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pain*in*my*gut

Could This Be A Major Breakthrough?

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I hope this might offer some of you with either a negative biopsy (like me) or those who didn't have one, a little bit of hope ;) . Dr Fassano is the Medical Director of the Center for Celiac Research at the University of Maryland School of Medicine. He is considered one of the leaders in Celiac research. It looks like the medical community might be coming to their senses regarding Celiac dx and the need for a positive biopsy!! I like that he talks about being less rigid about the criteria and recognizing that it's not a black or white kind of thing.....

Question: What about eliminating the need for the biopsy to diagnose

celiac disease?

Dr. Fassano: Confining the diagnosis to a rigid set of rules, which, by the

way, I contributed to wrongly, does not reflect the real gluten world out

there. We know there are clinical cases of celiac disease in which not all

the criteria are there. We published a paper that said let

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There are many things to discuss from this article, but I came away really upset by his response to the last few questions.

He said that if you are "gluten sensitive" that you are not doing long-term damage by eating gluten, but rather, only suffering the immediate symptoms. To which I would ask him "how do you KNOW this"? In my case, and I've seen others on the board who share the same opinion, I believe my tests came back negative either because I was early-stage celiac or because the tests are still not 100% conclusive. I get upset when doctors act so sure that people like me don't have celiac and can just go back to trying gluten in the future.

Before gluten made me so sick that I KNEW something else was wrong, it made me intolerant to casein, thinned my hair, gave me facial tics, and destroyed my energy level, mood, sleep, memory, and ability to concentrate.

I'm a mess and in a lot of pain for several days (effects up to one month) if I get glutened, so there's no chance of me wanting to try it. But for argument's sake, if these immediate symptoms ever went away, before I would ever knowingly try gluten again I need something more than this man's opinion, based, exactly, on what large scale scientific studies? How can he be so sure?

*end rant

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There are many things to discuss from this article, but I came away really upset by his response to the last few questions.

He said that if you are "gluten sensitive" that you are not doing long-term damage by eating gluten, but rather, only suffering the immediate symptoms. To which I would ask him "how do you KNOW this"? In my case, and I've seen others on the board who share the same opinion, I believe my tests came back negative either because I was early-stage celiac or because the tests are still not 100% conclusive. I get upset when doctors act so sure that people like me don't have celiac and can just go back to trying gluten in the future.

Before gluten made me so sick that I KNEW something else was wrong, it made me intolerant to casein, thinned my hair, gave me facial tics, and destroyed my energy level, mood, sleep, memory, and ability to concentrate.

I'm a mess and in a lot of pain for several days (effects up to one month) if I get glutened, so there's no chance of me wanting to try it. But for argument's sake, if these immediate symptoms ever went away, before I would ever knowingly try gluten again I need something more than this man's opinion, based, exactly, on what large scale scientific studies? How can he be so sure?

*end rant

Yeah, I completely agree with you on those last 2 points! This one is just plain sad and wrong :o :

If you come to my office and say I feel

sick when exposed to gluten and I do my tests

and I figure out you don

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I believe that what Dr Fassano is saying in those two points just mentioned, is this:

If you are gluten intolerant, but do not actually have celiac disease, you will suffer adverse reactions to eating it, but you will not have the autoimmune destruction of parts of your body.

In other words, celiac disease is unique in that actual damage is done to body parts through the autoimmune reaction. Other intolerances, while they lead to uncomfortable reactions, are temporary and pass once the substance in question passes through the system.

For example, if you are lactose intolerant, but drink milk anyway, you will have gas, bloating, diarrhea, and similar symptoms, but there will be no lasting damage to your tissue.

It is dramatic progress to have a recognized celiac disease expert acknowledge that non-celiac gluten intolerance even exists. That it might be different in its impact is clearly open to discussion.

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Dr. Fasano has been saying these things at conferences for at least 2-1/2 years. I heard him speak at Stanford University in June 2009 (and a number of times previously), and it was the first time I'd heard him say that a biopsy wasn't essential. I totally agreed with him then, and I still do. The other presenters--all old men who were very set in their medical ways--disagreed vehemently with him and said so many times throughout the conference. Dr. Fasano possesses the conviction to stand up to the medical community, and I consider him a very courageous man who tolerates the demeaning attitude of his fellow doctors in the gastroenterology field.

That said, although I adore Dr. Fasano, I do disagree with him on several points. However, he is responsible for convincing the medical community in this country that celiac is a common auto-immune disease. Before he came along, doctors accepted the mainstream assumption that only babies and toddlers can have celiac and that the disease is relatively rare. We owe a great deal to Dr. Fasano, and I believe that he will come to believe differently about gluten sensitivity as more studies are done. The same can be said about Dermatitis Herpetiformis.

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Wow, like heck yeah !

It is dramatic progress to have a recognized celiac disease expert acknowledge that non-celiac gluten intolerance even exists. That it might be different in its impact is clearly open to discussion.

Don't get upset with what he is saying, chamomilelover and pain-img. He's a doctor- researcher, he approaches it from that angle, but you almost never hear a doc say "I was wrong" and he's saying that !!!! He may not call a patient a diagnosed celiac, but he is saying he would call them a gluten intolerant on a spectrum, and there is always going to be a lot of them, they "aren't going away." And he is saying that still we have 90% or more of celiacs undiagnosed. Some of this is going to be because of medical screwups caused by unawareness by both patient and doctors. This doesn't mean a person is not celiac. It also does not mean they are not gluten intolerant. It means they are undiagnosed. It means he is proposing a different way to diagnose conditions which require gluten free diets, because he thinks there are more people out there needing them, whatever the cause. Some of this awkwardness, is also he is switching the tense of language around from English to Italian when he is speaking in English and creating a narrative for the interview. He said that people who he could not diagnose as celiac, went on to alternative diet therapies and improved.

You don't understand some of the nuttier lobbyists out there would burn him at the stake for that one.

Imagine you are attempting to convince the FDA of something, and you will need to speak in FDA - speak depending on whether the people involved are scientists, researchers, govt worker bees, straight policy wonks, business people, former lobbyists, or politicians.... you need a narrative.

I cannot believe I'm reading some of this in my lifetime- I was told back in the early 1980's everything that was going wrong with me was "idiopathic" (without cause), then they kept trying to misdiagnose me with other autoimmune conditions, and now here is a researcher chiding the Federal Govt of this country into trying to get the FDA to put out a gluten free labeling standard for people like us who may not have the "official gold plated standard of diagnosis

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Thank you, Takala--wise words, for sure! Dr. Fasano will always have our backs....and he is a decent doctor who cares for everyone with gluten issues.

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I rang the Celiac clinic in Melbourne the other day and they were saying they are working to change the way diagnosis is made as well. You would have to have a very high reading on the bloods though.

I don't meet those 5 criteria due to screw ups with testing and Drs - none of it my fault and if it had been done properly I have no doubt I would have been found to be celiac!....back to the old drawing board!

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I know - it just drives me mad that I can't get a diag. I know its not the be all and end all. And its in my family and I have the gene and my symptoms are so severe it really couldn't be an intolerance...but its feels like unfinished business!! Ya know? :lol: Maybe I need to get a hobby!!

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I believe that what Dr Fassano is saying in those two points just mentioned, is this:

If you are gluten intolerant, but do not actually have celiac disease, you will suffer adverse reactions to eating it, but you will not have the autoimmune destruction of parts of your body.

In other words, celiac disease is unique in that actual damage is done to body parts through the autoimmune reaction. Other intolerances, while they lead to uncomfortable reactions, are temporary and pass once the substance in question passes through the system.

Peter, I am not a celiac. I am "just" gluten intolerant. However, I have had vitiligo and peripheral neuropathy for 25 years. I believe both of these are thought to be autoimmune reactions.

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Peter, I am not a celiac. I am "just" gluten intolerant. However, I have had vitiligo and peripheral neuropathy for 25 years. I believe both of these are thought to be autoimmune reactions.

So Lori, I guess Dr. Fassano has just "diagnosed" you and me as celiac, because we have other autoimmune reactions. I am undiagnosed with autoimmune psoriatic arthritis. If gluten were not hurting us we presumably would not have gone on to develop these conditions, just being "gluten intolerant". :P

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So Lori, I guess Dr. Fassano has just "diagnosed" you and me as celiac, because we have other autoimmune reactions. I am undiagnosed with autoimmune psoriatic arthritis. If gluten were not hurting us we presumably would not have gone on to develop these conditions, just being "gluten intolerant". :P

But according to EnteroLab testing I am gluten sensitive, but I do not have either one of the celiac genes. I have two gluten sensitivity genes (one the same as Raven). Until the "experts" get it figured out, I'm gluten free.

However, it does make a difference for my son. He was diagnosed celiac as an infant, lived two years on soy milk, rice, bananas and lamb and then "outgrew" it. He has no symptoms now but recently did EnteroLab testing showing that he is gluten and casein sensitive with the Dq8 gene. So is he celiac or not and with no symptoms, how careful does he need to be?

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But according to EnteroLab testing I am gluten sensitive, but I do not have either one of the celiac genes. I have two gluten sensitivity genes (one the same as Raven). Until the "experts" get it figured out, I'm gluten free.

However, it does make a difference for my son. He was diagnosed celiac as an infant, lived two years on soy milk, rice, bananas and lamb and then "outgrew" it. He has no symptoms now but recently did EnteroLab testing showing that he is gluten and casein sensitive with the Dq8 gene. So is he celiac or not and with no symptoms, how careful does he need to be?

I would think he is probably still celiac because it is not something you can outgrow. You can have a vacation from the symptoms, but you still have it, especially if you have the genetic predisposition. I would think he needs to be just as careful as anyone else because it can still wreak havoc in your body, symptoms or no, that manifests itself in later years.

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Mushroom and Lori - you both sound autoimmune to me (although I know you already know that mushroom!). Lori when you say that you are not celiac is that because of negative testing? We all know how unreliable those test can be so I'd be assuming of was celiac if I had neuropathy etc!!!

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I may end up getting the genetic tests done for my youngest son. This would prove useful since we didn't have the biopsy. So far he meets three of the five critera. The oldest one meets none.

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Peter, I am not a celiac. I am "just" gluten intolerant. However, I have had vitiligo and peripheral neuropathy for 25 years. I believe both of these are thought to be autoimmune reactions.

I was just trying to make Dr Fassano's statements easier to understand by paraphrasing them in plain language. I did not say that I agreed, or disagreed, with his conclusions.

I DID say that his acknowledgment that non-celiac gluten intolerance actually might exist is a giant step forward for medical science.

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Mushroom and Lori - you both sound autoimmune to me (although I know you already know that mushroom!). Lori when you say that you are not celiac is that because of negative testing? We all know how unreliable those test can be so I'd be assuming of was celiac if I had neuropathy etc!!!

I would agree. At this point in this country they don't seem to recognize that celiac can have severe nerve impact independant of the gut issues. In some other countries they do. People with DH are considered celiac even if they have no gut issues. Someday perhaps this country will recognize that brain impact is also celiac and it can show up at times long before gut symptoms are more than just something considered normal, for example episodes of C or D that many of us have intermittently before things become a constant.

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Mushroom and Lori - you both sound autoimmune to me (although I know you already know that mushroom!). Lori when you say that you are not celiac is that because of negative testing? We all know how unreliable those test can be so I'd be assuming of was celiac if I had neuropathy etc!!!

A year and a half ago my frequent loose stools turned into chronic diarrhea and I lost 15 lbs. in two months. Because of my son

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