Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something


Rachel--24

Recommended Posts

Gin Newbie

Thanks,

I dont know anything about compounding pharmacies but will call around tomorrow. If this is something I need to do long-term I'm wondering if it costs more or does insurance cover it the same?

I have other problems as well as Gluten related stuff. From another support group they recommended a compounding pharmacy with a phone # 1-800-728-0288. Pharmacist name is Pete. Sorry don't know what city they are in but maybe he can answer your questions re: thyroid meds.


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



Celiac.com Sponsor (A8-M):



  • Replies 33.4k
  • Created
  • Last Reply
Mtndog Collaborator
How about eating it while you're in the tub? That way you never get THAT cold....?? B)

warm jammies huh? like what..... long johns? :P

-Dave

Oh my- My emoticons detect flirting and spatting! :P

And long Johns are AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

SUSIEQ_ Are you out there? Are you OK?

TriticusToxicum Explorer
Oh my- My emoticons detect flirting and spatting! :P

And long Johns are AWESOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

SUSIEQ_ Are you out there? Are you OK?

Nothing beats flannel jammies right from the dryer! :rolleyes:

dlp252 Apprentice
Managed to get my blood work todya after THREE tries and let me tell you, that was like summitting Everest without supplemental oxygen. I cried each time upon discovering lab was closed or there were 15 people ahead of me. HOw crazy, to cry over that but I just had NO stamina and the world just looked hazy adn blury and my head felt full of cotton. So.....I looked at my lab slip. I"d asked the doctor to test ALL thyroid, T3, T4, everything, and she had not checked those boxes. :angry: So I DID. Harumph.

Of course we feel sorry for you, or along with you anyway. I personally KNOW what it's like to KNOW you shouldn't do something, but are compelled by some inner thing to do it.

About this blood work thing...that really frosts me. I've had the same thing happen to me and have THOUGHT about checking the boxes myself but have never actually had the courage to do it. Good for you! I've never been tested for the full thyroid panel even though I have a lot of symptoms that COULD fit with thyroid issues. I just don't understand it. This is another thing I'm hoping the HN doctors will do...test for the FULL panel.

Donna, they are ripping you off. Check another place.... MAX you should pay is like $60-75 an hour for labor, and your strut job for BOTH should only take like 2-3 hours MAX. Total labor should be like $200-250. PM me if you need anymore info...

Thanks! I can't remember what their hourly rate is, I'll have to look. On Saturday they probably worked on my car from 8:00 to 4:30...I had to have a door lock actuator replaced (well, didn't HAVE to, it worked manually, lol), and it was a major servicing (90,000 miles), plus the timing belt...I wish I could remember their hourly rates.

I'll call them to find out what the struts cost and then see how that works with the estimate they gave me.

DingoGirl Enthusiast

Good morning everybody, am reading these things in just the SLIGHTEST fog........and thank you, of course, for your sweet thoughts and wishes. BUT, GUESS WHAT HAPPENED???

NOTHING! :o

Absolutely nothing, no D, not even a poop yet, no gas, no tummy ache, NOTHING. I was asleep by 10, up at 7, and was expecting a siege around midnight (my reactions are about 12 hours later).

WHAT IS UP WITH THIS???? how could NOTHING happen??? I am so so so confused....... :huh:

still pretty tired though. might have to slip back into bed for a few.

you guys are awesome.....brain is in such a fog so I don't remember who is doing what....appts. this week, Laura started her new job and they are wonderful? BEv's seeing a.....physiatrist? psychiatrist? what wasit? and is our Rinne gone now? I am confused.....

*yawn* not sure I should be awake yet.......

dlp252 Apprentice

I have other problems as well as Gluten related stuff. From another support group they recommended a compounding pharmacy with a phone # 1-800-728-0288. Pharmacist name is Pete. Sorry don't know what city they are in but maybe he can answer your questions re: thyroid meds.

Just wanted to say hi! You were really brave to go back to April, lol! Welcome to our little thread!

Rachel, looking forward to hearing about your appointment today!

Laura, great first day on the job!!! Hopefully it won't be so exhausting from now on...I think first days tend to be like that even in the best of health, lol. :P

Julie, I agree, accupuncture counts, lol. I was tested through Enterolabs too...definitely worth it in my case.

Susie, morning! Don't get too excited about the lack of reaction. Trying to remember back to my Krispie Creme fiasco a few months ago...I think it hit me almost two days later...course I only had half a donut. :P

For you the brain fog is probably a LOT worse because of it though.

Bev, yay on the testing.

TriticusToxicum Explorer

Good morning everybody, am reading these things in just the SLIGHTEST fog........and thank you, of course, for your sweet thoughts and wishes. BUT, GUESS WHAT HAPPENED???

NOTHING! :o

Absolutely nothing, no D, not even a poop yet, no gas, no tummy ache, NOTHING. I was asleep by 10, up at 7, and was expecting a siege around midnight (my reactions are about 12 hours later).

WHAT IS UP WITH THIS???? how could NOTHING happen??? I am so so so confused....... :huh:


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



Celiac.com Sponsor (A8-M):



Rachel--24 Collaborator

Just a drive-by....wanted to say hi to all!

OMG...work is killing me!! I'll be glad when the stupid Show & Tell is over. :angry:

The store is "suppossed" to look like a picture in a magazine....throughout. Right now its looking like a tornado went through. :blink:

I'm embarrassed for my store. :ph34r: My dept. and the produce dept look good but I hope the rest of the store catches up. Only one day left. :unsure:

Julie...it is Bioset that I'm doing today. I went to the website to printout my new patient forms and saw the info. about the test. I guess its exactly what you had done. My appt. will last for 1 1/2 hours....I may have to go to bed right after cuz of having to get up really early but will let everyone know ASAP.

Doesnt Donna have an appt. today? Who else?

DingoGirl Enthusiast

Um, did I even bother to mention in my post what I did? that I ate three donuts? yeah. that's right.

still nothing. go figure. Yes Richard, DONUTS ARE GOOD FOR US!!!!! :)

AndreaB Contributor

Susan,

Hope you don't get too sick from this.....of course if you need to be sick to avoid gluten, well then, I would hope you'd get sick enough to realize you can't go back to gluten. :o:ph34r:

You aren't going to think gluten won't hurt you are you? :unsure:

Green12 Enthusiast

Thanks everybody for all the input about Enterolab testing. I didn't realize they did it all through poop, er, stool sample :lol: I was thinking it was blood draws for some reason.

I am thinking about doing the whole shebang option, but I am confused as to if it also includes soy and egg in it...

Susie, everyone said it all so well last night, lots of love and support to you through this difficult time. Hang in there, hope today is a better day :)

AndreaB Contributor
Doesnt Donna have an appt. today? Who else?

Yep, Donna does and I get T, M and M's allergy/intolerance test results back today.

Who knows when, I'm waiting for a call from a delivery I'm expecting, some frozen food that will be mush if I have to catch him on his way back down this way this weekend. The driver is not usually up here too early. At least the doctor is totally flexible.

Green12 Enthusiast
Just a drive-by....wanted to say hi to all!

OMG...work is killing me!! I'll be glad when the stupid Show & Tell is over. :angry:

The store is "suppossed" to look like a picture in a magazine....throughout. Right now its looking like a tornado went through. :blink:

I'm embarrassed for my store. :ph34r: My dept. and the produce dept look good but I hope the rest of the store catches up. Only one day left. :unsure:

Julie...it is Bioset that I'm doing today. I went to the website to printout my new patient forms and saw the info. about the test. I guess its exactly what you had done. My appt. will last for 1 1/2 hours....I may have to go to bed right after cuz of having to get up really early but will let everyone know ASAP.

Doesnt Donna have an appt. today? Who else?

I forget who's appt is when :lol: Andrea was keeping better track. Oh you, it's you that has the appt Rachel!!!!!

Sorry work is so stressful, hopefully it will all be over soon.

Bioset- I was suppose to start it, but didn't. I just had the NAET. Bioset is based on the same principles but better, so I hear. I'm excited for you :D . It might really help with the over all load of intolerances. Keep us posted.

AndreaB Contributor
I am thinking about doing the whole shebang option, but I am confused as to if it also includes soy and egg in it...

Julie, The whole shebang gluten full for $369 includes malabsorption, IgA antibodies, ttg, genes and inlcuded Dairy when I got it (might still). The soy, egg, yeast are an additional $199.

Well worth it if you can swing it. If you don't want to do the gluten option you can search around and put together what tests will suit you. They have different packages.

Green12 Enthusiast
Julie, The whole shebang gluten full for $369 includes malabsorption, IgA antibodies, ttg, genes and inlcuded Dairy when I got it (might still). The soy, egg, yeast are an additional $199.

Well worth it if you can swing it. If you don't want to do the gluten option you can search around and put together what tests will suit you. They have different packages.

So then it really isn't the whole shebang :lol:

I was hoping it included all the individual tests listed under it <_<

Another question, does it still pick up on the gluten issues after someone has been gluten-free for a long period of time?

Rachel--24 Collaborator

Julie.....it depends on how long is a long time. Over a year...I would say no....under 6 months probably ok...anything over 6 months might be "iffy".

I was 4 months gluten-free when I took the test.

AndreaB Contributor
So then it really isn't the whole shebang :lol:

I was hoping it included all the individual tests listed under it <_<

Another question, does it still pick up on the gluten issues after someone has been gluten-free for a long period of time?

They say their test can pick up the antibodies for up to a year I think. It would probably depend on how much damage there was to begin with and how high numbers would have been.

You've had dairy and lecithin lately (don't know if lecithin would register though). Have you had eggs?

How long have you been gluten-free? Have you had cc issues with gluten recently?

dlp252 Apprentice
Doesnt Donna have an appt. today? Who else?

Yep, me at HealthNow after work.

dlp252 Apprentice
Thanks everybody for all the input about Enterolab testing. I didn't realize they did it all through poop, er, stool sample :lol: I was thinking it was blood draws for some reason.

I am thinking about doing the whole shebang option, but I am confused as to if it also includes soy and egg in it...

I got the egg test...did not show an intolerance in my case. The gene test is done through swabs of the inside of your cheek (on your face, lol).

Mtndog Collaborator

I can't keep track of all these appointments- so Donna good luck with yours today. Let us know what happens. And a big hug for luck!

Dingo- Are you sure that in your fog you didn't mistakenly eat three gluten free donuts???????????? I hope you'll be OK. Don't EVEN think about doing it again though.

Rachel- I'll be glad when the store thing is over for you!

I feel so GRUMPY today. It's been coming and going. Some days I am in a great mood and other days I am such a bi-ach! I don't even want to be around myself. I don't know what it is. I'm psyched we moved but unpacking is a pain (it was fun for the first week). You know how some days EVERYTHING (like putting your underwear on the right way as opposed to backwards!) FEELS LIKE SUCH a BIG DEAL.

Haurumphhhh....maybe I should go get a dog! :D

TriticusToxicum Explorer
You know how some days EVERYTHING (like putting your underwear on the right way as opposed to backwards!) FEELS LIKE SUCH a BIG DEAL.

Haurumphhhh....maybe I should go get a dog! :D

My daughter has the same problem. We buy her the ones with the little bows on the front. It seems to help :)

happygirl Collaborator

x

DingoGirl Enthusiast
Dingo- Are you sure that in your fog you didn't mistakenly eat three gluten free donuts???????????? I hope you'll be OK. Don't EVEN think about doing it again though.

I feel so GRUMPY today. It's been coming and going. Some days I am in a great mood and other days I am such a bi-ach! I don't even want to be around myself. I don't know what it is. I'm psyched we moved but unpacking is a pain (it was fun for the first week). You know how some days EVERYTHING (like putting your underwear on the right way as opposed to backwards!) FEELS LIKE SUCH a BIG DEAL.

Haurumphhhh....maybe I should go get a dog! :D

Bev:

1. I assure you they were from a gluten-donut store.....gluten everywhere...walking in, the smell was heaven...

2. Yes, underwear with bows on front for you.....I am sorry you're so grumpy! you've been through a lot and dang, get that unpacking done so you can at least have a bit of leisure time....to eat donuts and such.

3. Yes, yes, a thousand times yes, GET A PUPPY!!! but then again NO NO NO.....all the training, the cleaning, and the loss of freedom, the ruining of the yard and/or house (shoes at least)....the crying at night for the first few weeks......I don't know. Your life is complicated enough....wait until things settle down a bit, maybe?

Laura - good news! wow....a job like that - - - what a blessing.

Donna - yes, we await news of your appt!

Rachel - is the heinosity over yet?

Andrea - thanks for being so mother hen-ish. :) and I know you'll let us know how tomorrow's testing goes.

What else.....I forget everything else....Julie - there was something....I don't remember. :huh:

Not sick at all from the donuts. go figure. My experiment came out wtih entirely different resutls. Feel pretty fabulous today, in fact.....oh no.........does it mean..........eat more gluten??? :lol:

(jsut kidding) Well....feeling NORMAL today - - yesterday was just off-the-scale bad. I don't know why.

Well I am off to flirt with the guys down the street laying sod and see what they do with leftover gras. ;)

p.s. I did post my funny poison oak story on the "I ate gluten and nothign happened thread. Bev - you will enjoy it. :)

jerseyangel Proficient

Hi Laura--

I'm getting dinner ready--the guys will be home in a minute but when I saw you posted, I had to see how you did today :D

I can well imagine it's taking a toll on you, but at the same time it must be exhilerating to be back in your "element"! I'm so happy that you were able to work something out with this company--and how wonderful they have been to you! I'm just so glad that you didn't have to give up your dream job while trying to figure out your health concerns.

Thank goodness for your mom! What an incredible help she is to you--doing all of the "little things" to make sure you are able to work right now.

Good luck tomorrow! I'm excited for you :D Let us know--even if you're tired just to let us know you're ok ;)

dlp252 Apprentice
3. Yes, yes, a thousand times yes, GET A PUPPY!!! but then again NO NO NO.....all the training, the cleaning, and the loss of freedom, the ruining of the yard and/or house (shoes at least)....the crying at night for the first few weeks......I don't know. Your life is complicated enough....wait until things settle down a bit, maybe?

Don't forget the endless hours of staring they do...they just stare at you, lol.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      46

      Supplements for those Diagnosed with Celiac Disease

    2. - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

    3. - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

    4. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

    5. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.