Confused is an understatement

[beyondbabs23]

Hello! 

I am new to this so forgive my ignorance.

I was given a GI referral after what seemed like diverticulitis and an ER visit. They ran a Celiac blood test, ESR, CRP and fecal calprotectin test. All were negative but they state Celiac was positive and needed EGD. They never called but mailed me a letter stating my biopsy was negative for Celiac and H. Pylori. I cannot get my doctor to contact me back. 

So i figured until then this might be a safe space. I haven’t went completely gluten-free yet, because if my biopsy and nobody telling me otherwise. However from my blood tests I’m confused. 

I was reading that most people have IgA positive. I am not only IgA and EMA negative, I am only IgG positive, is that still indicative of Celiac or something worse? Any help is appreciated! 

My results were as follows:

Deamidated Gliadin Abs, IgA = 8

Deamidated Gliadin Abs, IgG = 41 H

tTG IgA = <2

tTG IgG = 10 H

Endomysial Antibody IgA = Negative 

Immunoglobulin A Qn, Serum = 250

[trents]

Welcome to the forum, @beyondbabs23!

Your post is confusing. You typed, "They ran a Celiac blood test, ESR, CRP and fecal calprotectin test. All were negative but they state Celiac was positive and needed EGD." It is not true that all your celiac blood tests were negative. The Deamidated Gliadin Abs, IgG (aka, "DGP-IGG") at 41 is positive and that is in fact a celiac antibody blood test. The IGG tests are second tier celiac antibody tests and not quite as specific as the IGA tests. But they are still to be taken seriously and more often than not do indicate celiac disease. The IGA tests are first tier diagnostic tests and the tTG-IGA is the centerpiece of that group, the one most often ordered by physicians when checking for celiac disease. It is relatively inexpensive, very sensitive and very specific for celiac disease. However, some people who actually do have celiac disease, for whatever reason, will still test negative on it. That is the importance of running a full celiac panel.

I'm not sure what you mean when you say you were "reading that most people have IGA positive". Do you mean most people with celiac disease? And which IGA measurement are you talking about? There are several IGA antibody tests that can be run when checking for celiac disease. It is true that most people are not IGA "deficient" and one of the tests that should be run, commonly known as "total IGA" (Immunoglobulin A Qn, Serum = 250 in your post above) tests for IGA deficiency. If someone is IGA deficient, this can cause false negatives in the individual IGA antibody tests such as the tTG-IGA and DGP-IGA. At 250, you are not IGA deficient. I will include an article on Celiac Blood Antibody Testing in this post.

As to your negative biopsy, perhaps the onset of your celiac disease (if you have it) is so recent that very little damage has been done to the small bowel villous lining, or the damage was patchy and missed by the sampling.

Another possibility is that you don't have celiac disease but NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both.

It would seem your next logical step would be to eliminate gluten from your life for about three months and see if your symptoms improve. Easier said than done. Easy to lower gluten intake but to eliminate it is another thing. I'll also include a primer on getting started on the glutenn free diet.

 

[beyondbabs23]

@trents Thank you so much for ALL of this info and really breaking it down for me. As I said, I’m sorry for my ignorance or any misinterpretation of tests ran, my doctor has explained none of this to me. They actually told me “You don’t have the typical symptoms for Celiac or IBD, we are just completing the protocol from the ER” and the Celiac test came back with antibodies. 

I did mean the Celiac was positive, but the CRP, ESR, and fecal calprotectin were negative which is what prompted them to do the EGD, since they originally told me it was just IBS, and the other testing ruled out IBD, along with a CT scan from the ER showing no inflammation. 

I am going to keep pushing to get in contact with my doctor, it is very frustrating to just receive a letter without any follow up or explanations. And Google is a scary thing, statins IgG without IgA can mean other terrible things liver diseases, etc. 

I would also like to speak with them regarding the NCGS and if I need to repeat the Celiac Panel or endoscopy in the future. 

Thank you again.  

[trents]

Keep in mind that if you decide to get any repeat testing done for celiac disease, whether it be blood antibody testing or endoscopy/biopsy, those tests are invalid if you are already on a gluten free diet. If you start a gluten free diet at some point as an experiment, you would need to go back to eating generous amounts of gluten (the amount in approximately 4-6 slices of bread) daily for several weeks leading up to the testing.

Many doctors are ignorant of the wide range of symptoms and associated medical conditions caused by celiac disease. There are over 200 of them. Yet, many physicians are stuck back on dated models of celiac symptomology composed of "classic symptoms" and give bum steers to their patients. You mention being evaluated for possible diverticular disease which would easily present symptoms that overlap with celiac disease.

[beyondbabs23]

@trents Thankfully I haven’t given up Gluten yet fully due to just having my biopsy and have been savoring it until I’m told to let it go, lol. 

 

Yeah very much so it seems the symptoms overlap, as you said from what I’ve been reading. I was having sigmoid pain and strange bowel movement issues. but the doctor told me all Celiacs have upper stomach pain, vomiting, and those are the only Hallmark symptoms, which I don’t believe in the slightest. 

 

I’ll keep pushing ! I did a food intolerance test 2 years ago so I knew I was intolerant to gluten and wheat, but never was tested for Celiac despite that. So NCGS is very possible, I’m not sure if that would elevate IgG like mine or not, but worth asking about ! 

[Wheatwacked]

It is not your ignorance but your doctors ignorance that is concerning,

38 minutes ago, trents said:

The Deamidated Gliadin Abs, IgG (aka, "DGP-IGG") at 41 is positive and that is in fact a celiac antibody blood test.

That’s why the moral of the story at this time is to evaluate how you feel when you eat 100% gluten-free for a couple of months. Until we have highly sensitive tests we can rely on to accurately diagnose gluten sensitivity, diagnosing will involve “building a case” by pulling together many pieces In an effort to justify why we can go against the result of a positive test, we ask “how positive is it’? It’s like getting a positive pregnancy test back and asking “how pregnant am I?”  Are You Confused About Your Celiac Disease Lab Results?

[beyondbabs23]

@Wheatwacked I am a little frustrated with my doctor and the way things have went. I also have been suffering with severe acid reflux and nausea since my EGD, called the office to let them know and haven’t even gotten a call back for that, let alone anything else. 

When I return home after this job assignment, I will look for a better Gastro to build a repor with, as of course this happens out of town.

Im also frustrated because I’m 26, this is all new to me. I feel like they are treating this as a  run of the mill diagnosis to them, when it isn’t to me! It just isn’t being handled with much grace

[trents]

Yes, by all means, get another doc. Believe me, the ignorance about celiac disease in the medical community sometimes amazes me! Some of them treat it as if it were the latest "fad" diagnosis. It is getting better but there are a lot older docs, even GI specialists out there, who are operating on very outdated notions concerning celiac disease.

[RMJ]

Do you have the actual biopsy results (pathology report) or just the statement that biopsies were negative? You may want to ask for the actual report to see if it shows any MILD signs of celiac disease.