Not sure what my results mean...

[Cinderella915]

I went to the GI because for at least six months (that I’ve noticed) I’ve had digestive issues mainly manifesting in diarrhea and gas (every day, multiple times, without rhyme or reason). I figured it was IBS or something. He had me do a blood test and we scheduled a colonoscopy for next week. Yesterday, I got a call from the nurse with my lab results. She said there’s a possibility of having celiac (which I would have never guessed in a million years) and that we also need to do an EGD biopsy during the procedure.   

I can’t post the results because of the file size, but here are the major outliers. Is someone able to interpret what it means and give me an idea on my likelihood of being diagnosed? All I know is that I have a mild elevation of inflammation and an indicator of celiac, according to the nurse. The doctor also said I’m IgA deficient, but I can’t quite pin down what that means and how it affects the diagnosis. 

My procedure is next Tuesday so I’m basically wanting to know what level of anxiety and last meals I should be having haha. 

 

RDW - 17.0 (normal range of 12.3-15.4)

Immunoglobulin A - 85 (normal range of 87-352)

CRP - 5.6 (normal range of 0-4.9)

tTG IgA and tTG IgG both <2

 

Thanks!

[squirmingitch]

IgA deficient means you will test false negative on IgA tests so those are out as far as indicating whether or not you have celiac. That is a control test. 

As far as this, we would need the results & reference ranges spelled out. Different labs have different reference ranges.

Keep eating gluten every single day until the endoscopic biopsies are done. 

[cyclinglady]

I think ( I am not a doctor), but he is checking you because you might have anemia (high red blood cells).  Anemia is very common with celiac disease, especially B-12 which can be due to malabsorption.  

Your  celiac results are normal and you are not Immunoglobulin A (IgA) deficient  enough to impact any celiac (IgA) test versions.  (In celiac disease, IgA testing is a control test).  You could be like me and never get a positive on the TTG tests.  I test positive to only the DGP IgA.

Your GI is doing the right thing.  Get both scopes,  that is what happened to me and I did not have GI issues when I was diagnosed, just anemia.  Believe me, I was shocked.  I went in for a routine colonoscopy because “all my friends were getting them”.  ?. I knew exactly what being a celiac meant.  My hubby had been gluten free for 12 years already.  What were the odds that I would have it?  

Eat.  I bought every goodie I could.  Because I had work constraints, I waited seven weeks for my endoscopy.  I ate a loaf of sourdough bread a day.  I ate every favorite cookie (not entire bags, but I gave those opened packages away to friends and family.  One clue?  A normal colonoscopy prep was not enough.  Food was delayed getting through because my GI tract was so damaged.  

Yep, I definitely had celiac disease!  

 

[Cinderella915]

Finally figured out how to post my results: 

3 hours ago, cyclinglady said:

I think ( I am not a doctor), but he is checking you because you might have anemia (high red blood cells).  Anemia is very common with celiac disease, especially B-12 which can be due to malabsorption.  

Your  celiac results are normal and you are not Immunoglobulin A (IgA) deficient  enough to impact any celiac (IgA) test versions.  (In celiac disease, IgA testing is a control test).  You could be like me and never get a positive on the TTG tests.  I test positive to only the DGP IgA.

Your GI is doing the right thing.  Get both scopes,  that is what happened to me and I did not have GI issues when I was diagnosed, just anemia.  Believe me, I was shocked.  I went in for a routine colonoscopy because “all my friends were getting them”.  ?. I knew exactly what being a celiac meant.  My hubby had been gluten free for 12 years already.  What were the odds that I would have it?  

Eat.  I bought every goodie I could.  Because I had work constraints, I waited seven weeks for my endoscopy.  I ate a loaf of sourdough bread a day.  I ate every favorite cookie (not entire bags, but I gave those opened packages away to friends and family.  One clue?  A normal colonoscopy prep was not enough.  Food was delayed getting through because my GI tract was so damaged.  

Yep, I definitely had celiac disease!  

 

Thanks for the info! This is just out of left field for me and obviously (like everyone who gets diagnosed or is close to it) overwhelming to think about. I just hate that I have to wait five more days... the waiting is the hard part. 

3 hours ago, squirmingitch said:

IgA deficient means you will test false negative on IgA tests so those are out as far as indicating whether or not you have celiac. That is a control test. 

As far as this, we would need the results & reference ranges spelled out. Different labs have different reference ranges.

Keep eating gluten every single day until the endoscopic biopsies are done. 

Just posted those below. Thanks!

[cyclinglady]

You might not have celiac disease, but a few of your test results indicate that something could be going on.  It is good that you are getting checked.  

[Cinderella915]

I had some further notes on my record after my double endoscopy yesterday (waiting on the biopsies), and I'm curious what they mean. 

Abdominal pain, epigastric (c,e)

First degree hemorrhoids

Change in bowel habits (c)

Diarrhea, unspecified (c)

Immunoglobulin A deficiency

What do the letters after the diagnoses mean? I've torn google apart and can't figure it out! TIA!

 

[cyclinglady]

Looks like doctor notes, but who knows as I am not a doctor.   Celiac disease and epigastric issues?    Maybe for insurance reporting?  

Like anything there are good and bad benefits to a patient portal.  Call the doctor.  

[frieze]

yup, call doc.  if TWO nurses can't help you with this...got to go to the source. lol

[Cinderella915]

I got my biopsy results back. They say it shows mild GERD and mild peptic duodenitis, but no H. Pylori (which seems to be the main cause of peptic duodenitis?) and no celiac. They took six biopsies in my duodenum. However, I never got the full celiac panel, just the TTGs and overall IgA it looks like. Is it worth asking for the DgP bloodwork or getting a second opinion on all of this, or am I wasting time? It looks like some people can still slip through with false negatives if they're IgA negative and get biopsied in good spots. I just find it hard to justify why I'm having all of these symptoms (anemia, gas, diarrhea, headaches, lethargy) without some underlying cause, especially if I'm IgA deficient. Does that make sense? Am I crazy?

[tessa25]

You can always try the gluten free diet for a few months to see if you feel better.

[cyclinglady]

Like I stated before, you might not have celiac disease.  Six biopsies and your TTG tests were negative.  You can trial the diet like Tessa suggested.  You might have Non-Celiac Gluten Sensitivity.  Did your doctor suggest anything?  Have you had a discussion or is this direct from the patient portal?  

I do not think you are IgA deficient enough to impact celiac testing since you were just barely out of range.  Your IgA result was enough  in order to insure that any celiac IgA tests would be valid.  For celiac testing the Immunoglobulin A (IgA) would need to be close to zero.  

My niece tested negative to all celiac tests (biopsies and blood tests, full panel).     I thought for sure she had celiac disease.  Her 4th GI ordered a pill camera.  She had some pretty severe damage from Crohn’s — out of reach of both scopes.  She also did not display typical Crohn’s systems either.  

I am not saying you have Crohn’s, but something is wrong.  The gluten-free diet is definitely worth trying. It can not hurt.    If you do not improve, ask for more testing.  Talk to your doctor.  If you are not satisfied, get a second opinion.  

I wish you well.  

[Cinderella915]

That's really helpful - thank you!

I'm waiting to hear back on a message I left re: a follow-up appointment with the GI. He never reached out or said anything about any kind of diagnosis or treatment plan beyond mailing me my biopsy results, so I'm going to initiate it because this is pretty miserable and not sustainable. 

That's interesting about the Crohn's...he initially said he wasn't concerned about that, but who knows. At this point I just want any kind of answer! 

Thanks again.