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Health Letter About Celiac Disease


Ursa Major

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Ursa Major Collaborator

I am subscribed to get several daily letters from alternative health sites, who will report on the nonsense from mainstream medicine, amongst other things.

This is an excerpt from today's daily dose (it starts out with a report on Merck's lawsuits, but keep reading).

Dear Reader,

You wake up. It's pouring rain. You jam your toe on the foot of the bed. You burn the toast. You open up the morning paper and your horoscope says: "Go back to bed. Things just aren't going to go your way."

That's what I imagine life must be like for executives at the drug giant Merck & Co. these days. A few months ago their best selling arthritis drug Vioxx had to be pulled from the market because of proven increased risks of heart attacks and strokes. This was followed by a perfect storm of Vioxx lawsuits (as many as 10,000 by some counts), along with accusations that Merck insiders knew about the drug's dangers for years.

And now Fosamax has taken a hit.

Fosamax is Merck's $3 billion per year osteoporosis drug that's drawing fresh controversy with a court battle over an unusual side effect. And then - as if all that weren't enough - along come alternative health care writers who tell their readers about safe, non-drug methods for treating and preventing osteoporosis.

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Rain, rain, rain

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According to the Associated Press (AP), a lawsuit filed in Florida claims that Merck has been negligent by attempting to downplay one of the drug's side effects.

In the e-Alert "Bad to the Bone" (4/30/03), I told you about a New England Journal of Medicine report that linked Fosamax (and other drugs in a class of pharmaceuticals known as bisphosphonates) with ocular inflammation. When untreated, this condition causes blurred vision, swelling and even blindness.

The Florida lawsuit highlights another unusual bisphosphonate side effect: osteonecrosis of the jaw; also known as "jaw necrosis" or "jaw death," prompted by a loss of blood supply to the jawbone. The suit has been filed on behalf of 250 Fosamax users who developed this condition.

The AP article notes that Merck representatives responded to the suit by stating that no cases of osteonecrosis of the jaw were reported among more than 17,000 subjects in clinical trials. Nevertheless, in January 2005 the FDA directed Merck to update the Fosamax label with a warning about the side effect. The company complied later in the year, but the lawsuit claims that the warning is not sufficient.

According to the Fosamax web site, other side effects include inflammation and ulceration of the esophagus, painful swallowing, stomach pain, indigestion and nausea.

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Grain drain

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When the subject of osteoporosis comes up, you'll rarely see any mainstream attention given to the fact that diet may be a key aggravating factor for many osteoporosis patients.

The problem: celiac disease (celiac disease), a condition in which gluten - a component of grains - reduces the small intestine's ability to absorb essential nutrients, such as calcium. The gluten dilemma is further complicated by the fact that celiac disease symptoms are so subtle that doctors often miss the diagnosis.

A 2005 study published in the Archives of Internal Medicine examined the link between celiac disease and osteoporosis in a test that compared 260 celiac patients with 580 healthy subjects. Blood tests revealed that celiac disease was much more common among subjects with osteoporosis. In addition, subjects with the most severe cases of celiac disease tended to have the most severe cases of osteoporosis.

Subjects who were diagnosed with celiac disease were asked to follow a gluten-free diet for one year. Bone mineral density (measured before and after the follow up year) was considerably improved in subjects who followed the non-gluten diet.

Barley, rye, oat and wheat are the four gluten-rich grains that celiac disease patients need to avoid. Unfortunately, gluten is hidden in many processed foods such as soups, soy sauce, low-fat or non-fat products, and even candy. Some common food ingredients that may contain gluten include modified food starch, hydrolyzed vegetable or plant protein, and some binders and fillers, as well as malt and natural flavorings.

Long-term calcium deficiency also plays a key role in osteoporosis. I'll address the calcium issue in an e-Alert next week.

From Jenny Thompson, from the Health Sciences Institute Open Original Shared Link


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jerseyangel Proficient

Thanks Ursula--it's encouraging that in the study, bone mineral density improved after a year gluten-free. Good news!

flagbabyds Collaborator

that's cool, thatnks for posting it

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    • captaincrab55
      Welcome sillyyak52,  I'm not sure of your age or if you live with your parents.  Is there a nurse in your family or friend of the family that may be able to explain your diagnoses?  You can get a second opinion by taking your lab results to another GI Doctor.   Good Luck!
    • trents
      So, you have three symptoms of a gluten-related disorder: weight loss, brain fog and lose stools. Of the three, the lose stools that firm up when you cut back on gluten is the only symptom for which you have reasonable cause to assume is connected to gluten consumption since the other two persist when you cut back on gluten. But since you do not have any formal test results that prove celiac disease, you could just as easily have NCGS (Non Celiac Gluten Sensitivity). In fact, what testing you have had done indicates you do not have celiac disease. NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten is the antidote for both. What muddies this whole question are two things: 1. Lack of official diagnostic data that indicates celiac disease. 2. Your persistence in consuming gluten, even though in smaller amounts. Your anxiety over the insomnia seems to outweigh your anxiety over the weight loss which prevents you from truly testing out the gluten free diet. What other medical testing have you had done recently? I think something else is going on besides a gluten disorder. Have you had a recent CBC (Complete Blood Count) and a recent CMP (Complete Metabolic Panel)? You say you don't believe you have any vitamin and mineral deficiencies but have you actually been tested for any. I certainly would be concerned with that if I was losing weight like you are despite consuming the high amount of calories you are.
    • trents
      Welcome to the forum, @AndiOgris! Recently upgraded guidelines for the "gluten challenge" recommend the daily consumption of at least 10g of gluten for at least 2 weeks to the day of testing to ensure valid testing, either for the antibody testing or the endoscopy/biopsy. 10g of gluten is roughly the amount found in 4-6 slices of wheat bread. So, there is a question in my mind as to whether or not your gluten consumption was intense enough to ensure valid testing the second time around. And was the tTG-IGA the only antibody test that was run? That is far from a comprehensive celiac panel. Concerning your negative biopsy, there is the possibility of patchy damage that was missed due to inadequate sampling as you alluded to. There is also the possibility that the onset of your celiac disease (if you have it) was so new that there had not yet been time to accumulate damage to the small bowel lining. Your total lack of symptoms at the time of diagnosis would seem to support this idea. Having said all that, and this is my informal observation from reading many, many posts like yours over the years, I wonder if you are on the cusp of celiac disease, crossing back and forth across that line for the time being. My suggestion would be to keep a close eye on this for the time being. Watch for the development of symptoms and request a more complete celiac panel a year from now. Here is an article that discusses the various antibody tests that can be run for celiac disease. Note: The EMA test is kind of outdated and expensive. It has been replaced by the tTG-IGA which measures the same thing and is less expensive to run.  
    • SaiP
      Hi, yes. Much more solid and firm, as opposite to diarrhea like when on gluten.
    • AndiOgris
      Hi all I have had a very confusing year with celiac disease (or perhaps not as it turns out) and wondered if anyone can help me make sense of it? My mother was diagnosed with celiac disease (in her 70s) a couple of years ago. I am in my early 40s and did not have any symptoms, but I took a blood test in November 2023 and it came back positive (TTG IGA 23.4 U/ml - normal range is below 7 U/ml). I was referred for a gastroscopy to confirm, which was scheduled for October 2024 (I use the UK health service, things move slowly!). The gastroscopy found no evidence of celiac disease.  My gastroenterologist has asked me to retake the blood test, and it just came back negative (TTG IGA 1.6 U/ml - normal range is below 7 U/ml). Given the long wait between my initial positive blood test and my gastroscopy, I reduced my gluten intake but never avoided it fully. In the 6 weeks before the gastroscopy and the second blood test, I made sure to eat at least two slices of bread a day as recommended, and often I had significantly more.  So what's going on? I understand that false positives are very rare for celiac blood tests, and usually associated with other serious diseases which I am fairly sure I don't have (my health is generally very good). After the negative biopsy, I thought that (i) either they did not take enough samples, or (ii) I have "potential celiac disease". But now that the second blood test has come back negative, I'm running out of plausible explanations...  Can anyone make sense of this? I have not spoken to my gastroenterologist yet - I wanted to get a better sense of where I am beforehand so that I can ask the right questions. Under the UK system, specialist doctors can be very hard to get hold of, so I need to make the most of my time with him! Thanks!        
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