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. TheDHhurts
      - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Prana Organics no longer GFCO-certified

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what...
    2. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    3. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    4. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    5. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,925
    • Most Online (within 30 mins)
      7,748
    Jimlock
    Newest Member
    Jimlock
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • TheDHhurts
      Prana Organics no longer GFCO-certified

      By TheDHhurts · Posted

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
×
×
  • 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.