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Very Frustrated With No Answers
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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!!  

Edited by klv1
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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 :unsure:

 

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. :(

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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. 

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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"?

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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 :unsure:

 

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 :) .

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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.

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    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
    • I'm glad I found these forums!  I will spend some more time this evening reading through them.  But I wanted to get my question out there just to see if anyone else might have answers quicker than I can sift through the forum for them.      I've been feeling terrible for about a year, and after an elimination diet last month, figured out that if nothing else, gluten/wheat is a problem.  After lots of research, I abandoned the elimination diet and added gluten back in, so that I could get tested for Celiac.   I was off gluten for 3 weeks, from mid-June until early July.  I've had it back in my diet for almost 3 weeks now.    My question is this: Since I was off gluten for 3 weeks, and now back on for almost 3, is that enough time on to yield a positive Celiac blood test, if that indeed is what I have?  All the research I've done says 4-6 weeks for a gluten challenge, but is that really necessary if I was only not eating it for 3 weeks?  I am desperate to get this testing done and over with.  I feel terrible all the time and getting through the day is a struggle.  My doctor ran allergy panels already and everything came back clear except for a mild wheat allergy.  So if nothing else, I'll have to give up wheat for sure at the end of all this.  I get the feeling she doesn't know a ton about Celiac though, so I'm doing a lot of the research on my own. Any advice or information would be so appreciated! 
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