Mixed test results - a mystery

[bennie21]

I've had diarrhea (usually watery and frequent) every day for almost 3 months, with occasional nausea, gas, and bloating.  No fever, no blood stool, no vomiting, no weight loss.  All stool cultures were negative, and a colonoscopy ruled out Crohn's  and microscopic colitis and all other lower GI conditions.   I got 4 labs for Celiac with mixed results:

Component	Your Value	Standard Range
Gliadin AB, IgG	2	<20

Gliadin AB, IgA                                  19                                           <20

Tissue Transglutaminase AB, IgA   4                                                 <4

Tissue Transglutaminase AB, IgG   2                                             <6

My GI doctor said the weak positive for tTG-IgA and the borderline Gliadin AB, IgA were interesting, in light of my symptoms, which are very common for Celiac.  What makes it a mystery is that I am on a juicing diet with veggies and fruit, and if I buy processed food, I buy gluten free items.  I avoid bread and cereal.  I cheat a little sometimes with a candy bar or similar junk, but have the same symptoms every day even when I don't ingest that stuff.  I also eat chicken from time to time.  I drink K-cups for coffee, but Keurig claims all their K-cups contain gluten-free ingredients.  I use raw sugar, soy milk, and soy creamer, all of which are gluten-free.  I use protein powder, also claimed to be gluten-free by the manufacturer.    

My GI doctor did recommend an endoscopy, but I wanted to get some feedback from anyone who may have had a similar experience with mixed lab results and Celiac type symptoms.  I have a few questions:

1.  Can one have mild Celiac disease and accompanying symptoms while on a gluten-free diet?

2.  Are there any other diagnostic blood tests besides the four I already had?  

3.  Is it advisable to get the endoscopy for a final diagnosis (or ruling out) and/or to check for other upper GI conditions that have Celiac symptoms?  I had an endoscopy 2 years ago and it revealed mild esophagitis.  I have occasional heartburn, but not that serious.

Bennie

 

 

[cyclinglady]

Ugh!  No mystery at all.  Why would your doctor even test you if you have been gluten free?  All the celiac tests require you to be consuming gluten daily (slice of bread) for a period of 8 to 12 weeks.  By your going gluten free, you antibodies have most likely been reduced.  Check out the University of Chicago's celiac website for testing requirments.  They are a leading celiac disease research facility.  

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You can do a gluten challenge and get tested in three months or proceed with the endoscopy but eat gluten for just four weeks.  Your GI should take  four to six biopsy samples (that was not done during your last endoscopy) to rule out or make a celiac disease diagnosis.  I would consider getting another GI who is celiac savvy.  

Oh, it looks like your doctor failed to do an IGA defciency test, but I bet (not a doctor)  since you had some borderline IGA results that you are NOT igA deficient.  That means the IGA celiac tests work for you.  

[squirmingitch]

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[bennie21]

On 12/8/2015 at 2:03 PM, cyclinglady said:

Ugh!  No mystery at all.  Why would your doctor even test you if you have been gluten free?  All the celiac tests require you to be consuming gluten daily (slice of bread) for a period of 8 to 12 weeks.  By your going gluten free, you antibodies have most likely been reduced.  Check out the University of Chicago's celiac website for testing requirments.  They are a leading celiac disease research facility.  

Open Original Shared Link

You can do a gluten challenge and get tested in three months or proceed with the endoscopy but eat gluten for just four weeks.  Your GI should take  four to six biopsy samples (that was not done during your last endoscopy) to rule out or make a celiac disease diagnosis.  I would consider getting another GI who is celiac savvy.  

Oh, it looks like your doctor failed to do an IGA defciency test, but I bet (not a doctor)  since you had some borderline IGA results that you are NOT igA deficient.  That means the IGA celiac tests work for you.  

Thanks very much for the information.

A few developments since my initial post of December 8:

1.  After having some leg weakness and numbness and fatigue, I had my B-12 checked.  It has dropped about 41% since the last test, but is not in the deficient range.  Of course, the values for  B-12 deficiency are sometimes disputed.  If I lived in Europe instead of the USA, I would be getting B-12 injections. Nevertheless, I started B-12 supplementation with a daily pill (1,000 mcg) on December 16, per doctor orders.   The substantial drop in B-12 could indicate malabsorption due to celiac, according to my GI doc.  After being on the supplement for about 3 weeks, I have noticed improvement, but still feel quite weak at times.

2. I had an abdominal ultrasound in late December.  It was normal.

3.  I started eating gluten in mid-December to prepare for the next and hopefully FINAL test -- an EGD-Upper Endoscopy.  The doctor will take multiple biopsies for the celiac check.

Even though I have persistent nausea, I have gained a dozen pounds since I began having symptoms about 3 1/2 months ago.  Part of that weight gain is due to lack of exercise, since I have not felt well enough to resume my exercise in the gym.  My lower GI issues have settled down the past week or so.

I have had four CBCs done since early October, and they show slight decreases in RBC, hematocrit, and MPV over that 3-month period.   I have not been diagnosed with anemia, because the values for those three labs are so close to the bottom of normal value ranges.  But the trend downward is curious. 

I expect that the EGD-Upper Endoscopy will provide an answer and diagnosis.  It's been a long time coming.

 

 

 

 

 

[cyclinglady]

Thanks for keeping us posted!  I sincerely hope you find an answer to your symptoms.  

 

[squirmingitch]

Ditto that.