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

[confusedandsick]

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. 

[KHL]

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]

@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! 

[McNish]

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! 

 

[Nick Cheruka]

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!

[confusedandsick]

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]

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☘️