I'm new here and could use some advice from everyone here on how to calm the current flare that I'm in (I'm currently in month 3 of diarrhea). Here's the long story.....
I was diagnosed with Microscopic ulcerative colitis 5 years ago after a bout of diarrhea that wouldn't go away. My brother has ulcerative colitis (is on remicade) as does my 17 year old nephew (also on remicade). Because of that, the GIs were quick to lump me in the UC group. After my colonoscopy, the dr. only found evidence in the biopsy, hence the Micro diagnosis. However, he always told me that it was the beginning stages of UC, so I never considered it a separate disease. I couldn't stand that GI, so never went back after he loaded a bunch of UC meds on me to take. My symptoms would come and go. I eventually went to a wellness clinic, and the dr. (not a MD) that I saw, had me test through enterolab and found a big gluten sensitivity. So I went off gluten and did a lot of supplements, and things were fine. This was about 3 1/2 years ago. Last year (2012), I had a big flare up that lasted 5-6 months. Got desperate, so went to my primary doctor, who did parasite and infection tests and sent me to a new GI. New GI did a endoscopy to see if I was celiac. I wasn't. She didn't want to listen to me when I told her that gluten still was an irritant for me. The typical "food does nothing" dr. I was still gluten free. She loaded me up with UC meds, and I never took them. Why didn't I take my meds? Because I've seen my brother struggle so much with his UC and his meds. Out of the blue (after about 5-6months), the diarrhea resolved on it's on. I was feeling great until March of this year, when the diarrhea returned. I haven't changed my diet. I'm still gluten free. When the diarrhea returned in March of this year, it coincided with seasonal allergies for me (a first for me that I know of) as well as being glutened from a restaurant a few days before.
Out of desperation, I have done 2 things--I went back to the wellness clinic, and was told to do a paleo diet. I'm already gluten free, so I've been slowly going off diary and other grains. No improvement yet. He also loaded me up on supplements---gluten sensitivity pack, colostrum, psyllium (fiber-plus) powder, GI revive, and Carbo-G Enzymes. No improvement with the supplements.
I also returned to the GI. Now, she's never once mentioned I have microscopic Colitis--she also groups me in the UC group because of my family history of it. This time she prescribes Lialda 4 times a day. I take it for about a week, it does nothing. I stop. In the meantime my entire family (myself, husband and 2 kids) all get a nasty stomach bug involving diarrhea and vomiting). My kids quickly recover. My husband is slowly recovering. I haven't recovered. My follow up appointment with the GI is next week, so I started the Lialda again 3 days ago. I want to see the GI to talk about 1)the infection that we all have--is that related? and 2)why is she lumping me in the U. colitis camp?
So these entire 5 years, I just assume I have a mild form of UC because that's what I've been told by GIs. Now that I'm researching on my own, I discover this forum. So glad I did.
Any advise on posts to point me to, and how to go from here would be appreciated. I'm in central Texas, and I noticed Tex, that you are too--so any local resources would be great too. I'm going to dig out my enterolab results from 3 1/2 years ago to see what else I'm sensitive too. I'm thinking I need to redo the enterolab test again too.
new here--need advice
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Wanted to clarify--I'm having D right now--always morning and night, sometimes afternoon. Always very watery with food particles. Other symptoms include exhaustion (obviously), anemia, joint pain, and iritis flares in my eyes.
What is the connection with an anti-histamine that I'm reading about? (ignore my ignorance--since I just found this board I'm trying to decipher everything). Would it help me to start one? If so, what brand?
Another clarification--I've never taken RX meds for my diarrhea until this last month--Lialda. I've always done diet modifications and supplements. But now that is not working for me.
What is the connection with an anti-histamine that I'm reading about? (ignore my ignorance--since I just found this board I'm trying to decipher everything). Would it help me to start one? If so, what brand?
Another clarification--I've never taken RX meds for my diarrhea until this last month--Lialda. I've always done diet modifications and supplements. But now that is not working for me.
Hi Pianogirl,
You've probably seen the section for newbies so I'll try not to be too repetitive.
I'm thinking that you may have more sensitivities to gluten. Most of us here have also had to eliminate dairy, then soy, then eggs, in that order. Soy is my worst offender and will make me sick within 3-4 hours of ingesting some. I have worse reactions to soy than I do to gluten, so don't underestimate the power of a additional sensitivities. That may be what keeps your D going and why the usual strategies aren't working anymore.
I've never taken Lialda so I can't comment much there. If it's not designed to reduce inflammation then you may want to talk to your Dr. about considering a course of Entocort, a delayed release steroid that doesn't open until it gets into your intestinal tract, applying the cortico steroid right where it's most needed. Often people take Entocort 3-4 months then titrate down. The only way (as you know) to maintain good functioning though is by eliminating the foods that we have sensitivities to. So Entocort can reduce the inflammation but the long term maintenance and healing will come from altering your diet.
I take Claritin Reditabs for my seasonal allergies and I also see an increase in my LC symptoms when my seasonal allergies hit. Many people on this board have found taking Claritin or Allegra helpful in managing some of the MC symptoms. I would encourage you continue with an antihistamine.
I was looking at your supplements and I see fiber listed. I would suggest you stop the fiber right away. In fact I'm kinda dubious of all supplements during a flare. It's generally best when you are flaring to drop back to the simplest, cleanest strategies-- simple easy to digest foods-- no fiber, low fat, low sugar, no caffeine, no raw fruits or vegetables. Instead have baked or grilled chicken, beef, well cooked vegetables (carrots, squashes, green beans are often safe), rice, potatoes and broth. Of course if your previous Enterolab results say you react to any of these then adjust accordingly. Stay hydrated and keep your electrolytes up (but avoid sports drinks with their dyes, acids and sugars). Avoid NSAIDS and artificial sweetners too.
I'm sure others will chime in with more insights. I applaud you for researching your situation and knowing that what you are experiencing is not UC. For a real comprehensive look, Tex has written a book on Microscopic colitis that is available from Amazon.com. You'll find the book in the upper right hand corner of this site. It covers all things MC.
take care, welcome and feel free to ask anything.
Carol
You've probably seen the section for newbies so I'll try not to be too repetitive.
I'm thinking that you may have more sensitivities to gluten. Most of us here have also had to eliminate dairy, then soy, then eggs, in that order. Soy is my worst offender and will make me sick within 3-4 hours of ingesting some. I have worse reactions to soy than I do to gluten, so don't underestimate the power of a additional sensitivities. That may be what keeps your D going and why the usual strategies aren't working anymore.
I've never taken Lialda so I can't comment much there. If it's not designed to reduce inflammation then you may want to talk to your Dr. about considering a course of Entocort, a delayed release steroid that doesn't open until it gets into your intestinal tract, applying the cortico steroid right where it's most needed. Often people take Entocort 3-4 months then titrate down. The only way (as you know) to maintain good functioning though is by eliminating the foods that we have sensitivities to. So Entocort can reduce the inflammation but the long term maintenance and healing will come from altering your diet.
I take Claritin Reditabs for my seasonal allergies and I also see an increase in my LC symptoms when my seasonal allergies hit. Many people on this board have found taking Claritin or Allegra helpful in managing some of the MC symptoms. I would encourage you continue with an antihistamine.
I was looking at your supplements and I see fiber listed. I would suggest you stop the fiber right away. In fact I'm kinda dubious of all supplements during a flare. It's generally best when you are flaring to drop back to the simplest, cleanest strategies-- simple easy to digest foods-- no fiber, low fat, low sugar, no caffeine, no raw fruits or vegetables. Instead have baked or grilled chicken, beef, well cooked vegetables (carrots, squashes, green beans are often safe), rice, potatoes and broth. Of course if your previous Enterolab results say you react to any of these then adjust accordingly. Stay hydrated and keep your electrolytes up (but avoid sports drinks with their dyes, acids and sugars). Avoid NSAIDS and artificial sweetners too.
I'm sure others will chime in with more insights. I applaud you for researching your situation and knowing that what you are experiencing is not UC. For a real comprehensive look, Tex has written a book on Microscopic colitis that is available from Amazon.com. You'll find the book in the upper right hand corner of this site. It covers all things MC.
take care, welcome and feel free to ask anything.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Thank you Carol! I've never taken Claritin, so I will give it a try. I'm also going to be very active about going completely off dairy and soy. Eggs don't seem to be a problem for me. It's one of the breakfasts I can eat that actually calms my stomach.
I never heard that fiber is bad--I was always told that the fiber in the supplements would "bulk" up my stools and help eliminate the diarrhea. Good to know. I will go off supplements until I head.
What about probiotics? I'm on VSL#3. Any opinions on if I should keep that or discontinue that?
Also--I do homemade yogurt. I know it's a dairy product, but should I experiment with eating it or not? I did a modified SCD diet as well as gaps for a while, and both of those diets push the probiotics in homemade yogurt and kefir.
I never heard that fiber is bad--I was always told that the fiber in the supplements would "bulk" up my stools and help eliminate the diarrhea. Good to know. I will go off supplements until I head.
What about probiotics? I'm on VSL#3. Any opinions on if I should keep that or discontinue that?
Also--I do homemade yogurt. I know it's a dairy product, but should I experiment with eating it or not? I did a modified SCD diet as well as gaps for a while, and both of those diets push the probiotics in homemade yogurt and kefir.
Hi Pianogirl,
Welcome to our internet family. We consider ourselves a family because it seems that no one understands this disease unless they actually have it.
I agree with everything that Carol posted. The fact that your relapse coincided with the start of the allergy season here is pretty strong evidence that you probably have mast cell activation disorder (MCAD). You can read some background information on how I believe mast cell issues are associated with MC (and how to treat mast cell issues) at the various links listed in my post here.
While it's true that there does seem to be an association between MC and UC, we have members who have UC, who have proven by their own experiences that our dietary methods for controlling (preventing) the inflammation associated with MC, work just as well for controlling UC. Personally, I would avoid yogurt, unless your EnteroLab results showed that you definitely do not produce antibodies to casein. For most of us, probiotics do not help (in fact for many of us, many types of probiotics seem to make our symptoms worse). That said, if you are going to take a commercial probiotic, VSL#3 is probably one of the best. The biggest problem with the SCD (for MC patients) is that it allows the inclusion of casein in the diet). Most probiotics also contain dairy products (lactose that probably contains traces of casein). If you remove dairy products from the SCD, you essentially have the paleo diet.
Sometimes it takes several weeks for Lialda or any of the other mesalamine-based medications to help reduce symptoms. Unfortunately, for those of us who are sensitive to NSAIDs (and quite a few of us are), mesalamine-based medications tend to promote the production of pro-inflammatory leukotrienes, and obviously that can add to the inflammation, and cause or perpetuate D, rather than helping to control the inflammation.
Unfortunately, for those of us who experience mast cell issues in connection with our MC, Gi specialists and/or allergists who understand the connection are as scarce as hen's teeth. Consequently, most of us have to do the best we can, by taking charge of our own health. I have no idea exactly where you are located, but if you should prefer to try to consult with a medical professional who at least appears to be qualified to treat patients who have mast cell issues, we do have at least one allergist in Texas who was trained at Brigham and Women's Hospital in Boston, under the supervision of Dr. Mariana Castells, so that he should be able to understand the connection between MC and mast cell issues. Currently, Brigham and Women's Hospital is the center of the universe, as far as working knowledge about treating mast cell issues is concerned. You can see his contact information here. He won't necessarily understand MC, but he should understand how mast cells can be a problem in the digestive system.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. We consider ourselves a family because it seems that no one understands this disease unless they actually have it.
I agree with everything that Carol posted. The fact that your relapse coincided with the start of the allergy season here is pretty strong evidence that you probably have mast cell activation disorder (MCAD). You can read some background information on how I believe mast cell issues are associated with MC (and how to treat mast cell issues) at the various links listed in my post here.
While it's true that there does seem to be an association between MC and UC, we have members who have UC, who have proven by their own experiences that our dietary methods for controlling (preventing) the inflammation associated with MC, work just as well for controlling UC. Personally, I would avoid yogurt, unless your EnteroLab results showed that you definitely do not produce antibodies to casein. For most of us, probiotics do not help (in fact for many of us, many types of probiotics seem to make our symptoms worse). That said, if you are going to take a commercial probiotic, VSL#3 is probably one of the best. The biggest problem with the SCD (for MC patients) is that it allows the inclusion of casein in the diet). Most probiotics also contain dairy products (lactose that probably contains traces of casein). If you remove dairy products from the SCD, you essentially have the paleo diet.
Sometimes it takes several weeks for Lialda or any of the other mesalamine-based medications to help reduce symptoms. Unfortunately, for those of us who are sensitive to NSAIDs (and quite a few of us are), mesalamine-based medications tend to promote the production of pro-inflammatory leukotrienes, and obviously that can add to the inflammation, and cause or perpetuate D, rather than helping to control the inflammation.
Unfortunately, for those of us who experience mast cell issues in connection with our MC, Gi specialists and/or allergists who understand the connection are as scarce as hen's teeth. Consequently, most of us have to do the best we can, by taking charge of our own health. I have no idea exactly where you are located, but if you should prefer to try to consult with a medical professional who at least appears to be qualified to treat patients who have mast cell issues, we do have at least one allergist in Texas who was trained at Brigham and Women's Hospital in Boston, under the supervision of Dr. Mariana Castells, so that he should be able to understand the connection between MC and mast cell issues. Currently, Brigham and Women's Hospital is the center of the universe, as far as working knowledge about treating mast cell issues is concerned. You can see his contact information here. He won't necessarily understand MC, but he should understand how mast cells can be a problem in the digestive system.
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 Pianogirl-- or is that Dr. Pianogirl? 
My daughter is a jazz pianist, currently attending the Conservatory of Music at UMKC in Kansas City. You talented musicians have my admiration.
Fiber can be a bulking agent but when in a flare it acts more like sandpaper. I am actually on a regimen of Citrucel (only 1 teaspoon a day) under the supervision of my GI doc but that was prescribed about a year after my diagnosis when my flares were over and I settled into being C prominent. I'm with Tex on the yogurt and kefir and the probiotics. I tried probiotics and it only took once for me to see a negative reaction in the form of D. We have a few members who use them but probably more that found probiotics were not helpful. Likewise with yogurt and kefir. Right now probably isn't the time to be eating those since they are dairy and fermented. If you are having D you are probably having inflammation--especially is there is mast cell involvement-- so the best approach is to get your diet back to basics, simple and uncomplicated, and safe.
Keep us posted on your progress.
Carol
My daughter is a jazz pianist, currently attending the Conservatory of Music at UMKC in Kansas City. You talented musicians have my admiration. Fiber can be a bulking agent but when in a flare it acts more like sandpaper. I am actually on a regimen of Citrucel (only 1 teaspoon a day) under the supervision of my GI doc but that was prescribed about a year after my diagnosis when my flares were over and I settled into being C prominent. I'm with Tex on the yogurt and kefir and the probiotics. I tried probiotics and it only took once for me to see a negative reaction in the form of D. We have a few members who use them but probably more that found probiotics were not helpful. Likewise with yogurt and kefir. Right now probably isn't the time to be eating those since they are dairy and fermented. If you are having D you are probably having inflammation--especially is there is mast cell involvement-- so the best approach is to get your diet back to basics, simple and uncomplicated, and safe.
Keep us posted on your progress.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Welcome to our family Pianogirl.
Tex has written a book that you might want to buy. Just click on the image of it in the upper right hand corner of this page. Great resource.
When I am in a flare, I stop taking most of my supplements. I would definitely stop the probiotics ( made me worse), yogurt, and colostrum. Do you know whether you were tested for Dairy, soy, and Eggs with the Enterolab test? We also can get new intolerances . I know- bummer.
I am not a drug pusher, but if you are going to try any drug, the one that works best for MC is Entocort ( buesonide). Many of us have been/ are taking it. I took it for 6 months. it worked great at controlling the D while I worked on my diet. Have been off it over a year now.
During my healing time I took out gluten, dairy , and soy. What i also did was take out all fiber foods ( beans, legumes, RAW FRUITS AND VEGGIES), spicy, acid foods ( tomato, citrus), too much sugar, and caffeine. I know, it seems like a lot, but all of these foods that I call "aggravators" or "irritants" can keep you from healing because they are just too hard on the system right now. Later, you can test them back in when you have healed and feel better. I have been able to add some back in :)
Find a very simple diet you can live with for a good long time and give your system time to heal. For me that was animal proteins, rice, cooked, eggs, carrots and squash, rice cakes with almond butter, sweet potatoes, avocado, and chex cereals with almond milk. we all are slightly different in what we can tolerate, but the simpler the better.
Good luck and keep us posted
Leah
Tex has written a book that you might want to buy. Just click on the image of it in the upper right hand corner of this page. Great resource.
When I am in a flare, I stop taking most of my supplements. I would definitely stop the probiotics ( made me worse), yogurt, and colostrum. Do you know whether you were tested for Dairy, soy, and Eggs with the Enterolab test? We also can get new intolerances . I know- bummer.
I am not a drug pusher, but if you are going to try any drug, the one that works best for MC is Entocort ( buesonide). Many of us have been/ are taking it. I took it for 6 months. it worked great at controlling the D while I worked on my diet. Have been off it over a year now.
During my healing time I took out gluten, dairy , and soy. What i also did was take out all fiber foods ( beans, legumes, RAW FRUITS AND VEGGIES), spicy, acid foods ( tomato, citrus), too much sugar, and caffeine. I know, it seems like a lot, but all of these foods that I call "aggravators" or "irritants" can keep you from healing because they are just too hard on the system right now. Later, you can test them back in when you have healed and feel better. I have been able to add some back in :)
Find a very simple diet you can live with for a good long time and give your system time to heal. For me that was animal proteins, rice, cooked, eggs, carrots and squash, rice cakes with almond butter, sweet potatoes, avocado, and chex cereals with almond milk. we all are slightly different in what we can tolerate, but the simpler the better.
Good luck and keep us posted
Leah
I have been reading this thread with great interest. My question is, how long does it typically take to heal? I know it will vary between individuals, but is there some similarity depending on the length of the flare-up? I'm never sure if it's safe to start slowly adding back foods or if my reaction to them is telling me I'm not ready (I'm so fearful of starting another flare!).
Thanks!
Thanks!
Judy,
Each of us tends to have our own opinion of what remission and/or healing means. Here is my opinion:
The time to reach remission from most symptoms is typically around 4–6 months, but that time can vary greatly. A few members have achieved remission within a few days of changing their diet. On the other hand, for some of us, it takes over a year (it took me a year and a half, but I didn't have anyone to guide me, back then). I believe that Polly has also mentioned that it took her about a year and a half to reach remission, because she was one of the pioneers in MC discussion and support boards, and she helped to set up this one (over 9 years ago).
It appears that if we take Entocort in addition to avoiding all our food sensitivities, we can usually expect to reach remission within a couple of weeks (assuming that Entocort works for us). However, while the Entocort may mask the symptoms, it does not speed up the healing. In fact, research shows that corticosteroids retard healing. If the Entocort is discontinued, the patient will almost invariably relapse unless they have been following a safe diet for at least 4–6 months.
But remission from symptoms does not mean that healing has occurred. Healing occurs when the colonic mucosal cellular histology (the physical appearance under a microscope of the cells in biopsy samples taken from the mucosa of the colon) has returned to normal, and while this can occur within a year or less for children, it typically takes at least 3 to 5 years for adults, and some of us never heal completely (but that doesn't normally cause any problems).
From a practical standpoint, more than a few members here have posted that after approximately 2 years (of careful attention to diet and any other health needs), they finally feel as though they have fully recovered, and they have their life back. Over the years, I've seen that 2-year mark mentioned surprisingly often. This is not saying that it takes 2 years to reach remission — rather it's saying that it takes about 2 years to feel normal again.
At least those are my thoughts on your question.
Tex
Each of us tends to have our own opinion of what remission and/or healing means. Here is my opinion:
The time to reach remission from most symptoms is typically around 4–6 months, but that time can vary greatly. A few members have achieved remission within a few days of changing their diet. On the other hand, for some of us, it takes over a year (it took me a year and a half, but I didn't have anyone to guide me, back then). I believe that Polly has also mentioned that it took her about a year and a half to reach remission, because she was one of the pioneers in MC discussion and support boards, and she helped to set up this one (over 9 years ago).
It appears that if we take Entocort in addition to avoiding all our food sensitivities, we can usually expect to reach remission within a couple of weeks (assuming that Entocort works for us). However, while the Entocort may mask the symptoms, it does not speed up the healing. In fact, research shows that corticosteroids retard healing. If the Entocort is discontinued, the patient will almost invariably relapse unless they have been following a safe diet for at least 4–6 months.
But remission from symptoms does not mean that healing has occurred. Healing occurs when the colonic mucosal cellular histology (the physical appearance under a microscope of the cells in biopsy samples taken from the mucosa of the colon) has returned to normal, and while this can occur within a year or less for children, it typically takes at least 3 to 5 years for adults, and some of us never heal completely (but that doesn't normally cause any problems).
From a practical standpoint, more than a few members here have posted that after approximately 2 years (of careful attention to diet and any other health needs), they finally feel as though they have fully recovered, and they have their life back. Over the years, I've seen that 2-year mark mentioned surprisingly often. This is not saying that it takes 2 years to reach remission — rather it's saying that it takes about 2 years to feel normal again.
At least those are my thoughts on your question.
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.
Tex,
After I was diagnosed in 2007, it took a couple of years plus Entocort to get to my new norm. Through the years since then, I’ve had a number of flares, which somehow seemed to eventually resolve themselves. This past summer, I had one that made me start looking at making some restrictions to my diet. Everyone had been talking about gluten and when I read up on it I saw the connection to inflammation issues. So I went off of gluten and within 3 days I was having normans! So why or why did I go back to eating gluten?! Within 6 months I’m here on the downside of another flare that didn’t respond so quickly this time, which is why I strongly suspect gluten as at least one of my problems.
So what you are saying now makes so much sense to me … that even if I am in remission, I am not healed. And I sure am resisting this realization. This is very hard for me. I am a wheat lover of epic proportions.
My next task is to evaluate my meds/supplements and try to eliminate all that I can for a while. The ones I won’t be able to do without are Zetia (cholesterol), Metformin (pre-diabetes, although I have just requested the extended release in the hopes it will be kinder to my condition), Lisinopril (bp), Pramipexole (RLS). If you see any huge red flags in these, please let me know.
And I’m also going to talk to my husband about getting the lab work done to get a definitive answer on food sensitivities.
Thank you for spending so much time on me.
After I was diagnosed in 2007, it took a couple of years plus Entocort to get to my new norm. Through the years since then, I’ve had a number of flares, which somehow seemed to eventually resolve themselves. This past summer, I had one that made me start looking at making some restrictions to my diet. Everyone had been talking about gluten and when I read up on it I saw the connection to inflammation issues. So I went off of gluten and within 3 days I was having normans! So why or why did I go back to eating gluten?! Within 6 months I’m here on the downside of another flare that didn’t respond so quickly this time, which is why I strongly suspect gluten as at least one of my problems.
So what you are saying now makes so much sense to me … that even if I am in remission, I am not healed. And I sure am resisting this realization. This is very hard for me. I am a wheat lover of epic proportions.
My next task is to evaluate my meds/supplements and try to eliminate all that I can for a while. The ones I won’t be able to do without are Zetia (cholesterol), Metformin (pre-diabetes, although I have just requested the extended release in the hopes it will be kinder to my condition), Lisinopril (bp), Pramipexole (RLS). If you see any huge red flags in these, please let me know.
And I’m also going to talk to my husband about getting the lab work done to get a definitive answer on food sensitivities.
Thank you for spending so much time on me.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Judy,
Your reply to tex is kinda on the topic I was going to mention.
We may get the MC calmed, but inflammation and other health issues can affect wellness and make us more sensitive to our triggers. Histamine issues, thyroid issues, dental issues, hormone issues, methylation issues are very common amongst the group. Wellness and final healing can be hindered by the influence of these types of issues, the journey for most here involves solving quite a few puzzles
As we age, and the longer there has been chronic inflammation, the harder and longer it takes to heal.
It's a tough gig, 'giving up' favourite foods and meals. One thing with multiple intolerences in MC world is that we have to sort of wipe the slate clean and start again.... Change our beliefs and habits of the past 30-40-50 years and do things differently...
Please feel some assurance that all the changes, and effort are worth it!!! 2 years may seem like a long time at the moment, but in the scheme of getting your life back it is very short period of time...
Have you read the posts in the success stories area?? This will give you, and your husband a good indicator of what's involved, and the benefit of embracing the changes.
Happy healing
Hugs
Your reply to tex is kinda on the topic I was going to mention.
We may get the MC calmed, but inflammation and other health issues can affect wellness and make us more sensitive to our triggers. Histamine issues, thyroid issues, dental issues, hormone issues, methylation issues are very common amongst the group. Wellness and final healing can be hindered by the influence of these types of issues, the journey for most here involves solving quite a few puzzles
As we age, and the longer there has been chronic inflammation, the harder and longer it takes to heal.
It's a tough gig, 'giving up' favourite foods and meals. One thing with multiple intolerences in MC world is that we have to sort of wipe the slate clean and start again.... Change our beliefs and habits of the past 30-40-50 years and do things differently...
Please feel some assurance that all the changes, and effort are worth it!!! 2 years may seem like a long time at the moment, but in the scheme of getting your life back it is very short period of time...
Have you read the posts in the success stories area?? This will give you, and your husband a good indicator of what's involved, and the benefit of embracing the changes.
Happy healing
Hugs
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thank you so much, Gabes. Yes, I have read some of the testimonies of success stories, and was encouraged by them and everyone here trying to help me. I'm so grateful for this whole site as it has been very validating to say the least.
I'm going to explore having the A2/B2 test done, just because I had an Aunt suffered from Crohn's and that panel includes that testing. Would welcome your or Tex's thoughts on that.
Judy
I'm going to explore having the A2/B2 test done, just because I had an Aunt suffered from Crohn's and that panel includes that testing. Would welcome your or Tex's thoughts on that.
Judy
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
At the time of Dx i could not afford the entorlab testing, I had already been GF/LF, low caesin, low yeast for 10 years prior to DX so went with elimination diet protocol, kept a journal, avoided items that affected majority of the people here (greens, salad, raw fruit) and within 6 months knew all my major and majority of my minor triggers
My mother had/has crohns (now has stoma bag) both my sister and I have Celiac genes. I only had the celiac gene test done earlier this year (4 years or so post Dx) the test was done at no cost to me. I have known since 1999 that gluten causes inflammation and digestion issues, I didnt need a test to prove it.
Interestingly after having the stoma installed, the GI specialist told mum she could eat anything she wanted. She started have gluten, dairy etc again. Within 2 years she was lethargic, joint pain, foggy brain etc. I told her to stop them for 3 months and see if she felt better, within 4 weeks she felt great! stopped taking meds for the pain and had vast increase in energy. heartburn went away and she stopped the meds for that.
My mother had/has crohns (now has stoma bag) both my sister and I have Celiac genes. I only had the celiac gene test done earlier this year (4 years or so post Dx) the test was done at no cost to me. I have known since 1999 that gluten causes inflammation and digestion issues, I didnt need a test to prove it.
Interestingly after having the stoma installed, the GI specialist told mum she could eat anything she wanted. She started have gluten, dairy etc again. Within 2 years she was lethargic, joint pain, foggy brain etc. I told her to stop them for 3 months and see if she felt better, within 4 weeks she felt great! stopped taking meds for the pain and had vast increase in energy. heartburn went away and she stopped the meds for that.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Judy,
Most people in the general population have a magnesium deficiency. We (with MC) are even more likely to have a magnesium deficiency. If you were diagnosed 7 years ago, unless you are taking a substantial magnesium supplement on a daily basis, then it is virtually guaranteed that you are short on magnesium.
Testing does no good, because the magnesium tests that most doctors use are useless, because they use a blood test. Magnesium is such an important electrolyte that the body automatically draws magnesium from the cells of the body to keep blood magnesium levels in a tightly-regulated range. That's what makes the blood test worthless, because it will always show a normal result until/unless cellular magnesium levels are so low as to impose a life-threatening risk. Apparently no one bothers to point that out to doctors in their training, so they continue to make that potentially dangerous mistake. The correct test for magnesium is a tissue test, (to test magnesium reserves on a cellular level). But so far, I haven't encountered any doctors who use a tissue test.
So that's why most of us supplement our magnesium intake.
The point of all that background information is related to restless leg syndrome. It is most often caused by a magnesium deficiency (but naturally the doctors are unaware of this, so they prescribe a drug to treat the condition. Leg and food cramps are also usually due to a magnesium deficiency, though a deficiency of other electrolytes such as sodium or calcium is sometimes responsible. Many/most of us cannot take an oral magnesium supplement adequate for our needs without causing D (magnesium is a laxative in substantial doses), so we use a topical magnesium spray, or a foot soak using Epsom salts in order to get enough magnesium into our body to meet our needs.
I have no idea if Pramipexole can trigger MC, but if you supplement with enough magnesium, you should be able to do without the Pramipexole.
If I've already mentioned this to you, and/or you're already aware of the magnesium issue, I apologize. It's hard to keep track of what I've posted to whom, as new members continue to join regularly.
You're most welcome,
Tex
Most people in the general population have a magnesium deficiency. We (with MC) are even more likely to have a magnesium deficiency. If you were diagnosed 7 years ago, unless you are taking a substantial magnesium supplement on a daily basis, then it is virtually guaranteed that you are short on magnesium.
Testing does no good, because the magnesium tests that most doctors use are useless, because they use a blood test. Magnesium is such an important electrolyte that the body automatically draws magnesium from the cells of the body to keep blood magnesium levels in a tightly-regulated range. That's what makes the blood test worthless, because it will always show a normal result until/unless cellular magnesium levels are so low as to impose a life-threatening risk. Apparently no one bothers to point that out to doctors in their training, so they continue to make that potentially dangerous mistake. The correct test for magnesium is a tissue test, (to test magnesium reserves on a cellular level). But so far, I haven't encountered any doctors who use a tissue test.
So that's why most of us supplement our magnesium intake.
The point of all that background information is related to restless leg syndrome. It is most often caused by a magnesium deficiency (but naturally the doctors are unaware of this, so they prescribe a drug to treat the condition. Leg and food cramps are also usually due to a magnesium deficiency, though a deficiency of other electrolytes such as sodium or calcium is sometimes responsible. Many/most of us cannot take an oral magnesium supplement adequate for our needs without causing D (magnesium is a laxative in substantial doses), so we use a topical magnesium spray, or a foot soak using Epsom salts in order to get enough magnesium into our body to meet our needs.
I have no idea if Pramipexole can trigger MC, but if you supplement with enough magnesium, you should be able to do without the Pramipexole.
If I've already mentioned this to you, and/or you're already aware of the magnesium issue, I apologize. It's hard to keep track of what I've posted to whom, as new members continue to join regularly.
You're most welcome,
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.