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

  • 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. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    2. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    4. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,543
    • Most Online (within 30 mins)
      7,748
    Jeanette K.
    Newest Member
    Jeanette K.
    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

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.