Hi, i was diagnosed with callagenous colitis 6 months ago. The symptoms I present with are slight discomfort in the lower right quadrant and soft light coloured stool (once or twice a day), the other symptoms are neurological ie feeling spaced out, poor memory issues, feeling down etc. oh and I also get very itchy.
I'm not that bothered by the GI symptoms, I just wonder if they are related to my neuro symptoms. My blood tests come back fine with only my liver running a little high.
I have been discharged by my GI consultant, as I don't have any inflamitory bowel issues. It seems unless I run off my feet with constant diarrhea they aren't interested.
My GP (who has never encountered this condtion) thinks it may be stress related, although I don't feel overly stressed. I've read about bacterial and yeast overgrowth but every other article seems to debunks the theory.
I've cut out alcohol, coffee, chocolate, spicy food etc. but it has no effect on any symptom.
I'm a man in my very early 40's 6ft tall (184cm) and weigh about 82kg (181lb) I'm reasonably fit and the only other thing I suffer from is Vitiligo.
Any advice will be gratefully recieved
Thanks
Newbie in search of advice
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Hi,
Welcome to the discussion board. I agree that your clinical symptoms appear to be more neurological than gastrointestinal. Both coeliac disease and MC (CC or LC) sometimes present that way. Believe it or not (despite any coeliac screening blood tests that you might have had that showed negative results), those symptoms are due to untreated gluten sensitivity (except for the itching — the itching is most likely caused by inappropriate mast cell degranulation or mast cell activation disorder (MCAD), associated with MC.
Mast cell issues are very common with MC, and many/most of us here have to deal with that problem. When mast cells degranulate, they release histamine, and the histamine causes itching. But when the mast cells that are degranulating are located in the intestines, the excess histamine can also cause inflammation, and digestive problems, and the digestive system inflammation can result in inflammation and pathological changes in other organs.
Your GI specialist dismissed you because he does not understand the disease very well, and because he did not know how to treat you. He also probably incorrectly assumed that the lack of clinical GI symptoms means that you do not have any intestinal inflammation. That's incorrect. The neurological symptoms are caused by the inflammation in the intestines, and the existence of the neurological symptoms prove that the intestines are inflamed.
I had the same neurological issues that you are having (and I also had the usual GI problems that are associated with MC), but they all resolved after I changed my diet. Virtually every one of us here is sensitive to gluten (despite negative blood tests), and most of us are also sensitive to dairy and soy. But the gluten is the primary problem that causes neurological symptoms, because gluten can cross the blood/brain barrier.
If I were in your situation, besides changing my diet, I would try taking an antihistamine each day, to see if that eliminates or at least reduces the itching. You can further reduce the itching by avoiding foods that are high in histamine content. Such foods include alcohol and chocolate (which you are already avoiding) dairy products, fish, all aged, dried, or fermented foods, etc. And you are correct — it's a good idea to avoid spicy foods at least whenever our MC is active.
Your GP is correct, according to my research. In my opinion, chronic stress (which can be in the form of either physical or emotional stress), is a prerequisite for the development of not only MC, but virtually all autoimmune-type diseases. Sometimes we may not even be aware of the stress, if it is internal (such as a disease that is not causing clinical symptoms), or emotional stress that is hidden in our subconscious.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the discussion board. I agree that your clinical symptoms appear to be more neurological than gastrointestinal. Both coeliac disease and MC (CC or LC) sometimes present that way. Believe it or not (despite any coeliac screening blood tests that you might have had that showed negative results), those symptoms are due to untreated gluten sensitivity (except for the itching — the itching is most likely caused by inappropriate mast cell degranulation or mast cell activation disorder (MCAD), associated with MC.
Mast cell issues are very common with MC, and many/most of us here have to deal with that problem. When mast cells degranulate, they release histamine, and the histamine causes itching. But when the mast cells that are degranulating are located in the intestines, the excess histamine can also cause inflammation, and digestive problems, and the digestive system inflammation can result in inflammation and pathological changes in other organs.
Your GI specialist dismissed you because he does not understand the disease very well, and because he did not know how to treat you. He also probably incorrectly assumed that the lack of clinical GI symptoms means that you do not have any intestinal inflammation. That's incorrect. The neurological symptoms are caused by the inflammation in the intestines, and the existence of the neurological symptoms prove that the intestines are inflamed.
I had the same neurological issues that you are having (and I also had the usual GI problems that are associated with MC), but they all resolved after I changed my diet. Virtually every one of us here is sensitive to gluten (despite negative blood tests), and most of us are also sensitive to dairy and soy. But the gluten is the primary problem that causes neurological symptoms, because gluten can cross the blood/brain barrier.
If I were in your situation, besides changing my diet, I would try taking an antihistamine each day, to see if that eliminates or at least reduces the itching. You can further reduce the itching by avoiding foods that are high in histamine content. Such foods include alcohol and chocolate (which you are already avoiding) dairy products, fish, all aged, dried, or fermented foods, etc. And you are correct — it's a good idea to avoid spicy foods at least whenever our MC is active.
Your GP is correct, according to my research. In my opinion, chronic stress (which can be in the form of either physical or emotional stress), is a prerequisite for the development of not only MC, but virtually all autoimmune-type diseases. Sometimes we may not even be aware of the stress, if it is internal (such as a disease that is not causing clinical symptoms), or emotional stress that is hidden in our subconscious.
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.
You're very welcome. The disease seems to affect each of us somewhat differently, so we each have to work out a treatment that works best for our own particular situation. That's what makes it so tough for doctors to treat the disease, because they tend to think in terms of treatments that work for everyone, or at least for most patients.
Tex
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.
It's going to be tough as I could just about live on pasta and bread but I'll try just about anything about now.it's a good job I'm rather fond of fruit, vegetables and good old meat, although my grocery bill will go skyward. If I start excluding gluten from my diet, roughly how long is it til I see some benefit if any. If it turns out the gluten is not my trigger should I then reintroduce it and then move to exclude dairy.
Thanks
Thanks
Gluten is the antigen that predisposes us to all the other food sensitivities (through sort of a cross-reactivity process). It would be extremely rare for someone to be sensitive to casein or soy, unless they are gluten-sensitive first. If you are going to try to fine tune your diet by excluding one item at a time, then you have to continue to eliminate that item as you test others by eliminating them. Otherwise if you have more than one food sensitivity, you will never be able to reach remission, because all food sensitivities have to avoided in order for our gut to heal. Virtually all of us have at least 2 or 3 problem foods, and most of us have more than that.
It takes a long time for the gut to heal from gluten damage, because anti-gliadin antibodies have a 120 day half-life. Most of us continue to react for at least weeks (and usually months), after we eliminate gluten from our diet, unless we take budesonide. A few lucky people see relief much sooner, but most of us are not that lucky. Budesonide will help to mask the symptoms to give the diet time to heal the gut. However, many of us cannot detect some of our food sensitivities until we reduce the budesonide dose, or wean off it completely.
Most other food antibodies have only about a 5 or 6 day half-life. Therefore, when the damage from gluten finally heals, then the other foods can be tracked down much faster, because when you cut them out of your diet, you will see improvement within a few days (if that particular food is the last one that's a problem). The bottom line is that you may or may not see any significant improvement before the last problem food is eliminated. That's why some people start with an exclusion diet until they reach remission, and then they test foods by adding them back in one at a time.
Tex
It takes a long time for the gut to heal from gluten damage, because anti-gliadin antibodies have a 120 day half-life. Most of us continue to react for at least weeks (and usually months), after we eliminate gluten from our diet, unless we take budesonide. A few lucky people see relief much sooner, but most of us are not that lucky. Budesonide will help to mask the symptoms to give the diet time to heal the gut. However, many of us cannot detect some of our food sensitivities until we reduce the budesonide dose, or wean off it completely.
Most other food antibodies have only about a 5 or 6 day half-life. Therefore, when the damage from gluten finally heals, then the other foods can be tracked down much faster, because when you cut them out of your diet, you will see improvement within a few days (if that particular food is the last one that's a problem). The bottom line is that you may or may not see any significant improvement before the last problem food is eliminated. That's why some people start with an exclusion diet until they reach remission, and then they test foods by adding them back in one at a time.
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.
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UkuleleLady
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- Location: Texas
Hi Henning,
and
Tex says it all so much better than me, but, I really hope you will consider gluten free. It could be the key to you regaining your health. There is some evidence (dr Fasano) that no one can fully digest gluten. The molecule is twisted and we don't produce the right enzyme to break it down. Some get very sick from this, others have no symptoms, others have various autoimmune disorders that may or may not start with gluten sensitivity.
I'm not surprised your GI dismissed you, they happen to be pretty clueless about the mesenteric immune system/food allergies/etc. I believe the two GIs I've seen in recent years are in a lot of denial. The top celiac researchers, however (Marsh and Fasano, for example), are not.
Also CC is a form of IBD so it's ridiculous that your GIs have dismissed you on the basis that you don't have inflammatory bowel issues.
I've found that the only way for me to feel better is to advocate for myself by doing my own research, hanging out here, and getting on meds (budesonide) through my GI.
Anyway, I wish you all the best and hope that you will benefit from coming here as I have.
Nancy
and
Tex says it all so much better than me, but, I really hope you will consider gluten free. It could be the key to you regaining your health. There is some evidence (dr Fasano) that no one can fully digest gluten. The molecule is twisted and we don't produce the right enzyme to break it down. Some get very sick from this, others have no symptoms, others have various autoimmune disorders that may or may not start with gluten sensitivity.
I'm not surprised your GI dismissed you, they happen to be pretty clueless about the mesenteric immune system/food allergies/etc. I believe the two GIs I've seen in recent years are in a lot of denial. The top celiac researchers, however (Marsh and Fasano, for example), are not.
Also CC is a form of IBD so it's ridiculous that your GIs have dismissed you on the basis that you don't have inflammatory bowel issues.
I've found that the only way for me to feel better is to advocate for myself by doing my own research, hanging out here, and getting on meds (budesonide) through my GI.
Anyway, I wish you all the best and hope that you will benefit from coming here as I have.
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Hi Henning, I sure wish I had known what I know now at your age!! My life might have been much more comfortable had I gone gluten free in my early 40's. I hope you find your way to go completely gluten free (not only mostly gluten free). If you feel uncertain about the need, you could always be tested. In the meantime, I'd go gluten free while working it all out.
Good luck!!
Good luck!!
Bacon and eggs is my favorite breakfast, but if you're short on time, GF cereals are always an option. If you're a cereal fan, most of us can tolerate the Chex brand of gluten-free cereals. They come in at least 6 different flavors, including Corn Chex, Rice Chex, Honey Nut Chex, Cinnamon Chex, Apple Cinnamon Chex, and Vanilla Chex. Be sure the box says Gluten-Free though, because most General Mills cereals still contain gluten, including Chex brands such as Wheat Chex.
Also, Kelloggs makes a gluten-free version of Rice Krispies that's based on brown rice. Be sure that the box says Gluten-Free though, because the ones that you see in the stores will usually be the original version that contains gluten. You can find a few other brands of GF cereals at health food stores, usually priced at a premium. The Chex cereals are priced the same as regular mainstream cereals, though. With almond milk or coconut milk, they should make a quick and easy (and most importantly, safe) breakfast.
You're off to a good start. Best of luck with your dietary treatment program.
Tex
Also, Kelloggs makes a gluten-free version of Rice Krispies that's based on brown rice. Be sure that the box says Gluten-Free though, because the ones that you see in the stores will usually be the original version that contains gluten. You can find a few other brands of GF cereals at health food stores, usually priced at a premium. The Chex cereals are priced the same as regular mainstream cereals, though. With almond milk or coconut milk, they should make a quick and easy (and most importantly, safe) breakfast.
You're off to a good start. Best of luck with your dietary treatment program.
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.