Newbie - anxious and confused!

[Melmin]

Hi Everyone:

I'm new to celiac disease - no formal diagnosis yet but blood tests and symptoms are looking likely.  

I have been experiencing abdominal pain for several years now, occasionally happening after a fatty meal like fried food.  Pain in my upper right side at rib cage, followed by belching, bloating, nausea, abdominal cramping, and gas over a period of several hours, which then subsides until I eat again. Over the past year or so, this pain has escalated to happening frequently, and then in the past 6 months, almost daily.  About 6 months ago, I noticed that my stool had changed to a yellow color and is very foul smelling.  I have always had a tendency towards loose stool or diarrhea, especially after fatty meals.   

After talking with my primary care provider, I had an abdominal ultrasound and a HIDA scan - both essentially unremarkable for any problems, except for a slightly fatty liver.  Blood tests showed no liver or other issues, but confirmed my long-standing anemia (which has slightly improved post-hysterectomy) and a new potassium deficiency.  My gallbladder appears to be overactive (EF 85%) but has no stones, sludge, etc.  I've lost ~18 pounds in the past 10 months (I am overweight but not obese) because I have been feeling so sick when I eat it is just easier not to.  Anxiety is through the roof.

During the wait for testing, I took a genetic test for ancestry and health conditions which showed that I am positive for HLA-DQ2.  Those test results arrived right around the time of a call from my primary care provider's office, explaining that the HIDA scan was "normal" - and was I still having symptoms? (yes!)  I mentioned to the nurse that I have read that some physicians believe overactive gallbladders can cause similar symptoms as underactive or sludgy gallbladders, could she ask the PCP what were her thoughts on this, and also that I carry the DQ2 gene so should I be tested for celiac disease?  I received a call the next day with an order for celiac disease bloodwork. 

Bloodwork shows the following:  

Endomysial AB titer:  1:20  (Standard range <1:5)

Endomysial AB IGA:  Positive  (Standard range negative)

Celiac Disease Comprehensive Panel: 

            IGA: 70 (Range 47 - 310)   Interpretation - Serological evidence for celiac disease is present.

            TTG IGA AB: 15.8  (Standard range <15)

 

I don't have another appointment scheduled until three weeks from now, which was arranged prior to the bloodwork results.  I haven't had any response or call regarding the bloodwork yet.  Unfortunately, I had read just enough to be dangerous about celiac disease, and began a gluten-free diet the day I received the bloodwork results, not realizing that I should wait for further instructions and/or testing, including biopsy.  I have had partial resolution of abdominal pain, bloating, and gas on a gluten-free diet for the past 2.5 weeks.

In your experiences, have I really made a mistake by starting a gluten-free diet pre-further testing?  Thoughts on whether I will be expected to go back to eating gluten for an intestinal biopsy?

I'm reeling from this as I really expected that I had gallbladder disease and would need surgery but post recovery, no other changes.  This is a HUGE change in my diet and life that strikes at my very identity - I bake homemade bread, take classes in bread baking, make homemade pizzas in a wood-fired oven, and host pasta parties for 50 people.  I've been in tears for days thinking about the changes coming for me.   On the other hand, I have been reading about celiac disease and am seeing scary patterns in possible celiac disease illness in my siblings, who have unexplained anemia, thyroid disease, lactose intolerance, and liver disease; and my mother, who died from non-Hodgkin's lymphoma. 

Sorry this is so long - thanks to all of you who post on this forum - it is helpful and reassuring to see others who are coping well with this disease!

[trents]

With the Celiac Disease Comprehensive panel you give only the tTG-IGA. A comprehensive panel will have several tests designed to detect celiac disease. Did you leave out some? The IGA:70 line is not really a test for detecting celiac disease. It is just the total IGA count. That can be significant if it is low because it can give false negatives to the celiac panel tests that are IGA tests. This might help: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ A comprehensive celiac panel would include the tTG-IGA test as well as the tests under "Other Tests." The tTG-IGA test is considered to be the centerpiece of the celiac panel and many docs will order only that one (unfortunately, I might add).

Going gluten free one day prior to the antibody testing should not have a significant impact on results.

However, if you are also going for an endoscopy/biopsy for confirmation you will need to be eating an amount of gluten daily that is the equivalent of two slices of wheat bread for at least two weeks. Since your tTG-IGA is kind of equivocal I would certainly recommend you proceed with the endoscopy/biopsy.

Believe me, we understand how being diagnosed with celiac disease feels so threatening to one's lifestyle. We have all struggled (do struggle with that). But if you have celiac disease you want to get on top of it as soon as you can and begin the gluten free diet in earnest so that you don't damage other body systems.