What If...

[Ursa Major]

Articles like this, and knowing they're working on a pill that might help celiacs with contimination issues, but is not intended to replace the gluten-free diet, makes me worry that the pill might be a mixed blessing. If docs have so little faith in our ability to stay on a diet, will the future of celiac be a dependence on this pill in the same way type II diabetic can depend on insulin instead of dietary changes?

Carla, I think (and hope) that there will be a difference. Most people don't realize that carbs are the cause for type ll diabetes, because they aren't educated by their doctors and dieticians on that fact. The diet they are supposed to follow has them count all carbs and where they are on the glycemic index. But at the same time they're told that carbs from grains, potatoes and other high-starch foods provide essential nutrients, that they can't get elsewhere. Which is obviously a lie (otherwise I would be wasting away, as all starches make me ill) .

On the other hand, everybody KNOWS that gluten is what makes people with celiac disease sick. I hope nobody would get the idea to tell us that we NEED grains to be healthy, if only we take that pill. I sort of think that most people wouldn't believe it if somebody told them that (even though some people will believe anything if it is what they want to hear).

[eKatherine]

Articles like this, and knowing they're working on a pill that might help celiacs with contimination issues, but is not intended to replace the gluten-free diet, makes me worry that the pill might be a mixed blessing. If docs have so little faith in our ability to stay on a diet, will the future of celiac be a dependence on this pill in the same way type II diabetic can depend on insulin instead of dietary changes?

The future celiac would be dependent on a pill, which like the pills given to type 2 diabetics, will be of limited effectiveness and have serious side effects even when used as intended. They will cost far more than any gluten-free diet could possibly cost, even with expensive food substitutions for highly processed baked goods, prepared foods, and junk foods. Yet doctors will recommend them in the place of what they consider to be an impossible to maintain, hideously expensive dietary regimen - ie, a wholesome diet of natural home-prepared foods readily available in the produce and meat department of every store.

[Nancym]

I think the sad thing is, most diabetics aren't even given the information that they could reduce or eliminate their dependence on medication by diet. Instead they're told that medication will reduce the damage to them caused by diabetes. But they're still having unacceptably high blood sugars and long term damage.

I remember seeing a Mystery Diagnosis episode about a little girl who lacked the enzyeme need to break down sugars. They told her mother she would die a very painful death at a very young age, because everyone did. But fortunately one doctor realized that you could avoid the problem by simply eating a diet that contained no sugars (or starches). So far, she was doing fine and had outlived everyone else that had been borne with the defect.

We have this mindset that our diet with all these starches and sugars is how people are supposed to eat, ignoring the evidence that when these were introduced with agriculture, that people started getting chronic diseases. So rather than connecting the dots, that too many sugars and starches makes people insulin resistant (which includes obesity, high blood pressure, and eventually heart disease, and probably Alzheimer's). They decide that obesity is the turn-key event that causes the rest of the syndrome. Not that the underlying assumptions about the food is wrong. So they're looking for the long-term management of these individual things.

Why don't we start fixing the problem by moving farm subsidies from wheat, sugar and grain and tabacco production, to veggies?

[Guest Doll]

Eh... it happens in conversations, which is what message boards are. There was response to your original topic, and I know that I at least am in the "it's not a what if, it really does happen" camp. Heck, I didn't see much response to what I wrote about the fact that doctors have a logical reason to do what they do. They try to provide the most useful service possible, and that has to take into account what advice a patient will follow. Of course, the research on diet is incomplete, spotty, and riddled with biases and inconsistencies from hidden interests. And that's without mentioning that it's a terribly complicated system that cannot easily be picked apart the way that most other things can be studied.

I totally agree. Doctors do take the Hippocratic oath (Do no harm) for a reason. Most doctors DO care about their patients and would not let someone suffer intentionally if they actually SUSPECTED they had Celiac, just so they could prescribe more pills. In fact, as Celiac was fatal in the past, most patients with Celiac would die if untreated from malnourishment, electrolyte imbalances, etc. so they would have no one to prescribe drugs TO.

I think the problem is that medicine is simply misinformed. Doctors were in the past not taught that Celiac can present in adulthood, and atypically. So, when their patient has GERD, seizures, shooting leg pain, and panic attacks, they assume GERD, epileptic tendencies, idiopathic neuropathy and an Anxiety Disorder as opposed to even CONSIDERING Celiac.

As the knowledge gets out about Celiac, and more young doctors are properly educated right off the bat, this will change. Only now is the research community beginning to realize that MS, Lupus, Type 1 diabetes, RA, Celiac, etc. are all essentially the same immunological defect (autoimmunity) and disease, simply presenting in different forms (and with different triggers). Obviously! And yet, someone with all those diseases sees multiple specialists to treat the individual SYMPTOMS or results of the disease, as opposed to an immunologist to try and stop the CAUSE. As you can see, there is much to be changed, and it will not happen overnight.

We also need to inform doctors that it is NOT that hard to follow a gluten free diet and that we would rather do so than suffer the serious consequences of not doing so. It's a misinformation and education issue.

As for the diabetes issue, there is no evidence to think that doctors do not want to prevent or treat Type 2 (the common kind not related to Celiac that is usually triggered by being overweight, inactive, etc.) through diet. In fact, if you research Pub Med, there are hundreds of research articles on preventing Type 2 through diet, exercise, weight loss, etc. There are "healthy living" commercials on TV paid for by the government. 300 million dollars was allocated for "Chronic Disease Prevention" specifically diabetes (Type 2-the preventable kind) in Canada. The problem is that people don't want to listen or are unable to draw the line between their actions and the consequences. People would rather load up on a trans fat ladden Big Mac as opposed to beans and fish. It's common sense to eat healthy, but sadly, few actually do it. We as Celiacs have no choice.

The general public and doctors both need to be educated and make the effort to help themselves.

Articles like this, and knowing they're working on a pill that might help celiacs with contimination issues, but is not intended to replace the gluten-free diet, makes me worry that the pill might be a mixed blessing. If docs have so little faith in our ability to stay on a diet, will the future of celiac be a dependence on this pill in the same way type II diabetic can depend on insulin instead of dietary changes?

This pill is a GOOD thing people!!! It closes the "leaky gut". The same gut that is letting multiple other toxins and foreign whole proteins into your body as we speak! Also, some of us are so sensitive (myself) that we react to ANY CC violently. Sometimes it is hard to eliminate ALL CC.

[Nancym]

It's true, and I think it's one of the reasons celiac is under-diagnosed. (Particularly asymptomatic cases.) But look at non-compliance rates for the diet in true studies (not on this board, because we're not a representative sample), and look at compliance rates for dietary changes for being overweight or other chronic conditions - diabetes, blood pressure, heart disease, etc. In the general population, the non-compliance is actually shockingly high, so the doctor's aren't entirely wrong to assume that most of their patients won't comply with dietary changes, but they are misapplying the statistics, and doing a *GREAT* disservice to not mention it. Not to mention the fact that their are contributing to, and greatly exacerbating the problem themselves, by encouraging the behavior that allows people to be non-compliant.

What is the non-compliance rate? I haven't seen any statistics.

I guess the thing that would burn me up is, if doctors knew the best treatment was a dietary one but didn't tell you. I realize there will be non-compliant people, I know all kinds of people that don't care if they die from lung cancer or heart disease due to smoking. They don't care to be inconvienced by anything. Changing habits is hard and takes a lot of mental toughness I think many people lack. But... I want to be able to make that decision for myself, not have some committee like the ADA decide what information I get about my health.

I suppose we're spoiled rotten these days, with the Internet. We actually HEAR about stories like these. 20 years ago you had to convince the entire medical establishment to get with the program to affect any changes. Now doctors are learning things from their patients. And boy, they hate that!

They can't hoard the knowledge any longer.

This pill is a GOOD thing people!!! It closes the "leaky gut". The same gut that is letting multiple other toxins and foreign whole proteins into your body as we speak! Also, some of us are so sensitive (myself) that we react to ANY CC violently. Sometimes it is hard to eliminate ALL CC.

It is good and not good. You know they'll try to use it to allow GS people to eat wheat. People will use it as an excuse to not follow the diet. And drugs never are foolproof, usually have some major side-effects. There are no magic bullets.

[Guest Doll]

Carla, I think (and hope) that there will be a difference. Most people don't realize that carbs are the cause for type ll diabetes, because they aren't educated by their doctors and dieticians on that fact. The diet they are supposed to follow has them count all carbs and where they are on the glycemic index. But at the same time they're told that carbs from grains, potatoes and other high-starch foods provide essential nutrients, that they can't get elsewhere. Which is obviously a lie (otherwise I would be wasting away, as all starches make me ill) .

On the other hand, everybody KNOWS that gluten is what makes people with celiac disease sick. I hope nobody would get the idea to tell us that we NEED grains to be healthy, if only we take that pill. I sort of think that most people wouldn't believe it if somebody told them that (even though some people will believe anything if it is what they want to hear).

Carbs CAN relate to insulin resistance, but GOOD carbs, like beans, brown rice, and veggies can prevent Type 2 because they are high in fibre.

Also, just being overweight can cause insulin resistance, because fat cells themselves actually release chemicals that create insulin resistance, adding to the cycle.

Plus, the gluten-free diet is not an immediate solution to Type 2, you can still gain weight and become overweight while gluten-free. A healthy diet in general is needed.

But I do agree with a lot of your points and I do hope your friend continues to try and help himself as much as he can. He is very lucky to have a friend like you. Tell him all is not lost, but it will not be easy and it will take effort. My prayers will be with him.

I think the sad thing is, most diabetics aren't even given the information that they could reduce or eliminate their dependence on medication by diet. Instead they're told that medication will reduce the damage to them caused by diabetes. But they're still having unacceptably high blood sugars and long term damage.

I remember seeing a Mystery Diagnosis episode about a little girl who lacked the enzyeme need to break down sugars. They told her mother she would die a very painful death at a very young age, because everyone did. But fortunately one doctor realized that you could avoid the problem by simply eating a diet that contained no sugars (or starches). So far, she was doing fine and had outlived everyone else that had been borne with the defect.

We have this mindset that our diet with all these starches and sugars is how people are supposed to eat, ignoring the evidence that when these were introduced with agriculture, that people started getting chronic diseases. So rather than connecting the dots, that too many sugars and starches makes people insulin resistant (which includes obesity, high blood pressure, and eventually heart disease, and probably Alzheimer's). They decide that obesity is the turn-key event that causes the rest of the syndrome. Not that the underlying assumptions about the food is wrong. So they're looking for the long-term management of these individual things.

Why don't we start fixing the problem by moving farm subsidies from wheat, sugar and grain and tabacco production, to veggies?

Again, I agree on many points. I do have to point out though that once Type 2 diabetes has progressed to the point that the person requires meds or insulin, often they will not be able to have safe or normal blood sugars with diet and exercise alone. That is why people need to live healthy and prevent it in the first place, and work hard (strict diet, exercise, etc.) to nip it in the bud as soon as it appears.

Type 1 of course is not preventable.

[Guest Doll]

They can't hoard the knowledge any longer.

It is good and not good. You know they'll try to use it to allow GS people to eat wheat. People will use it as an excuse to not follow the diet. And drugs never are foolproof, usually have some major side-effects. There are no magic bullets.

True. But you can naturally still eat gluten-free if you choose to. Also, if you have Celiac, and this drug works 100%, eating gluten will NOT harm you, as it will not be absorbed whole into your system. It will be broken down first into amino acids as it is in everyone who is not Celiac. This pill will NOT help those with a gluten ALLERGY though.

As far as I know, there are no side effects shown YET anyway for this drug. I would have to do more research, but from my understanding, it it simply increasing the level of an enzyme or peptide that acts as an antagonist to zoulin. People with autoimmune diseases produce too much Zonulin and not enough regulators, leading to leaky guts. This pill supplements and corrects that.

Just as in Type 1 diabetics, they no longer can make insulin, so they get their insulin from an injection as opposed to a pancreas. It's not an "unnatural drug", as we all need insulin. The difference is how we get it. Quite possibly the same in this case.

I am excited about AT-1001!!!!

[CarlaB]

The general public and doctors both need to be educated and make the effort to help themselves.

This pill is a GOOD thing people!!! It closes the "leaky gut". The same gut that is letting multiple other toxins and foreign whole proteins into your body as we speak! Also, some of us are so sensitive (myself) that we react to ANY CC violently. Sometimes it is hard to eliminate ALL CC.

I agree, insulin is a good thing, too. However, if docs don't think diabetics can stay on a diet, and if there's a pill available for celiacs, I wonder if in the future the docs won't even tell celiacs about the diet because it's too restrictive and impossible to stay on.

Personally, I'd like to have the pill so that I don't have to worry so much about cc when I eat out!

[tarnalberry]

What is the non-compliance rate? I haven't seen any statistics.

I guess the thing that would burn me up is, if doctors knew the best treatment was a dietary one but didn't tell you. I realize there will be non-compliant people, I know all kinds of people that don't care if they die from lung cancer or heart disease due to smoking. They don't care to be inconvienced by anything. Changing habits is hard and takes a lot of mental toughness I think many people lack. But... I want to be able to make that decision for myself, not have some committee like the ADA decide what information I get about my health.

I suppose we're spoiled rotten these days, with the Internet. We actually HEAR about stories like these. 20 years ago you had to convince the entire medical establishment to get with the program to affect any changes. Now doctors are learning things from their patients. And boy, they hate that!

They can't hoard the knowledge any longer.

It is good and not good. You know they'll try to use it to allow GS people to eat wheat. People will use it as an excuse to not follow the diet. And drugs never are foolproof, usually have some major side-effects. There are no magic bullets.

If you search through the abstracts of studies on pubmed, you'll find non-compliance rates ranging from 5% (a study on candian children in 2005) to 25% (a study in the netherlands in 2005) to 50% (in a study in the US of transition from childhood diagnosis to adulthood in 2005) to 73% (a study of children in Poland in 2004). Additionally when you read the abstracts, you also see notes that specifically state that the patients themselves said - almost universally (on the order of 90%) that the diet was very hard.

I agree with you on wanting the information for yourself and making the decision for yourself. But only relatively recently has that attitude been the case. For a long time, there was a "do whatever the doctor says, let him make the decisions" attitude. So the doctors had to figure out the initial approach that would work for hundreds of people, and only then modify and specialize advice for individuals. You care about how all of them treat you, they care about how each of them treat all of us. It's a different perspective. Honestly, I think that expecting more willpower out of people would be a significant help - not to mention following up with them instead of "see you in six months". I'm not saying this is a *good* reason to take the approach they have, just noting that it is a firmly entrenched, logical (from this approach) behavior, that will require a particular backtracking approach to get out of.

I agree that the pill is not a magic answer - the pharmaceutical companies will make it out to be a better thing than it is, and even if it's effective and doesn't have significant side effects, reducing reliance on external medications is a good thing, in my mind.

[Guest Doll]

I agree, insulin is a good thing, too. However, if docs don't think diabetics can stay on a diet, and if there's a pill available for celiacs, I wonder if in the future the docs won't even tell celiacs about the diet because it's too restrictive and impossible to stay on.

Personally, I'd like to have the pill so that I don't have to worry so much about cc when I eat out!

I agree, insulin is a good thing, too. However, if docs don't think diabetics can stay on a diet, and if there's a pill available for celiacs, I wonder if in the future the docs won't even tell celiacs about the diet because it's too restrictive and impossible to stay on.

Personally, I'd like to have the pill so that I don't have to worry so much about cc when I eat out!

Heehee...I for sure think insulin is a good thing too...it keeps me alive Type 1 diabetics have an autoimmune destruction of their insulin producing cells, so it is not related to diet and they HAVE to take shots or they will die.

Good point about the diet, but I think that the stance that many doctors will take is that it may be actually HEALTHIER and not just convenient for Celics to take the pill, because they will still be prone to another autoimmune diseases and intolerances if they don't. Just as we seem to be on the gluten-free diet.

Many of us on the gluten-free diet still have these problems, so the gluten-free diet in and of itself is not a "cure" for all Celiacs. I think this will benefit these people the most.

I also think that the gluten-free diet will always be around because of the interest in "natural" medicine and treatment through dietary means. I just don't think it is the most effective treatment for many Celiacs, in my opinion.

It is VERY hard to avoid CC for your entire life, even if you do not react immediately, you are still causing damage. I for example, react to Amy's gluten-free products because the plant itself is not gluten-free.

P.S. I would KILL to have a "real" pizza right now! Anything I make turns out....blech....

[gfp]

Good point about the diet, but I think that the stance that many doctors will take is that it may be actually HEALTHIER and not just convenient for Celics to take the pill, because they will still be prone to another autoimmune diseases and intolerances if they don't. Just as we seem to be on the gluten-free diet.

Many of us on the gluten-free diet still have these problems, so the gluten-free diet in and of itself is not a "cure" for all Celiacs. I think this will benefit these people the most.

I also think that the gluten-free diet will always be around because of the interest in "natural" medicine and treatment through dietary means. I just don't think it is the most effective treatment for many Celiacs, in my opinion.

Doctors will prescribe the pill because they get gifts from the drug companies.

Doctors will write letters to medical journals saying the gluten-free diet is costly and ineffective...because drug companies pay them to do so.

This is the world we live in.

A zonulin blocker is a perfect drug.... for a drug company. It is a drug for life just like ranitidine for ulcer patients.

In the time between Warren and Mitchell discovering and publishing Helicobacter pylori and its eventual acceptance most dr's continued to prescribe ranitidine and NOT anitibiotics.

Many Dr's were paid to write to medical journals to discredit the work ....

Medical journals were threatened by glaxo that if they covered Helicobacter pylori in a positive way they would suspend their advertsing...

If you research ranitidine you will find two distinct trends....

Its obvious link to ulcers and its use in MBa programs as an example of a incredibly effective advertising campaign.

or

Open Original Shared Link

How Xantac became the best selling drug in history.

Meanwhile thousands died of complications from ulcers that were curable.

[Guest Doll]

Doctors will prescribe the pill because they get gifts from the drug companies.

Doctors will write letters to medical journals saying the gluten-free diet is costly and ineffective...because drug companies pay them to do so.

This is the world we live in.

A zonulin blocker is a perfect drug.... for a drug company. It is a drug for life just like ranitidine for ulcer patients.

In the time between Warren and Mitchell discovering and publishing Helicobacter pylori and its eventual acceptance most dr's continued to prescribe ranitidine and NOT anitibiotics.

Many Dr's were paid to write to medical journals to discredit the work ....

Medical journals were threatened by glaxo that if they covered Helicobacter pylori in a positive way they would suspend their advertsing...

If you research ranitidine you will find two distinct trends....

Its obvious link to ulcers and its use in MBa programs as an example of a incredibly effective advertising campaign.

or

Open Original Shared Link

How Xantac became the best selling drug in history.

Meanwhile thousands died of complications from ulcers that were curable.

I don't want to bring up conspiracy theories, but I do agree that Big Pharma and drug prescriptions are more prominent than I would like. But, while I agree kids shouldn't be handed Prozac like candy, it's ridiculous to say that a drug meant to correct the problem found in autoimmune diseases is not beneficial.

I for one would love to be able to eat something and not worry that it has been CC'd and my blood pressure will drop to 75/50 upon eating it. Or have a seizure because my blood sugar level plummets immediately when I am exposed to gluten.

I also think that if you read what I said again, you will see that I am saying that the gluten-free diet itself does not correct the defective nature of the leaky gut. If you ask all those (and there are many!) on this board if they could stop the additional multiple "intolerances", ill feelings, and autoimmune diseases that still develop on the gluten-free diet, they would often agree.

The bottom line is, those with autoimmune diseases have defective or non-beneficial genetics (at least at this current time in history, not saying they weren't beneficial at some point) and they are NOT 100% "healthy". They do not have anything to lose since they are already at a disadvantage if the leaky gut is not corrected.

Plus, from what I've read, AT-1001 is NOT for people with GS, only Celiac. It will also only be initially offered to those who are quite sensitive. Don't worry, most GS people will still HAVE to follow the gluten-free diet.

Most people with GS will more than likely never be able to take it, unless they are the subtype in which they have Celiac genes (and/or leaky gut) but genetic protection from intestinal/autoimmune damage.

I think this is worth a try, and those who do not wish to take it do not have to. For some the benefits outweight the risks. In medicine, that is sometimes a reasonable chance to take. After 23 years of not having this issue, to worrying that I may pass out and die alone if glutened since I developed Celiac, I am willing to take the risk.

[Kaycee]

I think people who always have to fit some kind of mold, well they are not my type of person in the first place. I do think that this is why so many shun the idea or stay in denial that they maybe should be tested for Celiac, even though deep down, they know it's a good idea. They don't want to be different and they sure as heck don't want their kids to be different.

You comment struck a chord, I know it is way off the original topic, but here goes.

I didn't want to be different, and I wanted to fit into the mold. What scared me most before would've been people looking at me if I did anything different. I don't like stares.

But then I didn't want to be sick either, so I took the challenge, did the test and now I am definately different.

And you know what, I like being different. I am at last probably finding out who I am, and it is not always nice, but I don't have to fit into that mold anymore. I have found another moud, with a few creases, but lots of movement for me to stretch out and find out even more about me.

I take out my different food everyday, but other people haven't changed, they keep on saying the same thing, "that looks healthy", that gets boring. I just want to shock them and have something totally unhealthy, but unfortunately, that is not possible.

Being different I think people are noticing me more, but I don't mind. I don't want their sympathy, and don't think I have it, but my workmates quite understand the dietary issues I face, and whenever there is a morning tea, they do make allowances for me, or they think they have, but don't always.

Cathy

[pixiegirl]

Wow this is a long topic I wish it were possible to sum it all up into some simple points... and its covered so much. I think Dr's. do just send a patient home with an Rx because in most cases patients won't/can't lose weight. I can't tell you how many people I know that have been told, either lose weight and take no blood pressure meds or take the meds, and they don't even stop to think about it, they just head off to the drug store to get the Rx.

Our paper recently did a series on being overweight and when I was young the number one health problem world wide in regards to eating/nutrition was starvation, much of the world did not get enough to eat. Now the number 1 world wide issue related to eating is the exact opposite, health problems caused by obesity. (yes I know people are still starving in various places but its not the foremost food related health issue). In just 20 years or so its turned around 180 degrees.

The world is just overweight and its getting worse every day. And many of those overweight people have health issues that would turn around if they were at a normal weight and even if the doctor doesn't say so, they can't pick up a newspaper or magazine today without knowing that, but do most of them lose weight, nope. I'm not sticking up for doctors believe me... it took me 11 years and a few doctors switches and tons of specialists to get a Celiac diagnosis but when it comes to weight, if telling someone they'd be healthier if they lost weight would do the trick we wouldn't have this issue.

On another issue this topic touched on.... I did some quick research and Asians do have celiac disease. I'm not going to debate the issues of genetics for a few reasons... first being I don't know much about it so what I say wouldn't count for much, and number 2 unless you are a geneticist (a friend of mine is) I'm not sure I'd buy what you say either, I do know its a pretty complicated subject. However again from the research I did Asians have celiac and it makes me wonder if they were as wheat eating as Americans would their incidence of Celiac be just like ours, rice is the major staple of their diets for now (thats changing too).

So are you all saying they can't get it due to genetic factors (that doesn't seem right since they do get it) or that because they don't eat a lot of wheat they don't get symptoms and its not diagnosed as much.

I'm sorry I'm simplifing so much but not all of us are scientists! (now if we talk about finance and the stock market I'll give you a run for your money).

Susan

[gfp]

I don't want to bring up conspiracy theories, but I do agree that Big Pharma and drug prescriptions are more prominent than I would like. But, while I agree kids shouldn't be handed Prozac like candy, it's ridiculous to say that a drug meant to correct the problem found in autoimmune diseases is not beneficial.

The point is ranitidine was beneficial but it was also engineered NOT to cure.

It is designed as a drug to be dependant upon.

The reason it became the worlds best selling drug was marketing....

They put it in a different colored packet....they targetted a disorder that is found in a large number of the population etc. etc.

and when someone came up with a cure they did everything possible including threats and bribary to prevent the cure being accepted.

This is not a conspiracy theory, it is well documented.

i found an interesting read here

Open Original Shared Link

There is a whole conspiracy side to this which I didn't bring up in that apparently (and according to Austrailian intellegence services) glaxo actually hired people to intimidate Warren and Mitchell ... to phone them and tell them they are watching their kids and make threats on their lives...

This however it is still in the realms of conspiracy theory.

[Nancym]

Wow this is a long topic I wish it were possible to sum it all up into some simple points... and its covered so much. I think Dr's. do just send a patient home with an Rx because in most cases patients won't/can't lose weight. I can't tell you how many people I know that have been told, either lose weight and take no blood pressure meds or take the meds, and they don't even stop to think about it, they just head off to the drug store to get the Rx.

There's no doubt that many, perhaps even most, people will not change their diet and rely on drugs and accept that they're going to cut about 18 years off their life. But... if it were me, I'd want to know about ALL my options and not telling me that I could manage my diet and be drug free would really stink. Because they're operating under the assumption I'm too dumb or weak willed to manage my diet. I'm neither.

Even worse IMHO, much of this diabetes could be prevented in the first place if someone had to huevos to talk about the starchy sugar stuff people are eating is causing it.

Doll, I could point you to a bunch of people that have gotten off or reduced dramatically their drugs for managing their Type II through diet. There's a support forum I frequent where this story is played out time and time again.

[gfp]

There's no doubt that many, perhaps even most, people will not change their diet and rely on drugs and accept that they're going to cut about 18 years off their life. But... if it were me, I'd want to know about ALL my options and not telling me that I could manage my diet and be drug free would really stink. Because they're operating under the assumption I'm too dumb or weak willed to manage my diet. I'm neither.

Even worse IMHO, much of this diabetes could be prevented in the first place if someone had to huevos to talk about the starchy sugar stuff people are eating is causing it.

Doll, I could point you to a bunch of people that have gotten off or reduced dramatically their drugs for managing their Type II through diet. There's a support forum I frequent where this story is played out time and time again.

The point is even worse.

Dr.s are now choosing not to tell diabetics to contro sugar or lose weight (depending I or II)

Its already been decided that screening downs kids is not worth it because of the inconvienience and "cost" of a gluten-free diet...

asthmatics in the US are being denied certain drugs because they are taken though inhalers and are instead given IV solutions due to the large fund paying to stop inhaler products being legislated even though the same drugs are available in europe in inhaler form

ADHD kids are given ritalin like candy..

I could go on but....

[mommida]

ON TOPIC

Like some one mentioned there are helpful diet changes for diabetes management and possible prevention. I am currently looking into mesquite. Grows like a weed tree in the south west, has sustained life of people of the region, and been shown to control blood sugar levels. For doctors not to suggest a a diet change for people in a pre-diabetic state or recently diagnosed diabetes is negligent.

OFF TOPIC comments

The SAmmi people of Finland were also feared and shunned becasue they were considered pagans. They were a nomadic people following the reindeer herds crossing the borders of Finland, Norway, Sweden, and Russia. The borders were closed and the people were to surrender to government control or kept in the contolled area. They went into hiding and we will never know how many people are or were of that nomadic tribe. In recent years there has been a push to collect genetic samples from descendents for study. (I don't think that's going to happen.)

I don't think all the genes have been identified for Celiac, gluten sensitivity, or all the other auto-immune diseases. I do think there have been more discoveries to prove how little we actually know. Some discoveries actually shake the entire foundation of genetics. Discovering cases of Chimerism with no outward symptoms through donor organ testing and custody cases and fetomaternal microchimerism (also stumbled upon during bone marrow transplants.)

L.

[Nancym]

I saw mesquite flour, I believe it was, in a HFS. I'm always looking for non-starchy flour substitutes. Do you know if this is an actual flour or is it a a gum type of stuff? I recently bought some glucomanon flour and tried to use it like "flour" but it really is more like a gum or thing to make gels.

One of these days I'll get around to making flour out of zucchini or something.

Back on topic, while I don't think there's any big conspiracy involved here, I think there are a lot of economic forces that want the status quo to continue. Everything from agriculture to pharma benefits from us eating ourselves into a disease state. The fact that drugs companies are focusing more on drugs that are used to manage diseases versus things like... new antibiotics which are used for short term illnesses, it seems obvious to me that the free market economy knows that sick people are better customers than well ones.

[mommida]

Mesquite is edible from the tree in its pod. It can then be dried and then ground into a flour. It would also be edible in a paste form. It is suggested to only substitue 1/4 of the flour with mesquite flour. The taste is also variable from sweet to spicey.

L.

[par18]

If you search through the abstracts of studies on pubmed, you'll find non-compliance rates ranging from 5% (a study on candian children in 2005) to 25% (a study in the netherlands in 2005) to 50% (in a study in the US of transition from childhood diagnosis to adulthood in 2005) to 73% (a study of children in Poland in 2004). Additionally when you read the abstracts, you also see notes that specifically state that the patients themselves said - almost universally (on the order of 90%) that the diet was very hard.

I agree with you on wanting the information for yourself and making the decision for yourself. But only relatively recently has that attitude been the case. For a long time, there was a "do whatever the doctor says, let him make the decisions" attitude. So the doctors had to figure out the initial approach that would work for hundreds of people, and only then modify and specialize advice for individuals. You care about how all of them treat you, they care about how each of them treat all of us. It's a different perspective. Honestly, I think that expecting more willpower out of people would be a significant help - not to mention following up with them instead of "see you in six months". I'm not saying this is a *good* reason to take the approach they have, just noting that it is a firmly entrenched, logical (from this approach) behavior, that will require a particular backtracking approach to get out of.

I agree that the pill is not a magic answer - the pharmaceutical companies will make it out to be a better thing than it is, and even if it's effective and doesn't have significant side effects, reducing reliance on external medications is a good thing, in my mind.

I also heard the 50% complaince rate in the US at a seminar. In my case it was pretty cut and dried as I had a positive Dx in a short time of treatment for my symptoms. Whether or not I adhere to the diet was strictly up to me. Someone correct me if I am wrong but did I not hear or read that 97% of those persons with Celiac Disease have not been diagnosed yet? I think there is a equal amount of blame to go to the doctor and the patient. I can't tell you the number of times I had a conversation with someone about my diet and the most common response was either "I don't have that" or " I could never do that diet". I have yet to meet the first person who would even say it "might" be what is wrong with them. How many times would a doctor have to tell the same person to change their diet before they just give up and start agreeing with the patient. I have a question about the average visit by a person to their family doctor. If you waited outside a doctor's office and could ask the patient when he/she went in if they wanted a prescription drug when they left what do you think they would say? I vote that the reason they were there to begin with was to get something they think would cure them. I don't think that answer would include a lifestyle change. The only reason the drug companies are making so much money is the same reason the oil compaines are so rich. The demand is out of sight. I have to admit since I have been on this diet the majority of persons I have met through my support group and this website are compliant with this lifestyle. I have said this before and I will say it again that anyone who was smart enough to find this website and ask questions should be smart enough and willing enough to give this diet a chance. If it doesn't work they can always go back to the medical profession. I truly believe if more people took the advice of doctors to change their diet more doctors might start suggesting it sooner.

Tom

[gfp]

I also heard the 50% complaince rate in the US at a seminar. In my case it was pretty cut and dried as I had a positive Dx in a short time of treatment for my symptoms. Whether or not I adhere to the diet was strictly up to me. Someone correct me if I am wrong but did I not hear or read that 97% of those persons with Celiac Disease have not been diagnosed yet? I think there is a equal amount of blame to go to the doctor and the patient. I can't tell you the number of times I had a conversation with someone about my diet and the most common response was either "I don't have that" or " I could never do that diet". I have yet to meet the first person who would even say it "might" be what is wrong with them. How many times would a doctor have to tell the same person to change their diet before they just give up and start agreeing with the patient. I have a question about the average visit by a person to their family doctor. If you waited outside a doctor's office and could ask the patient when he/she went in if they wanted a prescription drug when they left what do you think they would say? I vote that the reason they were there to begin with was to get something they think would cure them. I don't think that answer would include a lifestyle change. The only reason the drug companies are making so much money is the same reason the oil compaines are so rich. The demand is out of sight. I have to admit since I have been on this diet the majority of persons I have met through my support group and this website are compliant with this lifestyle. I have said this before and I will say it again that anyone who was smart enough to find this website and ask questions should be smart enough and willing enough to give this diet a chance. If it doesn't work they can always go back to the medical profession. I truly believe if more people took the advice of doctors to change their diet more doctors might start suggesting it sooner.

Tom

An interesting perspective and I largely mostly agree.

However... I think the problem is also that MD's talk to people as if they are idiots.

Last time I saw one Dr. (for anti-histamines) she asked me how I was and I said not so good because I'd been glutened and she asks if I had eaten a cake or something by mistake.

I mean do I look that stupid? I guess so....

Wheras she has the arrogance to display her certificates on the wall and be addressed Dr. I don't bother because practically everyone I work with has a doctorate and even putting it on a business card would be extremely pretentious.

If Dr's spoke to patients like adults instead of like learning challenged children then some of the patients might take more notice.

[Nancym]

Another thought is... perhaps the doctor is an idiot? I mean, they may not realize that gluten lurks in everything. I remember hearing that a doctor gets an average of 11-13 minutes spent on celiac disease in med school. Most people, probably doctors as much as anyone else, don't know crap about their food other than which restaurant they purchased it at, or which box they opened and how many minutes to microwave it for.

[pixiegirl]

........... Doll, I could point you to a bunch of people that have gotten off or reduced dramatically their drugs for managing their Type II through diet. There's a support forum I frequent where this story is played out time and time again.

I'm sure that's true and just for the record I was agreeing with you. And like you, if I could fix something with a dietary change I certainly would but sadly I don't think most people feel that way. I see it even on this list, its posted again and again... people who cheat occasionally, people who say their relationships suffer because they are so often sick and don't have any energy but then admit they cheat or aren't careful, so many people that just say they can't do it.

I would like to think that most doctors would talk to their patients about dietary changes but I don't know if that's true. A friend I grew up with is a doctor (internist) and she gets so frustrated with people that refuse to lose weight and then constantly have health problems... they usually say to her, "I can't understand why all this is happening to me". Even when she tells them why most refuse to listen or say they "can't do it" . Its a failure all around.

Susan

[eKatherine]

I'm sure that's true and just for the record I was agreeing with you. And like you, if I could fix something with a dietary change I certainly would but sadly I don't think most people feel that way. I see it even on this list, its posted again and again... people who cheat occasionally, people who say their relationships suffer because they are so often sick and don't have any energy but then admit they cheat or aren't careful, so many people that just say they can't do it.

I would like to think that most doctors would talk to their patients about dietary changes but I don't know if that's true. A friend I grew up with is a doctor (internist) and she gets so frustrated with people that refuse to lose weight and then constantly have health problems... they usually say to her, "I can't understand why all this is happening to me". Even when she tells them why most refuse to listen or say they "can't do it" . Its a failure all around.

Susan

You are lumping all dietary and lifestyle changes in together as if they are all equal. They are not. To go on a celiac diet, replacing your favorite foods with others of equivalent nutritional value, is an order of magnitude easier than going on a diet, taking off weight, and keeping it off. Only 2% of the people who try to lose weight reach their goal and maintain it. The body is not designed to go on a starvation diet and stay on it for the rest of your life. People get hungrier and hungrier, and eventually they break down, start eating, and gain all the weight back.

Now you can say that the numbers show that 98% of the people who need to have made the "choice" not to ignore their hunger for the rest of their lives, but the numbers show that medical science hasn't figured out what to do with obese people beyond giving them a diet that will probably fail and then passing judgment on them when it does.

If they offered you a treatment that had a 2% chance of success, would you take that as good evidence that you should have that treatment?