91 replies to this topic

[Skylark]

Isn't the homeopathic product by the endocrinologist in tulsa (I think it was called Intestinal Calm) useful in treating celiacs? There was a whole review on this and I'm really really interested in trying it out. Trouble is its not fad approved. Has anyone else here heard of it or knows of its ability to desensitise people from gluten? http://alturl.com/enief

Didn't Dr. Naram in NY have something to take care of his celiac patients with too?

Hint: His study was probably flawed so badly the only place he could publish it was an alternative health rag. For starters, it's using Enterolab tests as an endpoint. When you are using a test that is not validated to measure your endpoint, how can you possibly claim results??? If this study and product were real, GI doctors would be shouting it off the rooftops.

[burdee]

Yes, some people can eventually go back to eating gluten without symptoms or damage even if they are celiac. This is well known in the medical community, and has been written up in multiple articles. Mass denial of the possibility of recovery from celiac, however slim, on this board is unfortunate.

Gluten intolerance cam come and go too, depending on gut health. There is growing evidence that food intolerances and autoimmunity are a result of dysbiosis and leaky gut. Heal the gut and establish normal bacterial flora, and the food intolerances improve or disappear because food stays on the correct side of the intestinal wall and outo f the bloodstream where it causes trouble. This is the reason Alvine is working on a zonulin blocker drug.

I dug up some info on celiac remission for someone else on the board in this thread.

http://www.celiac.com/gluten-free/topic/85651-transient-celiac-autoimmunity-in-a-adult/page__p__736328#entry736328

How many of those people, who return to eating gluten and don't have gut symptoms, remain free of other autoimmune diseases for the rest of their lives?? Freedom from gut symptoms ('classic' celiac symptoms) doesn't necessarily mean freedom from damage from gluten antibodies in other parts of the body.

[Skylark]

How many of those people, who return to eating gluten and don't have gut symptoms, remain free of other autoimmune diseases for the rest of their lives?? Freedom from gut symptoms ('classic' celiac symptoms) doesn't necessarily mean freedom from damage from gluten antibodies in other parts of the body.

Eh... I give up. Live in your "celiacs can never, ever recover" world if you like. I believe what doctors see in the clinic, which is occasional full recoveries from gluten intolerance and even celiac. The immune system is quite plastic and it does sometimes "forget" antigens if it doesn't see them for long enough. (This is why you have to go back for tetanus shots every ten years and why kids with terrible peanut allergies can sometimes eat peanuts as adults.)

I won't be back to this thread. The negative board-think and brainwashing is starting to upset me.

[IrishHeart]

There is a major difference between a food sensitivity, a food intolerance and autoimmune celiac disease. Perhaps SOME people with sensitivities and intolerances can occasionally ingest gluten without a problem.

And there is a difference between REMISSION and a CURE.

Following a gluten-free diet is how to achieve remission. When there is a cure, please, let me know.

I am sorry, but I do not think your less painful reaction is a "miracle", but it is good news for you! Glad you recovered so quickly.

Skylark, I have read about this zonulin blocker they are working on--that would be great! Dr Fasano's recent article in Scientific American mentions it.

Can someone who "heals their gut" once again consume gluten-- and not suffer the consequences? I don't know. I had a Naturopathic and Integrative Med doctor and an acupuncturist all tell me I could heal my leaking gut and be healthy once more. That ALL "dis-ease" is curable. I spent thousands of dollars on supplements, followed every suggestion, did eliminations diets --for nearly 2 years---- and achieved.....worsening health. The only "cure" for the dozens of symptoms I suffered was NO GLUTEN.

Everyone has a THEORY and we all have to decide what's best for our own bodies. There is no way in hell I would consume gluten again and become the sick woman I was.

Would I love to see a CURE for celiac? You BET!

But if there were any substantial scientific evidence that there is a way for CELIACS to safely consuming gluten without dire consequences, then it would be front page news.

Until then, in my humble opinion, I have to think no one with celiac is safe reverting to a gluten -filled diet. The very real associations with lymphoma and other autoimmune diseases are well-documented, validly researched and undeniable.

We can still hope for a cure or a vaccine. Hell, we can hope that the mainstream medical community gets better at even RECOGNIZING it for what it is---the fact that it takes an average of 11 years to be diagnosed (me, included) tells me that this thing is bigger than anyone ever imagined.

[lucia]

I just wanted to thank Skylark for providing us with links to the latest medical research on this topic. I really appreciate having a scientist on our board!

[IrishHeart]

I read a few of these studies and unfortunately, the results do not say that celiac is "cured"...please read the entire article...for example, the one that claims DH can be cured concludes with....

"There is concern, he added, that people who don't stick with the diet may have a higher risk of lymphoma and other complications. Consequently, Zone suggested that patients with dermatitis herpetiformis who decide to stop the diet have their blood tested occasionally to look for celiac antibodies, even if their skin symptoms never return.

Luckily, a small percentage of them will be able to enjoy a normal diet and a life without dermatitis herpetiformis medication, Zone said -- which is a very good thing. Dermatitis herpetiformis is "probably the most uncomfortable skin disease you can have," he said. "It just itches night and day."

....um, may have a higher risk for lymphoma and other complications???.....so they can go without DH medicine, but at what other risks???

There needs to be more follow up done on people who choose to forego the gluten-free diet before anyone declares it safe for any of us.

[ElseB]

Well, I guess I'm just one of those "negative" people who doesn't buy the stories of people being "cured" of Celiac. But then again, I'm also someone who doesn't find the gluten free difficult (and I follow the diet very strictly and never cheat). If they developed a pill for us to take everyday, I wouldn't take it.

[heidi g.]

just because you have gluten intolerance DOES NOT MEAN U HAVE CELIACS DISEASE. gluten intolerence can develop from alot of things. leaky gut syndrome is one of them. a year ago i took an antibiotic for 3 weeks to prevent an infection and it hurt my stomach so bad and ever since ive had this gluten intolerence. when you have a biopsy it checks for damaged villi. my villi was indeed damaged but my blood work has been normal everytime. celiacs disease is not the only thing that damages your intestines. thats what doctors dont understand. damaged villi can of course make you intolerant because 1. when gluten is digested it usually hangs around in the gut until fully digested and since the intestine is damaged it will act as the gluten being an invading bacteria. my doctor told me to try a gluten free diet and sent me on my way. so i decided to do my own research since i am in medical school and resources are alot easier to get in my schools medical library. if you can replace all your villi to the normal level (can take years to do so) it is possible to slowly reintroduce the foods you once feared back into your diet. but if your blood tests confirmed you do have celiacs disease, i wouldnt get my hopes up. and yes it is possible to have a negative blood test and a positive biopsy. but the biopsy only checks for damage and the blood tests for antibody's. i ate alot of gluten containing products before my blood test and still came back normal. the antibiotic i believed damaged my gut and i believe i can heal it

[heidi g.]

and fyi- theres a difference between celiacs disease and gluten intolerence- these are my beliefs due to what ive researched. celiacs disease can go away in children when they hit adult years. celiacs disease is usually permanent in adults. also if you have gluten intolerence it does not mean u have celiacs disease. when you have a damaged gut you develop food allergies and intolerences. gluten is most common because it is bad for you and hangs around in your body. they also say celiacs disease is inherited from family members who have had it. it doesnt run in my family no one in my family has ever had it. how do i know? my mom is obsessed with family history. she has found all our family members from back to the 1800's i believe. im doing several studies on myself (diets) i am still going to stay gluten free of course but im also going to do the leaky gut syndrome diet and the candida diet. its the fastest way to heal the gut. why does america have all these stomach problems in the first place? just look at the mcdonalds menu. you have to pay so much stinkin money to stay healthy and they basically give away cheeseburgers to get you fat. i will study the way i eat, how soon again ill be able to exercise, and my improvement in health so i can make the perfect diet to help heal anyones digestive system. i believe theres much much more than going just "gluten free" you need to heal the damages in your gut

[IrishHeart]

celiacs disease can go away in children when they hit adult years. celiacs disease is usually permanent in adults. they also say celiacs disease is inherited from family members who have had it.

You're in medical school. That's great--congratulations! What school do you attend?

Just to clarify:

Would you kindly tell us where you found this documented medical research that states "Celiac Disease can "go away" in children when they hit adult years."

While Celiac can go into remission (many of us are proof of that) it does not "go away" exactly. Many of the people suffering from various autoimmune diseases and lymphomas (now in their 50's and 60's) are those babies whose parents were told that it was okay to reintroduce wheat back into their diets. They were fed the famous "banana diet" as little ones, seemingly recovered and then, resumed a regular diet, only to suffer various digestive diseases and other complications their whole lives. It was once thought to be something you can "outgrow". Not anymore. " If you are a biopsy-proven celiac, you will not outgrow the disease since celiac disease is now considered to be an autoimmune disorder like diabetes and rheumatoid arthritis." (The Center for Celiac Research in Maryland)

Celiac disease IS a genetic disorder. And yes, some folks carry the gene that is linked to celiac and never even develop it. But, just because only one family member has a definitive diagnosis, it does not mean that others did not suffer from it; it is possible they just were never diagnosed.

It is doubtful that family histories dating from the 1800's would indicate celiac disease as a cause of death, as it was not exactly recognized as a clinical disease back then.

Excerpted from wikipedia:
"Aretaeus of Cappadocia, living in the second century, recorded a malabsorptive syndrome with chronic diarrhoea. His "Cœliac Affection" (coeliac from Greek κοιλιακός koiliakos, abdominal) gained the attention of Western medicine when Francis Adams presented a translation of Aretaeus' work at the Sydenham Society in 1856. The patient had stomach pain and was atrophied, pale, feeble and incapable of work. The diarrhoea manifested as loose stools that were white, malodorous and flatulent and the disease was intractable and liable to periodic return. The problem, Aretaeus believed, was a lack of heat in the stomach necessary to digest the food and a reduced ability to distribute the digestive products throughout the body, this incomplete digestion resulting in the diarrhoea, He regarded this as an affliction of the old and more commonly affecting women, explicitly excluding children. The cause, according to Aretaeus, was sometimes either another chronic disease or even consuming "a copious draught of cold water".

The paediatrician Samuel Gee gave the first modern-day description of the condition in a lecture at Hospital for Sick Children, Great Ormond Street, London in 1887. Gee acknowledged earlier descriptions and terms for the disease and adopted the same term as Aretaeus (coeliac disease). Unlike Aretaeus, he included children in the scope of the affliction, particularly those between one and five years old. Gee found the cause to be obscure and failed to spot anything abnormal during post-mortem examination (the lining of the small bowel quickly deteriorates on death). He perceptively stated "if the patient can be cured at all, it must be by means of diet." Gee recognised that milk intolerance is a problem with coeliac children and that highly starched foods should be avoided. However, he forbade rice, sago, fruit and vegetables, which all would have been safe to eat and he recommended raw meat as well as thin slices of toasted bread. Gee highlighted particular success with a child "who was fed upon a quart of the best Dutch mussels daily". However, the child could not bear this diet for more than one season.

Christian Archibald Herter, an American physician, wrote a book in 1908 on children with celiac disease, which he called "intestinal infantilism". He noted their growth was retarded and that fat was better tolerated than carbohydrates. The eponym Gee-Herter disease was sometimes used to acknowledge both contributions. Sydney V. Haas, an American paediatrician, reported positive effects of a diet of bananas in 1924. This diet remained in vogue until the actual cause of coeliac disease was determined.

While a role for carbohydrates had been suspected, the link with wheat was not made until the 1940's by the Dutch paediatrician Dr Willem Dicke. It is likely that clinical improvement of his patients during the Dutch famine of 1944 (during which flour was sparse) may have contributed to his discovery. The link with the gluten component of wheat was made in 1952 by a team from Birmingham, England. Villous atrophy was described by British physician John W. Paulley in 1954. Paulley was able to examine biopsies taken from patients during abdominal operations. Dr. Margo Shiner, working on Prof. Sheila Sherlock's team at the Postgraduate Medical School in London, described the principles of small bowel biopsy in 1956.

Throughout the 1960's, other features of coeliac disease were elucidated. Its hereditary character was recognized in 1965. In 1966, dermatitis herpetiformis was linked to gluten sensitivity"

That said, while villous atrophy can be reversed, it is not likely that people with Celiac are able to consume gluten grains safely.(Unless there is a vaccine developed??; according to a recent article by Dr. Fasano, researchers are working on this as we speak. ) And yes, of course you can achieve "good gut health" and live a full and happy life!

Best wishes to you!

[heidi g.]

my teachers do not let us take information from wikipedia. guess there was a problem with their site not always being completely truthful. anyways- celiacs disease can go away in a child. ive interviewed 26 adults who have had celiacs disease as a child and it has disappeared around age 16-25 and has not come back so far. 1 woman, however, has had her celiacs disease reappear at age 28. the rest are living fine. the body is a mystery and anything can happen to it. it can magically heal its self if it wants. you can believe what you want of course but i will continue to study this disease from numerous different sources. i have looked on the internet of course but i rather interview actual gi specialists and nutritionists who actually deal with it on almost a daily basis. not wikipedia lol

[jswog]

i rather interview actual gi specialists and nutritionists who actually deal with it on almost a daily basis. not wikipedia lol

But there are VERY VERY few GIs or nutritionists who do deal with this on even an almost daily bases and even fewer have much of an understanding of this disease. Why do you think it takes on average as long as it does for people to get a proper diagnosis?

[jswog]

And, BTW, you never did answer Irish's question about where you are in med school. And I'm a bit surprised that you are 21 and already in med school. Most people haven't even finished a Bachelor's degree by that age...

[Skylark]

And, BTW, you never did answer Irish's question about where you are in med school. And I'm a bit surprised that you are 21 and already in med school. Most people haven't even finished a Bachelor's degree by that age...

This thread just continues to appall me. You can't be pressing people to reveal personal details on the Internet. Her location and school are nobody's business but her own. Besides, finishing ones bachelors at 21 is normal if you go into a 4-year program right out of high school. There are also some countries where medical school is done directly out of high school as a bachelors.

And by the way, Wikipedia is notoriously unreliable because any jackass with a computer and an opinion can edit it. They try to keep the garbage out, but misinformation can stay for quite a while until it gets weeded out.

[IrishHeart]

This thread just continues to appall me. You can't be pressing people to reveal personal details on the Internet. Her location and school are nobody's business but her own. Besides, finishing ones bachelors at 21 is normal if you go into a 4-year program right out of high school. There are also some countries where medical school is done directly out of high school as a bachelors.

And by the way, Wikipedia is notoriously unreliable because any jackass with a computer and an opinion can edit it. They try to keep the garbage out, but misinformation can stay for quite a while until it gets weeded out.

Wow... hold on everyone. Please.

Excuse me please, but I was congratulating this young gal for attending medical school. That's all I said!!
I think it's GREAT!
The question was not at all meant to be intrusive. It was conversational.


Wow...
I am being totally misunderstood here.

Before you all get in my face about using wikipedia (and by the way, not that it matters, but I am a retired English Professor and I KNOW wikipedia isn't considered the best place for research. but, thanks.) I was just using it to quickly provide some background info.

The information I posted on how celiac came to be a "medical diagnosis" is pretty interesting and can be found in a variety of RELIABLE sources, most recently ON THIS SITE:

http://www.celiac.com/articles/22013/1/Willem-Karel-Dicke-Pioneer-in-Gluten-free-Diet-in-the-Treatment-of-Celiac-Disease/Page1.html

and in the remarks of the Dr. Stefano Guandalini, M.D. of the Celiac Disease Center at the University of Chicago.

http://www.celiacdisease.net/assets/pdf/SU07CeliacCtr.News.pdf

I merely used wikipedia as it was quicker. In fact, it looks like someone posted to wikipedia from HIS article.

But I CAN provide MORE sources if you wish....gosh, I was only trying to help.

But if you guys are going to get grouchy about it, I can be of more use elsewhere....see ya.
best wishes!