5 replies to this topic

[hokyma]

My husband had an scope done today (blood last week, but don't have results yet-urgh) and I'm wondering if the doc would/should have seen eroded villi during the exam today or is the only way to detect damage after biopsy sample(s) are completed? Just feeling kind of anxious to know more either way. I'm somehow thinking Doc should have visually noticed changes and feeling kind of discouraged he did not, but I have no clue.

I guess all the anticipation is killing me -I've been researching and learning for several months, come to grips with having to change over my kitchen and ways of eating for the whole family (both kids and myself are at minimum wheat sensitive/intolerant) and I think just looking for the green light to tell me "GO NOW".

Any thoughts? Thanks in advance...

[kareng]

Sometimes, if its really bad, they will see something. The problem is the villi that is damaged is very tiny so looking at little bits under a microscope is the best way to tell. Who would think the lack of something so teeny weeny hair-like could make us feel so bad!

[breiec]

My husband had an scope done today (blood last week, but don't have results yet-urgh) and I'm wondering if the doc would/should have seen eroded villi during the exam today or is the only way to detect damage after biopsy sample(s) are completed?  Just feeling kind of anxious to know more either way.  I'm somehow thinking Doc should have visually noticed changes and feeling kind of discouraged he did not, but I have no clue.

I guess all the anticipation is killing me -I've been researching and learning for several months, come to grips with having to change over my kitchen and ways of eating for the whole family (both kids and myself are at minimum wheat sensitive/intolerant) and I think just looking for the green light to tell me "GO NOW".

Any thoughts?  Thanks in advance...

I had a TTG of > 100 on a scale of 10 positive. After the Endoscopy Dr told my wife that he did not believe I had Celiac cause he did not see damage indicating Celiac. He only took 3 biopsys and all showed moderate villous blunting confirming Celiac disease. Dr did not see the damage in my case so I would not get discouraged.

[Hala]

I think it depends on the extent of the damage.

My intestines were so damaged that the doctor was exclaiming during the endoscopy "classic coeliac duodenum" and afterwards he showed me a picture of my completely eroded intestines. They were so wrecked that there were no villi at all to be seen. Straight after the endoscopy he told me I definitely had coeliac disease and that I should go gluten-free immediately. The biopsy results later confirmed the extreme extent of the destruction. I was so shocked by how severe the damage was!

But I think for a lot of people the damage isn't as obvious or is more patchy so they have to wait for a biopsy before any diagnosis can be made.

[hokyma]

Thank you everyone, you have given me hope, I was fearful that nothing visual would just say "negative"....though I'm finding it hard to be patient. Was at the Doc with my son today and asking for a copy of hubby blood labs, but alas, doc said he would have to talk to my hubby first...then would mail. ACK!!!!!! My fingers are crossed we get a confirming diagnosis and don't have to struggle for years without knowing.

Coincidentally, my toaster zapped out this morning, so I'm hoping this is a sign I can make drastic changes. Don't think hubby/kids will go along with the necessary changes unless the doc says it's necessary. I'm convinced, but it's not enough for them...even when I point out how badly "the guys" feel after a sandwich vs chicken breast and vegtables.

[archaeo in FL]

To echo others here, my doc told me it all looked normal as I came to afterwards, and told me to continue to eat a normal diet. Two weeks later, a nurse called and told me that I have Celiac disease and sent a poor-quality photocopy of a short pamphlet about how to eat gluten-free. When I asked if I should schedule a follow-up exam, I was told that the doctor was off - for the entire summer - and that they'd call me when she returned.

All of which is to say, the time between now and when you get results may seem slow, but if you suspect Celiac there's no reason not to start the "diet" now, since all tests are done. Worst case they'll come back negative and he'll be a few days or a week or so into the diet change and will know if he feels better, indicating possible sensitivity.