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quietmorning01

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quietmorning01 Explorer
quietmorning01
Posted

I asked for the labs and the endoscopy report, and they very nicely gave them to me. Before I read them, I talked to the doc. He wants me to stop taking the Pepto twice a day to see if it's the Pepto or the lack of gluten in my diet that's making me feel better.

He took another blood test - told him I haven't eaten any gluten, that the test probably wouldn't come out. He said it would if it were positive. . .but then he said, "Well, if it's positive, it's definite, if it's negative, it's got about a forty percent chance of being wrong."

Sigh.

Ok.

So I asked him if the actual villia structure were damaged from the biopsi, as he said it was positive. . .and he said they didn't test for damage to the villia. . .

But there was inflammation.

At THIS point, I am now confused. I'm fairly bright, and I have an excellent memory - photographic. . . so THIS doc visit was completely different from the LAST visit. . . did he not READ the report, or did he just see the 'positive' and move on?

I'm supposed to stop the pepto bismal - but remain on the gluten free diet. . . to see if it was the pepto that was helping or the gluten free that was helping. Easy enough, I can do that. They took more blood. . .heh. . .I noticed that the lab work for the BLOOD is not here. Pft. . .just the fecal and the endoscopy.

So, I get home. . .and read the reports. Inflammation is there. . .but all the tests for every parasite known to man is negative. I did not have fat in my the fecal culture.

And the endoscopy. . .it says VERY CLEARLY that the Villia are normal. There is pitting in the wall, but the villia are fine.

Do doc's LIKE sending peeps into a heart attack or something?! Grrrr.

He thinks I might be ALLERGIC to gluten, but (now) both he and I seriously dought it's Celiac. Heh. . .any one want to teach some doc's how to COMMUNICATE?! **LAUGHING** This is so ironic, it hurts. **smirk**

I see him again in four weeks, by that time, the blood tests well be back - and I'll know for sure whether it was the Pepto or the diet that was helpful. He said he may refer me to an Allergist depending on what the tests come back as.

Ok. . .so. . .any thoughts?

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MaryJones2 Enthusiast
MaryJones2
Posted

I still think there is a very good chance that you are celiac. And at this point I think the real confirmation is your positive response to the diet combined with your tests. I am person who likes absolutes and it was difficult for me to overcome the negative bloodwork. But all the other tests (biopsy, pillcam, enterolab) and my response to the diet eventually convinced me.

quietmorning01 Explorer
quietmorning01
Posted
  • Author
I still think there is a very good chance that you are celiac. And at this point I think the real confirmation is your positive response to the diet combined with your tests. I am person who likes absolutes and it was difficult for me to overcome the negative bloodwork. But all the other tests (biopsy, pillcam, enterolab) and my response to the diet eventually convinced me.

Yeah, I told him that the difference is like night and day, and I would be very hard pressed to start eating gluten again - because wow. . .the pain is GONE. He argued and said that the gluten free diet is like the Atkins diet - and I'd only be able to eat rice. . .I laughed and said . . .and potatoes, and millet, and buckwheat. . .he blushed and said, "oh, yeah, I wasn't thinking about those other things. . ."

LOL. . .well. I'll wait to see how the next set of blood work comes out - but I haven't been eating glutten for about three weeks, now. . .so I seriously doubt they are going to show anything even if I am. I'm still hard pressed to go back to eating it, though. I just feel so much better. Too much better to just ignore it.

The one thing that I'm thinking is that if this is an allergy, and not the autoimmune disorder. .. then that's at least less threatening. But I would want an allergy test to make sure. I don't want to assume that I'm not Celiac and not be as careful - and then do massive damage if I am.

Hmph. . .nothing is ever so simple, eh?

ang1e0251 Contributor
ang1e0251
Posted

Sorry to complicate things but there is another possibility; gluten intolerance. There is no test you can take to prove it. All the celiac disease tests will show negative but you still get all the symptoms. Some even think it's a precursor to celiac disease.

If you have a strong dietary response to the gluten-free diet, I would never give that up. Your body is telling you what works for you. Listen to it and enjoy good health!

nasalady Contributor
nasalady
Posted
Yeah, I told him that the difference is like night and day, and I would be very hard pressed to start eating gluten again - because wow. . .the pain is GONE. He argued and said that the gluten free diet is like the Atkins diet - and I'd only be able to eat rice. . .I laughed and said . . .and potatoes, and millet, and buckwheat. . .he blushed and said, "oh, yeah, I wasn't thinking about those other things. . ."

LOL. . .well. I'll wait to see how the next set of blood work comes out - but I haven't been eating glutten for about three weeks, now. . .so I seriously doubt they are going to show anything even if I am. I'm still hard pressed to go back to eating it, though. I just feel so much better. Too much better to just ignore it.

The one thing that I'm thinking is that if this is an allergy, and not the autoimmune disorder. .. then that's at least less threatening. But I would want an allergy test to make sure. I don't want to assume that I'm not Celiac and not be as careful - and then do massive damage if I am.

Hmph. . .nothing is ever so simple, eh?

Especially being tested for celiac disease! LOL!

Two stories (mine and my granddaughter's):

I went gluten free in August of last year to see how I felt. The difference was AMAZING! I started eating gluten again because I didn't want to mess up the bloodwork and within two days felt like I'd been run over by a Mac truck. I broke out with sores all over my mouth, an itchy rash on my back and all sorts of gastric symptoms, plus headaches, vertigo, you name it I had it.

It took a few months to get everything done, but finally I had my bloodwork and biopsy results: both negative. The only indicator that I might *possibly* be pre-disposed to develop celiac disease was the fact that DNA testing revealed that I'm HLA DQ8.

Fortunately for me, I have an intelligent, well-informed gastroenterologist, who said that he expected all the tests to be negative because I was (and still am) on high dosages of immunosuppressants (prednisone and Imuran). He said that the drugs would suppress the autoantibodies and he still thinks I have celiac disease, because of my dietary response, my talent for developing autoimmune diseases, my DNA, and my family history of celiac disease. But this is the only "diagnosis" I'm going to get!

It doesn't really matter, because I've gone gluten free for good. I just could never go back to eating something that makes me so sick!

My granddaughter Carly was the classic "celiac baby". Failure to thrive, major gastro symptoms including reflux and diarrhea, she was just skin and bones at the age of three. But her bloodwork and first biopsy were both negative. Fortunately, her doctor decided to do a second biopsy several months later....that one was positive! She is a completely different kid now...healthy and growing like a weed on the gluten free diet.

So many of the people on this forum have similar stories....so don't worry too much about having positive bloodwork or biopsy. Just stick with the gluten free diet if it's working for you!

Good luck!

JoAnn

purple Community Regular
purple
Posted
Sorry to complicate things but there is another possibility; gluten intolerance. There is no test you can take to prove it. All the celiac disease tests will show negative but you still get all the symptoms. Some even think it's a precursor to celiac disease.

If you have a strong dietary response to the gluten-free diet, I would never give that up. Your body is telling you what works for you. Listen to it and enjoy good health!

I agree. From what I have read about all three, I believe my kids are intolerant which means they have to be treated as though they are celiac.

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