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

Am I Celiac? Negative Blood Test and Biopsy

CourtneyH

Recommended Posts

CourtneyH Newbie
CourtneyH
Posted

Okay so here is the story.

Ever since I have been about nine years old I have had intense stomach cramping, bloating, gas, diarrhea, constipation and overall abdominal pain to the point where my parents thought I was having appendicitis. I was then told that I had IBS. I am currently 21 and over the past 5 years or so I have also developed numbness in the hands, migraines, pale skin, exhaustion, acid reflux, heartburn, dizziness, B12 deficiency, constant canker sores, random fevers, chills, and random rashes on my face, chest, stomach, and back.  

My doctor had given a blood test before to test for celiac disease (was not told to eat gluten or anything before hand which I have heard is recommended), which came back negative and continued to insist I just had IBS. I then decided enough was enough and demanded a referral to a gastrologist. It took about 6 months to get the appt. and her first question for me upon reviewing my symptoms was whether or not I had been tested for celiac disease which I, of course, told her I had and it was negative. She gave me a colonoscopy and endoscopy to check for any damage and as she said, "to see what's going on in there". All I got back was a form saying routine biopsies were taken and no abnormalities were found, she gave me a prescription for Ranitidine for the acid reflux (which made it much worse) and said it is likely IBS. 

At this point, I decided I needed help managing my lifestyle because I was in pain every day despite avoiding foods high in fats, oils, sugars, salts, and preservatives nothing was helping. I went to a Naturopath who upon reviewing my symptoms she was confident it was Celiac, though she could not offer an official diagnosis being a Naturopath. I have been off gluten for over a month now and mostly all my symptoms have resided except the acid reflux. I accidently ate gluten about a week ago which resulted in severe abdominal pain, constipation, a rash on my face, neck, chest, stomach, and back and fevers on and off for four days. 

I am wondering if it is possible that I do in fact have celiac disease despite the negative blood test and biopsy? I would like to be taken seriously and not seen as someone else following the gluten-free trend but is it worth seeking out an official diagnosis?

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

Celiac.com Sponsor (A8-M):


TexasJen Collaborator
TexasJen
Posted

Sure, it's definitely possible....Now to prove it.  Is there anyway that you can get copies of the labs and the pathology report that the doctors did?  Maybe they did everything correctly.... Here's a link to interpreting the blood tests. If the doc only ordered one or two of the panel of tests, you could have a false negative...

https://www.celiac.com/articles/57/1/Interpretation-of-Celiac-Disease-Blood-Test-Results/Page1.html

If they did everything correctly, and it was negative, you might still consider getting the blood work again - while you are still eating gluten. The tests could be a false negative if you were gluten free at the time.

 

People post their results here all the time for the community to look at and comment upon.:)

If that all is negative, you could still have non-celiac gluten sensitivity.....

Best of luck!

 

 

Cat59 Newbie
Cat59
Posted

Hi, my doctor explained to me that Celiac Disease is only a small part of gluten sensitivity.  She said that you have have a really strong reaction to gluten and it can cause way more problems then just intestinal damage.  Right now I am currently  going through all the testing myself.  They found high levels of the Anti-gliadin IgA in a stool test and also high results in the secretory IgA.  My doctors says that Celiac will show up in the stool before it shows up in the blood or the damage in the intestines.  Especially if you are in the beginning stages of the disease.  The problem with most GI Doctors they only look at Celiac disease and not a really strong intolerance.  They also do not usually order the stool tests to see what is causing the inflammation.  I highly recommend that you go to a Naturopathic Doctor and ask for a stool test.  Mine was done by Diagnostic Solutions.  Then I had a food intolerances test done by US BioTek which also showed a reaction to wheat gliadin and wheat gluten. So at this point I am waiting for the biopsy results on my Upper GI I just had today.  The report so far says that the duodenum looked normal but that they  biopsied it anyway.  My stool tests also revealed that I had too low levels of the good flora and three bad bacterias.  So you definitely want to get that test done to rule out bad bacteria.  Keep us posted.

Thanks, Cat59

kareng Grand Master
kareng
Posted
18 minutes ago, Cat59 said:

Hi, my doctor explained to me that Celiac Disease is only a small part of gluten sensitivity.  She said that you have have a really strong reaction to gluten and it can cause way more problems then just intestinal damage.  Right now I am currently  going through all the testing myself.  They found high levels of the Anti-gliadin IgA in a stool test and also high results in the secretory IgA.  My doctors says that Celiac will show up in the stool before it shows up in the blood or the damage in the intestines.  Especially if you are in the beginning stages of the disease.  The problem with most GI Doctors they only look at Celiac disease and not a really strong intolerance.  They also do not usually order the stool tests to see what is causing the inflammation.  I highly recommend that you go to a Naturopathic Doctor and ask for a stool test.  Mine was done by Diagnostic Solutions.  Then I had a food intolerances test done by US BioTek which also showed a reaction to wheat gliadin and wheat gluten. So at this point I am waiting for the biopsy results on my Upper GI I just had today.  The report so far says that the duodenum looked normal but that they  biopsied it anyway.  My stool tests also revealed that I had too low levels of the good flora and three bad bacterias.  So you definitely want to get that test done to rule out bad bacteria.  Keep us posted.

Thanks, Cat59

Stool tests are not considered a valid way to diagnoses Celiac disease at this time.

...Harvard, UCSD, and the American College of Gastroenterology all agree that stool tests are simply not sensitive or specific enough methods in screening for celiac disease. We can say therefore with confidence that the test currently being used by these labs is not good enough.  ...

Open Original Shared Link

 

"There are no tests to diagnose non-celiac gluten sensitivity at this time. Which means, no research has been through a scientific, evidence-based, peer-reviewed study that proves what some labs claim as a way to detect non-celiac gluten sensitivity. "

Open Original Shared Link

Cat59 Newbie
Cat59
Posted

Well at this time I also tested positive to a gluten and gliadin IgA and IgG blood test.  My GI doctor took the stool test serious enough to order the biopsy. My stool test was done by Diagnostic Solutions, ordered by my Naturopathic Doctor. Since the disease effects the intestines it makes since that the antibodies would appear there first.  That is where the reaction is. In addition to the inability to test for gluten sensitivity, that fact is that there are blood tests that test for all kinds of food intolerences. US Biotek does blood tests for IgA and IgG reactions using the ELISA methodology.

emma6 Enthusiast
emma6
Posted
12 hours ago, Cat59 said:

Well at this time I also tested positive to a gluten and gliadin IgA and IgG blood test.  My GI doctor took the stool test serious enough to order the biopsy. My stool test was done by Diagnostic Solutions, ordered by my Naturopathic Doctor. Since the disease effects the intestines it makes since that the antibodies would appear there first.  That is where the reaction is. In addition to the inability to test for gluten sensitivity, that fact is that there are blood tests that test for all kinds of food intolerences. US Biotek does blood tests for IgA and IgG reactions using the ELISA methodology.

there are tests available for food intolerance testing but they are not scientifically reliable, which is why doctors do not use them. there are a whole range of tests you can order which are used by alternative practitioners but unfortunately most of them have no medical value and are essentially scamming you. if your gluten and gliadin IGA/IGG were part of the food intolerance test results I wouldn't trust the accuracy, they are not the same as the celiac panel blood tests. it doesn't mean you don't have celiac, gluten intolerance or food intolerances, just that those tests can not tell you.

Open Original Shared Link

Open Original Shared Link

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
      133,327
    • 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
      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.