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

confused Community Regular

Yayy, others are going to take the test lol. After we all take it, donna can make us a spreadsheet lol. I really hope someone ets an higbher score then me lol

paula


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
CarlaB Enthusiast
Carla, I was just reading on Scott's website about Tindamax. He said it has anti-parasitic properties about it. I wonder if part of your strong herx was parasites...? Maybe you already knew this, but it was an "OMG" moment, for me, about you! :)

Maybe, I guess it's possible. It was around the time I took the Humaworm. I also get this herx from too much GSE, but that could also be parasites. I took Tindamax one week per month for four months. I really don't know.

Has anyone looked at the thread about treating Lyme with infrared? It's really interesting stuff. What do all of you think of it? If it were really as simple as getting that machine, I'd get on the next plane over to Germany and buy one. Is it that simple? The part that really interests me is that greater than 90% of the people he treats get well and don't relapse. He's been treating for 8 years and has treated 1200 people.

confusedks Enthusiast

I just did an ecoffee, and it is SO much easier than colonics. I haven't done any ecoffee since my last colonic, because I was afraid it would be horrible.

But...I did it and held it for 15 minutes and felt like it was a joke! :lol: :lol: I didn't realize how PAINFUL the colonic was! Sheesh...who knew?! LOL! :lol:

Everyone who is going to take that test,

I will ask my mom if I can do the test when she gets home, since I need her credit card. ;) I will report back with the scores when I do it.

Carla, I haven't read that thread yet. I will go look at it when I have a chance. I'm all interested in going to the gym, so I will do that instead of staying home and reading on LN. :lol: Today is a BIG detox day. Shots, Gym, Sauna, Ecoffe! Wahoooooo! :)

mftnchn Explorer

Carla, I read the first page of the LN thread, it looks interesting. Sounds like what Dr. Klinghardt does. My LLMD did some treatments to activate blood cells using UV light and it sounds like it is trying to utilize a similar concept.

Off to do ecoffee, still not feeling too well.

Sherry

confusedks Enthusiast

I felt a bit better after doing my ecoffee, but now not so much, LOL! :lol: Went to the gym for literally 5 minutes. 4 minutes on the treadmill, then home. <_<

I'm trying to get all of this stuff organized with the Port and IV abx and it's NOT going how I wanted. :rolleyes: I'm SUPPOSED to have the port surgery on Monday at 11AM, but it's looking like that might not happen. I thought everything was being reviewed by the insurance co. for pre-authorization (for the IV abx and home health care), but I just called them and they said they haven't gotten anything from the Dr's office! :o:angry:

Why does everything have to be such an ordeal!? :unsure:

confusedks Enthusiast

Carla,

I don't know about the laser thing on LN. I don't really know what to think of it yet... I am skeptical. We'll see. I'm not going to be jumping on a plane to Germany any time soon. But if you do...I'll fly out to see you and use it! :lol:

aprilh Apprentice
April, it's the VCS test (found on the mold page):

Open Original Shared Link

Thanks Donna!

Donna, thanks for posting that for me. I have been outside having an breakdown with my porch lol. I did it from the second site posted for 14.95.

Kassandra, cant wait to see what the gbene test will tell you. I dont think i could spend that much on a ene test, cause i think the rsults would scare me way to much lol

paula

Paula - you okay?


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



Celiac.com Sponsor (A8-M):



aprilh Apprentice

my score was 99.62%. Sheesh! What now? :(:o

aprilh Apprentice

Scott says that the treatment protocol for biotoxins is cholestrymine, actos ??, and low amylose diet. Isn't cholestrymine the toxin binder Rx that you guys were talking about? And anyone know what actos is? Anybody have a good link to low amylose diet guidelines? Does the cholestrymine only really absorb toxins?

CarlaB Enthusiast

It might have been a lot like that laser Sherry .... but this one is a strong laser and from what I've read is not available here. Kassandra, you ready to stay here 8 weeks? If not, G. is getting one on LN and she lives in WA. :)

Cholestyramine will bind other things, has to be away from meds. It absorbs bile in the intestines so the bile can't be reabsorbed. I took it for a few months.

Rachel--24 Collaborator

I tried to take the test but the freakin thing says I have 0 VCS's left. :angry:

I never even got to take it!

I have results for part A and B but nothing for the VCS. I paid for it and have confirmation so if it doesnt show up that I have 1 VCS (maybe it takes some time?)...I'm gonna have to contact them. YAY! :rolleyes:

Anyway....I tested positive. Yeah..I know...its a huge shock. :P

I know I've had major fungal issues...mainly aspergillus and candida but it was pretty severe the whole time I was doing BioSET, its been a major issue with ART as well (although not as bad this last time). My bloodtest for candida was extremely high but then improved alot when I was retested.

I think some of it might have improved because it really wasnt that big of an issue with ART a few months back. I also had the LED for fungal toxins so that may helped as well...I'm not really sure but I do feel better now.

I still think I'd test really high with the VCS.

Another thing, it states that mercury and other neurotoxins can cause VCS deficits....which cannot be resolved with the treatment protocol. So even if I test really high I still wont know if its related to biotoxins?? :huh:

Rachel--24 Collaborator

I've been following G's thread about the laser...I dont really have any thoughts on it either way but I'm crossing my fingers. It does sound promising. We'll see.

I'm waiting to hear what G has to say about it. I'll probably pick Scott's brain next time I see him.

AndreaB Contributor

I'll have to think about this test for VCS.

Wasn't getting updates again......don't know what's up with that so I was behind 2 pages.

mftnchn Explorer

I'll be interested if the laser works, we all need something that is quick and totally effective. :D

Got my test results back and am trying to figure them out. I think that I have signs of anemia but not life-threatening. My guess is that if I had done this last year when I was first diagnosed with celiac it might have been more scary.

TIBC is slightly elevated 75.3 (46.4-69.5)

Fe% is 29.9 (found one reference to a doctor who treats when 22 or lower)

Serum iron is 52.8 (no range given, I found one place that says range for females is 50-170)

Ferritin is 30.88 (range 13-400) (seems like this is moderately low, found one reference where the doc treats if under 40)

Hemaglobin and Hematacrit look fine.

There are a few abnormals on my CBC but I haven't figured these out yet.

Feeling a little better today, maybe the worst of the herx is past.

Sherry

lynne1978 Rookie

Hi all, couple of questions, sorry if I sound daft/silly/thick etc or if you've already replied to answer these q's but i've been trying to look up the answers and theres SOOO many replies I cant find them!

1. What is a herx? been trying to figure out what u are talking about on here!

2. What are these tests you are discussing at the moment and what are they meant to show? They seem to be getting the thumbs up from people but I cant figure out exactly what they are!!!

3. How many on average things do these Bio test things test for? What do you look for when deciding on getting one?

thanks!!!

confused Community Regular
Thanks Donna!

Paula - you okay?

Im ok, we took the porch out yesterday and found some scarythings under it. OUr house is on bricks not concrete and it is starting to fall apart. Plus guess what was under my porch, my favorite thing in the world, MOLD. So now it is going to cost us double what i put aside for the porch. So now i cant landscape the front yard the way i wanted.

my score was 99.62%. Sheesh! What now? :(:o

Oh great I am still the highest at 99.99.

Scott says that the treatment protocol for biotoxins is cholestrymine, actos ??, and low amylose diet. Isn't cholestrymine the toxin binder Rx that you guys were talking about? And anyone know what actos is? Anybody have a good link to low amylose diet guidelines? Does the cholestrymine only really absorb toxins?

I have no idea on any of that stuff. I searched for over an hour yesterday trying to find low amylose diet guidelines and nothing that i could follow. The best article i found said not to eat anything that is grown underground. Im thinking i might have to buy the mold warriors book and another one that they talk about.

I tried to take the test but the freakin thing says I have 0 VCS's left. :angry:

I never even got to take it!

I have results for part A and B but nothing for the VCS. I paid for it and have confirmation so if it doesnt show up that I have 1 VCS (maybe it takes some time?)...I'm gonna have to contact them. YAY! :rolleyes:

Anyway....I tested positive. Yeah..I know...its a huge shock. :P

I know I've had major fungal issues...mainly aspergillus and candida but it was pretty severe the whole time I was doing BioSET, its been a major issue with ART as well (although not as bad this last time). My bloodtest for candida was extremely high but then improved alot when I was retested.

I think some of it might have improved because it really wasnt that big of an issue with ART a few months back. I also had the LED for fungal toxins so that may helped as well...I'm not really sure but I do feel better now.

I still think I'd test really high with the VCS.

Another thing, it states that mercury and other neurotoxins can cause VCS deficits....which cannot be resolved with the treatment protocol. So even if I test really high I still wont know if its related to biotoxins?? :huh:

That is odd rachel. Has it shown up yet. I know when i went to test results I had to scroll down to see my charts. But my percentage was only shown right after the test. Im happy i ccp'ed it before it disappeared lol

paula

CarlaB Enthusiast
1. What is a herx? been trying to figure out what u are talking about on here!

A "herx" is a Jarisch-Herxheimer Reaction which is an increase in symptoms in Lyme treatment during treatment. Symptoms generally flare when starting a new medicine or on a monthly cycle (or both).

confused Community Regular

Lynn,

Dont feel bad about not knowing what an herx was, When i first peeked intothis group and heard carla talk about an herx, I thought it was her monthly visit lol

paula

dlp252 Apprentice

Well, I ordered the test too and nothing is showing up anywhere, so I haven't taken it yet. I emailed them to see what's up. I got a confirmation email from PayPal, but nothing from the testing place.

confused Community Regular

Donna,

I think i read somewhere that it could take 24 hours if you pay threw paypal, but im not 100 pervent sure lol

paula

dlp252 Apprentice

Okay, they responded to my email and I was able to find and take the test...my score: 99.99997%...confirming what I already know...I'm toxic. :lol:

aprilh Apprentice

I am considering trying 1 month of the Cowden protocol. I would have to order the package which is hugely expensive. I guess this works on Echiriolosis (msp)?? I think that is what one of my igenex test result numbers indicated it "could" be. Since I am not too sick I was thinking this might work.

I REALLY wish I could find an art practitioner to help figure this out, but I would have to travel and that just isn't going to happen right now.

dlp252 Apprentice

April, I'm taking some of the Cowden stuff and I DO think it has been helping! They have (or at least did a few weeks ago) a spreadsheet on the website that tells what to take with what and suggested "dosages" I think.

I had ART and BioSET to help me adjust those dosages, but at least you'd have a starting place.

confused Community Regular
Okay, they responded to my email and I was able to find and take the test...my score: 99.99997%...confirming what I already know...I'm toxic. :lol:

Well i feel better now, im a little bit less toxic then you lol.

paula

confusedks Enthusiast

Sherry,

I will post the reference ranges for the tests you posted if you're interested. Each lab is a little different also, so it's really up to a Dr who treats based on symptoms. My Dr doesn't, so things have to be VERY out of range. I was looking over some old test results and something was the lowest number it could be without being out of range, and he didn't say anything. (This is the hematologist)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,335
    • Most Online (within 30 mins)
      7,748

    johnfreirefr
    Newest Member
    johnfreirefr
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.