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Q: What symptoms should a person or their physician be looking for that may be a sign of celiac disease or gluten sensitivity?
A: This question is the first challenge in the entire situation because the symptoms are vague and nonspecific. Thatís the reason why it is sometimes very difficult to make a diagnosis based on the clinical presentation.
Typical symptoms are gastrointestinal symptomsópain, bloating. Diarrhea is frequent ... IBS type symptoms can be there.
As concerns celiac disease, there is no organ that is spared, so you can have symptoms that involve bones, like osteoporosis or joint pain. Symptoms can be related to anemia, or you can have symptoms related to [behavior], like chronic fatigue. You can have mood swings, short[term]-memory loss, all the way to depression and schizophrenia.
You can have reproductive issues like infertility or miscarriages, and the list can go on and on.
Q: So what if a person thinks they do have some of these symptoms, what should they, with their doctor, do?
A: The first thing to do is to go through the list of possible alternatives reasons or causes that brought them to have those symptoms. And depending on what we are talking about, celiac disease is on the list: on the top, in the middle or the bottom.
Definitely a wise approach would be to take into consideration all the possible causes of that particular system including, of course, celiac disease.
Q: OK, so the wisest approach is to take everything under consideration, but you want to be sure celiac disease is on the list?
A: Absolutely ... Once all the proper tests have been done and all causes have been ruled out including celiac disease, gluten sensitivity can be considered.
Gluten sensitivity is [diagnosed] by exclusion criteria because we donít have the specific markers, like for celiac disease, to make the diagnosis. So only when every other cause has been ruled out, gluten sensitivity can be considered.
Q: So I understand that you had a role in the development of the blood test used to diagnose celiac disease?
A: Thatís right.
Q: Can you tell me a little bit about that?
A: Sure, the history of celiac disease that weíve experienced in the past 30 years is a history of milestones that came about over time. Among others, there were milestones in terms of the diagnostic tools that we have developed to make the diagnosis of celiac disease.
So with gluten sensitivity, we are now where we were with celiac disease 30 years ago. Thirty years ago, we had very unspecific tests for celiac disease. In the 80ís, we used to test [for] celiac disease with the antibodies that are now, in the original form, obsolete because they are not very good. And in the 90ís, there were another form of antibodies that were much better.
The major caveat of those antibodies is that the test was operator dependent, so that it was not a machine that scored the test. So, there was somebody who had to look through the microscope and make the call, and so the call was very subjective.
So in the late nineties, we were able to target or to clone the human form of of tTg (antibodies) and we were able to develop the human form that we are now able to use for diagnosis.
Q: So this is the test [the tTg test] that you would obviously recommend?
A: This is the test, not used by me but used by everybody.
Q: If you find if you are gluten sensitive with no evidence of celiac disease, is it necessary to be on a strict gluten free diet?
A: Thatís also a very good question. ... The threshold of sensitivity can change from one individual to another. If one has celiac disease, everybody needs to be totally gluten freeóeven a crumb can make these people sick. We donít know with gluten sensitivity if that is always the case.
Some people may have the same level of sensitivity, and they have to be absolutely gluten free. Other people may have a threshold that is lower and therefore a little bit more flexible in terms of compliance with diet. So the stringency of the diet needs to be adjusted from one person to another.
Q: What is the average amount it takes to trigger a reaction?
A: From what we understand, 55 mgs per day is the average amount where everyone will be triggered by the auto-immune disease.
Q: So how much would that be in terms of something people would be able to understand?
A: We are talking about maybe, you know, 10-15 crumbs of bread.
Q: Per Day?
Q: We donít know [exactly]?
A: No. Honestly, its between 10 to 15, but we donít know exactly. But definitely 15 is the average which everybody with disease will react [to].
Q: So what medical specialists should be the most aware of the latest medical information pertaining celiac disease or gluten insensitivity?
A: Most definitely the internists and general pediatricians. They are the ones who see the cases first ... The reason why Iím saying this because the variety is such that sub-specialists will rarely see all the cases. If you have anemia, you go to the hematologist. If you have infertility, you go the OB/GYN. Before you go to these folks, you will definitely go to your internist or your pediatrician.
Q: What is the best way to stay informed because things are changing so rapidly?
A: The best way to stay informed is to consult trustworthy sites on the Internet.
Q: So, This is have to do with my having the auto-immune disease, vitiligo [a condition that causes skin to lose its pigment and develop white patches] ...
I noticed after 2 months of being gluten free that the white patches start re-pigmenting. And now Iím more than 50 percent repigmented. My hands, you canít even tell that had it. So, Iím wondering if can be related to the diet and how?
A: First of all, we have solid evidence for some co-morbities, like celiac disease and type 1 diabetes. We have only anecdotal evidence for other co-morbities, like vitiligo ... Is the gluten the culprit that leads to celiac disease? Undisputedly. Is gluten possible involved in triggering other autoimmune disease like vitiligo? It cannot be excluded.
Nobody knows for sure because nobody is really looking into that. It is pretty obvious that any auto-immune disease, including vitiligo, is triggered by the exposure to an environment.
While 100 percent of people with celiac disease, its triggers is gluten, people with other autoimmune diseaseóitís possible that the subgroup is triggered by gluten. Therefore when they go on a gluten-free diet, they improve. But again, nobody has done any systematic study on this kind of matter.
Q: Does this mean that anyone with autoimmune diseases ... should try a gluten free diet?
A: I would not, because you know, in medicine, ĎGive it a tryí is not a way to do it. So I believe this needs to be more systematically studied before making that kind of recommendation.
Q: Do you have a favorite question that I havenít asked?
A: I can tell you the most asked question: Why are you doing this? Do you have celiac disease or gluten insensitivity yourself? ...
I do not have celiac disease nor gluten sensitivity, but ... I trained in a place where, you know, if you donít know about celiac disease, youíre not gonna graduate.
Then over time, I developed a tremendous interest in celiac disease and other forms of gluten reactions.