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

Could the test results be wrong?

Mikeymike93
 Share

Recommended Posts

Mikeymike93 Explorer
Mikeymike93
Posted

Hello. Has anybody had experience with questioning blood test results or diagnosis for celiac. And maybe how you knew for sure by symptoms it was 100%? Maybe tried gluten and didnt find any symptoms and then realized later it caused trouble?

 Asking because I was diagnosed through auto immune blood test results but my upper scope procedure showed inconclusive results. I went gluten free for 1 year with no cheating and considered myself celiac but many GI symptoms never went away. Now wondering if I try eating gluten and dont find I react badly, what that could mean. Is there any chance those blood test results were not celiac specific and something else? At this same time I want to know if there are people that can eat gluten without initial symptoms.

I also have gastritis and gallstones for sure which is why celiac is just another GI related thing on top of what I know I have. 

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Is there any chance you can share your test results? In general the blood tests they give now are ~98% accurate.

Mikeymike93 Explorer
Mikeymike93
Posted
  • Author

So the positive results were dedicated Gliadin slightly high transglutamine IGG really high (>160) normal i think is 15-25. and IGA (28) normal is 15-25. Then said confirm with endoscopy. Which came back inconclusive with villi ok. 

cyclinglady Grand Master
cyclinglady
Posted

Can you get repeat testing? (This should be offered up annually per the celiac research centers as a standard for follow-up care.).  If your tests results are lower, then it helps to confirm your celiac disease diagnosis.  You would be healing.  

Gallstones and gastritis can still act up even if you have healed from celiac disease.  

  • 1 month later...
Chrismark Apprentice
Chrismark
Posted
On 4/30/2020 at 7:45 AM, Mikeymike93 said:

Hello. Has anybody had experience with questioning blood test results or diagnosis for celiac. And maybe how you knew for sure by symptoms it was 100%? Maybe tried gluten and didnt find any symptoms and then realized later it caused trouble?

 Asking because I was diagnosed through auto immune blood test results but my upper scope procedure showed inconclusive results. I went gluten free for 1 year with no cheating and considered myself celiac but many GI symptoms never went away. Now wondering if I try eating gluten and dont find I react badly, what that could mean. Is there any chance those blood test results were not celiac specific and something else? At this same time I want to know if there are people that can eat gluten without initial symptoms.

I also have gastritis and gallstones for sure which is why celiac is just another GI related thing on top of what I know I have. 

I have gone gluten free for several years, and many of the symptoms are still with me, and never went away. I found that the gluten never totally left my body. Doctors told me that they had no answer. The reason that I know the gluten is still in me is that it is still. very slowly, leaving me.

Chrismark Apprentice
Chrismark
Posted
On 5/1/2020 at 5:29 PM, cyclinglady said:

Can you get repeat testing? (This should be offered up annually per the celiac research centers as a standard for follow-up care.).  If your tests results are lower, then it helps to confirm your celiac disease diagnosis.  You would be healing.  

Gallstones and gastritis can still act up even if you have healed from celiac disease.  

I was tested twice for Celiac and told that the test results indicated that I did not have Celiac Disease.  However, I did have all the symptoms. Spoke to a specialist, and he said that I should write down all of my symptoms, and give this list to another person, so I cannot see it. I was then told to go 100% Gluten Free for one month, and then write a list of my symptoms.  I compared the original list with the new list, and it was obvious that even though the blood test indicated that I did not suffer from Celiac Disease, the test was wrong.  The symptoms had improved dramatically without any gluten in me.

GFinDC Veteran
GFinDC
Posted
3 hours ago, Chrismark said:

I have gone gluten free for several years, and many of the symptoms are still with me, and never went away. I found that the gluten never totally left my body. Doctors told me that they had no answer. The reason that I know the gluten is still in me is that it is still. very slowly, leaving me.

Hi Chrismark,

Gluten doesn't stay in the body for long.  It comes out in the stool at some point.  I think what you mean is that you are still having an immune reaction or GI symptoms?  The immune systems reactions can go on for weeks to months depending on the person.  All it takes is a tiny amount of gluten to keep the immune system revved up and attacking.  So a tiny gluten exposure every 3 weeks can keep symptoms going forever.

The other thing that can happen to people is they may develop reactions/intolerances to other foods besides gluten.  Any food can become irritating if the gut becomes sensitized to it.  Dairy and oats are 2 foods that often cause symptoms, but soy, eggs, corn, zanthan gum, nightshades, fish etc can all be problems as well as any other food.

Finding these other food intolerances can take time and an elimination diet.

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

Celiac.com Sponsor (A8-M):


Mikeymike93 Explorer
Mikeymike93
Posted
  • Author

Have you heard of celiac disease where you actually can eat a bit of gluten without having symptoms? 

cyclinglady Grand Master
cyclinglady
Posted
4 hours ago, Mikeymike93 said:

Have you heard of celiac disease where you actually can eat a bit of gluten without having symptoms? 

Sure.  Some celiacs are asymptomatic but that does not mean that their small intestines are not being damaged.  

GFinDC Veteran
GFinDC
Posted
(edited)
13 hours ago, cyclinglady said:

Sure.  Some celiacs are asymptomatic but that does not mean that their small intestines are not being damaged.  

Right, symptoms and damage are two different things.

@mikeymike, Silent celiac is when a person has no symptoms but still has celiac disease.  That situation could last for years until the person develops nutrient deficiencies that cause illness, or joint or skin symptoms, or brain damage (ataxia), or just plain dies.

There was an article a while back saying that many celiacs are exposed to trace amounts of gluten in foods frequently.  Turns out the world isn't perfect.  There are pills you can take with enzymes to help digest trace amounts of gluten.  The better option is to avoid anything but whole foods or certified gluten-free foods until your symptoms go away.

Edited by GFinDC

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
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 Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      16

      Gluten Issues and Vitamin D

      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine. Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes. HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc. Thiamine deficiency inside a cell triggers a...
    2. knitty kitty
      - knitty kitty replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Airborne Gluten?

      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten! Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten. I can get glutened from the bakery section at the grocery store. The nose and mouth drain into the digestive system and can trigger systemic reactions. I find the histamine release...
    3. Scott Adams
      - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Guinness, can you drink it?

      This article may be helpful:
    4. Kirita
      - Kirita posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Recovery from gluten challenge

      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, ...
    5. annamarie6655
      - annamarie6655 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Airborne Gluten?

      Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum. Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,241
    • Most Online (within 30 mins)
      7,748
    Martha Kaczmarek
    Newest Member
    Martha Kaczmarek
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Gluten Issues and Vitamin D

      By knitty kitty · Posted

      Hello, @MogwaiStripe, Vitamin D is turned into its activated forms by Thiamine.  Thiamine deficiency can affect Vitamin D activation. https://pubmed.ncbi.nlm.nih.gov/14913223/ Thiamine deficiency affects HLA genes.  HLA genes code for autoimmune diseases like Celiac, Thyroiditis, Diabetes, etc.  Thiamine deficiency inside a cell triggers a toggle switch on the gene which in turn activates autoimmune diseases carried on the gene.  The reference to the study is in my blog somewhere.  Click on my name to go to my page, scroll down to the drop down menu "Activities" and click on blogs.  
    • knitty kitty
      Airborne Gluten?

      By knitty kitty · Posted

      Hello, @annamarie6655, Yes, there's many of us who react to airborne gluten!   Yes, animal feed, whether for chickens or cats or dogs, can release airborne gluten.  I can get glutened from the bakery section at the grocery store.   The nose and mouth drain into the digestive system and can trigger systemic reactions.   I find the histamine release in response to airborne gluten will stuff up my sinuses and bother my eyes.  High histamine levels do cause anxiety and migraines.  The muscle spasms can be caused by high histamine, too.  The digestive system may not manifest symptoms without a higher level of gluten exposure.   Our bodies make an enzyme, DAO (diamine oxidase), to break down histamine.   Pyridoxine B 6, Cobalamine B12, Vitamin C, copper, zinc, and iron are needed to make DAO.  DAO supplements are available over the counter.  Taking a B Complex supplement and additional Thiamine in the form Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) helps reduce the amount of histamine being released.  Mast cells without sufficient Thiamine have an itchy trigger finger and release histamine at the slightest provocation.  Thiamine helps mast cells refrain from releasing their histamine.    I find taking additional TTFD thiamine helps immensely with neurological symptoms as TTFD can easily cross the blood brain barrier without a carrier.  High histamine in the brain can cause the muscle spasms, anxiety and migraines.  Vitamin C really helps with clearing histamine, too.   The Digiorno pizza mystery reaction could have been caused by a reaction to the cheese.  Some people develop lactose intolerance.  Others react to Casein, the protein in dairy, the same as if to gluten because Casein resembles the molecular structure of gluten.  An enzyme used in some dairy products, microbial transglutaminase, causes a gluten reaction because it is the same as the tissue transglutaminase our bodies make except microbes make it.  Those tTg IgA blood tests to diagnose celiac disease measure tissue transglutaminase our bodies release as part of the autoimmune response to gluten.   You're doing great!  A Sherlock Holmes award to you for figuring out the connection between airborne gluten and animal feed!!!  
    • Scott Adams
      Guinness, can you drink it?

      By Scott Adams · Posted

      This article may be helpful:  
    • Kirita
      Recovery from gluten challenge

      By Kirita · Posted

      I’m wondering if anyone has had any experience with the gluten challenge. My teenager completed a gluten challenge over the summer, it ended up being 10 weeks although she stopped being consistent eating gluten after 6. Her previous endoscopy was negative but this past August it was positive after the gluten challenge. If you have done the gluten challenge, how long did it take you to feel back to normal? It took about two months before she got “glutened” again but now she’s having difficult coming back from that and has a lot of fatigue. I’m hoping someone has some advice! 
    • annamarie6655
      Airborne Gluten?

      By annamarie6655 · Posted

      Hello everyone, I was on here a few months ago trying to figure out if I was reacting to something other than gluten, to which a very helpful response was that it could be xanthin or guar gum.    Since then, I have eaten items with both of those ingredients in it and I have not reacted to it, so my mystery reaction to the Digiorno pizza remains.    HOWEVER, I realized something recently- the last time I got glutened and the most recent time I got glutened, I truly never ate anything with gluten in it. But i did breathe it in.    The first time was a feed barrel for my uncle’s chickens- all of the dust came right up, and most of what was in there was wheat/grains. The second time was after opening a pet food bag and accidentally getting a huge whiff of it.    When this happens, I tend to have more neurological symptoms- specifically involuntary muscle spasms/jerks everywhere. It also seems to cause migraines and anxiety as well. Sometimes, with more airborne exposure, I get GI symptoms, but not every time.    My doctor says he’s never heard of it being an airborne problem, but also said he isn’t well versed in celiac specifics. I don’t have the money for a personal dietician, so I’m doing the best I can.    is there anyone else who has experienced this, or gets similar neurological symptoms? 
×
×
  • 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.