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

[heidi g.]

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!

[IrishHeart]

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.

Open Original Shared Link

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.

[IrishHeart]

question though- I have found some evidence to the claim that antibiotics can cause damaged villi. Here is one of the sites: Open Original Shared Link 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!

[Skylark]

question though- I have found some evidence to the claim that antibiotics can cause damaged villi. Here is one of the sites: Open Original Shared Link 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?

[Lisa]

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

[domesticactivist]

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.

[Skylark]

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.

[IrishHeart]

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..."

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.

[heidi g.]

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!

[kareng]

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?"

[heidi g.]

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

[Lisa]

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!

[Lori2]

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

[Takala]

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! 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 some sort of record for screwing up slashes in brackets

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.

[mushroom]

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 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.

[domesticactivist]

I was going to respond with passages but my computer is on the fritz so I'm on my phone. Suffice to say, my reading of the book Healthier Without Wheat this week has evolved my perspective on the whole intolerance-allergy-celiac thing. I'd be interested to know your thoughts on the book.

[IrishHeart]

In their opinion, gluten intolerance symptoms are transient and do not cause permanent damage. I am gluten intolerant, not celiac—I 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?

I agree with what TAKALA has posted above and will add my two cents.

I am both a realist and a raging optimist (yes, that is possible!) who thinks that many of the symptoms I have as a result of gluten will either reverse, subside or at least, be more tolerable. I have dozens, some debilitating, yet I have had many diminish and I keep in mind that it may take YEARS for my body to "right itself" as I went undiagnosed for so long. That is not easy to do when every day is a struggle, but I keep my eyes on the prize.

There are many on this board who have had nearly all of their symptoms disappear and this is what I hang my hope on. So many gracious people who have told me their stories and who encourage others to stay focused and patient. My doctor also urges me to be patient. He says some neuropathy may not resolve, but then again, many report that it does. Mine has LESSENED after 10 months, and I was in burning hell, so I remain optimistic.

I find the wording in many sources of information about the "gluten sensitivity spectrum" to be somewhat "fuzzy" (some would use the word contradictory ) when it comes to symptom resolution.

Whom do we believe? Not sure myself.

The truth is, there is so much they still do not know about this "thing".

IMHO, gluten --whether you have a sensitivty, an intolerance or celiac--can wreak havoc. I think the inflammatory response from gluten intolerance is the underlying cause for many of the autoimmune diseases and "-itises" we all develop from it. (gastritis, thyroiditis, arthritis, vagninitis, chostochondritis, pancreatitis, sinusitus, blepharitis, etc...)

As far as the "celiac genes" go, the jury is still out on those.

Many people have diagnosed celiac and they have neither the DQ2 or DQ8 gene. There are several on this board, in fact-- and my doctor was stunned when one of his patients had celiac with neither of those genes. So, even THAT is not reliable as a tool for "excluding celiac".

The research that is ongoing tells us more and more. Dr. Fasano and colleagues published a report last Spring proving that gluten sensitivity causes many symptoms once attributed solely to celiac and intestinal damage. I think he's the man who seems to be on the right track for figuring this puppy out !

Whether those symptoms are transient or permanent may vary from person to person.

Depending upon was CAUSED the symptoms will determine what reverses or resolves. If the neuropathy was caused by a B-12 deficiency for example, and the deficiency is addressed, the neuropathy should clear. Several factors contribute to osteoporosis (as you probably know) and so, those issues need to be addressed IN ADDITION to removing the offending gluten. Many claim that osteoporosis can be reversed or at least halted with proper diet, cal/mag supplementation and exercise or in severe cases, with medication. I had a rapid decline in bone density myself in just one year, so I am hopeful that will stop.

While gluten sensitivity is a contributing factor in many of these symptoms, there may be other reasons why they develop as well. Eliminating gluten is part of the solution to resolving health problems, but addressing the other factors is also necessary. I took out gluten, and yes, that stopped the autoimmune attack, but I had multiple vitamin/mineral deficiencies and B-12 and Folate anemias that needed to be supplemented.

Just FYI RE: vitiglio....I read this interview with Dr. Fasano that mentions vitiglio if you are interested. The interviewer has it herself and tells him that hers is resolving on a gluten-free diet.

Open Original Shared Link

And most importantly....

You will notice the wording from that article excerpt you posted above uses the word "USUALLY" ....as in "usually does not cause" intestinal damage ?? This must mean that SOMETIMES it does. This type of careful wording is used in publications because quite frankly, it seems no one really knows for sure what the hell is going on with gluten!! I know this, it is not the healthy grain humans once thought it was because it has been modified and tinkered with so many times.

That's a long answer to your question (sorry) but IMHO, I think that IN TIME, many symptoms CAN reverse. Many "success stories" on here are far more encouraging than any of the doomsday "literature" that circulates on the internet.

Personally, I choose to believe that in time, I can resume a healthy life once more. But in my case, I would never, ever put that poison in my body again, regardless of what "they" say about celiac being "cured". To fully understand the nightmare this has caused me, you would have to have walked (or should I say staggered) in my shoes and suffered the drastic consequences of celiac to understand why I doubt this concept.

Best wishes to you!