A Miracle?!? - Change In My Reaction To Gluten

[lucia]

I accidentally ate gluten. The chef screwed up my dish. She was supposed to leave the chunks of gluten cake out of my vegetarian pho. My server came rushing to my table five minutes after she'd served it to stop me from eating anymore. I'd already consumed two large hunks of gluten cake (which looks just like tofu).

Just six months ago, crumbs from a contaminated toaster landed me on the couch for five days with nasty intestinal cramps, fever, chills, muscle aches, exhaustion, etc. I'd seen the same set of symptoms over the past 1 and 1/2 years every time I reacted. After consuming gluten, I'd come down with cramps 6-8 hours later then cycle through the rest of the symptoms. This time, instead, my stomach bloated immediately. This was followed by burping and gas, then diarrhea. I was over it within 4 hours. I didn't even have to lay down. I had a nice dinner. Wow!

I haven't seen other people on the board recount stories like this. My doctor at the Celiac Center and Dr. Green who heads the Celiac Center in his book didn't mention anything like this. But my acupuncturist was unsurprised by this. She's told me that she thinks I'll be able to eat gluten again without a reaction once my digestive system is "stronger". (She has never recommended going back to pizza & beer nights, but she feels my body will be able to handle gluten occasionally.)

What do you guys think? What's gong on?

[ElseB]

What do I think? That you need a new accupuncturist. Or that she should stop dispensing advice about something she isn't qualified for. If you are diagnosed as celiac, eat gluten at your peril. Celiac Disease doesn't go away. Our bodies react differently at different times. Just because you feel fine doesn't mean the internal damage isn't taking place.

[eatmeat4good]

Yes, that is right... a new accupuncturist.

Your antibodies are down...so less reaction.

They used to think children outgrew Celiac...and they returned them to a gluten diet...that is probably how they found out about all the long term damage that can occur and the secondary auto-immune diseases...and lymphoma's.

Take a deep breath and be grateful you weren't laid out on the couch this time.

Say Whew!

But don't believe that people can go back to eating gluten if they are Celiac.

[Skylark]

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.

[Lori2]

But how do you determine if it is safe to go back to eating gluten? My son, diagnosed as an infant as celiac, "outgrew" it on a rice, banana and lamb diet and now has eaten a normal diet for years without symptoms.

Since I have discovered that I am gluten sensitive (not celiac) he did the EnteroLab testing, tested positive for gluten and casein and went gluten free. He has symptoms from consuming casein but none that he is aware of from gluten. Do you think it's safe for him to consume gluten?

[lovegrov]

Even if a small percentage of people with celiac can go into remission, please note that even folks with no symptoms need monitoring. How often is tit that you want to have an endoscopy?

richard

[AzizaRivers]

The only way we could know if someone is eating gluten without damage is for them to have regular endoscopies...maybe every month or so. Sounds expensive, and not worth it.

Gluten remission is extremely rare and I would imagine the trouble one would have to go through to find that out, and find out if it stays, would not at all be worth the food.

[Skylark]

I suspect people who go into remission notice that they aren't reacting to gluten mistakes any more, much like Lucia noticed her reaction was milder. "Monthly" endoscopy wouldn't be necessary. For starters, the median time to remission is on the order of two months. If you eat gluten for six and blood and biopsy are clean you're probably OK unless you start reacting again. With the non-celiac intolerance, it's a simpler matter of deciding whether you react or not.

Lori2, 30% of perfectly normal people have the Enterolab anti-gliadin antibodies. If I were your son, the Enterolab TTG was negative, I got no symptoms from gluten, and have no blood antibodies, I wouldn't worry about eating it at all.

This idea of celiac desensitization and remission is what's giving hope that a vaccine can be developed. Desensitization happens naturally so if we can mimic it, we get a vaccine.

[lucia]

To clarify, it's not only my acupuncturist who believes that recovery from gluten intolerance is possible. A close friend who is an acupuncturist was equally unsurprised. As she described it, 'your body is coming back into balance and will now begin to have the healthy responses it should have.' This statement is coming from the perspective of Traditional Chinese Medicine (TCM) and not a single practitioner.

Interestingly, when I first began to look into the possibilities for my recovery, I did uncover a journal article translated from Chinese that presented a case study of a patient with gluten intolerance who recovered in a Chinese hospital. In China, Western-trained MDs and TCM practitioners (including acupuncturists and herbalists) work side by side. The patient was under the care of both kinds of doctors. He was there for months and received daily treatment of herbs and regular acupuncture. Eventually, he was proclaimed cured and released, and his case was written up for the Chinese medical community. I could find no evidence for this possibility in Western literature (although Skylark has).

It's not like the change in my reaction to gluten happened suddenly. I've been having acupuncture 2x a week for over a year, along with herbs for part of that time. It's expensive and time-consuming. I know I'm lucky that I can afford it. It's taken a lot of faith to keep at it. But I've continued because I've seen remarkable change in my body throughout that time, and not only in my digestive system. Before this last incident, the most remarkable change had been that my periods went from dark and clotted and accompanied by a week of excruciating cramps to bright red and without pain. According to TCM, I wasn't just sick in my digestive system, but "imbalanced" so that many systems were effected.

In Western terms, perhaps what is now going on is (as Skylark suggests) healing of my gut to the point where I can tolerate gluten. That possibility makes sense to me. Is this a possibility for everyone on this board? I don't know, but would guess it's less likely for those with celiac than with gluten intolerance. Unlike others, I didn't struggle with symptoms my whole life, but can identify the start of my symptoms to seven years ago. I got really, really sick 1 and 1/2 years ago, seemingly out of nowhere.

Even if it did appear that I had full recovery in the future (still hard to believe in), I would never go back to pizza and beer nights. It seems likely that for many people, but especially me, gluten is not especially healthy. At this point, even though my body may not be reacting with an autoimmune response, it's still reacting as if gluten is toxic (& trying to expel it). My acupuncturist was very concerned that I would start eating gluten again in response to this incident, setting my recovery back in doing so. I won't. This was an accident, and, while I'm grateful to learn that I won't have to go to bed for five days when I have this kind of accident, I'm still paranoid about gluten. For good reasons.

[Skylark]

Lucia, I'm really glad to hear you're doing so much better.

[livelifelarge24]

I call bs. Doctors used to think that children with celiac would recover (really it was just because they were off gluten that Rey were better) but the patients that went back to gluten ended up with intestinal cancers. That is how we know that untreated celiac causes cancer. I want to not have this as much as the next person but I prefer to learn from the mistakes of the past and adhere strictly to te diet. It's not worth cancer to have a bite of cake here and there! I read a lot of books about celiac when I was first diagnose and that's where I got the info about the cancer. When I accidentally ingest gluten now I don't react nearly as bad as before but Your outside reaction doesnt always tell the story of what's happening inside.

[Skylark]

I call bs. Doctors used to think that children with celiac would recover (really it was just because they were off gluten that Rey were better) but the patients that went back to gluten ended up with intestinal cancers. That is how we know that untreated celiac causes cancer. I want to not have this as much as the next person but I prefer to learn from the mistakes of the past and adhere strictly to te diet. It's not worth cancer to have a bite of cake here and there! I read a lot of books about celiac when I was first diagnose and that's where I got the info about the cancer. When I accidentally ingest gluten now I don't react nearly as bad as before but Your outside reaction doesnt always tell the story of what's happening inside.

The studies are published; I took quite a bit of time to look them up for you and everyone else on the board. You are being closed-minded and even worse your post reads to me as if you are threatening people with cancer. EATL is extremely rare even in untreated celiacs with a global incidence at or below one in a million. Think about it. If EATL were common among untreated celiacs, 1% of the US population would have keeled over. If you're going to worry about cancer, worry about breast, lung, or prostate cancer. You have more risk of cancer from going out in the sunlight, breathing secondhand smoke, or eating grilled meat than you do from eating a bite of cake.

Agreed on staying 100% gluten-free, as there are multiple health reasons for it. Malabsorption and inflammation leads to a host of problems as we all well know. Also agreed that most celiacs do stay sensitive to gluten for life. There is just no sense clinging the incorrect idea that celiac disease never goes into remission.

[color-me-confused]

I accidentally ate gluten. The chef screwed up my dish. She was supposed to leave the chunks of gluten cake out of my vegetarian pho. My server came rushing to my table five minutes after she'd served it to stop me from eating anymore. I'd already consumed two large hunks of gluten cake (which looks just like tofu).

Here's a question: does the way that the gluten is cooked make a difference? If that gluten cake was cooked for a long time perhaps enough of the gliadin proteins were denatured, reacted with something in the cooking process, or something along those lines so you didn't get a severe reaction. This isn't unheard of, there was a paper published a few years ago on sourdough breads not causing an autoimmune reaction:

https://www.celiac.com/articles/752/1/Study-Finds-Wheat-based-Sourdough-Bread-Started-with-Selected-Lactobacilli-is-Tolerated-by-Celiac-Disease-Patients/Page1.html

[Skylark]

Here's a question: does the way that the gluten is cooked make a difference? If that gluten cake was cooked for a long time perhaps enough of the gliadin proteins were denatured, reacted with something in the cooking process, or something along those lines so you didn't get a severe reaction. This isn't unheard of, there was a paper published a few years ago on sourdough breads not causing an autoimmune reaction:

https://www.celiac.com/articles/752/1/Study-Finds-Wheat-based-Sourdough-Bread-Started-with-Selected-Lactobacilli-is-Tolerated-by-Celiac-Disease-Patients/Page1.html

Nope. Denaturation doesn't affect the celiac reaction at all. To break down gluten with heat to where you don't react, you have to burn it into soot. The special sourdough breads use 24-hour fermentation with a very specific strain of bacteria to break down the gluten. It's not something you'll run into by coincidence. Seitan (gluten cake) isn't even fermented so it would have lots of gluten in all of it's immunoreactive glory.

[alicewa]

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? Open Original Shared Link

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

[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? Open Original Shared Link

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.

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 "C