Help! In The Purgatory That Is Pre-Diagnosis

[torian]

My DH has been suffering over the past year with the following symptoms:

constipation

diarhea

bloating

cramping

grey floating stool

immediate digestive problems after eating

gas (both ends)

fatigue

Weight loss

Blood work showed that he is enemic, vitamin b (or c?) deficient and his hemoglobin levels are low. Slightly sugar intolerant. Thinks he is lactose intolerant, too.

Endoscope showed small evidence of esophageal varices. Negative on Celiac. Colonoscopy showed 1 small polyps (waiting on biopsy).

He has an ultrasound for his liver scheduled and another round of bloodwork to assess liver function was done. Waiting on results. Insisted on getting the tests done to assess blood for Celiac. Waiting on that, too.

He shows no sign of jaundice (eyes are white, skin not yellow, no spider veins under skin) and does not drink, and has not been exposed to needles or transfusions. He was overweight and ironically was actively trying to lose weight when these syptoms showed up.

Gastroenterologist has said possible IBS, but does not want to say anything until the liver tests come back.

Could this be Celiac? When he had to fast for his colonoscopy, he said he felt better than he had in months...making me think it is a gluten issue.

False negs for the endoscope are possible, yes?

I'm at a loss as to what is going on here...any insight from those who may have had similar symptoms and tests results would be appreciated

tori

[lilu]

My DH has the same symptoms as yours. When we got his bloodwork back, he was negative for antibodies, but his genetic test showed he is at a very high risk (DQ2/DQ2). Based on this information and his family history on both sides of autoimmune diseases and GI problems, we decided to try gluten-free anyway, with very positive results so far.

False negatives on biopsies are possible, because even the best biopsies take 6+ samples (teeny, tiny samples) in the duodenum (the small intestine has 3 parts, duodenum, jejunum and ileum). Your small intestine's surface area is the size of 1-2 full size tennis courts. To me, this is like sampling one corner of the tennis court and saying that those samples represent the entire tennis court!

It will be interesting to see what his bloodwork looks like. Since he has already had the blood drawn and the biopsy completed, you could just proceed with a gluten free diet trial period and see if his symptoms improve. Remember that for every one celiac, recent research indicates there may be 8 additional people with non-celiac gluten intolerance.

Hope all goes well for him.