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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Judyin Philly Enthusiast

HI BEV...

I SEE YOU AND READ WHAT YOUR POSTED BUT I'LL KEEP IT ON THE DOWN LOW.

WHAT AM I CHOPPED LIVER? :lol:

I READ ALMOST EVERY 2 DAYS BUT DON'T POST

HUGS

J


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Food for Life
Food for Life



Celiac.com Sponsor (A8-M):
Little Northern Bakehouse


  • Replies 33.4k
  • Created
  • Last Reply
CarlaB Enthusiast
thanks... I actually already got tested for co-infections, which came back negative...

Co-infections is also a clinical diagnosis. My babesia tests came back negative, yet I was diagnosed with it based on symptoms that are clearly babs. I'm sure your LLMD knows this, but it wouldn't hurt to familiarize yourself with some of the coinfections and their symptoms. :)

DingoGirl Enthusiast
Aww you guys..it's good to be back.... :wub: We need Susie Q....and Robbin too!

totally premature post - - - :P

hey, what is going on here, I pop in (at Andrea's lovely request!) and see that I"m being talked about???? HI EVERYBODY!!!! Always good to pop in to the GFPCF!!! (Gluten-Free Paradise Cult Farm) Waht is going on in here now, anyway? What's the latest? or should I say - - - WHO HAS WHAT?????? :lol: I am very punchy and tired todya, awoke this morning, drenched in sweat, from a dream in which I was studying very heavily for my FBI test, and then later, was at Maria Shriver's wedding parade.... :huh:

Anywho, it was a long day at work and I am going to eat and head to bed SO early tonight.

Loving all these cute, old pictures!! Did everyone go out and buy a scanner, or what???? what do I do to scan my old things?

LOVE and purple glitter to all of you!! :wub:

Rachel--24 Collaborator
Rachel, I appreciate your opinion on Lyme/autism. It seems that most of these kids get autism after immunizations, so I definately would shy away from them if I thought my kid might have Lyme! I can't say I would avoid having kids altogether though, but it's a risk each person has to weigh for themselves. I think that just knowing that the kid might have Lyme is a huge help in their care. Plus, kids play outside and get ticks ... they could get it anyway.

Carla,

I've posted my thoughts about the Lyme/Autism lots of times. In no way do I think that Lyme *causes* Autism...nor do I think that vaccinations *cause* Autism. Its not just one thing causing it....its a combination of genetics, environmental triggers, heavy metals, etc.

Lyme is just one piece of the puzzle. I've read the link you posted before...I think I might have it bookmarked. You guys cant even imagine how long my my list of bookmarked links is!! :blink:

I'm never able to find stuff once I bookmark it...I think I need a better system. :rolleyes:

Lyme and co-infections impair the bodies ability to detox. I just got back from my Dr. appt. and he was saying that he does believe Babesia is an issue for me. He said Babesia very much gets in the way of detoxification so it makes sense to him that its definately there....with the amount of toxicity I'm dealing with.

Of course it would never have been this bad if I hadnt been exposed to large amounts of mercury vapor while having these infections in my body. :(

I wasnt even food or chemical sensitive at all prior to that. I'm sure things were building up....but at that time I wasnt feeling it...I felt healthy.

This could be where Lyme is playing its role in Autism...by getting in the way of detoxification. So that once these vacs are administered...its too much. The vaccinations play a role but kids get Autism even without having Thimersol. Autism might be decreased without having the added mercury in the vaccinations but there are plenty of other toxins in vaccinations and in our environment which could also trigger it.

Getting rid of thimersol isnt going to completely prevent Autism from occurring. Its a major trigger...but definately not the *only* trigger. These are my opinions since there really isnt any scientific evidence to prove Lyme or mercury or anything else is causing Autism. It just seems pretty obvious to me that these two things are major players.

My concern with people who are very toxic from Lyme and/or heavy metals and getting pregnant isnt just based on Lyme...a single infection being present in the body that we can be aware of....treat... and all will be well.

If it were *just* that my life would no doubt be much easier. :(

I'm more concerned about what Lyme can *do* in conjunction with other toxic substances that can be accumulating in the body...because of impaired detoxification. Its not the bacteria itself which makes us sick...its the toxins it produces...and the toxins from other sources that accumulate when we have Lyme/co-infections/candida.

So yeah...if I were to become pregnant not only would the baby be exposed to Lyme...but also mercury and whatever else may be able to be passed in utero. I dont think I would want my baby to have this kind of start in life.

Of course kids can get bit by a tick just playing in the yard...but I would guess the effects can be far more devastating when a baby is being subjected to Lyme and other toxins and possibly already having stress on the organs crucial for detoxification....before even being born. :blink:

So yeah...the Dr.'s and Anna have told me no way for having kids...not until I'm detoxed and healthy again. I wouldnt try it anyway. I only plan on having kids if I'm able to regain my health. It would be way too hard to try and be the best parent I can be while I'm in this condition.

Also you have said that you were healthy when you had your kids...even if you had Lyme...you said you were in good health. That makes a difference. If you were in the state you're in now the outcome may have been different....thankfully...you ended up having a all these wonderful and healthy kids.

I think if I'd become pregnant in the years prior to the dental work...I would have had healthy babies. I wasnt feeling toxic at that time...even though Lyme was there. After the dental work I think the risk shot through the roof.....its just way too risky now. I dont even think I would be able to become pregnant or carry a baby full term at this point in time. :(

Its sad but its also reality. I dont try to fool myself on this.

I think everyone has the right to their own decisions but I also think it would be extremely risky and unwise for someone who is very sick with Lyme...newly diagnosed or even very sick and undiagnosed to go ahead and actively try to become pregnant.

I remember Anna told me that once you get well and the bacteria is under control...of course you still have Lyme which could be passed on but once your body is healthy..you can maintain treatment while pregnant while also supplementing to keep the baby healthy (lots of chlorella and such) and the baby can be even healthier than some babies who dont have Lyme exposure.

As much as I wanted to be a mom in my early 30's...I'm definately holding out for a time when the risk isnt so high. :)

EDIT:

Sorry about my Lyme/pregnancy rant...I just noticed the length of my post. :ph34r:

Rachel--24 Collaborator
Welcome to the club Charlie! You may wear a Lyme green baseball cap instead of the large floppy hats the rest of us wear to our lunch club.

Ummm...I think I protested about floppy hats. :unsure:

Ok..well if I didnt...I am now! :P

I definately wanna be wearing a green baseball hat like Charlie. B) I would like to trade in my floppy hat now....I assure you its still brand new..never been worn. ;)

Rachel--24 Collaborator
It's good to have you back! Now if we could just get Susan back, too. :rolleyes:

Yeah...Susan...she must come back for a visit...her and the dingos. :) Rachelville just isnt the same without them. :unsure:

DingoGirl Enthusiast
carla- It cracks me up that you notice all my avatars are outside. That's actually true....I'd live in a luxury yurt if I could (note: key word LUXURY- down comforter, fireplace, full kitchen!).

LUXURY YURT :lol:

Um, hi, Bev, it may interest you to know that I once dated - well, sort of hung out with - :huh: - - a guy who lived in a permanent and very luxurious redwood yurt that he built in Big Sur. It was FABULOUS!! But he was, um, kind of stinky. Really really super nice. More like a friend, actually, that I considered dating but really could not date. Um, every week he went "hiking" for 24 hours and was unreachable. Turns out he and his "business partner" were tending their marijuana crop in the Ventana wilderness. :huh: And then he would SELL the plants. Um, he was a yurt-dwelling drug dealer. That's right. Well anywho, the wild pigs ate all his weed that year. :lol: Strangely, he was probably the nicest man I knew the entire seven years (i.e. "The Lost Years" in Susan's dating life :ph34r: ) I lived in that debauched place. :lol:

OMG - - I'm goign to get kicked out of Rville just as soon as I'm back in........

I do miss the family-ness and pajama party that we have here!!!! But - - I don't have Lyme or anything else exotic - - in fact have never been healthier - - - okay - - a moment of scientifness here - - am going to post the latest results from my 14-month followup visit to GI:

Ferritin level at time of dx when I was tested was around TWO. At the six-month mark, it was 6, and now, fourteen months after initial dx, it is TWENTY-TWO. :rolleyes: [Normal for my size is 25 to 200. ] Can you imagine how much better I"m feeling? Hemoglobin was around 7 - it's now up to 13. Blood cells were seriously shrivelled when I was diagnosed (is that hematocrit?) and they are now totally normal size. Tissue transglutaminase at time of dx was literally OFF THE CHARTS - - it was greater than 100 and they don't measure past 100. IT is now down to THREE!!!!!!!!!!!!!!!!

As you can see, I"m over the moon about these results. I really do feel physically great. :)

JUDY - - - - YOU CRAZY LADY - - they're not begging you back because you DO post in here, don't you?????? OF COURSE WE WANT YOU HERE YOU NUT!!!!!!!!!!!!!!!!

gotta go eat now. :P


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
GliadinX
Tierra Farm



Celiac.com Sponsor (A8-M):
Authentic Foods


Rachel--24 Collaborator
It has been a learning process for everyone and I'm so pleased with everyone's progress thus far.

Thanks for all of your support this past year Andrea. :)

Thanks for your encouragement and motherly henliness. ;)

Okay, so I put up a picture of my little dog Chip (on my personal photo). Had to put her down about 2 or 3 years ago. Her owners turned her in to the vet to be put down but the vet thought she had some time left so I adopted her. Poor little thing was so sick, but so darned cute. I had her for two years and she had such a cute little personality.

Donna...what an adorable little dog!! Thats so great that you gave her 2 extra years. Chip was very cute. :)

Hi Donna- What's your Bumble Bar status? I miss Bumbles and peanut butter.

:o I fear what kind of effect the very mention of "Bumble Bars" might have on Donna. :o

I think I might have to drive to WF and clear the shelf of them....before she gets crazy. I wont actually buy them...I'll just sort of "misplace" them. :P

I saw a rheumatologist who evaluated me and said that he didn't think that I fit the clinical diagnosis of Lyme, but we shall see.

Hmmm....wonder what his criteria for clinical diagnosis is?? :unsure:

Maybe he was looking for a gigantic glaring bulls-eye. :rolleyes:

Anyways...I remember when you saw the rheumy and he told you it wasnt Lyme. :(

I was disappointed that it steered you away from testing. Once I started learning about Lyme and posting stuff...I did really think you could have it....so yeah...I was hoping you'd get tested so you could either rule it out or start addressing it and recovering.

I seriously doubt any Dr. who is very knowledgeable about Lyme is gonna say you dont fit a clinical diagnosis. <_<

Oh- yes, I will up load some very goofy pics in a bit. we'll start with childhood, progress to bad hair days, and prom pics. :ph34r:

YAY!! :D:D

My baby pics will be coming soon.....

I can only imagine what the bishop was thinking: Should I bless this mess? :lol:

ROFL.. :lol::lol:

AndreaB Contributor
Carla- Everyone says that! That I look exactly the same now as I did when I was little

Andrea- i have 2 horse ones you'll love!

Your face is still the same in your current picture.

I'll look forward to more horse photos.

Loving all these cute, old pictures!! Did everyone go out and buy a scanner, or what???? what do I do to scan my old things?

I guess we all have scanners. Another thing you might be able to do :unsure: is take some photos to the kodak photo machine. I'm not sure if they create celiac disease's though. Then you could load them onto your computer.

I hope you'll come back more frequently again.

As far as updates.....

Rachel has metal toxicity, candida, lyme

Carla has lyme and co-infection

Laura has lyme and co-infection (I think)

Mia has lyme, still working through other testing

Donna has been tested for lyme and has metal toxicity and candida

Bev is going in for lyme testing

Charlie has lyme

Jin believes she has lyme and co-infections along with candida

Lisa has metal toxicity

Did I miss anyone.....I forget......Seems I must of... :unsure:

dlp252 Apprentice

SusieQ - I had a scanner, which came with my printer when I bought my new computer last year...never used it though, lol. Now if I could only figure out how to hook up the fax part I'll be set. :P

Thanks for all of your support this past year Andrea.

Thanks for your encouragement and motherly henliness.

Ditto!

I fear what kind of effect the very mention of "Bumble Bars" might have on Donna.

I think I might have to drive to WF and clear the shelf of them....before she gets crazy. I wont actually buy them...I'll just sort of "misplace" them. :P

:P I think someone has beat you to it. I found them in three different parts of the store one day...they're already missing from one of them and the second one, well, they're gone from there too. FOrtunately they are still in the third place, but last week there weren't very many chocolate ones, which is why I bought 3. Still haven't opened them though... {{{she says smugly}}} :P

Rachel--24 Collaborator
Um, he was a yurt-dwelling drug dealer. That's right. Well anywho, the wild pigs ate all his weed that year. :lol: Strangely, he was probably the nicest man I knew the entire seven years (i.e. "The Lost Years" in Susan's dating life :ph34r: ) I lived in that debauched place. :lol:

LMAO :lol::lol:

Now theres the Susan we all know and love!! :wub:

I do miss the family-ness and pajama party that we have here!!!! But - - I don't have Lyme or anything else exotic - - in fact have never been healthier

Ummm.....do people think you have to be totally Lyme infested to post here?? :huh:

Nope..its still Rachelville...and anyone can participate..and as far as we know Andrea doesnt have Lyme. :)

We love your entertaining stories about yurt-dwelling druggies and weed eating pigs :lol: (Woah...I wonder if the pigs got the "munchies"...or if they just passed out from their binging :huh: ).

Yeah...we need breaks from scientificness....theres plenty of room for you and the dingos and some goofiness as well. ;)

Tissue transglutaminase at time of dx was literally OFF THE CHARTS - - it was greater than 100 and they don't measure past 100. IT is now down to THREE!!!!!!!!!!!!!!!!

As you can see, I"m over the moon about these results. I really do feel physically great. :)

Wow Susan!! Thats really exciting...I'd be over the moon too. :)

You've come a long way....should be prouda yourself. ;)

My "over the mooness" will come when I can start eating everything again. :P

JUDY - - - - YOU CRAZY LADY - - they're not begging you back because you DO post in here, don't you?????? OF COURSE WE WANT YOU HERE YOU NUT!!!!!!!!!!!!!!!!

What is this???? :blink:

Judy...you know we love you :wub: ....and YES...we do want you here!!! Its nice when you visit...but its even nicer whaen you stay awhile. :)

happygirl Collaborator

Andrea, I think the other 'unresolveds' are Judy and Patti....I think Patti's is at least more manageable with the diet, whereas Judy's is up in the air (is that somewhat, kinda, maybe, sorta ;) correct)?

Rachel--24 Collaborator
Lymecentric! :lol:

:lol::lol:

I like that word. :D

Yup..I suppose we can be quite Lymecentric around here at times. :lol:

Donna...very cute avatar.

This is a premature post so sorry if you've answered but whos the little boy??

All the new pics are great!!

Bev and Patti....those are both really nice pics. :)

I always like black and whites for some reason. I change alot of my photos to b&w cuz they just have a whole different "feel" to them.

Rachel--24 Collaborator
Does anyone know what time Rachel's appointment is...I'm sort of excited about this one for some reason. :P

My appt. was at 4. I was excited about it too!!!

I havent posted about it yet because for some reason I'm sooo incredibly brain-fogged right now. :huh:

I've been pretty spacey all day...so yeah...I'm kind of having a hard time just posting regular stuff... let alone scientificness. :unsure:

Heck...I dont even think I can remember anything that happened that long ago....its been like 4 hours now...much of it is lost in space. :rolleyes:

I'm gonna post about it tomorrow...when I'm not feeling like those weed eating pigs must have felt. :P

diamondheart Newbie
Dear Claire,

You know how you were saying I might have a magnesium deficiency? Well, would you feel better on days you eat chocolate by any chance? I have noticed this. It does not make a lot of sense. I knew if anyone, you might know this.

I am sure you will be pregnant before you know it! Maybe acupuncture could help. There are many alternative therapies that help fertility. I have already planned to adopt because of my health situation. I would like twin girls from China. Mei-Li and Mai-Ahn. That will be their names.

Jin, I notice the chocolate craving more when I'm PMSing. If I take magnesium instead of eating chocolate, my craving for chocolate goes away. But of course, it's much more fun to eat chocolate :lol: .

I've been doing acupuncture for over a year and a half. I'd love to adopt, but DH won't go for it.

I think I'm pretty scared at the prospect of doing long-term treatment for Lyme because I was just about to start fertility testing and maybe treatment. I feel like if I get diagnosed then that is going to go out the window and I turn 40 in November. :(

Mtndog, welcome to the 40 and fertility challenged club! Yeah! Someone who can relate to what I'm going through! Well, I'm about to embark on IVF myself :o . I said to a friend of mine who is also going to do IVF that no woman in her right mind would do IVF. She replied that no woman in her right mind would raise children :lol: . I had to laugh at that!

Yah know, celiac can do a number on fertility too. I'm going to see a "birth intuitive" tomorrow. I'm curious what she will say. She already talked to me about celiac and mercury. I told her I don't eat gluten, so that's covered.

Getting myself well has to come first right now....but I have incentive...because I do want to have kids.

Ditto. That's been my whole incentive for this whole treatment thing I've been going through. Dr. F keeps asking me why I waited so long to get pregnant. I keep forgetting to give him the laundry list of health problems I've been trying to treat first, not to mention waiting till almost 39 to get married!

And who knows- maybe this is the cause of my infertility. I guess I'm MORE scared of the treatment than anything else!

I don't feel like I can wait any longer to get pregnant, before my fertility takes a nose dive off a cliff!

Loving all these cute, old pictures!! Did everyone go out and buy a scanner, or what???? what do I do to scan my old things?

My Dad scanned ALL of our old pics and sent them to us on celiac disease. So all I have to do is pop his celiac disease in and find some hilariously old photo of me. One of these days, I might actually put a picture up of the real me.

Did you just read that? Everytime I type in C_D, it substitutes it with celiac disease! What a weird board this is sometimes.

Claire

Rachel--24 Collaborator
I luckily love my dr.....and for me to say that is a huge, huge, huge accomplishment.

Laura...Its soooo great to read this!! I'm very happy you're comfortable with your Dr. It really is a great accomplishment.

It seems we're all pretty happy with our Dr.'s as we've been getting all the answers and getting on that road to regaining our health. B)

That in itself is definately a HUGE accomplishment for all of us. I think alot of us have been so discouraged and hurt by our previous Dr.'s.

I had so much anger towards Dr.'s before this past year. Alot of my earlier posts reflect all of that but now I feel free from it and yeah...I LOVE going to see my Dr.'s. :)

I so much look forward to it and never once have I left an appt. crying because of the way I was treated or because I'm afraid noone will ever take me seriously...let alone figure out whats wrong with me. It was such a bad time for me and I'm glad we're all moving forward!!! :D

I don't care what it is any of us have, but I just want us all to KNOW so we can deal with it. I thought I was the least likely Lyme patient...and then I met numerous people like me (food issues) at my doctor's.

Exactly....I just want everyone to know what they're dealing with and to have the right Dr.'s to treat it. I want all of us to be well again. :)

I actually did think I could have Lyme and I had requested testing for it a long time ago. They refused to test me but it all worked out because they wouldnt have used Igenix and they werent the right Dr.'s for me.

I only suspected it because of my love for camping and outdoorsey things. I didnt think of it causing the food issues or chemical sensitivity at all.....I was totally shocked that my Dr. wanted to test me for Lyme immediately....based on those symptoms. That was the biggest surprise to me. :huh:

Today is not a good day (I think I started a flare last night)....but I'll update everyone later. In general, though, I do have some good things to report.

Hope you feel better for the weekend...I cant wait to hear your update. :)

Rachel--24 Collaborator
Andrea--That was nice to say about the "family" being back together :D I never actually left, as you know, I just lurked and read along. :P I love all you guys :wub: we've been through a heck of a lot together!

I think of us as a family too....its really amazing how close I feel to everyone here. :wub: We truelly have been through alot together and we've really formed a strong bond. Its great....and yes...I'm glad to see everyone posting here again. I missed you guys. :)

DingoGirl Enthusiast

last pop-in before bed....

was goign to edit/erase part of my wacky posts :ph34r: because TOO MUCH goofball came out in those...and then I read THIS:

We love your entertaining stories about yurt-dwelling druggies and weed eating pigs :lol:

....and then this - -

I'm gonna post about it tomorrow...when I'm not feeling like those weed eating pigs must have felt. :P

:lol::lol::lol: and I just cracked up......and felt that I had to point out that I think they were Weed-Eating African Tweedle Pigs (right, Bev? ;))

anywho, BTW I am SO glad Bev has found her way back here! I think you really need it, girl. Lots of support here and you can get to the bottom of things, hopefully.

And, can I just say, that Laura looks like a freaking SUPER MODEL in taht photo? :) really gorgeous!

I have only scanned and read things briefly......must catch up later (catch up???? :huh: right...)

cannot......get.....sucked.......back.....into the vortex..... ;)

AndreaB Contributor
OMG - - I'm goign to get kicked out of Rville just as soon as I'm back in........

I do miss the family-ness and pajama party that we have here!!!! But - - I don't have Lyme or anything else exotic - - in fact have never been healthier - - - okay - - a moment of scientifness here - - am going to post the latest results from my 14-month followup visit to GI:

You'll never get kicked out. We've missed you and hope you are back to stay. As Rachel said we dont' think I have lyme. I do think we have a minor/medium mercury problem which we are tackling with removal to start off with this fall.

Your test results......YIPPEE!!! You must be so excited! :)

Andrea, I think the other 'unresolveds' are Judy and Patti....I think Patti's is at least more manageable with the diet, whereas Judy's is up in the air (is that somewhat, kinda, maybe, sorta ;) correct)?

Thanks Laura. :)

I still think Judy is battling lyme and or co-infections......just my opinion though mind you. :)

Patti......not so sure but I wouldn't mind her getting tested for lyme just to rule it out. It's a slim chance but it is a chance.

I'm gonna post about it tomorrow...when I'm not feeling like those weed eating pigs must have felt. :P

:lol::lol:

Hope you don't forget. :) You can post in snippets throughout the day if you remember something you forgot to mention though.

AndreaB Contributor
I have only scanned and read things briefly......must catch up later (catch up???? :huh: right...)

cannot......get.....sucked.......back.....into the vortex..... ;)

:lol::lol:

Don't bother catching up, just jump back in. You can ask any questions you have.....no one will mind. :)

Don't stay away too long. As Rachel said, we love your stories and goofiness.....but we are also here for your seriousness and just thereitness. We love you all ways, not just funny ways. :wub:

Rachel--24 Collaborator
I still find it interesting that gluten seem to be the main first intolerance out there and then everything else pops up.

Andrea...I've read alot about this. Gluten intolerance is so common in this type of illness...and in Autism as well.

There is a ton of info which says that mercury disables the enzyme which breaks down gluten and also casein. After that it causes chronic imflammation of the gut....which leads to leaky gut...which leads to gliadin and casein leaking into the bloodstream....which leads to an immune response.

I'm sure other neurotoxins...including Lyme can also inhibit enzyme function. Mercury is the most studied....and especially with regards to Autism.

I posted some good articles about this before but I'm much too brain-fogged to find them right now. :P

Heres some stuff....not as easy to read...but still basically the same point.

A direct mechinism involving mercury
Rachel--24 Collaborator
I'm thinking it may have been the few slices of banana she tried yesteday. I just don't know if it's capable of causing the intense pain she had. She could barely walk because of it. She has a very low pain threshhold.

Awww...poor T. :(

I hope shes feeling alot better today.

Stupid banana. :angry:

Rachel--24 Collaborator
I still don't know how Rachel can keep so much straight with all the brain fog. :blink:

Ummm...she cant. :P

Rachel--24 Collaborator
This is me and my boyfriend Timmy, lol.

Awww...mystery solved. :lol::lol:

How cute. :)

Cant wait to see the wedding pics. :D

Rachel--24 Collaborator
Co-infections is also a clinical diagnosis. My babesia tests came back negative, yet I was diagnosed with it based on symptoms that are clearly babs. I'm sure your LLMD knows this, but it wouldn't hurt to familiarize yourself with some of the coinfections and their symptoms. :)

Yup...my coinfections test was negative but ART reveals Babesia. <_<

I asked my Doc tonight what he thought about ART.

He said he always prefers to actually *see* something definate...he prefers clinical laboratory results but because of the nature of these diseases its just not always possible. He does value these other more alternative methods of testing.....which may pick up what cant be found in the blood.

We discussed Babesia in particular....I told him even though my bloodwork was neg. I could have a different strain than what was tested.

He agreed....there are 20 strains of Babesia and we're only able to test for 2 of those strains. So yeah...that leaves 18 strains not even available for blood testing. He said from a clinical standpoint he feels I have Babesia....but its nice to have it confirmed with stuff like ART and BioSET.

Archived

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


  • Celiac.com Sponsor (A19):
    Food for Life



  • Member Statistics

    • Total Members
      130,341
    • Most Online (within 30 mins)
      7,748

    Norine Miller
    Newest Member
    Norine Miller
    Joined

  • Celiac.com Sponsor (A20):
    GliadinX


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Daura Damm



  • Upcoming Events

  • Posts

    • somethinglikeolivia
      Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!
    • Scott Adams
      Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage. Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone. You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life.
    • Wheatwacked
      While a definitive causal link remains unclear, vitamin D's known role in immune modulation and intestinal barrier integrity suggests that it plays a significant role in the development and progression of celiac disease.  Reduced 25(OH)D levels are associated with celiac disease.  In celiac disease, gluten can damage these tight junctions, and vitamin D may play a protective role in this context. 
    • Ginger38
      I have posted a lot on here and find that the support , advice and information here is much more helpful than anything else.. ever. I am really tired of the back and forth advice in the medical community and I am beyond frustrated and over all of it currently. I will try to keep this as brief as possible. I have positive TTG IGA antibodies - and I have had these every time I have been tested. The first time they were positive I was told I did not have celiac and couldn't have celiac but I was gluten intolerant and to go gluten free. I did this for about 3-4 months, dedicated I might add, and I did feel better. However, my blood glucose went up drastically and since I was already pre-diabetic and insulin resistant already, I was then told to stop the gluten free diet and resume eating gluten as it would be better for my diabetes.I have been on a yo yo diet and roller coaster since between the gluten free and not gluten free. I decided to see a gastro doc and after him promising me I had celiac based on all my symptoms and positive antibodies but we needed that actual diagnosis in order to be treated correctly, and we just needed the EGD with biopsies to have that diagnosis, I reluctantly agreed to go fully on the gluten challenge for 8 weeks prior to having an EGD and colonoscopy, both with biopsies . The gluten challenge was miserable. At first I was horribly constipated, I gained 9 pounds during the challenge, had horrible swelling issues, terrible bloating, looked and felt pregnant, had rashes and itching, couldn't stay awake, had extreme brain fog, exhaustion, speech difficulties, palpitations, tachycardia , menstrual issues, had an insatiable hunger, mood swings, just all the things. All of this to get the tests and biopsies done and they looked "okay" .. so even though I was told to live like a celiac all of the sudden I am no longer at risk.. I am just gluten intolerant.  I also have uncontrolled diabetes that they feel is made worse by the gluten free diet, so again after all these tests, but having all the symptoms and still having positive antibodies I feel like I am stuck with the choice in regards to my health of addressing the diabetes or the celiac (still don't believe I am not actually Celiac).  So I have been having gluten off and on to try and manage my diabetes, even though most recently, because I have been so physically sick again (that can't be good for diabetes either right??)  with stomach pain, burning, diarrhea, stools that are yellow in color and contain mucus, nausea, some vomiting, sour stomach, I was told I need to just eat gluten free so my stomach will improve, and we will just put you on insulin - I don't want to go on insulin yet, and especially if I do not actually have to. I don't understand why I am backed in this corner of feeling like I have to choose to eat for my diabetes or my stomach, but not both, but I am over it.   So currently in regards to GI symptoms - I consistently have nausea, vomiting, diarrhea, abdominal pain, gas , bloating, reflux, sour stomach, yellow stools with mucus.  I am also exhausted and have been itching. I have been having increased swelling, pain, and horrible numbness and tingling, especially in my hands. I am also having an increase in relentless nightmares and night terrors. I have also been having chest pain and palpitations and tachycardia. I have even tried taking digestive enzymes to help break down gluten - (specifically the Gliadin X) and they just seem to make me feel worse. I have trouble with digestion of things like salads, beans, broccoli, etc. on a good day, and that is even worse when I have gluten on any kind of semi-regular basis.   I just can't keep doing this. Mentally, physically and emotionally I am just DONE. I already have a lot of stress in my life.. I am a single mom to a daughter who has her own health issues and is somewhat special needs. I need to be 100% to be what she needs from me, especially with all the running back and forth we have been doing to the doctors and hospitals. So I am no doctor... but I just don't think they are right about any of this. I truly feel I am celiac.. and either the damage just wasn't bad yet, or they just missed the area that has damage, or its all a precursor to full blown celiac (kind of like pre-diabetes/insulin resistance is for actual diabetes). I don't want to live miserable and feel bad all the time. I also don't want my diabetes to be so out of control I have major complications, and I don't feel like insulin is a great option if not truly needed. At this point, if I ever feel like I have a somewhat clear path of what I am dealing with,  I feel like I am looking at MONTHS to YEARS of trying to heal my body. Please help!
    • Ginger38
      No, I have not been checked for any other deficiencies or issues. No one will check these things since my EGD looked normal and there was no damage. I recently saw my gastro doc and it is just frustrating. I have diabetes, which is basically uncontrolled, and I keep being told, stop eating gluten free, because the gluten free diet is contributing to my diabetes worsening. Then I am told oh just eat gluten free and you can go on insulin, which I don't feel like is a good answer either. So I end up eating gluten because they tell me it's okay or that I should bc of my diabetes. I am so sick today - physically mentally emotionally - just tired of this roller coaster ride.  I am open  for any realistic advice... I feel like I get more support here than in real life 
×
×
  • Create New...