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CassieGF

Importance Of Testing?

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I was unofficially diagnosed with Celiacs about 4 months ago. For about 3 years now, I have been constantly sick and very bloated, and have had a hard time concentrating in school. I am finally a senior in college, and getting here has been difficult (and taken longer than I had hoped). I saw a doctor almost a year ago who diagnosed me with IBS. This turned out to be false because I was was still feeling the same way. I realized that I really had to figure out what was going on with my body when I went to the bathroom and discovered that I had an almost white, mucusey stool. This seriously scared me, so I decided to go to a doctor that tested my entire body using electodermal screening, and she found that I have leaky gut. Through a series of other tests, she "unoffically" diagnosed me with celiacs. Since then, I have been so careful to not eat gluten, through both ingredients and contamination - which by the way has been AWFUL because of course I LOVE pasta and bread, but really who doesn't? I was gluten intolerant when I was younger so it wasn't that difficult for me to know what I could and could not eat. Since then, I have been able to concentrate in school, my bowels have been normal, and I am no longer bloated. It's been amazing! And I can definitely tell that gluten is not okay in my body because there have been a couple instances where I have gotten sick from eating something I was unaware had gluten or at least came into contact with it.

So... the problem I am having now is should I get a blood test/scope? I have heard that in order for the results to be accurate, gluten has to be present in my system. If this is the case, I'm not sure its worth putting myself through all that pain and fogginess in my head when I know that, at the very least, I am gluten intolerant. So my question is, does gluten have to be in my body for the tests to be accurate? And if so, is it worth eating gluten, which will undoubtedly make me sick, to be officially diagnosed with celiacs?

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Yes gluten has to be in your body.

And not only a little. You have to eat it at the rate of 5 to 6 slices a day for 6 to 8 weeks and you still may not test positive.

Some people opt not to test as the reactions to consuming gluten are too awful to tolerate for that long. You have already tested it by elimination.

I guess it depends how bad you want to change the word gluten intolerant to Celiac.

For me it wasn't worth it. To know I cannot eat gluten is enough. It gets me every time I get CC let alone eating it. I wouldn't do that to my body. But it may be important to you.

Vitamin level testing would be beneficial so you know what you have not been absorbing and you can do something about it.

Others have done the gluten eating for 6 weeks and tested negative. But still became sick when they ate gluten. The tests have something like a 30% false negative rate.


Healing is a matter of time, but it is sometimes also a matter of opportunity.

--Hippocrates

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Reasons to test:

1) You want a letter from your doctor stating celiac.

2) You want to claim gluten free food on your flexible spending account (new laws went into effect for over the counter meds. I don't know how it affects us yet).

3) You want to make sure your employer provides reasonable accomodations for you (Maybe assigning you to the deli instead of the bakery).

4) You want to make sure your college provides reasonable accomodations for you (not forcing you to eat on a cafeteria meal plan or at least making sure it really is gluten free).

5) You want to convince a stubborn pediatrician there is a reason to test your kids for celiac.

6) You think you may be more likely to stick to the gluten free diet if you have an official diagnosis.

7) You want your doctors to beleive you when you say you have celiac/gluten problems, not roll their eyes and lump you into a fad dieter.

Reasons not to test:

1) You are damaging your body during the two months of gluten challenge.

2) Your results might be negative and who would beleive you then?

3) Some people can get a celiac diagnosis from a sympathetic doctor based on response to diet without having to go through a gluten challenge.

4) Good grief, it's gonna hurt!

5) Your grades might suffer while you are on the challenge (although if you wait and choose to do it later, your career might suffer).

6) A gluten free diet does not need doctor's prescription.

There is a decent chance you know as much about celiac disease as your doctor. Spend some time here and you will know more.

7) If you have a stubborn pediatrician, you can change doctors or put them on a gluten-free diet without testing.

8) Would you be prone to cheating if you tested negative?

9) Is a doctor's note worth it?

I was already on gluten when I had my blood test and biopsy. I'm glad I have the papers to prove it. You would have to hold a gun to my head to make me eat gluten now.

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Thank you so much for all your help! I had no idea how much gluten I would have to eat in order for the test to be accurate!! I've decided that for now, I'm just going to assume I have celiacs based on my previous symptoms and how being gluten free makes me feel without officially testing myself. That is enough for now! I feel like I have done a great job at keeping all forms of gluten out of my life and feel no need to cheat, so it just doesn't seem worth it to get tested. I work at a restaurant and they have been awesome at accommodating my new diet, and since I don't live on campus, I don't have to worry about purchasing meal plans. And most importantly, I LOVE how I feel now, and that is good enough for me.

I definitely will be on this website often and am so grateful to have found it! I really did think my life as I knew it was over when I found out I couldn't eat gluten. But hearing that I am not the only one, and people are surviving perfectly and happily without it has been amazing. Plus, I am feeling better than I ever have!

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I opted not to test. I was in school and there was no way I could wreck myself for a couple months. I eat as if I'm celiac, which works really well for me. B)

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Thank you so much for all your help! I had no idea how much gluten I would have to eat in order for the test to be accurate!! I've decided that for now, I'm just going to assume I have celiacs based on my previous symptoms and how being gluten free makes me feel without officially testing myself. That is enough for now! I feel like I have done a great job at keeping all forms of gluten out of my life and feel no need to cheat, so it just doesn't seem worth it to get tested. I work at a restaurant and they have been awesome at accommodating my new diet, and since I don't live on campus, I don't have to worry about purchasing meal plans. And most importantly, I LOVE how I feel now, and that is good enough for me.

I definitely will be on this website often and am so grateful to have found it! I really did think my life as I knew it was over when I found out I couldn't eat gluten. But hearing that I am not the only one, and people are surviving perfectly and happily without it has been amazing. Plus, I am feeling better than I ever have!

Cassie, I just had a negative blood test too, although I've been off gluten for a month. My doctor, who's also a good friend, told me if I need the results to say "celiac" I'd have to go back on gluten, and I just don't feel like poisoning myself and going through all of that to have the lab confirm what I already know. If the gluten-free diet makes you feel better, go with it! :)

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