Worried

[jolenevw]

Hello there my name is Jolene. Sorry about the last post by the way i really didn't mean to so that.

Here is the thing my Gp sent me to a gasterintestinal (sp) surgeon to have me looked at. I told him a bunch of my symtoms which consist of Abdominal pain. bloating,gas, heartburn, constipation lower back pain, exzema and fatique. He asked me right off the bat if celiac disease runs in my family. One month later he had me in for a colonoscopy and endoscopy. When i awoke from the sedation the nurse had told me the doc figures its celiac disease and she gave me a panphelt to read up on the diease becuase i've never heard of it before. Here is the thing do the docs tell you things if they are not certain? He also took 3 or 4 biopsys.that was last wednesday.

On friday night i was taken to the hospital due to extreme abdominal pain. It was to the point that it hurt to walk stand sit and lay down. When i arrived at the hospital the doc there thought it was heartburn for they gave me a bunch of meds for that i kept telling her it wasn't heartburn. They finally gave me some demerol and pain subsided a little bit. I came home and slept then inlaws showed up to help me because i had only gotten 3 hours sleep and i have little kids at home. Later saturday night My hubby took me in the hospital again because the pain was still there. The doc had asked me if i had ate anything i told him yes, i ate a fair amoumt of gluten on friday and thats when the pain started. I also informed him the the surgeon thinks i have celiac disease. He did a x-ray of my belly gave me a shot of demerol and sent some home with me.

The pain has since eased off and i also haven't had any gluten in about 4 days now.

Do you figure there is a good chance i had celiac disease? Should i continue with gluten until i see the surgeon or stop it? I'm very confussed about this whole because it seemed like a big bomb was droped on me. I'm sure all of you know how it feels though

Anyhow any insight would be apperciated.

Thanks Jolene

[jknnej]

I'm assuming a couple of things: first, you haven't gotten your biopsy results yet, and second, that they tested you for other possible problems, like pancreatitis, appendicitis, etc...all the common things that would put you in that much pain. Make sure it's nothing serious before you proceed with any advice from us!!!

GI doctors can sometimes see signs of Celiac with the naked eye, but other than that, you have to wait for the biopsy results to find out. However, since you have had a biopsy already when you were eating gluten, you are all clear to start gluten-free IF YOU WISH. After all, you can be gluten-free whether you have celiac disease or not; if it makes you feel better, go for it!!! Also, some people don't have Celiac but they are intolerant to gluten. I personally think this is my case, my dr. thinks I do NOT have celiac disease but I am gluten free and happier for it!!

Most doctors will NOT tell you you have celiac disease unless they are sure. All of my doctors refrain from even speculating until they have some test results to look at...did he ever take your blood? He should have done that as well. If he didn't, don't go gluten-free until he draws your blood.....there are Celiac blood panels that can tell the other half of the story...so..

If you had blood work and endoscopy already you can be gluten-free...if you didn't have blood work, don't go gluten-free yet...insist upon a blood test...then you can go gluten-free after that test.

I hope you are feeling better and make sure to rule out other conditions that would put you in pain like that as well.

Take care,

Jenn

[KaitiUSA]

Did you have blood tests done? And throughout the testing you had done you were on gluten correct? Otherwise it can make results false. A biopsy in itself is good for a diagnosis if there is damage but the problem is you may not have any damage or you may have sporadic damage so it may miss a diagnosis.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

That is the full celiac panel. The most important test is the tTG(this will be taking the place of biopsies in the near future) The EMA and total serum IgA are also good tests

The IgG and IgA are unreliable alone and should not be done alone because that would not be enough to rule celiac in or out.

It also is a possibility that you may just be gluten intolerant and not have celiac yet. If you have a gluten intolerance and continue to eat gluten you may develop celiac though.

There are many symptoms that can come with celiac and there are many complications that can arise from undiagnosed celiac so make sure they also check for any other problems as well.

Good luck

[jolenevw]

I would like to thank you all for posting. The docs have ruled everthing thing else out., as for the health problems that is. They haven't done the blood work that i am aware of. Maybe i'll ask my gp to run them, i see her tomorrow.I guess the surgeon figures it looked like celiac disease thats why he went ahead and did the biopyes.I guess he seem some damage on my small intestine. I won't know the defenat diagnosis for another couple weeks. Thanks once again for your quick replies.

Jolene

[julie5914]

Did they check your gall bladder?

[jolenevw]

My gallbladder was removed almost 3 years ago now. I wasn't even aware that i needed it removed until i was in emergency surgery.

[William Dickey, PhD, MD]

There are abnormalities due to celiac disease that clued-in docs can actually see down the endoscope- scalloped folds in the duodenum, loss of folds, "mosaic" or cobblestone pattern. If they are obvious enough, the doc can diagnose celiac disease then and there, though will still take biopsies for confirmation.

Some nice photos at:

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