Getting a DX

[Patrisha22]

Had labs done this week, but haven’t heard back from dr. But my labs say “no serological evidence for celiac... Consider IGA deficiency” I kind of went about everything backwards. Had c-scope and EGD 2 weeks ago. Biopsy showed white blood cells in my small intestine. Dr said could mean celiac, gluten intolerance, food allergy. So that’s why we did labs... I have a lot of the other symptoms that go with celiac... anxiety is getting the best of me wanting to know what’s going on!!! 

[kareng]

16 minutes ago, Patrisha22 said:

Had labs done this week, but haven’t heard back from dr. But my labs say “no serological evidence for celiac... Consider IGA deficiency” I kind of went about everything backwards. Had c-scope and EGD 2 weeks ago. Biopsy showed white blood cells in my small intestine. Dr said could mean celiac, gluten intolerance, food allergy. So that’s why we did labs... I have a lot of the other symptoms that go with celiac... anxiety is getting the best of me wanting to know what’s going on!!! 

So, let’s figure out why it says “IGA deficiency”.  Can you list all the blood test ( for Celiac) with the results and ranges?.  If they only did IGA tests and you are actually IGA deficient - the tests aren’t accurate.

[Patrisha22]

The top one is the most recent one the bottom one is from 2013?

[GFinDC]

I can't say for sure, but it seems like red ink is usually an indicator of something wrong.  You were eating gluten before the testing right?  If you weren't eating gluten for the 12 weeks prior to testing your blood the results are not reliable.  For the endoscopy you need to eat gluten for at least 2 weeks before.

[Patrisha22]

Yes, I was eating gluten. 

[GFinDC]

OK, well that's good Patrisha.  The picture seems to show only IgA results.  There is also an IgG test they can do.  and another one called EMA.  So it doesn't look like you had a complete celiac panel.

There is a small percentage of people who don't make the IgA antibodies.  They are IgA deficient.  So IgA tests don't work for them.   They would need the IgG and EMA tests instead.

IgA deficiency is more common in people with celiac disease.  Doctors often run just the IgA tests as a less expensive  screening test.

[Patrisha22]

So I should ask the dr for more labs if he doesn’t already do them. Thanks for the insigh! 

[kareng]

10 hours ago, Patrisha22 said:

The top one is the most recent one the bottom one is from 2013?

So your “ total IGA” is low for the original use of the test.  For Celiac disease it is high enough.  The way it is used for Celiac is, simply put, to see if you can make an IGA response or not.  There are a very few people who do not and require a different test.

 

https://www.cureceliacdisease.org/faq/is-an-iga-result-of-39-where-normal-is-81-463-considered-deficient-and-could-it-invalidate-anti-iga-tests/

“Any level of IgA above 20 mg/dl should make the tTG-IgA test valid, regardless of age.”

https://www.cureceliacdisease.org/faq/how-common-is-iga-deficiency-in-those-with-celiac-disease/

“2-5% of those with celiac disease are IgA-deficient, and 0.5-1% of the general population. If IgA deficient, or if there is some other equivocating factor to potentially compromise the blood test, then an EMA blood test is also given. “

 

 

 

 

[cyclinglady]

You are a bit low on Immunoglobulin A (IgA),  but this test is used as a control test to validate any IgA test used for celiac disease (e.g. TTG IgA).  Your results indicate that you do not have celiac disease.  But some celiacs are seronegative.  

Your case is not clear cut.  I bet your doctor will advise you to trial the gluten free diet.  If you feel better, you will have your answer.  Do not test other common food allergens  at the same time (e.g. eggs)  this will muddle the experiment.  Though milk might be helpful because it is a known allergen (milk proteins) but it also is hard to digest (lactose intolerance) for many celiacs (or if you are genetically predisposed to be lactose intolerant).  Trial the diet for at least six months.  You might feel better fast or it could take more time.  Why?  The gluten-free diet has a very steep learning curve.   Doctors often forget this!  

Keep us posted.  You may help someone else who is struggling with the very same set of issues.  

[Patrisha22]

Thanks for the insight!! Will definitely keep updated!!! 

[Patrisha22]

So dr. Got back with me about the labs and all that was said was negative for celiac. No recommendations or nothing. 

[frieze]

now it is in your court, push for the rest, or try the diet, very strictly for several months.

[RoseMG]

I had a similar experience. 

Had one endoscopy on a normal diet which showed increased lymphocytes and no blunting, but tested negative for the TTG and not IgA deficient. However, my deaminated gliadin (see image) was slightly elevated at 27. Doctors don't usually do this blood test, focusing more on TTG. Might want to ask for this.

The doctor was dissatisfied and sent me to a Celiac center. They had me do a gluten challenge (since previously I never was much of a bread eater) which was two slices of bread a day at minimum. The endoscopy was then repeated and showed severe damage. Additionally, my TTG became "faintly positive" (like a 4 haha) and my deaminated gliadin continued to climb, although just a bit. 

So some people just don't test very high according to the specialist, especially if it's early in the disease.  Deaminated Gliadin Peptide Antibodies should always be assessed along with Tissue Transglutaminase Antibody.

[cyclinglady]

You can trial the gluten-free diet (it will not hurt you), or keep working to figure out a diagnosis.  White blood cells in the gut can be attributed to many things besides celiac disease.  

https://www.cureceliacdisease.org/wp-content/uploads/CdC_Newsletter_2016_Issue01_FINAL.pdf