Celiac symptoms
#26475 - 11/11/03 06:05 AM
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How does one know for sure that it's Celiac disease. I've been tested negative for this disease, but maybe I wasn't eating enough wheat for it to show up. What are the symptoms? I'm going to the gastro specialist on Friday, and would like to know what I should ask him regarding tests. I've been avoiding wheat and gluten for several weeks now, and have noticed a decrease in the gas and bloating.
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Hi there!
Which tests did you have for Celiac...the blood test and/or an upper endoscopy? Were you eating gluten/wheat regularl when the tests were done?
The blood tests AND the upper endoscopy might be negative and you could still have Celiac. The blood tests are much less accurate than the upper endoscopy (the UE is considered the gold standard test for celiac). However, the upper endoscopy is not full-proof.
If you have not been eating gluten, you will need to begin again in order to be tested accurately for Celiac. The tests will come up negative if you don't have enough gluten in you. If you feel better without gluten there's a good chance you have Celiac or some other gluten intolerance. Gluten free food is expensive. If you test positive for Celiac you can receive food discounts from the government I believe. BUT if you feel better being gluten free and you don't want to go through with a test that isn't 100% full proof--I don't blame you!
I finally decided to have an upper endoscopy done. I will have it December 3rd of this year. I am fed up with not knowing for sure--and the foods are quite expensive so I would need the discount. It became worth it to me to know for sure--but that is a personal decision. I am going nuts wondering--and it's much easier to stick with a strict diet if you know you HAVE to!
I hope this helps you a little...if you have any other questions feel free to post them for me! I have been struggling with this question almost a year now myself...so at the very least I have quite a bit of info. on the subject!
Take care, feel good, and keep us posted!
Happy Tuesday! 
Ruchie
P.S. Symptoms include:
Diarrhea, weight loss, constipation, gas, and a host of other autoimmune symptoms. If you want to know more about the symptoms let me know and I'll send you another post 
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Formerly known as Ruchie
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Ruchie, thanks! Yes, anything you can send me, would be appreciated. Can you eat Oat bran? I felt really sick when I ate pancakes made from kamut flour. They told me on the forum that it has gluten... I felt nauseated as if I'd eaten too much fat. That's what I used to get before with fatty foods (even just a slice of avocado would give me colic), so they took my g/b out in January. Before that, I could have had wheat in any form! It's only since the surgery that I've developed this problem. I also can't have any citrus since the surgery. I used to live on oranges!
Thanks again.
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Anything with oat can be problematic. So stay away!
There are celiac webcites:
Celiac.com
delphiforums.org (it might be .com)
csaceliacs.org
CSA is the Celiac Sprue Association. On their webcite they even have a toll free phone number you can call and someone can answer your questions for you!
Let me know how you make out! 
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Formerly known as Ruchie
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Hi, Lilibet,
I tested negative for Celiac (both blood test and endoscopy), but my GI doc says that he believes many people have Celiac and still test negative, for a number of reasons. Or they may be "latent" Celiacs. When I tested negative, I started trying to eat wheat again, but I always end up with bad symptoms (worse IBS, autoimmune issues, etc.). So I decided to just give gluten up for good, despite the test results. It may be that I'm not Celiac, but just have a severe allergy. Either way, gluten is no good for me.
Be careful about hidden gluten--it's in a lot of things that you'd never imagine, especially processed foods. There are a couple of websites that have food databases (brand name stuff) that tell what's okay and what's not. Try www.nowheat.com and www.clubceliac.com (good list of fast foods that are safe). Also, there's a good magazine called "Living Without" that has a lot of good GF recipes and products you can order, plus articles on GF living.
Good luck!
Judithg
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