Can you tell the difference between Celiac and Intolerance

[Nisha29]

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. 

[cristiana]

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 July 26, 2022 by cristiana

[trents]

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]

2 hours ago, 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

 

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]

2 hours ago, 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.

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]

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 July 26, 2022 by trents

[Nisha29]

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.