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
Gin
Posted

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
Mtndog
Posted
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
TriticusToxicum
Posted
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
dlp252
Posted
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
DingoGirl
Posted

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
dlp252
Posted

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
TriticusToxicum
Posted

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
Rachel--24
Posted
  • Author

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
DingoGirl
Posted

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
AndreaB
Posted

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
Green12
Posted

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
AndreaB
Posted
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
Green12
Posted
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
AndreaB
Posted
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
Green12
Posted
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
Rachel--24
Posted
  • Author

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
AndreaB
Posted
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
dlp252
Posted
Doesnt Donna have an appt. today? Who else?

Yep, me at HealthNow after work.

dlp252 Apprentice
dlp252
Posted
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
Mtndog
Posted

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
TriticusToxicum
Posted
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
happygirl
Posted

x

DingoGirl Enthusiast
DingoGirl
Posted
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
jerseyangel
Posted

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
dlp252
Posted
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.

Go to topic listing

  • 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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.