Hi there,
I'll keep this as brief as possible. I was diagnosed with IBS about 12 years ago, after multiple tests and procedures, including two colonoscopies. My GI doctor then termed me a "medical mystery," which was very encouraging. After moving a couple years ago, I finally decided to see GI specialist last year because my symptoms were getting worse. So, after a couple other tests, I had a colonoscopy last week. Initially, there was nothing really of note, but then the biopsy results showed microscopic colitis (lymphocytic). Anyway, my doctor basically just gave me the diagnosis but without much in the way of treatment options. So I'm going to email her tonight to ask for a follow-up appointment, but was hoping to get some recommendations about medication, therapies, etc. I might also look into working with a nutritionist because I have a feeling that diet is going to play a big part. So if anyone has any ideas or recommendations about next steps, I would greatly appreciate it! Thank you.
Newly diagnosed
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Newly diagnosed
I'm a mom to two small children, and teach special education. I was mis-diagnosed with IBS about 12 years ago, and was just diagnosed with MC after biopsies.
Hi,
Welcome to the forum. You may have better luck picking a GI specialist that most of us, but many (most) gastroenterologists still mistakenly believe that diet has nothing to do with treating MC, so they try to treat the symptoms by prescribing drugs. But that only works for a while. Once diagnosed, MC is a lifelong disease. But the symptoms can be controlled. Many people try medications first, and then discover that they are are only temporary treatments, and of course they only treat 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, because we are all somewhat different, 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.
If you are interested in learning how to control your symptoms by diet changes, you came to the right place, because we have been doing that for over 13 years now, and during that time thousands of members have been able to get their life back, with or without any medications. If you're really serious about stopping the inflammation, you'll find that home cooking (from scratch, using whole, pure foods) is usually necessary. Most processed foods (even GF foods) contain so many ingredients that many of them contain one or more ingredients that will cause us to react. Everyone is different, and achieving lasting remission while eating processed foods is very difficult to do.
I hope that some of this will be helpful.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the forum. You may have better luck picking a GI specialist that most of us, but many (most) gastroenterologists still mistakenly believe that diet has nothing to do with treating MC, so they try to treat the symptoms by prescribing drugs. But that only works for a while. Once diagnosed, MC is a lifelong disease. But the symptoms can be controlled. Many people try medications first, and then discover that they are are only temporary treatments, and of course they only treat 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, because we are all somewhat different, 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.
If you are interested in learning how to control your symptoms by diet changes, you came to the right place, because we have been doing that for over 13 years now, and during that time thousands of members have been able to get their life back, with or without any medications. If you're really serious about stopping the inflammation, you'll find that home cooking (from scratch, using whole, pure foods) is usually necessary. Most processed foods (even GF foods) contain so many ingredients that many of them contain one or more ingredients that will cause us to react. Everyone is different, and achieving lasting remission while eating processed foods is very difficult to do.
I hope that some of this will be helpful.
Again, welcome aboard, and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks for your quick reply back to my post. I have been doing some research, so I am aware of the possible gluten sensitivity. I actually have gone gluten-free numerous times over the past 12 years, with mixed results. I have also tried multiple different diets, but it's been hard to stick to some of the more restrictive ones because of being so busy all the time, and not forcing the rest of my family to follow the one I'm on. Hence why I really want to find a nutritionist to work with. I would also like to find a new GI, since I have a feeling mine is just going to try to push meds on me, but as you said, it's hard to find ones that really understand and know about MC. I'm also looking into connections to other autoimmune disorders. Anyway, hopefully I will be able to learn some more from this support group.
I'm a mom to two small children, and teach special education. I was mis-diagnosed with IBS about 12 years ago, and was just diagnosed with MC after biopsies.
The GF diet is not an in-and-out option like other diets. It's a lifestyle that has to be adopted for life because it usually takes a while to work. Early on, it can be a full-time job, but it gets easier after a while. It usually takes a month or two to see any results because gluten antibodies have a much longer half-life than other food antibodies — 121 days. Most food antibodies have only about a 6-day half-life. That may be why you didn't have any luck with the diet. And you probably have other food sensitivities. They all have to be excluded from the diet concurrently in order to stop the inflammation.jmbartus wrote:I have also tried multiple different diets, but it's been hard to stick to some of the more restrictive ones because of being so busy all the time, and not forcing the rest of my family to follow the one I'm on. Hence why I really want to find a nutritionist to work with.
I can appreciate your observation, though — the GF diet is not for those who can't (or are not willing to) commit to it wholeheartedly for whatever reason. And raising a young family is a good, valid reason. That's certainly a full-time job by itself. Many members in a similar position adopt the GF diet and take budesonide to mask the symptoms of the other food sensitivities until they can find time to identify and remove those foods from their diet, also. If there were just you and your husband, and you were older, it would be easier to do the diet, because he might be willing to do it with you. That really simplifies things. I guess that's one of the reasons why this disease is usually reserved for those of us who are near retirement age anyway, in case we might be looking for something to make life more "interesting".
None of our members have ever been able to find even a single nutritionist or dietician who understood MC, and how to treat it. Most have been trained to treat IBDs such as Crohn's and ulcerative colitis, and they base their treatments on that knowledge, but the treatments they recommend will not work for MC, unfortunately. Everyone has pretty much wasted their money, so far.
At any rate, in your situation, you will probably have to use a combination of diet and medications in order to control your symptoms. At your young age though, I would certainly agree that it wouldn't be a good idea to get caught up in a program that uses more and more powerful drugs as time goes on, when most of your life is still ahead of you.
Over a dozen years ago, we did an informal poll on additional autoimmune diseases:
How Many of Us Have Other Autoimmune Issues?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.