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Testing for/diagnosing celiac

pokey449
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pokey449 Enthusiast
pokey449
Posted

This past summer I was diagnosed with SIBO and received treatment. The SIBO got killed off but I kept having nausea and other symptoms. I also have a history of GERD. I had stopped my PPI because of the association between PPI use and SIBO. My GERD sxs started coming back along with persistent nausea. My GI doc decided to do an upper endoscopy and while doing so did biopsies to test for H pylori and celiac. MY endoscopy showed visually normal appearing esophagus, stomach and duodenum. The biopsies showed no H pylori, but did show mild villous blunting which per the path report said it might be an indication for celiac if confirmed with serology. Now my GI doc wants me to have blood work done for celiac. The thing is though when I got diagnosed with SIBO I went on a low FODMAP diet and a gluten free diet. Ive been on gluten free diet for 5 months. Now I am informed to do the blood tests I have to go back on gluten for 4 weeks for the test to be accurate. Im not sure I want to do that as it seems my overall gut and constitutional symptoms are slowly improving. And as I understand a biopsy the gold std that is used to confirm celiac and to prove or disprove blood tests for celiac, blood tests are not used to prove or disprove results of a biopsy. That said Are there any other blood tests for celiac that could substantiate or disprove the the biopsy that dont require being on a gluten diet. Ive been having a pretty miserable time these past 5-6 months getting to where I am at this point, Id hate to "fire things up" all over for one blood test. thanks

Pokey449

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Scott Adams Grand Master
Scott Adams
Posted

Actually for a blood test you really need to eat around a slice of wheat bread a day for 12 weeks:

 If you are happily on a gluten-free diet, and it is relieving your symptoms, then do you really need to get an official diagnosis? The villi blunting, even after being gluten-free for so long, combined with your symptom improvement, might be enough for you to realize that gluten and you don't mix too well.

However, I've seen many people come back here after a few years being gluten-free who went back to eating gluten because they weren't sure of their diagnosis, only to have the same issues come back, then have to go through testing, the results of which may be inconclusive because they have non-celiac gluten sensitivity.

It's really your call if you want to get a diagnosis or not, and there can be positives and negatives to doing this. Negatives include possible higher life and health insurance rates. Positives include follow up testing, although my doctor any many others don't actually do this unless you ask them for it.

trents Grand Master
trents
Posted

Also, research has shown that there are other foods and also medications that can cause villi blunting.

pokey449 Enthusiast
pokey449
Posted
  • Author
24 minutes ago, Scott Adams said:

Actually for a blood test you really need to eat around a slice of wheat bread a day for 12 weeks:

 If you are happily on a gluten-free diet, and it is relieving your symptoms, then do you really need to get an official diagnosis? The villi blunting, even after being gluten-free for so long, combined with your symptom improvement, might be enough for you to realize that gluten and you don't mix too well.

However, I've seen many people come back here after a few years being gluten-free who went back to eating gluten because they weren't sure of their diagnosis, only to have the same issues come back, then have to go through testing, the results of which may be inconclusive because they have non-celiac gluten sensitivity.

It's really your call if you want to get a diagnosis or not, and there can be positives and negatives to doing this. Negatives include possible higher life and health insurance rates. Positives include follow up testing, although my doctor any many others don't actually do this unless you ask them for it.

If I go back on a gluten diet, even just a slice  of bread once a day isn't there a chance those symptoms will come roaring back

knitty kitty Grand Master
knitty kitty
Posted

Would a genetic test for the most common Celiac Disease genes be a possibility? 

If you've got the genes and the villi damage from the biopsy, would that be enough for your doctor to make a definite Celiac diagnosis?

 

pokey449 Enthusiast
pokey449
Posted
  • Author

Scott: I just saw the link to the discussion on "Gluten Challenge" INteresting that my GI doc says to eat bread for 4 weeks, not 12. Ill talk over the pros/cons with my PCP and decide what to do. I have a tendency stay away from gluten now now to just try and feel better and get well and revisit this down the road

2 minutes ago, knitty kitty said:

Would a genetic test for the most common Celiac Disease genes be a possibility? 

If you've got the genes and the villi damage from the biopsy, would that be enough for your doctor to make a definite Celiac diagnosis?

 

Kitty: I dont know, I will ask about genetic tests. This is all very new and confusing, especially when I add in all my GI sxs and trying to decide whats causing what

Scott Adams Grand Master
Scott Adams
Posted
6 minutes ago, pokey449 said:

If I go back on a gluten diet, even just a slice  of bread once a day isn't there a chance those symptoms will come roaring back

To me this makes it a pretty clear cut case of gluten sensitivity, and likely celiac disease. Personally if it is this black and white for you I would not undergo the torture of a gluten challenge. The gene test could be done at any time, but would not confirm diagnosis.

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Kate333 Rising Star
Kate333
Posted
29 minutes ago, trents said:

Also, research has shown that there are other foods and also medications that can cause villi blunting.

Such as.....??

knitty kitty Grand Master
knitty kitty
Posted

Conditions That Cause Villous Atrophy

https://www.verywellhealth.com/villous-atrophy-562583

 

pokey449 Enthusiast
pokey449
Posted
  • Author

I have just learned that the oatmeal that I have been eating while supposedly on a gluten free diet the past 5 months is not gluten free. I eat it at least every other day and sometimes 2x per day. So given that my GI doctor wants me to have a TTG IGA blood test to compare with my biopsy results would this level of gluten ingestion be enough to create enough antibodies to consider the blood test to be accurate? 

trents Grand Master
trents
Posted

Does the oatmeal give you any symptoms? Not sure if that level of cross contamination would be enough to produce a valid blood antibody test.

And did you know that about 10% of celiacs react to oat gluten like they do wheat, barley and rye gluten? Maybe not the best choice of hot breakfast cereals.

And how did you find out it was not gluten free?

pokey449 Enthusiast
pokey449
Posted
  • Author

It’s hard to tell. I don’t notice any additional sxs from the oatmeal. Actually it tends to settle my stomach. I don’t know  if all the sxs I have been having lately  are from SIBO, reflux or gluten. It seems they are all interrelated and it’s hard to tell what’s causing what.  This possible celiac is a new twist for me. At this point I don’t know for sure if I even have celiac. I found out the oatmeal was not gluten free by calling the company that produced the oatmeal and they said it was not gluten free. You mentioned “ oat gluten”. I didn’t think oats contained gluten per se. I’ve contacted my GI doc to ask if he thinks the oatmeal is enough to make the blood test valid. 

Scott Adams Grand Master
Scott Adams
Posted

My guess is that the oatmeal would be pretty low in gluten, and would not be enough, since they recommend a slice of wheat bread per day for a gluten challenge.

trents Grand Master
trents
Posted
6 hours ago, pokey449 said:

It’s hard to tell. I don’t notice any additional sxs from the oatmeal. Actually it tends to settle my stomach. I don’t know  if all the sxs I have been having lately  are from SIBO, reflux or gluten. It seems they are all interrelated and it’s hard to tell what’s causing what.  This possible celiac is a new twist for me. At this point I don’t know for sure if I even have celiac. I found out the oatmeal was not gluten free by calling the company that produced the oatmeal and they said it was not gluten free. You mentioned “ oat gluten”. I didn’t think oats contained gluten per se. I’ve contacted my GI doc to ask if he thinks the oatmeal is enough to make the blood test valid. 

In common use the term "gluten" has come to refer to the particular kind of gluten found in wheat, barley and rye that is famous for causing inflammation in the gut of those with active celiac disease. But all cereal grains contain some form of gluten. The gluten in oats is biochemically different enough from that in wheat, barley and rye that it is safe for most celiacs, but not all. 

GFinDC Veteran
GFinDC
Posted
12 hours ago, pokey449 said:

It’s hard to tell. I don’t notice any additional sxs from the oatmeal. Actually it tends to settle my stomach. I don’t know  if all the sxs I have been having lately  are from SIBO, reflux or gluten. It seems they are all interrelated and it’s hard to tell what’s causing what.  This possible celiac is a new twist for me. At this point I don’t know for sure if I even have celiac. I found out the oatmeal was not gluten free by calling the company that produced the oatmeal and they said it was not gluten free. You mentioned “ oat gluten”. I didn’t think oats contained gluten per se. I’ve contacted my GI doc to ask if he thinks the oatmeal is enough to make the blood test valid. 

Yes, absolutely your symptoms can become worse.  Some people don't finish the gluten challenge because of the symptoms it causes.

We can become sensitive to many foods besides gluten.  Until your gut heals and your immune system settles down you will probably continue to have symptoms.  Especially if you have developed additional food intolerances.  The best test for additional food intolerances is to do an elimination diet,

pokey449 Enthusiast
pokey449
Posted
  • Author

Wel I’m going to go ahead and get the blood test in hopes of unfortunatelynot being on a strict gluten free diet when I thought I was will yield accurate results. I’m not willing to go thru another possible 12 weeks of misery for one lousy blood test. I’ll go gluten free and hopefully after feeling well I can reconsider or just stay gluten free. Whatever all is going on with my gut is affecting my whole being and has been going on far to long without resolution. I need to find relief gluten or no gluten. 

Scott Adams Grand Master
Scott Adams
Posted

Let us know how it turns out.

pokey449 Enthusiast
pokey449
Posted
  • Author

I heard back from my GI doc. He wants me to go ahead and get the blood test as well claiming I’ve likely had gluten sneaking into my diet more than just the oatmeal I’ve been eating. 

trents Grand Master
trents
Posted

That sounds like a good plan. It is extremely challenging to eat truly gluten free.

pokey449 Enthusiast
pokey449
Posted
  • Author

Ok go results back on IGA test saying 327mg/dL. This is a normal level. However the report said there was a glitch in that the sample was partially centrifuged upon arrival to the lab and had to be re-centrifuged. To interpret the results with caution. So should I ask that it be repeated at no charge?? 

Other question. The lab order said to do a test for TTG IGA. Are they one in the  same or is that two different tests, TTG and IGA??? 

Scott Adams Grand Master
Scott Adams
Posted

If they will do the test again without charge, why not? Here is more info on the typical recommended blood testing protocol:

 

trents Grand Master
trents
Posted
47 minutes ago, pokey449 said:

Ok go results back on IGA test saying 327mg/dL. This is a normal level. However the report said there was a glitch in that the sample was partially centrifuged upon arrival to the lab and had to be re-centrifuged. To interpret the results with caution. So should I ask that it be repeated at no charge?? 

Other question. The lab order said to do a test for TTG IGA. Are they one in the  same or is that two different tests, TTG and IGA??? 

The TTG IGA is one test, not testing for two different antibodies. The TTG is the most specific for celiac disease and the most important one. Absolutely, you should be retested and have this one included for sure.

pokey449 Enthusiast
pokey449
Posted
  • Author

Ok I got two blood test results back. 
TTG IGA 0.4u/ml and IGA 327 u/dL. Both noted as “normal” So I have mild villi blunting with normal blood tests thus far. I understand these test results indicate that I might, I might not have celiac. Villi blunting apparently can be caused by PPIs which I was on for 17 years or can be caused by SIBO which I was diagnosed with this past summer. There are other causes of villi blunting but which I don’t think apply to me. So what does one do with all this? Go gluten free and see if it helps with sxs given one can be gluten sensitive w/o having celiac?? Retest for SIBO?? Go back on a PPI??  It’s all very baffling. 

trents Grand Master
trents
Posted

There are some other medications and medical conditions that can cause villi blunting. Some blood pressure meds, some NSAIDS, and an antibiotic or so. I think Chron's maybe. Someone posted a link the other day addressing this issue. I would suggest googling something like, "What can cause villous atrophy besides celiac disease?"

Beverage Rising Star
Beverage
Posted

I did not get the endoscopy and I do have an official written diagnosis from a doctor. I'm in the U.S. 

We had to satisfy 3 criteria:  1. positive antibody test  2. positive DNA test  and  3. good response to a gluten free diet.

 

 

 

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