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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from...
    2. Scott Adams
      0

      Gluten-Free Peanut Butter Cup Swirl Brownies

    3. Mari
      - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      3

      Related issues

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate...
    4. MogwaiStripe
      - MogwaiStripe replied to annamarie6655's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Airborne Gluten?

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks...
    5. 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...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,257
    • Most Online (within 30 mins)
      7,748
    Gabs
    Newest Member
    Gabs
    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

    • Jmartes71
      Related issues

      By Jmartes71 · Posted

      I had the test done by one of the specialist through second pcp I had only a few months because he was saying I wasn't.Even though Im positive HLA-DQ2 .My celiac is down played.I am with new pcp, seeing another girl doctor who wants to do another breathe test next month though Im positive sibo this year.I have high blood pressure not sure if its pain from sciatica or sibo, ibs or hidden gluten. Im in disability limbo and I should have never been a bus driver because im still suffering and trying to heal with zero income except for my husband. This isnt fare that my health is dictating my living and having ti beg for being revalidation of my disregarded celiac disease. Its an emotional roller coaster I don't want to be on and the medical made it worse.New pcp new gi, exhausted, tired and really fed up. GI doctor NOT girl..
    • Mari
      Related issues

      By Mari · Posted

      Hi Jmartes, It sure is difficult to get useful advice from medical providers. Almost 20 years  ago a Dr suggested that I might have Celiacs and I took a Celiac Panel blood test. No gluten challenge diet. On that test the tTG was in normal range but an alpha antibody was very high. I went online and read about celiac disease and saw how I could investigate this low tTG and still have celiac disease. Normal tTG can happen when a person had been reacting for many years. Another way is that the person has not been eating enough gluten to raise the antibody level. Another reason is that the tTG does not show up on a blood but may show up on a fecal test. Almost all Celiacs inherit at least one of the 2 main Celiac genes. I had genetic tests for the Celiac genes at Enterolab.com. I inherited one main Celiac gene from one parent and the report said that the DQ gene I inherited from my other parent, DQ6, could cause a person to have more problems or symptoms with that combination. One of my grandmother's had fairly typical symptoms of Celiacs but the other grandmother had severe food intolerances. I seem to show some problems inherited from both grandmothers. Human physiology is very complex and researchers are just beginning to understand how different body systems interact.  If you have taken an autosomal DNA test you can download your raw data file and upload it to Prometheuw.com for a small fee and search for Celiac Disease. If you don't find any Cekiac genes or information about Celiac disease  you may not have autoimmune gluten intolerance because more than 99% of Celiacs have one or both of these genes.  PLEASE ASK QUESTIONS IF YOU WANT TO KNOW EHAT i HAVE DONE TO HELP WITH SYMPTOMS.  
    • MogwaiStripe
      Airborne Gluten?

      By MogwaiStripe · Posted

      I can't prove it, but I truly believe I have been glutened by airborne particles. I used to take care of shelter cats once per week at a pet store, and no matter how careful I was, I would get glutened each time even if I wore a mask and gloves and washed up well after I was done. I believe the problem was that because I'm short, I couldn't do the the tasks without getting my head and shoulders inside their cages, and so the particles from their food would be all over my hair and top of my shirt. Then I had to drive home, so even if I didn't get glutened right then, the particles would be in my car just waiting for me to get in the car so they could get blown into my face again. I gave up that volunteer gig and stopped getting glutened so often and at such regular intervals.
    • 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!!!  
×
×
  • 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.