POSSIBLE CELIAC

[hoops2]

Approx 2 yrs ago began having pain in right abdominal area below rib cage. Pain sometimes begins after drinking water or eating something simple like a banana.  Other times large meal doesn't have much affect. Also have developed tingling in legs, particluarly at night, and sometimes hands.  Have had numerous imaging and blood tests including CT with and without contrast, ultrasounds, MRI, colonoscopy, EGD, upper GI w/small bowel follow thru, biliary duct scan, chest xrays, and numerous blood tests.  Nothing explanatory.  Celiac panel twice completely negative and not IGA deficient.  Symptoms suggestive of celiac include the pain which is a dull ache more noticeable when seated, the tingling in legs which is worse at night, dental enamel defects on front teeth, tiredness, and general malaise.  Serum levels of vitamins and minerals including B12,folate,calcium,iron, potassium, magnesium etc always normal. Normal stools, no diarrhea or constipation or unusual colors, no bloating. Liver panels always normal.
Hepatitis screens were neg.  Screened for heavy metals.  Gastric biopsy from EGD indicated mild gastritis.  Nexium and aciphex did nothing. Apparently no small intestine biopsies were done with EGD.  Don't know why not.  Two gastro drs have said no to celiac.  
  My reading reveals troubling diagnostic capabilities of blood tests i.e. antibodies may not have accurate neg predictive value.  Biopsies of ileum were neg for Crohn's.  Other possible i.e. hopeful explanations include:  presence of cervical disc bulge and bone spurs pressing on nerves could be causing tingling; complicated appendectomy 8 yrs ago( retro cecal with rupture-some peritonitis) possible adhesions or problems with surgical clips; was always told dental enamel was caused by tetracycline as child, tiredness and malaise from lack of sleep.
I'm scheduled for consult with GI at large teaching med univ hosp soon.  Have read where intestinal biopsy is gold standard for celiac diagnosis but can also not be definitive depending on degree of villi damage. I am 44 yo male and am beginning to get concerned I may have serious issue.  Have not tried gluten free diet b/c literature says not to change diet before diagnosis. Confused as to what course of action I should take.  Worried about hereditary aspects for my children. I suppose a small intestine biopsy is warranted. Any other possibilities or tests?

[Kevin Pho, MD]

You have had a very comprehensive evaluation of your symptoms.  You are correct in that the antibody markers are not 100% sensitive for the disease.  The gold standard will be multiple biopsies of the small bowel.  Although not definitive, it is the best test that is available.  If negative, celiac disease is unlikely.

Another consideration would be more specialized testing like a gastric emptying scan and 24-hr pH study with esophageal motility.  These tests can look for gastroparesis as well as motility disorders that may also lead to your symptoms.

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[AMA17]

I am going through celiac testing now -- all of my blood work came back positive and my sister has it and they're STILL telling me to go for an Endoscopy so they can check out my small intestines & see for sure (villi flattening)....

They're also making me keep eating gluten until the endo so that I don't affect it. I wasn't feeling well & suspected this was my problem (especially since my sis has it) and I just called up my Doc, had them to the blood test & set up a referral with a Gastro Doc for the endo... it's pretty easy, and this way you know for sure. You could also try going gluten free (watch out for hidden gluten such as modified food starch!) but you would have to be GF for at least 1-2 months to know for sure.

Good luck!

[AG23]

Even though you tested negative for celiac, you could have a gluten/wheat intollerance.  I know many people who tested negative and their symptoms improved after they went on a wheat/gluten free diet. Many people with food intollerances may have more than one so keep a food journal and your symtoms.  Also food intollerances may cause symptoms within 4 to 48 hours.

[SkylerMA]

>Have not tried gluten free diet b/c literature says not to change diet before diagnosis.

Literature sounds stupid! Why go through all these expensive, uncomfortable tests before trying the simplest, most definitive test?? Just stop eating gluten and see if your symptoms improve!!

I discovered my gluten allergy that way. I stop eating it: My symptoms go away. I eat it: they come back. (And by the way, I test negative for celiac disease antibodies.)

[Biskie2]

Are you taking any herbal products - which may also be included in some vitamins? Have you been tested for allergies - RAST tests? Have your doctors ruled out neuropathy?