Very Frustrated With No Answers

[klv1]

I've been suffering with tummy troubles for about 18 months now.  I get severe bloating, gas, and feeling of fullness after eating only a small amount, no "C" or "D", or nausea though.  I wake in the morning and feel OK but a few hours after my first meal is when all the symptoms start.  By the time I'm in bed for the night, I am so bloated and gassy that I have laid there wondering if it's possible for your stomach to explode from to much gas in it, that's how bad it gets.  

 

So about a month ago I went to see the doctor and described my symptoms, she was unsure what my condition was and suggested I try a low-fructose diet, and ran some test.  I went on the low fructose diet and cut out a bunch of gluten as well (wheat has the fructans) and felt about 70% better.  After 2 weeks I returned to the doctor and told her I felt about 70% better but I wanted a test to make sure it was fructose (because that is a hard diet to be on).  She referred me to a GI doctor (still waiting for that appointment), and ran more test for food allergies and Celiac disease.  That was two weeks ago.  About a week ago, I decided maybe it was just gluten and not the fructose.  So I've tried to cut out all gluten from my diet and did not worry about fructose.  I started feeling about 85% better.  I was thinking great, I can handle a gluten free diet (better then a fructose free diet), and if it is Celiac Disease, at least I will have a better understanding about what is going on.

 

I just got the call from the doctors office and all tests are negative!  No food allergies, negative for Celiac disease, no closer to an answer about what is going on with my tummy.  Could it be a false negative?  Is there any other conditions it might be?  I am so lost and frustrated!!  

[mushroom]

Yes, it could be non-celiac gluten intolerance, which is about six times more prevalent than actual celiac disease (supposedly it is not an autoimmune response - and I say supposedly, because they don't know much about it yet).  Or it could be a false negative, or you may not yet be making sufficient antibodies to measure yet.  Or it is most likely that after two weeks of very low gluten before testing, that enough healing had taken place that the antibodies they test for had retreated

 

If you have been gluten lite for only a month, it has not been enough, or long enough to feel the full benefits yet.  Keep up the diet and I believe you can get back to 100% whether it is actual celiac or non-celiac gluten intolerance.

 

At this point testing by the GI is probably not going to help because you have a month of healing and even the biopsy could well be falsely negative at this stage and you would have to do a gluten challenge to be accurately tested.

[mamamonkey]

Actually, the biopsy could possibly still tell you something. But, it's an invasive test and there are risks with that, so you would have to weigh the risks/benefits. I had to have both endo and colonoscopy for other reasons. I had an endoscopy at 5 months mostly gluten free (mostly meaning a cheat every 3-4 weeks and not watching CC at all) and I had Marsh 1. That with my dietary response led the GI to dx celiac. My blood tests were negative b/c they weren't done until a month before the scope. 

[klv1]

Actually, the biopsy could possibly still tell you something. But, it's an invasive test and there are risks with that, so you would have to weigh the risks/benefits. I had to have both endo and colonoscopy for other reasons. I had an endoscopy at 5 months mostly gluten free (mostly meaning a cheat every 3-4 weeks and not watching CC at all) and I had Marsh 1. That with my dietary response led the GI to dx celiac. My blood tests were negative b/c they weren't done until a month before the scope. 

Probably a stupid question, but what is "CC"?

[klv1]

Yes, it could be non-celiac gluten intolerance, which is about six times more prevalent than actual celiac disease (supposedly it is not an autoimmune response - and I say supposedly, because they don't know much about it yet).  Or it could be a false negative, or you may not yet be making sufficient antibodies to measure yet.  Or it is most likely that after two weeks of very low gluten before testing, that enough healing had taken place that the antibodies they test for had retreated

 

If you have been gluten lite for only a month, it has not been enough, or long enough to feel the full benefits yet.  Keep up the diet and I believe you can get back to 100% whether it is actual celiac or non-celiac gluten intolerance.

 

At this point testing by the GI is probably not going to help because you have a month of healing and even the biopsy could well be falsely negative at this stage and you would have to do a gluten challenge to be accurately tested.

Is there a test to confirm gluten intolerance?  I'm tempted to do gluten OD for the next 12 days before my GI appt. and have them re-test me.  It's driving me nuts not having a clear answer, and it's so expensive every time I have to go to the doctors.  I wish they had a policy where you don't pay until they give you a diagnosis .

[kareng]

Is there a test to confirm gluten intolerance? I'm tempted to do gluten OD for the next 12 days before my GI appt. and have them re-test me. It's driving me nuts not having a clear answer, and it's so expensive every time I have to go to the doctors. I wish they had a policy where you don't pay until they give you a diagnosis .

Currently, there is no legitimate test for non- Celiac gluten intolerance. There are a few places that would love to take your money but they appear to have no science behind their tests.

You should get a copy of the labs. See if they really ran A Celiac panel. Some docs run one thing or even read the results wrong. Not sure why.

Cc- cross contamination. Like when someone cooks your burger on the grill where they just toasted a gluten bun.