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Old 06-25-2008, 08:09 PM   #1
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Anyone know about Celiacs?

Hi guys. I have been having tons of medical issues and am trying to find out what is wrong with me. Today I actually ended up in the ER. Here is my story and symptoms-

Over the past yrs I have gotten stabbing pains 3 inches to the left of my belly button that spreads. It comes and goes, ended me up in the ER 5yrs ago as it was so bad. Have had my liver, gallbladder, panc., kidneys all tested. Last month it hit me but the pain was dull, left for about a week. Then this am I had such bad pain there that spread across my lower stomach that I could not move. I have never had such a pain in my life. 10 min later the pain went down, but came back again 15 min later. They ran all stomach tests on me, did a RA, Lupus, CBC and liver blood test-all was fine. I have a history of GERD and do get gas a lot

Now onto other symptoms-

-Dizzy spells
-Fatigue
-Joint pain, and A LOT of joint cracking noises
-Travel pains in my bones (ie-ankle, then an hour later my right foot..including my toes, tail bone, spine)
-Some shooting pains in my body

Finally, my toes get "stuck" often, like a charlie horse that wont get relieved.

I have been under a ton of stress lately (dad JUST dx w terminal pc-is declining rapidly)

Can any please give me feedback? I wont get additional labs back for a few days and need my mind put at ease that its not something like bone cancer.

 
Old 06-25-2008, 08:44 PM   #2
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Re: Anyone know about Celiacs?

"Finally, my toes get "stuck" often, like a charlie horse that wont get relieved."

That's called tetany or carpopedal spasm, my mother had it. It's a sign of calcium and/or magnesium deficiency. Malabsorption of calcium, B-12 and fat soluble vitamins (A, D, E + K) is a red flag for Celiac Disease. Osteopenia (the precursor to osteoporosis) is common and may explain some of the bone pain. If your Celiac blood panel is positive, you might want to get a DEXA scan.

The blood tests for Celiac, the "Celiac Panel":
EMA (Immunoglobulin A anti-endomysium antibodies)
AGA (IgA anti-gliadin antibodies)
AGG (IgG anti-gliadin antibodies)
tTGA (IgA anti-tissue transglutaminase)

With all your symptoms I think it'd be worth it to have the blood tests done. Don't go gluten free until after the tests though - without the presence of gluten the tests will be negative even if you have Celiac.

Good luck!

 
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Old 06-25-2008, 09:51 PM   #3
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Re: Anyone know about Celiacs?

Thanks for your response, my dr did do the celiac test and hopefully I will hear tomorrow.

Does this cause random bone and joint pain? My joints have been popping a lot too and I have had major brain fog.

Would my complete blood count labs have shown anything or is that just cell count?

Thanks again....

 
Old 06-26-2008, 10:34 AM   #4
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Re: Anyone know about Celiacs?

Oops, I went Gluten free for 6 days before this morning's Celiac Blood Panel Test... My Dr never told me that! Now what?!

 
Old 06-27-2008, 10:06 PM   #5
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Re: Anyone know about Celiacs?

The blood tests are looking for antibodies, parts of your immune system, they wouldn't show in regular blood counts. Brain fog and bone pain/arthritic changes are common symptoms. Some other common symptoms are fatigue, an itchy skin rash, tingling/numbness, mouth sores, infertility, migraine, seizures, depression, irritability and thinning tooth enamel.

There are a few people who have alot of symptoms but most Celiacs only have a few symptoms. "Silent Celiac" is when there are NO symptoms until something catastrophic happens, like intestinal cancer. That happened to my grandfather.

If you have active Celiac Disease you may be at greater risk for several disorders; type 1 diabetes, thyroid disease, certain types of cancer and liver disease, among others.

Alan - I don't think six days will hurt the panel. Mention it to your doctor though, he might want to retest.

The only proof positive diagnosis for Celiac Disease is a small bowel biopsy taken with an endoscope. It's not as bad as it sounds! Have'em check for H.Pylori while they're in there. And make sure they take more than 6 individual biopsies. Celiac is hard to detect, the damage is patchy and cannot be seen with the naked eye. They need to take a bunch of samples from different areas in the small intestine to catch it.

[url]http://digestive.niddk.nih.gov/ddiseases/pubs/upperendoscopy/[/url]

[url]http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/[/url]

 
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Old 06-28-2008, 12:34 AM   #6
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Re: Anyone know about Celiacs?

THANKS! AuntieLeela

I had the test Thursday morning, and the lab said they have to send it out for testing, so I will find out the result Monday or Tuesday.

I had upper endoscope & colonoscopy done 3 years ago for H. Pylori, and the procedure really was nothing.

Since I have gone gluten free, I felt much better. The daytime fatigue is gone, and I wake up more energized. Today out of curiosity/temptation, I ate 1/4 of a sugar covered donuts. Will see what happens.

 
Old 06-29-2008, 12:00 PM   #7
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Re: Anyone know about Celiacs?

"Today out of curiosity/temptation, I ate 1/4 of a sugar covered donuts. Will see what happens."


Heh heh heh . . .


The longer you are gluten free the stronger your reaction will be. This isn't true for all Celiacs but most. My first year GF, if I made a mistake, not too much happened. At about a year and a half I accidentally drank a chocolate soy milk I thought was GF but actually wheat malt and barley malt were the third and fourth ingredients . . . I have never been so sick in all my life.

It felt like I had been hit by a truck - repeatedly. It lasted two weeks, the second week was mainly exhaustion from the first. My mother, who also has Celiac, always said about the GF diet, "There's nothing like a little negative reenforcement". She wasn't kidding.

Health food stores and whole food groceries sell GF donuts, if you find yourself havin' a craving.

Last edited by AuntieLeela; 06-29-2008 at 12:02 PM.

 
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