Is It Celiac?

[arabookworm]

hello,

I tested in december for celiac, but it came up negative. however, it came up positive for several vitamin and mineral deficiencies (iron, zinc, vit. d). the numbers for the celiac test were firmly in normal range though. I got tested again to see how the iron levels were doing, and we redid the celiac test too just to double check. I still haven't gotten the results for that one though. my symptoms, nausea, diarrhea, constipation, fatigue, etc., all point to celiac. my doctor said to start on a gluten free diet for a few weeks to see if it helped anyway. how likely is it that it actually is celiac? and if it is celiac, how likely is it that the second test will come up negative too? and would an endoscopy diagnose it definitively? because there was talk of doing one of those.

[arabookworm]

and I clicked on the wrong section of the forum... sigh...

[eatmeat4good]

If it is Celiac and you are not eating gluten, you are not likely to test positive by blood or biopsy. The endoscopy should be done while you are eating gluten. Your Dr. said to try going gluten free to see if it helped your symptoms? Has it helped? If it has then you are likely Celiac or Gluten Intolerant. But if you want a positive test to prove it then you would have to resume eating gluten for that.

It sounds like you have a good Dr. He knew to tell you to give the gluten free diet a try in spite of a negative test, AND he tested you again to be sure. That's pretty unheard of and you are lucky. If the gluten free diet helps you, just stay on it. Unless you feel strongly about the biopsy that is. But even if you had kept eating gluten the biopsy and blood tests could be negative and you could still be Celiac. It is a personal decision.

[arabookworm]

If it is Celiac and you are not eating gluten, you are not likely to test positive by blood or biopsy. The endoscopy should be done while you are eating gluten. Your Dr. said to try going gluten free to see if it helped your symptoms? Has it helped? If it has then you are likely Celiac or Gluten Intolerant. But if you want a positive test to prove it then you would have to resume eating gluten for that.

It sounds like you have a good Dr. He knew to tell you to give the gluten free diet a try in spite of a negative test, AND he tested you again to be sure. That's pretty unheard of and you are lucky. If the gluten free diet helps you, just stay on it. Unless you feel strongly about the biopsy that is. But even if you had kept eating gluten the biopsy and blood tests could be negative and you could still be Celiac. It is a personal decision.

my father is a gastoenterologist, so he's sort of bullying his way into getting them to do these things lol. though he says he doubts it is celiac because of the blood test and thinks its probably an allergy or something.

[mushroom]

Well, it may not be celiac, but it could certainly be non-celiac gluten intolerance. In a non-challenging way, ask your dad if you could be intolerant of gluten even if you are not celiac? You might try doing some research on this yourself. And if gluten free works for you, do stay that way!

[arabookworm]

Well, it may not be celiac, but it could certainly be non-celiac gluten intolerance. In a non-challenging way, ask your dad if you could be intolerant of gluten even if you are not celiac? You might try doing some research on this yourself. And if gluten free works for you, do stay that way!

it's only been three days, so its hard to tell, but I've had less nausea than usual thus far. fingers crossed I guess (though whether im hoping it works or doesn't work, im not entirely sure lol)

[T.H.]

it's only been three days, so its hard to tell, but I've had less nausea than usual thus far. fingers crossed I guess (though whether im hoping it works or doesn't work, im not entirely sure lol)

Hope that you've found the answer for your trouble!

Also, it might help you dealing with your dad if you take a look at the research section here - within the last month or so, I think, they had some links to new studies on celiac research. Stuff on false negative tests, the fact that there is now some interesting evidence on the existence of non-celiac gluten intolerance, and I think they also had a link to a study on people with one positive test, one negative, who have some of the same issues in digesting food as those with positive tests.

It's pretty new, it's doubtful he's heard about it unless Celiac Disease is his specialty, and it might help sway him to supporting you in this, actually. :-)

[cassP]

it's only been three days, so its hard to tell, but I've had less nausea than usual thus far. fingers crossed I guess (though whether im hoping it works or doesn't work, im not entirely sure lol)

plus, let's think about it for a second-> Celiac is the autoimmune disease of the small intestine. but gluten has been shown to induce damage all over the body, and has been linked to so many additional diseases and conditions. i dont think u have to have certain antibodies test positive to legitimately get nauseaus or have heartburn from gluten. wheat germ agglutin has been linked to Barrett's esophagus, and gluten has also been linked to crohns & ulcerative colitis... so not having celiac doesnt always mean the end of the story.