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

CarlaB Enthusiast
I was just wondering how much sleep does everyone get. Like hat time do u usually go to bed and what time do you get up, When I read that carla gets up at 10, it made me think of this.

Well, I get up at 10, but if you read the time on my posts, you know I am awake at least an hour before I get up. ;) We usually go to bed late .... I do so much better at night, that I hesitate to use the good part of the day to battle my insomnia. :lol:

So, it's to bed about 11-12, then I wake up sometime during the night, which is sometimes for an hour or more, but on average for about 30 min. Then I wake up in the morning 7:30-9:30 depending on how much sleep I got the night before, how long I was awake in the middle of the night, etc. I need about 7-8 hours of sleep ... but my insomnia adds to the time in bed significantly.

In the morning when I wake up I'm at my worst for the whole day, so I usually prop myself up on pillows, take my thyroid meds, check my email, take my 30 min. before a meal meds, check message boards, then get up and eat. So, the 10 AM time is the time I actually get up.

Some nights my insomnia is so bad that I only actually sleep for 3-4 hours, but most nights it's 7-9 hours.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Guest LittleMissAllergy

Hi everyone-

I got a little behind on the posts, so I'm going to work on that.

But I had a couple of questions-

First off, I'm going to be off of antibiotics for a while because my LLMD found 4 different co infection viruses through BioSET. He found Mycoplasma, Epstein Barr, HHV6 and one other one (I forget its name). Anyone deal with this before? He can't "find a way into my body" right now, but he does have me on Cordyceps. I'm still very sick though :( And scared. But I know that's a whole issue in and of itself! Just like we kinda talked about...

But then he also told me that I need to measure my pH with pH sticks. So I went out and got pH tape and used it this morning, and my pH was 7.5. I got nervous because he said that anything above a 6.8 was bad and that would be a good environment for the viruses, so I'd have to drink a "green veggie drink" to fix that.

But then I looked it up and got confused, because green veggie drinks are for alkalizing your body, and isn't 7.5 already too alkaline? Isn't below 6.4 too acidic? I'm really confused.

Plus, I have no idea how to make a green veggie drink. Does anyone have a recipe?

Hope you are all well!

CarlaB Enthusiast

You can buy green veggie drink mixes at a health food store, the only problem is that most of them have gluten (barley grass).

Is he going to put you on an anti-viral med like Valtrex? I take Host Defense to build my immune system. I don't know whether or not I have virus problems, it's never been brought up. I know my LLMD tests for them because others who go to him have mentioned it, but I was too sick in the beginning to ask about it.

Green12 Enthusiast
But then he also told me that I need to measure my pH with pH sticks. So I went out and got pH tape and used it this morning, and my pH was 7.5. I got nervous because he said that anything above a 6.8 was bad and that would be a good environment for the viruses, so I'd have to drink a "green veggie drink" to fix that.

But then I looked it up and got confused, because green veggie drinks are for alkalizing your body, and isn't 7.5 already too alkaline? Isn't below 6.4 too acidic? I'm really confused.

Plus, I have no idea how to make a green veggie drink. Does anyone have a recipe?

Little Miss, don't panic. It's easy to adjust the ph of your urine with diet. I've had to do this a lot, but I can't find all of my info and charts on what to eat when it is too high (or too low), so unfortunately I don't have them to refer to.

There are lots of foods actually that can adjust the ph level, here's a link I found on a quick search, showing alkalizing and acidifying foods:

Open Original Shared Link

Rachel--24 Collaborator
First off, I'm going to be off of antibiotics for a while because my LLMD found 4 different co infection viruses through BioSET. He found Mycoplasma, Epstein Barr, HHV6 and one other one (I forget its name). Anyone deal with this before?

I had a ton of stuff show up in BioSET. BioSET doesnt actually diagnose these pathogens....only that your body is sensitized to them. Most of the population has been exposed to HHV-6....we are usually exposed during the first couple years of life. Having this show up in BioSET does not mean that this infection is active now. Thats not the way BioSET works.....the fact that you are "sensitive" to the viruses CAN mean that they are active...OR it can mean that they were at one time and your body is now sensitized to them.

Is the Dr. doing any desensitization treatments? I did BioSET treatments for several months awhile back and even though I reacted to nearly everything I was tested for it didnt mean that I actually had all of that going at the time. It didnt mean that each of those things was a big issue.

BioSET is a useful tool but it cant be used to diagnose any condition on its own. It can give you an idea of where to look and where you might need to direct your focus but definately cant diagnose active infections. I used BioSET and now ART as tools to guide me... but anything that shows up (which could be significant) was followed up by labwork to rule it in or out.

For me Lyme was a big one that was showing up in BioSET...however, my practitioner never said that it was the cause of my problems. There was no way she could determine anything other than the fact that I was very likely exposed to it because my immune system had become sensitized to it.

I had to turn to other methods of testing to actually determine how much of an issue Lyme really is. BioSET cannot prioritize your problems....these viruses may be significant (at the top of the list) or they may be insignificant. Without additional testing I would think it would be impossible to know one way or the other.

Guest LittleMissAllergy
You can buy green veggie drink mixes at a health food store, the only problem is that most of them have gluten (barley grass).

Is he going to put you on an anti-viral med like Valtrex? I take Host Defense to build my immune system. I don't know whether or not I have virus problems, it's never been brought up. I know my LLMD tests for them because others who go to him have mentioned it, but I was too sick in the beginning to ask about it.

Thanks Carla.

I went to the health food store (YES- I left the house! It was exhausting though.) and all of the green drinks had things in them that I'm sensitive too, so I just picked up some broccoli, spinach and kale. I think I might add like 1/4 of a pear just for flavor. Now anyone know how to do this? I guess I could just...blend it all in the blender with some water? I'm not even sure how much to drink...or WHEN to drink it really. I know it's best to drink it in the morning, but would it be beneficial to drink it in the afternoon? Hmm...

Well, my LLMD can't put me on ANYTHING right now because my body won't tolerate anything. :( I'm tolerating the cordyceps though and he seems to think that will start to help. Then he wants me to start a sublingual supplement called Ocimax or Occimum or something like that....apparently it's made up of basil.

Little Miss, don't panic. It's easy to adjust the ph of your urine with diet. I've had to do this a lot, but I can't find all of my info and charts on what to eat when it is too high (or too low), so unfortunately I don't have them to refer to.

There are lots of foods actually that can adjust the ph level, here's a link I found on a quick search, showing alkalizing and acidifying foods:

Open Original Shared Link

Thank you Julie! That site was helpful, because now I understand why my LLMD wanted me to alkalize even though my pee was alkaline. It's because your first morning pee SHOULD be acidic because your body needs to get rid of all the acid it's holding onto, so if you don't, your body stays acidic all day.

I had a ton of stuff show up in BioSET. BioSET doesnt actually diagnose these pathogens....only that your body is sensitized to them.

Right, that's exactly what I thought, and that's why I didn't panic. But then my LLMD said that he had wrote down instructions for the woman doing the testing to change the settings in the computer to look for active infections, opposed to sensitivities. I didn't even know they could do that. But a lot came up. I think the one he was most concerned about was the mycoplasma.

OH and I wanted to tell you Rachel- I got my stool test back for heavy metals and there was THREE HUNDRED times the normal amount of bismuth in my stool. My LLMD said that he's NEVER seen anyone dump that much in his whole career. He said that bismuth isn't as toxic as say, mercury, but that is a HUGE amount to dump and I probably still have more. My other metals are stuck though :(

My lower digestive system DOES feel better though...I'm wondering if the metals are more of an issue in my digestive system than the lyme!

Rachel--24 Collaborator
Right, that's exactly what I thought, and that's why I didn't panic. But then my LLMD said that he had wrote down instructions for the woman doing the testing to change the settings in the computer to look for active infections, opposed to sensitivities. I didn't even know they could do that. But a lot came up. I think the one he was most concerned about was the mycoplasma.

Hmmmm...I'm actually not aware of that being possible with BioSET. I dont think its possible for BioSET to distinguish between active infections and sensitivities. Thats why additional testing is necessary and BioSET cant be used to diagnose any type of disease condition.

BioSET

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



Celiac.com Sponsor (A8-M):



aprilh Apprentice
Thank you Julie! That site was helpful, because now I understand why my LLMD wanted me to alkalize even though my pee was alkaline. It's because your first morning pee SHOULD be acidic because your body needs to get rid of all the acid it's holding onto, so if you don't, your body stays acidic all day.

Hi LittleMiss,

Dr. Oz had this recipe on Oprah and its pretty good and very alkalizing:

spinach,

celery

green apple

cucumber

(I like to add parsley)

He blended in a blender, but I have used a juicer, too. When I do it in the juicer I add some zucchini.

Also, a good brand of green drink powder is Green Vibrance. It does have barley grass, but its gluten free.

I have even seen bottles of chlorophyll sold in the health food store and that is alkalizing.

CarlaB Enthusiast

The easiest way to take veggies and make them into juice is with a juicer. You can try a blender and see how it works. If you can have apple juice, that might make a good base and take some of the strong flavor out of it .... but then again, if it's not fresh juice then it's pasteurized, so doesn't have the alkalinizing effect of fresh juice.

Pepto Bismol is what I was thinking with the high bismuth, too.

Guest LittleMissAllergy

Thanks for the advice you guys. The blender definitely didn't work (came out WAY too thick..hard to get down) so I went out and bought a juicer (well, my dad went out and bought it) :)

And the puzzling thing about the bismuth is that I don't think I've really ever used any sort of pepto bismol type things...I've always been afraid of them because they tend to be constipating and constipation is a pretty big issue of mine.

I'm wondering if the drink that they make you drink before a barium enema/x ray is high in bismuth? I had one of those a year and a half ago and that's when I couldn't go to the bathroom at all. I kept telling them the barium never came out of me, but they didn't believe me. Maybe it really didn't!

confusedks Enthusiast

Hello everyone!!! Long time, no talk! :)

I was in Vegas, just got back today in the afternoon. I am really tired, so I'm going to go to bed. I didn't have any internet access at the hotel, so I was totally lost without the computer! :lol:

I am going in for port surgery tomorrow morning at about 11AM if everything goes as planned. B) I'm not really nervous yet, but I'm sure I'll have plenty of time tomorrow morning to be nervous! LOL! :lol:

I will reply to the PM's I got and so many of the posts I glanced over. I'm pretty behind, but I'm sure tomorrow after the surgery I'll have plenty of time in bed with not much to do. :P:)

Carla, Do you know if I take Mepron without fat (I have to fast...) would there be any point? Or should I just skip the dose?

Rachel--24 Collaborator

So I found out more about the VCS. Scott contacted someone he knows and apparantly heavy metals and solvents can cause VCS deficits.

The test is for neurotoxins and biotoxins are one subset. If the deficits are caused by heavy metals they cant be treated using the protocol which is specifically for biotoxins.

Dont know how much the metals might be having an impact but its something he may ask questions about when he talks to Dr. R.S.

There may be someone I can see who's knowledgeable about pathways/genetic/sulfur related issues. I'm excited about that because I was actually thinking it would be helpful if I could find someone who knows what to look for and what tests to run. This might be my next step if its affordable for me.

CarlaB Enthusiast
Carla, Do you know if I take Mepron without fat (I have to fast...) would there be any point? Or should I just skip the dose?

I'd skip the dose. With the fast are you allowed to take meds anyway?

confused Community Regular

Rachel.

Next time you talk to scott can you ask him were to get an good idea of what to eat on the amylose diet, i have been looking for days and I cant find anything specific.

Everyone,

I just got an email, my hair test is in the processing stage this week. I am getting really impatient.

paula

dlp252 Apprentice
By the way....how was the VCS for you guys that took it?? Could you guys not see the bars? For me the lines were pretty clear I went through it really fast because I could see everything on the screen. Towards the end there were a few that appeared blank to me.

Yeah, lots of the boxes just looked blank to me. If I stared at some of them long enough I "thought" I could see something so I guessed, lol.

I was just wondering how much sleep does everyone get. Like hat time do u usually go to bed and what time do you get up, When I read that carla gets up at 10, it made me think of this.

I go to bed between 9-11 and get up at about 5 every morning. If I sleep in it is til 6 am.

I don't get much, lol. I was going to bed between 8 and 9 and waking up at 3-4...I could sleep a bit later if I didn't have to work...had to get up at 4:15 for work. On weekends I would go to bed at 9:00 and wake up around 5...that's never solid sleep though. I wake up MANY times during the night and how long I stay awake each time varies...at least one of those times I get up to use the restroom.

Now that I've adjusted my work schedule, I'm trying to stay up until at least 9:30, and I am tending to wake up around 4 or 4:30, but have slept as long as 5:00. Again, I still wake up many times during the night, but I think I'm falling back asleep quicker each time.

My LLMD wanted me to adjust my hours later and I'm thinking he was right, lol.

Everyone,

My back was really sore all weekend so I stayed off teh computer. I am falling apart! :lol:

AndreaB Contributor

Donna,

Is your back better today?

Green12 Enthusiast
Dr. Oz had this recipe on Oprah and its pretty good and very alkalizing:

spinach,

celery

green apple

cucumber

(I like to add parsley)

He blended in a blender, but I have used a juicer, too. When I do it in the juicer I add some zucchini.

April, I saw the show with Dr Oz when he made this drink :lol:

I searched at Orah.com the day after to find the recipe and how to make it, on the message boards they were debating the recipe because they didn't really give it in its entirety on the show (amounts and total ingredient list)

Also people were having a difficult time making it in the blender, the celery just got stringy and clogged the blender. I think the consensus was that he makes it with the juicer and mispoke about the blender??

Anyhow, never got around to making it.

Little Miss, the greens powder (without gluten) might be a good option when you don't have any energy to make the green drinks, you could juice apples as your base and add in a scoop of the powder.

You can do any combo of fruits veggies with the juicer, apples are great as a base and to add a little sweet to make it more palitable then just add spinach and other varieties of greens, cucumbers, celery,etc.

Hello everyone!!! Long time, no talk! :)

I was in Vegas, just got back today in the afternoon. I am really tired, so I'm going to go to bed. I didn't have any internet access at the hotel, so I was totally lost without the computer! :lol:

I am going in for port surgery tomorrow morning at about 11AM if everything goes as planned. B) I'm not really nervous yet, but I'm sure I'll have plenty of time tomorrow morning to be nervous! LOL! :lol:

Welcome back Kassandra, how was Vegas?? Hope you had a great time!

Good luck with the surgery, you'll do great!! I'll be thinking of you :)

Everyone,

I just got an email, my hair test is in the processing stage this week. I am getting really impatient.

:rolleyes::lol:

Everyone,

My back was really sore all weekend so I stayed off teh computer. I am falling apart! :lol:

Donna!! Your bunion, your back, your uninvited bugger guests in your intestinal tract...

I am thinking a massage is in your near future :lol:

confusedks Enthusiast
I'd skip the dose. With the fast are you allowed to take meds anyway?

Yea I can take meds. They just said that I can't have any solids 12 hours before, and I can have liquids up to 2 hours before and to take all meds. I'll just skip the mepron dose. The other meds don't really require food.

CarlaB Enthusiast
Yea I can take meds. They just said that I can't have any solids 12 hours before, and I can have liquids up to 2 hours before and to take all meds. I'll just skip the mepron dose. The other meds don't really require food.

Well, if you really wanted to take it, you could take a tbsp or two of coconut oil with it. :D

Good luck with the surgery.

AndreaB Contributor

Hope all goes well this morning Kassandra.

We'll be waiting for your update when you are able.

AndreaB Contributor

Paula,

Does this mean it will be another week til you get the results? :huh:

confused Community Regular
Paula,

Does this mean it will be another week til you get the results? :huh:

If im lucky lol. I ermailed them back and asked how long will that take and still no response. I keep coming in from my yardwork and checking my email to see if they have responded lol

paula

aprilh Apprentice
April, I saw the show with Dr Oz when he made this drink :lol:

I searched at Orah.com the day after to find the recipe and how to make it, on the message boards they were debating the recipe because they didn't really give it in its entirety on the show (amounts and total ingredient list)

Also people were having a difficult time making it in the blender, the celery just got stringy and clogged the blender. I think the consensus was that he makes it with the juicer and mispoke about the blender??

Anyhow, never got around to making it.

That could be! When I made it the first time it was too thick and stringy. So, the second time in the blender i cut back on the celery. Its still thick but I could choke it down. It is much better in the juicer!

aprilh Apprentice

Fresh Lemon Water is supposed to be alkalizing too....

Guest LittleMissAllergy

Can you ever be too alkaline?

My first morning urine was 7.5ish, which I know isn't good because your morning urine SHOULD be acidic so you can get the acids out...

And now I'm about 7.8-8.0.

I'm confused again. lol.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,130
    • Most Online (within 30 mins)
      7,748

    PaulFlandreau
    Newest Member
    PaulFlandreau
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Thelma Cadieux
      Thanks but I will check it out with my doctor, usually stress will trigger it,
    • Hopeful1950
      Has any doctor suggested taking a round of Dapsone?  If you have dermatitis herpetiformis, dapsone will clear it fairly quickly.  It is not a drug you would want to take forever, but when all else failed my doc had me take it as a way to determine if it was dermatitis herpetiformis.  Sure enough it worked like a miracle and itch stopped and after 2 months the rash cleared.  Then I embarked on figuring out how to eat to avoid the breakouts.  It is my understanding that once you expose to gluten, the reaction happens and antibodies are deposited in your skin.  They can blister right away or hang around for a long time and get "activated" by other things like your monthlies, pressure, stress etc.... It makes it difficult to diagnose and difficult to manage.
    • Hopeful1950
      I use an app called Spoonful where you can scan labels and it will tell you whether it is safe, questionable (and why) and also something you can substitute.  It also makes it easier to see what is on the label.  There are some ingredients that I avoid in addition to gluten. You can also search the app by a category.  I just searched on "cosmetics and a few things popped up as compliant.  I think the app is mainly focused on food.  When I first started out reading labels was a nightmare and it took me so much time at the store.  This app has really helped me when I am looking at something new.  They update frequently, and if something isn't in their data base there is an AI function where you can enter the information from the label and it will analyze it right away for you. I have used an app called Find Me Gluten Free in the past when I am traveling to find restaurants.  People's reviews are very helpful because even when a restaurant claims to be able to accommodate, often people will find out differently and they report it on reviews. Hope this helps.
    • Scott Adams
      It took me 2-3 years to feel like my gut recovered, and then I still had gluten ataxia issues for well over a decade.  This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
    • Thelma Cadieux
      Good idea, but make sure she does not require lactose free cheese,it is common in celiac patients. 
×
×
  • Create New...