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Avatar universal

Celiac Disease negative test

So, about a year ago, my gall bladder ruptured, and I had to have it removed in emergency surgery.  Since then, I've had a chronic case of diarrhea, which has been perpetually getting worse.  I went to my doctor, and she had my blood tested for Celiac Disease, which came back negative.  She also had a stool sample test done to make sure I didn't have any type of bug.  That also came back negative.  She wanted to just let it "ride out" and heal itself.  Since it was getting worse, and starting to effect my quality of living I objected, and was sent to see a GI doctor.   He did some more blood tests, and they came back negative.  So I had a colonoscopy and endoscopy performed. That was well over two weeks ago and haven't heard anything.  He said if anything was found he'd call me in 7 days.  So far, everything they have tested me for is negative.  In doing internet research, the only reasonable things that could be the cause are Celiac disease, or Chron's Disease.  Reason being is my stomach is really sensitive to foods, mainly wheat based foods.  About 30 minutes or so after I eat, not every time but probably 85 percent of the time, I get diarrhea.  It's almost like nothing stays in my body.  I'm always thirsty.  My body seems to be able to digest plain proteins okay, as well as veggies.  I'm always really thirsty too.  I've had a little weight loss, but nothing dramatic.  My hands always fall asleep during the night, so I often wake up to "wake" them up.  I'm a bilateral above the knee amputee, so my feet are not a problem, as I don't have any.  Lately, I've noticed that after I eat my lips are slightly blue, or really really pale matching my complexion.  So far, all my doctors think I'm either crazy or a hypochondriac or something because they can't seem to find anything wrong.  I'm a young girl, 28, so I know I'm fairly healthy.  Even when I had my gall bladder removed the surgeons were stumped because they couldn't find a reason why it would fail at such a young age when I'm healthy and not over weight at all.  I'm at wits end trying to figure out what's going on because it's starting to really negatively effect my life.  I've even had accidents because my stomach just gets so upset with almost everything I eat.  And if I don't get bad diarrhea, I always...I mean ALWAYS...have gas.  Really bad gas too.  I'm ammune to pepto at this point because I used to use it all time (a bottle a week).  Can anyone help?  I'm tempted to try a gluten free diet just to see if it would help.

Thank you very much!
V
10 Responses
568261 tn?1250270162
Wow your so young to have had such a bad time.  My daughter too has had a problem with eating and stomach cramps...etc.   She also has joint pain and swelling like arthritis.  She breaks out in hives for no apparent reason.  She to went to many docs and no one seems to be able to find what the problem is.  I understand that the test for celiac can be negative even if you have it.  My daughter has not had that test yet.  She is 20 yrs old.   She decided to do the wheat free diet.  She has lost 15 lbs but feels soo so much better.  It is a very hard diet to do.  She also can't eat tomatoes or tomatoe based products.  She eats burgars w/o buns, I found a corn based pasta and other foods that are gluten free at our local health food store.  Chicken nuggents, bagels and even made her a chocolate cake that was a gluten free mix and very tasty.  
I know it has made her feel a ton better but was mentally hard to deal with.
Good luck to you.
Avatar universal
HI WELL I HAVE TO TELL U THAT THERE IS NOT A THING THEY CAN DO I AND MY HUSBAND HAS HAD OUR GALLBLADDER OUT AND WE BOTH HAVE THE SAME PROBLEMS U HAVE IT HAS NOTHING TO DO WITH HAVING CELIAC DISEASE, CHRON'S DISEASE. IT'S JUST U ARE SENTIVE TO FOOD SO JUST WATCH WHAT AND HOW MUCH U EAT EAT SMALL MEAL ABOUT 5 TIMES A DAY AND SEE IF THAT HELPS THIS IS WHAT I HAVE TO DO I ALSO GET REALLY BAD PAIN RIGHT AFTER I EAT. IT'S NO FUN I HAVE BEEN DEALING WITH THIS FOR ABOUT 10 YEARS NOW AND IT'S STILL THE SAME I JUST EAT REALLY SMALL MEALS. AND IF IT BOTHER MY STOMIAC THEN I WILL NOT EAT IT ANYMORE I HAVE TO FIND THINGS TO EAT. AND MY HUSBAND IS THE SAME WAY WE EAT AND WE HAVE TO STAY CLOSE TO A RESTROOM UNTIL IT PASSES. I KNOW IT ***** IT HAS RECK MY LIFE BECAUSE I JUST DON'T LIKE GOING OUT TO EAT BECAUSE I HAVE TO RACE HOME TO GET TO THE RESTROOM. WELL ANY MORE QUESTION LET ME KNOW AND I WILL TRY TO HELP U OUT OK. TAKE CARE LISA
605522 tn?1220131803
I don't know if you have celiac or not, but it shouldn't hurt you to try the diet.  The blood tests are not perfect, and can give false negatives.  Also there are some people who don't make one of the antigens due to the way their bodies are made, so the test for that particular antigen never shows a positive in them.  Sorry I don't remember which one it is.  Is your doctor celiac aware?  Did they do all the tests for antigens?  I have read that sometimes they only test for 1 of the 4 or 5 antigens, when they should test for all of them.  The endoscopy is not a perfect test either.  Celiac disease can cause problems in one area of the small intestine and another area can look fine.  So if the doc doesn't do a sample from the affected area they won't see signs of it.  If you do try the diet the tests are out though.  If you aren't eating gluten when tested the results are no good.
Avatar universal
Hi V,

You sound very similar to me.  I've had stomach problems for at least 5 or 6 years (I'm 25), and within the last 2 years, they have become increasingly worse.  At first, I lost my appetite, felt stomach pain, daily diarrhea, and just nothing was staying in my stomach.  I lost a little bit of weight too, but nothing too significant.  I had some tests done but they came back negative.  I got a little better so I just chalked it up to IBS and tried to move on.  About 6 months ago, things got worse again and I was experiencing WICKED BAD gas, stomach bloating, loose stools, and was ALWAYS thirsty.  I went to a different GI doctor who gave me another colonoscopy and endoscopy plus blood work for celiac.  The blood work came back negative; the endoscopy showed "mild blunting of the villi" and chronic stomach inflammation................but the GI doc said I didn't have celiac.

So, I was back to where I started.  I really thought I had celiac.  I lived with the EXCESSIVE gas and other stomach problems for about 2 months and then it got unbearable.  I finally was just like F it and decided to go gluten free.  I feel sooooooooooooo much better!!  Within 2 days, I felt better.  My gas has cleared up completely.  I always thought I was just a naturally gassy person....um, no!  I'm not gassy anymore unless I eat foods that I can't tolerate.

I just had test results done by Enterolab, which is a lab based in Texas where you send your stool there and they test it.  It's pretty expensive and not covered by insurance but to me, it was worth it to really see if I was intolerant to gluten.  My results showed I react to gluten, casein, and soy (which was something I had suspected but wasn't positive).  I'm a little sad I'm intolerant to soy, as I love soy lattes.

My advice ---- go gluten free!!!!  At least try it for a couple weeks and see if you improve.  There are many people who are gluten intolerant, but not celiac.  I view it as a spectrum, with celiac at the extreme end and gluten intolerant in the middle.  And I read from someone who said that a gluten free diet is very hard....well it's really not.  You can have a lot of food, and they make gluten free everything now.  I would suggest going to a whole foods or trader joes to begin with.  Their food is usually marked clearly.  Also, I would avoid restaurants for the first few weeks til you get a hang of it.  I still hesitate going out and I've been gluten free for almost 3 months.  

Good luck to you.  I usually don't write a book haha but you sound soooo similar to me that I had to share my story.  If you need anything, just message me!  
Avatar universal
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Philip Ngo
Avatar universal
Casseymae,

So, I finally got back all my tests for my colonoscopy/endoscopy.  Everything came back negative, so I do not have Celiacs.  But like you, I knew something was up.  I was so miserable after eating.  About 3 weeks ago, I said F it too, and I started cutting gluten out of my diet.  I feel sooooo much better!  I'm not too particular about it right now, but I'm avoiding the big things, all breads, pastas, etc.  I also avoid anything that has the word "wheat" or anything similar in the ingredients.  I haven't figured out everything to stay away from yet.  I've noticed even when I go out to eat, if I order foods with no wheat (at least from what I can tell), with mostly protein and veggies and no sketchy sauces I'm okay.  Although I tried getting stuffed Chicken Marsala at Olive Garden, which had no pasta.  BAD idea.  I should have known better that it would have had something that made me sick with the word "stuffed".  
And you're right, it's really not that hard.  It's harder explaining to people that you're "Allergic to pizza".  I know it's not the right terminology, but it's easier to explain using an allergy rather than intolerance.  
After 3 weeks, I already feel so much better.  I'm not constantly chugging pepto, not running to the bathroom, or starving myself when I know I don't have quick access to the bathroom.  I occasionally still get sick, because I'm still figuring out what I can and can't eat.

Thank you guys for all your help!!

V
Avatar universal
I had my gall bladder out when I was 20, 7 weeks after I had my daughter. That was over 8 years ago. They say pregnancy can bring on gall bladder problems.  Anyway, ever since i had it removed I feel the same as you.  The gall bladder makes an enzyme that aids in digestion of fatty foods it is not mandatory for survival, but it is important.  It makes no sense to me though that I can feel fine, and then eat and suddeny have to run to the bathroom in a panic.  How did it happen so fast?  The only thing I can recommend is absolutely do not eat any pork.  It is so difficult for the body to digest, it actually makes me throw up.  Do not eat any large meals, and by this i mean do not eat a meal that is fine for some one else, for you it will be too much.  Try adding fiber to your diet, to help bulk up your excretions.  It sounds like you are dealing with a lot.  Hope you feel better!  
Avatar universal
I would try the gluten free diet and see if it helps. It takes a little practice and you have to read all labels but it is doable. As someone else mentioned the tests can have false negatives. You could also order the test from Prometheus lab. It is a gene test. If you have the gene for Celiac's you can have it and be symptomatic which you sound like or you might never develop it even with the gene. Something triggers the gene to turn on. This test is expensive but if you pay it in 30 days they give you a huge discount.

I have been gluten free 3 months. You get better at it as you go. When you eat something wrong and you get sick you remember how it reacts with your body and you try real hard to not do that again. You will feel so much better each week that goes by it is amazing.

Eating out is a bit challenging. Don't do that for awhile until you get the diet down. I am now learning how to bake my own gf breads and desserts and so far so good. Each recipe is an experiment. Some turn out some don't but it is fun trying.

I hope you try it to see how much better you can feel. Good luck to you and keep us posted.
Avatar universal
So, I finally got my diagnosis.  I AM CELIAC!  Kind of a bummer, but kind of a relief since I was tired of the docs telling me everything was fine when it obviously wasn't.  My regular doctor just did a round of tests, and finally I got my diagnosis.  Since I was already starting a gluten free diet, it wasn't that much of a bummer when they told me.  I had already resigned to the fact that I couldn't eat anything with gluten anymore.  But a more interesting fact, is that the disease was actually brought on by a car accident.  About 4 years ago, I was hit by a car, and subsequently had to have both of my legs amputated.  This trauma "triggered" the gene to activate.  What is even funnier, is that I hung out with my best friend from high school a few weeks ago, and she said "guess what?  I found out I'm allergic to wheat".  Well, a while back, even before my accident, she was involved in a very bad car accident too, and had migraines, etc. ever since.  So basically, anyone out there....don't necessarily take what the docs say right away.  If you know something is off with your body, don't let them blow you off.  I spent a YEAR running back and forth with specialists.  My doctor was even saying that false positives are quite common because you may fall as "close" to celiac, but technically not in that category according to the tests.  So...keep bugging if you have too!!!

Thank you everyone for your suggestions!!!
Avatar universal
hey GTO --

I'm glad you finally have a diagnosis!!!  How are you doing?  Have all your symptoms subsided?  How did you finally find out you have celiac?  Wasn't your original endoscopy negative?

I've been gluten free for almost 6 months...I'm feeling much better.  The biggest change is no more gas!!!!!  However, I sometimes just wish I could have a diagnosis.  I had an endoscopy before going GF and even though it showed mild blunting of villi, I still wasn't diagnosed celiac.  I wasn't really diagnosed as anything, except chronic inflammation of my stomach.  Anyway, I'm really glad you have a diagnosis!!  
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