To biopsy or not?

[kathysb918]

I recently took the Imaware Celiac test and these were my numbers:
 

tTG IgA  8.49 (weak positive)

tTG IgG  4.91 (negative)

DGP IgA  22.72 (positive)

DGP IgG 43.60 (positive)
I followed up with my primary care doctor and she did  another blood test, and these were my results: 
EMA  negative
tTG  8
IgA 190
She didn't test the DGP.  She has referred me to my GI doctor, but I just had an endoscopy in May of 2019 and it was negative.  I was having lots of GI pain and went through several tests that all came out negative or inconclusive.  That pain went away towards the end of the year, and I honestly think it was stress related because of things going on in my life at the time.  The symptoms that led me to try the Imaware test are extreme fatigue and joint pain.   My primary Doc has tested me for (lupus, Lyme, and RA.) I am conflicted about getting another endoscopy (I have had 3 in the last several years...I have GERD) because of the 'weak positive' and the negative EMA.   I know these numbers can be related to other things. I do have hypothyroid, but have not been diagnosed with Hashimoto's.  
I guess I am just looking for advice or experiences of others that might have been in this situation.  Did you go ahead with the endo?  Did you just go gluten-free and see if that resolved the symptoms?  I haven't even scheduled the appt with my GI yet, and she might even say to wait.  So...advice?  Opinions?

[Scott Adams]

The DGP tests are very accurate, and do indicate celiac disease, so it makes sense for your doctor to follow it up with an endoscope and biopsy.

Were you eating gluten daily in the weeks leading up to these blood tests? If not the scores would likely have been higher.

If you need a formal diagnosis to help keep you on a gluten-free diet for life, I would do the test. It is possible that the biopsy will be negative or inconclusive, and should this happen I would still go gluten-free given your blood test results—you’ve got gluten sensitivity at the very least.

If you do get the biopsy be sure to keep eating gluten daily for at least two weeks prior to it.

[kathysb918]

Thank you for your response!
I wasn't purposely avoiding gluten, although I can't say I was eating it daily.  I don't need the official dx to keep me on the diet for life, especially if it helps me feel better.  I guess I just need the push to make the decision either way   I think I just have 'test fatigue' after the last few years and am just wary from spending money and taking time off work for tests and doctor's appointments that don't tell me anything.  I feel like with a normal scope last year and weak numbers at this point, would it really even show anything?  Who knows 🤥

[trents]

I expect that if you had been eating significant amounts of gluten on a daily basis leading up to the tests the results might have been more conclusive in the direction of Celiac disease. Personally, I feel you should do a gluten-free trial diet for several months and see if you don't feel better. Test confirmation, particularly the biopsy, can be helpful to the resolve of many people not to cheat on the gluten-free diet but you say this will not be a problem for you.

Edited November 15, 2020 by trents

[kathysb918]

2 minutes ago, trents said:

I expect that if you had been eating significant amounts of gluten on a daily basis leading up to the tests the results might have been more conclusive in the direction of Celiac disease. Personally, I feel you should do a gluten-free trial die for several months and see if you don't feel better. Test confirmation, particularly the biopsy, can be helpful to the resolve of many people not to cheat on the gluten-free diet but you say this will not be a problem for you.

No, it won't be a problem to stay on the diet...well, as far as my determination..not saying it's an easy diet!  I'm a registered dietitian, so I know what to look for and I understand how important it is..and more importantly, I am so ready to feel better, that I will do what it takes to get there.  
Thanks for your input!  

[GFinDC]

Hi Kathy,

Getting a medical diagnosis is helpful for some people.  But it is not necessary to have it.  Medical treatment after diagnosis is sometimes lacking.  Some follow up actions that may happen are a referral to a dietician for gluten-free diet advice, (I think you have that covered already), perhaps follow up blood antibody testing in 6 months or a year to see if antibody numbers have dropped, nutrient levels like vitamins and minerals, or perhaps even a follow up endoscopy, although I think that is unusual.  At times the treatment seems to be a doctor saying go home and don't eat gluten.

The vitamin and mineral levels are something to be aware of though.  It seems like celiacs are low on vitamin D and some B vitamins at diagnosis and sometimes years afterwards.  So it's worth getting those checked once a year or so IMHO.  Rx vitamin D once a week is not real helpful I don't think.  At least it didn't raise my levels much.  A regular vitamin D supplement daily did raise them though.

Going gluten-free is a process of learning things to avoid and getting used to eating differently.  It can take a few months to get it right.  Often enough people going gluten-free expect to have immediate recovery in days or weeks.  But symptoms can linger for 6 months or a couple years at times.  The immune system is pretty serious about doings it's job.  Even when we stop eating gluten it takes time for the immune attack to subside.

Simple gluten-free diet advice: processed foods bad, whole foods good.

[kathysb918]

I had my B12 and D levels checked back in January, and both were normal, but on the low end of normal.  I was already taking a supplement for both, and my doc told me to continue doing that.  So that's a daily thing for me, along with a multi.  I do know the basics, but I still have a lot to learn.  I am reading everything I can find, and these forums help a lot!  I have read multiple stories of people with my exact symptoms, and of it taking a while for those symptoms to subside, so I am preparing myself for that...but I am hopeful none the less!  Just to have my suspicions validated helps me mentally, if that makes sense! 
Thanks for the input!