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

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

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

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

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

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

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

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

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

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

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

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.

  • 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. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

    2. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    3. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Guinness, can you drink it?

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

      Taking Probiotics but Still Getting Sick After Gluten – Advice?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,215
    • Most Online (within 30 mins)
      7,748

    toni tay
    Newest Member
    toni tay
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • 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.