MICROSCOPIC COLITIS SUPPORT

On Saturday, I was reviewing a colonoscopy biopsy lab report, that listed LC. The GI's assistant was nice enough to send a summary of my results in a letter that said "your doctor has reviewed your lab results and would like to schedule a follow up in 2 months". Really? No summation of findings, not guidance, no urgency. So, like many of you, I'm on my own. The only advice I've received from any docs is to use Immodium. My GI doc must get paid far more for procedures than patient care. Sorry for venting, it's just frustrating, as I'm sure you know. So, I'm really new to this news and barely informed. I started reading Wayne Persky's book yesterday, and have tried to read on this discussion forum but, I'm overwhelmed. (Thank you, Wayne, for your investment of time and sharing your knowledge! Crowdsourcing solutions is far better than no help at all. I appreciate you.)

I think any diagnosis is followed by stages of grief, and my denial is screaming:
How do symptoms suddenly start, without previous indications of a problem?
How can I have this disease and only discover it in my 50s?
Can this be caused by food poisoning, bacteria, etc., and can that be the (temporary) cause of excess IELs (intra-epithelial lymphocytes)?
Does anyone have a diagosis and find out it was acute illness, not a life long disease?

WD for two months is no fun. Without food senstivity testing, I feel like any diet changes I try are just a wild guess. But, how do we know if Enterolab testing is legitimate and not just a money making scheme? I mean no disrespect, I've just heard so many negative opinions of food sensitivity testing. Are the results reliable? How do we know they're reliable? So, if I do that testing, does my current diet matter? If I stop all the things recommended for phase 1 recovery, will those sensitivities still show up? Forgive my ignorance, but if I don't have the food, and don't produce antibodies, how does the test know I'm sensitive? Also, it sounds like it would be beneficial to request "selective IgA deficiency" testing. Is that right? My general practitioner (family practice) just looked at me like I was crazy, but agreed to test my magnesium. Not sure the exact test, but he agreed to order it. Now I'm going to ask for "selective IgA deficiency". Is that right? By the way, celiac testing was negative.

If GI docs at Mayo clinic recommend dietary changes before medication, what is their dietary advice? Has anyone come across this? Is it worth going to the Mayo clinic? Has anyone gone to the Mayo clinic for help?

After my VERY BRIEF time reading about MC, my brain is just telling me I'm allergic to food. Is that essentially it? We're allergic to food?

Also, is our body attacking itself, because of the food?

Thanks for listening and sharing.

Hi,

Welcome to the group. It's almost my bedtime, so rather than try to answer all your questions, I'll post a canned response that probably covers most of what you're asking except specific information about EnteroLab and the Mayo Clinic. I'm not sure what sort of response you'll get from a Mayo gastroenterologist these days, but their G.I. department is usually ranked as the number one G.I. department in the U.S. by U.S. News & World Report, year after year. The reason we use an EnteroLab testing, is because they're the only lab that yield results that actually work for the food sensitivities caused by microscopic colitis, and yes, and IGA deficiency test will give you the results you want in order to decide whether your qualified for stool testing or not, because EnteroLab stool tests are based on IgA antibody testing. Most blood testing and skin testing for food sensitivities is based on IgE antibodies, because IGA antibodies rarely show up in the blood in quantities sufficient to allow accurate testing. That said, here is a a little basic information about the disease:

Microscopic colitis (MC), once diagnosed, is a lifetime disease. But the symptoms can be controlled. Medications are only temporary treatments. They only address the symptoms, not the cause of MC. To stop the inflammation from recurring with each meal, we have to avoid every food or medication antigen that causes our immune system to produce antibodies. Some physicians are beginning to learn this but many of them are still way behind on the learning curve and they incorrectly insist that diet has nothing to do with the disease. In fact it has everything to do with not only microscopic colitis, but all inflammatory bowel diseases. Claiming that food has nothing to do with digestive diseases is a lot like claiming that breathing polluted air has nothing to do with respiratory diseases like asthma, COPD, and lung cancer.

MC is usually not caused by food sensitivities, but food sensitivities tend to develop after the disease begins. Research shows that when the genes that predispose to microscopic colitis is triggered, the genes that predispose to gluten sensitivity [which causes increased intestinal permeabilty (leaky gut)] are also triggered. This allows peptides (which are simply medium-length chains of amino acids that are the result of incomplete digestion of a food molecule) to enter the bloodstream. No one can completely digest gluten. This results in the creation of peptides. Ordinarily this doesn't matter, but it matters a great deal if a person has leaky gut. Since those peptides are obviously not supposed to be in the blood, they trigger an immune system reaction. The immune system begins to react to those foods every time they are eaten, thus causing chronic inflammation . This is why some of the foods that we have been eating for most of our life can suddenly begin to cause chronic inflammation by provoking our immune system to produce antibodies against them.

Similar to food sensitivities, certain drugs can also cause the immune system to produce antibodies that trigger MC symptoms. In some cases, just stopping the use of those drugs can bring remission of the MC symptoms. These drugs include antibiotics, NSAIDs, PPIs, SSRIs, SNRIs, statins, bisphosphonates, ACE inhibitors, beta blockers, and others. But in many cases, food sensitivities develop before the use of the drug is stopped, so the diet must also be changed in addition to avoiding the drug that causes the inflammation. But the bottom line is that if we stop the antibodies from being produced by avoiding the offending foods or drugs, then we can stop the inflammation from being produced and the symptoms will begin to fade away. And the symptoms will stay away as long as we are very careful with our diet (and the medications we use).

There is no one-size-fits-all diet that will control the disease, but contrary to the claims of the medical "experts", virtually every MC patient is sensitive to gluten. For most, it's a form of non-celiac gluten sensitivity, so that the celiac screening tests used by doctors are worthless for detecting the type of gluten sensitivity that is typically associated with MC or other IBDs. But non-celiac gluten sensitivity causes basically the same symptoms as celiac disease.

Many, many doctors have mistakenly informed many, many MC patients that they are not sensitive to gluten based on a negative celiac test result. The claim that a negative celiac test result means that a patient cannot be sensitive to gluten simply is not true, because doctors have no way to officially diagnose non-celiac gluten sensitivity. A positive celiac test result can confirm gluten sensitivity, but a negative celiac test result cannot rule out gluten sensitivity. Many doctors mistakenly believe that a negative celiac blood test result rules out gluten sensitivity, but there is no medical justification for making that assumption, it's simply incorrect.

I hope that some of this is helpful. Again, welcome aboard.

Tex

Hi there, I totally understand your frustration and venting is more than welcome here! It's unbelievable that you didn't get any guidance or summary of findings from your GI doc. I'm so sorry you're having to navigate this on your own.

First of all, take a deep breath and know that you're not alone. Many of us have been in your shoes, feeling overwhelmed and confused. Wayne's book is a great resource, and this community is here to support you.

Regarding your questions, I'll try to help clarify some things. Yes, it's possible to have no symptoms or indications of a problem before diagnosis. And, unfortunately, it's not uncommon for people to be diagnosed in their 50s.

As for food poisoning or bacteria causing the disease, it's not a proven cause, but some research suggests that certain infections might trigger the immune system to react in people with a genetic predisposition.

Regarding Enterolab testing, it's a topic of debate, and some people have had positive experiences, while others haven't. The reliability of the results is a valid concern. It's essential to understand that food sensitivity testing is not a definitive diagnostic tool, but rather a guide to help identify potential triggers.

The test works by measuring the immune system's response to specific foods, so even if you're not consuming those foods, the test can still detect the immune response. It's not just about producing antibodies; it's about the immune system's reaction.

Requesting selective IgA deficiency testing is a good idea, especially since you've already had negative celiac testing.

The Mayo Clinic is a reputable institution, and their dietary advice might be worth exploring. Some people have reported positive experiences with their approach, which often focuses on dietary changes before medication.

Lastly, to simplify things, MC is not exactly an allergy to food, but rather an immune system reaction to certain foods, which can lead to inflammation and damage in the gut. And, yes, in a way, our body is attacking itself due to the immune system's reaction to food.

You're doing great, considering you've just started learning about MC

Thank you tex and fredi223. Appreciate the warm welcome and guidance.