Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Rachel--24 Collaborator

I think I might go pick up my Samento now. I'm scared to start taking it though. :ph34r:

At least if I buy it I can take it to BioSET tomorrow and have them test the real thing to make sure I can have it. I dont wanna get sick right before Xmas.....and I dont want to be wondering if its a Herx or just a reaction to the stuff. <_<


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Rachel--24 Collaborator
I have an Orek upright with an anti-allergen bag -- the permanent bag is the one that traps the allergens, so you just get regular bags for inside. They're expensive, but I really like it. It comes with a second more portable vacuum, and a dust-buster, so you have all the vacuum cleaners you need with just one purchase! :lol: Expensive though.

I have one of those "bagless" ones. The dust and dirt just goes into a plastic thingy and you dump it out. I think I just need to replace filters....but where the heck do I get them??? :unsure:

CarlaB Enthusiast
I have one of those "bagless" ones. The dust and dirt just goes into a plastic thingy and you dump it out. I think I just need to replace filters....but where the heck do I get them??? :unsure:

My upright came with one of those. I like it. I get the filters and bags for the other ones at the Oreck store. I think that's the only place that sells them.

AndreaB Contributor
I asked about whether the results of my stool testing were in, and they were, but they won't tell you like that, you have to speak to one of the doctors...I'll do that on Wednesday. I do know that whatever they found needs a prescription, cuz they mentioned that one was already written. :( Hoping it's not C.Diff, but also not sure if I want any of the other parasites/bacteria either. Not really sure if any others can be fixed by prescription, Candida maybe??

Friday I will be re-evaluated for the chiropractic/physical therapy stuff to see if there is any improvement (um, my best guess, NO, lol). Preparing myself for the :huh: look I'll get when I reemphasize the mercury/lyme thing. :lol:

I'll be waiting for more news from you this week Donna.

I think you'll get that look also. :P

Judy - take your time about posting, but hurry up okay, lol. :lol: Just kidding, sort of. :P

:lol::lol: I agree.

Is everyone ready for Christmas??

I'm considered a very early shopper for the most part. I get most of it done in Sep/Oct.

I did this to a dog that lifted his leg on a chair ... only it was more of a castration ... from then on my hubby would tell people, "You'd better not make her mad, you should see what she did to the dog!"

:lol::lol::lol:

I had my blood taken for the coinfections today. She had the seal break on the blood container -- TWICE! So the other nurse came in and took it from the other arm. HEINOUS!

Uggghhhh! I hope you recover from that quickly. I also hope you are feeling better. How long before you know about the co-infections....2-3 weeks?

I think I might go pick up my Samento now. I'm scared to start taking it though. :ph34r:

At least if I buy it I can take it to BioSET tomorrow and have them test the real thing to make sure I can have it. I dont wanna get sick right before Xmas.....and I dont want to be wondering if its a Herx or just a reaction to the stuff. <_<

What about waiting to start it until after Christmas.

CarlaB Enthusiast

Yes, two or three weeks. Just so long as it's before my doctor appt. in January is all that really matters!

I asked the nurse if they reported my Lyme to the CDC. The nurse said the doctor had some questions for the lab first ... who knows why she hasn't called them yet ... I asked what the questions were, and she said she didn't really know but the doc wasn't sure if it was an active infection or antibodies from a past infection. I told her that the doc must be questioning because the Igg was raised not the Igm. She said that was the reason ... I told her it didn't matter with Lyme which it was, that you have Lyme either way, that Lyme was somehow different than other infections. I don't know why she hasn't called the lab yet.

Rachel--24 Collaborator

I got the cats claw.....it says right on the box "Herxheimer's reaction may occur". It says sensitive individuals may have to stay on one drop per day for a period of time...then gradually increase. Well....thats me. I guess I'll be taking one drop...and probably feeling like death from it. :(

I'm definately waiting till after Xmas to start on it. I'm scared. :ph34r:

Rinne....did you herx from the cats claw?? How many drops do you take??

What do you guys think.....if I start herxing should I redo the Western Blots?? Anyone think that the cats claw is strong enough???

CarlaB Enthusiast
What do you guys think.....if I start herxing should I redo the Western Blots?? Anyone think that the cats claw is strong enough???

I don't know. As much as they cost, I'd probably try the antibiotics to be SURE they are right. I hope my samento comes soon ... I had to order it!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Mango04 Enthusiast

Hi everyone. I'm back in the US. I was away from the board for a while and now suddenly everything's different :unsure: I'm too tired and lazy to figure it all out right now but it kind of looks like myspace with friends and comments and what not lol how weird. I'll have to stop by again when I'm more awake to read and catch up with everyone. It's just too exciting that it's Monday here where I am AND where you all are (except I just saw Georgie here so almost all of you lol).

ps sorry for the pop in/drive by that has nothing to do with what's being talked about. I guess I've done lots of those lately lol

Oh and I'm not the koala but I can't figure out how to change the caption. Okay I'm really leaving now :)

AndreaB Contributor

Hey Meredith!

Good to see you!!!

Actually it's Monday today. :)

Get some sleep and come back to learn the new board after you catch up from jet lag etc.

Mango04 Enthusiast
Actually it's Monday today. :)

.

:lol: Yeah I caught that. Well it was summer two days ago for me so I'm just really confused :blink::lol:

AndreaB Contributor
:lol: Yeah I caught that. Well it was summer two days ago for me so I'm just really confused :blink::lol:

:lol::blink:

Isn't is warm in California? I know, it's not for you but it would be for us.

After you get some rest you'll have to fill us in on your avatar. Beautiful picture.

That koala looks pretty human to me. :P:lol:

Judyin Philly Enthusiast

QUOTE(dlp252 @ Dec 18 2006, 02:42 PM)

Judy - take your time about posting, but hurry up okay, lol. Just kidding, sort of.

I agree. QUOTE(Rachel--24 @ Dec 18 2006, 03:33 PM)

Is everyone ready for Christmas??

NO NO NO NO NO NO ! I'M NOT..MAYBE I'LL CELEBRATE IT IN AUGUST.

Thanks guys.

Could feel the strength from all of you today.

I want to post when i feel like I'm emotionally stronger.

The apt was ..can't even think of the word for it

too much history that i didn't even share earlier..basically i'm back to square one.

referal to see a dermatologist...who knows how long that will take TO GET IN . He thinks it will be hard to get rid of..a fungal infection..the white stuff i can scrap off is dead skin???

Want's a total new work up with GI ..a newGI DR. MY CHOICE TOO...don't know her..scope, colonoscopy, etc nothing about testing for more answers with celiac..he wants to rule out cancer...of course he does,, but it's celiac and all that means.

" said since I'm not 100% better on celiac diet, there are other things going on."

Going to bed with the pump and call it day and try not to think about everything..17 months gluten-free and he's suggesting a gluten challange that's when i kinda felt i needed some time off from thinking. SAID "if i do that i'll be in bed for weeks."

love and thanks for all your info. didn't need it today as NONEof those issues were discussed.

omg i'm tired.

love you guys.

it's wonderful to be able to count on you all.

Judy

AndreaB Contributor

Judy,

How totally frusterating! I hope you can get a good nights sleep. We'll talk to you tomorrow.

Judyin Philly Enthusiast

Andrea, how sweet.

yep, it was.

worked on Christmas cards till 3:00 am and woke up at 6:00...guess that's 3 hrs sleep.

Cleaning lady. (don't begrudge me, ladies..at 65, it's always been my dream to have the little 'pixies' or faries come and clean while I sleep, well guess at my age it's ok, right?) she hadn't been here for 3 months then came andour company left on the 10th and now getting guest b/room ready for son again. In a 2 b/room cape cod with 3 frigging closets it's like a major move (out and into ) everytime there is company. She's retired and only comes to me..so i'm blessed to have her..we start out with coffee and catch up chatting then I clean along with her (in other rooms..like a tornado before she hits the next room) remember my favorit motto...' CREATIVE WOMEN HAVE COBWEBS IN THEIR CORNERS, NOT IN THEIR MINDS.' AND MY house reflects my motto. :lol: See I'm smiling this am...no worries friends.

judy

dlp252 Apprentice
Is everyone ready for Christmas??

NO!!! :lol: I don't even know if my family is exchanging gifts this year. I suppose I really SHOULD ask my mom, lol. I figure I'll go out and get some gift cards or something. I haven't had any energy to even THINK about it much less do it, and same here with the medical expenses and vacation expenses. :(

dlp252 Apprentice
I did this to a dog that lifted his leg on a chair ... only it was more of a castration ... from then on my hubby would tell people, "You'd better not make her mad, you should see what she did to the dog!"

:o

dlp252 Apprentice
I had my blood taken for the coinfections today. She had the seal break on the blood container -- TWICE! So the other nurse came in and took it from the other arm. HEINOUS!

:o:o

dlp252 Apprentice

Wow Judy, the appointment really does sound frustrating, but I'm glad you are in good spirits today!

Andrea, we weannies in California can't take this current cold spell...it's been below freezing at night, burrrrrr, lol. I was so cold all day yesterday...had on a long sleeve tee-shirt, a sweatshirt over that, and a blanket and was still shivering on the couch.

Rachel - good luck with the cat's claw...I'd be scared too.

Welcome back Mango!!!!

I'm home from work again today...still have ZERO energy and a sore throat. I sound like I have a cold, but my nose is not congested or stuffy, so I don't know what's going on. I may see if one of my doctors can test for strep throat today...don't know though. I woke up at 2:00 because of the throat and couldn't get back to sleep.

happygirl Collaborator

Judy, apparently your doc and some of my docs must be buddies...suggesting the gluten challenge! we KNOW gluten is a problem....I don't care what you want to call it....celiac, gluten intolerance, gluten allergy...

jerseyangel Proficient

Judy,

I think Laura's right about the gluten challenge. Why test something we already know the answer to? :huh: You have bigger issues to address ;)

Donna,

I'm sorry you are still sick today. I was wondering about you, hoping you felt better and were posting from work. Get lots of rest, and let us know :)

Hi to everyone!

I made like a million christmas cookies yesterday..Worked on them all day--and they look and taste wonderful. I used rice flour and for the frosting, confectioner's sugar (cornstarch). I even colored my own sugar to avoid CC.

This morning, my stomach was not happy--I don't ever eat rice more than once a week, and have been avoiding corn. I guess the 10 or so cookies were a bit too much to handle :P

The good news is that my husband said they're the best ones he's ever had. At least the guys can enjoy them.... :lol:

AndreaB Contributor

Judy,

I agree with the nonsense of a gluten challenge. Don't you get sick when you get glutened? That's your answer then.

Donna,

I hope you can get your test today. :( Keep us posted. Glad to have you back. :)

Patti,

I hope this doesn't leave you down long. I would be mourning not eating all the goodies you've taken the time to bake.

jerseyangel Proficient

Hi Andrea :D

Naw--I'm fine. The stomach stuff is over and I'm pretty used to not being able to eat what I'd really like to.

The important thing is that the guys will enjoy everything--that makes me really happy!

Rachel--24 Collaborator
He thinks it will be hard to get rid of..a fungal infection..the white stuff i can scrap off is dead skin???

Judy,

They need to figure out *why* you're getting fungal infections, candida, etc. It happens when the immune system is run down. What is the point of the gluten challenge??? To make you feel worse and drag your immune system down even further??? :blink:

"said since I'm not 100% better on celiac diet, there are other things going on."

I agree...but why go BACK on gluten and REVERSE the healing you've already done?? :huh:

angst2amity Rookie

I wanted to check in...

No Lyme antibodies. No neutrophils. High Glucose count in Cerebral Spinal Fluid. What the heck? I know it probably wasn't Igenex but I don't know anything or what direction to even take. It is very frusterating to be a medical zebra.

Boo Hoo

Rachel--24 Collaborator

Angst,

If you suspect you might have Lyme you should see a Dr. who specializes in Lyme Disease. The tests arent very sensitive at all. Igenix has the most sensitive test.

LD is frequently misdiagnosed. Physicians frequently overlook cases of Lyme disease simply because they don

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,311
    • Most Online (within 30 mins)
      7,748

    SWilson
    Newest Member
    SWilson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Cathijean90! I went 13 years from the first laboratory evidence of celiac disease onset before I was diagnosed. But there were symptoms of celiac disease many years before that like a lot of gas. The first laboratory evidence was a rejected Red Cross blood donation because of elevated liver enzymes. They assume you have hepatitis if your liver enzymes are elevated. But I was checked for all varieties of hepatitis and that wasn't it. Liver enzymes continued to slowly creep up for another 13 years and my PCP tested me for a lot of stuff and it was all negative. He ran out of ideas. By that time, iron stores were dropping as was albumin and total protein. Finally, I took it upon myself to schedule an appointment with a GI doc and the first thing he did was test me for celiac disease. I was positive of course. After three months of gluten free eating the liver enzymes were back in normal range. That was back in about 1992. Your story and mine are more typical than not. I think the average time to diagnosis from the onset of symptoms and initial investigation into causes for symptom is about 10 years. Things are improving as there is more general awareness in the medical community about celiac disease than there used to be years ago. The risk of small bowel lymphoma in the celiac population is 4x that of the general population. That's the bad news is.  The good news is, it's still pretty rare as a whole. Yes, absolutely! You can expect substantial healing even after all these years if you begin to observe a strict gluten free diet. Take heart! But I have one question. What exactly did the paperwork from 15 years ago say about your having celiac disease? Was it a test result? Was it an official diagnosis? Can you share the specifics please? If you have any celiac blood antibody test results could you post them, along with the reference ranges for each test? Did you have an endoscopy/biopsy to confirm the blood test results?
    • Cathijean90
      I’ve just learned that I had been diagnosed with celiac and didn’t even know. I found it on paperwork from 15 years ago. No idea how this was missed by every doctor I’ve seen after the fact. I’m sitting here in tears because I have really awful symptoms that have been pushed off for years onto other medical conditions. My teeth are now ruined from vomiting, I have horrible rashes on my hands, I’ve lost a lot of weight, I’m always in pain, I haven’t had a period in about 8-9 months. I’m so scared. I have children and I saw it can cause cancer, infertility, heart and liver problems😭 I’ve been in my room crying for the last 20minutes praying. This going untreated for so long has me feeling like I’m ruined and it’s going to take me away from my babies. I found this site googling and I don’t know really what has me posting this besides wanting to hear from others that went a long time with symptoms but still didn’t know to quit gluten. I’m quitting today, I won’t touch gluten ever again and I’m making an appointment somewhere to get checked for everything that could be damaged. Is this an automatic sentence for cancer and heart/liver damage after all these symptoms and years? Is there still a good chance that quitting gluten and being proactive from here on out that I’ll be okay? That I could still heal myself and possibly have more children? Has anyone had it left untreated for this amount of time and not had cancer, heart, fertility issues or liver problems that couldn’t be fixed? I’m sure I sound insane but my anxiety is through the roof. I don’t wanna die 😭 I don’t want something taking me from my babies. I’d gladly take anyone’s advice or hear your story of how long you had it before being diagnosed and if you’re still okay? 
    • trents
      Genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and also to establish the potential to develop celiac disease. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% actually develop it. To develop celiac disease when you have the genetic potential also requires some kind of trigger to turn the latent genes "on", as it were. The trigger can be a lot of things and is the big mystery component of the celiac disease puzzle at this point in time with regard to the state of our knowledge.  Your IGA serum score would seem to indicate you are not IGA deficient and your tTG-IGA score looks to be in the normal range but in the future please include the reference ranges for negative vs. positive because different labs used different reference ranges. There is no industry standard.
    • Scott Adams
      Since nearly 40% of the population have the genes for celiac disease, but only ~1% end up getting it, a genetic test will only tell you that it is possible that you could one day get celiac disease, it would not be able to tell whether you currently have it or not.
    • KDeL
      so much to it.  the genetic testing will help if i don’t have it right? If theres no gene found then I definitely don’t have celiac?  I guess genetic testing, plus ruling out h.pylori, plus gluten challenge will be a good way to confirm yes or no for celiac. 
×
×
  • Create New...