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Is This Celiac Or Sensitivity To Gluten?


michelley65

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michelley65 Rookie

Im going absolutely nuts trying to figure out what to think of my condition.I have been battling this problem of terrible gas and bloating,and even diahrea after eating for probably 5 years now.I noticed that it was always worse after eating gluten.I went to a gasto a year and a half ago...he did a hydrogen breath test and said its bacterial overgrowth.He gave me antibiotics and after quite a few rounds...it was still going on.I told the doctor about the gluten problem,so he ordered a test for celiac.The test came back negative.Since then,I have been watching what I eat..until I am home from work..then I eat gluten and it starts up..every night!!I called the doc..he ordered bloodwork for celiac again.I had it drawn thismorning..but I think it will come back negative again.I know I atleast have a sensitivity to gluten..maybe even celiac..who knows.Is anyone out there having this same problem with a negative test result?I am trying to have a gluten-free diet now,but I mess up here and there and then Im in pain all evening.HELP!


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Wolicki Enthusiast

Im going absolutely nuts trying to figure out what to think of my condition.I have been battling this problem of terrible gas and bloating,and even diahrea after eating for probably 5 years now.I noticed that it was always worse after eating gluten.I went to a gasto a year and a half ago...he did a hydrogen breath test and said its bacterial overgrowth.He gave me antibiotics and after quite a few rounds...it was still going on.I told the doctor about the gluten problem,so he ordered a test for celiac.The test came back negative.Since then,I have been watching what I eat..until I am home from work..then I eat gluten and it starts up..every night!!I called the doc..he ordered bloodwork for celiac again.I had it drawn thismorning..but I think it will come back negative again.I know I atleast have a sensitivity to gluten..maybe even celiac..who knows.Is anyone out there having this same problem with a negative test result?I am trying to have a gluten-free diet now,but I mess up here and there and then Im in pain all evening.HELP!

I guess I just don't understand why you would continue to eat gluten when you have such reactions. The lifelong cure for either Celiac or gluten intolerance is a 100% strict gluten free diet. Stick to the diet religiously if you want to feel better. It's not a part time thing.

gf-soph Apprentice

What it comes down to is that you don't have to have a diagnosis of celiac in order to go gluten free. I can understand wanting the tests to come back positive so you are sure, but you have to listen to your body.

Assuming these tests come back negative, why not try the diet, strictly, for at least a few months. NO cheating. If you feel better, keep going with the diet. There is a lot of information around here about testing, and about false negatives as well. There are also people who have gone gluten free without a positive blood test and feel much better.

You've had problems for 5 years, so why not put aside a few months to really sort out whether gluten is the problem. You obviously suspect it, so cut it out! It may be that you think the diet will be too hard, but you will adjust. This might be a chance to get well again, why not give it a go?

ravenwoodglass Mentor

Some of us will never show up in blood tests. I don't know why but the NIH estimates that 20% of us have false negative results. Being one of those who don't show in blood tests came very close to costing me my life. When all your testing is done get on the diet for at least 3 months or so. Your body may give you the answer testing cannot. I did finally get diagnosed but was close to death by that time so don't wait years for a positive blood test before you give the diet a shot.

tarnalberry Community Regular

You don't need a blood test to know that gluten isn't good for you - your symptoms tell you that.

Just like you don't need someone to tell you that smacking your head against the wall is going to hurt - you just don't do it.

Ok, ok... maintaining a gluten free diet isn't quite that easy; we don't have people banging their heads against walls all the time and saying it feels really good even when we think it doesn't. But the concept is the same.

There aren't any good, main-stream accepted tests for non-celiac gluten intolerance yet. Not to mention celiac tests are NOT a simple "yes/no" read. If you know you do better without gluten, make the decision to go gluten free, and stick with it. The learning curve is hard (not just learning the foods/labels/etc., but the habits and mindset), but you can do it.

michelley65 Rookie

Thankyou all for your advise...I am trying so hard to stick with this.I have been almost gluten free for two weeks now...but am making little mistakes with seasonings and such.I have alot to learn!Does anyone know if pizza sauce is gluten free?I wanted to make a pizza tonight,but wasnt sure.

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    • trents
      Yes, it does. And joint pain is another celiac symptom that is now well-recognized. 
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      Does my iron loss sound like celiac to you?
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      Being as how you are largely asymptomatic, I would certainly advise undertaking a gluten challenge in order to get formal testing for celiac disease. We have many forum participants who become violently ill when they undertake a gluten challenge and they therefore can't carry through with it. That doesn't seem to be the case with you. The reason I think it is important for you to get tested is that many or most people who don't have a formal diagnosis find it difficult to be consistent with the gluten-free diet. They find ways to rationalize that their symptoms are due to something other than celiac disease . . . especially when it becomes socially limiting.  The other factor here is by being inconsistent with the gluten free diet, assuming you do have celiac disease, you are likely causing slow, incremental damage to your gut, even though you are largely asymptomatic. It can take years for that damage to get to the point where it results in spinoff health problems. Concerning genetic testing, it can't be used for diagnosis, at least not definitively. Somewhere between 30 and 40% of the general population will have one or both of the two genes known to be associated with the development of active celiac disease. Yet, only about 1% of the general population will develop active celiac disease. But the genetic testing can be used as a rule out for celiac disease if you don't have either gene. But even so, that doesn't eliminate the possibility of having NCGS (Non Celiac Gluten Sensitivity).
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