Could It Be?

[i heart baguettes]

Hey everyone,

I think I might have Celiac (obviously!) Here are my symptoms:

- Very painful, chronic C and occasionally D

- Pain after eating

- Muscle weakness and coordination problems

- Very sore lower back/hips/clavicle and shoulders, sometimes to the point it's difficult to walk

- Weight loss of about 90 pounds in two years (Used to be pretty fat to say the least, am now a normal weight)

- Low iron and protein levels

- Pallor/dark circles/brittle hair and nails

- ADHD/depression/insomnia - Medication never helped and if anything made it worse, I'm off it now and with therapy and good friends around, the depression's gone with the exception of a few crappy days here and there.

- And to save the grossest for last, I had unexplained blood in my urine. TMI, I'm sorry!

Basically, in the last few months, I've decided to get checked out because I've had some of the worst stomach pain I've ever had. I've been tested for ulcers, cysts, and have had x-rays of my stomach and GI which were all negative. I did an ELISA test which showed that my only food issues were almonds (which I barely eat anyway) and wheat which led to a Celiac blood test, but this turned out negative as well ... I don't know whether or not to keep pursuing it, gluten and dairy definitely cause much more pain than any other food, especially gluten, and I felt a little better after I'd been off gluten for a week or so. I have friends with celiac disease that seem to think this is it too, but I'm embarrassed to push it on my doctor! I've just had so many things turn out negative that I don't want to seem like a faker. I just don't think it's a coincidence that gluten hurts so much.

So, here you go. Does it sound like Celiac to you guys, and if not, what else could it be? What steps should I take next? Has anyone been identified as sensitive to gluten and wheat on an allergy test but had negative bloodwork for Celiac? I'm just confused and frustrated at this point, and any and all advice would be appreciated.

[eatmeat4good]

Many people do not test positive on blood tests for Celiac.

Yet they react violently or become chronically ill from eating gluten.

Don't push it on your Dr. Just push the gluten off of your plate.

You can do a strict gluten free trial and see if it resolves any of your symptoms.

Everything you list sounds suspiciously like Celiac.

It could also be Gluten Intolerance which there is no test for.

Wow. So many people test negative...I think there are several posts like yours every single day. Yet they know they do better without gluten.

You have a lot of Celiac symptoms. It's worth a try doing the diet.

The blood tests nor the biopsy are very reliably diagnostic. But gluten elimination and challenge is 100% diagnostic.

See what symptoms disappear in a 3 month trial. Then you know if it is likely to be something else or not.

Welcome to the board!

[mushroom]

It may not be celiac, because that requires that you meet a specific set of criteria and pass very specific blood and biopsy tests, but it certainly sounds like gluten intolerance which exists outside celiac disease, gives the same kind of symptoms, and for which there is no specific test other than the gluten free diet. Scientists are working (a little bit) on trying to figure out why some people test negative but still respond to the gluten free diet. Maybe we will know in our lifetimes??