Question About "a Hidden Epidemic"

[anna34]

I'm reading Peter Green's book and I just came to the part about Latent Celiac Disease and he states that "there is a general acceptance among medical professionals studying celiac disease that latent celiac disease should not be treated with a gluten-free diet" and that "treatment should be reserved for those diagnosed with celiac disease". Why would it be bad to be on a gluten-free diet if you don't have celiac disease? There doesn't seem to be anything harmful about the diet. Does anybody know the reason for this statement?

I ask because I'm pretty much self-diagnosed. I just felt so much better after trying the diet for a couple of days and I haven't looked back. It has been two months and the couple of times that I've been accidentally "glutened" it has been terribly painful. So, even though my blood test was only borderline and I wasn't referred for a biopsy, I'm going to remain gluten-free. I do get a little upset though when I look back and realize that I should have insisted on being referred. There was no way of predicting though how good I was going to feel off gluten. It's not worth going back on gluten, but then I read this statement which seems to imply that there's something wrong with doing the diet if you aren't confirmed to have celiac and I find it confusing. Perhaps this part of the book is outdated?

[Gemini]

I'm reading Peter Green's book and I just came to the part about Latent Celiac Disease and he states that "there is a general acceptance among medical professionals studying celiac disease that latent celiac disease should not be treated with a gluten-free diet" and that "treatment should be reserved for those diagnosed with celiac disease". Why would it be bad to be on a gluten-free diet if you don't have celiac disease? There doesn't seem to be anything harmful about the diet. Does anybody know the reason for this statement?

I ask because I'm pretty much self-diagnosed. I just felt so much better after trying the diet for a couple of days and I haven't looked back. It has been two months and the couple of times that I've been accidentally "glutened" it has been terribly painful. So, even though my blood test was only borderline and I wasn't referred for a biopsy, I'm going to remain gluten-free. I do get a little upset though when I look back and realize that I should have insisted on being referred. There was no way of predicting though how good I was going to feel off gluten. It's not worth going back on gluten, but then I read this statement which seems to imply that there's something wrong with doing the diet if you aren't confirmed to have celiac and I find it confusing. Perhaps this part of the book is outdated?

Hi Anna....I read both of Dr. Peter Green's books on Celiac, one of which is just an updated version of the first one. I found the books informative and should be required reading for all Celiacs or suspected Celiacs. HOWEVER.......here's where I disagree with some of his advice. You have to remember that the good doctor is an AMA trained physician and old habits die hard. They are such sticklers for having the stupid "Gold Standard" of diagnosis and, if I remember correctly, Dr. Green thinks no one should go on the diet unless they exhaust every effort to be properly diagnosed, as defined by the AMA.

With Latent Celiac, you have symptoms now but test negative on the blood work or biopsy at this point in time. Supposedly, in future, you will test positive...when the disease gets really bad and much damage has been sustained. That's just plain hogwash! Most doctors will not give a diagnosis unless you have the biopsy, which means you would be required to eat gluten until you test positive. That's just crazy, if you ask me. You did a dietary trial and found out that gluten makes you feel bad. What's more scientific than that?

I was diagnosed via blood work and the results were so high, on all tests, there was no denying what I was suffering from. I had to go gluten-free immediately because I was so sick, I was in danger of needing a feeding tube. I was down to 97 pounds and losing 1 pound per day, at that point. Yet....they wanted me to have a biopsy. I was so sick and nauseated that I refused the biopsy and went home to heal. What a bunch of dopes. I started to feel better within 3 days and it was so obvious what gluten was doing to me, I have never looked back. Interestingly enough, I got a new PCP and she wanted me to have a biopsy also. They are really hung up on this....I showed her my blood work and when she saw the results, she shut up and then believed me. The dietary trial was unbelievable, in how fast I started to turn around.

You said you had borderline results? Seems to me you caught your celiac disease before it did horrible damage and elevated your numbers.

Pat yourself on the back that you put a stop to it now. You have celiac disease so don't look back. Dr. Green is a great doctor but he's from that institution that thinks the gluten-free diet without a picture of damaged villi is the wrong thing to do. For some reason, they think the diet is so restrictive, no one should follow it unless they have to. I totally disagree with this idea and they should eat with me for a week and see who's eating a restrictive diet......

[Marilyn R]

Doctors really like diagnosis with clear scientific evidence. That's in their comfort zone, and how they were trained.

[IrishHeart]

Doctors really like diagnosis with clear scientific evidence. That's in their comfort zone, and how they were trained.

.....and EXACTLY why people like me get so very sick losing 90 lbs. and start to lose muscle mass and hair and cognitive function and suffer nerve damage and on and on and on and cannot get the help that is required. It's criminal.

Doctors are hopelessly out of date regarding diagnostic criteria.

I found Dr. Green's book informative but I agree... Why should anyone WAIT to have villi damage????? that's insane!

A gluten-free diet does not necessarily have to be deficient or "limited" in any way! I know plenty of people who are perfectly healthy without eating gluten filled foods.

[eatmeat4good]

Every time I go to the doctor they recommend I get tested for Celiac. Whatever dude, you can make yourself sick if you want to, but I'm not making myself sick just so you can be happy about what I put on my plate. He still says, "We doctors just like to be sure of these things." WTF??? They didn't care to be sure of anything for the 7 years I was diagnosed with Fibromyalgia...and was told my physical health wouldn't get much better -that was just the way it was and I was supposed to accept it.

Thank god I didn't accept it.

The testing recommendations when you already have the answer are just ludicrous.

To thine own self be true.

[cassP]

sometimes your body & instinct is smarter than any doctor... i respect a lot of studies that come out of his center at columbia- but i glanced over his book at whole foods- and he mentions that if you do NOT have a DQ2 or a DQ8 that it is IMPOSSIBLE to have Celiac... and well, we know that isnt true. it doesnt mean i dont respect other things he has said or studied- but i ALWAYS use my filter- with everything i read

[IrishHeart]

sometimes your body & instinct is smarter than any doctor......... i ALWAYS use my filter- with everything i read

Amen to that, sister!!!!!!!!

If I didn't "save my own life" and stop "listening" to doctors....well, I'd be dead.

[Lori2]

Here are several paragraphs from an article I copied on 4/11/11:

Gluten sensitivity is really just starting to emerge as a recognized condition. As Peter Green, director of the Celiac Disease Center, explains to WSJ, today's gluten sensitivity research is roughly where celiac disease research was 30 years ago.

But that research just took an important step forward.

A new study from the University of Maryland shows that although GS patients have many of the same symptoms as celiac disease patients, they don't have the typical intestinal conditions as those seen in celiac disease patients.

The lead author of the study told WSJ that this is the first scientific evidence to show that GS does exist and is "very different from celiac disease."

I think that this is the study they were refering to:

Open Original Shared Link

Edited to add WSJ link:

Open Original Shared Link

[anna34]

Thanks everybody.

Gemini: I agree that it's not restrictive. I mean, we're restricted from eating crappy pre-packaged and fast food stuff, which we shouldn't be eating anyway. But really, I'm eating a healthier and more varied diet now than I was prior to "diagnosis".

Are there any nutrients in grains that we can't get from some other food?

[injust10pages]

With the amount of diseases linked to gluten intolerance and Celiac Disease I think its a "no-brainer" to stay away from gluten. Even though your diagnosis was borderline, clearly your body is telling you to stay away from gluten. If the pain and suffering isn't enough to deal with, it's becoming apparent that cancer and depression as well as other serious ailments are associated to the disease. I really hope this past month (Celiac Awareness Month) has opened a few eyes and Celiac Disease and gluten intolerance will become more recognized as a serious medical condition and hopefully one day become a thing of the past.

I have yet to read the book by Peter Green, but I will certainly look into it!

Thanks for the post!

[sb2178]

Thanks everybody.

Gemini: I agree that it's not restrictive. I mean, we're restricted from eating crappy pre-packaged and fast food stuff, which we shouldn't be eating anyway. But really, I'm eating a healthier and more varied diet now than I was prior to "diagnosis".

Are there any nutrients in grains that we can't get from some other food?

No. You can get everything you need from a gluten-free diet. However, those following a gluten-free diet tend to have lower intake of certain nutrients. If I remember correctly, it's vitamin D, calcium, folate, thiamin, fiber, and niacin. Options:

vitamin D-- supplement or sunlight

calcium-- fortified fake milk, actual milk, kale/collards, or a supplement (do not over use)

folate-- beans, spinach, citrus fruit, mutivitamin

thiamin-- pork, dairy, beans, nuts

fiber-- beans/lentils, whole grains, vegetables, fruit

niacin-- meat, potatoes, dairy, beans, nuts, whole grains

iron-- bean/lentils, cook in new cast iron, meat, collards, kale, dried fruit, fish, eggs (combine greens with meat/eggs and citrus for best absorption)

A diet made of up 50% produce, 25% protein/dairy, 25% grains is a pretty basic place to start. Select whole grains and toss in some healthy fat (avocadoes, nuts, olives, fish) and you're golden. A multivitamin supplement is a little extra insurance, and some people find they need more of some or rather at one time or another (I, for example, need an extra shot of magnesium everyday to have normal sleep habits. Weird, because there should be enough in my diet from food, but I do.)

[sb2178]

And part two:

I think that right now celiac disease is being diagnosed at the end-stage of the disease. That is equivalent to diagnosing breast cancer when it's already spread to the lymph nodes, bones, and liver. That's because the blood tests correlate to the status of flat intestines. Your biopsy may have still been negative, as stronger bloodwork typically means more intestinal damage.

Sensible diagnosis would be when it just starts, which is where you would still have negative or "borderline" test results using today's tests. Research shows that there are metabolic changes prior to intestinal destruction so the disease goes through several stages. That is pretty logical for an autoimmune disease. Other autoimmune diseases, like rheumatoid arthritis, are more easily treated when caught earlier, so I don't know why they aren't doing a better job of catching celiac earlier. (No, I'm not organized enough to have the links. I really need to start using delicious or something.)

I probably would have had totally positive test results in another 6 months, or after another year or two, but I also would have weighed 80 pounds and my teeth and hair would have fallen out by then. There are some earlier biomarkers being examined, primarily in high risk children. Unfortunately, it will likely take significant time for new tests to be validated and spread to actual clinical use. My statement is with borderline test results, symptoms that resolve promptly on the diet, and positive genetics, I have it. Why on earth would I keep causing myself pain and weight loss? That would be equivalent to a masochistic eating disorder.

[mushroom]

Doctors should understand that we come to them for advice - when we can't figure it out for ourselves. And for treatment if that is what we need. We decide whether to follow the advice, and whether to undergo the treatment. They are our servants not our arbiters.