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

Anemia/vitamin Deficiency Without Villi Damage?

mars817

Recommended Posts

mars817 Rookie
mars817
Posted

If an endoscopy showed no damage to the villi could there still be deficiency problems? I'm wondering if I have celiacs because I have most of the symptoms and having very bad anemia and other vitamin deficiencies but my tests came back ok. Trying to figure out if the cause could still be celiacs without having the villi show damage?

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Did you have the blood work for Celiac? Get a copy of the pathology and procedure reports and the blood work (if done). Read it yourself. See how many biposies were taken. It is quite common for a doctor to miss the spots with the damage which is why they should take at least 6 samples of the intestine. See if the doc even read the results. Or even biopsied the correct places.

AandGsmomma Apprentice
AandGsmomma
Posted

I have vitamin deficiancy and anemia but my biospy came back fine. However with my biopsy they only looked at the top part of the intestine and only took a few samples. My blood work also was negative, but Im IGA and IGG deficient.

mars817 Rookie
mars817
Posted
  • Author

My bloodwork was negative. It was my general surgeon, he did a colonoscopy and endoscopy and he only took one sample, so maybe it was incorrect? I don't know if he really knew what he was doing or just took a random sample because I asked about it. He did say everything looked fine to him. I got copy of the results but I need to find them, my husband might have threw them out. grr.

mars817 Rookie
mars817
Posted
  • Author

I have vitamin deficiancy and anemia but my biospy came back fine. However with my biopsy they only looked at the top part of the intestine and only took a few samples. My blood work also was negative, but Im IGA and IGG deficient.

What does that mean to be IGA and IGG deficient? How would I know that? I seem to be deficient on everything else!

rosetapper23 Explorer
rosetapper23
Posted

It's very common for the biopsies to come back negative even though there is villi damage (according to celiac expert Dr. Alessio Fasano) because either the scope wasn't long enough to reach the damage sections, the surgeon did not biopsy the damaged sections, or the pathologist was either incompetent or unskilled in reading the results. If you B12 anemia, you can take sublingual B12, and if you have iron anemia, you can request to receive iron intravenously (if you're unable to absorb it). Some doctors are unaware that intravenous iron is available, but it is. If you're having difficulties absorbing Vitamin D, Country Life sells Natural Vitamin D, which also contains the proper ratio of Vitamin D and medium-chain triglycerides to help you absorb it. You might also consider taking digestive enzymes and L-glutamine to help heal your gut.

mars817 Rookie
mars817
Posted
  • Author

It's very common for the biopsies to come back negative even though there is villi damage (according to celiac expert Dr. Alessio Fasano) because either the scope wasn't long enough to reach the damage sections, the surgeon did not biopsy the damaged sections, or the pathologist was either incompetent or unskilled in reading the results. If you B12 anemia, you can take sublingual B12, and if you have iron anemia, you can request to receive iron intravenously (if you're unable to absorb it). Some doctors are unaware that intravenous iron is available, but it is. If you're having difficulties absorbing Vitamin D, Country Life sells Natural Vitamin D, which also contains the proper ratio of Vitamin D and medium-chain triglycerides to help you absorb it. You might also consider taking digestive enzymes and L-glutamine to help heal your gut.

Thanks! I am getting b12 shots weekly, they have talked iron infusions but I have not been refered to a hematologist yet, waiting on a pill cam study. My surgeon is convienced I have a bleed or something in part of my intestines they couldn't see, but doesn't think celiacs since my blood test was negative.

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

Celiac.com Sponsor (A8-M):


GFinDC Veteran
GFinDC
Posted

Hi Mars the Red planet,

Yes, you can have celiac damage even if a biopsy doesn't show it. The small intestine is around 20 to 22 feet long, and the endoscopy probe can only reach the first 5 feet or so. There's a lot of unexplored territory there.

nvsmom Community Regular
nvsmom
Posted

Most sufferers of autoimmune diseases have deficiencies in vitamins and minerals; D, B12, iron and calcium are commonly low in things like hypothyroidism, Lupus and others.

Conversely, you can have AI diseases and have great blood work. I have celiac, ITP, and hashimotos and I have fantastic blood work, cholesterol, iron and my B12 is above the normal range. I was slightly low in D but still well within normal range so I tripled my D supplements.

Non celiac gluten intolerant people have the same symptoms as celiacs as well as many of the same deficiencies.... As far as I can tell, there is no hard and fast rule when it comes to this area... frustrating as that is.

Best wishes.

AandGsmomma Apprentice
AandGsmomma
Posted

The total IGA and Total IGG were part of my celiac panel. It also included the normal ranges. Since I dont make enough IGA the test results are useless since they are based on an IGA reaction.

  • 4 weeks later...
Megan1980 Newbie
Megan1980
Posted

Most sufferers of autoimmune diseases have deficiencies in vitamins and minerals; D, B12, iron and calcium are commonly low in things like hypothyroidism, Lupus and others.

Conversely, you can have AI diseases and have great blood work. I have celiac, ITP, and hashimotos and I have fantastic blood work, cholesterol, iron and my B12 is above the normal range. I was slightly low in D but still well within normal range so I tripled my D supplements.

Non celiac gluten intolerant people have the same symptoms as celiacs as well as many of the same deficiencies.... As far as I can tell, there is no hard and fast rule when it comes to this area... frustrating as that is.

Best wishes.

Do you have a source for the information that non-celiac gluten intolerance can cause deficiencies, because I've been looking for that info everywhere and haven't been able to find it.

I have symptoms that fit with Hashimoto's and celiac but my celiac panel came back negative as did my thyroid antibodies. The only thing my blood shows is low vitamin d (though I've been taking it for years) and low ferritin. Also I had a low BUN score which when I looked up it said it was either from a low protein diet or malabsorption. I do not have a low protein diet.

I'd love to get some answers! At this point I've been told I have somatization, but I know that's not the case.

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. knitty kitty
      - 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.

      @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...
    2. Jane02
      - 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.

      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...
    3. knitty kitty
      - 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.

      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...
    4. Scott Adams
      0

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

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams 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.

      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.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      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! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      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. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.