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

Realized I might not be able to eat gluten for the blood test

confusedandsick
 Share
Go to solution Solved by McNish,

Recommended Posts

confusedandsick Rookie
confusedandsick
Posted

Hi, I recently posted here talking about my journey suffering from (probable) celiac disease/gluten intolerance. So, I got the referral for a blood test.
I can’t do it. I tried to eat gluten for around two weeks. I could barely even eat the recommended daily amount for the test. I’m losing weight, I’m having cognitive impairments, and I feel dangerously ill. I work with heavy, sharp machinery and any sort of cognitive impairment could get me seriously injured. 
Should I try genetic testing? Would it even matter at this point? I clearly have some sort of intolerance to gluten, and many doctors have agreed it sounds exactly like classical celiac. So, why go through this? Should I just accept that I probably have celiac disease and cut out gluten myself?

I don’t understand this. This is like if you made someone with a peanut allergy eat peanuts to test them for an allergy. I can hardly function and I can physically feel the inflammation and churning feeling in my intestines. 
So, has anyone else went this route? I just don’t think the blood test is possible for me anytime soon. Should I go gluten free and wait a few years or so of recovery and then get tested? Go with genetic testing and see what happens? I don’t really know anymore. 

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

Celiac.com Sponsor (A8-M):


KHL Rookie
KHL
Posted

I would get the blood test done anyways. I was basically gluten free for 1.5 years before my blood test and it was still a weak positive. I also had a positive genetic test (23andme). I never bothered with the endoscopy. 

knitty kitty Grand Master
knitty kitty
Posted

@confusedandsick

I couldn't finish a gluten challenge.  I had genetic testing done.  

The Hippocratic oath says "first, do no harm..."  Maybe one day a better way of testing will be found.  Let's hope it's soon.

Some doctors will diagnose Celiac Disease with a genetic test and health improvements on a gluten free diet.

Best wishes! 

  • Solution
McNish Apprentice
McNish
Posted
  • Solution
On 7/9/2023 at 7:19 PM, KHL said:

I would get the blood test done anyways. I was basically gluten free for 1.5 years before my blood test and it was still a weak positive. I also had a positive genetic test (23andme). I never bothered with the endoscopy. 

 

On 7/9/2023 at 9:11 AM, confusedandsick said:

Hi, I recently posted here talking about my journey suffering from (probable) celiac disease/gluten intolerance. So, I got the referral for a blood test.
I can’t do it. I tried to eat gluten for around two weeks. I could barely even eat the recommended daily amount for the test. I’m losing weight, I’m having cognitive impairments, and I feel dangerously ill. I work with heavy, sharp machinery and any sort of cognitive impairment could get me seriously injured. 
Should I try genetic testing? Would it even matter at this point? I clearly have some sort of intolerance to gluten, and many doctors have agreed it sounds exactly like classical celiac. So, why go through this? Should I just accept that I probably have celiac disease and cut out gluten myself?

I don’t understand this. This is like if you made someone with a peanut allergy eat peanuts to test them for an allergy. I can hardly function and I can physically feel the inflammation and churning feeling in my intestines. 
So, has anyone else went this route? I just don’t think the blood test is possible for me anytime soon. Should I go gluten free and wait a few years or so of recovery and then get tested? Go with genetic testing and see what happens? I don’t really know anymore. 

I'm walking in your shoes.  I would most definitely get a genetic test first - you don't need to consume gluten for this.  At least you'll know if your gene positive.  If the genetic test is negative, it's likely something else - such as a wheat allergy.   

I'm gene positive & made it 19 days on the gluten challenge after being gluten-free for 5 years. I was in tears - miserable.  My joints ached so bad, I cried when I walked, nauseated 24/7, swollen, along with several more symptoms. I did the blood test at 19 days & it was negative. as I assumed it would be.

You need a minimum of 6-8 weeks on gluten for the blood test.

As an FYI, you only need to consume gluten for 2 weeks for an endoscopy - which might be a route you'd want to investigate - if you test positive for the Celiac gene/s.

(You can get a genetic cheek swab test on your own w/o going through insurance - google it.  Cost is typically around $130. I personally wouldn't use 23&Me) Good Luck! 

 

  • 5 weeks later...
Nick Cheruka Contributor
Nick Cheruka
Posted
On 7/9/2023 at 10:11 AM, confusedandsick said:

Hi, I recently posted here talking about my journey suffering from (probable) celiac disease/gluten intolerance. So, I got the referral for a blood test.
I can’t do it. I tried to eat gluten for around two weeks. I could barely even eat the recommended daily amount for the test. I’m losing weight, I’m having cognitive impairments, and I feel dangerously ill. I work with heavy, sharp machinery and any sort of cognitive impairment could get me seriously injured. 
Should I try genetic testing? Would it even matter at this point? I clearly have some sort of intolerance to gluten, and many doctors have agreed it sounds exactly like classical celiac. So, why go through this? Should I just accept that I probably have celiac disease and cut out gluten myself?

I don’t understand this. This is like if you made someone with a peanut allergy eat peanuts to test them for an allergy. I can hardly function and I can physically feel the inflammation and churning feeling in my intestines. 
So, has anyone else went this route? I just don’t think the blood test is possible for me anytime soon. Should I go gluten free and wait a few years or so of recovery and then get tested? Go with genetic testing and see what happens? I don’t really know anymore. 

Hi sorry it’s tuff for sure! How long have you been off Gluten if you have been? Do you have a Gastroenterologist? If so ask to have a Endoscopy with Biopsy looking for Celiacs, they can also do the genetic blood work to determine if you even have the genetic gene make up for Celiacs! If you are consuming Gluten or accidentally consuming it via cross contamination or un-known ingredients the blood work itself could show Celiacs as well! I did the bloodwork that pointed to Celiacs over 20yrs ago with a Endoscopy with biopsies to confirm Celiacs, both blood work and biopsy confirmed Celiacs aside from a definite answer like I was able to receive I wouldn’t remove anything from my diet that couldn’t be confirmed especially Gluten it is in everything so if you don’t need to be Gluten Free why do it just by assumption! It’s life long for Celiacs and no cheating or your back to square one! Good Luck☘️I hope you get some help!

  • 2 weeks later...
confusedandsick Rookie
confusedandsick
Posted
  • Author
On 8/10/2023 at 9:50 PM, Nick Cheruka said:

Hi sorry it’s tuff for sure! How long have you been off Gluten if you have been? Do you have a Gastroenterologist? If so ask to have a Endoscopy with Biopsy looking for Celiacs, they can also do the genetic blood work to determine if you even have the genetic gene make up for Celiacs! If you are consuming Gluten or accidentally consuming it via cross contamination or un-known ingredients the blood work itself could show Celiacs as well! I did the bloodwork that pointed to Celiacs over 20yrs ago with a Endoscopy with biopsies to confirm Celiacs, both blood work and biopsy confirmed Celiacs aside from a definite answer like I was able to receive I wouldn’t remove anything from my diet that couldn’t be confirmed especially Gluten it is in everything so if you don’t need to be Gluten Free why do it just by assumption! It’s life long for Celiacs and no cheating or your back to square one! Good Luck☘️I hope you get some help!

Hi, I am going to meet with my new GI doctor in a week. I am going to eventually get an endoscopy/biopsy, and I will be going through the diagnosis process. 
Recently, I’ve been ridiculously busy and haven’t gotten the chance to do the blood work. However, I have been getting exposed to gluten at my work. I haven’t went completely gluten-free, *yet*. I may still take the blood test (I got paperwork for a blood test at my local diagnostics place.) we will see! Thank you for your kind wishes. 

Nick Cheruka Contributor
Nick Cheruka
Posted
8 hours ago, confusedandsick said:

Hi, I am going to meet with my new GI doctor in a week. I am going to eventually get an endoscopy/biopsy, and I will be going through the diagnosis process. 
Recently, I’ve been ridiculously busy and haven’t gotten the chance to do the blood work. However, I have been getting exposed to gluten at my work. I haven’t went completely gluten-free, *yet*. I may still take the blood test (I got paperwork for a blood test at my local diagnostics place.) we will see! Thank you for your kind wishes. 

Your welcome, Good Luck☘️

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

Celiac.com Sponsor (A8-M):


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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,896
    • Most Online (within 30 mins)
      7,748
    Judy M
    Newest Member
    Judy M
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      How Come Gluten Didnt Bother Me In Italy

      By trents · Posted

      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
×
×
  • 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.