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LittleDende

Do I Sound Like I Have Celiacs?

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So I've been chronically ill all my life.

3 or 4 years ago I heard somewhere that if you feel tired all time, cutting out wheat could help.

I did stop eating wheat, and the results were drastic. I used to be, not just tired, but entirely lethargic (like, to the point where I couldn't hold my own jaw closed sometimes), and after cutting out wheat I was suddenly able to feel awake and alert, like almost all the time. It was a change I had never expected, but always hoped for. My husband says the difference between me then and me now is enormous.

But in addition to tiredness, some other symptoms I always had disappeared, too, like chronic abdominal pain, migraines, and some mental issues that were starting to worry me...

So, after I had cut down wheat and seen those drastic results, I did more research and and actually found out about gluten-intolerance and celiac disease, and that barley and rye had to go too.

I was wheat-free for about two years, and now gluten-free for about two more years, but I really want to know if I have celiac disease, or just gluten-intolerance, or even just a wheat allergy.

I *did* actually get tested here... but I need to explain how ..."non-helpful"... the doctors here are. I went to both my GP and a gastroenterologist (?if that's even the right name?), and pretty much I was never able to get a word in edge-wise. =/ My GP did a blood test for me, and even though I said I hadn't been eating gluten for some time, he said it didn't matter.

The test came back negative.

The gastro-specialist actually did a stomach scope biopsy - the scope was for another problem, and I asked him to do a celiac test at the same time - and it came back negative, too. However, since he did all the talking, he had no way of knowing that I hadn't been eating any gluten, either... =/

So that test came back negative. And it's *really* something I don't want to do again, if I can help it!

So even though I've been really careful to stay away from all gluten, I know that I *have* been having some, a very small amount, like sometimes I will get a hamburger and take the bun off and eat it, but there could always be bits of bun stuck to it, or even wheat in the meat for all I know; and also I know I get hidden gluten sometimes in things like dextrose... So would that be enough gluten to register on a test, and should I believe that the test was acurate and I do not have celiac disease?

Basically, I just *really* want to know if I have to keep being as strict with my diet as I have been, or if I can go off a bit and have things like spelt bread, or barley malt, etc., etc., you know the deal. :)

If I can help not experimenting with certain foods, I'd certainly like to, because I don't want to experience those symptoms that I used to have again... U_U

Thanks a lot!!

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The amount of gluten recommended for a gluten challenge for valid celiac testing is the equivalent of 3-4 slices of bread per day for a minimum of two to three months. So no, the small amount of gluten you may have been ingesting would not be considered sufficient to give a valid result. However, if you are sensitive to gluten, any small amount of it can cause you harm, can keep a low level of antibodies churning away in your body, even if they are not sufficient for a diagnosis. This is why celiacs do not/should not cheat.

Those of us who choose to go gluten free on our own just have to live with this not knowing, or put ourselves through the gluten challenge, which could still turn out to be a false negative result :rolleyes:

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