Test results help

[awright24]

Hello,

 

I've recently been to the doctors and had blood and stool samples tested. 

My stool samples (2 of which were done just over a week apart) had above normal fecal calprotectin (1st was 78 second was 61) 

My ttg results were 47.9 but had negative endomysial antibodies. 

I get mouth ulcers weekly (dental hygiene is definitely not the issue here) 

Stomach pains, nausea, gas, bloating, constipation but also diarrhoea, but lots of yellow mucus in stools, headaches, joint pain.

My ferritin was 23ug which I've seen is equivocal but, I have inflammation which I've read means that ferritin can show up higher than its true level if inflammation is present? But the doctor didn't say anything about this when I went for the review of the tests. 

Also my immunoglobulin m level was high but the others were all within normal range. 

I came away from the doctors feeling a bit let down as he didn't even read my notes from the doctor who I saw last who ordered rhe results so had no idea why I was there andni had to point out the ttg test result also to him that he hadn't even noticed. 

I have been referred to gastroenterology for further investigations but does anyone have any insight to what could show? I've been told it could be ibd, celiac or could show nothing by the doctor who reviewed my tests. 

[trents]

Welcome to the forum, @awright24!

You left out one important piece of data. What was the reference point used for negative vs. positive for the ttg? You state the test score but not the scale used by the lab. You may not know this but there is no industry standard. Different labs use different scales. We assume from what the tenor of your post that this was a positive result but we cannot tell if it was a strong positive or a weak positive.

[awright24]

14 minutes ago, trents said:

Welcome to the forum, @awright24!

You left out one important piece of data. What was the reference point used for negative vs. positive for the ttg? You state the test score but not the scale used by the lab. You may not know this but there is no industry standard. Different labs use different scales. We assume from what the tenor of your post that this was a positive result but we cannot tell if it was a strong positive or a weak positive.

Hello, sorry I forgot to add it! 

It says the following:

TTG ABS (IGA) 47.9 CU [0.0 - 19.9]; Above high reference limit. 

[trents]

Not sure where you live but in the UK 10x normal limit would qualify you for a celiac diagnosis without an endsocopy/biopsy. Your ttg antibody level isn't nearly that high but it isn't borderline either. It is unlikely that this elevated ttg is caused by something besides celiac disease as the tTG-IgA is very specific for celiac disease. Although the endomysial antibodies were negative (also a very specific test for celiac disease) the endomysial test (aka, "EMA") is a less sensitive test than is the tTG_IGA. So, it is not uncommon for it to be negative when the tTG-IGA is positive. Here is an overview of the tests available to detect celiac disease: 

Logically, your next step should be to get an endoscopy with biopsy of the small bowel lining. I want to emphasize that you should not reduce your gluten consumption until all testing is complete. I would add that you have many classic symptoms of celiac disease.

[awright24]

2 minutes ago, trents said:

Not sure where you live but in the UK 10x normal limit would qualify you for a celiac diagnosis without an endsocopy/biopsy. Your ttg antibody level isn't nearly that high but it isn't borderline either. It is unlikely that this elevated ttg is caused by something besides celiac disease as the tTG-IgA is very specific for celiac disease. Although the endomysial antibodies were negative (also a very specific test for celiac disease) the endomysial test (aka, "EMA") is a less sensitive test than is the tTG_IGA. So, it is not uncommon for it to be negative when the tTG-IGA is positive. Here is an overview of the tests available to detect celiac disease: 

Logically, your next step should be to get an endoscopy with biopsy of the small bowel lining. I want to emphasize that you should not reduce your gluten consumption until all testing is complete. I would add that you have many classic symptoms of celiac disease.

Thank you for that. I know once my referral goes through that I'll most likely get more detailed answers but was just feeling a bit lost as the doctor seemed like they couldn't get rid of me fast enough 😩 

I was leaning towards celiac myself from my test results and symptoms, and research I've done myself online. I'm hoping gastroenterology will do an endoscopy like you have said. Currently sat with 4 mouth ulcers (I've been getting them for years but they were never looked into back when I was a teen and i was given a steroid mouthwash to use when they popped up then) 

I'm definitely still eating gluten as I read that you need to so they get accurate results. I am in the UK also, specifically England so just got to wait now for my referral.  

I appreciate the reply! 😊

[knitty kitty]

@awright24,

Mouth ulcers can be caused by a deficiency in Vitamin B12 Cobalamine.  

Most newly (almost) diagnosed Celiac people have deficiencies in vitamins and minerals which should be corrected.  Many doctors don't recognize deficiency symptoms.  While blood tests aren't accurate for vitamin deficiencies, supplementing with the eight essential B vitamins, Vitamin D, and other vitamins and minerals while healing is beneficial.  

Hope this helps!

References:

Case Report: Recurrent aphthous stomatitis responds to vitamin B12treatment

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1479540/

And...

Cobalamin Deficiency Can Mask Depleted Body Iron Reserves

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4375157/