Joann, my doctor said he tested for celiac when I had my colonoscopy/endoscopy last month (although I'm not sure how you test for it) and it was negative.
Usually they perform a visual inspection of the small intestine during the endoscopy, looking for gross evidence such as scalloping, and they also take a few biopsies of the intestinal walls to look for microscopic damage to the villi. Unfortunately, there are MANY false negatives with both bloodwork and biopsies for celiac.
The biopsy analogy that I love compares it to taking several 3-inch-square samples from a 250-sq-ft lawn, looking for doggie doo. If you find no doggie doo in your samples, does that mean that the lawn is free of dog stuff? No, of course not! Your intestines are many yards long, and they usually only biopsy a few spots. So if the damage is patchy they won't find anything unless they're really really lucky!!
I tend to have the fewest Crohn's-related symptoms when on a low-residue diet, so I generally avoid a lot of wheat/whole grains. I do probably consume a fair amount of semolina, as pasta is my go-to food when I am not feeling well, and sometimes it is just about the only thing I can eat without my gut revolting.
Even a minuscule amount of gluten (flour dust in the air landing on your salad) can cause as much damage as eating a plate full of pasta, because it's the autoimmune reaction
that causes the damage, not the gluten itself.
If you have a scientific mind, why not perform an experiment? Go completely gluten free for one week, and see how you feel. If you don't feel any better, well, go eat a plate of pasta with my blessings! :)
BTW, they DO make gluten free pasta (out of rice flour or corn flour)....it's not bad! Whole Foods and Trader Joe's carry them, as well as various health food stores, etc. And just so you know, the gluten free diet is recommended for those with Crohn's, and I personally know people with Crohn's, RA, fibro, and even lupus who have had their conditions go into complete remission on the gluten free (or the grain free) diet.
If you do decide to go gluten free, here's a helpful link (it's non-trivial):
Dianna, I have considered fibromyalgia and plan to bring that up when I see a rheumy. And yes, I am trying to prepare myself mentally for a long journey before figuring out what is wrong.
You're actually finding these things out at an early age....I didn't find out about
most of my problems (including the fibro), until I was in my 50s! I certainly hope you don't have a long journey to your diagnosis(ses)!! Dianna has a great idea there about
fibromyalgia, since it seems to go hand-in-hand with many autoimmune disorders.
How could the pred work for awhile and then just stop?
In my experience, if your condition is flaring, you may need to increase the prednisone dosage for a while.
I do hope you feel better soon! I understand your anxiety over your studies...are you writing your dissertation yet? That was truly the MOST stressful period I can remember from my graduate school years.
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.
Post Edited (nasalady) : 10/4/2009 11:29:50 PM (GMT-6)