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

AndreaB Contributor
AndreaB
Posted

Donna,

I'd definately look into getting the root canals pulled. I know you need to get the surgery done but maybe you can put the canals on the list for next year or the year after.

Have fun today. Starbucks and a dog to play with sound like fun to me too. :)

Lisa,

Sorry you are feeling so crummy. I hope that the cleaning doesn't set you back. Sounds like the house has been bad enough for you.

We've got another thunder storm going on so I might be turning off the computer.....hubby called and told me to turn off the computer.

Hopefully this storm won't last long.

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
confused Community Regular
confused
Posted
I have really bad neck pain right now too. Since moving with my grandma I have gotten bad neck pain, head pain, eye pain and nose pain. Real bad. I wonder if it's dust or mold or both. :( I wake up with swollen eyes and I can't sneeze this stuff out like my grandma can.

Me and my mom who has OCD are going to clean my grandmas house today. It's sooo bad. I'm sort of scared. Oh and my ears feel clogged up to. But the zeolite helps. I just put it in my nose and eyes and ears and it helps some.

That is me the last few days and it sucks. I know its the mold from the hay next door. We keep talking about putting up an fence there to block it, but havent gotten around to it yet with everything going on.

Another reason why i guess i need to get me some zeolite.

I have 2 sick boys this morning. My oldest had an golf tournament so i woke up at 5 to get him and he was like mommmmmm im puking. So I was so what you are not going lol. Then 2 hours later my other son was like mom both of the older boys are puking. I am nasuated now to, butnot sure if it is psycholmatic or not. I guess it is best they get sick the week before school starts lol.

Nora,

Thanks for all the info. I will look at the links when i can think straight.

Everyone,

About the motorcyle for detox. I use to love to ride motorcycles, til i crashed and ripped up my leg really bad. Hubby and I want some when we no longer have kids in the house lol. The kids said we cant get them til they are gone, in case something happens. I think they know that we wont get them when they are gone, cause we will be too old lol

paula

confused Community Regular
confused
Posted
We've got another thunder storm going on so I might be turning off the computer.....hubby called and told me to turn off the computer.

Hopefully this storm won't last long.

We have been having lots of those here lately. We have had tornados about 20 miles away also. The other morning i got up and thought we had suds from the fountain in my flower bed. Hubby came home and laughed at me, it was hail/sleet lol. My front yard has so many branches and leaves all over that it is driving me crazy. But i dont have the energy to clean it up lol

Ill pray that it wont last long.

paula

confused Community Regular
confused
Posted
I've been there before. I'ts good and a nice location. Right by the bay brige. There's a Gordon Birch right next to it and that's real good. I'ts on Embarcadero I think? I miss SF. I use to live in Daly City. :(

Maybe we should plan like a time in 2011 to met up and have lunch there. I am hoping to be healthy by then lol

paula

confused Community Regular
confused
Posted
Hum, I wonder if this is why my growth didn't change much in two years? :unsure: I was taking a lot of vitamin D for a few months during that time.

I bet that is a good possibility. I am going to go threw all my supplements and vitamins and see if i have any vitamin D. Are you still taking the vitamin D.

What would be a good amount to take, and is it best to take it all alone.

paula

dlp252 Apprentice
dlp252
Posted

Keep in mind that I was deficient in Vitamin D (blood tested), so they had me on a mega dose of 50,000 iu. That's a lot. I took D3, and ony took that high dosage for a couple of months. I bought it from my BioSET lady, so she was able to test me to make sure I could handle it and the dosage. I am not still taking it, but need to look into getting more, probably at a much lower dosage.

confusedks Enthusiast
confusedks
Posted
Oh yeah...Kassandra....are you taking any type of toxin binder?

Maybe you can talk to your NAET practitioner about that?

I'm not...except Questran. I don't know if that counts. My NAET lady tested me for chlorella and a few other toxin binders and my body didn't want any! :o I will ask her to test me for more stuff when I see her tomorrow.

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

Celiac.com Sponsor (A8-M):


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

Andrea,

Thanks for the reminder. :)

Suddenly we got busy right at 10:30....I got out late today. :rolleyes:

I called the doctors office....and they were closed. :(

Closed Mondays and Fridays so I'll call tomorrow...hopefully there are still some time slots available.

Hope the storm isnt too bad!

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I'm not...except Questran. I don't know if that counts. My NAET lady tested me for chlorella and a few other toxin binders and my body didn't want any!

Hmmm...how long have you been taking the Questran??

Seems like when I read up on cholestyramine one of the side effects was constipation. It said it could cause or worsen constipation....so I was kinda figured right then and there that it wasnt gonna work for me. :rolleyes:

If you havent been taking the Questran for very long it could be part of the problem.

I dont test well for chlorella either...my body HATES it....does not want anything to do with it. I dont test well for any of the other binders either. I've been binder-free for a long time now.

It might be that since my pathway is blocked my body is rejecting everything...because it cant effectively eliminate this stuff.

Also, some of them (the algaes) are high sulfur. I had a MAJOR reaction to Modifilan...even worse than chlorella. :blink:

The only one that tested well for me was charcoal....my body was really wanting it for a short time...and then it had had enough. Maybe because I racheled it? :ph34r:

I'm kind of wondering about the zeolite I tried a few weeks ago. I wonder if its kind of "binderish".

It seemed to help a little but I cant confirm it without trying it again....which isnt gonna happen right now. Too much other stuff going on.

dlp252 Apprentice
dlp252
Posted

Well, my outing was GREAT...great fun!! We sat outside with our Starbuck's and my friend's dog was great. Very smart pooch! She learned my name in just a few minutes. Everytime my friend said my name the dog would look at me, lol. It was good to talk with my friend again...we haven't seen as much of each other since she got married with dog (not the husband's fault...just busy lives, lol). :lol:

confusedks Enthusiast
confusedks
Posted
Hmmm...how long have you been taking the Questran??

Seems like when I read up on cholestyramine one of the side effects was constipation. It said it could cause or worsen constipation....so I was kinda figured right then and there that it wasnt gonna work for me. :rolleyes:

I've been taking questran on and off for a while. It doesn't constipate me at all...because lately I've had really bad D. But when I started the Alinia, constipation became a problem.

I test well for the questran, so I've stayed on it. I'm supposed to take it 3x/day, but that's impossible to do...since it has to be taken so far away from stuff. On a good day I take it 2x.

AndreaB Contributor
AndreaB
Posted

It is with great sadness that I have to say that I won't be able to get my teeth done for 2-3 years. :(:( We have another obligation (bill) we need to tend to and we are going to work on some other bills next year. We'll stay on the toxin binders so I'm thinking that will help keep me from getting worse. We've canceled our ART/ASYRA and won't be seeing Dr E for that long either.

I'll still be here reading along and contributing when I can though.

mftnchn Explorer
mftnchn
Posted

Well, it turns out my SAM/SAH results were done a whole month ago...apparently they were filed in my chart without giving me a copy and weren't found when they looked for me I guess.... My doctor marked them as being OK though they are out of range on the lab range. I need to see if I can figure anything out from them.

I picked up my Vitamin D levels and was shocked; the 25 OH Vit D dropped to 8 from 54 the beginning of July, which seems impossible given how I am supplementing. The office is checking with the lab as I suspect an error, and now I have an appointment next Monday to see my LLMD in case this is an accurate test.

Sherry

mftnchn Explorer
mftnchn
Posted
It is with great sadness that I have to say that I won't be able to get my teeth done for 2-3 years. :(:( We have another obligation (bill) we need to tend to and we are going to work on some other bills next year. We'll stay on the toxin binders so I'm thinking that will help keep me from getting worse. We've canceled our ART/ASYRA and won't be seeing Dr E for that long either.

I'll still be here reading along and contributing when I can though.

Andrea, I am so sad about that! I know those bills have been such a burden for you. Also I know you have been looking forward to these appointments for months.

Sherry

mftnchn Explorer
mftnchn
Posted
One thing is that about one-third of the patients get very low TSH when the ft4 and ft3 are right for them, so doctors tend to under-treat them to get the TSH within range.

My ft4 and ft3 are at the bottom of the range, or below when my TSH is in range.

That's me. My ft3 is right in the middle but TSH is very low. My LLMD is pleased with it, other doctors always want to cut way back on my T3 but I ignore them, LOL!

But on LDN my free's are just below midrange when TSH is in range.

On teh LDN forums, many have MS and they think that about 85% get significantly better on LDN, and that the rest just are misdiagnosed and have Lyme. They keep posting about LLMD's fr that reason. The people that are midiagnosed and really have Lyme, leave the LDN forums but the MS people theorize that LDN should still help the Lyme patients alongside with Lyme treatment. (LDN is very cheap, by the way)

Nora, this is very interesting. I was on LDN for several months but it didn't seem to do anything so my LLMD said to quit.

Nanjkay Apprentice
Nanjkay
Posted
I think my Graves definately figures in somehow. I dont know what its doing now...but definately in the beginning I think it played a role in stressing my pathway.

Graves accelerates everything.....my body was totally revved up. Epinephrine and other phenolic chemicals/hormones were probably stressing the sulfation pathway.

Funny how epinephrine/norepinephrine comes up for me ALL the time....theres gotta be a reason for it.

Norepinephrine is elevated in Graves Disease.

I am so confused. I have been on a drug called Nortriptyline...a tricyclic anti-depressant in low doses for 15 years. I was put on it for the fibromyalgia to help me sleep. It is not in high enough levels to be an anti-depressant, but it does mess with my norepinephrine. Could this have caused the Graves?

If my Graves is still active I wonder if there could still be some "revving up" going on? :unsure:

Norepinephrine also feeds pathogenic bacteria. <_<

BioSET showed a problem with epinephrine and T3.

Could the Nortriptyline be why I can't take T3? I have tried to ween off of it many, many times and I get the worst eye symptoms when I do.

More to worry about!!!! :o

I think I NEED desensitization to epinephrine/norepinephrine...and other hormones that I've become sensitive to as a result of impaired sulfation.

I dont know if LDN would help with my Graves now....I guess it depends on whether or not antibodies are present. Its another thing for me to look into.

I read something yesterday that an Endo saw no improvement using LDN in patients with radioactive iodine induced hypothyroidism (me). But, since I did so poorly on ABX and they caused a worsening of my eye symptoms ( LDN is supposed to help with cytokines and the orbital fibroblasts with thyroid associated opthamology (I have bulging and painful eyes)) I asked my naturopath today if I could try it. What a mouthful! :rolleyes:

We'll see.

Nancy

Nanjkay Apprentice
Nanjkay
Posted
Nancy, this is the lab I am waiting for, SAM/SAH results and also ammonia levels. I HOPE to get them this week. They were drawn June 30!!!!

Sherry

You have been waiting this long for that test!!! OMG. The researcher/scientist who will consult with me wants that test to be done first before he starts consulting me. Yikes.

What does the lab say when you call? Are they just really busy?

Does the methylation panel check for the SAM and ammonia levels or was that another test from the same lab? My naturopath ordered just the methylation panel today, but she is in San Diego and we talk over the phone, so I have to pay someone to draw my blood.

I am curious to hear what you find out.

Nancy

mftnchn Explorer
mftnchn
Posted

Nancy, it shouldn't have taken so long. It looks like the test was run about 2.5 weeks after the blood draw. Not sure when it actually arrived at my doctor's office but the lab took a 3 week vacation and my doctor took a 2 week vacation and it somehow got lost in there, came in and was put in my chart with my doc's signature but I didn't get a copy until today.

Sherry

mftnchn Explorer
mftnchn
Posted

Nancy, my doctor just ordered the SAM/SAH and ammonia levels from that lab. I don't know what the full panel includes.

Sherry

aprilh Apprentice
aprilh
Posted
I have really bad neck pain right now too. Since moving with my grandma I have gotten bad neck pain, head pain, eye pain and nose pain. Real bad. I wonder if it's dust or mold or both. :( I wake up with swollen eyes and I can't sneeze this stuff out like my grandma can.

Me and my mom who has OCD are going to clean my grandmas house today. It's sooo bad. I'm sort of scared. Oh and my ears feel clogged up to. But the zeolite helps. I just put it in my nose and eyes and ears and it helps some.

I have been having really bad neck and back pain lately. My legs hurt, too. They don't hurt just sitting, but I feel it when I go up the stairs. Its like I have muscle soreness but I haven't worked out!

aprilh Apprentice
aprilh
Posted

Hi Everyone! I am at the beach. I just now got caught up. We have to use dial up here.

So If I use energetic testing to detect parasites, do you think Naet or Bioset would be better.

I don't have access to ART. I think you are right though, the other testing might be a waste of money.

My stomach hasn't been good lately. I get so bloated after meals, nauseaus sometimes, and in general just a yuck feeling.

dlp252 Apprentice
dlp252
Posted

Aw Andrea...I'm sorry to hear it...makes me sad too!

mftnchn Explorer
mftnchn
Posted
I have been having really bad neck and back pain lately. My legs hurt, too. They don't hurt just sitting, but I feel it when I go up the stairs. Its like I have muscle soreness but I haven't worked out!

Me, too. Especially when I get out of bed in the morning.

Sherry

nora-n Rookie
nora-n
Posted

I ran across something on cytokines and celiac today: Open Original Shared Link

They cannot explain all celiac with the genes, the cytokines are involved too.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I am so confused. I have been on a drug called Nortriptyline...a tricyclic anti-depressant in low doses for 15 years. I was put on it for the fibromyalgia to help me sleep. It is not in high enough levels to be an anti-depressant, but it does mess with my norepinephrine. Could this have caused the Graves?

I doubt that it would be a cause for your Graves Disease.

Something was already causing the Fibro pain...so most likely one of your underlying issues (Mercury? Copper? Lyme? Some other toxin or bug?) had a role in triggering the Graves.

Norepinephrine is elevated in Graves...so are the thyroid hormones (T4/T3). Those things dont cause Graves Disease though....they are a symptom of the Disease.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,173
    • Most Online (within 30 mins)
      7,748
    JOANN KEENAN
    Newest Member
    JOANN KEENAN
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      I’m so confused…

      By knitty kitty · Posted

      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
    • Scott Adams
      Testing

      By Scott Adams · Posted

      Yes, if you had symptoms when eating gluten ruling out celiac disease won't necessarily mean you'll be able to eat gluten again, although it might mean that you may be able to be less strict with your gluten-free diet. 
×
×
  • Create New...