Worth it to push for an endoscopy after negative blood test?

[vintagepop]

I've been dealing with terrible stomach issues for the past 2 years. Constipation, bloating, dull and sharp stomach pain, GERD/burping, fatigue, and brain fog.

I went to see a GI a few months ago, who tested me for a bunch of things, one of them being celiac. They ran 2 celiac tests, total Immunoglobin A and IgA, which both came back normal. However, I did test positive for the celiac gene on a DNA test, and my mother herself is gluten intolerant, so I'm a bit worried if my issues could be gluten related.

I'm seeing my GI this Thursday. When I last saw him and my results were all normal, he told me I had IBS and to take MiraLax, which only worked for a few months, but now is having no effect on me. This time when I see him, should I push for an endoscopy to test for celiac and other gut-related issues? I'd rather do an endoscopy first and then a colonoscopy, since prep for an endoscopy is a lot easier. What do y'all think? I'm desperate here :(

[trents]

Another gluten-related possibility for what is causing your symptoms is NCGS (Non Celiac Gluten Sensitivity). 10x more common than celiac disease and the two share many of the same symptoms. However, there are no definitive tests for NCGS yet. Celiac disease must first be ruled out.

Yes, I think I would push for an endoscopy/biopsy if for no other reason, to rule out celiac disease.

Another option would be to ask for more extensive antibody testing. That which you have had done is pretty minimal in that only two of them. There are other celiac antibody tests that can be run which will catch some who actually do have celiac disease but, for whatever reason, don't throw positives for the tTG-IGA. The other test you had run is a measure of your total serum IGA level. The value of running total serum IGA is that if it is lower than normal it can skew other IGA tests down toward the negative range. So, you might ask for Deamidated gliadin peptide (DGP IgA and IgG). EMA is another one that can be run but it is rather expensive. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

One thing to keep in mind is that you should not begin a gluten free diet until all testing is complete or you will corrupt the results. Once all testing is complete, and if you are negative for celiac disease, I would suggest you trial the gluten free diet to see if symptoms improve. If they do, then you likely have NCGS.

[Scott Adams]

Was your mother ever tested for celiac disease, or is she just self diagnosed with gluten intolerance? 

I ask because at least one study has shown that up to 44% of first degree relatives of celiacs also have celiac disease.

[vintagepop]

2 hours ago, trents said:

Another gluten-related possibility for what is causing your symptoms is NCGS (Non Celiac Gluten Sensitivity). 10x more common than celiac disease and the two share many of the same symptoms. However, there are no definitive tests for NCGS yet. Celiac disease must first be ruled out.

Yes, I think I would push for an endoscopy/biopsy if for no other reason, to rule out celiac disease.

Another option would be to ask for more extensive antibody testing. That which you have had done is pretty minimal in that only two of them. There are other celiac antibody tests that can be run which will catch some who actually do have celiac disease but, for whatever reason, don't throw positives for the tTG-IGA. The other test you had run is a measure of your total serum IGA level. The value of running total serum IGA is that if it is lower than normal it can skew other IGA tests down toward the negative range. So, you might ask for Deamidated gliadin peptide (DGP IgA and IgG). EMA is another one that can be run but it is rather expensive. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

One thing to keep in mind is that you should not begin a gluten free diet until all testing is complete or you will corrupt the results. Once all testing is complete, and if you are negative for celiac disease, I would suggest you trial the gluten free diet to see if symptoms improve. If they do, then you likely have NCGS.

Thank you for letting me know this! I didn't know there was something called a NCGS, so if I get tested again and it is negative then I will keep it in mind. I also didn't know there were other possible tests. I have made sure to eat gluten every day until I see my GI on Thursday and get further instruct4ions from him.

41 minutes ago, Scott Adams said:

Was your mother ever tested for celiac disease, or is she just self diagnosed with gluten intolerance? 

I ask because at least one study has shown that up to 44% of first degree relatives of celiacs also have celiac disease.

My mom said she was diagnosed by a naturopathic doctor, he told her she was intolerant to gluten, as well as to a list of other different foods 

[Scott Adams]

It sounds like your mother may not have had a celiac disease panel, so could have either celiac disease or NCGS. Since you have the genetic marker for celiac disease, and your mother has gluten sensitivity, you have two paths: 1) eat a couple of slices of wheat bread daily for 6-8 weeks and get a full celiac disease blood panel, or: 2) go gluten-free and see if your symptoms go away.

Some people prefer the first route so that they know for sure whether or not they have celiac disease, which can make dietary compliance easier for them.

[Beverage]

Were all of these tests run?

https://www.cureceliacdisease.org/screening/

And were you eating gluten before your blood screening tests?