What did your Dr say about Dr Fine's Tests?

thedell19 · Post by **thedell19** » Tue May 16, 2006 5:15 pm

My doctor said he would not rely too much on Dr Fine's tests because fecal tests are inaccurate. What did your GIs say?

harvest_table · Post by **harvest_table** » Tue May 16, 2006 6:06 pm

I've not had Dr. Fines testing done, however attempted a conversation with my GI a year ago about Fine and stool testing. He blew me off and insisted that I was not gluten intolerant because my biopsy results were negative for celiac. BRICK WALL

I saw the same GI yesterday and reminded him that I'm GF and controling my MC symptoms without meds- he then suggested that I may have gone into spontanious remission. Sadly, he had no interest in discussing it further. BRICK WALL

Hopefully, Dr. Fine will publish his findings soon (I thought it might be this year) and then perhaps he will get the respect he deserves, particularly from the medical community.

Love,
Joanna

thedell19 · Post by **thedell19** » Tue May 16, 2006 6:10 pm

Yeah I got a brick wall so to speak as well. I was well disappointed.

grannyh · Post by **grannyh** » Wed May 17, 2006 3:49 am

Over the last 3+ years Ihave mentioned Dr. Fine to at least half a dozen doctors.. GI and general practice..none had ever heard of him and when I tried to explain they more or less considered him to be some kind of crank... When you aren't published you can forget being taken seriously.

Doesn't mean much.. nuts get published and hailed as geniuses for years.. I figure our own personal experience as to what works for us is all that is really important in the long run..
grannyh

barbaranoela · Post by **barbaranoela** » Wed May 17, 2006 6:09 am

my .02 cents worth---of Dr. Fine to all my Dr.s

The only comments on Fine was either---*WHO?* and Granny when I told them about Fine;s testing etc., they thought the same---
a crank!!!

Xactly---own Xperience is the *tell-all* BTW---I never did his testing--

Barbara

Polly · Post by **Polly** » Wed May 17, 2006 6:41 am

Hi Terps and all,

I found Dr. Fine on the internet when my GI doc recommended that I start prednisone because asacol didn't work. There was NO WAY I was going to take prednisone. Anyway, thank God for the internet. I (and many of us here) would still be suffering with MC if not for learning about Dr. Fine's discovery of the role of food intolerances in MC.

My GI doc is unique in that she does have an open mind. Initially she was somewhat skeptical, but now that she sees I am symptom-free after 4 years of the diet, she has become a believer. She now suggests to her patients that diet may be a factor and suggests eliminating the common triggers.

I would ask your doc for the evidence that fecal tests are not accurate. My understanding is that they are more accurate than blood tests in the case of gluten - they pick up gluten sensitivity much earlier.

Dr. Fine is board-certified in both Internal Medicine and Gastroenterology and has published more than 30 research articles in prestigious journals like "Gastroenterology" and the "American Journal of Gastroenterology"; however, he has not yet published his most recent research on the relationship of gluten and other food intolerances to MC. I think this is because he and his services have been in such demand that he has not had adequate time to devote to writing. At least this is what I think based on what he has shared with me. First and foremost he cares about the patient and is committed to helping people get well. That he why he still answers many of his emails personally.

But it is SO important to get that info out there to the practicing docs. Even once it is available, it may take years (probably) to become standard practice. For some reason the specialists (like GIs) seem to have more closed minds that the generalists like the family doc. Look how many GI docs poo-poo (no pun intended) diet even when we tell them that we are now well. They will even advise us to go back to eating gluten. Clueless!!!

IMHO, the egos of specialists are bigger than the generalists. One of the reasons people go into a specialty is because it is a smaller body of info and one can aspire to know everything about the field....to be an expert. So they do not appreciate the patient challenging their knowledge.....or knowing about a treatment that they don't. Generalists, on the other hand, have a more holistic approach and seem to realize that there are many things they don't know about......and are therefore more interested in learning from their patients.

Whew, Terps! You got me on my soapbox, and so early in the morning!

Love,

Polly

Post by **tex** » Wed May 17, 2006 8:19 am

Polly,

That was an excellent explaination of why specialists tend to be more closed-minded than generalists. I couldn't agree more.

I'd like to add that not only can gliadin, (gluten), antibodies be detected in stool samples at a much earlier stage in a patients disease development than with the old-fashioned blood tests, but they can also be detected much longer, after a GF diet is adopted. It's not rocket science--the antibodies are going to be most prevalent where they are created, and they are not created in the blood.

Love,
Wayne

CAMary · Post by **CAMary** » Wed May 17, 2006 10:22 am

Pretty much the same as everyone else - he said stool testing "didn't make sense" but then when I explained at my last visit that I'd been able to drop the Asacol as long as I avoided gluten - he became curious - ordered the blood test for Celiac (I threw the lab slip away - I knew that 2 years after the fact, the result would be worthless!).

He said I didn't need to come back unless I had problems - that was in 2003. I guess I'll go back in 2010 for my 10-year follow-up colonoscopy - we'll see what he thinks then

I also wonder why GI's preach "Diet has nothing to do with this - eat anything you want" when it is a condition of the digestive tract?? Hello?!?That doesn't even sound logical!

Mary

kate_ce1995 · Post by **kate_ce1995** » Wed May 17, 2006 10:39 am

CAMary wrote: I also wonder why GI's preach "Diet has nothing to do with this - eat anything you want" when it is a condition of the digestive tract?? Hello?!?That doesn't even sound logical!

Mary

This may be the most profound thing I've read/heard in a while! I think we should strive to get this into the GI doc 101 course in med school!

Katy

Tessa · Post by **Tessa** » Wed May 17, 2006 10:58 am

Hi mis queridos amigos

I agree with all your comments.
Polly your explanation about specialists is excellent.

I thought you could find it interesting knowing about the reaction to Dr. Fine´s findings and tests here in Spain.

I have tried my best (and continue working on it) to spread his tests among those who have autoimmune diseases, above all Crohn, Colitis and those who suspect having celiac disease but have no diagnosis yet.

Most of you know that I knew Dr. Fine thanks to you. I had MC and was unable to cope with it. Hopeless and taking a lot of drugs with no positive results, I was feeling worse... You recommended to follow his tests or start the GF diet. I made the tests from Spain and the results showed I am gluten and casein intolerant. Therefore, Dr. Fine recommended to stop eating gluten, casein and all kind of dairy. Which I did.

Nowadays, I do not have to take any drug for MC and gluten and casein intolerances are under control.

I have to add that I mentioned Dr. Fine´s tests to the previous Digestive Specialist I had. He was completely skeptical and laughed asking who knew Dr. Fine in the US? Adding I should not trust his Lab. cause they would only be trying to get my money for nothing... According to your explanation, Polly, I would say his ego was very, very big... And was angry because another person could know more about MC and Celiac, etc.

Thanks God I was able to change specialist. I am pretty lucky, cause after having been to MANY different specialists I got an open minded one who cares about people and wants to help. I had already ordered Dr. Fine´s tests and was waiting for the kit when we had the app. with the new specialist. We mentioned being suspicious about a possible intolerance to gluten and he decided making the tests (blood test and biopsy). That is how I carried out both tests (more ore less) at the same time. Dr. Fine´s tests and the "usual" tests.

A month later, when we went back to the specialist (I had a copy of Dr. Fine´s results in my bag), we did not waited for the results and handed the copy to him. He read it carefully and was astonished.
Then he told me to immediately stop taking gluten and dairy.

We stayed around 1 hour with him (usually app. last for 10 minutes) because he checked my results and biopsy and blood tests were negative.
We talked about Dr. Fine, etc.

Almost a year later, we even have become friends.
He now suggests to his patient to start the diet in order to check if they can have food intolerances. It seems that some patients have already felt much better with the GF diet.
Talking about Dr. Fine´s tests he admitted that he now realised that many patient with symptoms they were unable to diagnose could have an intolerance to gluten. Of course he is the sole specialist who is doing this. It is against the medical protocol as you cannot start a GF diet without having been diagnosed as Celiac...
We are working together trying to convince the Medical System about Dr. Fine´s findings to bring his tests to Spain. He told me that through official means, this can take many years, but we have to work on with it.

But not all is positive.
I have many contacts with people throughout Spain. People with MC, Colitis, Crohn, gluten intolerance symptoms, etc.
Their GP and/or specialists are skeptical about Dr. Fine´s tests and carry out the "usual" tests leaving MANY patients undiagnosed. Some are children, other are adults. But all are suffering and do not deserve not having the appropriated information.

That is the reason that encourages me to work spreading the information among them, through all the different forums and associations.

I even have written to the Goverment´s Regional and National Health Department, Ministers, Celiac Associations, etc. telling them about the evidence that fecal tests are the way to help many people... And that is only part of the work I have started to spread Dr. Fine´s tests and findings.

It is not easy. I know.
I have found people who do not want to hear anything about it. But others listen and it helps them. And if I am able to help just 1 of them, it is worth trying.

Love,
Tessa

thedell19 · Post by **thedell19** » Wed May 17, 2006 11:41 am

OK thanks guys. That makes me feel so much better. So it is day 3 of GFCF diet and I will post food in another thread. Thanks again!

artteacher · Post by **artteacher** » Wed May 17, 2006 12:24 pm

If this helps any, my doc (from the Mayo in Scottsdale) suggested I try Pepto Bismol based on a "out in left field" report that some MCer's were helped by it, since it was a treatment that might help without prescription drugs. He even knew the correct dosage recommended by Dr. Fine. That's how I knew to look up MC, and Dr. Fine on the internet, and found this site.
Who knows what state I'd be in if it weren't for finding you all. Thanks so much Polly and Karen and Wayne and grannyh . . I could go on and I should know better than to start naming people, because I'm leaving people out. But you know who you are, everyone who was patient with me . . sincerely, thank you.

Love, Marsha

Post by **tex** » Wed May 17, 2006 12:26 pm

Wow, Tessa,

Excellent! Someday you will be recognized in your country as a pioneer in the struggle to improve health care. You have already helped many people by convincing your specialist that gluten and casein can be a problem, even though a blood test may show that they are not.

Love,
Wayne

Lucy · Post by **Lucy** » Wed May 17, 2006 11:37 pm

Hi all,

My sister, who IS a family physician and therefore, a generalist, and who has the same foods to not eat as I do, per Dr. Fine's tests after a gf trial worked, recently purchased Dr. Green's newest book (2006).

As some of you, like Carrie, already know, they do not do the stool testing there at Columbia. My sister was telling me the other day that his explanation in the book is that he doesn't want to take anyone off of gluten just because they have antibodies to it.

(Hopefully, he was referring to asymptomatic blood relatives of celiacs, but I'll have to get the book when she's through, and report back on what he actually wrote, to be fair.)

I still have a problem with these upgraded blood tests now used since they still miss a good no. of people with end stage celiac disease (flat villi), which means they miss MANY people who are shy of that, but still need to be treated as well.

Hopefully, these big "Centers of Excellence" for celiac disease treat everyone individually enough that they at least suggest that they might want to try removing gluten and other things when nothing works, short of medication, but I'd be willing to bet that most of them have a sort of one size fits all approach.

It's interesting that none of these superstar celiac guys, inspite of their differences, ever makes comments about Dr. Fine in the kind that some of these regular GI's have made to some of you.

Dr. Fine has received grants (at least 2 that I know of) from N.I.H. He's also published before in New England Journal of Medicine several times in addition to journals that Polly has mentioned. What I would like to know from his critics is WHY would the N.I.H. be giving grants to and N.Engl J of Med be publishing the work of someone they never heard of?

I think a big problem here in the USA is that celiac got lost in the crowd of ulcerative colitis and Crohn's which seemed more exciting to young researchers so there were a number of years of silence in celiac research, and training just sort of left out mention of it -- just a paragraph in med texts. Hopefully, this is changing FAST!

I think that my family has been educating lots of people, especially restaurant staff, about these food "allergies" and celiac disease, and I am beginning to hear more of them say, "Yeah, I've heard of that" or "someone as in the other day with that."

A friend in Fort Worth who is a stock broker called this morning, and told me that he'd actually asked someone in a Wendy's up there if he had celiac disease because of the weird way he was eating and because his wife had said that he couldn't eat wheat was the reason. They were both nursing students because the doc was so impressed that they'd figured it out on their own (welp, t he wife had, and had insisted the tests for celiac be done) that he'd suggested they both go to nursing school, and guess what, they did! Some story, eh?

Keep up the good work, Tessa!
Yours, Luce

Polly · Post by **Polly** » Thu May 18, 2006 7:44 am

Interesting thread...........

Tessa, I am impressed with the work you are doing in your country to get the "word" out. And I applaud you for making your doc a believer. Just that alone will help so many people. I have the greatest admiration for activists like you. Keep up the good work!

I know it is a big issue in Spain, because you told me previously that one must be diagnosed as celiac to be eligible for recuced-cost gluten-free foods. It is such a shame that so many gluten-sensitive folks can't take advantage of the discount just because their classic blood test for celiac is negative. Hopefully that will change someday with your efforts.

CAMary - I agree - profound thought. How come the most profound thoughts are so simple? No-brainers, really. It's like pointing out that the emperor has no clothes. Now you have 2 "classics" - celiac "lite" and this new one.

Marsha, thanks for the kind words......BUT - you have helped me as much as I may have helped you. That's the beauty of this website - we learn from everyone!!! I have always said that the "whole" of this website is much greater than the sum of its individual parts.

Love,

Polly