Scientific American Article - Aug 2009 Issue

[CeliacMom2008]

There is an excellent article in this month's Scientific American magazine (August 2009). It covers a wide range of information - from the basics of the disease to current treatments being researched. It also has several diagrams and illustrations that were very informative.

Happy reading!

[ENF]

There is an excellent article in this month's Scientific American magazine (August 2009). It covers a wide range of information - from the basics of the disease to current treatments being researched. It also has several diagrams and illustrations that were very informative.

Happy reading!

Glad you posted this. I expect to have the August issue in few days. It sounds like it's very interesting, as well as being an excellent source of accurate information in the publicity and public awareness department.

[Lisa]

I am really looking forward to the article. I hope someone can post it here, when available.

[CeliacMom2008]

The July issue is still the one available online. I'll watch for the August to come up and put a link to it when it does.

[CeliacMom2008]

The article is now available online: Open Original Shared Link.

Happy reading!

[Lisa]

I just glanced through this. Facinating. I plan to sit down and study it later. Thank you so much for putting this up for us.

[Gemini]

The article is now available online: Open Original Shared Link.

Happy reading!

This article is extremely interesting and a good read BUT I one small issue with Dr. Fasano. He states in this piece that sticking perfectly, over years, to any diet for medical purposes is notoriously challenging. For such reasons, diet therapy is an incomplete solution.

Sorry, but I totally disagree. There are many Celiacs who just take it all in stride and have the ultimate reward of getting their health back without the aid of the medical profession, who can be known to give very poor dietary advice. I understand doctors and nurses can be just as eyeball deep in denial about food as the rest of the population but saying things like this is self defeating. As I have said before, diabetics have it much harder than Celiacs because they cannot have sugar and EVERYTHING today contains sugar except whole foods. I feel they are much more restricted, by far, than those with celiac disease. Is the gluten-free diet challenging? Sure, at first, but it becomes second nature after the learning curve is mastered. I can't even remember what it's like to eat wheat and wouldn't again no matter what is developed for treatment. I think Dr. Fasano deserves huge credit for studying this disease but to say the diet is an incomplete solution is just plain wrong. Doctors are never happy unless they have pills to offer!

[lizard00]

Thanks for posting the link! I knew it was coming and was hoping that I wouldn't forget to check into it.

[Lisa]

This article is extremely interesting and a good read BUT I one small issue with Dr. Fasano. He states in this piece that sticking perfectly, over years, to any diet for medical purposes is notoriously challenging. For such reasons, diet therapy is an incomplete solution.

Sorry, but I totally disagree. There are many Celiacs who just take it all in stride and have the ultimate reward of getting their health back without the aid of the medical profession, who can be known to give very poor dietary advice. I understand doctors and nurses can be just as eyeball deep in denial about food as the rest of the population but saying things like this is self defeating. As I have said before, diabetics have it much harder than Celiacs because they cannot have sugar and EVERYTHING today contains sugar except whole foods. I feel they are much more restricted, by far, than those with celiac disease. Is the gluten-free diet challenging? Sure, at first, but it becomes second nature after the learning curve is mastered. I can't even remember what it's like to eat wheat and wouldn't again no matter what is developed for treatment. I think Dr. Fasano deserves huge credit for studying this disease but to say the diet is an incomplete solution is just plain wrong. Doctors are never happy unless they have pills to offer!

I understand what you are saying Gemini, but we have to remember that the US, Canada and European countries have made great inroads in gluten free labeling disclosures. That's not the case in other countries. I cannot imagine the nightmare of being gluten free in eastern Europe or Asia as well as other areas of the world.

I think it also depends on how motivated a person is, how sick they were and their level of dedication to good health. I think we all know that one cheat every once in a while will not be the death of us. But the long term ramifactions of consuming gluten for those of us with Celiac should be daunting enough not too.

I too agree, that eventually there will be a pill that's pushed. Not for me though.

[missy'smom]

This article is extremely interesting and a good read BUT I one small issue with Dr. Fasano. He states in this piece that sticking perfectly, over years, to any diet for medical purposes is notoriously challenging. For such reasons, diet therapy is an incomplete solution.

Sorry, but I totally disagree. There are many Celiacs who just take it all in stride and have the ultimate reward of getting their health back without the aid of the medical profession, who can be known to give very poor dietary advice. I understand doctors and nurses can be just as eyeball deep in denial about food as the rest of the population but saying things like this is self defeating. As I have said before, diabetics have it much harder than Celiacs because they cannot have sugar and EVERYTHING today contains sugar except whole foods. I feel they are much more restricted, by far, than those with celiac disease. Is the gluten-free diet challenging? Sure, at first, but it becomes second nature after the learning curve is mastered. I can't even remember what it's like to eat wheat and wouldn't again no matter what is developed for treatment. I think Dr. Fasano deserves huge credit for studying this disease but to say the diet is an incomplete solution is just plain wrong. Doctors are never happy unless they have pills to offer!

I agree that the diet is not that bad. We still have SO many choices. However there are those who are in the care of/at the mercy of others and for those people I hope that this will be of help. I have a family member who would benefit if some kind of drug is available. If it comes to be, it will be too late for her, but it could help others in the future. As is, she is going undiagnosed and not recieving proper care so is left living out the consequences, which I wouldn't wish on anyone. She is in a care facility and they can't force her to do anything she doesn't want to do and her mental health issues stemming from what I believe to be this disease cause her to refuse medical care because she thinks she is fine, and her doc doesn't care enough, isn't educated enough or figures why bother, there's no way they can manage a gluten-free diet or prevent her from helping herself to whatever food is available etc.. As much as I am not a fan of popping a pill to solve all our problems, if there was a drug available, then she might get a better chance at care than she does now because, unfortunately that is easier for those whose care she is in to handle.

[Tim-n-VA]

That could just be the semantics of the terms - "sticking perfectly" versus "many Celiacs".

Cross contamination is a fact of life so it is difficult to stick perfectly to the diet.

It seems like a weekly topic for someone to post that they can't do the diet, that its too hard, etc. Despite many Celiacs taking it in stride, there are at least some who have lots of trouble with it.

[Darn210]

It seems like a weekly topic for someone to post that they can't do the diet, that its too hard, etc. Despite many Celiacs taking it in stride, there are at least some who have lots of trouble with it.

. . . and I think we all know people who would rather not be tested for fear of the diet. If they don't actually "know" then they can pretend they don't have it . . . but if they had a pill, then it would be something they would investigate. The "head-in-the sand" mentality applies to many medical situations, not just celiac disease.

That being said . . . I think the doctors that have been in this field for awhile don't realize how much things have changed/improved in the food industry over the last few years. I've only been at this a little over two years and have been thrilled with some of the things that have happened . . . can you say Betty Crocker?

Oh . . . and thanks CeliacMom2008 for posting this link . . . I'll be passing it on.

[Tim-n-VA]

My brother's doctor told him that unless his symptoms were too much to handle he recommended not being tested despite a 50+ year history of "IBS" and a sibling with Celiac.

[Gemini]

I agree that the diet is not that bad. We still have SO many choices. However there are those who are in the care of/at the mercy of others and for those people I hope that this will be of help. I have a family member who would benefit if some kind of drug is available. If it comes to be, it will be too late for her, but it could help others in the future. As is, she is going undiagnosed and not recieving proper care so is left living out the consequences, which I wouldn't wish on anyone. She is in a care facility and they can't force her to do anything she doesn't want to do and her mental health issues stemming from what I believe to be this disease cause her to refuse medical care because she thinks she is fine, and her doc doesn't care enough, isn't educated enough or figures why bother, there's no way they can manage a gluten-free diet or prevent her from helping herself to whatever food is available etc.. As much as I am not a fan of popping a pill to solve all our problems, if there was a drug available, then she might get a better chance at care than she does now because, unfortunately that is easier for those whose care she is in to handle.

I hear what you are saying because, as we speak, my father is slowly dying from celiac disease and neither he nor the rest of my dim-witted family seem to care. He has been diagnosed recently with beginner dementia and I totally believe it's all from undiagnosed celiac disease. He looks like the poster child for it, as did I, and I think he is too confused to process what I try to tell him about it. So those who should be watching out for him are not and it sickens me. The rest of my family are the pill types who will not be responsible about their health unless a pill is involved.

I have also told my husband under no terms will I EVER go into a care facility of any kind. I am not resigned to the fact that all people end up in one either. Can you imagine trying to get good gluten-free food in a nursing home? If we live in denial about food to such an extent in today's world, I don't think anything will change with the elderly anytime soon, especially if we go to socialized medicine. I cook everything I eat and get quite creative with it but that isn't going to happen if I become what most people fear will happen as they age. I am convinced, though, that the majority of memory issue problems are food based so we strict Celiacs should be OK.

As far as the problem of CC is concerned, I don't personally think it's as big of a problem as some think. If you live on your own and are responsible for your own food (which is not everyone, I agree) then handling CC is another problem which gets much easier with the learning process. I think fear of CC is a bigger problem than CC itself. If the newly diagnosed learned the disease process well in the beginning, then they would be knowledgeable about how it occurs as opposed to not feeling well after eating and blaming everything on CC. There are other sensitivities that may be the culprit also. For those who read the article, Dr. Fasano made the point well about having to ingest gluten for an autoimmune reaction to occur. I'm not saying it isn't hard for some but there may be reasons for that which could be worked out with a little effort.

The other problem is the cost of the meds, if they ever develop anything which might even work well. I know many, many people who stopped taking meds that helped them because of cost. They are not going to make this drug cheaply and I highly doubt they will give it away either. They also will not prescribe it unless you have a definitive diagnosis so that could be another roadblock for those who are self diagnosed.

[tarnalberry]

Sorry, but I totally disagree. There are many Celiacs who just take it all in stride and have the ultimate reward of getting their health back without the aid of the medical profession, who can be known to give very poor dietary advice. I understand doctors and nurses can be just as eyeball deep in denial about food as the rest of the population but saying things like this is self defeating. As I have said before, diabetics have it much harder than Celiacs because they cannot have sugar and EVERYTHING today contains sugar except whole foods. I feel they are much more restricted, by far, than those with celiac disease. Is the gluten-free diet challenging? Sure, at first, but it becomes second nature after the learning curve is mastered. I can't even remember what it's like to eat wheat and wouldn't again no matter what is developed for treatment. I think Dr. Fasano deserves huge credit for studying this disease but to say the diet is an incomplete solution is just plain wrong. Doctors are never happy unless they have pills to offer!

Statistics disagree with you. The majority of celiacs are NOT strictly gluten free, and do *intentionally* cheat on the diet, according to random sample studies. We all know that it is very difficult to avoid every instance of contamination without making significant life-style changes, as well. Which does make the diet, when used in the population of celiacs as a whole, and incomplete solution. A solution, but not a complete one.

[Takala]

Quote from the article, page 5

With an eye toward blocking the intestinal barrier defect, I co-founded Alba Therapeutics to explore the value of a zonulin inhibitor named Larazotide. (I am now a scientific adviser for Alba and hold stock options, but I no longer participate in making decisions for the company.) Larazotide has now been tested in two human trials examining safety, tolerability and signs of efficacy in celiac patients who ate gluten. These were gold-standard trials

[CeliacMom2008]

I had no idea anyone would find a single thing to fault in the article. Being upset that Dr. Fasano said the diet is challenging is mind boggling to me. I've referred to myself as the Mary Poppins of Celiac. I have a very positive attitude about how doable the diet is...for us. But I have the time and ability to educate myself on the disease and gluten free cooking. I am also fortunate enough to be able to afford the higher costs that can be associated with gluten free. And I have the time available to prepare fabulous gluten free meals. And lastly, I'm a Mary Poppins kind of person about everything!

Now, if I was a single mother of 3 kids, working a full time job outside of the home, possibly with limited education or limited access to the internet, and struggling to make ends meet both in terms of time and finances, (or any number of other circumstances) it could be a different story.

The diet is difficult for many people, and I suspect it has its easier and more difficult moments in everyone's lives. I'm sure my son will find it a real pain when he goes on his first date. I'm sure he'll wish not to be a Celiac when he moves to college and possible dorm life. I worry that he may someday be an old man with no family to look after him and at the mercy of others to see that he eats healthy and tasty meals. But thankfully, right now he'll tell you the diet is "no big deal."

If the life long diet weren't challenging, this forum probably wouldn't exist. Why would it, if it was so easy?? There's a whole section called "Coping." That right there indicates there must be some sort of challenge. And as for an "incomplete solution" - it is an incomplete solution. For some people a pill or other treatment would be a better answer for them. Perhaps not for everyone, but that would still mean it's "incomplete."

Please don't rip apart and over analyze the comments made by a man who has dedicated his life's work to helping people with Celiac Disease. Our society is quick to pick a part every statement made and to look for things to find fault with all too often. Instead, how about a "Wow. That article is going to really help build awareness of the seriousness, history, treatment, diagnosis, and research surrounding Celiac Disease. Thanks, Dr. Fasano and Scientific American for helping to bring accurate information to more people so that more doctors and patients can become educated about a very serious disease and hopefully reduce the number of people suffering from Celiac."

I personally forwarded it on to all of my employees and asked them to forward it onto anyone they knew who had questions about Celiac or who might possibly have Celiac or know someone who had Celiac. So thanks, Dr. Fasano and Scientific American. I appreciate your article!

[ENF]

Imagine being a Celiac patient who is hospitalized, with nobody as their advocate, and the meals are prepared by a staff that doesn't have a clue - and the hospital's "dietician" has never learned about gluten intolerances, or how to feed people who have them. Recently, I was in the hospital and this could have happened to me, but fortunately my wife was on the scene to make sure that they didn't poison me.

We need the medicine, at the very least for those who can not prevent themselves from being exposed to gluten in hospitals and other care facilities.

If we do not support this research, who will?

[Takala]

Actually, I don't anticipate a long lifespan. When I had day surgery last year, I instructed my spouse to not, under any circumstances, leave me alone in recovery nor let them give me food- if I had to stay, he was to go to the car and get the packed bag of gluten free food. Given the total incompetence and greed of the medical profession, if I lost my spouse and was aged, I would be a goner anyway because I certainly wouldn't expect the hospital or nursing care facility to be able to get my medication correct.

They have such a bad track record.

I do anticipate, if the social pressures become enormous enough, that the status quo to be a medicated person back on gluten contaminated foods, instead of an unmedicated person eating gluten free foods to the best of her ability, to have to start my own blog up for the few refugees who would want to continue on with just eating safely and normally for the gluten intolerant instead of a wheaty wanna be. Because in my opinion, most of this is "desire" is driven by people's emotional needs to fit in with the rest of the population and not be different, not health, combined with financial motivation from the drug manufacturers. It would be almost heartbreaking to have most of my peer group reject me, but I am cynical enough and now certainly emotionally strong enough that I would be able to withstand it !

[tarnalberry]

guys, haven't you read the stuff he's put out about the zonulin drug? he specifically states that it is NOT a substitute for a gluten free diet. it's an adjunct to help with contamination. I think we're seeing forest fires instead of the campfire in front of us... (yes, that is the point of the analogy - one can become the other, but the latter can be helpful and good)

[balmerhon]

I just saw this thread after reading the article in SA.

I cannot BELIEVE any of you would object to a pill that would help with celiac. My son has not been diagnosed (we get results of his biopsies tomorrow - all blood tests are negative). If he has it and there were a pill that could help in any way, I would be SO grateful. Why? Well first of all, because our 2 week trial of gluten free was a disaster. My son is 3. Too young to understand why he can't have the foods he likes but too far along in eating solids for him to not know what he's missing.

He is a SUPER picky eater and the gluten free food went over like a lead balloon. I gave up after 2 weeks because I feared he'd lose weight which he can't afford to do. Obviously, if he is diagnosed for sure, we'll have no choice.

Furthermore, we are on such a tight budget that 2 weeks of gluten free sent us into sticker shock.

Now I am an educated, computer literate person who also enjoys cooking. Yet I am filled with dread over the prospect of a positive diagnosis.

I am the first person to be cynical about the US health care system (I lived in the UK for 8 years so experienced nationalized care there), but I am still all for groundbreaking appropriate research and medication.

Give Dr Fassano some credit. It is largely down to him that celiac is now recognized as much as it is in the US. It will take time, but let's hope that education and exposure will continue to improve the lives of those with celiac and food intolerances.

[Takala]

It's pretty obvious that a "pill" would be used in place of a gluten free diet.

Study how pharmaceutical products are marketed. They (advertising writers) have experts in human behavior working to create a need whether or not it exists, and creating feelings of deprivation, hardship, and social stigmatism unless the "new and improved" thing becomes a necessity.

Just look at some of the responses we are getting here. Somebody anticipates that medication is going to be a cheaper alternative than a diet modification, when we have medications today that can cost $200 to $500 a refill.

[balmerhon]

Don't get me wrong. I totally agree the pharm industry is out to get every cent they can. One thing that totally blew my mind upon my return to the US this year was all the pharmaceutical advertisements on TV. Frankly, they should be illegal.

That said, I still wholeheartedly believe that for some, medication is necessary and the research to make it hugely important.

I also believe there needs to be a happy medium for so many diseases - a combination of lifestyle changes AND medication.

If someone said to me today (which they may well do), your son has celiac, you need to get him on a gluten free diet now. But then they said, here's a pill that will help reduce the effects of gluten on his system should he ingest any. I'd jump. Yes, there are those who will abuse that pill, no doubt. Or maybe not. Maybe that pill has a side effect to eating gluten as well, (you get D or V), but it protects against long term intestinal damage. I don't know. I just think it's foolish to automatically say pills are not in your best interests ever.

My son's doctor is Dr Fassano's colleague (we're in Maryland). If he *does* get a positive Dx today, I will certainly be asking about how the trials are going and what the long-term prospects are.

And then I will pray I can get my son to eat gluten free food alternatives... because there is nothing more stubborn than a 3 year old picky eater.

[momxyz]

balmerhon,

if you think working with a 3 year old to change their diet is hard, try working with a 17 year old.

At least while he in your home you have a captive audience!

My daughter is trying very hard to avoid gluten containing foods and does well for the most part. But is a normal busy teenager, working and then going out with friends. She has a hard time when she's with friends, and is having to learn to plan ahead so that she has alternatives with her. Its a big change. Fortunately she herself has always been focused on good health and so she is trying.

(Had it been her brother at the same age, compliance would have been a lot worse!)

I myself am an advocate of avoinging drugs because although their actions are targeted to one purpose, their side effects are not always known and predictable.

But they have their place.

[nasalady]

And then I will pray I can get my son to eat gluten free food alternatives... because there is nothing more stubborn than a 3 year old picky eater.

What does your son like to eat?

Do you live near a Trader Joe's market? They have a wonderful boxed gluten free macaroni and cheese (with rice noodles) that my 3 year old son loves! Both of my toddlers also eat gluten free hot dogs and Bush's baked beans, or my homemade chili. They also like Trader Joe's gluten free pastas and mini tacos (in the freezer section). None of these foods are outrageously expensive.

Also, Whole Foods carries Pamela's baking mix and bread mix. The bread is phenomenal....it tastes very much like wheat bread, and my toddlers love pancakes made with Pamela's baking mix (especially if I add blueberries). Pamela's mixes are pricey, but worth it.

P.S. Fasano's research is crucial; the cytokine zonulin, which "opens the barn door and lets the horses out" so to speak, is the latest suspect in the mystery of how autoimmune diseases occur in general.

I have 7 AI diseases so far (and counting)....I have one adult daughter with Hashimoto's thyroiditis, and another with lupus and Addison's disease. One of my grandchildren has been diagnosed via biopsy with celiac disease and two others are at least gluten intolerant if not celiac as well.

My entire family has been devastated with AI diseases; RA, lupus, Sjogren's, Graves disease....you name it, someone in my family has it. Or died from complications of it.

As a scientist AND as a poster child for AI diseases, I am excited about Fasano's research. There are board members with refractory sprue who do not improve on the gluten free diet....has anyone been thinking of them?? I hope he does develop medication that will help them. It is hard to believe that there are people in this forum who are actually suspicious of his motivations for doing this research.

JoAnn