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Of interest for Eric

Posted by lucy 6 (My Page) on
Fri, Jul 4, 08 at 18:01

Hi, just wondering what you thought about something (I was reminded of it when reading about the other poster's wife with celiac disease). A lot of people these days are being dx'd with sleep apnea (and put on Cpap for treatment). What's interesting is that there seems to be a whole syndrome, and while not everyone falls into all categories (that affect the patients), some of them include GERD (esophageal reflux), which also seems to be greatly helped by just raising the head of the bed x 6+" at night. Another common symptom is weight gain that's difficult to turn around, but it's been hard to discover whether it's a product of OSA (Obstructive SA) or an accompaniment). Many people are misdiagnosed prior to getting a sleep study, and so many of them are told they're just depressed (no sleep will do that to you!), hypothyroid, negligent about dieting, have underlying celiac disease (again, which came first, the CD or OSA?), along with a slew of other things. Have you looked into this at all, and what do you think of it in general? PS the best and by far most informative site would be Cpap.com/forum, but I'm not pushing anything here, just offering info.


Follow-Up Postings:

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RE: Of interest for Eric

The same could be said of hypertension - is it a risk factor, a disease, or a symptom or consequence of other conditions? The answer, of course, is yes, all of these.

>> (again, which came first, the CD or OSA?)

I don't see how apnea would cause celiac's disease (although it is possible, I suppose). A more likely connection is celiac's disease impairing the gut and reducing absorption of tryptophan, which reduces serotonin levels, which in turn lowers melatonin and sleep structure. Add to that impaired absorption of dozens of other nutrients, plus continual high levels of inflammation, and its a disaster.

Also (just wondering aloud) if 1 to 2 percent of the population have celiac's disease (3 to 6 million people in the US), and the overwhelming majority don't know and won't know until the damage has progressed, why isn't there a widespread campaign to identify people with celiacs disease so they can get the appropriate treatment? Instead, a large majority remain undiagnosed and instead are labeled with fatigue, depression, and other conditions that are symptoms or consequences of celiacs. These people are treated with SSRIs or other drugs that might make them feel better, but do absolutely nothing to treat the underlying pathology.


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RE: Of interest for Eric

Hi, seeing as you're answering for Eric, you're right in speculating about "A more likely connection is celiac's disease impairing the gut and reducing absorption of tryptophan, which reduces serotonin levels, which in turn lowers melatonin and sleep structure. Add to that impaired absorption of dozens of other nutrients, plus continual high levels of inflammation, and its a disaster." though I wouldn't count it as completely valid in its premises, and certainly not as the only one, but I believe a whole lot more people than your 3-6 mil. have celiac, and it actually seems to have quite a high profile lately - witness the large gluten-free aisle(s) in the stores these days. It's like anything else though, it will take a while til people are more aware of it, but because of its very nature, incorporating many vague-sounding symptoms that can be attributed to other diseases, it also can take some time to validly identify it, rather than just guessing and then throwing all kinds of 'cures' around, traditional or not.


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RE: Of interest for Eric

First of all, the estimated incidence of celiac disease in the U.S. (based on population genetics and comparison with incidence rates in other Western countries) is thought to be up to 1 in 250 million people, which would give us a little over a million people with celiac disease (not 3-6 million). Diagnosis is difficult, in part because even if patients have antibodies in their blood characteristic of the disease, they often won't show any signs of it on small bowel biopsy (the gold standard for demonstrating malabsorptive changes). Do we do a mass screening for these antibodies and then put everyone who's positive for them on a gluten-free diet, hoping to see a change in a wide range of vague symptoms (or to prevent symptoms in people who are currently asymptomatic)? Gluten-free diets are doable, but they're not something you want to undertake for a lifetime without very good reasons.

Or you could do endoscopies on all those antibody-positive patients and take biopsies of the small bowel. If those are normal (and very often, they are) what then?

Lucy has a good point - it's difficult to know how certain symptoms are interconnected, if they're related at all. Assuming that everything is due to one problem (celiac disease, sleep apnea or whatever) can lead you down the wrong road. For instance, there doesn't appear to be good evidence for sleep disorders in celiac patients directly related to nutrient malabsorption.

As for sleep apnea, I think it's been underdiagnosed in the past (though it's gotten much more attention recently). A common factor relating it, GERD, and Lucy's "slew of other things" is obesity, as a common cause. Sleep apnea isn't new, but one reason more attention is focused on it now is that obesity (especially morbid obesity) is more prevalent now.


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RE: Of interest for Eric

>> but I believe a whole lot more people than your 3-6 mil. have celiac.

Thats possible, it really depends on how one thinks of things. Going by the definition of celiac strictly as a disease of destruction of the villi in the intestines in response to dietary gluten, then 1% or 3 million US citizens is probably the best estimate today. If one thinks of it as any immune response or allergy to gluten which may or may not include damage to the intestines, then a much larger estimate is almost certainly correct, although that may not always be celiac disease according to the standard definition.

I suspect many people who have eliminated gluten from their diet and seen benefit declare themselves to have celiac disease, when this may or may not be the case. Such people are more likely to have celiac disease than the average person, although most of them probably don't - they may have a real immune reaction that causes real problems when eating wheat, but which is not celiac as it is understood and defined today. For example, 30 to 40 percent of people with autoimmune thyroiditis may benefit from eliminating gluten, but there is no indication that these 30 to 40 percent all have celiac disease.

>> the estimated incidence of celiac disease in the U.S. (based on population genetics and comparison with incidence rates in other Western countries)thought to be up to 1 in 250 million people.

Typo and old information. Recent research does not support the notion that the rate is between 1:1000 and 1:250. The first large epidemiologic study of the prevalence of celiac in the US was not conducted until 2003, and it suggested a rate in the non-at-risk population of 0.8%, with a much higher rate in families where one member was already diagnosed - putting the total rate closer to 0.9%). There is a NIH concensus statement from 2004 estimating 0.5 to 1.0 percent, and several more recent studies also put the rate around 1%. Which would be ~3,040,000 people in the US.

And essentially all studies show that diagnosis is pitifully low - people who accept the 1 in 250 statistics often indicate that only 1 in 1500 Americans are diagnosed, meaning that 5 out of 6 people who have the disease by their standards don't know it. Other studies indicate that 90% of people with celiacs are undiagnosed, which would be ~2.7 million people in the United States.

>> Or you could do endoscopies on all those antibody-positive patients and take biopsies of the small bowel. If those are normal (and very often, they are) what then?

The evidence is that a high titre of anti-transglutaminase antibodies indicates active celiac disease, even if damage is not apparent in the endoscope or in biopsy. Why wait until the damage is visible (and to a degree, irreversible) to act?? Yes, it is an inconvenience to remove all traces of wheat, barley, and rye from the diet. But where are the double-blind placebo controlled studies that prove it is not a major health hazard for people with anti-transglutaminase antibodies to consume gluten?

References:

"Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study." Arch Intern Med. 2003 Feb 10;163(3):286-92. (0.8% of the not-at-risk US population has celiac disease).

"NIH Consensus Development Conference on Celiac Disease." NIH Consens State Sci Statements. 2004 Jun 28-30;21(1):1-23. (estimates 0.5 to 1.0 percent of population has celiac).

"Ninety percent of celiac disease is being missed." J Pediatr Gastroenterol Nutr. 2007 Oct;45(4):497-9. (prevalence of celiac over 1%)

"Where are all those patients with Celiac disease?" Am J Gastroenterol. 2007 Jul;102(7):1461-3. (Celiac disease occurs in approximately 1% of the U.S. population.)

Here is a link that might be useful: Celiac disease - prevalence around 1%.


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RE: Of interest for Eric

Your link is from a British journal article and does not state a U.S. prevalence rate of 1%.

If, as you are doing, take the highest estimates of celiac disease prevalence in the U.S., you could wind up with three million or more potential cases. Experts in celiac do not suscribe to the "3-6 million" figure. Note that in this recent position paper from the Celiac Disease Center at Columbia University, they are still citing the 1 in 250 estimate along with the estimate of possibly higher numbers obtained from a multicenter study (the type of study, incidentally, that you have previously scoffed at the need for - irony?). So we don't actually know, except many experts think the problem is underdiagnosed.

"The evidence is that a high titre of anti-transglutaminase antibodies indicates active celiac disease, even if damage is not apparent in the endoscope or in biopsy."

This is incorrect. Celiac disease is not diagnosed by measuring antibody levels. This is emphasized in the Columbia University statement on celiac disease (the all-caps are theirs, not mine):


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Part II

Sorry, hit the post button prematurely.

Here's the Columbia University Celiac Disease Center statement on diagnosing the disease:

DIAGNOSIS OF CELIAC DISEASE DEPENDS ON AN ABNORMAL SMALL INTESTINAL BIOPSY TOGETHER WITH CLINICAL RESPONSE TO A GLUTEN-FREE DIET.

So no, measuring antibodies is not enough.

By the way - the "typo" you were alluding to in one of my statements appears to come from a misquote on your part. Are you really so desperate to score points that you'd do this? I've refrained from scrutinizing your posts for grammatical errors - surely you can extend others the same courtesy, assuming such errors actually exist.


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RE: Of interest for Eric

>> - the "typo" you were alluding to in one of my statements appears to come from a misquote on your part. Are you really so desperate to score points that you'd do this?

No, going up to your original post (4th from top), you can see this:

>> "is thought to be up to 1 in 250 million people,"

Up to 1 in 250 million people? Exactly what did you mean by that? And why do you routinely pick at points as insignificant as typos. For example, you started a recent post with this rebuttal:

>> Your link is from a British journal article and does not state a U.S. prevalence rate of 1%.

Nice try, but this "pick, poke and distract method" requires you to ignore the National Institute of Health Consensus Statement that I referenced that estimates a 0.5 to 1 percent incidence for the United States. Obviously, you would rather scrutinize my references and find some ridiculous objection buried somewhere than notice that I what I am suggesting comes from an NIH panel and its represents what is likely the best estimate available for the US.

I admit (and admitted) that the diagnostic criteria or definition of celiac disease includes evidence of damage on endoscopy or biopsy - yet there is evidence that celiac disease begins before damage is visible, and that anti-transglutaminase antibodies are 'highly predictive' of celiac disease (typically 98% sensitivity/90% selectivity or better), which means that it ain't perfect, but it is better than many many common diagnostic tests. No test is 100%/100% - your question about what would be done if someone tests false positive according to your strict criteria appears to be a red herring - there is always some uncertainty from such tests, and yet recommendations always seem to be developed with respect to re-testing if unsure, etc.

It's too bad that wheat isn't considered an 'herb' in the sense that other 'exotic' plants are - then we would have certain people warning about the dangers that millions of people face from this killer grass. But familiarity breeds comfort when it comes to assessing risk.


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RE: Of interest for Eric

"Nice try, but this "pick, poke and distract method" requires you to ignore the National Institute of Health Consensus Statement that I referenced"

I was commenting on your link and the fact that it did not mention estimates for U.S. incidence. I addressed elsewhere the variance in estimates of celiac disease incidence, and why selectively "picking" the top end of these imprecise numbers is questionable.
You're right that I mentioned "1 in 250 million people" instead of 1 in 250. But since I said right after that, that the estimate would give us a little over 1 million people with celiac disease, it was obvious what I meant.

It's disturbing that people might be steered to going on gluten-free diets for the rest of their lives based on nonspecific symptoms combined with antibody tests that are not accepted as sufficient for diagnosis by celiac disease experts. This is why evaluation by someone with valid medical credentials (and not unknown parties in an Internet forum) is essential.


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RE: Of interest for Eric

Hey you two - finished your p---g contest yet today? Why I wrote in the first place was only incidentally and possibly related to celiac, but I really wanted to hear more about OSA. And the reason was because someone recently referenced (on the forum I linked) information showing there was quite a large proportion of celiac 'cases' among OSA patients, which reminded me that other diagnoses were also being cited as 'markers' at least, if not causes. The point was to ask for opinions as to which came first, the OSA, the hard-to-shake obesity (which is actually NOT present in a fair # of OSA cases), the gluten intolerance, etc... because OSA is being linked (in trad. med. research) to more seemingly non-relatable dx's than one would imagine.


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RE: Of interest for Eric

Obesity is certainly not the only risk factor for sleep apnea - but it's a major risk factor, and is also commonly found in other conditions that have a possible association with the disorder, such as hypothyroidism, reflux and polycystic ovary syndrome.

So, some possible associations are difficult to evaluate because of this overlap.

Is there an association between this topic and herbalism? :)


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RE: Of interest for Eric

Probably not...


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Herbalism Forum?

Has anyone considered looking up Immune Disease in relation with celiac disease. Could be a link to each other.
Whats this got to do with herbs? This is an herbal Forum. Did you know you could e-mail each other on private business?


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