Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    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

Link to comment
Share on other sites
  • 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? :)

Link to comment
Share on other sites
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!! :(

Link to comment
Share on other sites
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. :)

Link to comment
Share on other sites
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.  

Link to comment
Share on other sites

Archived

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



  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,072
    • Most Online (within 30 mins)
      7,748

    SherryT
    Newest Member
    SherryT
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Nacina
      Well, that's a big question. When he was seeing the nutrition response testing dr. that changed each time we went in. He hasn't been seeing him regularly for theist ten months. When he had a horribly week in March I started him back on the 4 that were suggested to keep him on. Those are: Standard Process Chlorophyll Complex gluten-free, SP A-F Betafood gluten-free, SP Tuna Omega-3 Oil gluten-free, And Advanced Amino Formula. He also takes a one a day from a company called Forvia (multivitamin and mineral) and Probiotic . Recently he had to start Vitamin D as well as he was deficient.  
    • Fluka66
      Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  
    • knitty kitty
      Welcome to the forum, @Nacina, What supplements is your son taking?
    • knitty kitty
      @BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/
    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
×
×
  • Create New...