I'm So Tired Of Testing Negative For Everything. Support? Advice?

[Erin122]

I'll try to shorten my story, maybe someone can help me...

I was pretty convinced it was celiac. For about 3 months I've had diarrhea which fits the classic celiac description, nausea and vomiting (daily, it would start when I woke up and continue until lunchtime), bloating, belching and cramps. I've had some gallbladder pain but nothing debilitating. I've lost about 10 pounds (which, off of my now 90-pound, 5-feet-tall frame, is a too much to lose without reason). I've also had canker sores out of nowhere.

SO I had blood work and stool tests for ova and parasites, various infections and bacteria, celiac, as well as a full workup of vitamins, etc. And it all came back negative. Perfectly normal. When I had the blood work done I had just dropped 10 pounds in a month from my normally stable weight and I had been vomiting 4-6 times a day for that month. I was too weak to drive myself to the lab and had eaten nothing but applesauce for days. I was pretty surprised that everything came back normal.

I had to wait about 3 weeks to see the GI. In the mean time, I noticed that the usual bland "upset stomach foods" like crackers, toast, etc. made me feel so much worse, and applesauce and bananas were basically the only things I'd been eating that I could tolerate. So I thought hey, let's try something...and I avoided gluten for the next three weeks. I wasn't trying to self-diagnose or anything, but I figured it would be stupid to eat things that I knew made me sick. And by the time I went to the GI, I was feeling better! My diarrhea had stopped, and I was okay most days but I would have the occasional day where I would wake up and vomit with no explanation.

The GI suspected celiac. He said false negatives for gluten antibodies were fairly common, which I knew...and since I had not really been eating much of anything at the time of my test, let alone gluten, I figured it sure was a possibility. He told me that since I'd been feeling better eating gluten-free, to keep doing it for the time being. He ordered the test for celiac genes (specifically DQ2 and DQ8) and scheduled an upper endoscopy. He told me based on my symptoms, if I had either of the genes he would diagnose me, cancel the endo and call it a day. If I didn't have them, we would do the endo and go from there.

Well, I don't have them. I was pretty disappointed when I got the call today because after being so sick for months, you think you know what the problem is and you just want a confirmation...it's not that I wanted celiac, but I was hoping that was it because then I would KNOW. And all I would have to do is change my diet. So now I'm going for the endo in 3 weeks. I'm so discouraged at testing negative and normal all the time. Because there's obviously a problem, so how come no tests are showing it? I'm so worried (and convinced, now) that the endoscopy will show healthy, normal-looking intestines and I'll still be left without an answer.

If I was gluten intolerant but not celiac, wouldn't I still have shown antibodies? I really thought gluten was it. Where do I go from here?

[ravenwoodglass]

While the two genes you were tested for are the most common celiac associated genes they are not the only ones. If you are going for an endo you really need to be back on gluten, at least 3 slices of bread worth a day. Even then you could have a false negative on testing. If you are now gluten free and feeling better and going back on gluten makes you sick that is pretty diagnostic also. After you are done with testing do go back to giving the diet a good strict try.

[GFinDC]

Well, you seem to already know the answer. You said your symptoms cleared up when you stopped eating gluten right? Seems pretty clear you shouldn't eat gluten then. The gene testing doesn't prove or disprove that you have celiac. Many people have some of the genes but don't have celiac. No matter what a doctor tells you it is best to listen to your own body. If your body tells you clearly not to eat gluten then it would be best not to eat gluten. Label yourself however you want to, some people call it gluten intolerance when they don't have the genes or villi damage but still have symptoms. Your doctor is right, the tests are not perfect, and if you were gluten free they are most likely not going to show anything on the endoscopy or antibody blood tests. Another option is Enterolab testing which some people do. It can show antibodies in the stool, but is not accepted by many doctors.

Another test is a food challenge, where you stay strictly gluten free for a few months and then try eating gluten again for a month. Most likely you will develop symptoms when you start eating gluten again if it is a problem for you. This works well for people with GI symptoms but may not work for people who don't have obvious GI symptoms. Your symptoms seem pretty clear though, so it would probably work for you.

[Erin122]

Thanks for the advice, both of you. I think I'm going to go back on gluten until the endo, unless I get partway through and can't stand the rest. If they don't find villi damage and they don't find any other cause for my problems, I've just going to go with self-diagnosis by carefully monitoring my diet and symptoms.

You're right that there's no sense eating something that my body obviously can't tolerate for whatever reason just because no one can give me a piece of paper saying it.

[GFinDC]

I understand wanting a doctor to say it is this or that. I had to wait 3 months to see a celiac specialist and of course went gluten-free meanwhile. So my tests were negative, except for a gene positive. However I had such dramatic improvement when gluten-free that I knew it was not in any way good for me to eat it. Now I am kind of glad I was not diagnosed since it isn't on my medical records as celiac. It's not like the docs can do much of anything about celiac anyway. They tell you to go home and don't eat gluten. Duh! We can tell you that for free right here. And repeatedly too, many times a day if needed. :D

Most likely you will find that you get more sensitive to gluten after you have been clean of it for a while. Some of us get very sensitive to even tiny, tiny amounts of gluten, called cross contamination. I hope you feel better soon and find your way through the gluten maze.

[Tina B]

If staying off gluten makes you feel better just do it.

[star25]

HI NEW HERE LIKE YOU BEEN SUFFERING MY OWN SYMPTOMS EXCEPT BACKWARDS SO INSTEAD IVE GT CONSTIPATION AND IN A FEW MONTHS WENT FROM A HEALTHLY 10ST TO 13 AND HALF WITH ALOT ABDOMANAL PAIN,GOT TOLD IT WAS IBS,ACID ETC THE USUAL HOWEVER MY BLOOD

ALWAYS SHOWED HIGH WHITE CELLS FINALLY GOT TO SEE GASTRO WHO SENT ME FOR CT SCAN

SHOWED SWALLON NODES THEN JUST HAD UPPER GASTROSCOPY 8/11/2010 HAD BIOSPSYS DONE

AS FINALLY IT SHOWED DAMAGE TO INTESTINES SO WAITING ON THE CELIAC BIOSPY AS I HAD

THE BLOOD TEST AND IT CAME BACK NEGATIVE AND I HAVE ALL THE SYPTOMS EXCEPT 2 OF

THE MAIN ONES GOES OPPISITE LIKE WEIGHT GAIN INSTEAD OF WEIGHT LOST...

HOPE YOU HAVE ANSWERS SOON AS IVE BEEN LIKE THIS FOR 8 MONTHS AND GETTING

FED UP,BEST WISHES