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. Rejoicephd
      - Rejoicephd commented on Scott Adams's article in Origins of Celiac Disease
      8

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      I had actually forgot about the stretch of time that I was on antibiotics for acne. The more I think back on it, I was on antibiotics for a very good chunk of my childhood and into teenage years for a range of issues.
    2. knitty kitty
      - knitty kitty replied to Known1's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

      I've heard RO water is bad, too. Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too. I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.
    3. Yaya
      - Yaya replied to Yaya's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Great Value Veggies cannot be trusted.

      Scott. Thank you for your reply. I'm still having symptoms, but significantly better. I will go back to batch cooking and freezing vegetables. I have had success with Pict Sweet frozen, single item (not mixed) vegetables. My Kroger carries very little Pict Sweet variety. Regards, Yaya
    4. Known1
      - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Reverse Osmosis (RO) Water

      I am hesitant to post this as I have seen many people here recommending RO water. With that said, I want to share my experience and how RO water now impacts me. Three or four years ago a local store installed a RO water refill station. I had been buying gallons of distilled and spring water prior to that. I switched over to using the RO water refill station...
    5. Known1
      - Known1 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      My neighbor's mom was diagnosed with celiac disease 16 years ago. She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals. This evening she brought over 2 slices of Papa Murphy's gluten-free pizza. It looks to be topped with chicken and spinach. I asked, "aren't you concerned with cross contamination...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,445
    • Most Online (within 30 mins)
      7,748
    JamesM
    Newest Member
    JamesM
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • knitty kitty
      Reverse Osmosis (RO) Water

      By knitty kitty · Posted

      I've heard RO water is bad, too.   Distilled water has all the minerals distilled out of it, so it will pull minerals out of your bones, too.  I only use distilled water to fill up my clothes iron so it won't get mineral deposits inside and quit working. I drink mineral or spring water.  
    • Yaya
      Great Value Veggies cannot be trusted.

      By Yaya · Posted

      Scott.  Thank you for your reply. I'm still having symptoms, but significantly better.  I will go back to batch cooking and freezing vegetables.  I have had success with Pict Sweet frozen, single item (not mixed) vegetables.  My Kroger carries very little Pict Sweet variety. Regards, Yaya
    • Known1
      Reverse Osmosis (RO) Water

      By Known1 · Posted

      I am hesitant to post this as I have seen many people here recommending RO water.  With that said, I want to share my experience and how RO water now impacts me.  Three or four years ago a local store installed a RO water refill station.  I had been buying gallons of distilled and spring water prior to that.  I switched over to using the RO water refill station saving money by brining in my own clean empty gallon jugs.  Every 6-months I would replace the jugs by buying new gallons of distilled water.  This RO water is the only water I would drink while at home.  Two huge glasses every morning before work and two more after work.  I would also use the RO water to make coffee and hot coco. This past December, prior to my celiac diagnosis, my gut was making more noise than anything I had ever experienced.  Seriously, it was crazy, almost like fire works going off in my stomach.  I happened to pick up some distilled water for my 6-month jug rotation.  Literally, as soon as I started drinking the distilled water my stomach settled a great deal.  I could honestly feel the difference after the first glass of water.  I thought that maybe the RO water from the store's refill station was contaminated with some sort of cleaning agent.  I swore to myself I would never drink from that RO refill station again.  Instead I went back to buying distilled along with gallon jugs of spring water.  No issues with either of those as far as an upset stomach is concerned.  Cost, well that's a different story all together. After being diagnosed marsh 3c, I went shopping at Aldi's for the first time in my life.  I noticed they also sell water by the gallon.  Over the course of the last few weeks, I have purchased a total of 6-gallons of their water.  (Thankfully they were out on two of my visits.)  After having my stomach starting to make noises similar to mid-December again, it dawned on me, maybe its the Aldi water?  Initially I had contributed my bubble gut to some sort of gluten exposure or cross contamination.  Even though everything I have put into my stomach is naturally gluten-free or has been labeled gluten-free / certified gluten-free.  I had assumed that the Aldi water was spring water.  Come to find out, that was a bad assumption.  Looking close at the label it says purified by RO or distillation (or something like that). Again, I switched to different water.  Just like last December, the non-RO water instantly calmed my stomach and even felt better going down the hatch.  This was earlier today by the way.  Prior to creating this post, I did a few searches via Uncle Google.  I bumped into a thread on Reddit (where I am not a member) that has multiple people complaining of GI issues related to RO water.  So my initial thoughts on a cleaning agent in the refill station RO water were likely not correct.  Unfortunately, it seems the RO water itself causing me problems.  I am not sure if we are allowed to post links to other sites and hopefully I will not get into trouble for doing so.  I did try printing the Reddit thread to a PDF file.  Unfortunately, the file is 2MB in size, which is well over the 500KB file attachment limit here on this amazing forum.  Again, hopefully this is ok.  🤞  Here is the Reddit thread. This may not be a popular opinion here, but personally, I will not willingly drink another glass of RO water for the remainder of my life.  Who knows, maybe drinking RO water for the past several years is part of what activated my celiac?  No proof, but just a thought.  Come to find out RO water is well known to leech minerals from your body.  With people like us often lacking minerals to begin with, RO water does not seem like a wise choice.  As the Reddit thread mentions, there are RO water filtration systems that will inject minerals back into the water.  However, those systems are likely not being used at the grocery store refill stations nor by the bottling companies producing RO water for sale at your local store. Please do not shoot the messenger as I am just sharing my personal experience and letting others know that most RO water will leech minerals from your body. God bless and stay well, Known1
    • Known1
      What would you do - neighbor brought gluten-free pizza from Papa Murphy's

      By Known1 · Posted

      My neighbor's mom was diagnosed with celiac disease 16 years ago.  She is a very kind person and has shared some info about local grocery stores and daily (soon to expire) meat deals.  This evening she brought over 2 slices of Papa Murphy's gluten-free pizza.  It looks to be topped with chicken and spinach.  I asked, "aren't you concerned with cross contamination"?  She said no and apparently eats it on a somewhat regular basis. I found an old article here along with another thread pertaining to Papa Murphy's gluten-free pizza.  The article is quite old, so I do not think it holds much weight nowadays.  The thread I found was also a bit dated, but certainly more recent and relevant.  The information in the thread I found was a bit inconclusive.  Some said they trust Papa Murphy's gluten-free pizza and others were a big no way.  One person even took time to train their local franchise on how to ensure the pizza remains gluten-free without cross contamination. Anyway, being recently diagnosed as marsh 3c, I am currently working on week 3 or 4 in my new gluten-free journey.  I do not want to be rude and toss the pizza out, but I also do not want to have a reaction.  Since she has celiac and obviously ate much or at least some of the pizza, I am leaning towards eating the two slices for lunch tomorrow.  As this thread's title states, what would you do?  Would you eat it or toss it out?  I suppose I could also just give it back to my neighbor to polish off. I look forward to reading your thoughts. Thanks, Known1
    • Scott Adams
      Great Value Veggies cannot be trusted.

      By Scott Adams · Posted

      That must have been really upsetting to discover, especially after relying on a product you believed was safe. Labeling can change at any time due to supplier shifts or shared equipment, so it’s always important to double-check packaging—even on products we’ve trusted for years. A “may contain wheat” statement usually indicates potential cross-contact risk rather than an added ingredient, but for people with celiac disease that risk can still be significant. If you’ve been having symptoms, it may take days to weeks to fully settle, depending on the level and duration of exposure. In the meantime, switching to fresh produce or brands that clearly state gluten-free status is a reasonable step. It may also help to contact the manufacturer directly to ask when the labeling changed and what their current cross-contact controls are.
×
×
  • 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.