bad as mine, I can see why she's having problems. Good thing I started out smart! :P


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites
carla...you prob also had the 6050 http://www.igenex.com/formset4.htm

Yes, that's it.

That would be nice, if you knew before Christmas. IGeneX sent me a paper saying they got it on the 16th, then it was done on the 30th, so after exactly two weeks, have your doctor call and ask them to fax the results.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites
I had my appt with my doc today....um....yeah........ ;) He was old, disorganized, slow, confused.....I was there for SIX HOURS including 30 min to fill out paperwork, 1 hour to wait (appt was at 1030, i wasn't seen til like 1140), then took over 2 hours for them to figure out what bloodwork and tests were needed and then took 10 vials of blood, have to back in later this week to pick up more tests and go back next week for more blood, and then they couldn't figure out the billing. It was like the never ending day from HELL!

Was this your LLMD??? :blink: Could you PM me your location?


Negative biopsy for celiac 1980

Fibromyalgia 1980

IBS 1980

Interstitial Cystitis 1992

Systemic yeast

Diagnosed w/ Chronic Lyme Disease 2000

Diagnosed w/ Chronic babesia 2000

Tachycardia 2001

Asthma 2005

Have had Lyme and babesia for

about 48 yrs.

Began gluten-free July 19 '06

Native TEXAN living in Missouri

Share this post


Link to post
Share on other sites

Okay so I haven't had time to go back and read...someone please keep cliff notes for me for when I get home!!! Please...I'm on my friends dollar, so can't spend a lot of time here...but from what I scanned on this page CARLA HAS A DIAGNOSIS!!??!!! Wow!!! Incredible. Speechless!

Just logged on to say greetings from Costa Rica...actually we set sail a while ago, so we're back in the Caribbean sea somewhere on our way to Grand Cayman. We went through the Panama Canal (partial) yesterday...it was great!

Okay, gotta go. Miss you girls and guys!

Share this post


Link to post
Share on other sites
OMG--I hope Donna's alright! Did any of you see this? She's in the Caribbean, too.

http://news.yahoo.com/s/ap/20061204/ap_on_.../sick_cruise_10

There's gotta be more than one ship there--right? :unsure:

Okay so I'm randomly scanning pages here and there for a few more minutes, lol, and came across this. Patti, thanks for caring!!! They are being SOOOOOO very diligent on board about this very tbing. All passengers have to use a hand sanitizer BEFORE coming on board, BEFORE entering the restaurants and buffet and just about every other public place. This is the strictest I've ever seen it--wasn't like this on my other two cruises, but this time they follow people and MAKE them use it, lol. My friend and I are pretty diligent about using sanitizing wipes anyway, but I'm happy to see this.

Share this post


Link to post
Share on other sites

Donna,

So glad you are safe and having a good time. :D

Can't wait until you get home, but it sure is nice of you to drop in. :)


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites

I'm back from Bioset. My appt. went well....it was a much longer appt. because she had to retest everything.

I have alot to share but I'm WAY tired right now. I think I might go to bed soon. -_-


Rachel

Share this post


Link to post
Share on other sites

Rachel,

We'll be waiting for your post when you are rested and able to post about it.

:wub:


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites
Guest
This topic is now closed to further replies.