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

Flat Mucosa And Celiac Disease?

JaniceS

Recommended Posts

JaniceS Newbie
JaniceS
Posted

I recently had an EGD and Colonoscopy done and in the report I recieved it says that flat mucosa was found in the bulb and the duodenum and that biopsies were taken to test for Celiac Disease... however I already had bloodwork done to test for Celiac Disease and everything came back normal. I have a follow-up appointment for two weeks from now, July 1st, but the wait is really getting to me. I was told NOT to go gluten free because it can effect the results of a Celiac test, however if cutting gluten out of my diet might make me feel better I am willing to risk it. From reading things online it seems that flat mucosa is almost ALWAYS celiac, but I cannot find anything else that causes it... only things that say stuff like "flat mucosa is almost always a sign of celiac disease" but it never says what other things it could be a sign of. Please someone, help. I am stressing and I don't know which way to turn! Is it possible to have a negative blood test for celiac but still have celiac? Thank you.

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

Celiac.com Sponsor (A8-M):


Harpgirl Explorer
Harpgirl
Posted

It is possible to have a false negative. The book I've been reading even says that it can be attributed to lab techs who, if they see the celiac testing at all, rarely get requests for it, and tend to perform the test incorrectly. There are a number of reasons to get a false negative, but that one really stood out to me. :blink:

ravenwoodglass Mentor
ravenwoodglass
Posted

Unfortunately both blood and biopsies can come back with a pretty high rate of false negatives. Since you have had both bloodwork and biopsies for celiac call your doctor and ask what other testing they are planning on doing for celiac. If they say they are just waiting for the results and are not doing any further testing you could go ahead and start the diet. Being on the diet will not effect testing for other problems. If they say they plan on doing gene tests be aware that not all celiacs have the 2 most common genes and that you don't have to be still eating gluten for the gene tests.

No matter what the test results of the biopsy do give the diet a good strict trial when you are done with celiac testing.

JaniceS Newbie
JaniceS
Posted
  • Author

Would you mind telling me which book you're reading? I would like to educate myself on this issue as well.

I think I have to agree with you on the lab-tech being the problem, since (assuming that is) I am sure that it is more likely to have human error than other things. I guess I can't really say I am relieved to hear that you can get false negatives, but it would make sense.

Sorry, I didn't see the other post when I replied. Thank you for the information about the glute-free diet. When my doctor's office opens I will be sure to call, however speaking with my GI is almost impossible, and in the past when I've left a call back message I've never receieved one. I've been researching some gluten-free recipies and am planning on heading to a Barnes and Noble today to see about looking at a few gluten-free cook books. If it turns out to be Celiac, I would like to be a little more prepared.

Harpgirl Explorer
Harpgirl
Posted

Would you mind telling me which book you're reading? I would like to educate myself on this issue as well.

I'm reading Living Gluten-Free For Dummies by Danna Korn. What's really nice is I've got it digitally on my ereader, so I can highlight and make notes. Then when I go to the store, I can take it with me and look up the highlights so I know which ingredients to look for. There are a lot that I never would have thought of! :o

JaniceS Newbie
JaniceS
Posted
  • Author

I'm reading Living Gluten-Free For Dummies by Danna Korn. What's really nice is I've got it digitally on my ereader, so I can highlight and make notes. Then when I go to the store, I can take it with me and look up the highlights so I know which ingredients to look for. There are a lot that I never would have thought of! :o

Ohh great! I have an e-reader as well, didn't even think of looking for gluten free books on it. That is a great idea, thanks. Really it probably makes shopping a lot easier too - so you know exactly what to buy for what you plan on making. Absolutely brilliant! Thanks!

Harpgirl Explorer
Harpgirl
Posted

Ohh great! I have an e-reader as well, didn't even think of looking for gluten free books on it. That is a great idea, thanks. Really it probably makes shopping a lot easier too - so you know exactly what to buy for what you plan on making. Absolutely brilliant! Thanks!

No problem ;) I'm also told that Dangerous Grains is a good one too. It's also available digitally.

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

Celiac.com Sponsor (A8-M):


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. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

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

      celiac.com support

      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!
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      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
      8

      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
      133,327
    • 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

    • 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! 
    • MichaelDG
      celiac.com support

      By MichaelDG · Posted

      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
      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.