I'm new to this forum and honestly about an inch away from losing my mind. Truth be told, I guess I no longer know whether I actually have MC, but was "diagnosed" with it about 10 weeks ago. Looking for some feedback from someone besides the PA they put me with at the gastroenterologist.
I've had serious tummy issues my whole life. I am 27 now, but remember going to see a gastro at something like 5 years old. Ive always had a very sensitive stomach that was clearly made much worse by stress of any kind. Ive had rotating food sensitivities and even allergies that seemed to come and go. There have been times in my life where Ive felt more or less "normal" digestively, and then times where I eliminate food after food and find no relief. I've tried for years to figure out what my problem is and have worked with a naturopathic dr on both the stomach issues and the anxiety. Around 16-18 I started having terrible joint pain and fatigue. I get tons of rashes all over my body that seem to come and go rapidly. I've even been diagnosed with vaso vagal syncope due to my tendency to faint (or nearly faint) for no apparent reason. I've lived the entirely of my 20s feeling tired and lethargic and achey all the time. About 2 years ago I gave up dairy entirely. It has always seemed to be something that had the potential to bother me when things were at the worst, so I did a lot of research and learned how to actually climate it completely from my diet. I felt pretty great for a little while, but within 6 months or so I noticed my symptoms all coming back. It was so frustrating that I finally decided to really push my primary care doctor to send me to some specialist again and figure out what was going on. After several months of bouncing around, I had a HIDA scan for gallbladder function and was diagnosed with biliary dyskinesia (a GB that doesn't properly pump out bile when it should). They took out my GB last July and were so sure that had been my lifelong problem. I did feel a little better for a month or so, but by November it was so bad again that I decided to try some food sensitivity testing. My PCP had me to the US Biotek IgG antibody blood test. Dairy and gluten didn't even show up on it. It showed a high sensitivity to eggs and a low sensitivity to spelt, coffee beans, sesame seeds, cranberries, peanuts and sugar. The dietician I saw in conjunction with that had me start an elimination diet of all of those things plus gluten and dairy. Again, I felt pretty great for a month or so, but before I could even start adding things back in my symptoms started coming back. So in February, after living on this elimination diet for 4 months, losing 20 lbs (I was only 125 to begin with), my dr sent me to a gastro. I ended up with a PA at the office. She sent me for a colonoscopy, which was normal. Then when I went in for the follow up and told me that the biopsies had come back as Microcolitis. I found this website and the MC Foundation website, and as scary as some of it is, I was elated. For the first time in my life I finally had an answer. A reason why I always felt so crappy. She put me on Entocort for 8 weeks to start and said that I may need up to another 6 months. She also said not to expect to feel better right away.
Well about a week into the Entocort I had a horribly stressful work situation come up and found out I needed to move my entire business within 5 weeks. So for those 5 weeks I was crazy stressed and really didn't feel any better at all. Around week 6 of the meds and right toward the end of this super stressful time, I went in to see the gastro to see how it was going. I told her I wasn't feeling a difference yet and she said that I should have been completely better within a week and that maybe we should start treating me for IBS instead. I asked why we would do that considering my MC results and she said that my results were actually inconclusive because the inflammation didn't seem like either of the main types of MC and mimicked inflammation as is seen with "infectious etiology." I've been tested for every bacterial infection imaginable, and obviously my symptoms are not acute, so I was heartbroken. Here I thought I finally had an answer and now I guess I don't? I really don't know what the heck to think.
Meanwhile I started seeing a Naturopathic Dr again and she did a Genova stool panel. That showed a massive amount of the inflammation marker "fecal secretory IgA." Which she said should have been low considering that i'd been on steroids for several weeks at that point. It also showed some serious flora imbalances in my gut. She is having me start VSL (super strong probiotic).
This past Monday I finished my entocort. I felt like the final week (which was way less stressful then the first 6 or so weeks) I started feeling a bit better. 48 hours after finishing the entocort I apparently went through withdrawals. Horrible stomach pain, constipation followed by awful diarrhea, dizziness, headache, blurred vision, extreme fatigue and muscle weakness and everything hurt, My skin felt like it was crawling and it hurt even to have my clothing touch it. So now I'm back on the entocort so that I can step down from it but the gastro thinks I need to take xiphaxin and that these withdrawal symptoms sound like a bacterial infection. I feel like I'm losing my mind. All of this MUST be connected and she refuses to see it that way. Now I have no idea if I have MC or not. I fit the descriptions on the foundation website to a T, right down to the personality types that most often seem to be affected. I'm sorry this is such a ridiculously long post, but I am in desperate need of some feedback. The more stressed I get about all of it the worse my symptoms get and I just want to feel better. Thanks so much for listening!!
Completely Lost- Do I have MC?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Chrys,
Welcome to our Internet family. No wonder you feel lost — your doctors are all lost.
Do you have a copy of your pathology report? It sounds as though you probably have mastocytic enterocolits and I'll bet a gluten-free cookie that your gastroenterologist didn't even order a tryptase stain for the biopsy samples and ask the pathologist to rule out mastocytic enterocolitis (ME). If you have either ME or mast cell activation disorder (MCAD), you should find the short articles at the following links to be helpful. They provide some basic information to get you started on understanding these issues (if you have any of these issues). But please note that these articles are primarily focused on MCAD, not ME (though the same types of treatments may be used).
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Please be aware that there is only one dietitian in this country (to the best of my knowledge) who understands this disease, because no one truly understands this disease unless they have it. The individual I am referring to is a member of this board, but since she has been able to control her symptoms, she no longer posts and she began a new career as a counselor, so she no longer works as a dietitian.
IOW, we have to design our own diet and recovery program if we want to get our health back because every "diet" promoted by the "experts" has 1 or more faults that prevents remission from MC. For example, the main problem with your naturopath's recommendation is the probiotic. We have known for a decade or more that probiotics are counterproductive for most MC patients. All that time, the GI docs recommended probiotics. But finally, last December, the American Gastroenterological Association Institute published new guidelines for the medical management of microscopic colitis, and lo and behold, they finally specifically recommend against the use of probiotics for treating MC. Hallelujah! They are slowly learning.
Fecal Iga antibodies is the key to reliably and accurately discovering our food sensitivities. Those antibodies are found in the gut (and in stool), not in the blood. The only lab that offers accurate and reliable stool tests for the detection of food sensitivities is EnteroLab, in Dallas, Tex. EnteroLab was founded by a gastroenterologist who became a researcher after he developed MC himself. It's the lab that most of us use for determining our food sensitivities.
Most GI specialists are so confused that they tend to test patients excessively, but when they don't know what they're doing, they don't use the correct tests and they don't reach the correct conclusions.
Didn't your doctor advise you that you can't just stop taking budesonide cold turkey? You have to taper the dose in order to prevent possibly severe (and sometimes dangerous) side effects, and to prevent an almost guaranteed relapse of symptoms.
You're not losing your mind — your doctors are abusing you either because of ignorance or apathy. I sincerely hope that we can help you to get on the right track to get your health back.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. No wonder you feel lost — your doctors are all lost.
Do you have a copy of your pathology report? It sounds as though you probably have mastocytic enterocolits and I'll bet a gluten-free cookie that your gastroenterologist didn't even order a tryptase stain for the biopsy samples and ask the pathologist to rule out mastocytic enterocolitis (ME). If you have either ME or mast cell activation disorder (MCAD), you should find the short articles at the following links to be helpful. They provide some basic information to get you started on understanding these issues (if you have any of these issues). But please note that these articles are primarily focused on MCAD, not ME (though the same types of treatments may be used).
What are mast cells?
How are mast cells associated with microscopic colitis?
How do I know if mast cells are causing problems for me?
How are mast cell issues treated?
Please be aware that there is only one dietitian in this country (to the best of my knowledge) who understands this disease, because no one truly understands this disease unless they have it. The individual I am referring to is a member of this board, but since she has been able to control her symptoms, she no longer posts and she began a new career as a counselor, so she no longer works as a dietitian.
IOW, we have to design our own diet and recovery program if we want to get our health back because every "diet" promoted by the "experts" has 1 or more faults that prevents remission from MC. For example, the main problem with your naturopath's recommendation is the probiotic. We have known for a decade or more that probiotics are counterproductive for most MC patients. All that time, the GI docs recommended probiotics. But finally, last December, the American Gastroenterological Association Institute published new guidelines for the medical management of microscopic colitis, and lo and behold, they finally specifically recommend against the use of probiotics for treating MC. Hallelujah! They are slowly learning.
Fecal Iga antibodies is the key to reliably and accurately discovering our food sensitivities. Those antibodies are found in the gut (and in stool), not in the blood. The only lab that offers accurate and reliable stool tests for the detection of food sensitivities is EnteroLab, in Dallas, Tex. EnteroLab was founded by a gastroenterologist who became a researcher after he developed MC himself. It's the lab that most of us use for determining our food sensitivities.
Most GI specialists are so confused that they tend to test patients excessively, but when they don't know what they're doing, they don't use the correct tests and they don't reach the correct conclusions.
Didn't your doctor advise you that you can't just stop taking budesonide cold turkey? You have to taper the dose in order to prevent possibly severe (and sometimes dangerous) side effects, and to prevent an almost guaranteed relapse of symptoms.
You're not losing your mind — your doctors are abusing you either because of ignorance or apathy. I sincerely hope that we can help you to get on the right track to get your health back.
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.
Hi Chrys,
Just want to welcome you here, and the more you talk the better everyone can chime in and try to get you on a track you can live with
Firstly....gotta figure out the stress thing...its disrupting you something fierce and will continue to keep the gut in constant turmoil. I know it isn't an easy task but one that needs addressing as soon as possible.
Next...MC seems to come in many styles, shapes and forms for many of us, we are all different but we all have MC of some kind.
Take a deep breath and keep reading on this forum, the Success Stories, the Sticky Posts....and ask plenty of questions
Cheers
Erica
Just want to welcome you here, and the more you talk the better everyone can chime in and try to get you on a track you can live with
Firstly....gotta figure out the stress thing...its disrupting you something fierce and will continue to keep the gut in constant turmoil. I know it isn't an easy task but one that needs addressing as soon as possible.
Next...MC seems to come in many styles, shapes and forms for many of us, we are all different but we all have MC of some kind.
Take a deep breath and keep reading on this forum, the Success Stories, the Sticky Posts....and ask plenty of questions
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
I want to make you feel better by telling you that doctors are clueless. Family doctors have never heard of MS. Gastro docs don't know how to treat it. Prescribe Entocort for 8 weeks and then think we will all be fine. Mine told me no dairy or gluten ever again but eat anything else I want. If I had done that, I would have ended up back in ICU where I met that doctor. So I run the show myself with the help of the wonderful people on this website and Tex's great book available here. GF, DF, no fruits or veg, no seasonings, no alcohol, no probiotics, only a very few meats, white potatoes and carrots. And a few other things I know I can tolerate from trial and error testing in the past 10 months. I've stayed on Entocort most of the 10 months, prescribed by my family doctor. I am avoiding my gastro doc at this point. I know what I have, I know what the biopsy showed. And I was deathly ill when they found out what was wrong so I will not get well overnight. But with time and a rigid diet I will get better. I am fortunate that I am retired so I can control stress. Antihistimines every day and my antidepressants help that too. But I have to keep my life low-key. If not, I will be sick sick sick. I retired 2 years early because I could no longer work. I am so glad I did. That was before being diagnosed. Having MC sucks but we can find comfort in each other. The people on this site are WONDERFUL!!!! They answer every nosy and stupid and silly question as we've all asked the same questions before. I never feel embarrassed by asking anything. Welcome to this site and hang in there!!!!!!! But diet and your medication (Entocort) is the key for a long long time.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
welcome to the group..Horrible stomach pain, constipation followed by awful diarrhea, dizziness, headache, blurred vision, extreme fatigue and muscle weakness and everything hurt, My skin felt like it was crawling and it hurt even to have my clothing touch it. So now I'm back on the entocort so that I can step down from it but the gastro thinks I need to take xiphaxin and that these withdrawal symptoms sound like a bacterial infection. I feel like I'm losing my mind. All of this MUST be connected and she refuses to see it that way. Now I have no idea if I have MC or not.
to expand on the replies above, whether the doctor calls it MC, IBS, or even calls it 'Chrys syndrome' - there is inflammation, your digestion is struggling (stomach pain, constipation and diarrhea) and your body is reacting to the inflammation ( the rest of the symptoms)
regardless of what you call it, the root causes, and the path to fixing it is the same!
eating plan - minimising food triggers, following the right low inflammation gut healing eating plan that suits you
medication - using medication to help you while you sort out the eating plan and lifestyle stuff
lifestyle - stress can be one of your worst triggers, some of us have to take steps make changes to minimise stress to a level that our bodies can handle
making time for meditation / guided relaxation. having calm time to optimise good rest and sleep
external influences - in line with the mast cell/histamine issue that Tex mentioned, there are a multitude of things that will cause inflammation and put stress on our bodies
essential nutrients - Vit D3 and magnesium are starting points... quite a few of your symptoms are linked to Vit D3 and magnesium deficiencies...
The gut flora issues identified in your stool panel - these will resolve themselves over time if you follow the plan i have outlined above...
I am another that had digestion issues (and various other health issues) since birth. I have had multiple bowel surgeries. When my body was at its worse I had multiple chronic auto immune issues so badly I could barely get out of bed, and did not work for over 9 months.
There is lots on this site to process and digest (pun intended) take your time to do some reading and see how it applies to you.....
hope this helps alleviate some of your unsettlement..
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama