Negative Celiac blood test but low-ish IgA & could this be NCGS?

[MLA1996]

Hello everyone, 

First: thank you for taking to effort to read this. 

I'm a 26 year old female and have been struggling with my health for almost a year. 

Some tests were done (e.g. MRI for MS) but I haven't gotten a diagnosis: they cannot find anything wrong with me. I recently read about celiac disease and I recognised a lot of my symptoms, so my blood got tested for that. It might be a bit weird, but I was hoping the test would come back positive.

Unfortunately, it wasn't. So that brings me to my first question: I've read that low IgA can lead to a false negative test. My IgA was low-ish. So I'm wondering: can a IgA value of 1.03 (range 0.7-3.8) cause the IgA tTG test to be negative? I did not receive the exact values of the IgA tTG test, by the way. Only that it was negative. 

And then, my second question. Since it appears that it's not celiac causing my health struggles, I'm wondering if NCGS could cause such a wide range of symptoms? 

My symptoms since 04-2022, (before that I was mostly healthy): 

- Nerve pain in my hands

- Nerve pain in my butt 

- Tingling in my hands 

- Sometimes UTI symptoms without having an UTI 

- Tingling and twitching face 

- Muscle twitches/fasciculations all over my body 

- Nightmares/vivid dreams every night (this has been ongoing for about 7 years)

- Extreme bloating 

- Lots and lots of burping. Sometimes 10x a minute or something 

- Constipation 

- White gel in my stool (sorry, might be TMI)

- Sometimes nauseous and stomachache

Again, thanks a lot for reading this! Since the test is negative I'm starting to become quite desperate as to getting to know what might be causing all this.

 

[trents]

Yes, you could have NCGS and most of the symptoms you list are neurological in nature. celiac disease and NCGS share many of the same symptoms. Neurological problems are one of the main and well-known symptoms of NCGS. Mucous in your stool is a common symptom of celiac disease, however, indicating damage to the small bowel villi or possibly malabsorption of fats and oills. Did they run any more celiac antibody tests besides the total IGA and the tTG-IGA. I would certainly push for more tests. Here is a primer on what tests can be run: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[Wheatwacked]

Unfortunately for some people it takes 10 or more years to finally find out the symptoms were Celiac Disease all along. The diagnostic protocol for NCGS is to first eliminate Celiac and show improvement on Gluten free diet. Either way treatment is the same. Gluten free food and fix the nutrient deficiencies. Gluten is very addictive and you can at first have withdrawal symptoms but in a few weeks you start feeling better. Some sypmptoms improve immediately but it takes time. My son was diagnosed as an infant on weaning, it took six months on Nutramegan to fix the nutritional deficiencies and to heal completely. I was 63 when the symptoms became overwhelming and it has taken 8 years most of that time wasted in believing that GFD alone was the answer and the minimum RDA for vitamins and minerals was sufficient.

[MLA1996]

51 minutes ago, trents said:

Yes, you could have NCGS and most of the symptoms you list are neurological in nature. celiac disease and NCGS share many of the same symptoms. Neurological problems are one of the main and well-known symptoms of NCGS. Mucous in your stool is a common symptom of celiac disease, however, indicating damage to the small bowel villi or possibly malabsorption of fats and oills. Did they run any more celiac antibody tests besides the total IGA and the tTG-IGA. I would certainly push for more tests. Here is a primer on what tests can be run: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Thank you for your quick response! They unfortunately only ran the IgA and tTG-IgA tests. My doctor is once of those that convinced me my problems couldn't be celiac related since celiac (according to her...) requires patients to have diarrhea. So it was already really hard to get this test. I will try when I speak to her to ask about the other tests but I'm pretty sure she will decline that. So I think trying to eat gluten free is my best bet for now. I will start doing that once I've spoken to her so that if she will order more testing, the results are more reliable. 

44 minutes ago, Wheatwacked said:

Unfortunately for some people it takes 10 or more years to finally find out the symptoms were Celiac Disease all along. The diagnostic protocol for NCGS is to first eliminate Celiac and show improvement on Gluten free diet. Either way treatment is the same. Gluten free food and fix the nutrient deficiencies. Gluten is very addictive and you can at first have withdrawal symptoms but in a few weeks you start feeling better. Some sypmptoms improve immediately but it takes time. My son was diagnosed as an infant on weaning, it took six months on Nutramegan to fix the nutritional deficiencies and to heal completely. I was 63 when the symptoms became overwhelming and it has taken 8 years most of that time wasted in believing that GFD alone was the answer and the minimum RDA for vitamins and minerals was sufficient.

Thank you for your response and I'm really sorry to hear about your path. I'm hoping you feel better now!

[Wheatwacked]

I am. Thank you.

[trents]

MLA1996, before you go on a gluten-free diet, realize that doing so will sabotage any subsequent testing, such as an endoscopy with biopsy or additional antibody testing. But, beginning a gluten-free diet to test the waters is certainly a reasonable option if you plan on foregoing additional testing. If, however, you would like to have more testing done and are willing to forego the gluten-free diet for a while longer, I would change docs to someone who is up to speed on diagnosing celiac disease and more familiar with the range of symptoms, including non GI ones. Along that line, you might ask for a referral to a GI specialist. There is also the option of private, third party testing with home kits from companies like Imaware (about $100 US I think).

[MLA1996]

Thank you for all the information Trents, I will take this into account!