Unsure If Its True....

[lbv6684]

I am a bit frustrated. I had an endoscopy before blood work, mostly because I was having GERD like symptoms and have a strong family history for bad stomaches in general. Biopsy showed the likelyhood of celiac (blunted vili), I then had all of the blood work done before going gluten free. The results we negative for celiac, but I did have a very low B12 level. GI suggested I try to go gluten free and see how I feel, stressed the importance of doing it correctly etc, and get B12 once per month. I have been gluten-free for 7 weeks, I was feeling great for about 5 weeks, I think.... until I think I was glutened at a card party (my fault ate some dip that someone likely cross contaminate, few glasses of wine made me let my guard down!), I was in the bathroom all night and just miserable (no more explaination). For the last few days I have been exhausted, I am so fatigued I can hardly get up in the morning, and I just don't feel well. First of all, how do I know for sure that I have celiac? Is the biopsy alone reliable enough? Or does the fact that all blood work came back negative proof that I do not have this? And how long after being glutened can I expect to feel ill. I had symptoms for years, I just felt unwell for so long, and had gi symptoms that were never severe, but very bothersome and at times painful (every day!). I am second guessing my feeling of being well, did I talk myself into feeling well? I have not made my kitchen completely gluten free, my family still eats it, but I am very careful about cross contamination. I have my own butter, my own condiments etc, I keep the gluten-free breads in a seperate area, my gluten-free flours are seperated. Help!

[ravenwoodglass]

The biopsy is the gold standard and trumps the negative blood test. It would be nice if the blood tests were definate but there are false negatives. Keep up with the diet. You clearly reacted and it is not unusual for the effects to take what seems like a very long time to go away. I hope you are feeling better soon.

[Reba32]

what she said!

And unfortunately, I think the longer you're gluten free, the worse the reactions when you do accidently get glutened

All the more reason to be dilligent!

[mommida]

You can add your body's response to the diagnostic proof.

If we had a dime for every negative Celiac blood test!!?

[lbv6684]

Thanks for your replies! I think that I need to follow the KISS rule for now (keep it simple stupid!), and eat lean meats, fruits and vegies. Many years ago my grandfather died a very slow horrific death, had stomach cancer and esophageal cancer, and I am 100% convinced that he had celiac, he was so malnourished and ill most of his adult life, but in the early 70's celiac wasn't a common dx. My mother has very classical symptoms but refuses at her age to even be tested, so it only makes sense to me that I would have this. I am going to live on the theory that this is what the issue is with me and carry on!

[chasbari]

Negative blood test and positive biopsy here and there is no doubt that the symptoms get much stronger after gluten-free for a time. Your situation sounds classic, really. Also, many of us have discovered that when we get rid of the gluten we also find that dairy is problematic as well as other things... in my case soy(which is in everything.. even canned tuna!) and just about every alternative grain there is. I am doing much better now that I am eating pretty much what you have described. Oh, I read a while back here that some wineries use cross contaminated somethingorothers in the filtering process thus not guaranteeing that all wines (which should inherently be gluten-free) are in fact gluten-free so the wine might even have been problematic in your scenario.. can't say for sure, though.

[skigirlchar]

even those of us who have been found negative w/ the scope go through the same thing when we put gluten in our bodies.

at home my shelves are gluten-free/CF/SF

most of the foods i am allergic to i can cheat on and enjoy periodically outside of the home, but Soy & Wheat knock me back like i have been hit by a bus. (unfortunately i am allergic to a LOT of fruit, chickpeas, some nuts, & spices so it makes eating out difficult anyway.)

take it a day at a time

[sandsurfgirl]

Thanks for your replies! I think that I need to follow the KISS rule for now (keep it simple stupid!), and eat lean meats, fruits and vegies. Many years ago my grandfather died a very slow horrific death, had stomach cancer and esophageal cancer, and I am 100% convinced that he had celiac, he was so malnourished and ill most of his adult life, but in the early 70's celiac wasn't a common dx. My mother has very classical symptoms but refuses at her age to even be tested, so it only makes sense to me that I would have this. I am going to live on the theory that this is what the issue is with me and carry on!

Wow your GI doc knows what he's going and that's pretty rare sad to say. I think it's important for you to change your mindset about this. You said you are going to live on the "theory" that this is what it is. You have celiac and it's not a theory. Blunted villi are damaged villi due to the autoimmune response happening in your body.

The blood tests don't matter one bit. The endoscopy is positive. There are people who had positive blood tests and negative biopsy, negative to both but diagnosed based on dietary response. You are sick as a dog after CC at a party. Imagine your villi being totally destroyed not blunted if you went back on gluten.

I am thrilled to hear that your GI diagnosed you based on blunted villi. There are those on here who were told they did not have celiac because they were "only" blunted and then years later after ending up hospitalized or near death or a whole host of other nasty things, found out those blunted villi were a positive test and their GI screwed them royally.

You are lucky to have a good GI with some knowledge and to have a sound, firm diagnosis rather being one of the undiagnosed ones who just figured out from trying the diet that they have celiac. Don't look back or question it.