Update

[boysmom]

Some of the Findings:

Esophagus: Esophagitis was found in the lower third of esophagus.

Stomach: Gastritis was found in the antrum. A biopsy was taken. The specimen was collected for CLO test. The body of the stomach, cardia, and fundus appeared to be normal.

Duodenum: The duodenal bulb appeared to be normal. Flattened folds were found. Biopsies obtained to exclude sprue.

He told my dh that he didn't see anything that led him to believe that it was celiac disease, but we'll wait for the biopsies to be sure. He seems to be leaning toward Wheat allergy, but I've also had reactions to things containing barley malt, so ... maybe food allergy testing will be the next step. From what I can find online it looks like wheat allergy carries more typical allergy symptoms like runny nose, watery eyes, through anaphylaxis, but I'm not finding reference to the same kinds of digestive symptoms that I've read about here or experienced myself through this. Maybe he's using 'wheat allergy' to give a name to non-celiac gluten sensitivity? I guess I'll find out at my follow up appointment mid-September. *sigh* more waiting... lol

Luanne

[nu-to-no-glu]

Ugh...I hate the waiting and suspense. The good news is you could start a gluten free diet and see how you feel now! hope the findings are conclusive for you.

[Roda]

I had similar findings in my esophagus and duodenum and the biopsy confirmed my diagnosis with the positive blood work. My doctor did not think the lining of the duodenum looked all that bad either but I have celiac. Those reports are based on visual findings.

[ravenwoodglass]

The flattened folds in the duodenum are a sign of celiac but not all doctors are aware of that. Even if the doctor says the tests were negative do try the diet. Since you are done with testing you can start today.

[boysmom]

Well the bad news is that I've been gluten-free, or as near as I've been able to figure out, since June 1. All this started as a desperate attempt to find a way to stop some miserable esophageal spasms that were not being relieved by Prilosec. Once my doctor had done the blood tests (negative, but I'd been eating very little gluten for a couple of years just because I'd realized it gave me heartburn to eat wheat but I still had a bowl of oatmeal virtually every morning until July) and I knew I had 6 weeks before I could see a Gi doc I decided to try the diet for a few days and see if I could get any results. I figured if I started to feel a little better I had plenty of time to go back to eating gluten before going on for more testing.

The good news is that the change was dramatic. Within 4 days of eating gluten-free the spasms dropped from several times a day to every 3-4 days. Besides that, the other symptoms that were relieved were amazing... joint aches that I've blamed on arthritis and getting older, mental alertness and ENERGY... WOW!! And my thinning hair has several layers of new growth sprouting. When I tried eating gluten again though, it made me sicker than ever, even after such a short time, so I gave up on trying it. Then the original Gi doc didn't work out because of insurance issues and I had to wait another few weeks to see one my insurance would cover.

I'm hopeful that if after 4+ months on Prilosec and 3 months off gluten (completely for at least 4 weeks, there were mistakes early on), if my visible tests still show as much inflammation and damage as they do that my villi will still show as well. I honestly don't think I could have gone on for 4 months with spasms several times a day, so I can't regret taking the chance. I figure if worst comes to worst I'll take the information about my response to the diet back to my doctor, and I want to do the genetic testing as well to have some idea of how it's linked in my family (or not) so I can let them know if testing is warranted for them. Hopefully between the two my doc, if not the Gi doc, will at least give it enough credence to help me from here on out.

[RollingAlong]

my spouse's biopsy report sounds somewhat similar. He had this done after a 3 month gluten challenge. Before that he had been gluten free for 2 months and very low gluten for 6 months before that.

The report said: duodenum had valuvulae with "diminished prominence" (ie, flatter than usual)

So that day, the GI said what he saw was "suggestive." The final report came back negative.

He went gluten-free that day and the anemia was gone in 3 weeks. He also has problems with casein, soy and eggs. His heartburn went away with the dairy.

He does have one of the celiac genes and one gluten intolerance gene. He is very careful on the diet and has been doing really well. He's just about to the one year mark.

That is so cool that you got results so quickly! I wonder what else will improve with a bit more time?