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Is A Blood Test Enough?

melissanicole

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melissanicole Newbie
melissanicole
Posted

Hi Everyone

I have just recently had blood tests to see if I am celiac. My doctor told me that the tests came back and that my blood showed that I pretty much for sure have celiac. Shen then told me that I should still have a endoscopy (i think that is the name...the one where they stick the tube down your throat.) just to make sure.

I am just wondering what the benefits are to doing further testing? My doctor has referred me to a gastrointologist (i know i messed up that spelling) but is unable to give me any idea of when i might get in. The specialist is supposed to be in touch with me to let me know when my appointment is but it has been a month since i have been referred. I know that is not actually that long, but now that i have an idea of what might me wrong, i am impatient to start the diet and feel better. On top of the digestive issues, being anemic, aches and pains, and general tiredness, I have also been dealing with syptoms similar to a Urinary Tract Infection for close to a year, my husband and I have barely been able to have sex because I am in so much pain afterwards. My gynocologist is the one who first suggested celiac diesease, and after my blood tests came back, sounds quite confident that the gluten free diet will also get rid of this pain after sex.

As I have been waiting, I am finding it very tough to keep eating gluten, knowing that it is most likely causing my symptoms. I was just wondering if anyone else has been in a similar experience and if you guys think that it is important to get further testing?

Thanks for any thoughts you may have on this

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ravenwoodglass Mentor
ravenwoodglass
Posted

The choice to wait and get an endo to see how much damage is done is up to you. Postive blood tests are pretty conclusive but many doctors still demand a endo for an 'official' diagnosis. One problem with this is that you need to keep eating gluten until the tests are done, another is that there is a chance of a false negative even with a full gluten diet. Some folks find it hard to be compliant with the diet without a GI telling them they have celiac. For others the positive blood tests are enough, especially when combined with relief from the diet. The choice to wait is up to you, you don't really need a doctors permission to eat gluten free. Also your GP may give you the diagnosis with just blood and recovery on the diet, some will some won't. If you really want to wait on the endo you could call the GI's office and ask to be put on the cancellation list and see if you can get in sooner.

nmlove Contributor
nmlove
Posted

The choice is yours. We opted for the endo on our first son (4 years). He had positive bloodwork but since we had no history of celiac in either family and a small chance it could not be celiac disease, we went with it. If he had been negative, he still would have to do a gluten-free trial at some point. But if it was positive there was no wishy-washiness about it. When our second son came up with positive blood work we opted no endo because of family history and the GI doc willing to treat and diagnosis him without doing it.

Good luck - hope you get back to health soon!

Jean'sBrainonGluten Newbie
Jean'sBrainonGluten
Posted

Your blood test results are quite conclusive and specific. I know it's painful to feel awful and not be able to stop eating something you suspect is making you sick. I have to confess that I went gluten free seven years ago after an elimination diet but no formal diagnosis from a doctor because I felt awful. For a couple years I was fairly vigilant but after that it got really hard because I didn't have a formal diagnosis and I was surrounded by gluten yummies that my family ate and I didn't keep up with the celiac forums and learn what I needed about cross contamination so I was being glutened in small ways very often .....fastforward to seven years of only knowingly eating gluten once a month..... the antibodies have been attacking my brain and I had symptoms of a brain tumor. Now that I have a brain scan with spots on it I will be carrying that around to keep up my motivation when I start to feel better....

So my advice is to look closely at yourself and your family. My immediate family is supportive but the extended has several people who think I am being a drama queen. I got tired of having to be so careful eating with them or eating out.....

If you stop the gluten now will you have enough evidence to convince yourself and your family and to assert with endless restaurant staff? Can you call the endo or your insurance and speed the process along? Actually, if you have trouble advocating for yourself in this process you are likely to have trouble advocating for yourself in getting gluten free food.....

You are worth it, you health and your life are worth it..... decide how much evidence you need to be able to stand firm about getting the medical treatment or food that you require to live and function.

You are worth it.

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