Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Can you tell the difference between Celiac and Intolerance


Nisha29

Recommended Posts

Nisha29 Newbie

Hi, I’ve labelled myself as intolerant since the few test I can back negative. Recently I went on a delusion where I thought I was having problems with gluten due to exam stress. As a result I’m feeling very unwell at the moment. Can gluten intolerances be severe? I’ve experienced cramping and sore stomach aches constantly, always tired, loss of appetite (which is very unusual as I love food), dizziness and I think a swollen lymph nodes in one armpit. I have another doctors appointment but I’m a bit insecure wether I should ask them to do further testing. 


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



Celiac.com Sponsor (A8-M):



cristiana Veteran
(edited)

Hello Nisha and welcome to the forum.

I wonder if you can tell us a bit more about the testing you have already had?  Were there tests blood tests, an endoscopy, etc?  Were you eating roughly two pieces of normal gluten containing bread or the equivalent up until the testing for about 6-8 weeks?

If you can tell us a bit more this it would be helpful.

Regarding exam stress, I know several people who have had gastric issues around the times of great exam stress but they weren't coeliacs so it could be partly down to stress that you have worsening symptoms - but then again, it might not, so I am glad you are going to see your doctor again.

The difference between gluten intolerance and coeliac disease is the latter condition means gluten causes actual damage to your small intestine known as villous blunting.   Testing allows doctors to tell the difference because otherwise the two conditions can be quite hard to tell apart.

Cristiana

 

Edited by cristiana
trents Grand Master

Nisha, when you had the testing done, had you been trying to eat gluten free? As Christiana explained, going gluten free before celiac testing will invalidate the tests and may result in negative test values even if you do have celiac disease. I also would like to know exactly what tests were administered. Celiac disease diagnosis requires very specific tests to be run to check for antibodies in the blood produced by inflammation to the small bowel lining that ingesting gluten causes for those with celiac disease.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Do you have access to your test results in your medical record and can you post them here, along with reference ranges for what is negative and positive?

Also, many doctors are not very knowledgeable about gluten disorders like NCGS (Non Celiac Gluten Sensitivity) and celiac disease and do not inform their patients not to go gluten free in the weeks leading up to testing and they may not run enough tests to account for variable immune system responses.

NCGS can give quite severe reactions in some people and cause damage to other body systems besides the small bowel lining. Neurological problems are one of those.

Nisha29 Newbie
  On 7/26/2022 at 1:15 PM, cristiana said:

Hello Nisha and welcome to the forum.

I wonder if you can tell us a bit more about the testing you have already had?  Were there tests blood tests, an endoscopy, etc?  Were you eating roughly two pieces of normal gluten containing bread or the equivalent up until the testing for about 6-8 weeks?

If you can tell us a bit more this it would be helpful.

Regarding exam stress, I know several people who have had gastric issues around the times of great exam stress but they weren't coeliacs so it could be partly down to stress that you have worsening symptoms - but then again, it might not, so I am glad you are going to see your doctor again.

The difference between gluten intolerance and coeliac disease is the latter condition means gluten causes actual damage to your small intestine known as villous blunting.   Testing allows doctors to tell the difference because otherwise the two conditions can be quite hard to tell apart.

Cristiana

 

Expand Quote  

I’ve not had much testing but a blood test where Serum creatinine was lower than normal. I’ve only just realised the other test I had was for something else. I’m going back to the doctor for further testing. I was undertaking the assumption they were for this out it seems they were normal blood tests and I was told not to stop eating gluten which I did. I think I forgot due to the stress. I do have a chance I have the genes for it since my grandad was diabetic. 

Nisha29 Newbie
  On 7/26/2022 at 2:14 PM, trents said:

Nisha, when you had the testing done, had you been trying to eat gluten free? As Christiana explained, going gluten free before celiac testing will invalidate the tests and may result in negative test values even if you do have celiac disease. I also would like to know exactly what tests were administered. Celiac disease diagnosis requires very specific tests to be run to check for antibodies in the blood produced by inflammation to the small bowel lining that ingesting gluten causes for those with celiac disease.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Do you have access to your test results in your medical record and can you post them here, along with reference ranges for what is negative and positive?

Also, many doctors are not very knowledgeable about gluten disorders like NCGS (Non Celiac Gluten Sensitivity) and celiac disease and do not inform their patients not to go gluten free in the weeks leading up to testing and they may not run enough tests to account for variable immune system responses.

NCGS can give quite severe reactions in some people and cause damage to other body systems besides the small bowel lining. Neurological problems are one of those.

Expand Quote  

I think I had been gluten free. I was under a lot of stress and forgot about it. I also checked my results and it looks like a normal blood test. I had another test but it doesn’t seem to be related to celiac. The only thing that came out low was Serum creatinine. I’m a bit worried about it being celiac since my Grandad had type 1 diabetes. 

trents Grand Master
(edited)

As Cristiana mentioned, the Mayo Clinic guidelines for a pretest gluten challenge for serum antibody testing are the daily consumption of two slices of wheat bread daily (or the gluten equivalent) for 6-8 weeks leading up to the test. If you are going for an endoscopy with biopsy then the same amount of gluten for at least two weeks leading up to the procedure.

Request: 1. Total IgA, 2. tTG-IGA and 3. Deamidated gliadin peptide (DGP IgA and IgG) if you decide to engage with the pretest gluten challenge and seek antibody testing.

Creatinine level is a measure of kidney function and would not be related to celiac disease or NCGS.

There is some statistical correlation between type 1 diabetes and celiac disease.

Edited by trents
Nisha29 Newbie

Thanks for the advice. I did search online and it said lower creatinine is found in celiac but I decided to play it off as inactivity and stress due to exams. I’ll make sure to ask for those test and see if I can put this to rest.


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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,742
    • Most Online (within 30 mins)
      7,748

    LMR123
    Newest Member
    LMR123
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Marky0320
      Thanks you for this info! I will definitely do more research on it!
    • lizzie42
      Her poop is totally normal since going gluten free. Once or twice per day.  She eats a lot of fruits and veggies. No juice. She said the squeezing is in the spot where her food goes in her belly. Definitely not dehydrated. She drinks tons of water. 
    • knitty kitty
      Hurrah for an official diagnosis!   You may want to put the whole family on gluten free, as a preventative measure for the ones not testing positive right now.  Remember, exposure to gluten triggers the Celiac genes your kids have inherited from you.  Keeping them gluten free now, even though they don't test positive right now, can delay triggering Celiac Disease development in them. 
    • knitty kitty
      @annirosex, Get your Vitamin D level checked.  Low Vitamin D can mess up menstrual cycles.  Vitamin D at healthy levels (80-100) acts as a hormone and regulates your immune system.  Thiamine Vitamin B 1 is needed to activate Vitamin D, so adding thiamine in the form Benfotiamine would be beneficial.  
    • AllyJR
      Thank you! I saw a different provider this week who took one look at all my medical information and declared it was celiac in the first 5 minutes of the appointment. I am still a bit in shock but so very thankful to have an official diagnosis. The doctor told me to have my children tested and one of them came back with a "weak positive" TTG IgA! Not sure what to think about that! This week has been a wild ride. Thankfully this website has such great information! I've been going through all the do's and don't's of cross contact etc. 
×
×
  • Create New...