High Blood Test

[Starting to live withot]

I have been having a lot of different symptoms for a long time. I started getting sores in my mouth and bumps on my skin, all over. I finally was sent to a dermatogist who ran a celiac blood test.

I can't remeber the results except everything was very high out of the norm. I went home and started a gluten free diet for 4 days I feel better all ready. I don't see a gastro. Dr. until Aug. the Dr. said definitly don't start a gluten free diet until then. This seems horrible that I have to wait so long to feel better. Has anyone one else experienced this.

[T.H.]

Basically, here's what the issue will be.

If you wish to get further testing, they will usually perform an endoscopy, take a biopsy, and confirm celiac disease or say that it is negative and it isn't celiac disease. The biopsy won't test positive unless you are on gluten.

That said, if it tests positive, you will be told to do exactly what you are doing now: go gluten free. Nothing else, except it might be easier to get them to test you for vitamin deficiencies with a diagnosis.

If you are diagnosed, there is a medical discharge from the military if you are in the states. There are some medical benefits in the UK, I believe.

If you have a negative biopsy, studies are showing a number of people with positive blood tests and negative biopsies are often having symptoms continue for years, and then later they end up with positive blood tests AND biopsies, after much more damage has been done. So many, many people here try the diet no matter what the endoscopy says.

There is also gluten intolerance that does not test as celiac disease at all, but still causes symptoms. There are no tests for this at the moment.

So in the end, it's going to come down to this: you feel better eating gluten free. Are you going to continue this diet? If yes...do you need a diagnosis and a doctor to approve of this, or are you okay doing it on your own no matter what is discovered?

There are a lot of people here who have decided not to continue gluten and to stick with what helped them. There are a lot of doctors who will diagnose based on the blood tests alone. If there are any other issues OTHER than celiac disease that are an issue, going gluten free won't make a jot of difference in detecting them, and so won't interfere with other tests.

And going back on gluten after you're gluten free is often much worse, with worse symptoms, so if you DO want to stay on gluten and get tested by the GI, you want to get back on the gluten ASAP.

If you don't want to continue gluten, I'd keep a food journal, record how you feel on the diet, and then discuss it with the doctor.

As it might be clear, I'm not really big on doctors asking us to continue the diet. Considering your blood tests, to me it seems like it's doctors asking us to stay on something they know is hurting us, just for the sake of an extra test that won't change anything about how we act, because we've already made the change. It always strikes me as opposed to the whole 'do no harm' credo. So...I'm a little biased, admittedly.

Hopefully there will be more opinions so you can get a balanced look at both sides. :-)

[Mummyto3]

When my daughters bloods came back high last month, we were told to keep her on gluten until she's had the biopsy. That was done yesterday. She will go gluten free from next weeek or this weekend, I want her to just have what she wants before starting her new lifestyle. In the UK, if you get pos results with the biopsy you get food on perscription, so it's well worth it for us, as food is expensive for gluten free people.