Awaiting biopsy results...

[SuffolkLady]

Newbie here looking for words of wisdom or kindness. Sorry if this is a little long winded but I just feel the need to vent. I'm going a little crazy as the hospital told me that I would get my biopsy results within a week and gastroenterology receptionist has just told me it will be weeks more until I hear anything. 

I have Ehlers Danlos (hypermobility with vascular involvement), POTS, diastasis recti and possible mast cell syndrome so I'm used to aches, pains, fatigue, etc. It's been getting worse the past few years and I just thought I was hitting menopause, especially as I've put on weight for the first time in my life!!

I've always had slow motility and bowels open once a week or so, but for the last 5 years I've had bouts of dumping syndrome particularly when eating out despite ruling out ingredients, oils, additives, etc in common. Bloods were normal, ttg was 0.4U/ml and I was referred to gastro. The dumping syndrome has dramatically reduced since I've been on Montelukast for dust allergy.

Coincidentally GP ordered blood tests for recent unexplained leg pains and I got results just before attending gastro. Vitamins D3, folate and B12 all incredibly low and GP was amazed I was even upright!! Gastro ordered endoscopy which I had last week and they saw a small hiatus hernia but nothing else, 8 biopsies taken. 

I guess I'm hoping for celiac as if not, what else could be causing such vitamin malabsorption?? I'm have a relatively healthy diet, probably too many carbs but not too bad, I'm not bulimic, don't have HIV and I'm not a raging alcoholic!! Anyone else had similar vitamin deficiencies?? 

Thanks for listening.  xx

[trents]

Welcome to the forum, @SuffolkLady!

Is the ttg @0.4U/ml a positive or a negative result? Different labs use different reference scales so raw numbers like that aren't helpful. There aren't industry standards for the way the tests are concocted so different labs use different scales for negative vs. positive. Was that the only celiac antibody test that was run? Was there a total IGA test run? If total IGA is low then it will drive the ttg-IGA down toward the negative range.

The vitamin deficiencies you are experiencing are all very common in the celiac population and are classic indicators of celiac disease. We routinely recommend high potency supplementation for certain vitamin and mineral deficiencies for that very reason. Are you also anemic? B12 is necessary for the assimilation of iron.

Edited June 3, 2024 by trents

[SuffolkLady]

Normal ttg range is 0-6. They didn't do the iga antibodies test. GP has started me on B12 injections and highest available doses of D3 and folate.

I've learnt loads about celiac over the last week but I'm scared the biopsy will be negative. I know celiac isn't a fun thing to live with but it is manageable. Better that than something scarier.

So glad you say these vitamin deficiencies are classic indicators because most people talk about the obvious regular diarrhoea symptoms and my bouts are sporadic, constipation is listed as a symptom but isn't discussed as much.

I also occasionally get a very minor rash on both elbows but right is much itchier and blotchier than left, but not sure if I'm desperately reaching for things now or just seeing them in a different light. Patience has never been in my list of virtues and waiting is just so darn hard!! 

[trents]

3 minutes ago, SuffolkLady said:

Normal ttg range is 0-6. They didn't do the iga antibodies test. GP has started me on B12 injections and highest available doses of D3 and folate.

I've learnt loads about celiac over the last week but I'm scared the biopsy will be negative. I know celiac isn't a fun thing to live with but it is manageable. Better that than something scarier.

So glad you say these vitamin deficiencies are classic indicators because most people talk about the obvious regular diarrhoea symptoms and my bouts are sporadic, constipation is listed as a symptom but isn't discussed as much.

I also occasionally get a very minor rash on both elbows but right is much itchier and blotchier than left, but not sure if I'm desperately reaching for things now or just seeing them in a different light. Patience has never been in my list of virtues and waiting is just so darn hard!! 

There is more than one IGA celiac antibody test. Total IGA is not a celiac antibody test per se but the whole IGA pie which includes celiac markers but other things as well. There are also celiac antibody tests that are outside of the IGA spectrum. Terminology can be challenging from one medical system to another and from one lab to another. Here is a primer for celiac antibody testing: 

 

[SuffolkLady]

Sorry, I should have written that they didn't do any antibodies tests. I actually used that post from someone else's topic and triple checked my online blood results over the weekend. Thank you so much for your help, you've been fab.  

[trents]

So the ttg of 0.4/mL is not your test result? That is a celiac antibody test.

[SuffolkLady]

You're quite right, I'm getting myself totally muddled. Brain fog is a pain the wotsit!! The only celiac related blood test they did was the anti tissue transglutiminase, the result was 0.4 but they didn't do the iga defiency test which would account for a false negative. 

[trents]

3 hours ago, SuffolkLady said:

You're quite right, I'm getting myself totally muddled. Brain fog is a pain the wotsit!! The only celiac related blood test they did was the anti tissue transglutiminase, the result was 0.4 but they didn't do the iga defiency test which would account for a false negative. 

It could account for a false negative not "would account for a false negative". It likely would skew the score toward the negative range and if the score was not high to begin with it could create a negative test result. Another factor that can create a negative ttg-iga test result is if someone has already been practicing a gluten free or low gluten diet before the blood draw happens. Another possibility is an idiosyncratic immunes system that mediates the celiac response via the IGG pathway rather than the IGA pathway.