Gi In Florida

[floridanative]

Well unfortunately my Mother went to some horrid GI and he told her that her Celiac panel positive test (ran by pcp) result does NOT mean she has Celiac and that it's very rare - blah blah. Only 1/1000 have it blah blah. When Mother told him according to the Univ. of Chicago Celiac Reserach Center 1 in 100 have it, his response was that's just a difference in opinion. Whaaa??! He wants her to have the endo even though he knows she has been gluten free for over a month! Is there no end to all these idiots??!!!

[moonunit]

Argh! I so feel for you!

Maybe your mother could ask him if NIH's stance matters to him. Here is a link to their consensus statement, which they built to make sure everyone was in agreement on the basics of celiac disease:

Open Original Shared Link

I plan to print this out and give a copy to my soon-to-be ex-doctor, who made similarly uneducated statements and said that Colubmia University's recommendation of the full blood panel for testing was "not necessary" and her medical group's labs didn't even conduct the full panel as policy.

Next time I come across one of these no-celiac-no-matter-what guys, I'll probably say, okay, the sources for my "opinion" are NIH, and the celiac disease research centers at Columbia University, the University of Maryland, and the University of California. What are your sources for people who share your "opinion," and if you feel that all the foremost experts in the United States are collectively wrong, perhaps you had better share your findings with them immediately!

Grrrr.

P.S. -- not sure where in Florida you are, but The Gluten-Free Bible lists Dr. David Borislow in Clearwater as a "celiac-savvy" recommended doctor.

[floridanative]

Thanks but I'm not in FL, only my family is and they are in Tall. where apparently there is NO doctor worth seeing regarding Celiac. When I was looking for a doc for Mother to get tested, no one on here could help so I had to find other forums to post my request. Most every response was the same - there is no decent GI doc in Tall. FL, and if you live there you should either go to Atlanta to see Dr. Rudert or go to J'ville to the Mayo Clinic. Oh well I can only share the truth and after that I'm out of it. Thanks for your link - I'll print and fax that to her.

[moonunit]

Gosh, I'm so sorry to hear that! I wonder if you could try writing to one of the doctors who IS recommended but is too far away and ask THEM whether they know anyone to refer to... how frustrating for you all!

[ms-sillyak-screwed]

1 out of every 200 people have celiac disease!!!!

[floridanative]

Well acutally latest stats are 1/100 have it.

Mother is looking for someone to tell her she doesn't have Celiac. I know she has Celiac (both the bloodwork and tons of symptoms backs me up) but she's over 60 so she can do what she wants. Being sick for so long has made her terribly negative and she has lots of food issues so that doesn't help either. I have to worry about me right now. You can only beat your head against a brick wall for so long. I told her NOT to start the gluten-free diet and then later decide to have a biopsy....but now that is exactly what she's doing. This GI has an agenda to prove she doesn't have Celiac. Can any of you guess what he dx'd her with? You're all correct - IBS!!!!!!!!!!!!! What a brilliant doctor..............................NOT!

[Jnkmnky]

Tell your mother, WE want to speak to her.... (I'm tapping my foot and waiting.... https://www.celiac.com/uploads/emoticons/default_dry.png' alt='<_<'> )

[moonunit]

Not that it's any consolation, but my dad just tried to get an appointment with the Florida "expert" Dr. Borislow and the person answering the phone said he does NOT specialize in celiac disease and has no idea how he got into the book in the first place. She grudgingly took the appointment but didn't really want to. Now I'm wondering how much to trust the results from the visit!

I suppose that's one way to educate doctors, send hundreds of patients their way with no warning... I think I will drop a line to the Gluten-Free Bible people and let them know that one of their endorsed doctors has no interest in celiac disease whatsoever.

Hmmm.

(Why on EARTH do so many doctors seem to have that agenda, anyway? It's like they're victorious and so thrilled to say you don't have it! Seriously, really, anyone in the industry know if they're getting kickbacks from drug companies for refusing to diagnose this disease? I can't see any other reason for them to look like they just won the big game when they give you the IBS brush-off!)

[floridanative]

Puleeeeeeeeze! Don't get me started on the subject of why these idiots are so reluctant to dx people with Celiac. In fairness most docs only know how to write rx's and send you on your way in 8.2 minutes of whatever the average approved time per patient is these days. There is to date no pill for Celiac so therefore they are not up to date on the disease - period. BTW, did you guys know that Dr. Fessano from U of Maryland moved back to his native Naples? He is working on the new Celiac test (involves blood/saliva/urine) which is to replace the biopsy for gold standard dx - yea!!! And a new study of Dr. Fessano's gluten blocker pill is starting a new trial in Italy in the US in July. Do you guess the US trial is based in Maryland?

[tiredofdoctors]

I think that it so SAD. I am amazed the difficulty that appears to be across the country with regard to doctors and their knowledge or lack-thereof with regard to Celiac Disease. Certainly, Louisville, KY is not the mecca of medical knowledge, but even my NEUROLOGIST said, "you have Celiac Disease". We have one particular GI practice that has a "Celiac Specialist" within their ranks. I have spoken with him, he reviewed my biopsy slides one by one, and explained in amazing detail what happens at the cellular level in intestinal villi with Celiac.

My neuro has read Peter Green's book, and continues to call my dx Celiac -- at first, I kept saying, "I don't have Celiac. I only have elevated antigliadin antibodies." He finally said, "Celiac encompasses more than just enteropathy." Can't argue with that anymore!

Maybe y'all should just come down here for awhile -- I'll schedule your appointments, and my DH will drive you there! You can stay at the house (will give me a good reason to REALLY clean!) and you will definitely be fed gluten-free food in a 99.8% gluten-free house (my husband keeps frozen and/or canned stuff to eat just in case!)

[floridanative]

Don't put ideas in our heads Lynne. Before you know it we'll be planning a Celiac party in Louisville!

[tiredofdoctors]

Hey -- my son wants that to happen! He asked me a few weeks ago (right before the post about trying to get together) if I would be upset if he tried to organize a get-together here for all my celiac friends on the board!!! He said that he would prepare all the meals -- he's a great cook -- and he's made himself SO informed on gluten-free cooking! He would love it and so would I! If you ever want to see the MD's here -- you always have a place to stay!

[par18]

Well acutally latest stats are 1/100 have it.

Mother is looking for someone to tell her she doesn't have Celiac. I know she has Celiac (both the bloodwork and tons of symptoms backs me up) but she's over 60 so she can do what she wants. Being sick for so long has made her terribly negative and she has lots of food issues so that doesn't help either. I have to worry about me right now. You can only beat your head against a brick wall for so long. I told her NOT to start the gluten-free diet and then later decide to have a biopsy....but now that is exactly what she's doing. This GI has an agenda to prove she doesn't have Celiac. Can any of you guess what he dx'd her with? You're all correct - IBS!!!!!!!!!!!!! What a brilliant doctor..............................NOT!

IBS stands for "I've Been Scr...d" !

Tom

[ms-sillyak-screwed]

I contacted that Dr. B on the west coast of Florida (a while ago) and I was treated the same way by the girl answering the phone and told me the same thing...

Writing to the book publishers and telling them the info is NOT correct, is a good idea. But unless the book is RE-printed the bad information is still circulating... It's like yesterday I read a label that said "GLUTEN-FREE" and as I kept reading it was filled with barley, and oats. Some newbie will buy it thinking its's safe; and get sick.

Oh, and taking about a trip -- why don't we all go on a trip to Italy and see if we can find out more about our disease? We could get BOB & RUTH'S GLUTEN-FREE GETAWAY to sponser something over there perhaps for an entire month or so, we can get an interperter to help some of us. We can see if we can get a form in front of some of these researchers and doctors...

I keep thinking back to something I read awhile ago about how in the the early 50's the european countries (Italy) were trying to understand celiac disease. They were doing research and on the right track. And they realized it was a huge problem, they educated their doctors. But the USA doctors that came back from (their time in europe) didn't want to admit we have a huge problem in the USA so they went into the DENIAL MODE. Easy enough. They are in bed with farmers and the agriculture department and are totally depentant on one another, in a big way even more so today. And it was around the 60's when JFK was in office (if my history is right) and it has now surfaced that JFK was a Celiac. Then he was killed. And with his death many things were left untold. So perhaps there is some connection why around that time the US government went into the denial mode, put blinders on and ignored the problem. The euro docs know its a problem, the US doc's refuse to wrap-their-tiny-brains-around it.

I guess I just wonder what we can learn from the doctors in Italy???

floridanative -- I know just what you are going through with elders! My heart goes out to you (((HUGS)))

[floridanative]

I guess I just wonder what we can learn from the doctors in Italy???

floridanative -- I know just what you are going through with elders! My heart goes out to you (((HUGS)))

[ms-sillyak-screwed]

I know a month or so is a long time. A week is plenty for some. But what I was thinking is... some of us can rent houses/villas or some type of housing that we can stay a week two or more. Or even do house swaping with Italians. It might be easier for some of us Celiac's that have serious secondary food allergies that have real issues with questionable restaurant to be able to stay in a place we have a kitchen and can cook fresh food.

Our group can set up dates to meet with these docs or researchers, say some of the group can meet one week and others another week and so on. Follow me?

Not only would it be fun, but we might get some media attention, and we can get some of the answers the US docs don't care to know or give us...

floridanative -- Hope you are feeling better! Anyone older then I am (mid 40s) I call elder. [giggle]

[JodyW]

Thanks but I'm not in FL, only my family is and they are in Tall. where apparently there is NO doctor worth seeing regarding Celiac. When I was looking for a doc for Mother to get tested, no one on here could help so I had to find other forums to post my request. Most every response was the same - there is no decent GI doc in Tall. FL, and if you live there you should either go to Atlanta to see Dr. Rudert or go to J'ville to the Mayo Clinic. Oh well I can only share the truth and after that I'm out of it. Thanks for your link - I'll print and fax that to her.

I came across an artical pertaining to malabsorption and one of the

Dr's that participated in the artical was a Dr. Toskes from the University of Fllorida inGainsville. Looked him up and found out he specializes in malabsorption and digestive disease's \s. We see him on Aug.7. I'm sure he can help