am I celiac disease? help me.

I have suffered arthritis for 9 months, but it becomes very serious 4 months ago and my whold body joints affected, especially the both knee joints, hip joints and anke joints, I am afraid maybe 3 months later I can not walk anymore. I had all lab test, evreything is fine, but low B12, and a little bit high ferritin. My EGD shows there is increased lymphocyte and blunting villi in intestin, which is typical celiac disease pathological change, but antibody shows negative, now genetic screeing is in process. i try GF diet for two weeks but it did not help, my joint still pain/sore (first time doctor says it is degenerative arthritis, the second time they say it is chrondocalsnosis, now nobody knows) and still losing my weight.  The doctors do not know what to do, even they do not know what happens to me and suggest me to Mayo clinic for diagnosis.

All the sudden happens to me and I do not know where to go. Anyone knows same thing heppen? thanks.

 

Hi jasonhsu,

Razzle is right, of course, about everything posted above. I just wanted to add a couple of points....

First, following a truly gluten free diet is NOT easy; you can't just eat gluten free foods and assume that you are gluten free, because gluten is a very sticky protein molecule that can hide anywhere in your kitchen or dining room.

Did you replace your pots and pans that had any scratches in them? Did you buy a new toaster, new wooden spoons, replace all of your plastic containers and cutting boards? Do you read labels very very carefully? Do you know to avoid processed foods with ingredients such as "modified food starch", "natural flavors", "malt vineger", etc.?

Gluten is in SO many products, including soy sauce and other condiments, many shampoos and soaps, most canned soups and sauces....you can't eat regular oatmeal because it's contaminated with gluten, so you need to buy special gluten free oats if you want oats in your diet. Some celiacs can't eat oats at all (both Razzle and I have that problem) because the protein in oats, called avenin, bothers us too. There are products out there made from oats, such as the Aveeno line of skin creams, soaps, shampoos, etc. (named after avenin!) that you should avoid, since they do not use gluten free oats.

Do you have a pet, such as a dog or cat? If their food has gluten in it (many dog and cat foods do!), then there can be all sorts of cross-contamination issues...you can easily get gluten molecules on your hands and contaminate your cooking or eating surfaces.

Here is a link to a wonderful tutorial on how to go completely gluten free:

glutenfreegoddess.blogspot.com/2006/01/morning-after-diagnosis-that-is.html

So unless you followed all of these strict guidelines you may not have been truly gluten free. A very small amount of gluten is all that's needed to trigger the autoimmune reaction, so you really DO have to be that careful in order to get better!

The second thing I wanted to mention is that there is a condition called refractory sprue....this is very rare, fortunately! Refractory sprue is celiac disease that does NOT improve on a gluten free diet.

Here is a quote from an article on refractory sprue:

"It is interesting to note that in a recent study of patients with "unresponsive" celiac disease, Dr. Joseph Murray and his colleagues found that of 49 patients evaluated, only nine actually had refractory sprue—25 were found to have gluten contamination in their diets. The most common symptoms presented by the patients who truly had refractory sprue were weight loss, steatorrhea and diarrhea, in that order. "

So almost half of the patients in this study had some sort of gluten contamination in their diet or environment! And only 9 out of 49 suspected to have refractory sprue actually had it....which is good news.

So this brings me back to my first point.....I'd bet money that you have gluten contamination somewhere in your diet and/or kitchen environment that is preventing you from getting better!

Please check out that link to the gluten-free tutorial if you have the time, I think it will help!

Good luck to you! Please keep us posted!
JoAnn