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

Need Advice, Please!


Niks

Recommended Posts

Niks Newbie

Thank you GFinDC

 

They got to terminal ileum, but couldn't see any problems!  They did say they'd do a pillcam next, I really hope they do as I am convinced her problems are in her small bowel! 

 

xx

  • 4 weeks later...

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



Celiac.com Sponsor (A8-M):



  • Replies 54
  • Created
  • Last Reply
GFinDC Veteran

Any news on the Julie front Niks?  IS she closer to a diagnosis?  Or to a  pillcam and her Hollywood debut? :)

Niks Newbie

She has been dreadful. Admitted for fluids and IV antisickness 3 times over last 2 weeks. Also once for kidney stones!! She's never had kidney stones before!! She also has a UTI poor thing.

She's losing weight rapidly and not keeping any solid food down. Luckily at the moment she is keeping clear fluids down, but this is hit and miss!

Next GI appointment is next Tuesday, but have no dates for pillcam! They're also doing stomach emptying test but haven't got date for that either.

She's being followed up by nurologist after kidney stones, sure that'll be months away!! :(

GFinDC Veteran

Bummer!  Sorry Niks,  These things can be a long road sometimes.  I wonder if any of her meds have kidney stones as a possible side affect?  Are they treating them with ultra sound?

 

It sounds like she might have a blockage in her intestine.  They do have surgeries that can treat that condition.  My brother had several surgeries for his Crohn's and did much better after them.  I had a coworker with Crohn's who had large sections of her gut removed and she did fine afterwards.  She just had to eat small meals more frequently.  That was years ago though and I think they have better drugs available now.  So surgery may not be needed at all.

 

Enteral nutrition is sometimes used to help calm down the immune attack on the gut.  It is supposed to be less irritating and easier to absorb too.  It is supposed to be a kind of stabilizing / healing treatment.

 

Thanks for the update.  I hope and pray that Julie will get relief soon. :)

Niks Newbie

GFinDC - Thank you!  The problem is Jaime has no diagnosis of Crohn's!  They can't 'rule it out' but haven't seen any active crohn's on any scopes.  There are a meters of small intestine that can't be seen on scopes so it is extrememly frustrating!

 

She has previously been on fortisip compact when she hasn't been tolerating solids but as she stands right now she can't keep them down either.  

 

She is just hanging on until next Tuesday, they are going to have to come up with a plan, I think EN might work but they may have to bypass her stomach. Not sure how that's going to go down!  They think the kidney stones were caused through severe  dehydration.  I just hope that she can keep hydrated enough until her appointment.

 

They think that the stones have passed by themselves.  

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. - yellowstone posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Cold/flu or gluten poisoning?

    2. - Churro replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

    3. - Wheatwacked replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

    4. - trents replied to Churro's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      17

      Celiac disease symptoms

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

    • Total Members
      133,063
    • Most Online (within 30 mins)
      7,748

    JTL1976
    Newest Member
    JTL1976
    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

    • yellowstone
      Cold/flu or gluten poisoning? Hello. I've had another similar episode. I find it very difficult to differentiate between the symptoms of a cold or flu and those caused by gluten poisoning. In fact, I don't know if my current worsening is due to having eaten something that disagreed with me or if the cold I have has caused my body, which is hypersensitive, to produce symptoms similar to those of gluten poisoning.        
    • Churro
      I'm no longer dealing with constipation. I got my liver test last month and it was in normal range. Two years ago I did have a vitamin D deficiency but I'm know taking vitamin D3 pills. Last month I got my vitamin D checked and it was in normal range. I don't believe I've had my choline checked. However, I do drink almond milk eat Greek yogurt on a daily basis. 
    • Wheatwacked
      Non-Celiac Gluten Sensitivity (NCGS) can be associated with low ferritin and iron deficiency. Once Celiac Disease (1% of the population affected) has been ruled out by tests the next step is to check for Non Celiac Gluten Sensitivity (10% of the population affected) by eliminating gluten for a trial period, then re-introduce Gluten Challange. Have you been supplementing Iron? How are your liver enzymes? Low levels of ferritin indicate iron deficiency, while  59% transferrin saturation indicates high iron levels.  Possibly indicating Fatty Liver Disease.  Choline is crucial for liver health, and deficiency is a known trigger for Non-Alcoholic Fatty Liver.  Some experts say that less than 10% eat the the Food and Nutrition Board established Adequate Intake that are based on the prevention of liver damage. Severe constipation and hemorrhoids may be linked to a bile or choline deficiency.  "Ninety-five percent of phospholipids (PLs) in bile is secreted as phosphatidylcholine or lecithin."  Fatty acid composition of phospholipids in bile in man   Deficiency of these bile salts causes the bile to get thick. Some people with Celiac Disease are misdiagnosed with Gall Bladder bile issues.  Removal of the gallbladder provides only temporary relief. Whether or not celiac disease or NCGS are your issues you need to look at your vitamin D blood level.   
    • Churro
      Thanks for your input. 
    • trents
      If you have hemorrhoids 1x weekly I don't see how you have time to heal from one episode before you experience another one, unless each one is a very minor event. Have you consulted a physician about your hemorrhoid issue? It's not normal to be having an episode every week unless it is really one episode that is not completely healing between weekly flareups.
×
×
  • 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.