Neg Test Doesn't Seem To Be Uncommon?

[rivrrat]

For the last couple of years I've been struggling with symptoms that I'm sure all of you here are familiar with. Started - strangely - after I quit smoking, started eating "healthier", and getting more exercise. Suddenly I was feeling worse, not better. Started out with just a lot of gas. And I mean, a LOT of gas. Progressed to what appeared to me to be mucus in my stool. Eventually it was periodic diarrhea and constipation, with abdominal discomfort with the gas, and occasional nausea. And difficulty losing weight, though that might be unrelated.

What finally forced me to go to the doctor was the necessity to have to run to the bathroom at unexpected moments and on occasion, not making it in time and actually soiling myself. As a child, that's expected. As an adult, not so much. I was taking anti-diarrheals and gas x just to be able to go out of the house. Oddly, these symptoms would get "better" and worse without much of a pattern. Some days were okay, others I could barely leave the bathroom at all. It was affecting my work, and my personal life. I couldn't do any outdoor activities because I couldn't stray far from a bathroom. More than diarrhea, this was a gas problem in that in passing gas, I most often passed other - shall we say "stuff" - with it. So I couldn't pass gas without being on a toilet.

Now that we have the TMI part out of the way, on to what the doc did.

First, lactose free diet. Didn't change anything.

Then, tests for parasites and infection. Found signs of possible infection, so we did a round of antibiotics. Here's where the real head-scratcher is: While on the antibiotics, my symptoms lessened a great deal. A couple of days after going off the antibiotics, my symptoms re-appeared. The doc was confused about this, but assumed I must have an infection but didn't stay on the antibiotics long enough. So, another round of them. Same results.

A couple of weeks later I had to take some different antibiotics for a completely unrelated issue. While on these... my symptoms were gone. I mean, GONE. I thought I was "cured". That was it. Whatever it was was killed.

No such luck. Symptoms returned. I was taking immodium and gasx 3 - 4 x a day just to be able to function normally and go to work and to the store, etc. So my doc says to go gluten free. Within a week of gluten free, I see a relief of symptoms. No more need for the anti-diarrheals. After another week of it, I go back to the doc to report and he does a blood test for celiac - both of us hopeful that we have found the culprit finally.

Test is negative.

Now, it's not that I WANT to have celiac because believe me... after being on the diet for a couple of weeks, I assure you that I do NOT. But what I do want are answers. My symptoms while on the diet have lessened a great deal. Gone? Not completely, but so very much better. The only time I really have the tummy rumbling and loose stool is first thing in the morning now. No more running to the toilet to pass gas. I can actually go for a walk and not have to turn around and run back to the house. Still a little nausea here and there, but I'm also pretty new at the gluten free thing and I know I've screwed up here and there.

So, the nurse tells me the results are negative today and says "That's good!" And she just leaves me with that. My next appt with the doc isn't for 2 months and he's not left me with any indication of what to do NOW. I know he's probably going to do a colonoscopy or endoscopy because he's mentioned it. But, I'm actually thinking of going to another doctor.

So, after all of the rambling above, we come down to this (and I can't believe you're still reading!) I see from a search here that the negative results are fairly common. So, I guess what I'm wondering is... what now? If I go to another doc for a second opinion and a doc that I feel maybe will take my problem more seriously, what do I ask for ? What do I need to have done? I'm not sure I want to commit to a full gluten-free lifestyle without a diagnosis. Even though it seems to be helping, it's not helping 100% (though granted, it's not been that long) And, I worry that it could be something far more serious (cancer, polyps, etc) I'm just not sure what to ask for.

[ravenwoodglass]

First off your doctor should have tested you before he put you on the diet. If you are going to get the endo you need to go back to a full gluten diet for any chance of the test having an accurate result. However you are seeing your symptoms resolve gluten free. It does take some time to heal and to get the hang of the diet as there is more than just food to be concerned about. You have a choice to make, either stay gluten free and go by your bodies response to the diet or go immediately back on gluten in preperation for the endo. If you choose to go back on gluten and your body reacts badly the bad response is also pretty diagnostic.

[mushroom]

Welcome to the forum, and the frustrations of trying to get a diagnosis. You are not alone.

If only the doctors would give the celiac blood test and the endoscopy first and then, whether or not these are positive, tell you to go on the gluten free diet, a lot of these problems and frustrations could be avoided. By being gluten free for two weeks prior to the blood testing your antibody levels could have dropped low enough to be under the testing radar. And if he waits for another couple of months to do an endoscopy it is 99% certain that your gut will have healed enough that that will show up negative too. Of course, the testing could all have been negative regardless, because there is an approximate 20% error rate of false negatives.

So now you have negative blood work but a positive response to the diet. And no, you shouldn't expect to feel all better right away - it took you a while to do the damage that gluten has accomplished, and it will take it a while to heal, if that is what has been causing your symptoms. It is a positive that you are not lactose intolerant because that likely means that there is minimal damage to the small intestine (which makes the enzyme to digest lactose). You really should give the gluten free a good three-month trial before you start forming an opinion as to whether it is working for you. I know you don't want to have celiac/gluten intolerance, none of us does, but if you do have it you have to deal with it or you risk precipitating other autoimmune diseases which will cause you more problems than diarrhea

Did the doctor really listen when you told him you were feeling better without gluten in your diet? Because if he did, he should have given you the advice I am giving you now. If gluten makes you feel bad, don't eat it. If stopping eating it makes you feel better, stop eating it! We've all heard the old joke, "Doctor, it really hurts when I do this." Doctor: "Don't do that" Well, that's what he should have told you.

Now, if you are one of those people who absolutely must have a doctor-confirmed diagnosis, the only way to accomplish this now is to resume eating gluten for another 2-3 months, the equivalent of 3-4 slices of bread a day, to reactivate the antibodies that the tests measure, and to perhaps damage your small intestine sufficiently for an endoscopic biopsy to be able to pick it up. Not a pleasant prospect, but unfortunately true. I have read just this morning that they are working on a test for reactivation antibodies that can be measured after a gluten flare, but that test is not yet available. Usually, after you have been gluten free for a while, you will have a stronger reaction to gluten from these reactivation antibodies.

Or the other testing possibility, which can be ordered online through Enterolab, is a stool test which measures the antibodies in the stool (where they tend to hang around a little longer). It is not a definitive diagnosis of celiac disease, but can give you some indication. They also measure fecal fat which is a measure of digestion, and can tell you whether you carry the major genes associated with celiac/gluten sensitivity.

Digest this information and whatever others have to add, and come back and ask any other questions that come up. We are here to help.