Testing for/diagnosing celiac

[Scott Adams]

Your doctor seems to be very updated on this, I wish more doctors would follow suit. The biopsy as the gold standard for diagnosis is a very outdated model of diagnosis, and I hope that more doctors get up to date on recent research which shows that most people can be diagnosed without a biopsy.

[Beverage]

3 minutes ago, Scott Adams said:

Your doctor seems to be very updated on this, I wish more doctors would follow suit. The biopsy as the gold standard for diagnosis is a very outdated model of diagnosis, and I hope that more doctors get up to date on recent research which shows that most people can be diagnosed without a biopsy.

Naturopathic doctor who is very on top of things, from Dr. Jonathan Wright's office in the Seattle area.  

[Scott Adams]

To make matters even more confusing, there is a new study that we'll summarize shortly that says that PPI use can cause blood tests for celiac disease to be inaccurate:

https://pubmed.ncbi.nlm.nih.gov/28462884/ 

[trents]

So if I understand the article's conclusion, it is saying use of PPis and NSAIDs/Aspirin in the test sample seemed to mitigate villi flattening. Am I understanding this correctly? If so, that is certainly contrary to other research evidence.

Edited February 12, 2021 by trents

[pokey449]

1 hour ago, Scott Adams said:

To make matters even more confusing, there is a new study that we'll summarize shortly that says that PPI use can cause blood tests for celiac disease to be inaccurate:

https://pubmed.ncbi.nlm.nih.gov/28462884/ 

I assume that’s not my issue now. I’ve been off my PPI for 5 months 

[Scott Adams]

I think the article says that the use of PPIs or NSAIDs can cause your blood antibody levels to be lower, even if you have celiac disease. So using them will mask CD and make diagnosis more difficult.

[pokey449]

13 minutes ago, Scott Adams said:

I think the article says that the use of PPIs or NSAIDs can cause your blood antibody levels to be lower, even if you have celiac disease. So using them will mask celiac disease and make diagnosis more difficult.

I guess either way it’s water under the bridge in my case. There does not seem to be at this time any other test available ( is there) to clearly indicate whether I have celiac or not. I’ve got mildly blunted villi with negative serology and that’s all I know. I might, I might not have celiac. My assumption is all I can do is stay gluten free for a while, see if my sxs improve and then perhaps do a gluten challenge to see if I get a reaction???? 

[Beverage]

Did you get the dna test?

[pokey449]

No. What is the DNA test for gluten sensitivity/celiac?? 

[Beverage]

You can search the topics to find out more, but the DNA test would determine if you have the possibility to develop Celiac's or not. The DNA does not indicate if you have triggered it, and you have active Celiac's, it only tells you if you have the potential to trigger / activate it.

You need to make sure that wherever you get the test done does all the alleles in your DNA, not just the most likely ones that are involved. I don't recall the percentage, but a vast majority of people do have the potential for it, i.e., it's in their DNA to possibly get it, but they never do trigger / develop it.  If you do not have any of the markers in your DNA, you can eliminate that as a possibility.  Also, if a person does not go through the endoscopy, it is one of the 3 things that can get you an official Celiac diagnosis, which is what I did, however, not all docs are up to date with this.

The 3 things for a Celiac diagnosis without the endoscopy are:  1. positive blood test 2. positive DNA test, 3. good response to a gluten free diet.

I got mine done at http://genetrack.com/.

 

[pokey449]

So far all that’s been shown is I have mild villi blunting and negative serology but I had been trying to avoid gluten beforehand because I was put on a low FODMAP diet due to having been diagnosed with SIBO. I was told to avoid foods with gluten because many such foods, like bread had sugars in them I was supposed to be avoiding. So I attempted to go gluten free. I did continue to eat regular oatmeal though up through having the blood tests. I’m trying to figure how to determine if I’m celiac or gluten sensitive for sure as going totally gluten free is a pain in the ass. I’d like to know if it’s justified/necessary before going to all the trouble. The only clear cut way to prove it one way or the other it seems is to go gluten free, watch your symptoms and then do a gluten challenge and see if the symptoms return. None of the usual tests seem to be conclusive. 

[Beverage]

Yes this is why Celiac's is so hard to diagnose. I was lucky in a way that although I had no intestinal symptoms, my kidneys were failing, but my Celiac blood tests were off the charts.  It took a naturopathic doctor in 15 minutes to figure out what traditional docs could not in 30 years.  Best of luck.

[GFinDC]

1 hour ago, pokey449 said:

So far all that’s been shown is I have mild villi blunting and negative serology but I had been trying to avoid gluten beforehand because I was put on a low FODMAP diet due to having been diagnosed with SIBO. I was told to avoid foods with gluten because many such foods, like bread had sugars in them I was supposed to be avoiding. So I attempted to go gluten free. I did continue to eat regular oatmeal though up through having the blood tests. I’m trying to figure how to determine if I’m celiac or gluten sensitive for sure as going totally gluten free is a pain in the ass. I’d like to know if it’s justified/necessary before going to all the trouble. The only clear cut way to prove it one way or the other it seems is to go gluten free, watch your symptoms and then do a gluten challenge and see if the symptoms return. None of the usual tests seem to be conclusive. 

Hi Pokey,

Your plan of doing a gluten challenge after being gluten-free a while makes sense to me.  If you can eat gluten for a few months then you could get another blood antibody test.  If you can't make it through a couple months of eating gluten then does it really matter what any test says?   Survey says - NO ?

If you need a name for your condition I will gladly call you a potential/probable celiac.  While it's nice to have clear answers we don't always get them.  Or the cost to get them is too high.  There have been forum members in past years who did gluten challenges and developed symptoms that didn't clear up after going gluten-free again.  Or in some cases developed additional food intolerances that they didn't have before.  So there is some risk in doing a gluten challenge IMHO.

I think you know that there are a variety of other AI conditions associated with celiac disease?  We don't know how these other AI's get triggered but once they start they tend to stay.

I don't remember if you have had blood testing for vitamin/mineral deficiencies?  If you have any of the common celiac disease deficiencies that would seem to indicate villi damage.  Villi damage happens for some reason.  NCGS (non-celiac gluten sensitivity) does not cause villi damage because there are no antibodies involved.