Such a delemma

nancyl · Post by **nancyl** » Mon Mar 14, 2011 8:53 am

Good morning everyone,
I was diagnosed with LC back in October after several months of off and on diarrhea. My GI doc said it was a mild case that did not need medication. I watched what I ate, stayed away from dairy, etc. and felt pretty good with attacks maybe once a week. I found a good holistic nutritionist who recommended a very well respected chiropractor who works on the digestive system This is what he said after examining me. "There is no motility in the colon area and the ileocecal is misfiring". Before that I felt a lot of bloating and pressure under my ribs, it almost make me vomit. After my first session that feeling went away and every day I was having normal BMs. But, when I go back and he works on me I always have explosive diarrhea the next day then it's fine again. No one thinks it's food intolerances, but I have not been tested. My insurance does not cover Enterolab. I don't have pain except today I had pressure going right into my chest and two bouts of diarrhea. I now feel fine again. I take the following: multi-vitamin, vitamin D3, calcium, vitamin K, fish oil, and co-enzyme Q-10. I take Diarrhea Stop and Pepto bismol when needed. I want to say that I know I am not feeling as bad as a lot of you, but not knowing from one day to the next if I'm going to have an flare is tough to deal with.

Has anyone ever heard of a connection between LC and plaque in the abdominal artery? Cardiologist said it is caused by Lipoprotein (a) which is genetic.

Nancy

TooManyHats · Post by **TooManyHats** » Mon Mar 14, 2011 10:00 am

I have heard of that, it's called ischemic colitis. As far as I know, that's only one possible cause, but not the only one.

Post by **tex** » Mon Mar 14, 2011 10:18 am

Nancy,

More than anything else, the following phrase from your post leaped out at me as absolutely the biggest problem with patients who have MC, but who are unable to reliably control their symptoms:

Nancy wrote:No one thinks it's food intolerances

The problem is, no one ever thinks it's food intolerances, because that's what their ignorant doctors tell them.

Please don't misunderstand me, I'm not saying that doctors are not highly educated, because they are. Unfortunately, though, most of them are extremely ignorant of the effect that diet has on digestive system diseases, (because this information is almost totally omitted from their medical school training). Doctors are trained to prescribe pills - they're not trained to advise patients on how to treat disease by diet. This seems highly irregular, since diet is usually the most effective, and safest way to treat most health issues, especially digestive system problems, but sadly, many/most medical professionals have allowed themselves to become a puppet of the pharmaceutical industry, and they allow Big Pharma to do their thinking for them.

Also, please be aware that GI specialists in general, do not understand how to interpret the markers of LC. If they see only a slight increase in lymphocytic infiltration in the biopsy slides, they assume, (and incorrectly inform the patient), that this indicates a "mild" case. That is totally wrong. Research shows that there is absolutely no correlation between the various levels of lymphocyte counts, and the severity of the clinical symptoms of the disease. It's certainly possible that "mild" cases of MC might exist, but there is no way to predict which ones might qualify for a "mild" classification, simply by analyzing the biopsy samples. Remember, like everyone else, doctors are notorious for making assumptions that they shouldn't be making, and this causes them to make mistakes in the way that they handle various cases, unfortunately.

Nancy wrote:Has anyone ever heard of a connection between LC and plaque in the abdominal artery? Cardiologist said it is caused by Lipoprotein (a) which is genetic.

Yes, conventional medicine says that it's caused by low-density lipoprotein, (LDL), molecules becoming oxidized by free radicals. Linus Pauling and Matthias Rath theorized that human deaths from scurvy, during the ice age, when vitamin C was scarce, naturally selected for individuals who could repair arteries with a layer of cholesterol provided by lipoprotein(a), (which just happens to be found in vitamin C-deficient species such as higher primates and guinea pigs). The basis of the theory is that, although it eventually becomes harmful, the ability to deposit lipoprotein on artery walls was beneficial/essential to the survival of the human species, since it kept them alive until access to vitamin C allowed arterial damage to be repaired. This, of course, suggests that atherosclerosis is a disease of vitamin C deficiency.

I happen to have high LDL, presumably due to genetics, and yes, I do have atherosclerosis in my abdominal arteries. FWIW, I would surmise that atherosclerosis may well be linked with ischemic colitis, but I've never heard of it being associated with microscopic colitis. Of course, that doesn't mean that it's not a possibility.

Tex

P. S. FWIW, most of us have to pay for our Enterolab tests out of our own pockets.

MBombardier · Post by **MBombardier** » Mon Mar 14, 2011 10:41 am

Nancy, I am one who paid for Enterolab out of my own pocket. It took me months to decide to do that, but I am very glad I did. I now know that I have two gluten-sensitivity genes, one from each parent, and one is a main celiac gene. I now know that I passed a gluten-sensitivity or a celiac gene down to each of my children, and we can now do proactive things to protect their health, including taking our whole kitchen gluten-free as of today. I now know that I am most likely IgA deficient, which is not something Enterolab tests for, but which showed up in the test results. IgA protects all the mucous membranes of our bodies, and being deficient in this is a bad thing, but again, knowledge is power. Right now, I believe Enterolab still has their special of getting the casein test for free, so that's like getting a $99 discount.

About heart issues, I spent some time yesterday researching the genes to see if I could figure out enough to hypothesize which parent passed down which gene, and because of various factors, I believe that my mother passed down the gluten-sensitivity gene. This is the 0501 gene, Tex, which you also have. My mother died of congestive heart failure, and my brother (who by interpolation also has both these genes) is 10 years into congestive heart failure, having been diagnosed at age 49. The 0501 gene has some relation to cardiomyopathy, one manifestation being dilated cardiomyopathy, which is (you guessed it) congestive heart failure. I found a study by the Mayo Clinic reporting on the increase in ejection fractions in CHF patients treated with a strict gluten-free diet.

All this to say, Nancy, the Enterolab tests may be of more value to you, especially if you have heart issues, than just verifying that you are gluten-intolerant.

Gabes-Apg · Post by **Gabes-Apg** » Mon Mar 14, 2011 1:30 pm

Nancy
hi there.

I have used acupuncture treatments (before MC and after MC dx) and more recently lymphatic drainage massage. with both of these treatments within 12 - 18 hours of the treatment i have extra BM's that are quite soft and smelly, we believe it is the removal of the toxins.

Post by **tex** » Mon Mar 14, 2011 1:59 pm

Ah, but we are fortunate, Marliss, (believe it or not), to have that celiac gene, because it appears to be protective of idiopathic dilated cardiomyopathy, (IDC). It'll bet that no one here had ever even considered that there might be some benefit in having a celiac gene, but as we know, there's a silver lining to every cloud, (well, there is for most clouds, anyway).

In the present study, the frequencies of DQA1*0501, DQB1*0303 were found to be increased among the IDC patients, indicating that they are susceptible genes to the development of IDC. This conclusion was substantiated by the trend of increasing frequency DQA1*0501 with EF declination after stratification. However, HLA-DQA1*0201, which showed higher gene frequencies in the normal controls, manifested lower distribution in the IDC group, suggesting that HLA-DQA1*0501 and DQB1*0303 are related to the genetic susceptibility to IDC while DQA1*0201 allele confers protection from IDC. Perhaps the alleles or association disequilibrium between these alleles and other HLA loci influence the T cell immunity involved in myocardial damage.

http://www.cmj.org/periodical/PaperList.asp?id=LW8592

My ejection fraction is 66%, or at least it was, about a year and a half ago, when it was checked. (It may be lower now, since my blood markers showed signs of a heart attack, toward the end of my long, drawn-out surgery, about a year ago, but it's not surprising that my heart showed signs of ischemia, since I was rather low on blood, when I went into surgery, and my blood volume in circulation had to be even lower, by the time they finished hacking on me.

)

Tex

nancyl · Post by **nancyl** » Mon Mar 14, 2011 7:40 pm

Thank you all so much for responding. I will seriously think of the testing. I spoke with my nutritionist today and she knows of some doctors who use this lab.

Tex, you are amazing with your wealth of information.

Marliss, I am going to my cardiologist this week and will bring up some of my concerns. Hmmm, I wonder how receptive he will be. lol

Gabes, I was wondering about the work the chiropractor is doing. The nutrition also mentioned that sometimes there is a sort of regression to make progress. I have also been thinking of going to an accupuncturist, but will wait on that. Enough going on right now.

Thanks to all who responded,
Nancy

MBombardier · Post by **MBombardier** » Mon Mar 14, 2011 8:32 pm

Okay, Tex... bear in mind that my brain is soy foggy... What is the difference between IDC and CHF? Since my brother has the same gluten-sensitivity/celiac genes that we do, which he would unless either or both of my parents had two g-s genes, then his CHF would not be considered IDC because it would be considered inherited?

Post by **tex** » Mon Mar 14, 2011 8:56 pm

Well, dilated cardiomyopathy, (or DCM), is a condition in which the heart becomes weakened and enlarged, and cannot pump blood efficiently. ("Idiopathic", as you're well aware, simply means "of unknown origin"). The decreased heart function can affect the lungs, liver, and other body systems. DCM is one of several cardiomyopathies, which are diseases that primarily affect the myocardium, (the muscle of the heart). IOW, cardiomyopathy is a disease of the heart muscle itself. Different cardiomyopathies have different causes and affect the heart in different ways. In DCM a portion of the myocardium is dilated, often without any obvious cause. Left or right ventricular systolic pump function of the heart is impaired, leading to progressive cardiac enlargement and hypertrophy, a process called remodeling. Dilated cardiomyopathy is the most common form of non-ischemic cardiomyopathy. About one in three cases of congestive heart failure (CHF) is due to dilated cardiomyopathy.

Congestive heart failure (CHF), or heart failure, is a condition in which the heart can't pump enough blood to the body's other organs. It still continues to work, pretty much in a normal fashion, except that it simply cannot supply an adequate amount of fresh, oxygenated blood to all the organs of the body. Common causes of heart failure include myocardial infarction (heart attacks) and other forms of ischemic heart disease, hypertension, valvular heart disease, and cardiomyopathy, of course.

While all those conditions can cause heart failure, using the term "heart failure" to describe cardiac-related illnesses, (such as myocardial infarction, or cardiac arrest), is not correct. Heart failure is simply the inability of the heart to supply sufficient blood for the needs of the body's organs.

My celiac gene seems to be "working", because my heart was not found to be enlarged, when I had an echocardiogram.

Tex

P. S. I don't see how you can assume that your brother would have the sames genes as you.

MBombardier · Post by **MBombardier** » Mon Mar 14, 2011 10:05 pm

Hmmm... Thanks for the explanation, Tex. I will have to ask my brother what the cause of his CHF is. He thought he was having an asthma attack that he couldn't get under control, so he went to the emergency room. I guess he was in pretty bad shape. I can't remember if he got his pacemaker then or later.

LBombardier · Post by **LBombardier** » Mon Mar 14, 2011 10:11 pm

Didn't he have another ER visit and then got the pacemaker?