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


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#1 lucia

 
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Posted 25 October 2011 - 02:17 PM

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?
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#2 ElseB

 
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Posted 25 October 2011 - 02:20 PM

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.
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#3 eatmeat4good

 
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Posted 25 October 2011 - 02:32 PM

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.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#4 Skylark

 
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Posted 25 October 2011 - 02:44 PM

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.co...328#entry736328
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#5 Lori2

 
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Posted 26 October 2011 - 05:44 AM

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?
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#6 lovegrov

 
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Posted 26 October 2011 - 05:45 AM

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
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#7 AzizaRivers

 
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Posted 26 October 2011 - 05:50 AM

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.
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Celiac diagnosed October-November 2010 (blood test negative, biopsy inconclusive after gluten-free for 6 weeks, miraculous diet results).

October 2010: Gluten free.
November 2010: No HFCS or artificial sweeteners.
March 2011: Gradually fading out soy.

#8 Skylark

 
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Posted 26 October 2011 - 07:50 AM

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.
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#9 lucia

 
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Posted 26 October 2011 - 12:15 PM

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.
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#10 Skylark

 
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Posted 26 October 2011 - 05:54 PM

Lucia, I'm really glad to hear you're doing so much better. B)
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#11 livelifelarge24

 
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Posted 26 October 2011 - 06:38 PM

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.
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"A man too busy to take care of his health is like a mechanic too busy to take care of his tools." - Spanish Proverb

#12 Skylark

 
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Posted 26 October 2011 - 11:32 PM

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.
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#13 color_me_confused

 
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Posted 28 October 2011 - 09:49 AM

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:
http://www.celiac.co...ents/Page1.html
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#14 Skylark

 
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Posted 28 October 2011 - 10:01 AM

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:
http://www.celiac.co...ents/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.
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#15 alicewa

 
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Posted 29 October 2011 - 05:34 AM

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?
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