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

Question About Sucrose Iron Infusion? Bone Density Scan?


LyndaCanada

Recommended Posts

LyndaCanada Rookie

Hello Everyone

Well, the doctors suspected for months that I have Celiac and today I heard him say the words, are you prepared to go gluten-free for the rest of your life? Wasn't an easy thing to hear, I was hoping they'd say, it was just an infection or it was going away, I don't know what I was hoping. I guess I'm thankful it's not cancer or something worse like that.

So I guess I get to join the official gluten-free Celiac Club.

I am going to go for a sucrose iron infusion next month. I guess my iron levels have hit rock bottom. Has anyone ever had this done? I guess it's supposed to take 6 hours, so I show up at the hospital at 8 am and sit there til around 2:00, fun times. Just wondering what I might expect?

I suppose I should have asked the doctor but why can't I just take iron supplments, anyone know? I also have to go for a bone density test as well.

Maybe someone could explain this all to me, I'd sure appreciate it?

Thanks!:)

Lynda


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

That sounds unpleasant. Did they give you a copy of your lab results?

LyndaCanada Rookie
That sounds unpleasant. Did they give you a copy of your lab results?

Yes, it cetainly does! UGhh!

The weird part is that I've always been borderline anemic for years. I was very suprised that I was going to have to have this done. Unfortunately my GI doctor wasn't terribly talkative yesterday so I didn't get a chance to ask him much. I guess the iron levels must be pretty low since I became really sick in the last 3 months, who knows?

Lynda

nikki-uk Enthusiast
Hello Everyone

Well, the doctors suspected for months that I have Celiac and today I heard him say the words, are you prepared to go gluten-free for the rest of your life? Wasn't an easy thing to hear, I was hoping they'd say, it was just an infection or it was going away, I don't know what I was hoping. I guess I'm thankful it's not cancer or something worse like that.

So I guess I get to join the official gluten-free Celiac Club.

I am going to go for a sucrose iron infusion next month. I guess my iron levels have hit rock bottom. Has anyone ever had this done? I guess it's supposed to take 6 hours, so I show up at the hospital at 8 am and sit there til around 2:00, fun times. Just wondering what I might expect?

I suppose I should have asked the doctor but why can't I just take iron supplments, anyone know? I also have to go for a bone density test as well.

Maybe someone could explain this all to me, I'd sure appreciate it?

Thanks!:)

Lynda

Welcome to the club Lynda :)

Coeliacs often have a very low iron count as they cannot absorb it through the normal methods (as your intestine is damaged in celiac disease)

The quickest way to raise that level is through IV - although it doesn't sound like much fun I agree :unsure:

Coeliacs are also prone to Osteoporosis (as they can't absorb Calcium sufficiently) and a bone scan will reveal if your bones look 'thin' anywhere.

Hopefully - once you established on the gluten-free diet - and your bowel starts to heal you should start to be able absorb these nutrients much better and they will eventually right themselves.

Hope this answers your questions :)

LyndaCanada Rookie

Thanks Nikki, I appreciate the information. Honestly, i felt so brushed off at the doctor's office yesterday I was quite angry. He barely looked up from the report he was scribbling up to answer my questions. Like I said, I had NO CLUE my iron was this low, no wonder I felt so horrible!! He didn't explain anything ughh!!

Thanks again, I'm so thankful that I have this board to help me answer my questions that the doctor seemed too "busy" to answer!!

Lynda

flowergirl Rookie

Hi lynda, that sounds extreme. :unsure: My ferritin count was 18 a few months ago. Below borderline. My doctor had it retested recently and it is now 24. She says whatever I'm doing, keep on doing it. She also suggested I continue with the high potency iron supplements I'm taking (it has 270mg dried ferrous sulphate eq to 87mg of elemental iron and 300mcg Folic acid). It is taking long but I have a lot more energy and it's the only supplements I'm taking. I hope you feel better soon.

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.