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Jen Dex S

Should I Be Tested?

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Hi there everyone. I am completely at a loss as to what's wrong with me, and has been for over a year and a half now. I'm 34, I'm overweight despite eating maybe 1500 calories a day most days - some less, some a tiny bit more. That doesn't sound consistent with Celiac. However, I bleed every time I go to the bathroom, I go to the bathroom at least 6 times a day. They've done colonoscopy and it's not cancer, or anything visible. My blood is thin, and isn't clotting well, and I'm borderline anemic but I am very careful about what I eat. They're trying a hematologist to see if I have a blood disorder, but I am wondering about Celiac. The more I read about it the more I wonder if that isn't a possibility, plus my colorectal doctor suggested it might be, or a clotting disorder. I developed heartburn for the first time ever about 3 months ago, even though I have two kids - usually pregnancy does it to you but not to me. I decided this weekend to go gluten free but I read someone's post here that mentioned you can't do that AND be tested. But I'd really like to feel better, and I feel all prepared to say goodbye to gluten and see if it helps.

My questions to you are:

1) My WBC and leukaphils? I think they're called? are chronically high, for about 3 years - at about 14000. Is that consistent, does anyone know? I've read conflicting things and am unsure.

2) How long did it take you personally to be diagnosed?

3) How soon after going gluten free did you start to feel better?

4) What was the test that diagnosed you?

5) Is it possible to have celiac and not be losing weight - I read most people do, but again, unsure of the veracity of that.

Thanks for any information, and glad to meet you. I'm more of a learner than a knower at this point but looking forward to learning a lot!

- Jen

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It is a misconception that all celiacs are rail thin. There are many of us who are overweight when diagnosed.

Before you go gluten free it is a good idea to at least get a celiac panel done including a total IGA. Those tests do have a high false negative rate but a positive is a positive.

You can go gluten free without testing, we don't require a doctors permission to be gluten free, but if you later decided you want testing you will need to go back on gluten for at least 2 to 3 months before the tests are done.

The time to heal can vary a lot. Some feel much better pretty quickly but for others it can take a bit longer.

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I am still not diagnosed with anything by a medical doctor. My doctor refused to do a biopsy because my blood work was negative. I choose to eat gluten free because no doctor could help me and I needed to feel better. Long story short...I went on the diet felt fantastic and wouldn't go back on the diet for anything!

I used to have to have bloody bowel movements daily as well. As soon as i went gluten-free this went away within three weeks and I have never had one again!

I started feeling better in about 2/3 weeks...however from what I understand this is more common for those gluten intolerant/sensitive and those actually diagnosed with celiac can take much longer. This though varries from person to person and how much damage is done on the inside. Since you went back to eating gluten, it may take you much longer to feel better because you have a lot of healing to do.

I did not loose any weight. From what people say on here it can go either way or no way! Some people loose, some people gain, some stay the same!

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