Jump to content
  • 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

CarlaB Enthusiast

Looks like I have Kassandra for another day. :P I'm glad the airline called to cancel before we left to go to the airport! She's supposed to fly out at 2:30 tomorrow, but I'm betting that she'll need to take a later flight than that! The heavy snow isn't supposed to start till tonight .... but the kids got out of school early.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
tabasco32 Apprentice
Thanks! Hate it when I have really vivid dreams at night then feel disoriented for the first few hours after waking up. It's like I didn't come all the way back.

Yeah

Same thing happened to me on Sunday after church. Real bad, bad vivid nighmare. It was either too much chocolate or this meditation compact disc that did it. It was crackling trees and you know that scarey sound when the wind blows hard?

That same sound was in my nightmare. Then I woke up to the same sound :o Dumb scarey compact disc. Need to throw it out. I wake up feeling so unrefreshed with heavy eyelids. Still sleepy but too chicken to go back to sleep for fear of another nightmare.

I'm just a wussy like that though.

Nyxie63 Apprentice

Andrea,

I'm trying! :)

Susie,

Yeah, I'm glad the buggies are dying off. Think it's part of my OCD to know the "why" of everything.

Julie,

The hida scan is to check gallbladder function. I've had the same pain for 3 months now, non-stop, but they can't find any stones or sludge. Which leaves either a functional problem or it's not the gallbladder.

They give you either something high fat to eat or inject you with something called CCK. It's supposed to make your gallbladder contract and they can measure the amount of bile that's released. Anything below a 35% ejection fraction is bad.

I think it's the Nystatin and subsequent yeast die-off that's causing the dreams. Ended up taking a 3-hour nap this afternoon and had vivid funky dreams again. Not bad, just funky.

I have 2 refills on the script for Nystatin so it looks like I'm going to be taking it for 3 months, unless otherwise told to stop. Have also gone back to the candida diet. Cheated a bit the last couple of weeks. It was kind of a last hurrah before having to start abx.

Lisa,

Maybe it's time to switch to a chirping crickets compact disc? I'd recommend the sound of water but if you're like me, it'll just make you have to pee all the time. The scary wind/trees sound doesn't seem all that relaxing. Wonder what they were thinking putting it on a meditation compact disc?

Everyone,

Well, something's working. My body's been eliminating like crazy today. Peeing every 90 minutes to 2 hours. Of course, I'm drinking lots too. Feeling a bit headachy and tired, but otherwise ok. Had to stop and sit down twice to rest while making dinner. Hubby handled the dishes..... well, at least he took them back into the kitchen and put them in the sink. :D

Anyone seen Jin lately?

ShadowSwallow Newbie

I've also been wondering where Jin is, Nyxie. Glad to hear that you're responding to the meds! :D:D

Kassandra,

I hope you get back in time for your appointment!

Everyone,

I had an appointment with the GI dr today. He talks a bit too much, and doesn't really listen, but I like him anyway. ;) He says that the biopsy from my endoscopy doesn't indicate that I have Celiac Disease, and that the only way to know for certain is to do a gluten challenge. He said that since I have a positive response to the gluten-free diet he doesn't see any point in making me feel bad just to prove that I had this disease. Woohoo! :lol: :lol: :D :D :D

He also said that for the EE (only treatment is steroids--specifically Flovent) that I don't need to take it until I become symptomatic, and then it will only be necessary to take for 3 months, and I would need to take that before I have another endoscopy. So that's good.

The only problem is going in for the h.pylori breath test I need to be off abx for 3 weeks. Unfortunately my Mom doesn't see any problem with that for my Lyme treatment. So at this point I think I'm just going to take the Avalox after I'm done with these herbs and then get tested after I'm done with the Lyme. It will put it off a lot, but determining whether or not I have effectively treated that is far less important than the Lyme.

Also, the weirdest thing happened to me two days ago. It was 3am and I woke up feeling like I was in a sauna, so I went downstairs and checked the thermostat and it was 66 F. And for the past few weeks I've been freezing and having a difficult time keeping my body temp up. :blink:

Birdy

AndreaB Contributor
Anyone seen Jin lately?

She's emailed within the last week.

I don't know when she's going to be posting her column. She's been on lyme chat or lyme net alot.

NoGluGirl Contributor

Dear Everyone,

I am still here reading along! As Andrea said, I have corresponded with a couple of you. Most of my time has been spent on Lyme chat lately. My makeover will resume next Wednesday. I will be posting my column sometime late this evening. Meanwhile, I am going to head upstairs and take my memory notes!

Sincerely,

Jin

P.S. I miss being on here! I need to desperately find a balance between everything!

AndreaB Contributor
I need to desperately find a balance between everything!

What's balance? :lol::P:lol::D


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



Celiac.com Sponsor (A8-M):



confusedks Enthusiast
Kassandra,

I hope you get back in time for your appointment!

Thanks. I do too. ;)

Why don't you call your LLMD and ask what he thinks of you going off the abx? He might think its worth it and he might not.

NoGluGirl Contributor

Dear Andrea,

He he! Balance is something that is supposed to be like equilibrium. Is it really possible to obtain? I wonder. How come we cannot have one day per week with an extra hour? They must save it for leap years. I feel so screwed out of time right now! Leap Day was last week.

Dear Kassandra,

I agree checking with her doctor is a good option. You do not want to do anything without asking. Even herbs need to be used carefully. Meanwhile, I am going to try and gather my notes for my really long typing session tonight. That post is going to be epic! I will try and respond as briefly as possible to everything, but brevity has never been a strong suit of mine.

Sincerely,

Jin

P.S. I see you Sarah aka Ridgewalker! How are you?

Ridgewalker Contributor
Sincerely,

Jin

P.S. I see you Sarah aka Ridgewalker! How are you?

:D Hey Jin. Battling flu right now. I'll be back in later tho. Have some more candida questions for you guys. My mom's been backsliding pretty badly. :(

confused Community Regular

Julie,

I am really thinking about buying the book, my poor hubby said i have become ocd about everything now, make-up first, then exercise equipment and now books lol. I am actually going to the bookstore today and see if they have it lol, if i can beat the snow.

Who here has the Ro water, i had to look it up lol. I told hubby about it and he knew all about it, boy did i feel dumb lol. The water here is so bad i think it would be wise for us, I do have an filter on the fridge and an pur water filter on the sink, but im wondering if that is enough.

paula

confusedks Enthusiast

It looks like I might not make it back to LA. :( I am still stuck here and my flight was cancelled...ugh! They haven't rescheduled my flight yet. I'm determined to make it back to LA! :lol: LOL! (I am thinking I will be able to control the weather...haha! :lol:;) )

CarlaB Enthusiast
Who here has the Ro water, i had to look it up lol. I told hubby about it and he knew all about it, boy did i feel dumb lol. The water here is so bad i think it would be wise for us, I do have an filter on the fridge and an pur water filter on the sink, but im wondering if that is enough.

paula

We have RO in the kitchen sink. It triple filters, so gets much more out than a fridge/pur filter. I think the fridge/pur gets the chlorine out, but the RO gets everything out.

We also have a whole house filter, so our showers have no chlorine. :) It doesn't purify to the level of the RO.

It looks like I might not make it back to LA. :( I am still stuck here and my flight was cancelled...ugh! They haven't rescheduled my flight yet. I'm determined to make it back to LA! :lol: LOL! (I am thinking I will be able to control the weather...haha! :lol:;) )

Yeah, we're pretty snowed in. When I heard it was coming, I bought several days of gluten-free food, LOL. It is beautiful though.

Green12 Enthusiast
Think it's part of my OCD to know the "why" of everything.

The hida scan is to check gallbladder function.

I have 2 refills on the script for Nystatin so it looks like I'm going to be taking it for 3 months, unless otherwise told to stop. Have also gone back to the candida diet. Cheated a bit the last couple of weeks. It was kind of a last hurrah before having to start abx.

Well, something's working. My body's been eliminating like crazy today. Peeing every 90 minutes to 2 hours. Of course, I'm drinking lots too. Feeling a bit headachy and tired, but otherwise ok.

Nyxie,

Nothing wrong with wanting to know the "why" of everything :P:lol: That really could be the motto, or at least one og them, of the OMG thread.

Thanks for explaining the hida scan, I've never heard of that. Hope it gives you some answers.

Good luck with the Nystatin, hope the 3 months will fast :lol:

The candida diet will help eliminate some of those problematic foods that burden our bodies and detox processes.

I had an appointment with the GI dr today. He said that since I have a positive response to the gluten-free diet he doesn't see any point in making me feel bad just to prove that I had this disease. Woohoo! :lol: :lol: :D :D :D

Also, the weirdest thing happened to me two days ago. It was 3am and I woke up feeling like I was in a sauna, so I went downstairs and checked the thermostat and it was 66 F. And for the past few weeks I've been freezing and having a difficult time keeping my body temp up. :blink:

Hey Birdy, glad you checked in :)

Yay on not having to do a gluten chalenge!

I had extreme temp changes for the longest time, it's since normalized although i am not sure why. I think for me circulation has improved so maybe that is it :huh:

Balance is something that is supposed to be like equilibrium. Is it really possible to obtain?

Meanwhile, I am going to try and gather my notes for my really long typing session tonight. That post is going to be epic! I will try and respond as briefly as possible to everything, but brevity has never been a strong suit of mine.

Good to see you Jin :D

I truly believe balance can be obtained.

I give you permission, I am sure everyone gives you permission, to let go of the task of replying to everything and everyone. I know you have the best intentions at heart, but it is too overwhelming for anyone to accomplish.

Battling flu right now. I'll be back in later tho. Have some more candida questions for you guys. My mom's been backsliding pretty badly. :(

Sarah :(

Hope you feel better soon.

I am really thinking about buying the book, my poor hubby said I have become ocd about everything now, make-up first, then exercise equipment and now books lol. I am actually going to the bookstore today and see if they have it lol, if i can beat the snow.

Who here has the Ro water.

:lol: Paula

Let me know if you find the book and if its worth getting.

I have a RO filter on the kitchen sink, I got it through MultiPure over 10 years ago, then I just buy replacement filters every 6 months or so.

Open Original Shared Link

I have the unit that is shown in the picture there, a carpenter just drilled a hole in the sink, then the filter is attached under the sink. They also have countertop units.

I am looking into getting a shower filters as well, and the whole house.

It looks like I might not make it back to LA. :( I am still stuck here and my flight was cancelled...ugh! They haven't rescheduled my flight yet. I'm determined to make it back to LA! :lol: LOL! (I am thinking I will be able to control the weather...haha! :lol:;) )

:o Oh no! Sorry your flight was cancelled, hope you are able to get out soon.

Yeah, we're pretty snowed in. When I heard it was coming, I bought several days of gluten-free food, LOL. It is beautiful though.

Sounds like she might not get out then for a while?

Take a picture of the beautiful snow!

Nyxie63 Apprentice

Bleah! Nothing sounds good and I have to eat in order to take my meds. Not really hungry anyway.

Any suggestions?

Oh, and could have killed hubby yesterday. He brought home one of my absolute pre-intolerance goodies. Cherry cheese coffe cake. Arrrrggghhh! I'm being a good girl. *sigh*

Green12 Enthusiast
Bleah! Nothing sounds good and I have to eat in order to take my meds. Not really hungry anyway.

Any suggestions?

Oh, and could have killed hubby yesterday. He brought home one of my absolute pre-intolerance goodies. Cherry cheese coffe cake. Arrrrggghhh! I'm being a good girl. *sigh*

:o about the coffee cake, be strong!

Are you eating for candida, or do your meds have specific requirements like fat?

Nyxie63 Apprentice

I'm eating for candida.

Not on mepron so no need for fat. Can't eat high fat anyway because of the abdominal pain.

CarlaB Enthusiast
:o Oh no! Sorry your flight was cancelled, hope you are able to get out soon.

Sounds like she might not get out then for a while?

Take a picture of the beautiful snow!

Well, the Dayton airport is closed until Monday, so she pulled the "doctor's appt. trump card", which, of course, was true, and they flew her out of Cincinnati. We had about 6 inches of snow ON THE FREEWAY, but once we got further south, the roads were a lot clearer. Then coming back up north, they were still snowy.

So, just a little south of us there was less snow.

This is our first blizzard since 1978 (which was much worse than this). Very unusual weather for March, especially since we weren't even wearing coats a few days ago when it was about 70.

Bleah! Nothing sounds good and I have to eat in order to take my meds. Not really hungry anyway.

Any suggestions?

Oh, and could have killed hubby yesterday. He brought home one of my absolute pre-intolerance goodies. Cherry cheese coffe cake. Arrrrggghhh! I'm being a good girl. *sigh*

I always had appetite problems ..... thus my love of smoothies! Also, the undenatured whey protein is good for helping to detox. I use Biochem vanilla or chocolate whey, water, and frozen fruit (berries are low in sugar).

tabasco32 Apprentice

Hi everyone

Glad to see you all. How is everyone? Here I'm at the library. I'ts very quiet here today. No usual for a library in Fresno County. Not feeling sssooo tock sick today which is good. But I also cut down big time on ice cream. Well times almost up

Nyxie63 Apprentice

Carla,

Glad you made it back safely from the airport. Hopefully, we'll hear from Kass soon.

Can you have whey if you're casein intolerant? I've never been able to figure that out.

CarlaB Enthusiast
Can you have whey if you're casein intolerant? I've never been able to figure that out.

I don't think so.

Kassandra's plane isn't expected to land in LA until 10:30 LA time. I know she was late taking off .... unless they hold her connecting flight, she will have missed it, so she might be really late. I don't expect we'll hear from her till tomorrow. She had two layovers because they had to reroute her.

Rachel--24 Collaborator

Hi everyone. :D

I cant possibly reply to all that I'd like to...so I'll just jump in. :P

I've been reading along during my lunch breaks so at least I'm not totally "lost".

Kassandra and Carla....thats so cool that you two got to spend some time together.

Lisa, I love reading reading your posts...they always make me smile. It seems to me that you're doing better these days. :)

Donna....yup...that was an accurate description of ART and BioSET (several pages back)....I would have explained it the same way.

AndreaB Contributor
Kassandra's plane isn't expected to land in LA until 10:30 LA time. I know she was late taking off .... unless they hold her connecting flight, she will have missed it, so she might be really late. I don't expect we'll hear from her till tomorrow. She had two layovers because they had to reroute her.

Poor Kassandra. :( Layovers are a pain, especially if the med's are throwing her for a loop. I'm sure she'll be exhausted. What time is her appointment.....do you know?

Glad you got out and home safely. Why did I think you were in Indiana?

AndreaB Contributor
Hi everyone. :D

Hi back to you! :D

CarlaB Enthusiast

Andrea, I used to live in Indiana, we moved here two years ago .... remember, I stayed back with Morgan in Indiana until she graduated?

She changed her appt. to 1:30, so she should be able to make it.

She was doing REALLY well when she was here. She had been off meds for a few days, but even when she started them back up she did well, though I could tell she was more tired than before. I think she'll do fine with the flight .... but I bet she'll be resting when she gets home!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Xravith
      Yes, you are right. Indeed, I’ve been feeling anemic since the beginning of this week, and today I felt horrible during a lecture at the university, I was trembling a lot and felt all my body incredibly heavy, so I had to come back home. I’ll do a blood test tomorrow, but I’m just worried about the possibility of it coming back negative. I’ve been eating two cookies in the morning as my only source of gluten over the past two weeks—could that affect the final result?
    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.