Test Results

[Jenn2005]

I posted a couple of weeks ago that my husband had a biopsy positive for celiac and negative blood work so the doctors decided he didn't have celiac and wanted him to do a gluten challange and redo the endoscopy. He had been on the gluten free diet for 7 weeks and they had him eat a regular diet for 5 days prior to the biopsy. Well suprise suprise I emailed the nurse today and asked for the results since I still hadn't heard anything and she emailed me back that the biopsy was negative this time so he says he doesn't have celiac they need to look at other things and wants to treat him with a medicine called Questran which is for high cholestrol and diarrhea. The only problem with this is, of all the symptoms Shane does have, high cholestrol and diarrhea aren't among them. He had diarrhea before going gluten-free and during the challenge but, since he has resumed the gluten-free diet it has resolved itself. He does however still pass pieces of undigested food. (sorry to be gross) We are about to pull our hair out because he is obviously doing better on the gluten free diet - I told the doctor that he was going to stay on the diet regardless of his dx because it was helping the way he feels and thats the most important thing. He is still very tired,nauseous, & bloated but we know that will all take time to resolve. I ordered him the test kit from Enterolabs and I'm hoping to get some clue with that. Does anyone think that its possible that the damage seen on the first biopsy could have healed by the second biopsy which would mean that the diet was working. The date of the first biopsy was July 15th and the repeat biopsy was on October 10th. The doctors missed the dx on the first biopsy and it was a diiferent dr that found it so the diet wasn't started right away because we didn't know they found anything, but because he was so sick his diet since June had only been consisting of white rice and canned pears and peaches and an occasional small piece of french bread. I know any amount of gluten is tooooo much but could going from a regular diet to what I mentioned affect the bloodwork? Thanks for any comments or help.

Jennifer

[Rachel--24]

Yes...I think its very obvious that your husband has Celiac and his doctors are incredibly ignorant.

He was doing better on the diet...correct? He was healing.

It takes a long time for gluten to redo that same damage that was seen the first time. His gluten challenge was 5 days and his doctors are now saying he doesnt have Celiac.

This just seems like a no-brainer to me. His symptoms go away when he's off gluten and they come back when he's back on it. His first biopsy was positive and after being on the diet his biopsy was negative. All this proves is that the diet is working!

I dont know why the doctors would redo the biopsy and then say he doesnt have it based on positive results from the diet???

He will not be 100% after 7 weeks...it will take much longer and I doubt his intestines are completely healed...just healed enough to not show up in the biopsy.

[Jenn2005]

Thanks for the reply. I think its obvious also that the reason the biopsy is negative now is because he followed the diet so carefully and it was working. On the first biopsy he also had in addition to the compatible with celiac dx something called Mild Foveolar Metaplasia which indicates inflamation - this was gone on the second biopsy also. I am anxious for the results from the Enterolabs to get back and maybe this will give us some answers on paper, the doctors haven't even acknowledged the fact that he isn't digesting his food and that he's passing pieces of food in his stool. I'm not a doctor but I know this is not a normal thing.

Jennifer

[Rachel--24]

the doctors haven't even acknowledged the fact that he isn't digesting his food and that he's passing pieces of food in his stool.  I'm not a doctor but I know this is not a normal thing. 

<{POST_SNAPBACK}>

No...its not as normal thing. I was having the same problems. Everything was coming out undigested and I lost 25 lbs. My doctor told me that its perfectly normal to have undigested food coming out.

I think he needs to go back to med school if he thinks that losing 25 lbs. despite eating normally and having it all come out undigested is perfectly normal. I never had it happen before I got sick and it doesnt happen now that I'm on the diet.

[tarnalberry]

Well, if they don't believe the food in the stool thing, I suppose he could bring in a sample next time? ;-)

I get that after getting glutened, and it lasts, in varying degrees, for a week or two.

[Jenn2005]

The doctor called today and he is is ordering a D-Xylose test to check for malabsorbtion. I guess he finally listened to me yesterday about the food in the poop issue. He also is ordering a gastric emptying test because he is sure that he does not have a problem with gluten. I'm just glad he's doing the D-Xylose test that should show something.

Jennifer