Should I Keep Pursuing Celiac Diagnosis?

[ashley2452]

Hello! I'm new to the board.  My name is Ashley - I am 27.  I have been dealing with extreme fatigue, nausea, right upper quadrant pain, diarrhea, weakness, and just generally feeling unwell for the last 3+ months.   It's been pretty much constant, but the nausea and pain gets worse when I eat.  The pain comes in spurts, and especially when I eat fatty foods (which I have since cut out entirely).  The nausea has gone on for a while longer on and off, but I didn't attribute it to anything specific.   I've also had dry skin/eczema my whole life, and have patches on the back of both of my upper arms that get itchy and get small bumps (not really blistery) from time to time.  I have some scars there as I used to pick at them when I was a kid.  I also have had hypothryoidism since birth and have polycystic ovarian syndrome.  My thyroid has been especially out of whack lately as well - it was previously quite consistent but has jumped from too far hypo, increased dose, too far hyper, decreased back to old dose and still too hyper.

 

My primary care dr. suspected gallbladder disease based on the area of the pain.  I've had an abdominal ultrasound, CT scan, HIDA scan, EGD, and UGI test with barium.  The ultrasound came back normal, no gallstones.  CT scan came back normal except an umbilical hernia.  My HIDA scan came back hyperactive at 76%, indicating gallbladder disease.  After meeting with the surgeon, he put me on Prilosec 20mg, then 40mg, with no relief.  He then ordered an EGD.  The doctor that performed the EGD noted that "Evaluation of the esophagus was normal. Evaluation of the stomach including retroflexed views showed a rather large amount of retained food. Evaluation of the duodenal bulb and descending duodenum also showed retained food with flattened, whitish mucosa which was biopsied."

I was told that he suspected possible celiac due to the flattened duodenum, and possible yeast b/c of the white mucosa.  He took the biopsies (only 2 samples from the duodenum), and ordered the UGI contrast study to evaluate the function of my stomach since it was slow to empty.  The UGI came back normal as did the biopsies.  Here were the biopsy results:

 

"Final Pathological Diagnosis: Duodenum, site not otherwise specified, biopsy -- No diagnostic abnormality."

"Description: The specimen is received in formalin and labeled with the patient's name and "duodenal biopsies". The specimen consists of two tan-white irregular soft tissue fragments averaging 0.5 cm. The specimen is filtered and entirely submitted in one cassette. Miscroscopic examination is performed on one slide."

 

The doctor came back with: "Your biopsy is normal, there's nothing else I can think of that would cause the inflammation, flat duodenum and white mucosa".

 

I guess now I'm questioning if this damage to my duodenum could be somehow related to gluten or not and if I should be pursuing this further?  I'm glad the biopsies came back normal, but obviously my intestines aren't normal, so what the heck is causing it.  None of my doctors seem concerned in the slightest with this.  I'm a little disappointed that he only took 2 biopsies from the same area.  

 

My surgeon is suggesting moving forward with gallbladder surgery since my EGD came back normal and nothing else has helped.

 

I just don't know what to think anymore...

[nvsmom]

I don't know much about gall bladder problems but there are a few around here who do (its not uncommon in celiac disease). Hopefully they'll add their $0.02.  

 

I do know about celiac disease testing, and I think you should be tested further for celiac disease if you are able.  You are correct about the 2 biopsy samples not being enough.  When biopsying the intestines, 6 samples or more is ideal because celiac disease damage is often patchy.  The surface area of the small intestine is about the same as a tennis court - that's a lot of space to test!  No wonder the endoscopic biopsy only catches about 80% of all celiacs.

 

You might want to do the blood tests to cover more of your bases.  Below are the tests you want.  Make sure you are still eating gluten in the 2-3 months prior to testing.

 

• tTG IgA and tTG IgG (tissue transglutaminase)
• DGP IgA and DGP IgG (deaminated gliadin peptides)
• EMA IgA (endomysial antibodies)
• total serum IgA - a control test
• AGA IgA and AGA IgG (anti-gliadin antobosies) - older and less reliable tests which were replace by the DGP tests

 

When testing is done, if it is negative (it happens to some celiacs), try the gluten-free diet for 3-6 months. If you feel better after 6 months you'll know that you have celiac disease or non-celiac gluten sensitivity (NCGS) and need to be gluten-free.

 

Best wishes.  I hope you find more answers.  And welcome to the board.  

[MitziG]

Agreed, not enough samples, but all you are likely to get. Do the blood tests, INSIST on a full panel, then try gluten-free for awhile. (however this means eliminating all trace amounts, which you can find info on here about) Tiny exposure can still cause you trouble. The bumps on your arms are generally a reaction to dairy- dermatologists even refer to them as "milk bumps." If gluten free doesn't help you, dairy may be the culprit.

[MitziG]

Forgot to say, hold onto your gallbladder a bit longer. Celiac can cause the gallbladder to malfunction. I had mine out after the HIDA scan said it was only functioning at 10%. However, this "attack" happened two days after a bad glutening. When they removed the gallbladder it was pink and healthy, showed mild inflammation was all. (at which point, why the heck didn't they leave it alone I wonder?!) Anyway, there may be other things that are messing with the gallbladder, and I discovered life without one just starts a road to a whole new set of problems worse than the original.