I just wanted to share with all of you that I have found a great pediatric GI specialist. He is very knowledgeable and up to date on Celiac Disease. His name is Dr. Roberto Gugig and he is at Children's Hospital of Central California Gastroenterology Department in Madera, just to the North of Fresno.

When I took my kids to him today he was already prepared to order the tests I was going to ask for. I didn't even have to ask. You see, I wanted the blood tests redone, and the gene test ordered, before even conscidering a biopsy. Well this guys standard practice when looking for celiac disease is to order new blood tests, including the total serum IgA level, and the gene test, and he ONLY uses Promethius Labs. He said that many of the other labs use pig tTg when doing the Tissue Transglutiminase test for celiac disease, and that is not reliable. You have to use Human tTg for the test to be accurate. And Promethius does this. And most doctor never check the serum IgA level, which basically invalidates the test results. He said that if it were his child who he were testing that these were the tests he would order. He was glad that I was diagnosed by the gene test, and was as upset about my struggle to get a diagnosis for myself. He is intent on finding out for sure if my children have celiac disease or not, since he would not want to put someone who doesn't have celiac disease on a gluten-free diet forever, nor would he want to let a child go undiagnosed. This is why he starts with the gene test, which is exactly how I would treat a patient if I were a doctor! Many of you may remember me saying that in my opinion the gene test should be done first! It is a better screening method. Well I was so happy to find a doctor that shares that opinion. It was a major answer to my prayers.

I'll let you guys know how their test come out.
And I only have one more week before my biopsy, and then NO MORE GLUTEN, EVER!

God bless,
Mariann

Wow, Mariann, that is SOOO wonderful to hear! I'm so glad your kids are in such competent hands!

Good luck with your biopsy, too--I hope you get to thumb your nose in your uneducated doctor's face!

Have a great day!

You must feel so much better that you found a MD that will listen to you.
I hope things get better, and good luck on your scope.
eileen

Thank you Sarah and Eileen,

I do feel so much better about having a good doctor for my kids!
This is the first time I totally agree with the GI doctor on everything inregards to the chosen course of action. And I am glad that I have my diagnosis to help. He said if we did not have proof of a family history he would probably be testing for lactose, fructose and sucrose intolerance before gluten, but due to the family history he is looking for that first. So if they do have it we will find out sooner. If they don't have the gene, he said he will test for the other intolerances. He is also checking my 7 year old for Inflamatory Bowel Disease (by blood test through Promethius Labs) and he is planning on doing a bowel (x-ray after the tests come back) and referring him to an infectious disease specialist due to his other health problems and my 4 yar old is going to get a stomach x-ray since she has some occasional vomiting, just to check for any possible abnormalities. This is the more from one doctor than from all the others put together! And he does not like to do any invasive procedures on kids unless absolutely necessary. He also doesn't like to waste time. There is no, "let's wait a month or so and see how he's doing" sort of thing. He want to know now what is wrong and fix it as quickly as possible. We are so totally on the same page.

God bless,
Mariann

6 more days til the biopsy! Yeah, it is almost over!

Wow I wish I had access to a Dr. like this for my daughter. We live in Las Vegas, and have to deal with our crappy network of DR. through our insurance. Keep us posted, how did all the testing come out on your children?


Bette

My doctor at Stanford california is also amazing! He actually comes to our ROCK meetings a couple times a year to make sure he knows everything about it he can! He tests almost all the kids who come into him for celiac, just in case! He is so amazing, and he refers newly diagnosed patients to my family because he knows that we have delt with it for a long time, and he knows that we can help them more than he can.

Wow, a couple of doctors that have a clue. Sure aren't any where I live. Maybe there is hope after all.

My Dr. is also amazing--he's in the Celiac Disease Program at Columbia...highly recommended, but I'm trying to keep this brief, since I'm postin gin a central california topic and he's on the other side of the states

We see Dr Jami at the same hospital. I wish I could get in to see yours! Maybe I will ask for a second opinion. Could you PM me with his phone number? We just saw Dr Jami and I wasn't impressed with what he had to say. And of course did not offer to do any tests ...just wanted to do the biopsy.

Sure--I sent you his contact info. with a "review" I did for another group on him

Oh thanks, but I ment the hospital in Central California. I do really thank you for the info though. And I have called the office there to see if I could get a second opinion. I am suppost to hear back next week.

Thanks again