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

Results....

kristenloeh

Recommended Posts

kristenloeh Community Regular
kristenloeh
Posted
  • Author

Well, looks like I am already having my first complication with the Open Original Shared Link. Was diagnosed with Diabetes Insipidus, so I have to start a new hormone treatment ASAP and keep a VERY close eye on my sodium/electrolyte levels. Awesome.

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

Celiac.com Sponsor (A8-M):


  • Replies 87
  • Created
  • Last Reply
Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Not exactly what you were hoping for there then.

Good to hear they got it all out though. Maybe you will have more pieces of the puzzle, to help you get back to health.

I am rooting for you here, take it easy

Mw x

Loey Rising Star
Loey
Posted

Well, looks like I am already having my first complication with the Open Original Shared Link. Was diagnosed with Diabetes Insipidus, so I have to start a new hormone treatment ASAP and keep a VERY close eye on my sodium/electrolyte levels. Awesome.

 

So sorry to hear you have another illness to deal with. But it's a good thing that they caught it. Continuing to keep you in my prayers!

 

Sending extra positive energy, healing (((hugs))) and love,

Loey

Guest Sequand54
Guest Sequand54
Posted

I'm sorry to hear about the complications of the surgery. You are such a brave soul and we are all hoping that your overall health will get better soon.

Loey Rising Star
Loey
Posted

Continuing to keep you in my thoughts and prayers!

 

Love & healing (((hugs))),

Loey

  • 2 weeks later...
kristenloeh Community Regular
kristenloeh
Posted
  • Author

*hugs* Thanks all. The Diabetes cleared up fairly fast. I ended up going into adrenal failure about a week after the surgery. Was able to come back from that. Now I am dealing with a gnarly sinus infection. So much pressure I feel like my face/head may burst!! Took anti biotics but still in a good amount of pain so I'm trying to see what's up. I can't keep coughing like this because if it gets any worse, the coughing can mess up the surgery and I can get a spinal fluid leak, and this infection can spread to my brain if it doesn't go away soon. Uhg!! Hope you're all doing well! <3

Loey Rising Star
Loey
Posted

I am SO proud of you! Hang in there sweet lady. I hope they're still giving you cough medicine. We're all keeping you in our hearts and thoughts! 

 

Sending Love, (((Hugs))) & Prayers,

Loey

 

P.S. Will PM you a longer message over the next few days.

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

Celiac.com Sponsor (A8-M):


  • 1 month later...
kristenloeh Community Regular
kristenloeh
Posted
  • Author

Hope you're all doing well. I had to see an ENT these last two weeks to see why I'm still in SO much pain. Looks like there is a lot of tissue built up from the brain surgery, so guess what! I get to have ANOTHER surgery on July 3rd. Go me!! >.<

kareng Grand Master
kareng
Posted

Hope you're all doing well. I had to see an ENT these last two weeks to see why I'm still in SO much pain. Looks like there is a lot of tissue built up from the brain surgery, so guess what! I get to have ANOTHER surgery on July 3rd. Go me!! >.<

 

 

Lucky you!  At least you know you are more than just a pretty face.....you have something in your head besides fluff!  :D

 

 

Maybe a little laugh? :ph34r: 

GottaSki Mentor
GottaSki
Posted

Yep...Go You.

 

This news SUCKs....but your new picture is beautiful!

 

Hang in there :)

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

Well, let's hope at least that you get the pain sorted out this time round.

 

Good luck, let us know how you go

 

Mw x

kristenloeh Community Regular
kristenloeh
Posted
  • Author

Thanks guys! Just hoping I'm feeling my best soon after because I'm supposed to DJ in July as well and also go to a show shortly after the surgery and I am NOT missing it! I may fit in better at the show with my nose all bloodied anyway, lmao.

  • 4 weeks later...
Loey Rising Star
Loey
Posted

How are you feeling? Sending healing (((hugs)) & love!

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. CatS
      - CatS commented on Scott Adams's article in Winter 2026 Issue
      5

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

      Thank you! It’s very easy to make seedy crackers. They are much more nutritious than commercial gluten free bread,
    2. Samanthaeileen1
      - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve. thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poo...
    3. Wheatwacked
      - Wheatwacked replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      My son was diagnosed when he was weaned in 1976 after several endoscopies. Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree. Whether an endoscopy is positive or negative is irrelevant. That may happen even with endoscopy. Pick your doctors with that in mind. In the end...
    4. RMJ
      - RMJ replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1. Genetic testing. Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With...
    5. Samanthaeileen1
      - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      5

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      here are the lab ranges. Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,800
    • Most Online (within 30 mins)
      7,748
    CPeck
    Newest Member
    CPeck
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Wheatwacked · Posted

      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By RMJ · Posted

      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      Just diagnosed today

      By JoJo0611 · Posted

      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
×
×
  • 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.