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justme

By justme
in Coping with Celiac Disease

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justme Enthusiast
justme
Posted

I am not even sure if I have Celiacs... I was "diagnosed" with IBS... nothing was helping.. it was recommended I avoid gluten.. and I feel muuuuch better... I am getting tested to know for sure on tuesday.. but I was wondering if you have any suggestions for "newbies"..

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Ursa Major Collaborator
Ursa Major
Posted

Hi, and welcome to our board.

Well, IBS is a junk 'diagnosis', basically meaning that the doctor is clueless as to what makes you sick.

How long have you been gluten-free? Testing after going gluten-free is pretty much meaningless, as you are more likely than not getting false negatives then. Unless you're being tested by Enterolab (Open Original Shared Link), you don't need to be eating gluten for their testing.

Your doctor should have done the tests for celiac disease before telling you to go gluten-free, not after. Arghhh, why are doctors so ignorant! In order for the tests to be valid, you'd have to go back on gluten for quite a long time before the villi will be damaged enough again to get positive tests.

Since the gluten-free diet is helping you so much, you're obviously at least gluten sensitive and should avoid it, no matter what. Is an 'official' diagnosis important enough to you to go back on gluten?

taz sharratt Enthusiast
taz sharratt
Posted
Hi, and welcome to our board.

Well, IBS is a junk 'diagnosis', basically meaning that the doctor is clueless as to what makes you sick.

How long have you been gluten-free? Testing after going gluten-free is pretty much meaningless, as you are more likely than not getting false negatives then. Unless you're being tested by Enterolab (Open Original Shared Link), you don't need to be eating gluten for their testing.

Your doctor should have done the tests for celiac disease before telling you to go gluten-free, not after. Arghhh, why are doctors so ignorant! In order for the tests to be valid, you'd have to go back on gluten for quite a long time before the villi will be damaged enough again to get positive tests.

Since the gluten-free diet is helping you so much, you're obviously at least gluten sensitive and should avoid it, no matter what. Is an 'official' diagnosis important enough to you to go back on gluten?

agree with everything ursula said, the best test in my mind is the diet, if you feel better on the diet there you arethen, take it from someone who has recently learned her lesson that way :unsure::unsure: i too was diagnosed with IBS what a crock of s**t to pardon the punn, ha ha! :D oh and sorry , welcome to the board

justme Enthusiast
justme
Posted
  • Author
Hi, and welcome to our board.

Well, IBS is a junk 'diagnosis', basically meaning that the doctor is clueless as to what makes you sick.

How long have you been gluten-free? Testing after going gluten-free is pretty much meaningless, as you are more likely than not getting false negatives then. Unless you're being tested by Enterolab (Open Original Shared Link), you don't need to be eating gluten for their testing.

Your doctor should have done the tests for celiac disease before telling you to go gluten-free, not after. Arghhh, why are doctors so ignorant! In order for the tests to be valid, you'd have to go back on gluten for quite a long time before the villi will be damaged enough again to get positive tests.

Since the gluten-free diet is helping you so much, you're obviously at least gluten sensitive and should avoid it, no matter what. Is an 'official' diagnosis important enough to you to go back on gluten?

well it only has been a couple of days... i am having the blood test on tuesday.. i figure.. since i feel better not eating gluten.. i'd go back to eating normally maybe tonight into tuesday morning.. i am just finishing up a gluten free breakfast.. and i have gluten free lunch in the fridge (i'm at work).. i really only has been a couple of days of eating only gluten free stuff and i feel soo much better... maybe it's just in my head?

ravenwoodglass Mentor
ravenwoodglass
Posted
well it only has been a couple of days... i am having the blood test on tuesday.. i figure.. since i feel better not eating gluten.. i'd go back to eating normally maybe tonight into tuesday morning.. i am just finishing up a gluten free breakfast.. and i have gluten free lunch in the fridge (i'm at work).. i really only has been a couple of days of eating only gluten free stuff and i feel soo much better... maybe it's just in my head?

No It's not in your head. Some do get relief from IBS symptoms quickly, others do not. There are a lot of false negatives on blood tests, there are also doctors who will see a low positive and tell you it's negative. The true test is how you feel on the diet.

loraleena Contributor
loraleena
Posted

I was diagnosed with IBS 9 years ago, which was followed by a bunch of autoimmuned diseases. Guess what? Last year I found out I had gluten intolerance. IBS is the number one misdiagnoses for celiac disease! If you feel better gluten free, then you have your answer. You are at least gluten intolerant, which can cause lots of health problems for you in the future if you continue to eat gluten. Since you are already gluten free, you should get a stool test from enterolabs to confirm, but it sounds like you found out on your own.

Guest nini
Guest nini
Posted

IBS is a compilation of symptoms, NOT a diagnosis. If you feel better on the diet, it is NOT in your head and you have your answer. Regardless of what your test results show, go ahead and go gluten free. Why should you trust me on this? Because I was "dx'ed" with IBS over 10 years ago or more and just continued to get sicker, when I was first told about gluten intolerance I scoffed at it and thought yeah right, I'm not giving up my Krispy Kremes and Egg McMuffins... after very nearly dying, having several miscarriages and very nearly losing my daughter, I was finally accurately dx'ed when my daughter was 3. If I had listened when I first heard about gluten intolerance, I could have avoided years of illness and I am hoping that by sharing my story that others will not go the same route that I did.

Positive dietary response is THE MOST VALID diagnostic tool, the other tests can only confirm it, they cannot rule it out. And the diet is very healthy if done correctly and there is no reason to not do the diet. If you didn't improve on the diet, you could still pursue other testing to rule out other things, but since you have already noticed an improvement on the diet, I'm telling you that you have your answer and do not need to satisfy your Dr.s morbid curiosity. If he's telling you to do the tests AFTER already going gluten-free that shows he doesn't really know a thing about Celiac or gluten intolerance and can't be trusted anyway. Just be smart. Do what you need to do for your own piece of mind, but I urge you to just trust your gut at this point and just go gluten-free. You do not need a dr.s permission for the diet and do you really want a dx of Celiac on your permanent record anyway? I was denied health insurance coverage because of it.

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