Endoscopy Results

[Terch]

That's actually a play on a Seinfeld quote (prognosis negative) but it's true my biopsy results came back negative. He is now going to test me for small bowel Crohns. I read up on Crohns and don't have any of the symptoms except maybe the abdominal pain and diarrhea! I am positive I don't have Crohns but maybe something else will turn up in the meantime.

I must say I was rather dissapointed that my results came back negative, my GI was surprised by my reaction and he said and I quote " you don't want to have celiacs that disease is a real pain" hmmm

So on Wednesday I go for my small bowel follow through test and lots of bloodwork, I will see what that uncovers. I am still gluten free and it will be 5 weeks on Sunday and so far no improvement that I can see.

Oh one more thing, my GI also said that maybe my abdominal pain is from the Nexium!! He wants me to stay on it though.

Now for my enterolab question... Can they test for celiacs disease or do they test for gluten sensitivity? Is the testing that refined or not?

Terch

[JenKuz]

  Terch said:

Now for my enterolab question... Can they test for celiacs disease or do they test for gluten sensitivity? Is the testing that refined or not?

Terch

Others around here will be able to say more about how Enterolab influenced their diagnosis, but what I do know is that they test for both gluten sensitivity and celiacs. Gluten sensitivity is measured by antibodies to gliadin, one of the components of gluten. Autoimmune celiac sprue is measured by testing for antibodies to tissue transglutaminase, which is the "self-protein" that the body is spurred to attack when wheat is ingested. Both can cause similar gastrointestinal symptoms, but the latters will most likely cause worse small bowel villi damage.

The antibody tests done by Enterolab are identical to the blood tests *except* that they test stool instead of blood. Because these are IgA tests, it makes more sense to test stool that blood (IgA is manufactured in the intestines). So the tests are more senstive than the blood tests, with comparable specificity. That makes them better. They also do the genetic testing, which is pretty reliable in general, and if I understand right Enterolab tests for an additional gene, identified by Dr. Fine, that other labs aren't testing for yet. The genes are helpful, because if you don't have any of them, you can rule out celiac a bit more confidently. If you do have them, however, then a gluten-free diet is worth considering, even if the primary problem is something else that is being exacerbated by gluten. I'm pretty sure that's what's going on in my case, though I don't have an official diagnosis of anything yet.

I sympathise with being disappointed that it "isn't" celiac. I was hoping my blood tests would come back positive, too; Celiac may be a pain, but at least it's a definitive answer and within one's own control. That's far better than something like Crohn's, which is unpredictable, and over which you have very little control. Personally, I'm really afraid of being diagnosed with that. I'm hoping against hope that my positive anti-gliadin will be enough to explain my problems, and eventually I'll get better on a gluten-free diet.

[AndreaB]

As far as I understand, Enterolab can't tell you you have Celiac. They tell you you have active gluten sensitivity. If you have 2 celiac genes than it would seem that it is definately celiac. Gluten Sensitivity/Intolerance and Celiac are pretty much the same thing. Gluten free for life.

[CarlaB]

I think the main problem with the conventional testing is that it misses those who are non-celiac gluten intolerant. I have two gluten intolerant genes, an active gluten sensitivity and and autoimmune response, but all my conventional tests came back negative. I went gluten-free again, I had been gluten-free but did a six week challenge for my biopsy, after my biopsy, started healing and gaining the weight I had lost, then after three months got tested by Enterolab. I am very sensitive to gluten and casein (milk). I had classic celiac symptoms, which cleared up by going gluten-free.

Enterolab does not differentiate between gluten sensitivity and celiac, but both require gluten-free for life, and they can tell you if you are having an autoimmune reaction and which genes you have.

[JenKuz]

  AndreaB said:

As far as I understand, Enterolab can't tell you you have Celiac. They tell you you have active gluten sensitivity. If you have 2 celiac genes than it would seem that it is definately celiac. Gluten Sensitivity/Intolerance and Celiac are pretty much the same thing. Gluten free for life.

Yeah, I understand why he does that...he's trying to redefine the disease conditions. But it seems a bit like splitting hairs, because he says that celiac itself can only be diagnosed through biopsy, and he advocates foregoing biopsy altogether. So he can't diagnose it, but he will diagnose every symptom and marker for it outside the biopsy, so in lay terms, it seems to me, if you have all those, it really is celiac. If you only have some of them, the matter is more complicated.

What I'm saying, is that even if Dr. Fine can't technically diagnose celiac, because of medical convention, that doesn't change how any individual defines his or her disease for him or herself. Even if Dr. Fine doesn't say it, if you feel comfortable saying it's celiac just for ease of explanation or any other reason, you can. It's hard enough to explain the disease to people who don't know about it, or convincing dr.s you have a problem, without having to meet the letter of archaic medical definitions, to boot...

(Again, not knocking Dr. Fine. He says it the way he has to.)

[kbtoyssni]

I would have been disappointed with a negative result, too. It's not the you WANT to have celiac, but you do want to know what's wrong and get back on track to good health again. A negative result doesn't necessarily mean you don't have it. It just means that if you do have it, you're lucky and don't have much intestinal damage yet. Were you gluten-free when you got the biopsy done? If you were your intestines had some time to heal and probably wouldn't show much damage.

Funny that you mention Nexium possibly causing your somach pain. My doctor gave me some a number of years ago to help with my chronic stomach issues and it only make my stomach feel worse. Looking back, I wonder if Nexium has gluten and was really just exaserbating the celiac.

I have not had Enterolab testing, but everyone around here seems to have had really good results with it. It won't tell you if you have celiac - it will only tell you if your gluten sensitive - but the two are practically the same. They have the same treatment.