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

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I wanted to encourage all of you to send out that petition to friends to be signed. Even those who don't have Lyme are certainly at risk and would want treatment available.

I would like to encourage this as well.....I'm having everyone I know sign it.

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

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
AndreaB Contributor
AndreaB
Posted
Andrea, Chloe tested positive with Enterolab. We are going to be doing a gluten challenge with her over Christmas break. We had not seen the improvement with her that we had expected to see, so now that she's been gluten-free for a few months, it's a good time to challenge it. She never had the biopsy.

I may have confused you because sometimes I say celiac instead of gluten intolerance, which is more accurate for Chloe and I.

Ok, I can see why you would think she is most likely to have lyme. It is a definate possibility. She sounds like she feels like my daughter about blood draws.

Are you thinking of getting her tested?

My family all had low numbers with enterolab but we all have at least one celiac gene so we will remain gluten free.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
by the way, how long did it take everyone's results to come in?

Two weeks for me but the lab is right by my Dr.'s office....it might have made things a little quicker.

CarlaB Enthusiast
CarlaB
Posted

I'm going to wait and see what the doc in NY says. With Chloe's learning disabilities, which aren't easy to pin down, I'm thinking she might have Lyme brain. I thought she had gluten brain, but it didn't make a difference.

Morgan is sensitive to gluten, it makes her have seasonal allergies. Maybe it's not a true intolerance, but just something complicated enough for a person to handle that it pushes her over the edge with the allergies. I don't know ... maybe she has Lyme, too. Actually, they all could, except for Jack, who was adopted.

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

Carla,

It would be smart to get the kids tested. The LLMD should be able to tell you how to proceed. I think they could all have it if you had Lyme during all of your pregnancies. I think eventually something could tip the scales and one of the kids could start developing symptoms. It sucks to think about it....but at least you will know what it is and how to deal with it...if something like this ever happened.

I'm curious about what the LLMD will say about this.

AndreaB Contributor
AndreaB
Posted
I'm curious about what the LLMD will say about this.

Me too.

nikki-uk Enthusiast
nikki-uk
Posted

..signed the petition :)

CARLA!!! OMG another member of the Lyme clan??? :o

I'm glad you finally have an answer..but ,gosh, how long doyou think you've had it??

...and the kids need testing?? :unsure:

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

Celiac.com Sponsor (A8-M):


Green12 Enthusiast
Green12
Posted

Just flying through:

Carla, omg!!! Congratulations on the diagnosis, I am thrilled for you. You finally have answers to what you have been fighting with all these years, what validation! Now you can start your journey to getting better!

Rachel, I really can't thank you enough for posting about getting your body temp up and keeping warm. My temp always bottoms out, but sometimes I forget about it, your posts reminded me to be conscious of that and to take measures to get my temps up and stay warm :D:D:D

Andrea, sorry about Seth and the bump on his head :( Hope it gets better soon.

I have a bioscan appt tomorrow so hopefully I will have something to report about my lyme testing perdicament, fingers crossed.

Hope everyone has a great day!!!

:wub:

happygirl Collaborator
happygirl
Posted

x

AndreaB Contributor
AndreaB
Posted
I have a bioscan appt tomorrow so hopefully I will have something to report about my lyme testing perdicament, fingers crossed.

Looking forward to an update tomorrow. :D

CarlaB Enthusiast
CarlaB
Posted

I had the complete Lyme panel done ... don't remember the number.

I'm wondering about the kids, too. Someone asked how long ... I believe since 1972-1975 -- it fits with the onset of the symptoms and the exposure to massive quantities of ticks. So, I would have had it before any of my pregnancies. I am curious what the doc would say because if antibiotics cannot get rid of all the bacteria and if they are not having symptoms, it doesn't seem that they would need treatment at this time, but it's a good thing to know for the future. I think Chloe will probably need treatment ... I'm betting her learning disability -- which is something they can't really pinpoint -- is probably Lyme brain. If her brain works half as bad as mine, I can see why she's having problems. Good thing I started out smart! :P

happygirl Collaborator
happygirl
Posted

andrea...don't you worry, I will DEFINITELY get my hands on the report!

carla...you prob also had the 6050 Open Original Shared Link

CarlaB Enthusiast
CarlaB
Posted
carla...you prob also had the 6050 Open Original Shared Link

Yes, that's it.

That would be nice, if you knew before Christmas. IGeneX sent me a paper saying they got it on the 16th, then it was done on the 30th, so after exactly two weeks, have your doctor call and ask them to fax the results.

Lymetoo Contributor
Lymetoo
Posted
I had my appt with my doc today....um....yeah........ ;) He was old, disorganized, slow, confused.....I was there for SIX HOURS including 30 min to fill out paperwork, 1 hour to wait (appt was at 1030, i wasn't seen til like 1140), then took over 2 hours for them to figure out what bloodwork and tests were needed and then took 10 vials of blood, have to back in later this week to pick up more tests and go back next week for more blood, and then they couldn't figure out the billing. It was like the never ending day from HELL!

Was this your LLMD??? :blink: Could you PM me your location?

dlp252 Apprentice
dlp252
Posted

Okay so I haven't had time to go back and read...someone please keep cliff notes for me for when I get home!!! Please...I'm on my friends dollar, so can't spend a lot of time here...but from what I scanned on this page CARLA HAS A DIAGNOSIS!!??!!! Wow!!! Incredible. Speechless!

Just logged on to say greetings from Costa Rica...actually we set sail a while ago, so we're back in the Caribbean sea somewhere on our way to Grand Cayman. We went through the Panama Canal (partial) yesterday...it was great!

Okay, gotta go. Miss you girls and guys!

dlp252 Apprentice
dlp252
Posted
OMG--I hope Donna's alright! Did any of you see this? She's in the Caribbean, too.

Open Original Shared Link

There's gotta be more than one ship there--right? :unsure:

Okay so I'm randomly scanning pages here and there for a few more minutes, lol, and came across this. Patti, thanks for caring!!! They are being SOOOOOO very diligent on board about this very tbing. All passengers have to use a hand sanitizer BEFORE coming on board, BEFORE entering the restaurants and buffet and just about every other public place. This is the strictest I've ever seen it--wasn't like this on my other two cruises, but this time they follow people and MAKE them use it, lol. My friend and I are pretty diligent about using sanitizing wipes anyway, but I'm happy to see this.

AndreaB Contributor
AndreaB
Posted

Donna,

So glad you are safe and having a good time. :D

Can't wait until you get home, but it sure is nice of you to drop in. :)

happygirl Collaborator
happygirl
Posted

Aw, Donna, I am happy you are having such a great time!!!!!!!

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

I'm back from Bioset. My appt. went well....it was a much longer appt. because she had to retest everything.

I have alot to share but I'm WAY tired right now. I think I might go to bed soon. -_-

happygirl Collaborator
happygirl
Posted

Rachel, I'm happy to hear your app't went well! I am sure you are exhausted!!!!!! Get some rest...we'll be here when you post ;)

happygirl Collaborator
happygirl
Posted

x

AndreaB Contributor
AndreaB
Posted

Rachel,

We'll be waiting for your post when you are rested and able to post about it.

:wub:

happygirl Collaborator
happygirl
Posted

x

CarlaB Enthusiast
CarlaB
Posted

-

happygirl Collaborator
happygirl
Posted

x

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. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      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...
    2. MichaelDG
      - MichaelDG posted a topic in Board/Forum Technical Help
      0

      celiac.com support

      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      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
      8

      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
      133,327
    • Most Online (within 30 mins)
      7,748
    dnamutant
    Newest Member
    dnamutant
    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

    • 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! 
    • MichaelDG
      celiac.com support

      By MichaelDG · Posted

      How do I contact someone at celiac.com concerning the cessation of my weekly e-newsletter? I had been receiving it regularly for years. When I tried to sign-up on the website, my email was not accepted. I tried again with a new email address and that was rejected as well. Thank you in advance!
    • 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.