This Is By Far The Biggest Problem With Medical Researchers

[tex]

Hi All,

I missed this comment the first time around, (when we were originally discussing this research article), but the comment below, clearly defines the biggest problem with medical research, (and the biggest problem with medical researchers) - their "Treat it with drugs" attitude.

Regulating the aberrant immune response to gluten with a drug "would be a much more efficient way of dealing with celiac disease," Anderson said,

From:

http://health.usnews.com/health-news/di ... sease.html

Why it would be "a much more efficient way", he didn't specify, and I have difficulty visualizing any logic or truth in that statement, but now that it is "on the record", it will be easy for most people to believe, as long as it remains unchallenged. Clearly, the only disease, for which the prescribed treatment is diet, (celiac disease), is now centered in the sights of the medical community, and they are out to put an end to the idea that any disease should be treated with diet. Sadly, one of our "heros", (Dr. Fasano), appears to be leading the pack.

When he jumped ship, to form a company to develop and sell a drug product that regulates the action of zonulin, (which opens the tight junctions in the small intestine), he became a willing partner with Big Pharma, in the battle to stamp out treatments that don't involve drugs. I guess he figured, "if you can't beat 'em, might as well join 'em".

Tex

[grannyh]

If I were to eat the diet the government now recommends without drugs.. I would be in big trouble...LOL The convenience is not for the patient.. The convenience is for the plans in place for the future.. and what foods we should eat and what will be available...just my 2 cents on that:)
grannyh

[harma]

This again shows that mainstream medicine is not open for alternative solutions for diseases, for example diet. Celiac is one of the view diseases that is very easy to cure, a gluten free diet. But there is no money to make in diet land. The amount of money made on special diet products is of course peanuts compared to what the pharmaceutical industry makes.

I wouldn't be surprized as soon as they will find a pill to cure celiac, automatically more gluten sensitivity diseases will be discovered. Money will put into research to show gluten causes more than just celiac and HD. This research is not done now (or minimal) because there is no money to earn. It will only cost money. But as soon as there is a new drug, there also has to be a new market invented for it.

[Joefnh]

Between big pharmas influence and the ease of just writing a prescription, many doctors work primarily with the belief that a pill can fix most ills. On the other side of the equation is the patient / consumer - in many societies we don't want to work too hard for anything, so the pill is the easy way out. Dieting is hard work, exercise is hard work etc.

--Joe

[tex]

But as soon as there is a new drug, there also has to be a new market invented for it.

I believe that you are right on target with that comment. I agree with you that they will definitely "discover" more "need" for the drugs, once they are available.

Tex

[Gabes-Apg]

what comes first? the drug or the target market???

[Joefnh]

Doesn't the disease (aka Target Market) have to come first??? LOL

--Joe

[Polly]

Hi All,

I have to respectfully disagree here. Personally, I would take a pill in a heartbeat if I could avoid diet. Of course, no, I wouldn't want to take non-specific medications long-term that suppress the immune response (unfortunately, the only medicines we really have available for MC to date - pred., imuran, etc.) but I WOULD take a pill that actually gets to the root of the problem, that chemically corrects a deficiency that might be causing our MC. If reducing my zonulin level will prevent leaky gut and allow me to eat those foods I now can't, count me in. There's a world of difference between a drug that simply suppresses a disease and one that actually corrects the underlying deficiency. Also, I believe that the "drug" Dr. Fasano has discovered is a naturally-occuring peptide in the body. Don't forget, his research has far greater potential than just celiac disease..........he found elevated zonulin levels in type I diabetes, rheumatoid arthritis, and something else I forget just now. It could have major implications for many AI diseases.

Love,

Polly

[Gloria]

I'm with you, Polly. If the pill will allow me to eat normally again, I'll take it in a heartbeat, as long as there are no serious side effects.

I have my life back in the sense that I can leave my home to go shopping, to the beach, etc. But I don't have my life back because I don't feel free to travel away from my home, eat out with my husband, or even enjoy dinners at home with him, not due to concern about D, but due to an extremely limited diet. And it would sure be nice to enjoy fruits, vegetables and ice cream again!

Gloria

[tex]

Personally, I would take a pill in a heartbeat if I could avoid diet.

But that's because you're a doctor. Just kidding. LOL.

There's a reason for everything - every process in the body. Very little is known about the zonulin/pre-haptoglobin 2 molecule. Dr. Fasano and company, discovered it roughly 10 years ago and they have choosen to view the production of zonulin as a process gone awry, and they've set their sights on chemically controlling it, to cure several autoimmune diseases. But haptoglobin 2 is a unique molecule - it is what separates us from the other simian species. I doubt that we have developed zonulin/pre-haptolobin 2 by accident, and I doubt that it is produced by our bodies because of a deficiency. Most likely, it is produced by the body for a specific purpose - we just don't know what that purpose is, yet.

Think about it - the body does not produce chemicals, hormones, or whatever, just for the hell of it - every chemical process has a reason for it's existence, and typically, it is a vital part of the life cycle, in the long run. Surely a molecule as unique as haptoglobin 2, will prove to play some vital part in our existence, once we reach the point where we actually understand it.

Dr. Fasano's proposed remedy, Larazotide Acetate, is described as a "novel, non-absorbed peptide". Does it occur naturally in the body? Why would a "novel, non-absorbed peptide be produced normally in the body? That description sounds suspiciously unnatural to me, but I will concede that I know nothing about it. That pill will make him very, very rich - something that promoting the GF diet could never do.

GMO wheat could accomplish the same goal, and from a scientific standpoint, it would be a much more efficient, (and much more economical), solution to the gluten-sensitivity problem. The concept of genetic manipulations scares people, though - they would rather take expensive pills, because they understand pills, and they're used to them.

That said, Dr. Fasano's pills will sell like hotcakes, whether they work without allowing continued "hidden" damage, or not, because even though people complain loudly about having to take pills, given a choice, they will always choose the "easiest" solution, and that is almost always pills.

As for me - I probably take more pills than anyone else here, , so nope, I won't be adding any more pills, just so I can eat gluten again. It's not a healthy food, in the first place, and I don't miss it.

Tex

[mbeezie]

Interesting discussion. I won't be the first in line to get the drug. How often have new drugs come on the market that haven't been studied well enough and create bigger problems than you had in the first place? Look at avandia - going to make a bunch of lawyers very rich. I agree that people want an easy way out. Type 2 diabetes treatment is a prime example. When I worked as a dietitian we would beg people to stay on their diet but they would actually rather take pills or even insulin. It boggles the mind.

Most of the time I don't miss gluten etc either but oh how I wish I could take a pill for vacations. I dream about eating my way across Italy and France without worry. Sigh.

Mary Beth

[Polly]

Mornin'!

Yep, Tex, a doc, but one who has always been suspicious of big pharma. As you know, I take NO meds at all other than daily vitamin D. I have never believed in mutivitamins or calcium even! And, you know I have managed my multiple intolerances and MC with diet alone for 10 years now.

That said, I remain open to medication should the right one become available. Perhaps because Gloria and I have SO many intolerances as double DQ1s, we have a different perspective. It would be such a luxury to be intolerant only to gluten or even to just gluten and dairy. Sigh.

I believe that Dr. Fasano's research may be the most promising for us at this point. Actually, I'm a little surprised that you are so cynical about it. Weren't you the first one to talk about leaky gut and lament the fact that it wasn't even in the vocabulary of mainstream docs?

My understanding is that the function of naturally-occuring zonulin in the body (and it has been found in other mammals too) is to regulate those junctions ("gates" as we say) in the intestine that allow nutrients to pass into the body. The more zonulin the body produces, the wider and longer the gates stay open, allowing larger (and thus damaging) molecules into the body to trigger an autoimmune reaction. It is known that gliadin (gluten) can cause an increase in zonulin levels and that folks with certain AI diseases also have elevated zonulin levels. Also, my understanding is that the peptide drug treatment is similar to (if not the same as) the way that the body deactivates zonulin naturally. Dr. F's research also finds that zonulin may regulate the blood/brain barrier the same way it does in the intestine. This would help explain a lot of those generalized/neuro symptoms (fatigue, brain fog, etc.) that we are so familar with and has tremendous potential for understanding other diseases.

I really don't care if he becomes a gazillionaire - more power to him, IMHO! He is the one who has greatly increased awareness of celiac disease internationally (was the first to do the incidence studies) and has been a dedicated and out-of-the-box thinker/researcher/clinician. Now, if only he knew that celiac is just the tip of the gluten intolerance iceberg! LOL!

This kind of treatment could prove to be an amazing boon to Gloria, me, and others with multiple intolerances, since the treatment would tighten those gates and hopefully prevent ANY kind of offending protein from entering - not just gluten but also dairy, soy, egg, etc.

No matter what, I will always eat mostly paleo, as I have come to believe that it is the healthiest diet for my genes. However, it would be wonderful to be able to eat out and travel without worry of contamination, as Gloria said.

Love,

Polly

[tex]

Polly,

I'm sorry, I realize that I shouldn't be sounding so cynical, because Dr. Fasano's work really is groundbreaking, and his contribitions to the knowledge base are unquestionably virtually priceless, for furthering our understanding of gluten-sensitivity, (and other food sensitivities, as well, obviously). As you probably recall, early on, I was really enthusiastic about this line of research.

As best I can determine, the recent announcement of the discovery of the "three major peptides" that cause celiac-type reactions, is the primary source of the wet blanket that dampened my enthusiasm. I realize that this announcement has nothing to do with Dr. Fasano's project, but the attitude of the researchers seemed to change the entire atmosphere surrounding the search for a "solution" to the gluten-sensitivity problem, (or at least, it changed my perception of it). Those guys detected close to a hundred peptides that are implicated in celiac-type reactions, then they narrowed that down to only 3 that are "the worst offenders". They are already working on a treatment program to "desensitize" the immune system toward those 3 peptides, with the obvious intention of marketing it and getting rich. Well duh! What about all those other gluten, (both gliadin and glutenin), peptides that we react to. And what about all those that still remain undetected/unidentified? The immune system is not going to ignore them, simply because it has been "desensitized" to certain other peptides. I guess I'm just turned off by "research scientists" who are so quick to try to rush something, (anything), to market, in the hopes of wealth and prestige, (when any fool can see that their program falls far short of a workable plan). And yet, people will blindly rush to pay for this stuff, because they are so desperate for an "easy" solution.

Yes, that has nothing to do with Dr. Fasano's work, but it really illustrates the mercenary attitude of research scientists these days. In a word, to me it appears to be just plain greedy. What has happened to the days when researchers pursued their work simply for the joy of "discovery"? At one time, researchers "burned to learn". These days, they apparently burn to get rich. No, I don't begrudge them the spoils of their work, but clearly, many of them are trying to rush a "half-baked" product to market, before someone else beats them to it.

I hope that Dr. Fasano, (ALBA Therapeutics), gets there first, because his technology does appear to have a good chance of working effectively, (and hopefully, safely). If someone else gets a product on the market first, though, the odds are very high that it may suppress the clinical symptoms below the threshold for a reaction, while allowing "hidden" damage to acrue to the intestines. To most people, only symptoms matter - they really don't care what might be happening to their internal organs, (they do care, deep down, but they simply shut it out, by ignoring it). That's a form of denial, of course, and it's the default reaction.

Even with ALBA's product, there is no telling what will turn up, years from now, as millions of people drop their diet, and rely on the pill. These are uncharted waters, and we all know how poorly the medical system monitors the effects of such treatments. For many decades, it was assumed that the GF diet promptly restores normal histology to the small intestine. Only in the last few years has research gotten around to proving the fallacy of that claim - it actually takes years for histology to normalize. Anyone who takes pills to treat a medical issue is a "guinea pig", and they remain a guinea pig for the rest of their lives, even if they stop taking the drug. We know that diet is a safe way to treat food sensitivities. We absolutely do not know if any pill is safe to treat food sensitivities - not in the long run.

That said, there's no question in my mind that Dr. Fasano's product has the best prospects of anything else that I've seen proposed, for anyone interested in treating food sensitivities with a pill.

Love,
Tex

[CAMary]

Well, I also would be first in line to take the pill. I'm not a meds taker either, but would opt to if i could get my pre-MC life back. I hate having to eat before parties, I hate that I always have to choose where to go out with friends. I hate going to potlucks and eating only what I brought. The normalcy that would return to my life (as well as the $ it would save!) makes this a VERY appealing option!

Mary

[barbaranoela]

thats why I luve my GP---doesnt throw pills at ya and THIS SHOULD HELP---

when there is a reason for meds. he prescribes and I take--

in 04 when I was going in for surgery---not by Kozin(he was in on the issue) I CALLED his name---he turned around and I said -pointing my finger at him---Dr; K. I TRUST U and he replied *I know U do*

I am more than thankful that L and I have a great doctor--

Barbara