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 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. trents
      - trents replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well: Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative...
    2. Scott Adams
      - Scott Adams replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t sh...
    3. KDeL
      - KDeL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac...
    4. Peggy M
      - Peggy M replied to louissthephin's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Does Kroger Offer Affordable Gluten-Free Options?

      Kroeger has quite a few Gluten free items. Right now they are redoing my Kroeger store and are adding everything into the regular sections. Since this was done some new ones have been added. Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    5. Scott Adams
      - Scott Adams replied to Sunshine4's topic in Related Issues & Disorders
      4

      Neurologic symptoms - Muscle Twitching and Hand Tremors

      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,277
    • Most Online (within 30 mins)
      7,748
    Cooper1234
    Newest Member
    Cooper1234
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      diagnostic testing variance

      By trents · Posted

      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well:  Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test People who are IGA deficient should have IGG tests run as well. Check this out:    I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.
    • Scott Adams
      diagnostic testing variance

      By Scott Adams · Posted

      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      diagnostic testing variance

      By KDeL · Posted

      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Does Kroger Offer Affordable Gluten-Free Options?

      By Peggy M · Posted

      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Neurologic symptoms - Muscle Twitching and Hand Tremors

      By Scott Adams · Posted

      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
×
×
  • Create New...