Just got diagnosed-18
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Yellowsunshine
- Posts: 3
- Joined: Sun Mar 08, 2020 2:21 pm
- Location: Massachusetts
Just got diagnosed-18
Hey guys! I just got diagnosed with this a few weeks ago. I've been having constant diarrhea and stomach pain for a couple years but it got much worse recently. It might be because of an antidepressant I was on, which I'm now weaning off of. Is there anyone that got diagnosed with this in their teen years or 20s? I read that it's rare among this age group, and it makes me feel a little alone. I just started Budesonide this morning (taking 3mg instead of 9mg). Do you guys think this is okay with the coronavirus going on? It can be immunosuppressive so that's why I'm taking a lower dose.
Hi,
Welcome to the group. We have a sufficient number of members in that age group to prove that it isn't actually rare among younger people. Doctors tend to claim that it's rare, but while it might be uncommon, it certainly isn't rare. Our youngest member (of course her mother joined for her) was 2-1/2 years old when she was diagnosed. We haven't heard from her in years, but her mother made a few changes in her diet, and the last we heard, she was still doing great (with no meds, ever),
Unfortunately, corticosteroids won't normally bring remission at reduced treatment levels. Those levels will only work as a maintenance dose after remission is stable. But just stopping the antidepressant occasionally brings remission. So if the diarrhea has stopped, it's probably because you stopped the cause, not because of the low dose of budesonide. If the diarrhea didn't stop a few days after it was discontinued, then you most likely have already developed food sensitivities and will have to change your diet if you want to achieve long-term remission. You could increase the dose of budesonide to 9 mg to bring relief, but medications will only bring temporary relief.
As to whether or not it will weaken your immune system, probably not immediately, but it will begin to have that effect after 6–12 months if you continue to take it.
This is just my opinion, but I'm pretty sure that the reason why so many people have become so much more vulnerable to viruses, bacterial infections, cancer, etc., is because more and more people are living with suppressed immune systems these days due to widespread prescribing of so-called biologics and other immune system suppressing medications these days. The medical community appears to be hiding this dirty little secret, because they love to prescribe these drugs, and they work effectively. But the patient trades their immune system protection for symptom relief. In the meantime, the drug companies are getting richer and richer while destroying their patients' immune systems. But as I said, this is just my opinion. I can't verify the statistics because it's illegal to publish medical records, so we'll never know for sure. But the handwriting is on the wall, so to speak.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the group. We have a sufficient number of members in that age group to prove that it isn't actually rare among younger people. Doctors tend to claim that it's rare, but while it might be uncommon, it certainly isn't rare. Our youngest member (of course her mother joined for her) was 2-1/2 years old when she was diagnosed. We haven't heard from her in years, but her mother made a few changes in her diet, and the last we heard, she was still doing great (with no meds, ever),
Unfortunately, corticosteroids won't normally bring remission at reduced treatment levels. Those levels will only work as a maintenance dose after remission is stable. But just stopping the antidepressant occasionally brings remission. So if the diarrhea has stopped, it's probably because you stopped the cause, not because of the low dose of budesonide. If the diarrhea didn't stop a few days after it was discontinued, then you most likely have already developed food sensitivities and will have to change your diet if you want to achieve long-term remission. You could increase the dose of budesonide to 9 mg to bring relief, but medications will only bring temporary relief.
As to whether or not it will weaken your immune system, probably not immediately, but it will begin to have that effect after 6–12 months if you continue to take it.
This is just my opinion, but I'm pretty sure that the reason why so many people have become so much more vulnerable to viruses, bacterial infections, cancer, etc., is because more and more people are living with suppressed immune systems these days due to widespread prescribing of so-called biologics and other immune system suppressing medications these days. The medical community appears to be hiding this dirty little secret, because they love to prescribe these drugs, and they work effectively. But the patient trades their immune system protection for symptom relief. In the meantime, the drug companies are getting richer and richer while destroying their patients' immune systems. But as I said, this is just my opinion. I can't verify the statistics because it's illegal to publish medical records, so we'll never know for sure. But the handwriting is on the wall, so to speak.
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.
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Yellowsunshine
- Posts: 3
- Joined: Sun Mar 08, 2020 2:21 pm
- Location: Massachusetts
Thank you
Thank you so much for getting back to me Tex!
I didn't think that anyone would respond soon. It's good to know that it's not rare among younger people. I'm very hesitant to take medication, and I do think that MC is caused by a complex mixture of factors. I feel like the steroid will be more of a bandaid. I want to get to the root cause of this. I have changed my diet a lot, and so far it seems like it's only really helpful if I don't eat anything or eat only a little bit of food. But then I'm hungry. There is so much mixed information online as to what to eat and what not to eat. I just wish that I could know what to do to fix the root cause, and then do it. I wish that the issue could just be over.
How long have you struggled with this, if you mind me asking? And was there anything that you changed in your diet that helped your symptoms? Do you think that it isn't necessary to take meds (one of my major concerns is that the inflammation could get worse or could cause structural damage-although I'm unsure if this is true because my gastroenterologist won't get back to me)?
I didn't think that anyone would respond soon. It's good to know that it's not rare among younger people. I'm very hesitant to take medication, and I do think that MC is caused by a complex mixture of factors. I feel like the steroid will be more of a bandaid. I want to get to the root cause of this. I have changed my diet a lot, and so far it seems like it's only really helpful if I don't eat anything or eat only a little bit of food. But then I'm hungry. There is so much mixed information online as to what to eat and what not to eat. I just wish that I could know what to do to fix the root cause, and then do it. I wish that the issue could just be over.
How long have you struggled with this, if you mind me asking? And was there anything that you changed in your diet that helped your symptoms? Do you think that it isn't necessary to take meds (one of my major concerns is that the inflammation could get worse or could cause structural damage-although I'm unsure if this is true because my gastroenterologist won't get back to me)?
I've had the disease for a little over 20 years. I've been in remission for 15. It took me several years to do enough research to figure out the problem. And like you, anything and everything seemed to cause me to react at first. But my gastroenterologist first diagnosed me with cancer and then gave me every test he could think of to find it. After about 5 or 6 months of testing, and not finding it, he gave up and told me that there was nothing wrong with me, and told me, and that there was nothing more that he could do for me. He recommended a good psychiatrist. 
He gave me a colonoscopy as one of the many tests, but he didn't take any biopsies. I even asked him what the red patches were on my colon walls (I watched the monitor during the exam), and he told me that they were probably the sites of old infections. 
So I gave up on the medical community and started doing my own research of the medical literature. I finally figured out what I had and how to treat it (without any meds).
I had to totally avoid gluten for at least 3 or 4 months before I could even detect any other food sensitivities, because gluten dominates the immune system until we get it out of our body long enough for our immune system to significantly reduce the antibody level it maintains. I've never touched gluten since.
When you're trying to find a safe diet, you can't reintroduce any food back into your diet after you start avoiding it because the only way to stop the reactions by diet is to avoid all your food sensitivities at the same time (for as long as it takes). If you add anything back into your diet, that may be the very thing that continues to perpetuate the reaction. By keeping a food/reaction journal of everything I put in my mouth, I eventually tracked down all my food sensitivities. When I cut them all out of my diet, I was in remission in less than two weeks. Because I had been avoiding gluten for a long, long time.
These days, anyone can save a lot of time by ordering a stool testing kit from EnteroLab. Blood tests don't work, but EnteroLab's stool tests are very accurate, and the test results make selecting a recovery diet much simpler by eliminating all the guesswork. The tests save so much time, and trial and error testing, that most of us consider them the best money we ever spent on our health care.
What most of the medical community fails to understand is that we're all gluten-sensitive, but for most of us, it's non-celiac gluten sensitivity, so doctors have no way to test for it. Most doctors won't use the EnteroLab kits because medically-acceptable proof (that will gain their stamp of acceptance) that the tests work has never been published. So we order the tests, and treat ourselves by changing our diet to keep the disease in remission.
Many of us have never used any meds. but you can use the meds if you want. They don't work for everyone. But if they do work, they usually make life more pleasant while the diet is healing the gut. It often takes 6 months or more for the diet to bring remission, because the intestines heal very slowly. But younger people heal faster. The only way to maintain permanent remission of symptoms is to make the proper diet changes. According to published medical research, approximately 85 % of MC patients relapse after a treatment with budesonide is ended.
Tex
He gave me a colonoscopy as one of the many tests, but he didn't take any biopsies. I even asked him what the red patches were on my colon walls (I watched the monitor during the exam), and he told me that they were probably the sites of old infections. So I gave up on the medical community and started doing my own research of the medical literature. I finally figured out what I had and how to treat it (without any meds).I had to totally avoid gluten for at least 3 or 4 months before I could even detect any other food sensitivities, because gluten dominates the immune system until we get it out of our body long enough for our immune system to significantly reduce the antibody level it maintains. I've never touched gluten since.
When you're trying to find a safe diet, you can't reintroduce any food back into your diet after you start avoiding it because the only way to stop the reactions by diet is to avoid all your food sensitivities at the same time (for as long as it takes). If you add anything back into your diet, that may be the very thing that continues to perpetuate the reaction. By keeping a food/reaction journal of everything I put in my mouth, I eventually tracked down all my food sensitivities. When I cut them all out of my diet, I was in remission in less than two weeks. Because I had been avoiding gluten for a long, long time.
These days, anyone can save a lot of time by ordering a stool testing kit from EnteroLab. Blood tests don't work, but EnteroLab's stool tests are very accurate, and the test results make selecting a recovery diet much simpler by eliminating all the guesswork. The tests save so much time, and trial and error testing, that most of us consider them the best money we ever spent on our health care.
What most of the medical community fails to understand is that we're all gluten-sensitive, but for most of us, it's non-celiac gluten sensitivity, so doctors have no way to test for it. Most doctors won't use the EnteroLab kits because medically-acceptable proof (that will gain their stamp of acceptance) that the tests work has never been published. So we order the tests, and treat ourselves by changing our diet to keep the disease in remission.
Many of us have never used any meds. but you can use the meds if you want. They don't work for everyone. But if they do work, they usually make life more pleasant while the diet is healing the gut. It often takes 6 months or more for the diet to bring remission, because the intestines heal very slowly. But younger people heal faster. The only way to maintain permanent remission of symptoms is to make the proper diet changes. According to published medical research, approximately 85 % of MC patients relapse after a treatment with budesonide is ended.
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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Yellowsunshine
- Posts: 3
- Joined: Sun Mar 08, 2020 2:21 pm
- Location: Massachusetts
Enterolab
Thank you once again for your reply.
And wow. I'm so sorry that your doctor thought it was cancer, and put you through so many tests for many months. I know he was trying to help, but that must have been so scary and stressful. I wish he could have found out sooner for you. I also get what you mean about the modern medical community. I've become very frustrated as well. It seems like everything is an added bandaid to control the symptoms temporarily. Like the antidepressant, and then the steroid, and then being prescribed another antidepressant that causes a side effect of constipation in an attempt to maybe "mask" my symptoms. I get that it's all with good intention, but is this really the answer? I would like to believe that my body can heal itself. I just feel so lost. I had a million questions when I found out about this diagnosis, after struggling a lot with the symptoms of it. I never got any answers to my questions; just medications. That's why I started doing my own research online, and joined this community.
I'll look more into Enterolab. It seems like a very good investment to make. Do you know how Enterolab lab work differs from stool/blood tests that doctors give you? And after you changed your diet which helped to heal your intestines, could you reintroduce any of your food sensitivities? Or do you still avoid them?
Also, how long have you been active in this support forum if you mind me asking? I've been scrolling through many posts on here and I've seen that you've replied to a lot of them. Thank you for being so helpful! Not just to me but to a lot of people. It feels like an invisible battle, so it's good to hear about other people's stories/experiences, and to build up a network of support and resources when there's not a lot of it available in the medical community right now.
And wow. I'm so sorry that your doctor thought it was cancer, and put you through so many tests for many months. I know he was trying to help, but that must have been so scary and stressful. I wish he could have found out sooner for you. I also get what you mean about the modern medical community. I've become very frustrated as well. It seems like everything is an added bandaid to control the symptoms temporarily. Like the antidepressant, and then the steroid, and then being prescribed another antidepressant that causes a side effect of constipation in an attempt to maybe "mask" my symptoms. I get that it's all with good intention, but is this really the answer? I would like to believe that my body can heal itself. I just feel so lost. I had a million questions when I found out about this diagnosis, after struggling a lot with the symptoms of it. I never got any answers to my questions; just medications. That's why I started doing my own research online, and joined this community.
I'll look more into Enterolab. It seems like a very good investment to make. Do you know how Enterolab lab work differs from stool/blood tests that doctors give you? And after you changed your diet which helped to heal your intestines, could you reintroduce any of your food sensitivities? Or do you still avoid them?
Also, how long have you been active in this support forum if you mind me asking? I've been scrolling through many posts on here and I've seen that you've replied to a lot of them. Thank you for being so helpful! Not just to me but to a lot of people. It feels like an invisible battle, so it's good to hear about other people's stories/experiences, and to build up a network of support and resources when there's not a lot of it available in the medical community right now.
I created this forum in the spring of 2005 when the old discussion board some of us were using was high-jacked by a hired admin and his painkiller-addicted wife, and since they didn't believe in dietary treatments, it became a very hostile place for those of us who advocated dietary treatments. The last thing most MC patients need is more stress, so that's why I created this forum. I added the forum to an old business domain that I used (before the MC forced me to retire from that business), that's why it's got such a strange-looking domain name. After 15 years, I'm sure that our archives are by far the biggest aggregation of MC patient experiences anywhere in the world.
Before I discovered how to control the symptoms, I was so sick that I was sure that I'd be dead within a few years. When I looked in the mirror I hardly recognized the face staring back at me. I was hide and bones, aging fast, and I felt hopeless and all alone in the world. When I got my life back, I vowed that if I could help anyone else crawl out of that hopeless pit, I would. I'm 78 now, but I'm sure that I would have been gone a long time ago if I hadn't cleaned up my diet. I'm probably healthier than I deserve to be in view of my age. 20 years ago, I had to use a cane to walk, because of the arthritis in my knees. I retired that cane after I got my life back.
I was able to add corn and dairy products back into my diet without any digestive problems. But I had to give up dairy products again after about 6 months, because casein caused my finger joints to swell and make my fingers grow crooked (osteoarthritis). Also, I originally tested safe for soy, but I started reacting to peanuts 7 or 8 years ago, and an EnteroLab test showed that I'm now sensitive to soy, which means I also have to avoid most legumes. Our food sensitivities are listed under our avatars, and I believe my list is up-to-date.
If you haven't already checked it out, I'd recommend reading some of the posts in the section on Member Success Stories. We have quite a few members who stuck with the medical approach for many years before coming here to finally get relief.
Tex
Before I discovered how to control the symptoms, I was so sick that I was sure that I'd be dead within a few years. When I looked in the mirror I hardly recognized the face staring back at me. I was hide and bones, aging fast, and I felt hopeless and all alone in the world. When I got my life back, I vowed that if I could help anyone else crawl out of that hopeless pit, I would. I'm 78 now, but I'm sure that I would have been gone a long time ago if I hadn't cleaned up my diet. I'm probably healthier than I deserve to be in view of my age. 20 years ago, I had to use a cane to walk, because of the arthritis in my knees. I retired that cane after I got my life back.
I was able to add corn and dairy products back into my diet without any digestive problems. But I had to give up dairy products again after about 6 months, because casein caused my finger joints to swell and make my fingers grow crooked (osteoarthritis). Also, I originally tested safe for soy, but I started reacting to peanuts 7 or 8 years ago, and an EnteroLab test showed that I'm now sensitive to soy, which means I also have to avoid most legumes. Our food sensitivities are listed under our avatars, and I believe my list is up-to-date.
If you haven't already checked it out, I'd recommend reading some of the posts in the section on Member Success Stories. We have quite a few members who stuck with the medical approach for many years before coming here to finally get relief.
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.
I was diagnosed at age 17. I was on antidepressants for 2 years before stopping them. About six months after stopping them I noticed I had not had regular bowel movements since I was on them. My doctors took one stool sample checking for I think bacteria and parasites. When that came back clean I got my colonoscopy and endoscopy. My doctor at the time said that it may or may not be related to my antidepressants, but that she had started to see this pattern in young adults/teens.
I am 21 now. I don't have complete control over it, but that is largely due to me being not as strict with myself as I should be. I was in high school and now I am going into my final year of college. The summer before my sophomore year of college my family helped me pay for an Enterolab test. I never committed to doing elimination diets properly. When the Enterolab test said I couldn't eat gluten or soy it made it much easier for me to throw it out of my life. (I actually still eat soy, going to do some self testing with consumption to see what happens).
Anyways, if you have any age specific questions or worries let me know and maybe I will have had similar experiences :)
I am 21 now. I don't have complete control over it, but that is largely due to me being not as strict with myself as I should be. I was in high school and now I am going into my final year of college. The summer before my sophomore year of college my family helped me pay for an Enterolab test. I never committed to doing elimination diets properly. When the Enterolab test said I couldn't eat gluten or soy it made it much easier for me to throw it out of my life. (I actually still eat soy, going to do some self testing with consumption to see what happens).
Anyways, if you have any age specific questions or worries let me know and maybe I will have had similar experiences :)