I'm not sure that I've ever heard of an expert on celiacs disease since there is no medical treatment available. I'm like you that my GI doctor has been totall useless. I went to her, had my blood tested, and the tests came back negative. She kind of gloated and said "see, I told you." When I protested that I was sure of the condition she told me there was nothing more she could do and to find another doctor.
All you have to do to treat this condition is quit eating gluten. If you are not sure what this is consult a dietician. Here are some guidelines. dont eat:
Bread, pasta, ketchup, salad dressing, croutons, beer, oatmeal, breakfast cereal, anything with wheat, barley or rye. If you can do this you will see improvements in about 2 days.
Again these tests are ONLY 60-80% accurate. My son's test was negative also. BUT after an elimination diet (so called by the geneticist we see), he is cured of the ailments he had while eating gluten (like constant vomitting and upset stomach). Spare the money and eat gluten free. Too much money goes to doctors already; don't you think?
Susan, (a licensed nurse)
ANd just so you think you can NEVER have some of your fav gluten filled yummies again...I have been doing some "shopping" and "testing" and found some AWESOME alternatives. I was way bummed at the thought of giving up my beloved pastas...well...I found Gluten Free pasta made with rice flour...and I like it BETTER then the old kind!
Life won't be so bad gluten free....a little more expensive, but do-able!
Hi, I live in NJ too and my dearest friend is one of the best. Her name is Diane Paley and I don't think I should give her phone number online, but if you send me a private email I will try to get you her info. Tjoyce
Hi, I never got back to you with that phone number. Sorry, but wondered how you were making out? My friend is in CA now but if you still want I will tell her to contact you when she returns. She has been very involved with the Celiac organization for many years and while she might have some unothodox ideas, she is very willing to offer all sorts of info and help. Hope you're doing better. Tjoyce
I am only now seeing this but there is a Dr.Green at Columbia Presbyterian Hospital in New York City who is an expert on Celiac Disease. Also Dr.Susan Lewis is his Colleague and she is supposed to be very very good too but there is a long wait before seeing them. Try googling the both names and you will come up with all the information needed.
Hi, I have contacted my local contact. Here is the website for the foundation: http://www.celiac.org/ There is a place where you can look for your local contact there. My gal here locally was fabulous and such a huge help. Best of luck to you..
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