Hi Everyone,
Well..... I had my last follow up with my Dr. for perhaps the next 3-4 months. My BM's and their frequency do not seem to so life debilitating that I need to be on any med, BUT here is where I need the help, the BM's I do have are pretty much all WD so I am looking for advice as to which foods I should eat and for how long do I eat them??
Here are the foods that I have rotated around for the last week
turkey
chicken
white rice
olives
corn tortilla chips
plain potato chips
canned cranberry -only eat a little
dried cranberry pieces - only eat a little
mashed canned peaches - only eat a little
homemade strawberry and sugar jam - no pectin
homemade bread - no gluten, soy egg or dairy
Rice Chex
Gluten Free King Arthur pancake mix - I use pumpkin as my egg replacer (but I could use something else too) and coconut milk as my liquid.
Coconut milk
Water
Red Rose Tea
Can I keep eating these items, will I start to see any changes with my gut, or do I need to change anything in this line up and if I do what parameters am I looking for to know if I am getting better or if something is still not agreeing with me?
Dr. said that if I truly do not start to see more improvement in the next 3-4 months then he would really like to send off a stool sample for a more drilled down reason (he wants to use Genova, I told him that I am hearing pretty great things about Enterolab). Maybe he's worried about cost for me...Idk....I'm willing to save up for the Enterolab if it seems the most feasible for me. He also said OTC Gluthione?? sp could possibly help during this time to help as a healing aid, do I try this, and what can or does it do?
At this point I don't really know if what I have been doing is working, it kinda seems to be with a bit more predicable BM patterns and less frequency, but beyond that it's appearance hasn't changed.
Thanks
Erica
Need Input that I'm not going to get from Dr.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Erica,
This is just my opinion, but the marker that I would look for to signal an improvement would be an end to the watery D. IMO that's the strongest signal that the inflammation is diminishing. D that's not watery means that you may still have a lot of healing left to accomplish, but WD means fully active MC.
If I were in your shoes and I couldn't detect any improvement after 3 or 4 weeks, I would probably cut the following items out of my diet:
chicken, olives, cranberries, homemade strawberry and sugar jam
I'm not familiar with glutathione (an antioxidant), but I would be surprised if it were helpful for treating MC. Some members here have tried L-glutamine. Weightlifters use it to enhance healing of smooth muscle tissue. The theory is that since the intestines contain smooth muscle tissue, L-glutamine might be useful for helping to heal the damage to the intestines caused by MC. These are 2 completely different types of damage though, so I'm not sure if the theory is applicable. 1 or 2 members have reported that they are convinced that it helped, while most others either couldn't detect any improvement, or weren't sure one way or the other. It's possible that it might help in the later stages of healing (and that was the case for those who reported that it was helpful), but early on, it doesn't seem to provide any benefits in most cases.
Reduced frequency is a good sign, but transforming from WD (secretory diarrhea) to ordinary D (osmotic diarrhea) is IMO the surest sign of improvement. Remember that this is just my opinion.
Tex
This is just my opinion, but the marker that I would look for to signal an improvement would be an end to the watery D. IMO that's the strongest signal that the inflammation is diminishing. D that's not watery means that you may still have a lot of healing left to accomplish, but WD means fully active MC.
If your doctor orders the tests from EnteroLab there is a much better chance that your insurance might pay for it. If you want to find out in advance, you could call EnteroLab to get the insurance billing codes (or whatever they call them) for the tests, and then call your insurance company to ask if they will pay (if your doctor orders the tests). A few insurance companies will reimburse patients for the EnteroLab tests even if their doctor does not order the tests, but that is not very common.Erica wrote:Maybe he's worried about cost for me
If I were in your shoes and I couldn't detect any improvement after 3 or 4 weeks, I would probably cut the following items out of my diet:
chicken, olives, cranberries, homemade strawberry and sugar jam
I'm not familiar with glutathione (an antioxidant), but I would be surprised if it were helpful for treating MC. Some members here have tried L-glutamine. Weightlifters use it to enhance healing of smooth muscle tissue. The theory is that since the intestines contain smooth muscle tissue, L-glutamine might be useful for helping to heal the damage to the intestines caused by MC. These are 2 completely different types of damage though, so I'm not sure if the theory is applicable. 1 or 2 members have reported that they are convinced that it helped, while most others either couldn't detect any improvement, or weren't sure one way or the other. It's possible that it might help in the later stages of healing (and that was the case for those who reported that it was helpful), but early on, it doesn't seem to provide any benefits in most cases.
Reduced frequency is a good sign, but transforming from WD (secretory diarrhea) to ordinary D (osmotic diarrhea) is IMO the surest sign of improvement. Remember that this is just my opinion.
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.
Yes, it seems that most of us can eat potato chips, provided that they're fried in an oil that's safe for us. I have to limit my intake though, because they tend to be so greasy.Terry wrote:Tex
Can some of us eat potato chips? I tried A few but cant to hard for my system to digest.
One thing I also look for in my canned peaches is artificial sweeteners some of them contain lactose.
Terry
And you're quite correct — virtually none of us can tolerate artificial sweeteners, and very few of us can tolerate lactose.
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.
Thanks Tex,
This healing thing is all on my shoulders now (pretty heavy at the moment). Taking each day as it comes now. I realize I did mean to say glutamine just couldn't recall it properly at the time.
I'm feeling as if I wont be going far from home this Summer, I've already turned down a camping trip with my son an his family not knowing how my future needs will arise, as they don't know how to include me when it comes to food. I'm sure if I gave them things I can eat it might be ok but even at this point I don't even know if certain things are working ok. We would also be out in the middle of no where 4wheeling bathroom stops may be interesting at that point. Just accepting that at this point in my life I have to let the MC do whatever it is going to do is very frustrating, because I am not going to get any med help from my Dr. plain an simple. Perhaps after this 3-4 month stint if I can't seem to get the WD to not be secretory and more osmotic an we do Enterolab that may be a turning point for the Dr. that I may need more help in the healing dept. I am hoping I can turn this around on my own before then, it just saddens me that a person has to hit Rock Bottom before glimmers of hope begin to emerge. I don't even know if I am at Rock Bottom yet
Sure makes me feel I am though.
It doesn't help that this allergy season has hit me with what started out as runny nose and itchy eyes then turned into an allergy cold making me quite tired and now I am at the coughing stage. Ya kinda force feed yourself at this point because nothing tastes good and I didn't prepare any broths ahead of time, so I am just SOL this go around. I'm taking my Allegra but this season has been super pollinated around the Pacific NW. I even take a Benedryl at night.
The peaches I mentioned are DOLE and are packed in 100% fruit juices. I don't eat them very often either. I suspect I should just eat the DOLE pears instead since there doesn't seem to be any reaction to that fruit. The potato chips are Wavy Lays and the package says sunflower, corn or canola oil, so for now I will watch it, I don't eat a lot of those either. I mainly eat Turkey and rice and Rice Chex.
Thanks for listening, I'm just another MC'er who just wants to start feeling normal again.
Erica
This healing thing is all on my shoulders now (pretty heavy at the moment). Taking each day as it comes now. I realize I did mean to say glutamine just couldn't recall it properly at the time.
I'm feeling as if I wont be going far from home this Summer, I've already turned down a camping trip with my son an his family not knowing how my future needs will arise, as they don't know how to include me when it comes to food. I'm sure if I gave them things I can eat it might be ok but even at this point I don't even know if certain things are working ok. We would also be out in the middle of no where 4wheeling bathroom stops may be interesting at that point. Just accepting that at this point in my life I have to let the MC do whatever it is going to do is very frustrating, because I am not going to get any med help from my Dr. plain an simple. Perhaps after this 3-4 month stint if I can't seem to get the WD to not be secretory and more osmotic an we do Enterolab that may be a turning point for the Dr. that I may need more help in the healing dept. I am hoping I can turn this around on my own before then, it just saddens me that a person has to hit Rock Bottom before glimmers of hope begin to emerge. I don't even know if I am at Rock Bottom yet
Sure makes me feel I am though.It doesn't help that this allergy season has hit me with what started out as runny nose and itchy eyes then turned into an allergy cold making me quite tired and now I am at the coughing stage. Ya kinda force feed yourself at this point because nothing tastes good and I didn't prepare any broths ahead of time, so I am just SOL this go around. I'm taking my Allegra but this season has been super pollinated around the Pacific NW. I even take a Benedryl at night.
The peaches I mentioned are DOLE and are packed in 100% fruit juices. I don't eat them very often either. I suspect I should just eat the DOLE pears instead since there doesn't seem to be any reaction to that fruit. The potato chips are Wavy Lays and the package says sunflower, corn or canola oil, so for now I will watch it, I don't eat a lot of those either. I mainly eat Turkey and rice and Rice Chex.
Thanks for listening, I'm just another MC'er who just wants to start feeling normal again.
Erica
I've pointed out many times on this board that back when I had been really sick for a year or so and I didn't know anyone else in the world who had symptoms similar to mine, and then it became obvious that my GI specialist wasn't going to be able to help me, because all my test results were normalI am hoping I can turn this around on my own before then, it just saddens me that a person has to hit Rock Bottom before glimmers of hope begin to emerge. I don't even know if I am at Rock Bottom yet Sad Sure makes me feel I am though.
. . . that was the loneliest, most hopeless period of my life.I've had emergency abdominal surgery twice, once when I was rapidly bleeding to death, but I didn't feel hopeless then — in fact I don't recall that it ever even entered my mind. Obviously there's something about MC that makes it uniquely depressing and isolating. It messes with our mind, big time.
But after we are able to get our life back, it's a very different world. Proving to ourself that we are actually capable of controlling this disease by means of our own ingenuity and perseverance, is both empowering and very gratifying. It's a personal accomplishment that's probably on a par with qualifying for the olympics in many cases.
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.
Thanks Tex,
You sure have dealt with some pretty harsh health issues. You are right though, this MC thing is the most loneliest feeling on the planet. I guess I overestimate the family in my life. You know the saying do unto others as you would have them do unto you....well here I've been a caregiver to my family all their lives but you'd think I had turned into something they can't recognize or don't know or want to take care of. Maybe they are unsure how to help me, but you'd think they would offer at least. I've bent over backwards to make sure that my husband and children have gotten what it took to heal, help or sooth. I've learned what they may need in order to get thru kidney stones, pre-diabetes, tonsillectomies... you name it.
I'm a team player, but for the most part I have competed on my own I wasn't much into team sports in High School, I showed my horse all during that time, rode countless hours out in the field and arena and won enough times that there were no more personal best to be had in my age bracket. I completely understand about doing something alone and for myself. It just seems and feels wrong to have to do something like this with that alone feeling. I guess I best buck up and do this for myself and if it means backing off on the kinds of energy that I was giving my family and sending it to myself this is the change that will need to happen for me to over come this.
I hope everyone bears with me....I can tell I'm being rather needy at the moment. I'm just airing some thoughts and looking for some ideas and answers along the way.
Tex, I need to start looking at this as preparing for another horse show, it takes lots of time, practice and patience to get it to all come together. Wish I could hug you right now
Erica
You sure have dealt with some pretty harsh health issues. You are right though, this MC thing is the most loneliest feeling on the planet. I guess I overestimate the family in my life. You know the saying do unto others as you would have them do unto you....well here I've been a caregiver to my family all their lives but you'd think I had turned into something they can't recognize or don't know or want to take care of. Maybe they are unsure how to help me, but you'd think they would offer at least. I've bent over backwards to make sure that my husband and children have gotten what it took to heal, help or sooth. I've learned what they may need in order to get thru kidney stones, pre-diabetes, tonsillectomies... you name it.
I'm a team player, but for the most part I have competed on my own I wasn't much into team sports in High School, I showed my horse all during that time, rode countless hours out in the field and arena and won enough times that there were no more personal best to be had in my age bracket. I completely understand about doing something alone and for myself. It just seems and feels wrong to have to do something like this with that alone feeling. I guess I best buck up and do this for myself and if it means backing off on the kinds of energy that I was giving my family and sending it to myself this is the change that will need to happen for me to over come this.
I hope everyone bears with me....I can tell I'm being rather needy at the moment. I'm just airing some thoughts and looking for some ideas and answers along the way.
Tex, I need to start looking at this as preparing for another horse show, it takes lots of time, practice and patience to get it to all come together. Wish I could hug you right now
Erica
Erica,
I don't think any of our family would know how to start helping us (in their defense). We are all learning ourselves.
They will come around when you are more up with it. My husband was very sympathetic but didn't know what to do to help me. He still can't remember what I can eat and can't LOL But I know he wants me to feel better.
You will feel better, it just takes time..... Read, read, and read and listen to your body.
I have my life back, thanks to this board and friends on it.
Be patient,
Love,
Connie
I don't think any of our family would know how to start helping us (in their defense). We are all learning ourselves.
They will come around when you are more up with it. My husband was very sympathetic but didn't know what to do to help me. He still can't remember what I can eat and can't LOL
But I know he wants me to feel better. You will feel better, it just takes time..... Read, read, and read and listen to your body.
I have my life back, thanks to this board and friends on it.
Be patient,
Love,
Connie
Live, Laugh & Love Much
Hi Erica,
I agree with the wonderful advice you already received but thought I'd chime in as well. I was diagnosed in September of last year, was put on Budesonide, but unfortunately it did not do much for me. I was very sick, constantly losing weight, and my bowel movements were either WD or very smelly with fat in them. I started keeping a very detailed diary in October (symptoms, ingredients) and also started leaving away gluten and dairy in October, and once the Enterolab results came in at the end of November (I only tested the 4 major foods, and maybe should have tested the whole thing) I also left away eggs and soy. A month later, I could not tell a difference. I was still very sick, still having WD, still losing weight. I was so sick and tired of being sick and tired that I decided to start the elimination diet the day after Christmas:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732
For the first three weeks I only ate lamb, sweet potatoes, olive oil, salt, pepper, and 1-2 bananas a day. I guess I was quite lucky because pretty soon my BM changed from a 7 on the Bristol stool scale to mostly 5's. After three weeks I tried out regular potatoes, then cod and other wild seafood, taking it super slowly. I was a bit discouraged when my BM became mostly 6's for no apparent reason without any further diet changes. I decided to leave away the sweet potatoes and my BM changed to 4 and 5's. In March I did a sweet potato trial and promptly had nausea and diarrhea the entire next day. I was disappointed because I really like sweet potatoes, so for now, I am leaving them away. I might give them another try a few months from now. Each time I try a food and it does not go over well, it takes me quite a while to recover (physically and mentally, sometimes it takes me two weeks before I am ready to try something, knowing fully well that it might feel like food poisoning a day later). Right now (5 months after starting this trial) I am eating lamb/chicken/beef/cod/tuna with potatoes/rice, avocado, olives, olive oil, salt, pepper, bananas and rice cakes. The newest item I tried was plantains thanks to a suggestion on this board. So far, so good. I really like the homemade plantain tortillas (plantains, olive oil, water, salt). I tried to add well-cooked veggies a while ago, like broccoli and cauliflower, also nut butters like cashew butter so I could add some calories. However, the bloating was so awful and painful that I cut out the veggies and the cashew butter. I will give my intestines some more time to heal before trying again. I also tried potato chips and tortilla chips. They did not make me feel good at all. I don't know if it was the grease or the corn with the tortilla chips. Same thing, I will wait some more time before giving it another try.
The fewer ingredients you have, the easier it is to tell what is an offending food for you. Back in October, when I first started the diary, I noticed that I quickly had 150 ingredients in my excel spreadsheet (a lot of gluten free foods have 10 or 15 ingredients listed on the box). So instead of baking an imitation of what I would eat prior to my diagnosis, I went back to the very basics. It is very difficult if not impossible to tell what is causing you trouble if you have too many variables.
I agree with Tex that this disease messes with our mind big time. I was always go happy go lucky and I would love to find that personality again!!! I am very grateful to all the wonderful people on here. Without their advice I would be very depressed to say the least. Also, I would still be having WD every day, or I would be on stronger meds than Budesonide. Right now, I am able to have normal BMs with diet alone!!!
About not getting help from your doctor: I felt very much like that last week. I have had this irritation in my airways/dry cough since March, as well as on and off tingling in the entire body, and sometimes pain and weird sensations in my right leg (it feels too heavy, feels like it will fall asleep, feels like I am wearing a tight sock when I am barefoot). This comes and goes, it is not constant. Sometimes both wrists are extremely painful, then the next day they feel fine, a few days later, they hurt again. Sometimes my spine hurts just from touching the carseat or the office chair, other times the muscles on either side of the spine hurt. I seem to have all these aches and pains that I never had before my diagnosis with MC. The pain in my right groin seems better, most days, and the initial pain in my ribs is nearly gone. Anyway, in March the PA had told me to come back if the cough and the paresthesia would not go away. So, I had a follow-up with my PCP last week. I told her that the cough did not go away. She sent me for a chest x-ray which was normal and said to come back in a few weeks if the cough was still not better. I also told her that the sensations in my right leg have actually gotten worse. I mentioned the other pains and aches that come and go. She said it could not be multiple sclerosis, it could not be scleroderma, it could not be....(she went through a whole laundry list of diseases) because the symptoms did not fit the pattern. She finally said she really did not know, that I was a very well studied patient and that nothing seemed to make sense. I told her that I appreciated her honesty and asked her if there was anything she could think of that I could do to make the sensations in my leg better, or at least keep it from getting worse. She said no, there wasn't. She basically threw her hands in the air and said nothing made sense whatsoever and that I should come back in 6 months for a follow-up. She then also said "some diseases like multiple sclerosis and connective tissue diseases are very confusing in the beginning, the symptoms don't seem to fall into a pattern or make sense, but over time they become a lot worse and it becomes obvious what the disease is. But believe me, you do not want to have those diseases, and the treatments for those are very harsh and come with a lot of side effects". And then she left the office. I was speechless! Thanks a lot!! What was the point of that??? It is not that I enjoy having symptoms or going to the doctor for that matter. I'd rather be as healthy as I used to be pre-MC.....
After fuming for some time, sleeping over it a few times, and trying not to think of multiple sclerosis whenever my leg feels like it is going to sleep, I decided that the likeliest reason by far is MC or celiac disease or both and that I need to continue researching healing approaches for MC. I started reading the Paleo Approach (Reverse Autoimmune Disease and Heal Your Body) by Sarah Ballantyne to learn more about autoimmune diseases. I am continuing with the diet, I am doing meditation (which also helps me deal with all of this), I should reduce my stress and increase my sleep (easier said than done). But in the long run, I need to heal myself, because obviously, my PCP is at the end of her rope. She probably never dealt with anybody with MC before and most likely finds it frustrating if she cannot determine what is wrong.
Keep up the good work, Erica. It will get better!!! It just takes a lot of time and detective work to figure this all out, a lot longer than I thought it would. The hard part is that we all have to figure out our own safe diet. But we can do this!
Love, Patricia
I agree with the wonderful advice you already received but thought I'd chime in as well. I was diagnosed in September of last year, was put on Budesonide, but unfortunately it did not do much for me. I was very sick, constantly losing weight, and my bowel movements were either WD or very smelly with fat in them. I started keeping a very detailed diary in October (symptoms, ingredients) and also started leaving away gluten and dairy in October, and once the Enterolab results came in at the end of November (I only tested the 4 major foods, and maybe should have tested the whole thing) I also left away eggs and soy. A month later, I could not tell a difference. I was still very sick, still having WD, still losing weight. I was so sick and tired of being sick and tired that I decided to start the elimination diet the day after Christmas:
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732
For the first three weeks I only ate lamb, sweet potatoes, olive oil, salt, pepper, and 1-2 bananas a day. I guess I was quite lucky because pretty soon my BM changed from a 7 on the Bristol stool scale to mostly 5's. After three weeks I tried out regular potatoes, then cod and other wild seafood, taking it super slowly. I was a bit discouraged when my BM became mostly 6's for no apparent reason without any further diet changes. I decided to leave away the sweet potatoes and my BM changed to 4 and 5's. In March I did a sweet potato trial and promptly had nausea and diarrhea the entire next day. I was disappointed because I really like sweet potatoes, so for now, I am leaving them away. I might give them another try a few months from now. Each time I try a food and it does not go over well, it takes me quite a while to recover (physically and mentally, sometimes it takes me two weeks before I am ready to try something, knowing fully well that it might feel like food poisoning a day later). Right now (5 months after starting this trial) I am eating lamb/chicken/beef/cod/tuna with potatoes/rice, avocado, olives, olive oil, salt, pepper, bananas and rice cakes. The newest item I tried was plantains thanks to a suggestion on this board. So far, so good. I really like the homemade plantain tortillas (plantains, olive oil, water, salt). I tried to add well-cooked veggies a while ago, like broccoli and cauliflower, also nut butters like cashew butter so I could add some calories. However, the bloating was so awful and painful that I cut out the veggies and the cashew butter. I will give my intestines some more time to heal before trying again. I also tried potato chips and tortilla chips. They did not make me feel good at all. I don't know if it was the grease or the corn with the tortilla chips. Same thing, I will wait some more time before giving it another try.
The fewer ingredients you have, the easier it is to tell what is an offending food for you. Back in October, when I first started the diary, I noticed that I quickly had 150 ingredients in my excel spreadsheet (a lot of gluten free foods have 10 or 15 ingredients listed on the box). So instead of baking an imitation of what I would eat prior to my diagnosis, I went back to the very basics. It is very difficult if not impossible to tell what is causing you trouble if you have too many variables.
I agree with Tex that this disease messes with our mind big time. I was always go happy go lucky and I would love to find that personality again!!! I am very grateful to all the wonderful people on here. Without their advice I would be very depressed to say the least. Also, I would still be having WD every day, or I would be on stronger meds than Budesonide. Right now, I am able to have normal BMs with diet alone!!!
About not getting help from your doctor: I felt very much like that last week. I have had this irritation in my airways/dry cough since March, as well as on and off tingling in the entire body, and sometimes pain and weird sensations in my right leg (it feels too heavy, feels like it will fall asleep, feels like I am wearing a tight sock when I am barefoot). This comes and goes, it is not constant. Sometimes both wrists are extremely painful, then the next day they feel fine, a few days later, they hurt again. Sometimes my spine hurts just from touching the carseat or the office chair, other times the muscles on either side of the spine hurt. I seem to have all these aches and pains that I never had before my diagnosis with MC. The pain in my right groin seems better, most days, and the initial pain in my ribs is nearly gone. Anyway, in March the PA had told me to come back if the cough and the paresthesia would not go away. So, I had a follow-up with my PCP last week. I told her that the cough did not go away. She sent me for a chest x-ray which was normal and said to come back in a few weeks if the cough was still not better. I also told her that the sensations in my right leg have actually gotten worse. I mentioned the other pains and aches that come and go. She said it could not be multiple sclerosis, it could not be scleroderma, it could not be....(she went through a whole laundry list of diseases) because the symptoms did not fit the pattern. She finally said she really did not know, that I was a very well studied patient and that nothing seemed to make sense. I told her that I appreciated her honesty and asked her if there was anything she could think of that I could do to make the sensations in my leg better, or at least keep it from getting worse. She said no, there wasn't. She basically threw her hands in the air and said nothing made sense whatsoever and that I should come back in 6 months for a follow-up. She then also said "some diseases like multiple sclerosis and connective tissue diseases are very confusing in the beginning, the symptoms don't seem to fall into a pattern or make sense, but over time they become a lot worse and it becomes obvious what the disease is. But believe me, you do not want to have those diseases, and the treatments for those are very harsh and come with a lot of side effects". And then she left the office. I was speechless! Thanks a lot!! What was the point of that??? It is not that I enjoy having symptoms or going to the doctor for that matter. I'd rather be as healthy as I used to be pre-MC.....
After fuming for some time, sleeping over it a few times, and trying not to think of multiple sclerosis whenever my leg feels like it is going to sleep, I decided that the likeliest reason by far is MC or celiac disease or both and that I need to continue researching healing approaches for MC. I started reading the Paleo Approach (Reverse Autoimmune Disease and Heal Your Body) by Sarah Ballantyne to learn more about autoimmune diseases. I am continuing with the diet, I am doing meditation (which also helps me deal with all of this), I should reduce my stress and increase my sleep (easier said than done). But in the long run, I need to heal myself, because obviously, my PCP is at the end of her rope. She probably never dealt with anybody with MC before and most likely finds it frustrating if she cannot determine what is wrong.
Keep up the good work, Erica. It will get better!!! It just takes a lot of time and detective work to figure this all out, a lot longer than I thought it would. The hard part is that we all have to figure out our own safe diet. But we can do this!
Love, Patricia
You are so right, Connie!
I remember when I posted on here for the very first time, and then started receiving all these caring answers, I had tears rolling down my cheeks. I felt like finally somebody understood me and was able to help me more than my doctors are able to and that I was finally not alone anymore. I have a very loving husband, but he can't really help me much with this, I need to figure this out, I need to learn all there is to learn, so I can treat myself with my diet (and my lifestyle). My husband is as grateful for this website as I am, not that he reads it, but he knows that it makes me feel so much better, physically and mentally, because of the top notch advice and caring support I receive.
And yes, Erica. I agree, it is a very lonely disease. To me, it feels like childbirth did. Each time I had all these loving and helpful people in the room with me, but in the end, I was the only one in pain and pushing. The others couldn't really do it for me. The only thing they could do for me is be at my side and cheer me on.
The support on here is invaluable. I don't even want to think about having this disease twenty years ago, before internet and message boards....
Love, Patricia
I remember when I posted on here for the very first time, and then started receiving all these caring answers, I had tears rolling down my cheeks. I felt like finally somebody understood me and was able to help me more than my doctors are able to and that I was finally not alone anymore. I have a very loving husband, but he can't really help me much with this, I need to figure this out, I need to learn all there is to learn, so I can treat myself with my diet (and my lifestyle). My husband is as grateful for this website as I am, not that he reads it, but he knows that it makes me feel so much better, physically and mentally, because of the top notch advice and caring support I receive.
And yes, Erica. I agree, it is a very lonely disease. To me, it feels like childbirth did. Each time I had all these loving and helpful people in the room with me, but in the end, I was the only one in pain and pushing. The others couldn't really do it for me. The only thing they could do for me is be at my side and cheer me on.
The support on here is invaluable. I don't even want to think about having this disease twenty years ago, before internet and message boards....
Love, Patricia
Oh Connie and Patricia...
You've really put a smile on my face and tears streaming down my cheeks....right now it certainly is all about finding that inner strength and absorbing all the great stories from those that certainly been there done that.
As I read Patricia's story it makes me wonder if you may be super low on Magnesium with those symptoms. I'm learning so much from this forum, its a bit overwhelming, but at the same time I can't get enough of what's going on and why my body is doing this to me. I was a Very Energetic person in my 20's and 30's I notice I can't push myself like that now, that frustrates me.
Connie, my husband is empathetic as well, and is relieved I have found this forum to be so helpful too. At the same time he also can't remember day to day what it is that I can/can't have either guess that's just who he is. Heck, apparently it is gonna take me more time to adjust my menu until this MC calms down.
I work in the most exciting made from scratch food place ever and it disappoints me that I am not able to participate in tasting 99% of it anymore. Food truly is the most boring thing for me ever now. How does one eat 2-3 things over and over for days on end??
When the right food has been eliminated how long does it take the body to respond?
Thanks so much for everything right now....
Erica
You've really put a smile on my face and tears streaming down my cheeks....right now it certainly is all about finding that inner strength and absorbing all the great stories from those that certainly been there done that.
As I read Patricia's story it makes me wonder if you may be super low on Magnesium with those symptoms. I'm learning so much from this forum, its a bit overwhelming, but at the same time I can't get enough of what's going on and why my body is doing this to me. I was a Very Energetic person in my 20's and 30's I notice I can't push myself like that now, that frustrates me.
Connie, my husband is empathetic as well, and is relieved I have found this forum to be so helpful too. At the same time he also can't remember day to day what it is that I can/can't have either guess that's just who he is. Heck, apparently it is gonna take me more time to adjust my menu until this MC calms down.
I work in the most exciting made from scratch food place ever and it disappoints me that I am not able to participate in tasting 99% of it anymore. Food truly is the most boring thing for me ever now. How does one eat 2-3 things over and over for days on end??
When the right food has been eliminated how long does it take the body to respond?
Thanks so much for everything right now....
Erica
Patricia, I read your post about all of your various symptoms and wanted to chime in. As I healed from MC, I discovered that while my digestion had gotten so much better, after several years I still had a lot of muscle aches and pains and other irritations. I thought that it was just the way it was, that I had some long-term damage to my body and/or just getting older (I'm 68). But over time I have discovered that my long-standing colitis had resulted in some vitamin and mineral deficiencies and that when these were corrected, many of my long-standing issues were much improved. For example, within a week of starting the bioactive forms of B12 (methylcobalamin), B6 (P-5'-P) and tetramethyl folate, much of the stiffness and soreness particularly in my hands, but also in other muscles almost disappeared. It was almost like a miracle. Of course we are all different, and what works for one person might not work for others, but investigating possible deficiencies due to the malabsorption issues that go along with active MC and the limited diet might be helpful. Of course adding supplements requires careful attention to the inactive ingredients, and starting slowly. This has been mentioned on the forum before, but I just wanted to bring it up again as I found it very helpful for me.
Like you, the help and support from the Forum community was so important in my recovery. It is so easy to get discouraged and depressed since the healing can take a long time and family members are not as patient as we would like! But all of us here can relate, and offer encouragement that if we persevere, we will heal and get our lives back!
Rosie
Like you, the help and support from the Forum community was so important in my recovery. It is so easy to get discouraged and depressed since the healing can take a long time and family members are not as patient as we would like! But all of us here can relate, and offer encouragement that if we persevere, we will heal and get our lives back!
Rosie
Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time………Thomas Edison
Thank you, Erica and Rosie!
I initially asked my GI what supplements I should take so I would not run into any deficiencies. He said the only one that was necessary was vitamin D. And initially, the blood test showed that I was very vitamin D deficient. I have been taking it and my vitamin D improved (from 18 to 28, still deficient, though).
Based on information on this board I started using Magnesium oil. I have not used oral magnesium for fear of diarrhea. I bought it, though, and next time I have C, I will start using it.
In March, when the tingling sensation began, I started taking the active forms of B6, folate and B12 (the equivalent of the Metanx prescription), thinking it might be a vitamin B deficiency. There are days that I do not have the tingling, but most days I do, and the other sensations in the right leg have popped up since. I am not sure, though, how long it takes for the supplements to have an effect. It might just take longer than a month or two.
The B12 in November was 293 (which my PCP thought was good enough), after taking the supplement, it is now at 665.
I am not sure, whether gluten cross reactivity might play a role?
http://www.thepaleomom.com/2013/03/glut ... it-up.html
What do you guys think about that?
I did read that up to 25% of patients with celiac disease have peripheral neuropathies. Also, when I googled tingling, neuropathy, and such terms combined with perskyfarms, many, many threads on this board popped up. Which makes me think that it is not that rare for a person with MC to have such weird sensations. I have been 100% gluten free, but I found some threads where people mentioned such sensations months after having gone gluten free. I still do not understand how all this is possible, or this all works in our bodies, but I will continue to read and research to crack the code and become the healthy me I used to be.
Love, Patricia
I initially asked my GI what supplements I should take so I would not run into any deficiencies. He said the only one that was necessary was vitamin D. And initially, the blood test showed that I was very vitamin D deficient. I have been taking it and my vitamin D improved (from 18 to 28, still deficient, though).
Based on information on this board I started using Magnesium oil. I have not used oral magnesium for fear of diarrhea. I bought it, though, and next time I have C, I will start using it.
In March, when the tingling sensation began, I started taking the active forms of B6, folate and B12 (the equivalent of the Metanx prescription), thinking it might be a vitamin B deficiency. There are days that I do not have the tingling, but most days I do, and the other sensations in the right leg have popped up since. I am not sure, though, how long it takes for the supplements to have an effect. It might just take longer than a month or two.
The B12 in November was 293 (which my PCP thought was good enough), after taking the supplement, it is now at 665.
I am not sure, whether gluten cross reactivity might play a role?
http://www.thepaleomom.com/2013/03/glut ... it-up.html
What do you guys think about that?
I did read that up to 25% of patients with celiac disease have peripheral neuropathies. Also, when I googled tingling, neuropathy, and such terms combined with perskyfarms, many, many threads on this board popped up. Which makes me think that it is not that rare for a person with MC to have such weird sensations. I have been 100% gluten free, but I found some threads where people mentioned such sensations months after having gone gluten free. I still do not understand how all this is possible, or this all works in our bodies, but I will continue to read and research to crack the code and become the healthy me I used to be.
Love, Patricia