Negative biopsy, but still suspect celiac disease

[Jenny]

Hi Celiac Community, 

 

In the summer of 2014, my daughter was diagnosed with celiac disease.Though she was IgA deficient, the process to get her diagnosed was quick and easy due to an amazing team of doctors. Since the diagnosis, my husband has suspected that he too might have celiac; however, his experience trying to get an accurate diagnosis has left us frustrated and confused. He has so many symptoms associated with celiac (extreme fatigue, unexplained iron deficient anemia, iritus of the eye (autoimmune), brain fog, chronic stomach pains, loose stool (7-10 a day), suspected dermatitis herpetiformus--just to name a few).  His blood work and biopsies came back negative for celiac and everything else that was tested.  Celiac makes sense given his symptoms, but I feel delusional still suspecting it.  What I would like to know is this:  Have sufficient tests and biopsies been performed to rule out celiac?  If not, what should be done next?  Thanks for your time!

 

Tests:

• TISS TRANSGLUTAM AB: 
  • range 0-19
  • results 4
  • negative for celiac
• IMMUNOGLOB A,SERUM
  • range 68-378
  • results 121

Doctors:

• Dermatologist experience:  My husband has had a chronic skin rash for over five years.  Although we suspected DH and sharing that there was a strong family history of celiac, the doctor would not do a biopsy.  Admitted to not knowing what the rash was, and wrote out a script for antibiotics, which was never filled by my husband.  After seeing the dermatologist, my husband went gluten-free for two weeks and the rash went away.  
• GI specialist:  Explained symptoms to specialist.  Nothing found from colonoscopy/endoscopy procedure.  Doctor suggested going lactose free.

Biopsies:

Clinical History: Fatigue, anemia, diarrhea. Unexplained iron deficiency anemia. Clinically significant diarrhea of unexplained origin.

Clinical Impression:  Normal mucosa in duodenum. Biopsy. Erythema in antrum compatible with gastritis, biopsy. Esophageal hiatal hernia. Ring in gastroesophageal junction. Biopsy. Normal mucosa in terminal ileum, biopsy. Normal mucosa in whole colon, biospy. Congenstion in distal rectrum, biospy. Diverticulosis of sigmoid colon.

Final Diagnosis:

A. Biopsy in Terminal Ileum: Histologically unremarkable ileal mucosa. No active of chronic ileitus.

B. Biopsy in Whole Colon: Histologically unremarkable colonic mucosa. No active, chronic or microscopic colitis.

C. Biopsy in Rectum: Mild non-specific mucosal congestion-edema otherwise, unremarkable rectal mucosa. No active, chronic or microscopic proctitis.

D. Biopsy in second part of duodenum: Histologically unremarkable duodenal mucosa. No evidence of celiac sprue or parasites.

E. Biopsy in the stomach antrum: Histologically unremarkable oxyntic and oxyntoantral type mucosa. Silver stain negative for helicobacter organisms.

F. Biopsy in gastroesophageal junction: reflux changes in squamocolumnar mucosa. No barrett mucosa/intestinal metaplasia.

[cyclinglady]

I am not a doctor, but I can give you my two cents.

First, he did not have the complete celiac blood panel.  Why is this important?  Because not everyone tests positive on the TTG tests.  I did not.  I only tested positive on the DGP IgA.  Even when I was recently tested because of an accidental glutening, I still had a negative TTG result and only a positive DGP Iga.  Next, if he has DH, that can cause negative blood test results.  A skin biopsy might be your best bet.  Look through the DH section of the forum as these folks test out differently and getting a proper biopsy is tricky.  I have no DH experience at all.   Finally, he only had a few biospies taken in the small intestine.  The small intestinal wall is vast.  Stretched out it is the size of a tennis court (google it!) and it is easy to miss damaged areas.  Doctors usually take four to six in the small intestine!  

Now here is the kicker.  Was he consuming gluten daily  for up to 8 to 12 weeks prior to any blood tests?  I am having a hard time figuring out the time sequence of all your testing.  

Going lactose free will not affect any celiac testing and may relieve symptoms.  

Once celiac disease is ruled out, then you can have him go gluten free.  He can go gluten free now and assume that he has Non-celiac Gluten Intolerance.  My husband went gluten free some 14 years ago.  Long before I was diagnosed.  His GP and my allergist recommended that he give up gluten.  It worked.  All his symptoms went away.  Does he have celiac disease?  Who knows?  He does know that he will not do a gluten challenge just to get a diagnosis.  

More to think about, research and advocate.  

[Jenny]

Thanks, Cycling Lady!  My husband has felt awful for a long time.  Whenever he eats gluten, he has to fast 1.5 days until he can handle food again.  The blood work is a year old and he was eating a gluten heavy diet between fasts.  Since June, he has drastically reduced the amount of gluten he has consumed--two gluten based meals/week. His biopsy was performed two weeks ago. Like your husband, he was not willing to put his body through a full gluten challenge.  I guess he thought that years of being a glutton on gluten was enough to get a positive biopsy.  In the two weeks he has been gluten-free, he has felt much better and the suspected DH is almost entirely gone.