It has been quite a while since Ive posted, and I thought it was time to check in. This forum is still the best source of information I have found, so I thought I’d share some more of my story. I have never been diagnosed with MC and I know my symptoms are not as severe as many on this board, but it has been enough to completely disrupt my life.
Like many people it took me about 10 years to discover the connection between my diet and the symptoms I was having. I can still clearly remember the first ‘crisis’ I had. Seemingly out of nowhere I could feel my bowl spasm, the D began and I was passing blood and mucus as well. After taking a battery of exams I will never forget the doctor telling me that nothing was wrong. I spent several months like this until most of the symptoms began to fade. Every few years I would have another ‘crisis’. Usually for me the C was worse. It feels like my whole digestive system just…stops. Aside from the fatigue, I would lose my appetite, a lot of weight, and when this would continue for long enough, other symptoms such as hair loss would materialize. I realize now that I would never really recover and I was always alternating between C and D, which I came to think of as normal.
About 3 years ago I was put on an elimination diet, and found this forum at about the same time. I did the enterolab tests which showed I had problems with gluten, soy and that I have the double HLA-DQ 3 gene. After 3 years now of being Gluten and soy free I can say things are better… and worse. Most days norman is my friend. As Im sure many of you can relate to, there simply aren’t any words to describe what it’s like to have normal BMs after so long without. I really had forgotten what ‘normal’ was. However, I have continued to relapse with more frequency. A few of the times I am almost certain I was ‘glutened’ , others I really cannot say. My symptoms are not as intense or as prolonged as they were when I would relapse before, however in many ways the experience is much worse. The first such ‘crisis’ I had, I had enough ‘reserves’ to push through and force myself to work ect. Now it takes longer and longer to recover, and I feel that I never really bounce back. This is true of any normal stress full incident or normal illness as well.
About a year or so ago I began having trouble sleeping. I would normally wake at about 5am(but sometimes 2 or 3), hot, extremely anxious, and unable to relax or go back to sleep. Not being able to digest is one thing, but not being able to sleep as well is really the pitts. My doctor at the time diagnosed me with Adrenal fatigue, I did the herbs and diet for about a year, but still have problems sleeping. I finally went to see an endocrinologist, my cortisol tested normal, but my thyroid was off and I was prescribed replacement hormones. I then went another MD for another opinion, and more tests. Turns out my thyroid is ok, but my hypothalamus is not working properly, and I have what is called non-alcoholic fatty liver disease, which was probably caused by malnutrition. I have for years on occasion (usually a few hours after dinner) experienced an extreme stabbing pain in the middle of my torso. The pain was enough to literally bring me to my knees, probably the most intense pain I have ever felt. I used to think it was gas pains, but I have read it is a symptom of this liver disease. So FYI if you have such an experience.
I have been thinking recently that the reason for my continued fatigue and relapses maybe other food intolerances I have not yet identified. Or the whole carbo/bacteria cycle outlined in the SCD book. Im thinking of trying the SC diet again as my enterolab tests show Im ok with dairy, but I don’t know that I have the will power left. Maybe if I knew for certain what my continued issue was. I always lose a bunch of weight and feel really hungry on low carb diets.
I feel like Ive been running a marathon that won’t end. Sometimes I think maybe it has, but recovering from it may take quite a while as well. I still think the important thing is not to stop trying. The recent post Gabes made about acceptance really hit home for me. After almost 20 years of dealing with this illness, Ive finally come to realize that some things you have to accept, and to be grateful for what brings you joy.
Well, thanks for reading…
Health and Happiness,
Tony
My Update
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IDontGiveA
- Little Blue Penguin
- Posts: 25
- Joined: Mon Feb 15, 2010 9:41 am
- Location: Brazil
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Tony
wow, you have been doing a marathon!
you use way way less energy 'going with the flow' , trying to push against, overcome something big takes ALOT of energy
in the case of MC, succuss comes with the path that finds the way around it, (and yep it takes longer and needs more patience) and figuring out what works best for you, rather than what appears the short path of going over the top
there is a big connection between head and health. once you settled in your MC management plan (thoughts, lifestyle, eating plan etc) life is pretty awesome.
focus on nurturing healing eating plan, once the gut has healed and you are absorbing nutrients, the other issues will melt away (sometimes slowly)
like the cover of tex's book, we are like a rare tree. the roots have to be stabilised and able to absorb nutrients for the rest of the tree to grow and eventually blossom.
wow, you have been doing a marathon!
you use way way less energy 'going with the flow' , trying to push against, overcome something big takes ALOT of energy
in the case of MC, succuss comes with the path that finds the way around it, (and yep it takes longer and needs more patience) and figuring out what works best for you, rather than what appears the short path of going over the top
there is a big connection between head and health. once you settled in your MC management plan (thoughts, lifestyle, eating plan etc) life is pretty awesome.
focus on nurturing healing eating plan, once the gut has healed and you are absorbing nutrients, the other issues will melt away (sometimes slowly)
like the cover of tex's book, we are like a rare tree. the roots have to be stabilised and able to absorb nutrients for the rest of the tree to grow and eventually blossom.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Tony,
Excellent post. I'm sorry that you're still having issues, but I appreciate your writing such an insightful post. Your case is indeed unique. I'm another who had alternating C and D. For most of my life, I had C, and then about 15 years ago, my symptoms began to shift to alternating C and D. It didn't dawn on me that I had a serious problem until the C disappeared for a few weeks, leaving uncontrollable D, but after a while, my symptoms shifted back to alternating C and D again.
I wonder if the reason you never received a diagnosis is because you have paucicelular LC. Most GI docs and pathologists are only familiar with the two most common forms of MC, LC and CC, so I doubt that 99 % of them could diagnose paucicelular LC.
With a double DQ status, it's highly likely that you have additional food sensitivities. About a year ago, EnteroLab added another test to their offerings (Panel C). This is not an individual test like the others, but rather it rates one's level of sensitivity to a group of 11 antigenic foods, and then ranks the foods, in groups, according to which are the most inflammatory, and which are the least inflammatory, according to the submitted test sample. By doing the test this way, it's much more affordable than it would be if the foods were each tested individually. The other option would the moderator release test (MRT), combined with an exclusion diet followed by individual diet testing of the foods ranked as safe by the test results.
As you are well aware, tracking down remaining elusive food sensitivities can sometimes be a daunting task, but so far, no one has found a better way to eliminate and prevent our symptoms.
Thanks for posting,
Tex
Excellent post. I'm sorry that you're still having issues, but I appreciate your writing such an insightful post. Your case is indeed unique. I'm another who had alternating C and D. For most of my life, I had C, and then about 15 years ago, my symptoms began to shift to alternating C and D. It didn't dawn on me that I had a serious problem until the C disappeared for a few weeks, leaving uncontrollable D, but after a while, my symptoms shifted back to alternating C and D again.
I wonder if the reason you never received a diagnosis is because you have paucicelular LC. Most GI docs and pathologists are only familiar with the two most common forms of MC, LC and CC, so I doubt that 99 % of them could diagnose paucicelular LC.
With a double DQ status, it's highly likely that you have additional food sensitivities. About a year ago, EnteroLab added another test to their offerings (Panel C). This is not an individual test like the others, but rather it rates one's level of sensitivity to a group of 11 antigenic foods, and then ranks the foods, in groups, according to which are the most inflammatory, and which are the least inflammatory, according to the submitted test sample. By doing the test this way, it's much more affordable than it would be if the foods were each tested individually. The other option would the moderator release test (MRT), combined with an exclusion diet followed by individual diet testing of the foods ranked as safe by the test results.
As you are well aware, tracking down remaining elusive food sensitivities can sometimes be a daunting task, but so far, no one has found a better way to eliminate and prevent our symptoms.
Thanks for posting,
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.
Eggs 
Nuts 
and maybe dairy even though you might not notice it until it is gone. That was me anyway. I think that bacteria plays a huge roll in the state of our intestines and intestinal disease, and I pretty much adhere to SCD, but I am not low carb. I eat the starchiest veggies that are allowed, and fruits are by no means low carb 
It is possible that with the double celiac gene you didn't heal up completely, even after stopping gluten, and have developed more sensitivities. Quite the bummer, but could be why you are have those "glutened" feelings. It is amazing how much it feels the same with other food intolerances as it does with gluten!
I wish I could say SCD cures it all, but I am not there yet! I can let you know in a year, but I do feel better when I eat this way!
Hang in there!!!!
Susie
Nuts and maybe dairy even though you might not notice it until it is gone. That was me anyway. I think that bacteria plays a huge roll in the state of our intestines and intestinal disease, and I pretty much adhere to SCD, but I am not low carb. I eat the starchiest veggies that are allowed, and fruits are by no means low carb It is possible that with the double celiac gene you didn't heal up completely, even after stopping gluten, and have developed more sensitivities. Quite the bummer, but could be why you are have those "glutened" feelings. It is amazing how much it feels the same with other food intolerances as it does with gluten!
I wish I could say SCD cures it all, but I am not there yet! I can let you know in a year, but I do feel better when I eat this way!
Hang in there!!!!
Susie
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IDontGiveA
- Little Blue Penguin
- Posts: 25
- Joined: Mon Feb 15, 2010 9:41 am
- Location: Brazil
Thanks for the kind words.. its appreciated.
Yes, getting your head together can indeed be challenging, even if you dont have a chronic illness. I was not aware of the new panel at enterolabs. Sounds like a good idea, Im not sure how possible it would be to send a sample from Brazil however. Ill have to look into the MRT stuff, it maybe available here, but the enterolab test sounds like its more reliable.
I know this is out in quack land for some, but has anyone been able to reliably detect sensitivities using kineseology or 'muscle testing'? I went to a chiropractor a few years before I did the enterolab test. He found me sensitive to wheat, corn,soy, and a few other things I can't recall. I remember thinking, what the hell can I eat then? I tried the diet for a few months with no results. No wonder as I was eating spelt instead of wheat, and only did it for a month or so.
Thanks again...
Yes, getting your head together can indeed be challenging, even if you dont have a chronic illness. I was not aware of the new panel at enterolabs. Sounds like a good idea, Im not sure how possible it would be to send a sample from Brazil however. Ill have to look into the MRT stuff, it maybe available here, but the enterolab test sounds like its more reliable.
I know this is out in quack land for some, but has anyone been able to reliably detect sensitivities using kineseology or 'muscle testing'? I went to a chiropractor a few years before I did the enterolab test. He found me sensitive to wheat, corn,soy, and a few other things I can't recall. I remember thinking, what the hell can I eat then? I tried the diet for a few months with no results. No wonder as I was eating spelt instead of wheat, and only did it for a month or so.
Thanks again...
Maybe it's not as far-fetched as you think. Please read this entire thread about testing based on Bio Impedance (BIA).Tony wrote:I know this is out in quack land for some, but has anyone been able to reliably detect sensitivities using kineseology or 'muscle testing'?
If you have overnight delivery service available with either UPS or DHL, (I'm not sure about FedEx, but they might qualify, also), you shouldn't have any trouble shipping a sample to EnteroLab. An email or phone call to the lab would bring you prompt answers to your questions. We have members who have successfully shipped samples from as far away as Spain and HongKong.
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.
Hi Tony,
Thanks for your update! I was curious if your waking up in the middle of the night ever resolved? I've been waking up at 3:00 pm for the last 4 months and am doing the adrenal failure diet and herbs.
Gabes--
Thanks for your update! I was curious if your waking up in the middle of the night ever resolved? I've been waking up at 3:00 pm for the last 4 months and am doing the adrenal failure diet and herbs.
Gabes--
So true and very well said. You have a magical way of writing! Brandyyou use way way less energy 'going with the flow' , trying to push against, overcome something big takes ALOT of energy
in the case of MC, succuss comes with the path that finds the way around it, (and yep it takes longer and needs more patience) and figuring out what works best for you, rather than what appears the short path of going over the top
there is a big connection between head and health. once you settled in your MC management plan (thoughts, lifestyle, eating plan etc) life is pretty awesome.
focus on nurturing healing eating plan, once the gut has healed and you are absorbing nutrients, the other issues will melt away (sometimes slowly)
like the cover of tex's book, we are like a rare tree. the roots have to be stabilised and able to absorb nutrients for the rest of the tree to grow and eventually blossom.
_________________
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IDontGiveA
- Little Blue Penguin
- Posts: 25
- Joined: Mon Feb 15, 2010 9:41 am
- Location: Brazil
@Brandy.... I still do wake up, but its not as intense. Normally I'm able to get back to sleep, so it isn't as bad as it was. I would suggest getting your cortisol levels checked or talking to a MD or ND that is familiar with adrenal issues if you haven't already. After finally getting some tests done, it appears that its not my adrenals, but my hypothalamus gland that is not functioning properly. Im still not sure what is causing the sleep problem...
good luck..
Tony
good luck..
Tony
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hello Tony, I have not had a chance to say hello yet. I live in the northeast part of the US in New Hampshire. I enjoyed your description of how you are dealing with these issues, you certainly have focused on finding what foods are affecting you and are working on the solutions the best you can. You are well informed and on your way to finding wellness. It does take a while to find out what works for you, while there are commonalities amongst those with MC, we are all different in what works for each of us.
The topic of the endocrine issues caught my attention, as this is a fairly new topic for myself as I may be dealing with issues along those lines.
As a very quick summary about 3 years ago I was Dx'd with MC(CC) and Crohn's disease. I had 2 major surgeries for a bowel resection one for Crohns damage and another for a part of the colon that had significant issues with diverticulitis.
Just this past summer, I was diagnosed with Anklyosing Spondylitis which is an autoimmune bone condition of the spine, along with this I was diagnosed with osteoporosis and as the cause has been researched, it appears that there is probably an endocrine issue with potentially the hypothalamus and / or a condition called hidden Hashimoto’s autoimmune thyroiditis which looks like it has been affecting the production of male hormones, it's this combination that's resulted in fatigue and the development of osteoporosis in several areas. Currently testing is underway to figure out what exactly might be involved.
I certainly can understand your comment on feeling like running a marathon....it really is just that at times and certainly keep running, stay focused and you will succeed in achieving remission.
As far as the Bio-Impedance Analysis (BIA) I was more than a bit surprised at the accuracy of the diagnosis as the analysis pinpointed my major food intolerances and mentioned the spinal issues as a concern...boy was she right! Certainly take a look at the link Tex posted above. There is a lot of good information in those discussions. I discuss my experiences with a BIA session while visiting in Australia.... I wish I could have another session there.
I wish you the best and look forward to your updates, thanks for sharing your experiences.
The topic of the endocrine issues caught my attention, as this is a fairly new topic for myself as I may be dealing with issues along those lines.
As a very quick summary about 3 years ago I was Dx'd with MC(CC) and Crohn's disease. I had 2 major surgeries for a bowel resection one for Crohns damage and another for a part of the colon that had significant issues with diverticulitis.
Just this past summer, I was diagnosed with Anklyosing Spondylitis which is an autoimmune bone condition of the spine, along with this I was diagnosed with osteoporosis and as the cause has been researched, it appears that there is probably an endocrine issue with potentially the hypothalamus and / or a condition called hidden Hashimoto’s autoimmune thyroiditis which looks like it has been affecting the production of male hormones, it's this combination that's resulted in fatigue and the development of osteoporosis in several areas. Currently testing is underway to figure out what exactly might be involved.
I certainly can understand your comment on feeling like running a marathon....it really is just that at times and certainly keep running, stay focused and you will succeed in achieving remission.
As far as the Bio-Impedance Analysis (BIA) I was more than a bit surprised at the accuracy of the diagnosis as the analysis pinpointed my major food intolerances and mentioned the spinal issues as a concern...boy was she right! Certainly take a look at the link Tex posted above. There is a lot of good information in those discussions. I discuss my experiences with a BIA session while visiting in Australia.... I wish I could have another session there.
I wish you the best and look forward to your updates, thanks for sharing your experiences.
Joe