Could It Be Celiac?

[Guest]

The blood tests always come out perfect. The doctor never knows what to tell me. He has tested for everything humanly possible. Every visit I am tested. Every visit I am told that he doesn't know, and the symptoms are perplexing.

Since I was 12 years old I have had this sharp pain in my lower left abdomen to my back after eating something that contains gluten. I figured out the pattern when I was 15. My aunt has had celiac disease since she was 16, and my sister has had it since age 10 or 11. Both of them have it bad. I'm 17 years old, and the pain in my side lasts for several hours to many days, accompanied by a headache and nausea, even if I have just one little bite of something containing gluten.

I feel a lot better if I am eating gluten free, no pain at all.

BUT. Strangely, I have been in nonstop pain, been nonstop sick and tired since Tuesday night--when I had a piece of pizza that contained gluten. I usually heal and stop hurting within a day and a half, but this is the 3rd night I've felt like this, even though I have only eaten crackers and soup for the last 3 days (both of which are gluten free, or so they say).

Could this be celiac? If all tests come out normal, and I haven't yet had a camera down my throat, is it still likely to be celiac? Is the last resort to find out an endoscopy?

Thanks in advance for the help.

[eatmeat4good]

You very likely could have Celiac. The tests are inconsistent in terms of being able to positively diagnose Celiac. Many test negative but really have Celiac....it isn't until seriously significant damage has been done to your small intestine that they can test positive in the biopsy. sometimes damage is patchy and that means if they take the biopsy from an area that wasn't damaged...you test negative.

The fact that your reaction to gluten is stronger and you are getting sicker from it is completely consistent with Celiac. Once gluten is out of your system, some people tend to become extremely sensitive to even trace gluten, becoming far sicker than they ever where when eating gluten on a regular basis. The increased sensitivity has something to do with the fact that the antibodies die down when gluten is eliminated and then flare or cascade back when even the least bit of gluten is ingested... There are many many similar stories on this site relating the exact same experience you just had with eating gluten after being gluten free.

You figured it out yourself and you are very wise to listen to your body. You can't eat gluten without feeling sick. Don't worry about whether it is called Gluten Intolerance or Celiac. If you wait to test positive you will run the risk of being gluten sick for a really long time until enough damage has been done that you can test positive. I say be happy you figured it out and spend your energy being on the lookout for trace gluten and avoiding it like the plague. No more pizza slices....it will keep making you sick. Unfortunately Dr.'s are not progressive enough nor smart enough to say that with such a strong family history and poor response to gluten you are likely Celiac even if you do not test positive. But the testing is unreliable and many who have Celiac do not test positive until enough damage has been done.