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Should I Get Diagnosed?

TeganGF

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TeganGF Newbie
TeganGF
Posted

Hello everyone,

I need some advice, as I do not know anyone with celiac...

I have always had what I thought was a sensitive stomach. I never knew what would trigger it, but I knew one thing was dairy. When I was about 11, I had a flu shot and I had a reaction for almost a year. I would get hives all over my body and get swollen. I had an allergy test done and they said I was allergic to dairy, eggs, and wheat. My parents said I had always been able to eat those things and they took me to a new doctor who put me on an allergy med to stop the reaction. Since then, I am now 27, I have always gotten swollen hands and random hives on my body and face.

When I was 20, I was hospitalized for 3 days for a stomach infection (more specifically my cecum) and they said they didn't know what caused it. Then about 6 months ago, I had bad pains and started throwing up. I went to the hospital and they said I had ovarian cysts and colitis. THey gave me medicine for it and I followed up with my OBGYN. Then about 2 weeks later after I finished the medicine, my stomach got swollen again and I was having shooting pains. I was sent to a GI doc. By this point, I had basically stopped eating because I felt so bad. I lost 15 pounds in 4 weeks. From my past he suspected Chrohns. I had an endoscopy and colonoscopy. I was told I had inflammation of my small intestine and a small hiatal hernia. They also took a biopsy of my small intestine to test for celiac.

I did not hear about my results for 2 more weeks because my doc when on vacation. I had still not been eating anything. When he came back, he said the results came back inconclusive and he would do a blood test. Another 2 weeks passed before that and I still hadn't been eating much of anything. My test results came back fine. He said I had IBS and wanted to put me on a medication that I take 4 times a day and causes weight gain. I said I would prefer to fix it with diet and he said it wouldn't help. I refused and left.

I went gluten free and the shooting pains stopped. I was still swollen though and I also cut out dairy. SInce I have done this, I feel great. I also have not had any hives or swollen hands. My ovarian cysts I was getting monthly and have subsided (although I was put on new birth control pills). After reading more about celiac and some of the related symptons that I have had (teeth enamel problems, ovarian problems, lactose, arthritus, etc.), I feel I may have celiac.

I am already doing a gluten free diet, so I wasn't sure if it was important for me to get diagnosed? What do you think??? Please help!

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ravenwoodglass Mentor
ravenwoodglass
Posted

You could be celiac but if you have been gluten free or gluten light that will cause a false negative. Seeing a remission of symptoms is fairly diagnostic in itself but it you want a doctors official diagnosis then you will need to go back to eating gluten at least for 3 months or so for testing.

If adding gluten back in causes the symptoms to reoccur then you do have your answer. While we don't need a doctors permission to be gluten free there are times when it can be helpful for some.

You may want to go back to your GI and tell him of your recovery on the diet. Ask him if he wants you to do a gluten challenge and then if symptoms return tell him right away and don't down play the symptoms if they are severe. There is a false negative rate of 20 to 30% with testing even on a full gluten diet. If your doctor is aware of this he may give you an offical diagnosis based on your reaction to adding gluten back in.

nora-n Rookie
nora-n
Posted

Some people who had gone gluten free order a private test with enterolab.com as their tests can pick up the antibodies for a long time after going gluten free.

But they cannot diagnose celiac per se.

Just gluten sensitivity,and casein and soy intolerance (which may be huge problems for some too)

Roda Rising Star
Roda
Posted

The swelling and hives definately could be related to your wheat allergy. You also could have celiac also. As far as the allergy you should avoid the wheat. You don't want to chance having a worse reaction. If you are celiac or gluten intolerent you need to avoid in addition to wheat, rye and barley also. Some people are sensitive to gluten free oats too.

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