Research results

[Lucy]

Hi all,

Bottom line is that if one is a true person with M.C., then you are gluten sensitive, period! The results are overwhelmingly convincing.

If you do not test positive for celiac disease with the standard diagnostic methods (at this time), the blood test and small bowel biopsy, that simply means that the damage to your small bowel is not "severe" enough to produce COMPLETELY flattened villi as is seen in the people who test positive for celiac, and thus get that diagnosis. There is proven damage to the villi, but it is "subtotal." For some reason, only FLATTENED villi count with the current standard.

The analogy that was made was to terry cloth vs. a smooth sheet, the little projections on the terry cloth being compared to the villi of the small intestine.

Of course, we all know that towels are made out of terry cloth because those projections give more surface area for absorption of water, and absorption is the function of the villi in our gut.

I'll have to see if I got enough in my notes that I can make sense of, but if I can't, a DVD will be ready in about 8 to 12 weeks, I believe.
Sorry if I posted a shorter time on another post about this!

Anyway, there was a list of reasons why people say they don't get better on the diet, and one of them was that they don't stick with it long enough. I hope to be able to find what the others were. Of course we all know that when other allergens are being reacted to, this can mask the improvement --in my case, to a much lesser extent, in that I just had light diarrhea after removing even the most minute amounts of gluten.

I must say that the rabbit food at the hotel was TERRIFIC! Can't believe that I ate so much, and even Mom pigged out! I'm really curious as to how the chef made this pesto sauce without gluten, dairy, or eggs! I do know it had parsley in it or something similar.

Besides that, they had these "ice cream" balls that looked delicious, made of other things, but we were soooo full, and ate and talked to people so long that it was time to go back for the next topic before we could get to try the "ice cream."

I must say that the hotel, the Adam's Mark in downtown Dallas was wonderful too, and Dr. Fine did a wonderful job of negotiating prices, even our parking from Friday at 5 pm to Sunday about noon, was greatly discounted in the garage when we left. ALL the staff was sooo efficient and nice to us, and they even did the rooms so that the chemically sensitive among the attendees would be protected from cleaning and other chemicals that housekeeping services tend to use. Still, it was VERY clean and nice, and we even had a HUGE window that covered one who side of this huge wheelchair friendly room.

This was the most accomodating wheelchair friendly bathroom that we've ever stayed in, and there was plenty of room for the three of us. I wondered if all of these handicap rooms would be as good. I'm going to keep this room number in mind if we ever have anything to do in Dallas again where we can take Mom.

Dr. Fine's staff was WONDERFUL, and sooo genuinely concerned about the experience the people attending had. It was a pleasure getting to talk with the ones that I met.

Also, the attendees, mostly celiacs, were all so nice, and they were from all over the the country. I even met one of the moderators from the celiac/gs part of Harvard/Mass General Neuro's Braintalk Board. Her name is Anne and she lives in Little Rock, so I suppose that was a much easier drive for her, although I know that she did attend the G.I.G. national thing when it was held in Washington State in a recent year. Some of you who've checked out that site may remember a moderator there named Anne.

I also met the current national president of G.I.G. which had a display table outside the conference room as did the national CSA organization. As an example of others, there was a rep from one of the Epilepsy treatment centers, and she personally told me that they routinely test these people for gluten sensitivity, and a significant proportion of them also test positive for gluten sensitivity.

Oh, and I learned while there that half of G.I.G.'s members were diagnosed by Dr. Fine. This really amazed me!

I also met one of the Barefield's, the daughter of the President of the Alamo Celiac Support organization in San Antonio.
Her Mom was there from San Antonio, and we'd intended to meet her to thank her for responding to my sis's e-mail about how to find places to eat in S.A. and the Hill Country, but they must've left before dinner Saturday night, so we hope that her daughter told her that we had said we were so grateful for that quick response of her mom's.

Incidently, the president of the Dallas group is also a Barefield, so that's either a daughter or a sister of the S.A. one, I'm pretty certain.

For some reason, we were seated at the table with all the other men speakers. It was interesting listening to them exchanging information among themselves as we were loading all that good food into our bods.

Dr. Fine sure does need to get a Nobel prize in Medicine for his work as it will eventually have enormous ramifications for all sorts of illnesses.

One thing that Dr. Rea, M.D., of Dallas, reported that was of interest to me was that they have found that when a person has 5 food sensitivities (all of them the delayed type, I presume) that they will almost ALWAYS have at least one chemical sensitivity. Isn't this interesting? I think this would merit a thread topic all it's own, don't you? Any ideas generated by this?

Dr. Fine said some things that he thinks about eating grains for ANYONE that I had sort of come to the same conclusion when I did some reading on the genetics results that I had learned about in terms of more than just the CD2/8 genes being responsible for gluten sensitivity.

It seems as though all but the ones in Subsaharn Africa and most of China have the genes shown to produce gluten sensitivity including those who don't have any apparent symptoms, BUT, that just MIGHT be because these genes are in people who don't EAT wheat or gluten grains, primarily. They MAY be getting exposed to it as the world is getting smaller in terms of trading goods.

This being the case, we may soon be seeing these groups with increasing cases of celiac and other autoimmune diseases, directly related to the import of wheat, etc., and adoption into their diets.

Related to this, a while back, the pres. of our local celiac support group told me that the fastest growing country in terms of diagnosing celiac disease was in Algeria where wheat only relatively recently been widely introduced into their diets. Anyway, this was one of the reasons, in addition to the other HLA genes that those of us with M.C. have, that I'd come to this conclusion as well.

Shucks, is anyone watching the medical show on ABC right now? I didn't realize it was so late. Shucks! Hope I've not missed the heart stuff from Houston. If so, someone here will have to tell me about it, ok.

Yours, Luce

[barbaranoela]

Luce----your weekend sounded very positive----and interesting--
I could hear your Xcitement---

U will have to fill us in with more stuff--

Yes, I missed the show also!! Totally forgot about it~~~

Good night and glad your time away was successful--
luve, Barbara

[Polly]

Welcome back, Luce!

And thanks so much for the synopsis. Did Dr. Fine say anything about the different genes with regard to specific intolerances? IOW, has he noticed different gene patterns in those who are gluten-sensitive only compared to those who have multiple sensitivities?

I'd love to hear more about the chemical sensitivites. Since I have more than 5 intolerances, I guess I am a candidate for a chemical sensitivity. What is the definition of the word "chemical"? I'm not presently aware of any, but I do have a penicillin allergy (true allergy). Would penicillin be considered a chemical? Also, what is meant by "sensitivity"? Does it include an allergic reaction?

So glad you enjoyed your accomodations and that mom had an easy time of it. I so wish I had been able to come and spend some time with you. Did you get the opportunity to ask Dr. Fine any questions? Knowing you, you'd pose some excellent ones!

Love,

Polly

[Alice]

Hi Lucy,

Thanks so much for your comments! It sounds like a wonderful conference. Especially the food and hotel! How many, would you say, were in attendance? Wish I could have been there.

Love,
Alice

[artteacher]

Dear Polly and Lucy,

Maybe that chemical sensitivity would cover sulfites and sulfa drugs, also? There are manmade sulfites, and natural ones, so I'm wondering if that counts as a "chemical sensitivity", as well.

Thanks Lucy, for the Reader's Digest version!! Love, Marsha

[harvest_table]

Hi Lucy,

Thanks for the report about the conference! I would be interested in reading anything you wish to share. You mentioned a DVD? Is that a copy of the seminar topics?

You know, I have not had Dr. Fines tests done like alot of you but his report that if you have MC, you are gluten sensitive..period just confirms what I've learned with the help of others here and trial and error in my own diet. When I ingest it, I get sick.

Couple important questions:

1) Did he indicate WHEN he is publishing his findings and in what journal?
2) Did you hear him play and sing and is he good at that too?

Glad you had a great time with you Mom and Sister.

Love,
Joanna

[starfire]

Thanks so much for sharing with us and please add to your post whenever you think of something - K.

Wasn't Tex going also?

So glad you all had a good experience with the food and hotel. I know it really added to the trip.

Love, Shirley

[hazel]

Wow Lucy, it sounds like you got a lot of information. And I'm so glad that you and your sister and especially your mom could go and have such a good time, with the excellent room and cuisine! You guys haven't been too long on fun lately so this was the perfect getaway.

[Lucy]

Hi again,

Welp, I'm back, but pooped, but will answer the questions I can for the moment. Still need to review my notes. My sis left after the main presentation in the beginning to take my mom for a nap to elevate her legs.
I'd planned for her to attend the second session of Dr. Fine's before lunch and for her to take notes while I took Mom for a nap until noon, but she doesn't take orders from me very well sometimes! Ha! I had thought that I would already be familiar with most of that session, and my sis is very interested in nutrition.

They came on back down for our delicious lunch, but Sis took mom again for a TWO hour nap after lunch, so I didn't have Sis there to help me with the notes and memory. Dr. Rhea's talk was very fast, and full of information. The examples he gave of people who'd responded to treatment were pretty interesting. His clinic is located inside the Presbyterian Hospital there, and I've actually attended a Parkinson's seminar there a few years ago. 5 Blocks away in a specially made facility by Marriott, is where the patients stay so that they can fully detox.
They have transportation to and from the hospital, and to Whole Foods and another health food place as well as a drug store, but there's another drugstore that will deliver as well.

By the way, Sis has recently attended a lecture by a woman in Environmental Medicine that she said was very interesting. Maybe I can ask if she's got any references to pass along when I see her next.

By the way, my sis was telling me that she recently heard, on cable, I believe, about some guy who was trying to sell his methods to the government for detecting the presence of chemical or was it biological weapons by using beatles that he trains to dance when they detect them (I'm dead serious, so don't laugh, ok!). Training is just the old Pavlov technique, and it works! They dance, he feeds 'em. Nice work if you can get it! But I digress...

Polly, unfortunately we had to return on Sunday, and the Q&A part was the one thing that I really wished we could've stayed for Sunday. I would also like to have been able to hang out with the staff a little more since the numbers would've been smaller. Think Dr.Fine was going to go with anyone who wanted to go to see Dealey Plaza and the JFK Memorial and Book Depository that afternoon, so would've done that. The rest was just sort of fun stuff.

During the lectures, they asked us to postpone questions until that session on Sunday, so that they could present all the information, and your question about all the allergens, and if genotypes were specific and predictive of the particular allergens we have was one of the ones that I and probably many others there were planning to ask, so I would imagine that someone asked that question Sunday, and that it will be on the tape.

I think that the research he's doing on the other "allergens" besides the gluten, may be still underway. I remember asking if I could test for corn, etc., a while back, and was told, "Not Yet," because they were still being researched, so that's what leads me to believe that that may be a separate study.
Remember that the purpose of the first lecture, was to present the data that's ready to be published? He did make reference to other findings during other explanations. This is just my guess.

Actually, the data he presented was pretty much the same as Polly's figures of the 60 plus people who tried the diet in the beginning of the original site, when all but one were successful. I think he was trying to avoid boring the lay people with too much in the way of numbers, while still wanting the medical community present to see those figures. He mainly wanted people to understand the overall concept, I think.

I'm not saying that he didn't discuss the other allergens common to us...he did, and then some, but just not any of his own specific research results in terms of actual numbers, if I'm not forgetting something.

In terms of WHEN, I believe that Dr. Fine and the other researchers are going for the gold on this one as someone told me that they would like to get the research into New England Journal of Medicine, if possible.

I would imagine that it would already be in pre-publication stage if they'd just gone for one of the main gastro journals that he often publishes in, don't you? After all, this is a ground breaking study with far reaching implications for many diseases.

I have no idea who the person was I had asked about which journal, btw. I'm certain that Dr. Fine was asked about this during the Q&A session on Sunday.

Polly, as an example, one of the chemicals that was mentioned fairly often was one found in plastic bottles like the ones filtered water may come in. The ideal is to use a good filtering system, and store it in either a glass or a stainless steal container, I believe. There was something about something being made of ceramic as well.
Dr. Rhea is an Environmental doc, so he talked about biologicals as well as organic and inorganic toxins, and foods as well.

There wasn't a whole lot of defining of terms, but as best I remember, all the immunological reactions were referred to using sensitivities. Perhaps this is my bias, but I've always thought that an intolerance was something other than an immune response, say, something like lactose intolerance in which there's an inability to digest something with no immune response to it. I reserve the term "allergy" for the more immediate reactions, such as with Penicillin.

Polly, please set me straight on this as I've seen definitions which seemed different to me on this. Perhaps we should just use them interchangeably, and let it go at that. What do the rest of you think about that?

After all, we all know what we mean, and newbies likely won't know the difference.
Guess, for them, we could simplify even more and call 'em "delayed food allergies."

Dr. Fine's second session had to do with optimizing one's health, and part of this he did by modeling his own dietary approach.
Interestingly, he'd been having a bit of a problem with achiness, and discovered that it was the flax seeds that he'd been eating lots of for protein of late.

He said that his diet is based mostly on fruits and veggies and nuts for protein and fat, and described how he distributes it through several feedings throughout the day. He gave some generally applicable guidelines for what the times of day for, say, a little fat, and protein is particularly needed, for instance.

Dr. Fine said that we need to experiment with different kinds of nuts to discover for ourselves which ones agree with us and which don't, and then just use the ones that agree with us for the protein and fat that we need.

If we do meat, then range fed turkey and wild salmon are good choices as are other game meats -- less immunogenic, in other words.

Somewhere he mentioned the problem that some have with nightshades as well all already know about. He also cautioned about oxalates, such as are found in chard, and other leafy green vegetables.

So what did he say he did eat that was green? Said he eats lots of green lettuces, and we enjoyed lots of them Saturday as well. Even had some here at the house today.

Dr. Fine recommends keeping the body on the alkaline side, so it sure would help if we could eat things like chard and other oxalates as they are known as strongly alkaline foods. Shucks!

Wow, am I sleepy! Otherwise, I'd look up some more in my notes. I did look just a sec, and it was pretty messy.

Didn't get to hear all of Dr. Fine's musical stuff as we had to put Mom to bed to elevate her legs. She did go with us to the comedy thing right after dinner, and it was fun, and relaxing. They had some funny pictures, so that gave her something to look at.

Music was immediately after that with the band. In the first song with his band, I could only hear something about "going to see my doctor," so I imagine the lyrics were designed to teach something healthy to the age group that is most impressionable by that kind of thing. We were at the complete opposite end of this giant convention area near the back doors where we'd sat during the comedy thing, so when they opened the curtain on the opposite side, the band was already set up -- kinda neat effect, I thought.

Anyway, we could tell that Mom was pooped, and we were getting that way as well as it was pretty late. We also had to get ready to go the next morning, and it takes lots of time to get Mom ready, pack, etc. with all the extra stuff we have to take for her, and all the care she needs before going to bed, etc.

At any rate, I believe that a number of people moved on over close enough to "feel" the music, so that he had a nice audience. Believe there was another physician playing in that band as well, but don't know his name or specialty.

Gotta go to bed soon.
Yours, Luce

[Lucy]

Oh yeah, and there was a doc there from Atlanta, the endochrinologist who was on the panel, and he sat next to me at lunchtime. Said he'd actually been at Emory at the same time as the well respected celiac doc, Cynthia Ruddert, M.D., if any of you are familiar with her. Incidentally, they are both over near St. Joseph's Hospital there in Atlanta. I got to see that hospital when I made one of my respite trips there a year ago last October -- lovely setting!

Anyway, this was the guy who covered the loss of the hormones with these food sensitivities. I've always thought that there's some problem in the higher centers of the brain, like the hypothalmus, and sure enough, that's one thing that one of the docs said needs to be proven or looked at through research.

Dr. Fine, in one of his talks, also talked about the inability of some folks to make IgA, and how that effects outcomes. I'm pretty sure we've worked that topic pretty well either here or on the other site already.

Nite everyone!
Yours, Luce

[MaggieRedwings]

Hi Lucy,

What a recap you have done for us. To be honest, I printed it and will read it a couple of more times before adding comments. Was glad to hear of the recognition of nightshades, etc.

I also fall in that 5 category for intolerances.

Will get back to you on this.

Thanks, Maggie

[harvest_table]

Thanks Luce,

Anyone interested in listening to Dr. Fines musical talents can check this site. He is multitalented for sure.

http://www.kennyjude.com/

Love,
Joanna