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trents

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mle-ii Explorer

And guess what I ran across in a recent search of PubMed...

Open Original Shared Link

See my emphasis below in bold.

Microscopic colitis demonstrates a TH1 mucosal cytokine profile.Tagkalidis PP, Gibson P, Bhathal PS.

Royal Melbourne Hospital, Australia.

Background and aims: Microscopic colitis is an inflammatory disorder of unknown etiology. The aim was to characterize the mucosal cytokine profile of microscopic colitis with a view to understanding its potential pathogenic mechanisms. METHODS: Mucosal biopsies taken at flexible sigmoidoscopy from 18 patients (8 lymphocytic colitis and 10 collagenous colitis) were analyzed for cytokine profile using real time RT-PCR, in comparison to those from 13 aged-matched controls with diarrhoea-predominant irritable bowel syndrome. Biopsies from 6 patients with histologically documented remission were available for comparative analysis. Biopsies were also taken to determine the cellular expression of cytokine and cytokine-related proteins using immunohistochemistry. RESULTS: Mucosal mRNA levels were 100 times greater for interferon-gamma and interleukin-15, 60 times greater for tumor necrosis factor-alpha, and 35 times greater for inducible nitric oxide synthase in microscopic colitis compared to controls. Apart from a trend for elevated levels of interleukin 10, levels of other TH2 cytokines including interleukins 2 and 4 were too low to be accurately quantified. Mucosal interferon-gamma mRNA levels correlated with the degree of diarrhoea, and returned towards normal in remission. The immunohistochemical expression of cell junction proteins, E-cadherin and ZO-1, was reduced in active disease. No differences were noted between lymphocytic and collagenous colitis for any of the above parameters. CONCLUSIONS: MC demonstrates a TH1 mucosal cytokine profile with IFN-gamma as the predominantly up-regulated cytokine, with concurrent induction of nitric oxide synthase and down-regulation of interferon-fx-related cell junction proteins. This pattern is similar to that in coeliac disease and suggests it might represent a response to a luminal antigen.

Hmmmmm...

I have Microscopic Colitis (Lymphocytic to be more precise), this was determined during a colonoscopy. The standard blood tests I took found no celiac disease, yet there appears to be a link. Whether gluten is the cause in MC/LC who knows, in my case I'd bet quite a lot on that given that I have antibodies to gluten present in stool samples.

Make of it what you will. But someone explain to me how the colon showed inflamation, I show no anti bodies for gluten in my blood, yet I show antibodies in my stool. What is this? I'd call it a gluten allergy or intolerance.

Mike


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andrew1234 Newbie

Racheal, JerseyGirl,

I think your points generally make sense and gluten intolerance would definitely be a candidate for research. Especially because there are many people on this board who claim to have seen a dramatic improvement when they went gluten free, and I think you can't ignore the experiences of so many people, even if it doesn't agree 100% with the things I learned in medical school, so what I am trying to say is that if you feel better than who am I to argue with that....

Also I realize that medical science doesn't know a 100% about the human body, probably not even 50%, so if something has not been proven yet doesn't mean it's not true.

ravenwoodglass Mentor
Racheal, JerseyGirl,

I think your points generally make sense and gluten intolerance would definitely be a candidate for research. Especially because there are many people on this board who claim to have seen a dramatic improvement when they went gluten free, and I think you can't ignore the experiences of so many people, even if it doesn't agree 100% with the things I learned in medical school, so what I am trying to say is that if you feel better than who am I to argue with that....

Also I realize that medical science doesn't know a 100% about the human body, probably not even 50%, so if something has not been proven yet doesn't mean it's not true.

Andrew you might want to consider looking into some of the research that has been done in Europe. You might also want to go into the NIH web site and take a look at some of their more recent findings. They are getting ready to launch a campaign to bring more celiac awareness to the doctors that are here in the US. There is a link to that site in the Publications section of the board. Also check out other celiac web sites you will find many stories similar to the ones here.

trents Grand Master

I think Andrew might have a valid point about the "intolerance" terminology. I read a book recently on food allergies/intolerances/sensitivities. The author had a section on the terminology related to pathlogic food reactions and she assigned "gluten sensitivity" to celiac disease. I think "gluten sensitivity" is a better handle than "gluent intolerance" for the reasons Andrew suggested. Having said that, it is true that words will have whatever meaning society assigns to them, whether by formal and intentional definition or by common usage. They have no intrinsic meaning.

Steve

Canadian Karen Community Regular
Racheal, JerseyGirl,

I think your points generally make sense and gluten intolerance would definitely be a candidate for research. Especially because there are many people on this board who claim to have seen a dramatic improvement when they went gluten free, and I think you can't ignore the experiences of so many people, even if it doesn't agree 100% with the things I learned in medical school, so what I am trying to say is that if you feel better than who am I to argue with that....

Also I realize that medical science doesn't know a 100% about the human body, probably not even 50%, so if something has not been proven yet doesn't mean it's not true.

We're just the tip of the iceberg........ ;)

I firmly believe that there are millions of people walking around with either celiac disease, gluten intolerance or gluten sensitivity and haven't a clue as to why there have all these different ailments that are unexplained.....

I also firmly believe that the current knowledge of celiac disease, gluten intolerance and gluten sensitivity is also just the tip of the iceberg. This is such an untapped source of possible explanation for a myriad of ailments, and the research has only begun to uncover it. I truely believe that within the next 5 - 10 years, there will be not only an explosion of diagnoses of gluten difficulties, but an explosion of research and breakthroughs....... That's my dream, and I'm sticking to it!!! :D

Karen

mle-ii Explorer

I agree, but I'd bet we'll also add casein and soy to that list as well. We'll see.

GravStars Contributor
This article is completely bogus. I am afraid this guy just wants to sell the "alpha program" to as many unsuspecting people as he can. First of all he states that the prevelance of celiac disease is 1% of the population. In fact research says that it's not higher than 1/250.

"In 1998, Alessio Fasano and colleagues tested blood samples from a blood bank to develop a reference point for the prevalence of celiac disease in the United States. They found that of 2,000 samples, 1 in 250 exhibited celiac-specific antibodies. In a much larger, nationwide prevalence study also led by Fasano (in which we participated), it was determined that of 13,000 participants, the rate of celiac disease in the healthy population exceeded 1 in 200. According to these projections, about 0.7 percent of the US population has celiac disease."

from: Open Original Shared Link

0.7 is pretty close to 1%, an easy round-up. maybe not entirely accurate, but not too far off.


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rumbles Newbie

Intolerance vs. sensitivity:

Intolerance is the correct word. Intolerance refers to an inability. Sensitivity in medicine is often used to refer to the outcome and accuracy of test standards, as in a certain test has a high sensitivity rate. It often is also used for a symptom known as light sensitivity; normally a by product of certain ailments, it is a symptom often not of major focus in the medical community.

The people that call themselves gluten intolerant share some or many of the symptoms of those diagnosed with celiac disease or DH, with symptoms alleviated by the absence of gluten in the diet. Due to either negative test results, or having not undertaken testing for various personal reasons (including cost, insurability, etc.), they lack the diagnostic label celiac disease. These people and the gluten-related issues that they deal with should not be minimalized by trying to change their status from an inability to a sensitivity.

Many of us know how hard it is to get family and friends (and sometimes people in the medical community) to understand the significance of diagnosed celiac disease; imagine how hard it would be to convince others that you have a serious condition if it were called a sensitivity. Please save the word sensitivity for tests and toothpaste.

(A message to Andrew1234: thank you for understanding.)

trents Grand Master

Jersey girl,

You seem to be making a distinction between celiac disease and "gluten intolerance". I'm not sure I buy that. Perhaps you should explain what the difference is in your mind. I use these terms (though I prefer "gluten sensitivity" to "gluten intolerance") synonymously.

Although "sensitivity" may seem a little too milk toasty as a handle for our disease, I don't like "intolerance" because it suggests GI distress caused by an inability to break a food substance down. That is not the mechanism involved with celiac disease. I also note that the technical medical term most often used is "gluten sensitive entoropathy".

Steve

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    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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