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Omg...i Might Be On To Something

Rachel--24

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confused Community Regular
confused
Posted
Definately sounds like Celiac is a possibility. Since he's IgA deficient none of the IgA tests would be positive but you could have them run the Celiac Panel for IgG instead of IgA.

That means that all the tests would be looking at the IgG antibodies....not just the antigliadin IgG (which is the one that was positive the first time).

It would probably be a good idea to take him to the GI.

I wouldnt worry about a hair analysis right now....he may just need to be gluten free.

Is he the one who was complaining of symptoms from smoke?

All of these things could be really stressing his system and it might improve alot if it turns out he has Celiac and eliminates gluten.

If thats the problem and it doesnt get addressed its not gonna help too much to worry about metals or other things because the gluten would still be greatly affecting his health. I think it would be a good idea to get that sorted out first.

Thanks rachel. yes he is the one that had problems with smoke. He has had allergy testing and is allergic to alot of things, just not majorly allergic. I need to find the list of the things he is allergic to.

He is also like me and always has red eyes. He even gets huge bags under his eyes and almost looks like bruises under them.

Today i scared him and was like you are anemic and it can lead to cancer and other health problems if u dont get of rid of gluten and got a really scared look on his face, but not even 20 minutes later he was eating cookies.

paula

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Rachel--24 Collaborator
Rachel--24
Posted
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Well im cleaning it out and guess what. All my stuff is full of mold. All my tree skirts and bulbs. I instantly got light headed and sick. I was in bed all night having an reaction. needless to say i had throw out 2 fake trees and all my christmas stuff. I even had stuff in plastic totes and somehow the lids were off. Have i said lately that i hate MOLD lol.

Awww Paula....you just cant seem to escape the mold!! :blink:

Hopefully there will be no more surprises like that. Sorry you had to toss all your Xmas stuff. :(

confused Community Regular
confused
Posted
Oh yeah!! Thats it Andrea....I thought my eyes were freaking out. :rolleyes:

I was thinking the posts weren't clearly seperated but it just appears that way because I guess I got used to seeing the avatars and personal info. up there. It takes me awhile to adjust each time. :rolleyes:

Same here. I always think im really losing it everytime things change lol.

paula

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Today i scared him and was like you are anemic and it can lead to cancer and other health problems if u dont get of rid of gluten and got a really scared look on his face, but not even 20 minutes later he was eating cookies.

How frusterating!

These are the things that scare me the most about having kids! :blink:

What if he had an "official" diagnosis....would it make any difference if the Dr. was telling him that if he continued to eat gluten his risk for cancer is greatly increased?

My only concern is that if the GI did a biopsy and it was false negative (which happens all too often) that he would then think its ok to eat gluten.

I would definately get all the IgG bloodwork done though. If the tTG is positive and if he understands that it means he's doing damage to his body every time he eats gluten....maybe he will think twice??

I dont know but thats gotta be hard on you. :(

confused Community Regular
confused
Posted
Oh Paula! I would be livid! :angry: I'm sorry. :( I hope you don't have aftereffects from the mold exposure for to long.

Awww Paula....you just cant seem to escape the mold!! :blink:

Hopefully there will be no more surprises like that. Sorry you had to toss all your Xmas stuff. :(

i was so livid. Hubby kept trying to calm me down and it was not working. My reaction was so bad, I was even scaring myself. My body was freaking out from the mold and from being mad.

I am feeling a little better today. I only have two more places in my house to deep clean and im hoping for no surprises. It seems everytime i think I am past the mold in my house, i find more of it.

I was mostly mad at the fact that the kids had made stuff in school and i had to throw it all away. I can replace the trees and ornaments but i cant replace the stuff the kids made. My girls were like its ok mom, we can make u double of everything this year.

Im really thinking of living in a bubble for a few months lol

paula

mftnchn Explorer
mftnchn
Posted
I have no experience with Humaworm....just saying hi. :D

As far as I know April is the only one here who tried it and had a negative reaction.

Charlie, I'm just finishing my second round of humaworm. I don't have any problems with it, it does cause a bit of a burning sensation after I take it. I have also tested very well for it with ART.

Sherry

tabasco32 Apprentice
tabasco32
Posted

I remember when smelling mold use to give me diarrhea. So my family had to give up eating any kind of moldy food like doritos and cheetos and stuff. Do any of you feel normal at times like your not sick but you are really toxic?

Eeekkk I have to drive to whole foods right now! 30 minutes their, 30 back. But I hate the dreaded thing of putting gas in my car first. I never liked it. It doesn't bother some people but it does me. I wont go certain places just because I need gas. How lazy huh? The smell doesn't bother me . IT's just, I don't know.

I dont like the way this forum looks. It's freaking me out.

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confused Community Regular
confused
Posted
How frusterating!

These are the things that scare me the most about having kids! :blink:

What if he had an "official" diagnosis....would it make any difference if the Dr. was telling him that if he continued to eat gluten his risk for cancer is greatly increased?

My only concern is that if the GI did a biopsy and it was false negative (which happens all too often) that he would then think its ok to eat gluten.

I would definately get all the IgG bloodwork done though. If the tTG is positive and if he understands that it means he's doing damage to his body every time he eats gluten....maybe he will think twice??

I dont know but thats gotta be hard on you. :(

Dont be afraid to have kids. If it wasnt for them, i would stay in bed all my life lol

The thing with him that is the hardest is he also diagnosed bi-polar. it is hard to really get him to listen to me about anything.

If i ever stop playing phone tag with the dr, i will ask her to run all the igg bloodwork. I called her today to leave an copy of the test at the front desk to double check everything else, and she left the office early. So i have to wait til wed. now.

It is so hard on me. Tonight i was crying again and told hubby, i hate to sound selfish, but i need to just focus on me. But it is so hard not to worry about him. I dont want him to be at the place I am at now. YOu would think after him seeing how bad I have become that it would scare him, but nope. He is a stubborn teenager.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Do any of you feel normal at times like your not sick but you are really toxic?

Yup.....thats me....every single day! :rolleyes:

Thats what I'm always saying.....its like I'm "normal" in every way...except that I'm NOT normal at all! :unsure:

Dont know if that would make sense to a "normal" person....but I'm sure you understand exactly what I mean. :P

I would be so freakin normal right now if I wasnt for all this toxicity. :rolleyes:

I'm so "functionable" now...but yet I'm completely restricted and held back by all of this at the same time. It totally baffles my mind sometimes.

I wont go certain places just because I need gas. How lazy huh? The smell doesn't bother me . IT's just, I don't know.

LOL....its just LAZY! :lol:

Maybe getting gas is "stressful" for you so you try to avoid it? Thats how I am about paying my bills....I just ignore them because thinking of finances and numbers and balancing checkbooks totally stresses my mind.

I had to recently get the automatic payment plan for everything...that way I dont have to *do* anything. The stuff just gets paid. :)

I dont like the way this forum looks. It's freaking me out.

Yeah....another one who cant handle change. Apparantly its traumatic for us. I wonder if the other board members are noticing.....or if its just us "toxic OMG'ers" that are getting stressed out by this. :P

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
It is so hard on me. Tonight i was crying again and told hubby, i hate to sound selfish, but i need to just focus on me.

I dont think this is selfish at all. You've tried real hard with him. I remember all your posts about him when you first joined the board. You want him to be as healthy as he can be...and you did alot to try to help him. If he doesnt want it right now there's not much you can do....you cant force him and the stress from trying will only make your own health issues worse.

So yes, I agree that you should focus on yourself. Once you feel alot better you might be able to focus more on him and maybe at that time he'll be ready to listen. :)

I do think getting the IgG bloodwork for him is important though.

Jestgar Rising Star
Jestgar
Posted
Maybe getting gas is "stressful" for you so you try to avoid it? Thats how I am about paying my bills....I just ignore them because thinking of finances and numbers and balancing checkbooks totally stresses my mind.

I had to recently get the automatic payment plan for everything...that way I dont have to *do* anything. The stuff just gets paid. :)

Yeah....another one who cant handle change. Apparantly its traumatic for us. I wonder if the other board members are noticing.....or if its just us "toxic OMG'ers" that are getting stressed out by this. :P

yep, just you guys. I hardly noticed :P

ShadowSwallow Newbie
ShadowSwallow
Posted

The change in the board used to totally freak me out. Now it's just rather unsettling. :P

Birdy

CarlaB Enthusiast
CarlaB
Posted
yep, just you guys. I hardly noticed :P

Well, it's not stressing me .... or hard to read .... it's just different .... I notice because of my ocd tendencies. :D

AndreaB Contributor
AndreaB
Posted

Hi Jess! Although you've probably scampered out of here now. :lol:

Rachel,

You do have to do something with automatic bill pay.......you've got to make sure the money is in the bank......much easier if you have direct deposit. :P

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

I've been thinking the past couple weeks about getting a new Dr. (yeah...cuz I dont have enough for a whole softball team yet :P ).

Anyways, I need someone here in my area who really likes a challenge and has the kind of dedication that Amy has. I need someone who will work with me on this...someone who is not afraid to take the lead....know what I mean? Its nice that my Dr. orders what tests I request and things like that...but I would feel better having someone a little more involved in trying to figure things out.

I have one person in mind that I'd like to see. I dont know a whole lot about him really (no feedback from any patients) but from what I understand he does do some muscle testing, he treats autistic kids, Lyme, heavy metals, etc.

Only problem is that he's in the same office as Dr. S.

Does anyone think this would be awkward? Its not like I'm totally dropping one for the other. More like I'd be having two doctors who work in the same office. :)

I just want to have a consult and see what he's like. It might be good for someone totally new to add their perspective to things. He might see something that has so far been overlooked. At this point I'm not learning anything new with Dr. S....and its been awhile since I've seen him.

Then today I heard that Amy may not be able to come back....so I'd have to go up to WA to see her. I'm ok with that...but it really makes me feel that its important for me to have a Dr. right here who is gonna help with all of this.

Dr H. was recommended but my focus isnt on Lyme right now. If it comes to that I'd go see him. I'm pretty sure he's exclusively dealing with Lyme patients. Kassandra....what do you think? If Lyme wasnt a big issue for you (and you werent treating it) would you still see Dr H.?

I'm really needing someone who has experience with the gut issues. I think thats probably the area that needs the most attention and so far it hasnt really been addressed.

I think my time with Dr. Amy will be better spent if in the meantime I'm working with someone here on these issues.

The other thing is that I wanna learn more about what Dr. W. is doing in Germany. I'm hoping that in the next few months theres alot more feedback available. I know someone who has an appt. with him in October....and if things still look promising by then he will go to Germany for the treatment.

I do plan on going to Germany to see my friend. I just really want to go there without these food issues and just be able to enjoy every minute that I'm there. We talk about all the foods that we'll eat while I'm there....and I'll learn to cook....and it would be so FUN if all of that were to be possible. I dont want to go to Germany and still be toxic and on a restricted diet. :(

So I *have* to get better so that I can just go and have a good time.

My friend said that if I get a little bit better so that I'm able to go there...if I can stay for like a month we can go to get the treatments while I'm there. So thats a possibility if I'm still having issues and if the treatments still look really promising after more people have experienced it.

Even though I'm really open to trying everything...I dont want to be having treatments in Germany during my visit unless it seems to really be working for people.

I have no idea if Dr. W. is anywhere near my friend though. I'm sure there would be someone in the vicinity who's doing the treatments. My friend is still new to Germany....but is gonna be getting a GPS...so not to worry... we wont get lost if we have to find the doctor. :P

Anyways, thats just a small possibility but hopefully I wont be needing to go that route. :)

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
yep, just you guys. I hardly noticed :P

:lol:

Thanks for the confirmation. :P

We're just easily "frazzled" I guess....small changes cause BIG stress for the toxic ones. :rolleyes:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Hi Jess! Although you've probably scampered out of here now. :lol:

LOL......I think she's long gone. :P

The scientist has left the building....

You do have to do something with automatic bill pay.......you've got to make sure the money is in the bank......much easier if you have direct deposit. :P

I have to put money in there??? :huh:

LOL....I've always had direct deposit so the only thing I really have to *do*....is go to work. :P

AndreaB Contributor
AndreaB
Posted

Rachel,

I don't think it would be a problem to see another doctor in the same office. Didn't S see 2 doctors in that office?

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
Well, it's not stressing me .... or hard to read .... it's just different .... I notice because of my ocd tendencies.

The posts dont seem CLEARLY seperated anymore!! :o

Carla...I think this is causing me to become OCD. :blink:

confused Community Regular
confused
Posted

rachel,

I would try to see the new dr. It seems like you have been at a standtill for some time now and its always good to get an new perspective. it isnt like u are saying the other dr is bad, its just u want to try something new. It also isnt seeing that you would never go back and see the other dr.

It is just like any other kind of doctor. OUr kids have an dr they see 90 percent of the time. There are times we cant get in to see her, so we go to other doctors and they never care. im sure if md's dont care then you are safe to the more open-minded doctors.

I would be happy to even have one person here i could see that would understand what im going threw. You are lucky u have many choices to pick from

paula

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

I don't think it would be a problem to see another doctor in the same office. Didn't S see 2 doctors in that office?

Yeah...he did...but for different issues. Thats kind of the way I'm looking at it too. Different issues. :P

I figure being a Gemini (twins) and all....one of my personalities can see Dr. S.....and the other (more dominant twin) will be seeing Dr. P. :D

So it all works out (at least in my mind). :P

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

I would try to see the new dr. It seems like you have been at a standtill for some time now and its always good to get an new perspective. it isnt like u are saying the other dr is bad, its just u want to try something new. It also isnt seeing that you would never go back and see the other dr.

Thanks Paula :)

Thats how I'm looking at it....but I was just worried about hurt feelings or something. I would hate for it to be taken in a bad way because I really do like the Dr.

AndreaB Contributor
AndreaB
Posted
I figure being a Gemini (twins) and all....one of my personalities can see Dr. S.....and the other (more dominant twin) will be seeing Dr. P. :D

:lol:

Nanjkay Apprentice
Nanjkay
Posted
Thanks Paula :)

Thats how I'm looking at it....but I was just worried about hurt feelings or something. I would hate for it to be taken in a bad way because I really do like the Dr.

Rachel-

I have seen another doctor that is part of the same practice before. Every time I have seen a new doctor, I have never regretted it...even if I don't continue with him or her, I have always gleaned information that has helped me continue to put the puzzle together...even if it is by virtue of the doctor recommending a therapy that DIDN'T help (or hurt like glutathione for instance), that in in itself was information.

Nancy

confusedks Enthusiast
confusedks
Posted
Kassandra,

How are you doing?

I'm really frustrated. <_< I realized today that I'm really ready to move on in my life, and NOT be sick anymore! :blink: I want to get a job, I want to go off to college, I want to do all the "normal" teenage stuff, and it's not going to happen the "normal" way...AT ALL! :(

I recently decided to drop out of High School and take my GED and when I'm up to it, go to community college and then transfer to a UC school (like UCLA, etc.) This is a huge realization because I was planning all along, whether in online school or not, to go to college and "go away" because I just assumed it would be fine. But as the time is getting closer (I'd have to apply in December) I realized that there is really just no way that this plan would work. I am too behind in 11th grade to be able to do all of that college stuff.

So I'm happy to have a plan that will work for me, but I'm really sad about all of it...missing out on graduating High School and getting my HS diploma....all that normal stuff that teens totally take for granted.

I know eventually I will get well, blah blah blah. :rolleyes: I'm just sad and feel like a huge part of my life is gone and it's like "that ship has sailed" kind of thing (in terms of high school/college transitioning stuff.)

I've been thinking the past couple weeks about getting a new Dr. (yeah...cuz I dont have enough for a whole softball team yet :P ).

...

Dr H. was recommended but my focus isnt on Lyme right now. If it comes to that I'd go see him. I'm pretty sure he's exclusively dealing with Lyme patients. Kassandra....what do you think? If Lyme wasnt a big issue for you (and you werent treating it) would you still see Dr H.?

I've been thinking about seeing another Dr too! :lol: Funny you posted this! :D Not another Lyme Dr because I'm really happy with Dr H, but someone for gyno stuff...there's a LLGYN/Reproductive Endocrinologist in Northern CA who is apparently amazing. I don't know...we'll see. :rolleyes:

I don't think I'd see Dr H if Lyme wasn't my main focus. He's a great Dr, but a great Lyme Dr. I don't think he does a lot of heavy metal type stuff. I could see going to him if I had lots of fatigue for example and didn't have Lyme, because he'd figure it out, but I don't think I'd go to him for the type of stuff you're trying to get answers to.

Again, he's an amazing Dr, but pretty specific to Lyme/co-infections and all the lovely complications that come with it. :P

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      Positive biopsy

      By trents · Posted

      Welcome to the celiac.com community @pothosqueen!   Can you be more specific about which IGA test was run that resulted in 114 score and said to be "normal" and could you please include the reference range for what would be normal? By the size of that number it looks like it may have been what we call "total IGA" but that test is not usually run without also running a TTG-IGA. Total IGA tests for IGA deficiency. If someone is IGA deficient, then the celiac-specific IGA tests like the TTG-IGA will be inaccurate. Was this the only IGA test that was run? To answer, your question, yes, a positive biopsy is normally definitive for celiac disease but there are some other medical conditions, some medications and even some food proteins in rare cases that can cause positive biopsies. But it is pretty unlikely that it is due to anything other than celiac disease.
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