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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,005
    • Most Online (within 30 mins)
      7,748

    Peg55
    Newest Member
    Peg55
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Welcome @JoJo0611. That is a valid question.  Unfortunately the short answer is slim to none.  Be proactive, when the diagnosis process is completed, start GFD.  Remember also that the western diet is deficient in many nutrients that governments require fortification.  Read the side of a breakfast cereal box. Anti-tTG antibodies has superseded older serological tests It has a strong sensitivity (99%) and specificity (>90%) for identifying celiac disease. A list of symptoms linked to Celiac is below.  No one seems to be tracking it, but I suspect that those with elevated ttg, but not diagnosed with Celiac Disease, are diagnosed with celiac disease many years later or just die, misdiagnosed.  Wheat has a very significant role in our economy and society.  And it is addictive.  Anti-tTG antibodies can be elevated without gluten intake in cases of other autoimmune diseases, certain infections, and inflammatory conditions like inflammatory bowel disease. Transient increases have been observed during infections such as Epstein-Barr virus.Some autoimmune disorders including hepatitis and biliary cirrhosis, gall bladder disease. Then, at 65 they are told you have Ciliac Disease. Milk protein has been connected to elevated levels.   Except for Ireland and New Zealand where almost all dairy cows are grass fed, commercial diaries feed cows TMR Total Mixed Rations which include hay, silage, grains and concentrate, protein supplements, vitamins and minerals, byproducts and feed additives. Up to 80% of their diet is food that cannot be eaten by humans. Byproducts of cotton seeds, citrus pulp, brewer’s grains (wheat and barley, rye, malt, candy waste, bakery waste. The wheat, barley and rye become molecules in the milk protein and can trigger tTg Iga in persons suseptible to Celiac. I can drink Grass fed milk, it tastes better, like the milk the milkman delivered in the 50's.  If I drink commercial or Organic milk at bedtime I wake with indigestion.    
    • captaincrab55
      Can you please share your research about MMA acrylic containing gluten?   I comin up blank about it containing gluten.  Thanks in Advance,  Tom
    • Aretaeus Cappadocia
      I strongly recommend 2 dedicated gluten free (gluten-free) restaurants in my area (East Bay of San Francisco Bay Area) (2025) -- Life is Sweet Bakery and Café in Danville. I've been a few times with friends and tried multiple entrees and salads. All very good and worth having again. I've also tried a number of their bakery goods. All extremely good (not just "good for gluten-free"). https://lifeissweetbakeryandcafe.com/ -- Kitara Kitchen in Albany (they have additional locations). I've been once and had the "Buritto Bowl". Six individual items plus a sauce. Outstanding. Not just "for gluten-free", but outstanding in its own right. Vibrant flavors, great textures. I can't wait to go back. https://www.kitava.com/location/kitava-albany/  
    • Martha Mitchell
      I'm 67 and have been celiac for 17yrs. I had cataract surgery and they put a gluten lens in my eye. Through a lot of research, I found out about MMA acrylic...it contains gluten. It took 6 months for me to find a DR that would remove it and replace it with a gluten-free lens . I have lost some vision in that eye because of it . I also go to a prosthodontist instead of a regular dentist because they are specialized. He has made me a night guard and a few retainers with no issues... where my regular dentist didn't care. I have really bad reactions to gluten and I'm extremely sensitive, even to CC. I have done so much research on gluten-free issues because of these Drs that just don't care. Gluten is in almost everything shampoo, lotion, food, spices, acrylic, medication even communion wafers! All of my Drs know and believe me I remind them often.... welcome to my world!
    • trents
      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
×
×
  • 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.