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

Am I Being Shoehorned / Misdiagnosed?


Mordikar

Recommended Posts

beebs Enthusiast

Oh sorry- I didn't read all the thread! So what does hida mean??


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



Celiac.com Sponsor (A8-M):



  • Replies 57
  • Created
  • Last Reply
Roda Rising Star

Oh sorry- I didn't read all the thread! So what does hida mean??

A hida(Heptato Iminodiacetic Acid) scan or cholescintigraphy is a nuclear medicine imaging procedure that evaluates the health and function of the gallbladder and tracks the flow of bile from the liver to the small intestine.

OP, it's not that uncommon for people with celiac/gluten intolerence to have problems with their gallbladders and liver.

beebs Enthusiast

Too true Roda, there is a website that lists 300 associated symtoms and they are both some of them.

IrishHeart Veteran

A hida(Heptato Iminodiacetic Acid) scan or cholescintigraphy is a nuclear medicine imaging procedure that evaluates the health and function of the gallbladder and tracks the flow of bile from the liver to the small intestine.

OP, it's not that uncommon for people with celiac/gluten intolerence to have problems with their gallbladders and liver.

true, true Roda. No gall bladder here. Liver enzymes off and liver swelling pre- DX--but back to normal now.

Mordikar Newbie

Oh i'm not screaming to get off the diet. I'm sticking to it for at least 3 months regardless of the celiac panel results. It's actually not a bad diet for me any how. I ate WAY too much pasta and breads before. Now I'm still eating gluten free alternatives but i eat them far less often and i eat a LOT more veggies and fruits than I used to which is defiantly good for me.

I'm eating fairly normal now, (still kinda small) but I'm not gaining all the weight back because it's not all starches and carbs like i used to eat.

I am finding some nice alternatives. BTW anyone in DFW Texas area, Aleda's Pizza in Southlake make really nice gluten-free pizza.

@Kareng - I haven't had an actual sit down with the gastro since they took the celiac panel and did the sonograms. Just phone calls from office assistants. I will not be leaving the office, when i do have one, without copies of everything. (I am an annoying and assertive patient)

kareng Grand Master

@Kareng - I haven't had an actual sit down with the gastro since they took the celiac panel and did the sonograms. Just phone calls from office assistants. I will not be leaving the office, when i do have one, without copies of everything. (I am an annoying and assertive patient)

Good for you! They will probably give you what you want just to get you out of there! ;)

  • 3 weeks later...
meg1970 Newbie

I was just reading your posts, and saw that you were to have testing done in January. I was curious how that turned out for you. My daughter has been in pain for years and we are finally going to see a ped. gastro the end of the month, for the first time. We had already this week started her on the way to gluten free stuff.. but now I'm worried about testing coming back as a false negative. I don't even know what to expect on this upcoming visit really, since it will be our first time there. I just hope they are a good office, because it took me a couple weeks of looking to find a ped. gastro office, and they are at least 50 miles away. :(


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



Celiac.com Sponsor (A8-M):



Mordikar Newbie

HIDA scan shows my gallbladder operates at 100% efficiency... I could have sworn this was gallbladder.

Celiac panel came back negative. my result was IgA <2 U/mL with 0-3 being negative, 4-10 being weak positive, and >10 being positive.

Due to a job loss testing is on hold till i have insurance again.... but as long as I eat mild things tend to stay pretty calm these days and it is less of a pain and more of a mild pressure / annoyance.

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. - 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.

    2. - 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.

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

      celiac.com support

    4. - 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.

    5. 0

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

  • 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

    • knitty kitty
      @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
      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
      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
      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
      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. 
×
×
  • 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.