Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Omg...i Might Be On To Something
0

33,363 posts in this topic

Julie,

I'm sorry you're having a rough day. :( I am too for some reason today. I am still severely nauseous. I can't stand being so nauseous and then I take something, but then I sleep for 4 hours! ;):lol: Can't win.

Everyne,

Does anyone know what mycoplasma pneumoniae is? I tested positive for it. Is it really pneumonia? Is that right? :o

0

Share this post


Link to post
Share on other sites


Ads by Google:
rachel, i remember seeing a few pages back you said you had a list of essential tests to have done that some doctor gave you, can you post it if you see it? i know you said you posted it somewhere in here, but i don't think going through 672 pages is possible :lol:

Oooops...I totally thought I had reposted this. :huh:

Sorry April and Rpm.

Ok...heres the whole list of goodies from my alternative LLND (Dr. Amy).

My goals for this talk:

Show you some other factors that we have discovered with ART testing that can interfere with your recovery from Lyme

To discuss some non-antibiotic treatment options that can complement your care.

What is ART?

ART is

0

Share this post


Link to post
Share on other sites
What kinds of things did you experience when you were reacting to the charcoal?

Julie,

My typical reactions of head swelling, pressure, burning eyes, etc.

Once my system gets overwhelmed I'll react to pretty much anything. Its not like the charcoal is a problem for me...but I'll still react to it at times when my system is in overdrive.

I think its similar to what you go through with your angio attacks....but different. Ok...so that made no sense...but you know what I mean. :P

Anyway, going back to a topic I was researching back toward the beginning pages of the thread...it still seems to be a histamine problem for me.

I know this is also related to angio....but the question is why so much histamine??

Some foods can bring on immediate "attacks"....which for me would be swelling of my blood vessels that is actually visible. I can feel the pressure and the pulsing in the veins...and they are usually bulging. Other symptoms are swelling, burning, pain, headache, inflammation, etc. The worst symptoms are in my head but theres stuff going on throughout my body...including my gut....which can lead to weightloss.

Its pretty consistent as far as which foods can cause full blown reactions....while others may contribute a little at a time...until I've reached my tolerance. Its histamine content in the food. Fermented stuff is totally out of the question for me...I came to the conclusion that this is why I cant tolerate any yogurt or kefir.

Then there is also the perfumes and environmental sensitivities which also cause a release of histamine.

I'm not sure if this is all occurring because of liver toxicity...and when my liver gets particularly overwhelmed everything just boils over and the reactions are constant until things settle down.

OR...if I'm unable to eliminate histamine effectively...so that if I'm not careful it builds up and then I'm reacting to everything.

I guess these 2 possibilities could be occuring simultaniously....with one causing the other.

The other thing is that my immune system could be reacting to some of the things in my body...the metals, yeast, parasites, etc. This could probably cause a constant excess of histamine....which would get worse with any flare-ups....with foods and other things contributing to the total load.

I did have the tests for high histamine which didnt tell me anything...but this is definately histamine that I'm dealing with. I just dont know which treatment is gonna be the one to resolve it. I'm gonna talk to Amy about this at my next appt....see if theres any way to determine what will help it the most. This is probably the only symptom that I'm really stuck with...but it causes swelling, pain, brainfog, blurred vision, edema, etc..

This week I've had an increase in the inflammation...and I'm wondering if its a result of increased toxicity from my parasite treatment last weekend. <_<

Even though I didnt feel anything at the time...I'm sure it had to have had some effect. Either that or it could be that I've experimented with a few "bad" foods this week...ignoring the high histamine content. It could be a combination of both.

0

Share this post


Link to post
Share on other sites

Hi Claire!!

Thanks for the update. I was wondering how you've been.

I'm sorry that things didnt work out with your ART practitioner. I've been very happy with Dr. Amy. All of my LLMD's bring something to the table...but she brings it all together for me...with ART.

I'm pretty sure that at some point in my recovery I'll do something with everything I've learned on my "journey"....I have no idea what though. Lots of possibilities have been mentioned in the past...I would like to find a way to take the most valuable info. and put it all together. It would be alot of work but one of these days I'll be up for it. :)

0

Share this post


Link to post
Share on other sites
Carla, (and I think Mia?) on the Levaquin did either of you have nausea? I have been really struggling today and wonder if it is that.

Sherry

Yes. I had to take Prilosec ..... in fact, Prilosec is supposed to make the Levaquin work better according to Dr. B. I took it every day I was on the Levaquin .... well, after I figured out I felt so much better taking it.

Julie,

I'm sorry you're having a rough day.

Me, too.

Everyne,

Does anyone know what mycoplasma pneumoniae is? I tested positive for it. Is it really pneumonia? Is that right? :o

I think it's just the name of the bacteria. If you had pneumonia, your lungs would be filled with fluid .... this is an educated guess.
0

Share this post


Link to post
Share on other sites




Julie,

I have a shower filter. OMG...I totally love it. I think I got it early last year...it probably needs to be changed by now. I used to smell sulfur or chlorine but now the water feels clean and unsmelly. :)

I run the shower to fill up my bath.

Unfortunately, I never put one here at my moms house...which is where I'm at all week. :rolleyes:

I got a bath ball for my moms house....but its kind of a PITA...so I dont ever use it. I guess I'm lazy when it comes to stuff like that....I dont wanna spend 2 minutes swishing some ball through my bathwater :rolleyes: ...I usually get in well before the bath is even full.

0

Share this post


Link to post
Share on other sites
One of those days where mole hills seem like mountains......

I'm sorry Julie. :(

Kassandra,

Yay on the trampoline. :D

Rachel,

Thanks for posting that talk of Dr. Amy's.....I copied it over.

0

Share this post


Link to post
Share on other sites

I'm really sad because the autistic boy at my work got terminated. :(

My boss had to let him go...too many complaints and he said the "F" word to a customer. :(

He could have stayed but only if a job coach could stay with him for his entire shift...everyday....which just wasnt possible. :(

He did have someone with him for the last 3 weeks until they could figure out if there was any way they could arrange this permanantly...but there wasnt any way. :(

So yeah...it sucks! :angry:

He was doing really well for like a month after I told him to avoid cheese. Then he was eating cheese again and all heck broke loose. Lately I havent noticed any dairy but I have no idea what he eats at home...plus he still eats gluten anyway.

When things arent going well you can see it...the bad excema, the runny nose...plus all the complaining about aches and pains...other times his skin is clear and hes mostly happy.

His job coach said that he noticed in the past 3 weeks that he's fine in the morning but after lunch he kind of falls apart. Yeah...thats what I've been saying for all these months!

When I mentioned autism to him he totally disminnsed it...just like he's dismissed my thoughts about food intolerances. He said he's not autistic...he's mentally retarded. :huh:

Yeah...that really irritated me!! :angry:

So his last day was sad...and it also happened to be his birthday. We had cake for him, balloons and me and my boss got him a DVD...cuz he LOVES movies. He gave me lots of hugs and kisses...said he was sad, sad, sad...and that he'll miss me and everyone else alot. :(

I dont think he totally understood but he did know that he "quit" his job and he was sad that he wasnt coming back. He loved the little party we had for him though. :)

So...I'm gonna miss that little guy. :(

0

Share this post


Link to post
Share on other sites
Some foods can bring on immediate "attacks"....which for me would be swelling of my blood vessels that is actually visible. I can feel the pressure and the pulsing in the veins...and they are usually bulging.

Yes - that explains it perfectly!! That's what I was getting from the Humaworm! And I get that if I am just in a toxic state.

0

Share this post


Link to post
Share on other sites
Yes - that explains it perfectly!! That's what I was getting from the Humaworm! And I get that if I am just in a toxic state.

April...its the "big head syndrome"...thats why I knew exactly what you were talking about when you described your reaction.

I hate big head syndrome!! :angry:

Well for me...I'm pretty much always in a toxic state...but there's a definate correlation between an even higher state of toxicity and an even bigger head!! :lol:

Too bad there is no big head emoticon...he would be used frequently by me. He would be about twice the size of this guy. :) Most likely big head emoticon guy wouldnt be smiling though. :P

Donna may not recognize me once big head syndrome improves. :lol:

Sometimes I am not feeling extremely toxic yet certain high histamine foods...like saurkraut, vinegar, yogurt, etc...will totally trigger the big head syndrome. When I'm feeling really toxic usually my skin is more pale and just doesnt feel or look right.

0

Share this post


Link to post
Share on other sites

Micoplasmal pneumonia is what is known as "walking pneumonia." I've had it once, it was not fun. It is not as severe--like with your lungs filling with fluid, but I was plenty sick with it.

Carla, I am extremely sensitive to Prilosec, and several other acid blockers. Prilosec gave me severe muscle pain. So I guess I am stuck with this.

0

Share this post


Link to post
Share on other sites

Aww Rachel, that's so sad about your autistic "friend." :( At least you tried to do what you could do. :)

Sherry,

It's interesting, because I keep saying to my mom how extremely congested I have been, but I'm not eating dairy--which is what usually congests people. I wonder if this is the problem. It's already on my list to ask Dr. H about when I see him. :)

Everyone,

When anyone gets glutened, how long do your symptoms last? I am really starting to realize that when I get glutened (which I did on Tuesday AND Wednesday) that my symptoms last for at least a few days. Here we are on Satruday/Sunday and I'm still feeling really sick. I have only felt this way since I went out to eat on Wednesday night. It must have been the food. *sigh*

The nausea is so bad that I couldn't even take any supplements this evening because I can't even swallow water. I couldn't even take my anti-nausea med! :lol:;) That's when you know it's a problem. I told my mom I wish I had my PICC line in so we could just do IV Zofran....that stuff works like a charm! Oh well.

0

Share this post


Link to post
Share on other sites

Julie sorry you're down too, and you, Kassandra. Hope we are all better soon.

0

Share this post


Link to post
Share on other sites
Micoplasmal pneumonia is what is known as "walking pneumonia." I've had it once, it was not fun. It is not as severe--like with your lungs filling with fluid, but I was plenty sick with it.

Carla, I am extremely sensitive to Prilosec, and several other acid blockers. Prilosec gave me severe muscle pain. So I guess I am stuck with this.

I did and do get nauseu from it. I refuse to take any acid blocker ever again so don't worry we can tough it out together!!!!

Miamia

0

Share this post


Link to post
Share on other sites

Is everyone else having this new board format? It is really confusing and annoying!!!!!!!!it makes reading the posts so much harder in less there is something i am not getting

0

Share this post


Link to post
Share on other sites
Is everyone else having this new board format? It is really confusing and annoying!!!!!!!!it makes reading the posts so much harder in less there is something i am not getting

Hi Mia :)

Try this--scroll up to the upper right corner of this page and hit "options". Make sure yours is set to "standard". Hopefully, that should fix it.

0

Share this post


Link to post
Share on other sites
Hi Mia :)

Try this--scroll up to the upper right corner of this page and hit "options". Make sure yours is set to "standard". Hopefully, that should fix it.

Oh jersey angel- you are an angel-it worked.

Phew.... How are ou.

I love your new picture

0

Share this post


Link to post
Share on other sites
Julie,

I have a shower filter. OMG...I totally love it. I think I got it early last year...it probably needs to be changed by now. I used to smell sulfur or chlorine but now the water feels clean and unsmelly. :)

I run the shower to fill up my bath.

Unfortunately, I never put one here at my moms house...which is where I'm at all week. :rolleyes:

I got a bath ball for my moms house....but its kind of a PITA...so I dont ever use it. I guess I'm lazy when it comes to stuff like that....I dont wanna spend 2 minutes swishing some ball through my bathwater :rolleyes: ...I usually get in well before the bath is even full.

Rachel-

I need a shower filter.

I do have a bath ball. Its easy I put it on the faucet and just run the water through it, what do you mean about the 2 minute thing?

0

Share this post


Link to post
Share on other sites
Oh jersey angel- you are an angel-it worked.

Phew.... How are ou.

I love your new picture

Glad it worked for you :D

I'm doing pretty well, thanks. How about you?

0

Share this post


Link to post
Share on other sites
I'm really sad because the autistic boy at my work got terminated. :(

Maybe you could write to his parents and explain the food connection?? They may be open or may not, but at least you tried, right? Its so sad that these kids aren't being given every chance to be well, whether that is by going gluten and dairy free, or looking into chelation, ect. The mainstream medical does not talk about advice about this connection. So these children (and parents) will suffer for it.

0

Share this post


Link to post
Share on other sites

Kassandra,

Sorry you're still not feeling well.

Rachel,

I like April's idea.......not sure it would work, but you never know.

0

Share this post


Link to post
Share on other sites

Mia have you found anything that helps with the nausea?

0

Share this post


Link to post
Share on other sites
We bought a mini trampoline today!!! :D YAY!!! I am going to go set it up and maybe try to "rebound." Is there anything special I need to know?

You may want to try several short sessions in the beginning instead of trying to stay on for one longer period. For instance, the first day do 5 minutes, then later do another 5 minutes, etc. See how your body feels, then gradually increase the time each session. My feet were the most bothered when I first started...they got used to it and I'm able to stay on for up to 45 minutes when I'm mentally able to do that, lol.

One of those days where mole hills seem like mountains......

Aw, sorry hope today is better!

Donna may not recognize me once big head syndrome improves. :lol:

Somehow I think I will STILL recognize you, lol!

Sorry to hear about the autistic boy!!!! That is really sad.

0

Share this post


Link to post
Share on other sites
Rachel-

I need a shower filter.

I do have a bath ball. Its easy I put it on the faucet and just run the water through it, what do you mean about the 2 minute thing?

I think once the bath is full you're supposed to swish the ball through the water for a couple minutes before getting in...at least thats the way it is with mine. But I'm too lazy.

Maybe you could write to his parents and explain the food connection?? They may be open or may not, but at least you tried, right? Its so sad that these kids aren't being given every chance to be well, whether that is by going gluten and dairy free, or looking into chelation, ect. The mainstream medical does not talk about advice about this connection. So these children (and parents) will suffer for it.

His family isnt really looking for treatment options. They consider him mentally retarded. They werent really of any help trying to work with us on how to improve his behavior at work. Its unfortunate but now he will be going through a special program with classes on behavior and such. He'll be with other kids with similar challenges and he'll also be given a job through that program. Hopefully he is happy and is able to benefit from it.

0

Share this post


Link to post
Share on other sites
When I mentioned autism to him he totally disminnsed it...just like he's dismissed my thoughts about food intolerances. He said he's not autistic...he's mentally retarded. :huh:

I really hate that... I had a boss that actually called me "retarded" in front of a customer after he found out I had Asperger's.

0

Share this post


Link to post
Share on other sites
Guest
This topic is now closed to further replies.
0

  • Forum Statistics

    • Total Topics
      104,644
    • Total Posts
      921,583
  • Topics

  • Posts

    • The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests.  Not all celiacs test positive to the common Screening TTG.   The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs.  Here is a link to the University of Chicago's celiac website.  When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association).  Now they have expanded the list of celiac tests.   http://www.cureceliacdisease.org/screening/ Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me.  ($400). It paid off.  Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative.  My biopsies revealed some severe intestinal damage.  My new health provider only allows PCP/GP doctors to only order the TTG.  So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI.  Yep, it is all about the money!   Keep eating gluten and make sure your  GI takes four to six samples during the endoscopy.  Maintain copies of all your results.   Your symptoms?  Yes, there are over 300 celiac disease symptoms.  celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that!   Do not give up!  
    • It's great to hear from you, Nightsky.  Glad to also hear of your steady progress.  Living gluten free is definitely a learning process, and even the baby steps are times to celebrate.  Wish you all the luck in the world as you continue to heal for the glutenization.  
    • Hi Nicky, When you first go gluten-free your symptoms often do change.  Feeling better or worse is possible.  The healing process is a major change in our gut and that means a big change in the gut flora is likely,  which can cause symptoms by itself.  Additionally the immune system doesn't stop making antibodies on a dime.  the immune system keeps working  to defeat the gluten invaders until it is darn good and ready to take a break. You really shouldn't start the gluten-free diet until all testing is completed.  That includes a full celiac disease panel and an endoscopy with biopsy samples.  It's much easier to complete testing while still a gluten eater than it is to stop gluten and go  back on it for testing later.
    • Hi Kircket, Welcome to the forum! Yes, he could be wrong.  Not everyone passes the blood tests.  And they are just one part of the diagnostic process anyway, although an important one.   Did you have the complete celiac antibodies panel? Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA If you didn't have the full celiac disease antibodies test panel, I'd insist on getting it done.  There have been numerous people on the forum who tested positive on one antibody but not on others.
    • Three years ago I lost about 40kgs (Aussie lol) by better diet & exercise. All was going great til I stopped losing. I upped my exercise but bizarrely started gaining weight. One night a week of not being able to sleep soon became two, then virtually every night with either 1-2hrs tops or none at all. These weird symptoms started about two years ago, becoming worse in say, the last 9mnths. Then I started to get diarrhea. Occasionally then weirdly 2-3 days with multiple occurences then a day or two with nothing, then back to loose & offensive. My GP ran tests, including the TTga (hope that's  right) antibody blood test. Negative so he tells me that's not it. After 9mnths of this he shrugs and says, "I don't know what it is I've run out of ideas what ideas do you have?" Finally refers me to a gastrointerogist.  Private, of course and can't really afford it but we (my fiance and I) go. Stools and blood samples are ordered, basically bye, see you in a month. I have looked my symptoms up and they seem to point to Celiac. Today we went back. I have been having bloated stomach, sore back and limbs,  lovely burps, constant urination and crushing anxiety attacks folowed by depression (which I have never had before in my life). Admitted over the last weekend I didn't sleep for two and a half days and found myself hallucinating and crying to just be able to sleep. Mr fancy pants gastrointerogist says," Hey great news, the stools samples rule out parasites and Crohns!" I tell him how excrutiating the last month has been to which he replies, "It's not Celiac disease, (points at negative blood test results). Celiac doesnt present with diarrhea, anxiety and frquent urination all together." I also had a fecal occult blood test which showed positive & notes say are maybe due to a lower gi bleed, and a ct scan that says shows some damage which, in their words, could be due to a condition such as Celiac disease. He has booked me for a double scope as the next step, has a few ideas what it could be (won't tell me because he doesn't want me to be 'anxious'). Told me to consider that all these symptoms could be me just worrying and being anxious. Told him when this started I was not worried about anything, shrugged and said, It could stil have happened, hey, sometimes we never find out what causes it and your just stuck with diarrhea forever." Then as I was leaving he slapped me on the back and said, "Don't worry so much, see you soon." I need to have the scopes done but is it me or are the things I was told today not true?  I would honestly love it not to be Celiac disease but could he be wrong?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,651
    • Most Online
      3,093

    Newest Member
    Kricket73
    Joined