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


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91 replies to this topic

#76 heidi g.

 
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Posted 04 November 2011 - 07:48 AM

ohh ok. Thank you skylark that was what answer i was looking for. And thanks for everyone else too. Im starting the diet that i made. It treats the leaky gut and is of course, gluten free. Hopefully it works!
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#77 IrishHeart

 
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Posted 04 November 2011 - 08:06 AM

ohh ok. Thank you skylark that was what answer i was looking for. And thanks for everyone else too. Im starting the diet that i made. It treats the leaky gut and is of course, gluten free. Hopefully it works!



Heidi,
Here is a great explanation of the difference between a wheat allergy, gluten intolerance and Celiac Disease.

http://americancelia...celiac-disease/

Please read it--- as it is very obvious that you are confused about it (as many folks are!) There is technically no such thing as a "gluten allergy", but that is what people call it. It is the AUTOIMMUNE component of celiac that makes it a whole different bird than intolerance/ sensitivity.

I was going to suggest getting copies of your reports but Karen has covered that. We all learned the hard way that we need to keep copies for ourselves.


This is what I have been trying to stress to you because yes, healing a leaky gut is a good thing, but if you are dealing with Celiac, you have other things to consider. Okay? Okay! :)
Best wishes to you.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#78 IrishHeart

 
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Posted 04 November 2011 - 08:11 AM

question though- I have found some evidence to the claim that antibiotics can cause damaged villi. Here is one of the sites: http://www.phmiracle...probiotics.aspx I just have a strong feeling that i don't have celiac disease. I just don't get why- Maybe im just too hopeful



This is not clear at all....after the biopsy, what did the doctor SAY? Is it Celiac or not? Being optimistic is a wonderful trait (hey, I am an optimist!)-- but you also must be realistic. If you actually do have Celiac, that needs to be addressed with follow-up care from a knowledgeable doctor.
Okay, good luck!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#79 Skylark

 
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Posted 04 November 2011 - 10:20 AM

question though- I have found some evidence to the claim that antibiotics can cause damaged villi. Here is one of the sites: http://www.phmiracle...probiotics.aspx I just have a strong feeling that i don't have celiac disease. I just don't get why- Maybe im just too hopeful

Waitamimute. You don't trust Wikipedia as a reference and you're believing that? Luv, they're trying to sell you snake oil and spouting pseudo-science to make it look believable. There is so much dangerous misinformation on that web page I can't even begin to list it. Haven't you had any gastrointestinal physiology in medical school?
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#80 Lisa

 
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Posted 04 November 2011 - 10:38 AM

A complication of anorexia and/or alcohol abuse, through lack of absorption can atrophy the villi as well.
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Lisa

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#81 domesticactivist

 
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Posted 04 November 2011 - 11:57 AM

Here are a couple more points of clarity:

The question was asked about candida and antibiotics. While these things can damage the gut lining, they do not create the same kind of damage to the villi that celiac autoimmunity does.

Also, someone said there is no such thing as a gluten allergy. Actually, there is. However, that is a different thing from celiac disease. In a gluten allergy, there will be IgE reaction to gluten, and the immune system attacks the gluten itself. In celiac disease, there is an autoimmune reaction where the body gets triggered into attacking the villi in the small intestine, and/or produces dermatitis herpitiformis on the skin. This is different than what we normally think of as an allergy.
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Our family is transitioning off the GAPS Intro Diet and into the Full GAPS Diet.
Gluten-Free since November 2010
GAPS Diet since January/February 2011
me - not tested for celiac - currently doing a gluten challenge since 11/26/2011
partner - not tested for celiac
ds - age 11, hospitalized 9/2010, celiac dx by gluten reaction & genetics. No biopsy or blood as we were already gluten-free by the time it was an option.
dd - age 12.5, not celiac, has Tourette's syndome
both kids have now-resolved attention issues.

#82 Skylark

 
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Posted 04 November 2011 - 12:23 PM

Actually, "gluten allergy" would be a misnomer. It's "wheat allergy" and the allergic reaction is to different protein fragments in the wheat kernel than the immune system tends to choose for celiac. Also, people with a wheat allergy can sometimes eat rye and barley.

Another thing that can cause temporary celiac-like villous blunting is severe illness from rotavirus infection. It's accompanied by severe illness, fever and long-lasting watery diarrhea so you'd know if you had it. The villous atrophy is temporary. Biopsies should not be performed when you're feeling ill.
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#83 IrishHeart

 
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Posted 04 November 2011 - 01:28 PM

Also, someone said there is no such thing as a gluten allergy. Actually, there is. However, that is a different thing from celiac disease. In a gluten allergy, there will be IgE reaction to gluten, and the immune system attacks the gluten itself. In celiac disease, there is an autoimmune reaction where the body gets triggered into attacking the villi in the small intestine, and/or produces dermatitis herpitiformis on the skin. This is different than what we normally think of as an allergy.


Not to be picky, but saying "gluten allergy" is technically incorrect.

Most people use this phrase to explain their condition, rather than say "I have celiac which is a potentially fatal autoimmune disease that..."....because by then, the person has a glazed look in the eyes that says " blah blah blah sooo not listening anymore...":lol:

When someone asks, so you have a gluten allergy? I say, it's not an allergy--like an "ah-choo" kind of thing :) Gluten eats my intestines and affects my brain and causes a whole bunch of problems. It's like kryptonite to me. And Supergirl can't fly if kryptonite gets in." That usually gets someone's attention and prompts more questions and then, I explain--if they really want to know more.

From Essentials of Gluten Sensitivity (and found in Danna Korn's Living Gluten Free )

"Gluten sensitivity is a physical sensitivity to gluten. The condition is not easy to define, because these sensitivities come in a variety of forms. Think of gluten sensitivities as falling somewhere on a spectrum, ranging from allergy to disease.

Allergy: Actually, there’s no such a thing as an allergy to gluten, but you can have allergies to the things that contain gluten: wheat, rye, and barley. In fact, wheat is one of the most common allergens.

Gluten sensitivity is a physical sensitivity to gluten. The condition is not easy to define, because these sensitivities come in a variety of forms. Think of gluten sensitivities as falling somewhere on a spectrum, ranging from allergy to disease.

Gluten sensitivity and intolerance: Often used interchangeably, the terms sensitivity and intolerance basically mean that your body doesn’t react well to a particular food and you should avoid it. People who fall in this range have a response to gluten very similar to a celiac response and may indeed have celiac disease — maybe. Here’s where things get fuzzy:

Some people diagnosed with gluten sensitivity actually have celiac disease, but their testing was done improperly or was insufficient to yield conclusive results.

Some people may not have celiac disease — yet — but if they continue to eat gluten, may develop it.

Some people may not have celiac disease and may never get it. But they do have sensitivity to gluten, and their health improves on a gluten-free diet.

If you test negative for celiac disease, yet your symptoms go away on a gluten-free diet, you probably have some form of gluten sensitivity. (Or, you may have celiac disease, with a false negative test result.)

Celiac disease: Celiac disease is a common (yet often misdiagnosed) genetic intolerance to gluten. Triggered by eating gluten, and the immune system responds by attacking the gluten molecule, in so doing, it also attacks your body cells. This autoimmune response results in damage to the small intestine, which can cause poor absorption of nutrients."

Hope this helps you, Heidi. :)
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#84 heidi g.

 
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Posted 04 November 2011 - 01:45 PM

Oh yes all this has helped me! I need to get a copy of my reports and tests because he did not tell me what i had. He did not clarify anything about an allergy to gluten or if I had Celiac Disease. After the endoscopy and Colonoscopy he said everything appeared normal. Then a few days later his nurse called to tell me to try a Gluten free diet. I said "as like for Celiac disease" and she said possibly. They did not tell me anything else. I am calling first thing Monday to make an appointment and get my test results and to talk to him because i am so confused!
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#85 kareng

 
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Posted 04 November 2011 - 01:51 PM

Oh yes all this has helped me! I need to get a copy of my reports and tests because he did not tell me what i had. He did not clarify anything about an allergy to gluten or if I had Celiac Disease. After the endoscopy and Colonoscopy he said everything appeared normal. Then a few days later his nurse called to tell me to try a Gluten free diet. I said "as like for Celiac disease" and she said possibly. They did not tell me anything else. I am calling first thing Monday to make an appointment and get my test results and to talk to him because i am so confused!



Don't just let them tell you what the path or blood says. Get actual copies. If you have an appointment, they will likely give them to you then if you ask (and remind them at the end of the appointment)

Write down your questions & take with you. Don't expect that the doc knows alot about Celiac or intolerance so you can't debate the "will I heal?"
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#86 heidi g.

 
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Posted 04 November 2011 - 01:58 PM

Oh and I forgot to mention this! I was considered Anorexic due to a fear of eating after i deveolped Gastritis after my antibiotic. I went from 180 pounds (I had a child) to 123 pounds in a year. Then when i started eating again i gained some and had digestion issues still. Not as bad as before though. Now im at 145 and i gain weight, then lose weight. Sometimes i dont eat and sometimes i do. I mean who wants to eat when they feel like they have the stomach flu. It's affecting my classes and my anxiety is through the roof! Im going to take a year off to get a handle on what is wrong with me
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#87 Lisa

 
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Posted 04 November 2011 - 02:10 PM

Oh and I forgot to mention this! I was considered Anorexic due to a fear of eating after i deveolped Gastritis after my antibiotic. I went from 180 pounds (I had a child) to 123 pounds in a year. Then when i started eating again i gained some and had digestion issues still. Not as bad as before though. Now im at 145 and i gain weight, then lose weight. Sometimes i dont eat and sometimes i do. I mean who wants to eat when they feel like they have the stomach flu. It's affecting my classes and my anxiety is through the roof! Im going to take a year off to get a handle on what is wrong with me


Heidi, pregnancy is a very common trigger for Celiac. Coupling that will eating difficulties would certainly support symptoms of Celiac or at the least intestinal distress.

Whatever the outcome of your testing, I would recommend that you respect that body and eat healthy every day. You have quite a few fans here who will be glad to walk you through a healthy and nutritious diet. If you don't you might get sicker and sicker. And partying, if you do (I remember 21)) on an empty stomach, could very well give you those flu symptoms or worse.


Tomorrow is a new day! :)
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Lisa

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#88 Lori2

 
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Posted 05 November 2011 - 05:46 PM

Irish Heart, you gave a reference to the American Celiac Disease Alliance where they state the following:

What is gluten intolerance?

People can also experience intolerance to gluten. Food intolerances are not thought to be immune mediated. GI symptoms with wheat or gluten intolerance may include gassiness, abdominal pain, abdominal distension, and diarrhea. These symptoms are usually transient, and are thought NOT cause permanent damage.

Why is it important to know if you have celiac disease, versus wheat allergy or gluten intolerance?

Celiac disease, wheat allergy and gluten-intolerance are treated similarly, in that patients with these conditions must remove wheat from their diet. It is important to note, however, that there is a difference between these three medical problems. Celiac disease is an autoimmune condition, where the bodys immune system starts attacking normal tissue, such as intestinal tissue, in response to eating gluten. Because of this, people with celiac disease are at risk for malabsorption of food, which cause nutritional deficiencies and may result in conditions such as iron deficiency anemia, osteopenia, and osteoporosis. Persons with a wheat allergy or gluten-intolerance usually do not have severe intestinal damage, and therefore are not at risk for these nutritional deficiencies. They also are not at increased risk of developing other autoimmune conditions.

In their opinion, gluten intolerance symptoms are transient and do not cause permanent damage. I am gluten intolerant, not celiacI do not have either one of the celiac genes. However, I would consider my long-term peripheral neuropathy and vitiligo to probably be permanent. They also state that persons with a wheat allergy or gluten-intolerance usually do not have severe intestinal damage, and therefore are not at risk for these nutritional deficiencies caused by malabsorption. I would suggest that my severe osteoporosis contradicts this.

Just wondering what the rest of you think. Can I expect my neuropathy, vitiligo and osteoporosis resolve now that I am gluten free?
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#89 Takala

 
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Posted 05 November 2011 - 06:36 PM

Homeopathy is not going to help patients with celiac avoid an autoimmune reaction if they eat wheat. other than the placebo effect.



Mass denial of the possibility of recovery from celiac, however slim, on this board is unfortunate.


This is one of the few places in the web-o-sphere where it is acceptable to be on a gluten free diet, and be stringent about it.

Mass "Denial" - Likely because there's so many people that are looking for any sort of excuse whatsoever to cheat or regress on their gluten free diets, because sticking to the diet can be extra work, and gluten is addictive for them, and they don't really need that sort of "encouragement" to try to see if they can cheat.... we've all heard the stories or experiences of people with 1st degree relatives and/or close friends who have symptoms and drive them nuts because they won't get tested, or even worse, they did get tested, and they don't take it seriously and cheat on the diet anyway. AND they COMPLAIN they're FEELING SICK all the time, too! :ph34r: AND there are so many people trying to huckster these blasted useless over the counter quack "cures" or "ameliorations" that cost a lot of money $$$ and will supposedly let people "cheat" socially out at restaurants, etc. Where does one draw the line ?

We can't even get accurately diagnosed or taken seriously by many people, at large and in the medical profession. And now you wish for acceptance of remissions... not going to be likely to happen. Maybe for a very few people with chronic infections that were cured. Or for the less sensitive gluten intolerants, as opposed to Officially Diagnosed Celiacs. But most.... they eat it, they're gonna get sick. They may or may not acknowledge just how sick they are.

It's been around 8 years for me, and I am becoming more careful as my sensitively slowly increases. I would guess from my ability to eat most things other than gluten (and I feel very sorry for so many here who have these huge lists of "also can't tolerate" - what a pia!) and my lack of having to be on a lot of medications and my basic gut function that I'm not doing too badly, but I doubt very much I can ever cross back over to the other side. And I had a chronic infection maybe 9 - 10 years ago I was treated for with a round of stronger antibiotics, and it finally ended. It Is Gone. I Will Not Tempt Fate On That. There really isn't any reason I would be having a gluten reaction at this point, other than there really is a permanent malfunction going on here.

edited to add stuff kept forgetting to put in :rolleyes: some sort of record for screwing up slashes in brackets :blink:


Just wondering what the rest of you think. Can I expect my neuropathy, vitiligo and osteoporosis resolve now that I am gluten free?


If someone who was as bad as I was with neuropathy can recover mostly (altho it took years) then I would not let other naysayers tell you that it's impossible. I don't have any experience with vitiligo so cannot comment. I think my bones have at least slowed down their rate of thinning (I remember actually being horrified at a scan I saw over 20 years ago, because as a layperson even I could tell that somebody's c spine wasn't supposed to look like that, and I can compare it to one take about 10 years later), but I supplemented religiously with multivitamin and calcium/mag all these years no matter what study said they didn't do any thing, and I get weight bearing exercise.

I don't have an official diagnosis of celiac, either. Whatever it was, was, imo, causing malabsorption problems because I kept having so many kidney problems, which stopped, and my hair grew and fingernails improved so much after going gluten free.
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#90 mushroom

 
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Posted 05 November 2011 - 07:22 PM

Heidi, I have only just read this topic through today, and I am sorry for what you are going through. Getting a proper diagnosis is so difficult which is why so many of us are undiagnosed or self-diagnosed. But nevertheless, we have come to accept that we must eat gluten free and that it would not be in our interests to cheat on the diet or think of ourselves as 'recovered.'

It has been said that accepting a diagnosis of celiac is like going through the five stages of grief:: Denial, Anger, Bargaining, Depression and Acceptance.

think I am seeing those stages as I have read through your posts. It is not easy to accept, especially socially at your age, that you will be denied all lthose glutenous foods we all loved, so we can deny it, get angry (with ourselves and others) about it, try to cut a deal, get depressed, but in the end we have to come to the point of accepting it and get on with it It sounds to me like you are going through all these stages at once :o But you are doing well and heading down what I think is a good path now. Get all the facts, get the copies, talk to your doctor, get more testing if necessary, but it sounds to me like you need to be rid of gluten to lead a healthy life. It is really not as daunting as it at first seems, especially nowadays when there is so much more awareness of what it means to eat gluten free (despite alll the misinformation that abounds).

Good luck to you with your doctor, with your schooling, with your career (whatever you end up doing, (but I agree with a pp who says it should be something YOU want to do, not something your dad wants you to do) and with your health. :)

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Caffeine free 1973
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Diagnosed psoriatic arthritis 2004
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