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

aprilh Apprentice
aprilh
Posted
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.

I saw on the site that they have a VERY detailed Chart outlining what time and when everything should be taken and on what day. That would be very helpful for me! Plus some of the herbs are antifungal which is good for me, too.

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
CarlaB Enthusiast
CarlaB
Posted
I saw on the site that they have a VERY detailed Chart outlining what time and when everything should be taken and on what day. That would be very helpful for me! Plus some of the herbs are antifungal which is good for me, too.

There are anti-bacterial, anti-fungal, adrenal support, and detox herbs. It's really an impressive protocol. It wasn't enough for me at this time, but it has been a good support to the abx.

Guess what? My herx finally ended! I feel human again. As the day went on, I felt better and better. It's been a long, slow herx .... it's strange how they just all of a sudden are over.

My regular monthly flare-up was due today .... I guess it came early and was a part of all that other mess. They happen every 21-24 days and today was day 24.

I think I'll feel even better tomorrow. :) I'd give myself an 80% today ..... but I'm coming out of it.

confusedks Enthusiast
confusedks
Posted
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.

TIBC is strange. The range I have is not even close to the range you have. The hospital's range (when I was hosptalized) is 161-497.

Serum Iron: 35-151

I don't know if Fe% is the same as % Saturation, but assuming it is...the range is 20-55

Ferritin range I have is...6-137

confusedks Enthusiast
confusedks
Posted

Yay Carla! :) Glad your herx ended!! :D

I was just looking over some lab work from when I was in the hospital. It turns out that my WBC dropped from 7.4 to 5.8 in 2 days!! The first number is from before I had the epidural and the second is the day after my epidural! :o Is it possible that my body hated the epidural? It seems like a huge drop! My WBC is now way lower...like in the 3's and 2's (range is 4.8-11.2). So I wonder if the epidurals suppressed my immune system so much that it lowered my WBC's? That would be crazy!

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Is it possible that my body hated the epidural? It seems like a huge drop! My WBC is now way lower...like in the 3's and 2's (range is 4.8-11.2). So I wonder if the epidurals suppressed my immune system so much that it lowered my WBC's? That would be crazy!

Yeah....its totally possible.

I dont know if you remember me posting all that stuff about sulfites and epinephrine awhile back but Dr. Amy was wanting to look into that since I have problems with the sulfation pathway and prior to having my fillings drilled out I had anesthesia containing epinephrine (sodium metabisulfite).

She was thinking that could have set things off if I was having problems with it. Maybe it had an impact on the pathway and I was less capable of detoxing the mercury...we dont know yet.

Anyways, I think epidurals can also cause the same stress if a person is sensitive to sulfites. Sulfite sensitivity isnt an allergy...its more of a metabolic problem...so it could be affecting the body's ability to detox and also stressing the immune system. I know I've read some posts where people say all their problems started after they had an epidural.

So yeah....I think it could definately weaken your immune system if thats what was happening with you. If the epidural contained sulfites and you're having a problem metabolising sulfites...its putting stress on the immune system.

ShadowSwallow Newbie
ShadowSwallow
Posted

So, I took the test... and I have no idea how you guys got the %s. :ph34r: I have the page with the boxes with "x" in them saying which ones I got right and which ones I got wrong, but nothing more. It's going to be high, though... my eyes kept doing "fireworks" while I was trying to concentrate... and I could see hardly anything. :rolleyes:

Julie! Welcome back, I'm thrilled that you're finally out of that breakout. :wub: :wub:

Kassandra, wow! Based on what April's said about her reaction to her epidural, I wouldn't be surprised. <_<

Does anyone have advice for what to do for eczema? I'm using a steroid cream on my arms, but it's also on my face now and it hurts. :( I'm currently only washing my face with either EVOO or water, and just skimmed a washcloth with very diluted castile soap over my face in the shower.

AndreaB Contributor
AndreaB
Posted
Does anyone have advice for what to do for eczema? I'm using a steroid cream on my arms, but it's also on my face now and it hurts. :( I'm currently only washing my face with either EVOO or water, and just skimmed a washcloth with very diluted castile soap over my face in the shower.

We used something on S that worked pretty well, kept it down a little but didn't get rid of it. It would be an obvious shine though as it is lanolin based. It's pretty pricey and from Australia. If you are interested I'll dig up the info from the jar as we still have some.

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

Celiac.com Sponsor (A8-M):


ShadowSwallow Newbie
ShadowSwallow
Posted

Andrea, that would be great if you could dig up that info for me. At least I could wear it at night... might experiment with how MMU covers it up, too. Thanks. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Ok...so I never got to take the VCS. :angry:

I'm gonna have to email them. Donna, I paid with paypal too. I didnt want to but somehow it went to paypal. :huh:

Anyways, is this why I'm having problems getting the test? It still says I have 0 VCS's. <_<

Oh....heres my word of advice for the day.

Never fall for someone who's moving to another country!! :(

and yes...I knew all this but I'm blaming it on all the toxicity...I wasnt able to think clearly....or make smart decisions. :rolleyes:

mftnchn Explorer
mftnchn
Posted
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)

Yeah, I know what you mean. they don't look at the whole picture.

Sherry

ShadowSwallow Newbie
ShadowSwallow
Posted

Rachel, if you paid with PayPal they should send you an email telling you that your order has gone through, then a second email telling you that it's been credited to your account and you can take the test. It only took a few hours for mine to get through and I paid with PayPal.

I think Carla posted about this a while back, but I can't remember exactly. Has anyone tried Open Original Shared Link? I'm having increasing problems with anxiety (and am becoming increasingly dissatisfied with my counselor <_<:ph34r::() and have some very specific things I need to address. :)

AndreaB Contributor
AndreaB
Posted

Birdy,

Open Original Shared Link

I looked up his website. You can look around and see what you are interested in and read.

Rachel,

If you need another ear, you know I'm here.

AndreaB Contributor
AndreaB
Posted

Birdy,

I also want to add that we used something on a baby so you could go with something stronger that he offers.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel,

If you need another ear, you know I'm here.

Thanks Andrea. :wub:

I'm actually on vacation next week so we'll have some time to catch up. :)

aprilh Apprentice
aprilh
Posted
Yeah....its totally possible.

I dont know if you remember me posting all that stuff about sulfites and epinephrine awhile back but Dr. Amy was wanting to look into that since I have problems with the sulfation pathway and prior to having my fillings drilled out I had anesthesia containing epinephrine (sodium metabisulfite).

She was thinking that could have set things off if I was having problems with it. Maybe it had an impact on the pathway and I was less capable of detoxing the mercury...we dont know yet.

Anyways, I think epidurals can also cause the same stress if a person is sensitive to sulfites. Sulfite sensitivity isnt an allergy...its more of a metabolic problem...so it could be affecting the body's ability to detox and also stressing the immune system. I know I've read some posts where people say all their problems started after they had an epidural.

So yeah....I think it could definately weaken your immune system if thats what was happening with you. If the epidural contained sulfites and you're having a problem metabolising sulfites...its putting stress on the immune system.

I think the epidural I had during my pregnancy had a wierd impact on me. I was gettting sick prior to delivery, but after the epidural and the iv abx during delivery, my body went way down hill from there. Even during the epidural I would feel really strange every time I pressed the button. I was scared to press it because I didn't understand why it was doing that. I "felt" more than I should have because of that!

Rachel, if you paid with PayPal they should send you an email telling you that your order has gone through, then a second email telling you that it's been credited to your account and you can take the test. It only took a few hours for mine to get through and I paid with PayPal.

I think Carla posted about this a while back, but I can't remember exactly. Has anyone tried Open Original Shared Link? I'm having increasing problems with anxiety (and am becoming increasingly dissatisfied with my counselor <_<:ph34r::() and have some very specific things I need to address. :)

There is a lot of info on EFT on Mercola's site. He even incorporates it into his program if you go to his clinic. I know that he has some links on his website that tells you how to do it on yourself.

confused Community Regular
confused
Posted

I am so interested in the epidurals causing stress on the body. I fill that after I had my spinal after my emergency c/s that everything went downhill. So could this mean i have problems with sulfite.

Im sorry rachel that you are going threw this. Dang toxicity really makes us do some strange things lol

paula

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I am so interested in the epidurals causing stress on the body. I fill that after I had my spinal after my emergency c/s that everything went downhill. So could this mean i have problems with sulfite.

I dont know Paula....it could be the stress from the c/s that pushed you over the edge. If you were already "on the edge" it doesnt take much to push us over sometimes.

You can find out about sulfites by using the sulfite strips. Kassandra took that test not too long ago. I'd do it too but I dont wanna pay the dang $55 shipping charge!

Dang toxicity really makes us do some strange things lol

LOL...Yes it does! :lol:

Thanks for the laugh Paula!!

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Rachel, if you paid with PayPal they should send you an email telling you that your order has gone through, then a second email telling you that it's been credited to your account and you can take the test. It only took a few hours for mine to get through and I paid with PayPal.

Thanks Birdy! I guess it might help if I actually checked my email. :ph34r:

I did get one email right after I purchased the test but I never checked after that.

I lost track...who had the highest score? Who had the lowest? I know someone beat out Paula (which I'm sure made her feel better :P ).....was it April? :unsure:

AndreaB Contributor
AndreaB
Posted
I lost track...who had the highest score? Who had the lowest? I know someone beat out Paula (which I'm sure made her feel better :P ).....was it April? :unsure:

If I remember correctly Donna had the highest score.

I think April was just below Paula but I don't remember that one.

CarlaB Enthusiast
CarlaB
Posted
Never fall for someone who's moving to another country!! :(

and yes...I knew all this but I'm blaming it on all the toxicity...I wasnt able to think clearly....or make smart decisions. :rolleyes:

:( :( :( When's the big day? Is it a permanent move?

I think Carla posted about this a while back, but I can't remember exactly. Has anyone tried Open Original Shared Link? I'm having increasing problems with anxiety (and am becoming increasingly dissatisfied with my counselor <_<:ph34r::() and have some very specific things I need to address. :)

I have tried it .... but not long enough to tell whether it works. It got rid of a headache once .... and jaw pain ... but too early to tell for the emotional stuff.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
:( :( :( When's the big day? Is it a permanent move?

Next week....wednesday. :(

I dont think it'll be a permanent move....maybe 2 years...I dunno.

I'm thinking that since I have problems with short term memory all of this might be forgotten in a few weeks anyway. :P

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

HEY!!!....on the bright side of things the move is to Germany :o ....AND I might be going there for a visit later on this year!! :D

I will look for the laser while I'm there. ;)

aprilh Apprentice
aprilh
Posted
HEY!!!....on the bright side of things the move is to Germany :o ....AND I might be going there for a visit later on this year!! :D

I will look for the laser while I'm there. ;)

That's the way to stay positive! :D

This wouldn't be the "water" guy would it?? B)

mftnchn Explorer
mftnchn
Posted
TIBC is strange. The range I have is not even close to the range you have. The hospital's range (when I was hosptalized) is 161-497.

Serum Iron: 35-151

I don't know if Fe% is the same as % Saturation, but assuming it is...the range is 20-55

Ferritin range I have is...6-137

Yeah, the numbers are really different!! 'Course I translated them from Chinese, but I am pretty sure. I read that labs vary a lot so you can't easily compare them. I am still in range on these according to this lab, except TIBC which is up just a bit.

Overall I think it points to folate being a little down but still ok (or probably recovering).

Sherry

mftnchn Explorer
mftnchn
Posted

Birdy,

I posted on EFT last fall maybe, and Carla more recently. Have you discussed your wishes with your counselor?

S

Archived

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

Go to topic listing

  • 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. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.