Didn't know Celiac was a possibility

I went in for a routine check up required by my employer. Everything was going well until he reviewed my labs from my OB/Gyn appointment last month and started asking me about my newly diagnosed case of anemia. I told him I was taking iron as I have extremely heavy periods. He decided that he wanted to order some more labs just to check my iron levels again. He also wanted to check thyroid levels as well.

Today, I get a phone call from his nurse saying that they tested for Celiac and it came back as positive for the diesease. For one, I didn't know we were even considering celiac as a potential issue. For two, while I may have a few Of the symptoms (like fatigue - but who isn't tired when they are working 50-60 hour work weeks, raising 2 kids and training for a 7 day bike race), but all my other lab values are normal (with the exception of the ferritin level).

I don't get an upset stomach based on what I've eaten; no GI issues; nothing that really screams celiac. How often is this misdiagnosed and is it possible to have even if all my other lab values are good? So confused! My only issue is with the heavy periods, but if being on iron is going to help that, where did the possibility of celiac come into play??

I wish Knott were still here ...

I don't have celiac, but you got me curious, and this is the most accessible and apparently accurate summary I found on a quick google. Do you know what antibodies they tested for?

I'm assuming that since an OB/GYN isn't trained to either diagnose or treat autoimmune disorders, that they'll be referring you either to a gastroenterologist or an immunologist. That doctor will be able to answer your questions a lot better than any of us - make a list of your questions so you don't forget any. I personally would not schedule a biopsy before you've had the opportunity to talk it over with the doctor and understand why it's indicated (if it is) and what the potential benefits would be rather than just electing a gluten-free life without a biopsy-confirmed diagnosis - but that's just my personal opinion.

I have celiac. It is very possible to have celiac disease without GI symptoms, in fact it is quite common.

Anemia and osteoporosis/osteopenia are frequent symptoms in females with celiac. Biopsy is no longer considered the "gold standard" of testing.

The National Foundation for Celiac Awareness has some great info on their site.

http://www.celiaccentral.org/

And, a diagnosis of celiac disease is not the end of the world. You can live really well gluten free. :) The main thing for you, as you do not get GI symptoms, would be remembering and being very aware that even the slightest amount of gluten is causing damage. For people like me who do have GI symptoms, it's a quick and painful reminder when we are accidentally "glutened."

Good luck, and feel free to PM me if you'd like.

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Originally Posted by OakLeaf

I wish Knott were still here ...

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She's here :) she says and I quote "It's extremely common for celiac to manifest without "gut" issues. Some people show celiac as a skin rash, migraines, inability to absorb certain nutrients, Sjogren's syndrome, thyroid or pancreatic issues, mouth sores, various cancers .... all that and more without any sign of IBS".

Now I'm off to finish dinner because she's got a bike mechanic class to go to and I have finals to prepare for. :)

It also depends on what blood test they used. My SIL was declared celiac due to a positive blood test and because her mum and aunt are. However she didn't have a colonoscopy.

7 years later while living in Ireland and craving to be able to eat pizza and pasta on a trip to Italy she had the more advanced blood test (Ireland is one the genetic "homes" of this condition) and it turned out she wasn't! The first test apaarently returns a lot of false positives. Apparently a colonoscopy is the only REAL way to confirm it 100%.

Let's just say she was really peeved to been eating gluten free for seven years but pleased she could eat real Italian pizza!

Blood tests are pretty unreliable, small intestine biopsy (not colonoscopy) can give a false negative if they just happen to miss the patch with the flattened villi in the small intestine. If you're one of the lucky people who gets a rash from eating wheat they can biopsy the rash instead. If you have "geographical tongue" which is patches of flattened taste buds that is caused by celiac disease but can't be used as a test. They won't biopsy your tongue.

The only really reliable test is the genetic one.

This week's New England Journal of Medicine has a practice article about differential diagnosis of celiac disease. You MAY be able to access it for free if you download the iPad app (though last I tried, issues didn't post there for free until a week after they were posted on the Web); otherwise, a 24-hour pass is $15, if you're interested.

"Key clinical points" are summarized at the end of the free abstract:

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• Once considered a gastrointestinal disorder that mainly affects white children, celiac disease is now known to affect persons of different ages, races, and ethnic groups, and it may be manifested without any gastrointestinal symptoms.

• Measurement of IgA anti–tissue transglutaminase antibodies is the preferred initial screening test for celiac disease because of its high sensitivity and specificity, but it performs poorly in patients with IgA deficiency (which is more common in patients with celiac disease than in the general population).

• The diagnosis is confirmed by means of upper endoscopy with duodenal biopsy, although recent guidelines suggest that biopsy may not be necessary in selected children with strong clinical and serologic evidence of celiac disease.

• Given the undisputable role of gluten in causing celiac disease enteropathy, the cornerstone of treatment is the implementation of a strict gluten-free diet for life.

• Gluten sensitivity may occur in the absence of celiac disease, and a definitive diagnosis should be made before implementing a lifelong gluten-free diet.

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http://www.nejm.org/action/showImage...113994&iid=f01

My grandmother was misdiagnosed with Celiac for nearly five years, all the while eating gluten free and still having horrible gut issues. Definitely work so an expert. I have Hashimotos disease and eat GF as I am sensitive. As was said earlier, There are so many great options and ways to eat GF and eat well.