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

confusedks Enthusiast
Kassandra,

YAY on the carpet! Do you have an air cleaner of some sort to help with the formaldehyde smells?

April

No. What exactly are you talking about? All I know is the workers are here and they REEK of cigarette smoke smell. Yuck.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
confusedks Enthusiast

OMG!!! I am getting NEW insurance!!! I was accepted!!!! :D :D :P

This is perfect because my Mepron just went up to $800! :o :o I am going to need to take a break from the Mepron for a couple days until we get the new insurance. I will call Dr H to let him know to see if he has any objections to this.

But OMG I am SOOO happy! YAY!!! Today is a GREAT day! :P

aprilh Apprentice
No. What exactly are you talking about? All I know is the workers are here and they REEK of cigarette smoke smell. Yuck.

If not, just try and keep your window cracked or ventilated until the carpet airs out good.

Rachel--24 Collaborator

Kassandra,

New carpet can take awhile to "outgas". For some people it can worsen their condition....it can be very toxic. Just be aware of it in case you suddenly feel worse.

Like April said it would be good to keep your room ventilated as much as possible.

tabasco32 Apprentice

Yay Kassandra

Good news on the insurance. :)

I also got some unexpected surprises. Yeah I sued whole foods. Well not exactly sued. It was a class action law suit and I just mailed the little portion in the mail to join or whatever.

I got like a 300 dollars check yesterday and didn't know what for. Then I remembered that thing I put in the mail like a years ago. I guess they tried to jip me out of money when I use to work thier. :angry:

The ironic thing is, is that's it's probably all going to go back to them. You know with food and such.

llliiisssaa

Rachel--24 Collaborator

LoriG,

Welcome to the thread. :)

I agree with April about the liklihood that mercury is still at the root of your problems. The other thing that stands out is emotional trauma....and the fact that you had even greater emotional stress with the death of your mother.

I dont know how you were treated for the mercury but it didnt sound like you've had any type of chelation??

Mercury detox can be very challenging and for some with unresolved conflicts or emotional traumas it can be extremely difficult for the body to let go of the metals.

Theres been alot of discussion here about how these emotional issues can play a huge role in chronic illness. Dr. Klinghardt (an expert on mercury toxicity) has found that emotional traumas trap toxins in the body and sometimes remain there until these traumas or conflicts are brought to the sufrface and dealt with.

I can post more info about that later if you're interested.

If you have chronic candida that would most likely be a symptom of a heavy mercury burden which still hasnt been dealt with. I also would recommend testing for Lyme....as it is another opportunistic bug which is very commonly found in those who are mercury toxic....and vice versa.

You might want to consider a hair analysis and provoked urine challenge to get a better picture as far as heavy metals go. Mercury doesnt usually show up in hair unless exposure is recent but there are ways to determine the liklihood of mercury toxicity by looking at the essential minerals found in the hair analysis.

I can also post more info. about that if you'd like.

Theres lots of people here dealing with similar symptoms of chronic illness. This is all treatable once you know exacvtly what you're dealing with and recieve proper treatment for underlying issues.

Treatment for thyroid and adrenals is probably not bringing on noticeable improvement because you are most likely addressing symptoms of a larger problem which is still putting alot of stress on your body and preventing recovery.

confusedks Enthusiast
Kassandra,

New carpet can take awhile to "outgas". For some people it can worsen their condition....it can be very toxic. Just be aware of it in case you suddenly feel worse.

Like April said it would be good to keep your room ventilated as much as possible.

Uh oh. I will definitely keep an eye on how I feel. But I feel so lousy most of the time I probably won't even notice! :lol: LOL!

I have my window wide open so hopefully that will help. It looks good though. I'm very excited.


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor
OMG!!! I am getting NEW insurance!!! I was accepted!!!! :D :D :P

Yay! :D That is great news.

Happy for your new carpet too. :)

Green12 Enthusiast

Lori,

I also just want to say welcome and thank you for sharing your story.

Most of us on this thread have had similar journeys, for some the road has been longer and for others just a few years, but the thing we all have had in common is the desperation to find the answers to our health issues and having to look outside of the box.

CarlaB Enthusiast

I only skimmed and don't have much time ....

Lori, welcome. I agree that mercury still could be an issue if you didn't chelate it. I also think it's irresponsible of your naturopath to dismiss the idea of Lyme Disease in someone who is symptomatic without testing. Grrr. Go look at the Lyme thread as Kassandra suggested and see how many of the symptoms you have. It's also under "leaky gut". Stick around here chatting with us .... we all end up finding out what's wrong. ;) Then we get better. :D

Kassandra, yay on the new carpet. Be sure to air out your room. Can you take a half dose of Mepron from now till you get more? Will that make it last?

We don't have carpet ... we have all wood floors and wool orientals dyed with vegetable dye. :) I've been doing all this for a long time, LOL. We did away with the carpet (except for the girl's bedroom) almost 10 years ago! I hope you don't have problems with the new carpet .... but then again, you don't seem to have bad sensitivities except for food.

confusedks Enthusiast
Kassandra, yay on the new carpet. Be sure to air out your room. Can you take a half dose of Mepron from now till you get more? Will that make it last?

We don't have carpet ... we have all wood floors and wool orientals dyed with vegetable dye. :) I've been doing all this for a long time, LOL. We did away with the carpet (except for the girl's bedroom) almost 10 years ago! I hope you don't have problems with the new carpet .... but then again, you don't seem to have bad sensitivities except for food.

I am all out of the Mepron. I MIGHT be able to get one more dose out of it. I put a call in at Dr H's office to see what they say. We could have done it if it was $600 still, but the upped it almost $200! :o It's just too much money!

I hope I don't have problems with the new carpet either. I am more sensitive to a lot of things than I used to be, but it's not terrible. I have a headache today, and it may be from the carpet. But then again, I have headaches almost all the time! :lol: So, it probably has nothing to do with the carpet. LOL!

CarlaB Enthusiast

That's 5 days off it ..... I had to go off it twice for three days, but never five. You have to do what you have to do, and if you can't buy an $800 bottle, then you'll just have to be off it for a few days. This is a long term treatment, I don't see that it will make a huge difference in the big picture.

Do you have some artemisia to take? At least then you'd still be working on the babs till you wait for the Mepron.

ShadowSwallow Newbie

Kassandra,

Yay for the new carpet! And the new insurance!! Sorry about the Meprone, though. :(

LoriG,

Welcome here, as Carla said, stick around you've found the right place... and you'll eventually get better. :)

Everyone,

I had an appointment with the Naturopath today (who does TBM). I have a cold so I couldn't do an ionic footbath, and she found out that the newest metal I have to add to my collection is uranium. :blink: She did an energy treatment on me to help "dump" it... so I should be feeling pretty bad for the next few days. I also need to cut back on the Parsley and Burbur (I kind of jumped right into the full Cowden recommendation for those... I need to back way off and then build it back up :ph34r:).

Although she's not getting a positive lyme testing for me, the Zithromax tested well (I wouldn't've gone off of it even if it didn't, though). While I'm not feeling particularly well (silly cold/flu bug), I do feel like I'm making progress! Yay! :D It's going to be a long journey, I know... but I feel like now I have more than a little hope. :)

Also, I was looking over the ILADS website and found an interesting article about Hypereosinophilia and babesia. While I don't have Hypereosinophilia, I have an eosinophilic disease, and my general eosinophilic levels are at 10% (well over normal, but not alarmingly so). :o Now I'm thinking that my EE might be related to this. <_< Horrid little beasities! :angry:

Birdy

ShadowSwallow Newbie

Andrea,

It's wonderful to see you around again! I hope you and the kids are feeling better. :)

April,

I hope you get this detox thing sorted out. :(

Hah... I suppose I should actually provide a link to that article, eh? :POpen Original Shared Link

confusedks Enthusiast
That's 5 days off it ..... I had to go off it twice for three days, but never five. You have to do what you have to do, and if you can't buy an $800 bottle, then you'll just have to be off it for a few days. This is a long term treatment, I don't see that it will make a huge difference in the big picture.

Do you have some artemisia to take? At least then you'd still be working on the babs till you wait for the Mepron.

I don't have any art to take. But it will only be until the 1st. So, that's not 5 days I don't think. It's 4...I just checked. :lol:

CarlaB Enthusiast

I was thinking you'd have to wait till Monday, LOL.

AndreaB Contributor

Birdy,

Sounds like you're making some progress with your appointments.

Hope you don't get to hard with the detoxing these next couple days. :(

covsooze Enthusiast

It's off topic I know, but we had an earthquake in the night!! :o We never get them in the UK. It was 5.3, so I guess Rachel wouldn't have noticed it lol but we did! DH thought there was an intruder in the house and I've never seen him jump out of bed so fast and run down the stairs so fast. I was still recovering from the endoscopy sedation, so didn't really notice it, which is amazing for me given what a light sleeper I am.

Hi Lori :) Welcome to the thread. <<waves>>

Susie

LoriG Contributor
It's off topic I know, but we had an earthquake in the night!! :o We never get them in the UK. It was 5.3, so I guess Rachel wouldn't have noticed it lol but we did! DH thought there was an intruder in the house and I've never seen him jump out of bed so fast and run down the stairs so fast. I was still recovering from the endoscopy sedation, so didn't really notice it, which is amazing for me given what a light sleeper I am.

Hi Lori :) Welcome to the thread. <<waves>>

Susie

Thank you all for your replies and welcoming me.

The natropath I see uses biophysics/energy testing (www.nutrienergetics.com). It is sooo hard to explain, but I trust his diagnoses. I just don't think his treatment is working for me. The drops he uses are homopathic/energy clearing in nature. I've known many, many people who have gone to him after paying thousands to have tests done and he accurately matches their test results. This is why I don't want to go pay a ton of money for lyme or mercury etc. Does this make sense?

I've emailed with Carla before and I have very few lyme symptoms (fatigue, depression, irritability),

Rachel, I know my emotional stuff is probably playing a part. I have been reading about mind/body connection etc. and it makes sense. I am working with a therapist and have for years. I don't know what else to do in that area.

I wouldn't even know where to go to get chelation?! or proper testing for mercury?

This is just so frustrating.

As far as candida, last summer I took Threelac for 3 months, up to 3 packets and really noticed nothing. And I don't seem to have the usual candida symptoms right? How far do I take this? I feel like I've tried so many things and paid so much money chasing what could be it.

Right now I am taking Custom Probiotics and eating no grains. Of course I haven't eliminated all sugar. I just don't know what do to at this point. Candida? Mercury? Stress? Lymes? I'm broke, too. I start iv nutrition next week.

CarlaB Enthusiast
It's off topic I know, but we had an earthquake in the night!! :o We never get them in the UK. It was 5.3, so I guess Rachel wouldn't have noticed it lol but we did! DH thought there was an intruder in the house and I've never seen him jump out of bed so fast and run down the stairs so fast. I was still recovering from the endoscopy sedation, so didn't really notice it, which is amazing for me given what a light sleeper I am.

Hi Lori :) Welcome to the thread. <<waves>>

Susie

:o We don't get the often in the midwest, but they do come as a surprise when we get them! I lived in LA for a couple years, so I've been in the bigger ones too. They were unsettling. I'll take sleeping in the basement for a tornado warning any day over that! I mean, out of everything, you expect the ground to still be there and solid.

I've emailed with Carla before and I have very few lyme symptoms (fatigue, depression, irritability),

I KNEW your name was familiar but I couldn't place it!!! Thanks for the reminder. :)

I understand the theory behind the homeopathic stuff and I like the way much of it works. I think it's good to get your body fixing itself.

However, sometimes I think it needs more than that. You might need more help getting rid of metals, etc.

A lot here do energetic testing, I'm not going to say it doesn't work because I believe it does. :) So, maybe the answer is to just find other ways to clear the problems he's already told you about.

Plus, has he specifically energetically tested you for Lyme? I know you mentioned metals and candida, which very well could still be presenting the problem. What did the testing show? Are they still a problem?

I was given a urine test. My chelating was different because I was toxic in lead. Now I'm using Zeolite and Zeolite HP (the one for mercury). You might google them and see what you think. I don't know that they would be enough though.

It's my understanding that energetic testing will show the current stressors, so not necessarily all the stressors, so there still might be layers that you need to work through (if that makes sense). If it's still showing metals, that is what I'd work on, but maybe try something different than what you've been doing.

LoriG Contributor
:o We don't get the often in the midwest, but they do come as a surprise when we get them! I lived in LA for a couple years, so I've been in the bigger ones too. They were unsettling. I'll take sleeping in the basement for a tornado warning any day over that! I mean, out of everything, you expect the ground to still be there and solid.

I KNEW your name was familiar but I couldn't place it!!! Thanks for the reminder. :)

I understand the theory behind the homeopathic stuff and I like the way much of it works. I think it's good to get your body fixing itself.

However, sometimes I think it needs more than that. You might need more help getting rid of metals, etc.

A lot here do energetic testing, I'm not going to say it doesn't work because I believe it does. :) So, maybe the answer is to just find other ways to clear the problems he's already told you about.

Plus, has he specifically energetically tested you for Lyme? I know you mentioned metals and candida, which very well could still be presenting the problem. What did the testing show? Are they still a problem?

I was given a urine test. My chelating was different because I was toxic in lead. Now I'm using Zeolite and Zeolite HP (the one for mercury). You might google them and see what you think. I don't know that they would be enough though.

It's my understanding that energetic testing will show the current stressors, so not necessarily all the stressors, so there still might be layers that you need to work through (if that makes sense). If it's still showing metals, that is what I'd work on, but maybe try something different than what you've been doing.

Carla,

He said he worked with people who showed up Lyme just recently and I'm showing none of the markers pointing to that. So....?!?

Maybe treating what he suggested is it with some other means. Just don't know...

AndreaB Contributor

Susie,

Glad you are all ok. We don't get quakes here much but when we do we notice them, unless they are too small. They are unsettling for sure.

Lori,

I don't know what to say about your situation. I know that ART (a form of muscle testing) works in layers and also tests for what will work for each stressor that is coming up. I don't know about what you are having done though.

babysteps Contributor

Hey, semi-random question from a newbie:

Anyone have trouble with vitamins, and how do I go about pinpointing?

Just tried my sample-size Kirkman labs gluten-free & soy free multi-vitamin yesterday, had a mild reaction (as in, I'm still functional but noticable skin burning sensations, mild D, bit sweaty last night) - on purpose I waited 'til I would be cooking from-scratch meals at home (and no new ingredients!) for a stretch so that if I had a reaction I'd know it was the vitamin.

Have had problems with vitamins in the past (long before I identified gluten as an issue - itchy skin & D are my classic reactions) I used to just not take them. But now my bloodwork is usually low-normal on something (most recently at high end of "low" on vitD, prior one was low normal on iron), so my Dr. was a bit insistent (and she's usually laid back). This was my second try at gluten-free vitamin, first was from natural food store, when I reacted to that I noticed several soy items (from various things designed to boost women's health), and thus the kirkman attempt since is soy free.

Other random vitamin history if it helps: once several years ago I had a nasty D bout that resulted in low potassium; rx potassium solved in hours. Too much vitC can be a challenge for me, but takes many times the suggested daily to create that reaction, and is usually skin only (not D)

Thoughts? Thanks!

Oh, and on earthquakes - I grew up in Wash state, so felt many small ones. Biggest one I ever felt was here in CT! On second floor of building built on what used to be a sand spit. DH missed it, he was in CA for a conf :)

confusedks Enthusiast
It's off topic I know, but we had an earthquake in the night!! :o We never get them in the UK. It was 5.3, so I guess Rachel wouldn't have noticed it lol but we did! DH thought there was an intruder in the house and I've never seen him jump out of bed so fast and run down the stairs so fast. I was still recovering from the endoscopy sedation, so didn't really notice it, which is amazing for me given what a light sleeper I am.

Earthquakes are SO scary! We get them fairly often here and they scare me EVERY time! And 5.3 is a pretty good sized one! :o

Anyone have trouble with vitamins, and how do I go about pinpointing?

I cannot take multi vitamins. I probably should be taking one, but they upset my stomach WAY too much. Is it possible for you to take Vitamin D in a supplement on its own? The problem with multi vitamins is we don't know what we're reacting to.

If you're low in iron...can you take ferrous gluconate on its own?

babysteps Contributor
Is it possible for you to take Vitamin D in a supplement on its own? The problem with multi vitamins is we don't know what we're reacting to.

If you're low in iron...can you take ferrous gluconate on its own?

Good insight - may be time for me to give up on the multi format!

I do have a Kirkman sample with the pair of calcium & vitD only, I'll try that next (haven't done yet), maybe will work better :)

Fortunately I have been fine on iron now that I eat more veggies (esp broccoli and bok choy) & have meat at lunch more often.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,634
    • Most Online (within 30 mins)
      7,748

    Tiana
    Newest Member
    Tiana
    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

    • Scott Adams
      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
×
×
  • 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.