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They say I don't have celiacs but is it NCGI?

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I've never posted anything concerning this anywhere and I'm usually a forums troll, but I see how helpful this community is and wanted to gain some perspective.

For the last full year following my first ever Endoscopy and in preparation for a very stressful move overseas, I developed a belching and choking feeling that was utterly relentless. I switched PPI medications for my heartburn issues several times but the belching and choking never relents. Fastforward to now, I've cut out dairy almost entirely but still belch and the choking feeling is again constant. I decide to finally try to cut out gluten (third attempt) and I make it two days and feel soooo hungry and have some massive cravings. I binge on a lemon pie (sue me). It was nearly half the pie and I thought oh well I'll burn off most of it at the gym. 15 minutes later I can't move and pass out on my couch for 2 to 3 hours. It was like being hit by a car. Do you think I might have NCGI and cutting out gluten may help with all my symptoms?

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First off, what testing did they do to decide you aren't celiac? When were these tests performed? Did they do a celiac blood panel prior to the endoscopy? Which tests did they do? You should have/get/keep copies of all medical tests for your own records (even the ones not dealing with celiac). Did they do biopsies during the endoscopy? How many? From what areas? What does the pathology say? Were they even looking for celiac or was it something else? I'm just wondering if the testing done on you was done properly for ruling out celiac disease. You'd be surprised how many people think they've been tested but later find out the docs didn't do it correctly.

Your symptoms could be celiac or NCGI -- they both have the same symptoms but there is no test for NCGI. Then again your symptoms could be something else.

Your rabid hunger after 2 days gluten free sounds a lot like gluten withdrawal. That will pass if you maintain a gluten-free diet but you have to stick with it.

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10 hours ago, Trewdab3 said:

Do you think I might have NCGI and cutting out gluten may help with all my symptoms?

You might and it may...

You need to decide whether you're done with testing, see SI's comments above. If you've had the full celiac panel and a negative endoscopy then you may be like me, someone that reacts to gluten but doesn't show up on the tests. NCGI is a diagnosis of exclusion, if you react positively to a gluten-free diet then once you've excluded celiac you can call it NCGI. I used to feel like I'd been hit by a train after meals. I had belching and bloating and horrendous heartburn and much more besides. Ditching gluten has stopped that and even though I don't have a diagnosis to help me stick to the diet I'm never going to eat gluten willingly again.  

If your doctors have excluded celiac then you have nothing to lose, and potentially much to gain, from properly trialling the gluten-free diet. The key point to remember is that there can be NO EXCEPTIONS WHATSOEVER, if you're going to find out if gluten is the source of your problems.

You'll get lots of support here if you choose to go ahead and trial the diet. It's obviously restrictive, but if its the source of your problems you'll probably find that feeling well is all the incentive you need to keep to it. My advice would be to start a food journal to track any changes and to get some nice gluten-free foods in your cupboard to make sure if you do have some urges you don't slip on the diet. 

Best of luck :)




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