ENF

Sounds like you're on the right track. By strictly following the diet, there is a very good chance that your digestive, depression and anxiety issues are going to be greatly relieved in the near future - you will probably be grateful that you were diagnosed when you start to feel better. Gluten to a celiac is similar to a dangerous drug - it's got a very strong addictive aspect, this is known, and does all kinds of physical and neurological damage as well. Your life will be so much better, that you will probably not give a second thought to the inconveniences that are part of the solution. This was the case for myself, and many others who have been there.

It seems like a doctor trained in Europe would do better since over there this condition is widely recognized since 1950 -- unlike here in the US for the most part.

Bea

A large amount of credit for Celiac awareness in the U.S. goes to Dr. Alessio Fasano, who is from Italy and Dr. Peter H.R. Green, from Australia. There are other examples, I am sure, but these two doctors have been, and continue to be, a tremendous help.

Wow, it seems that MANY of us have been let down by western medical doctors.

I went to sevaral non-western doctors that were from, and educated in, Russia and China. They weren't any help, either.

I have also seen an overwhelming amount of literature that states that Celiac disease is defined by villus atrophy. Take for example this site:

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I have also seen what you are referring to described as non-celiac gluten intolerance. For example in the book "Healthier Without Wheat" the author describes gluten intolerance as a much broader problem with celiac disease being a small subset of that problem.

I personally have no problem calling the whole thing celiac disease, or gluten intolerance. Like I said in my first post. If eating gluten makes you feel bad, and you feel better not eating it, then stop eating it. Having to put an exact label or diagnosis on it before doing anything is just letting the damage continue.

There is also a danger of people being told they don't have celiac disease and then them continuing to eat gluten and making themselves sick.

I do not think that a doctor should tell someone that does not have Celiac Disease that they have it, but if tests are inconclusive then they probably should try the gluten free diet - as well as in cases of possible gluten sensitivity and intolerance.

I neglected to mention that there CAN be villi damage from medical conditions (such as HIV) other than Celiac, which in some cases must be ruled out by the physican.

Celiac disease is genetic according to experts Dr. Fasano and Dr. Peter Green. They do recognize Gluten Intolerance and Gluten Sensitivity, but do not lump them all together as Celiac, because the terminology is inaccurate from a medical standpoint.

The autoimmune response that a Celiac gets from consuming gluten is not the same thing as what a person with Gluten Sensitivity or Intolerance has - although I am certain that some people, without celiac, have other conditions, resulting frrom gluten, that are very serious - in some cases as bad or even worse than the symptoms that the average person with Celiac has experienced.

While I personally would agree with you about being gluten intolerant, I have read many times (and had my doctor tell me) that the "definitive diagnosis" is through biopsy.

Many of the problems associated seem to go way beyond the villi however and extend to most systems in the body. Gluten intolerance seems like the actual parent problem. Villus atrophy being one symptom there of. This way of looking at it is also in the book "Healthier Without Wheat"

However if you feel terrible when you eat gluten, and feel great when you don't it wouldn't make sense to start eating gluten again, even if Celiac Disease was ruled out. Especially since even with a biopsy you can get false negatives.

The reason I even knew to try a gluten free diet was that my sister has been extremely ill, in and out of the hospitals for about two years with potassium crashes. Why would I risk that over "trying gluten free"? We shared so many of the same symptoms hers was just at a more critical level.

I don't care if I am ever graced with a "celiac diagnosis" I know I always used to feel like I had been run over by a bus, and now I don't. Why would I want to go back?

Edit: My sister still hasn't been "diagnosed" either. She is still in danger of having to go back to the hospital. Her biopsy isn't scheduled till August. Which may or may not tell her anything. Her blood tests were "inconclusive".

Let's narrow down the criteria for a Celiac diagnosis once more, just for clarification. Villi damage from gluten can only occur if you have Celiac Disease. You must have the genetics for this, but having the genes does not necessarily mean that you have active Celiac. You can have Celiac without detectable villi damage, or positive antibody blood results. If your blood tests positive for Celiac, there is almost 100% chance that you have it. An Endoscopy can reveal the extent of the damage, but it sometimes does not show any at all even when Celiac is present. If the endoscope test is positive, regardless of blood test results, you have Celiac. An individual can have many problems from ingesting gluten, whether he/she has Celiac or not.

I am the type of person who really wanted a diagnosis. I did all the testing and everything came back negative for me. (Blood and biopsy.) I was so sure I had celiac when I read about it. My symptoms totally matched. For me, trying the gluten-free diet was really the only thing I could do to potentially feel better. I think it is great if you can get a diagnosis, but unfortunately the diagnositc criteria for celiac leave many of us behind. I don't think there is anything wrong with trying a gluten-free diet to see if it helps. You get to the point of desperation and none of the doctors believe you. So for me, at this point, a diagnosis doesn't really matter. I know my body better than the doctors do. And I am not going to just waste away and die just because my Dr. says I don't have villous atrophy. It would be handy if all the doctors could correctly diagnose us and hand us the "celiac certificate" but unfortunately it doesn't work out that way.

The only way to rule out Celiac Disease in cases like yours would be through a gene test. Even if the gene tests, blood tests and endoscope are all negative, it still does not eliminate the possibility of gluten sensitivity - which can cause serious medical problems, but not villi damage.

Villus Atrophy is the only positive diagnosis. The blood tests etc. only point to a possibility.

This is not true, TotalKnowledge. Although there is a substantial risk of false negatives with blood tests, positive blood results for Celiac are close to 100% accurate.

If you use Imodium use, stick with the chewables or tablets - the liquid version isn't certified gluten free.

I just saw the news about this on other New York celiac blogs and sites.

I'm looking forward to going there, and will soon be in the area of the Citicorp building.

If the claims about the bagels being indistinguishable from the real thing are true, I'll eat my gluten-free hat. Even most of today's "real" non-gluten-free bagels aren't close to tasting like the high-gluten water-boiled type that were manufactured in dedicated shops where I grew up, but I'm willing to give it a chance and hope that they are at least tasty and if they're a little reminiscent of the originals then all the better.

'The View's' Elisabeth Hasselbeck Sued Over Copyright Infringement

Tuesday, June 23, 2009

Elisabeth Hasselbeck is being sued by a Massachusetts woman who is claiming that the

If the villi are damaged from eating gluten, then it's not just "gluten intolerance" - it's Celiac Disease.

Eating and drinking rituals are so ingrained into our collective mentality that gluten and booze are considered by the majority to be an integral part of faith, love and happiness.

It doesn't surprise me that he's hard to see. Peter Green is the most famous doctor specializing in the most common autoimmune disorder. He likely gets called away frequently for very difficult Celiac-related cases, in addition to his hectic schedule of lectures, teaching, appearances, etc. I didn't even try to see him because does not take my insurance - but I did see another Columbia Celiac Center doctor, Susie Lee, as well as the Center's resident celiac dietician. I also got a bone density test, Celiac serology blood tests with extensive info (IGG, IGA, TTG IGA, Iron Panel, Vit. B12, Hepatic Panel, TBC Panel, Metabolic, etc.), and an endoscope/biopsy exam done there. It was very worthwhile and I'm glad I went.

The doctor should not have told you that you have Celiac Disease, because the diagnosis can't be made by a stool sample. The test can only show that you had a reaction to gluten, and it is possible that you have Celiac.

You could get blood tests, and endoscopy, for yourself and your children if you want a diagnosis. For many, a positive response from the gluten-free diet is enough proof.

Here's some dining info from a non-celiac friend, who is a writer and food expert. A number of good NYC restaurants do not have menus marked "gluten-free", but much of their food is naturally prepared without it. I haven't yet gone to any of them but plan on doing so in the near future. There's a lot of useful ideas in this article, which could lead to more sources of gluten-free dishes - not only in New York, but in many other communities as well.

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The types of foods and restaurants covered are (I may have missed some): Vietnamese, Korean, French, Thai, Mexican, North Indian, Shanghai, Sri Lankan, Malaysian, Latin American, Itzocan (Franco-Mexican), Salvadorian, Northern Italian and Venezuelan.

The cover story of the current issue (June 2009) of Harvard Health Letter features an excelllent three page article about celiac and gluten sensitivity, titled "Getting Out the Gluten"

Gluten free restaurants, and events, in and around NYC are discussed on The New York City Celiac Disease Meetup Group Message Board. There's been a lot new gluten-free options lately, and this is a good resource for residents, or visitors, to keep track of them with.

I have not yet read Elisabeth Hasselbeck's book, but what you have mentioned is consistent with expert advice on preventing cross-contamination - it only takes a microscopic amount of gluten to damage the villi, even if the Celiac patient doesn't notice symptoms.

The book has received some negative responses by Celiac experts, and patients, but the cross-contamination info in your post is on target.

The jury duty notice states that there are no exemptions, everybody that is eligible to serve must do so, and that the court will make accommodations for people with disabilities and hearing trouble.

I think that the last thing they want is interruptions due to problems with jurors, which could result in a mistrial.

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Oh, geez, that is what I mean about having fear of Grand Juries. That is also done during the deliberation process in long or complicated trials, when there is a problem with gaining consensus of all the jurors in gaining a verdict- the judge just sends you back into the room. You can't just grab us off the street and expect us to eat normal restaurant food brought to us, gaaaaaaaah.

They would have to provide a kitchen, or at least a microwave, and let us bring our own food and cookware. That would go over real well, I'm sure.

The convicted prisoners' religious and health dietary needs are taken care of - they get their custom, special meals cooked to order. When they get out, they are exempt from jury duty because they were convicted of a felony. Since I'm out of work right now anyway, crime is beginning to sound like a worthwhile career for a person with celiac to take up - it pays well, and if I get caught it would make my life a lot easier to not have to plan and cook meals, shop, pay rent, cable TV bills, etc.

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I use Wakunaga Kyo-Dophilus Probiotic Supplements. They are gluten-free, and milk free. I originally tried a small bottle purchased at Vitamin Shoppe, and now I order a years' supply at a time from Lame Advertisement - which does ship to Canada according to their website. I've had very good results using them. For the first month I took two every day, now I take just one. They are mild and don't cause any stomach problems. Another big plus is that they do not require refrigeration, so you can travel with them. I've had other effective non-dariy probiotics that were more expensive, such as NATREN Superdophilus (which must be refrigerated), but the Kyo-Dophilus works just as well for me. If I had to limit my supplements to just a few items, this product would be on my short list.

I never really had too many credit card problems but I've been through lay-offs, firings, evictions, sued by a landlord for past rent, lived at times with no medical insurance, no gas, etc. My dental bills alone could have put several of the dentists' children through medical school.

Just hang in there, you'll be OK - at least they don't have debtors' prison, for the time being.

Yet another lecture about toughing it out. Geez.

The consequences of Celiac, and other problems, might be easy to "control" if you live in Gooberville, but it can be very different in a city like New York.

I haven't tried Honey Nut Chex because it's mostly corn, which is hard for many people to digest. I do occasionally enjoy the gluten-free rice-based Chex product.

You know, I had a job, about 1.5 (or less?) years into being gluten-free, and now that I think of it, my stomach was a mess frequently. I think it was the stress from those wicked people. I literally walked out one day - couldn't take it and didn't care.

And wow, sounds like you really do have some other complications.

also, I think the age at which we are diagnosed with Celiac - the older we are (I was 44, but my lifelong symptoms were mainly neurological), the harder it is to recover.

OK, now were getting into more of what I'd like to talk about.

The Celiac people of the world are survivors, unfortunately we often have to relearn and reinvent ways to do this because many of the old standards no longer apply. If you are dealing with a person that is extremely nasty, or "wicked", at work, you can't always just put them in their place as someone in the past would have. We are compelled by our conditioning, and rules, to suppress this instinct. Some medical scientists now believe that the human digestive system has it's own intelligence. Since we celiacs are extra-sensitive, and often scarred, in this area, the "brain" of our gut, it becomes understandably upset in stressful situations when we cannot always react in a fashion that is appropriate and natural, such as raising of the voice, employing other body language (I sometimes did both, lol), even running away, etc. Simply "letting it out" does not usually prevent the stomach problems, either. However, in a real emergency, at least in my experience, the usual stomach/intestinal disastrous reactions go on hold and one can function well as long as needed. In non-critical stressful situations like the ones we're talking about, such as bad jobs, jury duty, etc., avoidance is often the best option for people with digestive, and often other, disorders that interfere with well-being.

Since PTSD is possible with the brain in our heads, who can say for sure that it's not possible with the "brain" in our guts, as well? I think that it is, and for many Celiacs it's a reminder of what they've been through, and can serve as a warning to be cautious with their health, both mental and physical, in the future.

Hope this makes some sense!