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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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    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
    • I know that Lea & Perrins Worcestershire Sauce  in the US is gluten free, I also know that in Canada it is NOT. This is a very reliable site: http://www.glutenfreedietitian.com/vinegar/ But it is in the US. I'm agast that the Irish Celiac Society says malt vinegar is gluten free.  I wouldn't use it. No sense taking any chance at all.
    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • Hi All, I'm new to this and very confused! I have Lea & Perrins WC sauce, it lists it's first ingredient as Malt Vinegar.  I have the Coeliac Society of Ireland Food List 2015 here, and it says "All Vinegars are Gluten Free including Malt Vinegar." Doesn't that mean that L&P Worcestershire sauce is safe?   Their website states " Lea & Perrins® Worcestershire Sauce is cholesterol free, fat free, preservative free, gluten free and has 80% less sodium than soy sauce. " I'm cooking for my coeliac niece, can't afford to make a mistake!
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