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Sorry about the detail, but I am really unsure how to proceed.
My son and I went to a movie today (Muppets - WONDERFUL! All the old magic!). Then he wanted to go shopping. It had been a long time since we had eaten (I'd had sole and potato at home, followed by a bit of cramping which passed) so we went into a restaurant, where they grilled me a steak, and served it with steamed sweet potatoes. A little gurgling, but nothing serious.
When I got home I ate my turkey soup and mashed potatoes.
I told you guys that to keep the GERD down without drinking too much water I have been sucking on rock candy, which REALLY helps, but I know I am getting way too much white sugar. (Not healthy at all. Is it better than taking a PPI?)
I had one episode of D on Wednesday, and nothing yesterday. All I ate yesterday was the soup/potato and a small piece of lamb, some potato and some overcooked green peas.
I am taking a double dose of stool softeners.
After the turkey/potato mash this evening I seemed to, literally, blow up so my jeans felt seriously uncomfortable. These are old jeans that I can now wear very comfortably after losing a lot of weight.
No gurgling or cramping, but a heavy, sort of swollen feeling, with pressure right under my rib cage.
I don't know whether I am heading into another week of C, which will have to be relieved by eating something that will force D again.
I am trying not to take the pain pills, but my back and shoulder are killing me.
I am SO exhausted again, and have no idea how to break this cycle.
I am going to see a new GE. Don't know if it will help, but maybe, since the other one doesn't trust me (rightly) to follow him blindly, and doesn't like it, it's all I can do right now.
This has been going on for so long now. I feel I am not getting anywhere near finding any sort of relief.
My reactions are SO different..so confused!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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draperygoddess
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Lesley,
So sorry you've been a victim of Hindenburg syndrome! (That's my term for blowing up like a blimp after eating something that doesn't agree with me.) Are you keeping a food diary? That was the only way I could pinpoint what was causing my symptoms. If you write down everything you eat and drink, what time you had it, and all your symptoms and what time they occurred, you may be able to determine what's setting you off. What are you avoiding, other than gluten?
I read an article recently that made sense to me--it said that often when we know we're gluten intolerant, when we have a reaction to something, we assume we were cross-contaminated by some miniscule amount of gluten, when in reality we may be reacting to another food entirely. The fact that you're having not only GI symptoms, but also aches, pains, and fatigue, points to an ongoing reaction of some sort.
So sorry you've been a victim of Hindenburg syndrome! (That's my term for blowing up like a blimp after eating something that doesn't agree with me.) Are you keeping a food diary? That was the only way I could pinpoint what was causing my symptoms. If you write down everything you eat and drink, what time you had it, and all your symptoms and what time they occurred, you may be able to determine what's setting you off. What are you avoiding, other than gluten?
I read an article recently that made sense to me--it said that often when we know we're gluten intolerant, when we have a reaction to something, we assume we were cross-contaminated by some miniscule amount of gluten, when in reality we may be reacting to another food entirely. The fact that you're having not only GI symptoms, but also aches, pains, and fatigue, points to an ongoing reaction of some sort.
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Cynthia,
The strange thing is I blew up immediately after turkey soup and potatoes. Precisely the things I am supposed to not be sensitive to.
I can't understand it. I wrote EVERYTHING I ate yesterday in my message. Apart from And the day before, apart from a few pieces of baked apple with a little So Delicious coconut ice cream.
And no amount of stool softener is helping the C. I have no idea what I could be reacting to.
I am going to start writing everything down with times etc. today.
According to my test results my sed rate is elevated, so I am clearly in an ongoing reaction. I just don't know to what, and why I am reacting like this.
And why no BM unless I trigger D?
My cholesterol is also bad - LDL too high, HDL too low, but I am not going to take statins again. I HAVE to get off the meds.
I am getting pretty desperate.
The strange thing is I blew up immediately after turkey soup and potatoes. Precisely the things I am supposed to not be sensitive to.
I can't understand it. I wrote EVERYTHING I ate yesterday in my message. Apart from And the day before, apart from a few pieces of baked apple with a little So Delicious coconut ice cream.
And no amount of stool softener is helping the C. I have no idea what I could be reacting to.
I am going to start writing everything down with times etc. today.
According to my test results my sed rate is elevated, so I am clearly in an ongoing reaction. I just don't know to what, and why I am reacting like this.
And why no BM unless I trigger D?
My cholesterol is also bad - LDL too high, HDL too low, but I am not going to take statins again. I HAVE to get off the meds.
I am getting pretty desperate.
Lesley,
It's time to step back, take a deep breath, and recognize that until your intestines can achieve some significant healing, you're going to continue to react to virtually everything you eat, simply because of your extremely high inflammation level. Very few of us recover quickly, and those of us who have been suffering from gluten-sensitivity for decades, without realizing it, usually take quite a long time to recover - but we do recover, if we stay the course.
It took me a year and a half to reach remission, because I didn't use any meds to help suppress the inflammation. It took Polly almost a year, as I recall. All we can do is to eat a diet that we have determined to be best for us, get enough rest, (and eat enough protein to help the intestines to heal), and hope for the best.
You're going to continue to react for a while, that's for certain. As time goes by, though, (and as your gut heals), your symptoms will eventually become milder, and you'll notice that you're feeling better, on the average. And as time goes on, you'll continue to improve. Just eating the right foods, and doing everything right, is not enough - another vital ingredient in the formula for success is the combination of patience and perseverance. It takes time for the gut to heal, and until it heals sufficiently, it can't perform normally - that's why MC causes the symptoms that are associated with it. It took some of us decades for our disease to mature - we just hope that we can reverse the process in much less time, but we can't turn it around overnight, no matter what we do.
Trust me - most of us have been there, and we've experienced that hopeless feeling that can seem so overpowering. In my case, at least, I didn't have any other choice, except to tough it out, and hope that it eventually worked, because I wasn't even aware of any meds to treat it, and I sure wasn't willing to just give up and allow the disease to destroy the rest of my life, without even putting up a fight - I decided that it had already wasted enough of my life, and I was willing to do whatever it took, to gain the upper hand.
And that's exactly what you're doing, so it should work. You may have to fine tune your treatment program, from time to time, but basically, what you're doing, seems sound.
Tex
It's time to step back, take a deep breath, and recognize that until your intestines can achieve some significant healing, you're going to continue to react to virtually everything you eat, simply because of your extremely high inflammation level. Very few of us recover quickly, and those of us who have been suffering from gluten-sensitivity for decades, without realizing it, usually take quite a long time to recover - but we do recover, if we stay the course.
It took me a year and a half to reach remission, because I didn't use any meds to help suppress the inflammation. It took Polly almost a year, as I recall. All we can do is to eat a diet that we have determined to be best for us, get enough rest, (and eat enough protein to help the intestines to heal), and hope for the best.
You're going to continue to react for a while, that's for certain. As time goes by, though, (and as your gut heals), your symptoms will eventually become milder, and you'll notice that you're feeling better, on the average. And as time goes on, you'll continue to improve. Just eating the right foods, and doing everything right, is not enough - another vital ingredient in the formula for success is the combination of patience and perseverance. It takes time for the gut to heal, and until it heals sufficiently, it can't perform normally - that's why MC causes the symptoms that are associated with it. It took some of us decades for our disease to mature - we just hope that we can reverse the process in much less time, but we can't turn it around overnight, no matter what we do.
Trust me - most of us have been there, and we've experienced that hopeless feeling that can seem so overpowering. In my case, at least, I didn't have any other choice, except to tough it out, and hope that it eventually worked, because I wasn't even aware of any meds to treat it, and I sure wasn't willing to just give up and allow the disease to destroy the rest of my life, without even putting up a fight - I decided that it had already wasted enough of my life, and I was willing to do whatever it took, to gain the upper hand.
And that's exactly what you're doing, so it should work. You may have to fine tune your treatment program, from time to time, but basically, what you're doing, seems sound.
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.
Lesley,
When I read the part of your post where you said "I seemed to, literally, blow up so my jeans felt seriously uncomfortable", I thought to myself, "that's what happens to me when I eat So Delicious Coconut Ice Cream." So it was ironic to me that it was one of the things you ate recently. I love the stuff but it doesn't love me. It actually hits me harder than a big glass of milk would. No joke.
I think the food / symptom diary is very helpful. And you do need to write down everything including meds and liquids. Make two columns in a notebook. In the left column write down the time and what you consume and in the right column write down the time and journal about how you feel and any elimination. Over time you will be able to see your pattern. Everyone is different that is why this tool is so important and helpful.
And I know I am not telling you anything new here... but as just a friendly reminder, adequate hydration and exercise help with C.
Movement also helps with joint pain. One of my favorite sayings is "Motion is the lotion."
Hang in there,
Gabby
When I read the part of your post where you said "I seemed to, literally, blow up so my jeans felt seriously uncomfortable", I thought to myself, "that's what happens to me when I eat So Delicious Coconut Ice Cream." So it was ironic to me that it was one of the things you ate recently. I love the stuff but it doesn't love me. It actually hits me harder than a big glass of milk would. No joke.
I think the food / symptom diary is very helpful. And you do need to write down everything including meds and liquids. Make two columns in a notebook. In the left column write down the time and what you consume and in the right column write down the time and journal about how you feel and any elimination. Over time you will be able to see your pattern. Everyone is different that is why this tool is so important and helpful.
And I know I am not telling you anything new here... but as just a friendly reminder, adequate hydration and exercise help with C.
Movement also helps with joint pain. One of my favorite sayings is "Motion is the lotion."
Hang in there,
Gabby
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draperygoddess
- Rockhopper Penguin
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- Joined: Mon Aug 29, 2011 6:49 am
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Lesley,
I assume that your tests showed you're not reactive to potatoes, right? Tex is right--you may react some to EVERYTHING (or so it would seem) until things calm down. Just the act of eating makes an already-upset system unhappy sometimes. However, that sudden bloating would seem to indicate a reaction to something specific. I blow up like that in response to dairy and potatoes.
Keep in mind that for some of us, the C is as much of a symptom as the D. IOW, lack of D doesn't necessarily mean no reaction. If you feel crummy with C, in my book that's as bad as feeling crummy with D.
In the beginning of my diet trial, I tried to limit myself to a small list of foods, so if I added something different, I'd know what I was reacting to. (Although sometimes I didn't follow my own rule and wouldn't know what made me sick!)
Hope things calm down quickly! It does take time, and it's a process. The fact that you were well enough to go to a movie is progress!
(Gabby, So Delicious does the same thing to me. Made me very sad when I figured it out!)
I assume that your tests showed you're not reactive to potatoes, right? Tex is right--you may react some to EVERYTHING (or so it would seem) until things calm down. Just the act of eating makes an already-upset system unhappy sometimes. However, that sudden bloating would seem to indicate a reaction to something specific. I blow up like that in response to dairy and potatoes.
Keep in mind that for some of us, the C is as much of a symptom as the D. IOW, lack of D doesn't necessarily mean no reaction. If you feel crummy with C, in my book that's as bad as feeling crummy with D.
In the beginning of my diet trial, I tried to limit myself to a small list of foods, so if I added something different, I'd know what I was reacting to. (Although sometimes I didn't follow my own rule and wouldn't know what made me sick!)
Hope things calm down quickly! It does take time, and it's a process. The fact that you were well enough to go to a movie is progress!
(Gabby, So Delicious does the same thing to me. Made me very sad when I figured it out!)
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Thanks Tex. I needed that.
I WILL persevere. Patience is another issue.
C is not a worry right now. It's cramps and D with undigested food in it, a pea and some sweet potato as examples. I was on the floor because of weakness and exhaustion. Couldn't move.
When I have C (several days of no BM) could more of the food being absorbed? If so, why am I SO exhausted? Or is it simply sitting there and preventing other food from going through?
I have NO idea whether the BM is because of the stool softeners or any food I might have eaten, though the repertoire has been very limited. The thing is it's still MC type D. This is one of the things that is
confusing me.
These last days I am totally unable to exercise. I cannot move, and of course, not being in the water, makes my back worse. I can't go anyway until the D settles down because I will NOT be popular having an attack in the water.
Catch 22.
I've never given up on anything. Especially my right to live my life without this torture. I have been fighting for it for most of my life, as far back as I can remember.I sure wasn't willing to just give up and allow the disease to destroy the rest of my life, without even putting up a fight
I WILL persevere. Patience is another issue.
C is not a worry right now. It's cramps and D with undigested food in it, a pea and some sweet potato as examples. I was on the floor because of weakness and exhaustion. Couldn't move.
When I have C (several days of no BM) could more of the food being absorbed? If so, why am I SO exhausted? Or is it simply sitting there and preventing other food from going through?
I have NO idea whether the BM is because of the stool softeners or any food I might have eaten, though the repertoire has been very limited. The thing is it's still MC type D. This is one of the things that is
confusing me. I have no idea what to fine tune. I am sure I am not getting much in the way of nutrients. In fact, as I said, I am sure I was getting more when I was juicing mild veggies and fruit. I certainly felt a little better with one small glass of apple, carrot, pear, and spinach juice daily, although fresh produce is not supposed to be good.You may have to fine tune your treatment program, from time to time
These last days I am totally unable to exercise. I cannot move, and of course, not being in the water, makes my back worse. I can't go anyway until the D settles down because I will NOT be popular having an attack in the water.
Catch 22.
Gabby wrote:but as just a friendly reminder, adequate hydration and exercise help with C
I've maintained right from the beginning that dehydration is probably a part of the problem here, but so far, my pleas have fallen on deaf ears. Dehydration tends to cause C, which will eventually be followed by D. Stool softeners can't do much, without adequate water to allow them to do their job - it's not the ingredients in the stool softeners that help to relieve C, it's the water that those ingredients attract and hold, (but the water has to be available - they can't create water).
Lesley,
That said, yes, your recent problem could be due to the So Delicious Coconut Ice Cream, as Gabby and Cynthia mentioned. Hemp milk causes a similar reaction for me - no D, just bloating.
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.
You will, in time.Lesley wrote:I have no idea what to fine tune.
You're putting the backslash in the wrong bracket. In HTML code, (or bulletin board code), the backslash goes in the second operator, (not the first), because it informs the browser that the quote, (or whatever function is being defined), ends at that point.Lesley wrote:How the heck did I get those quotes so wrong?
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, I was curious as to your above statement It took some of us decades for our disease to mature . If you don't mind me asking, how did you know it took decades? Was it because you had the symptoms of MC without knowing it was MC? That you thought your symptoms were caused by something else, and then when you were diagnosed with MC it suddenly all made sense?
Mandy
Mandy
Lesley, I am so sorry to hear what has been going on with you!! I am wondering a few things. I don't know how old you are but, could hormones be a part of your aches and pains? I know that before I was diagnosed with MC, I was diagnosed with adrenal fatigue which was caused by my low hormone levels. I had aches and pains which have now mostly gone away, once i began bio-indenticals to supplement my low hormone levels. I truly believe if your hormone levels are off, then everything is out of wack!
Mandy
Mandy
I thought I was doing that, but clearly not. Got it now, I hope.You're putting the backslash in the wrong bracket.
Gabby and Cynthia - I didn't react to the ice cream. Surprisingly it was immediately after I had the soup and potatoes. Literally as it hit my stomach. First time for that. It has to be the inflammation acting up when I eat anything.
But I won't eat the ice cream anymore.
I am getting an ice cream maker (cost me a whole $11!) and will try to make my own sorbet type ice creams. Gabby - I am not reactive to potatoes, so that's basically what I have been eating, along with meat.
I have been doing that for the last couple of days. Times, reactions, everything.I think the food / symptom diary is very helpful. And you do need to write down everything including meds and liquids.
Tex and Gabby. I think I have proven to my doc that electrolyte enriched water DOES help with hyponatremia. My last tests, while a little low, were much better than they have been.adequate hydration and exercise help with C.
As for exercise, I am in the pool for 45 minutes to an hour 4-6x a week, except for the past few days, because of being SO sick.
I actually put on my suit on Thursday, but took it off because I felt so bad.
According to my sed rate I have a lot of inflammation going on which is doing it.
As for a movie - When the C part is active (Cynthia, I know this is also MC, but since I am on pain killers I don't know what is causing it) I can go out of the house if I am not too weak and exhausted. And sit through a movie in a comfortable theater, sitting on the aisle JIC! My son drives, and does everything, so I don't have to. He is terrific.
And going to a movie with my Adam is a real source of pleasure for me. He is an animator and a film maker, so it's professional for him as well as fun, but both of us are crazy about kids and kids movies, so the Muppets was both nostalgic for us, and great to listen to little kids, who don't know them, laughing with delight.
We sang along, quietly of course, to the songs we knew, and really enjoyed the ones we didn't.
It's wonderful, and in the true spirit of the old Muppets! Highly recommended. I am going again when I have a child to take with me.
I highly recommend laughter, and accessing the child inside of you when you are feeling horrible.
Mandy,
I had C all my life, but I didn't have MC all my life. I was almost certainly gluten-sensitive all my life, but I was asymptomatic until about 17 or 18 years ago, when my teeth, which had been virtually problem-free, all my life, (very few cavities), suddenly developed wall-to-wall cavities, cracks, splits, etc. That was my first definitive celiac symptom, (other than C, which can have other causes, also). About 5 years later, the D started in the form of alternating D and C. I thought I was having recurring relapses of either a bad case of the flu, or food poisoning, which happened about every 4 or 5 weeks at first, and then began to occur more frequently, until I was getting sick as a dog about every 10 days to 2 weeks, on the average. Then one day the D started, and wouldn't stop. That's when I caved in and went to see my doctor.
IMO, neither celiac disease, nor MC, are actually diseases - they're symptoms of gluten-sensitivity, and a bunch of other triggers, including certain drugs, bacterial or viral infections, stress, etc. Our genetics, first, and environmental factors, second, determine which one we are most likely to develop - of course, some of us develop both diseases, if the first one is not properly treated in time.
IMO, my MC developed either right before, during, or after the first episode of what I thought was the flu, but that's just a guess. My first gluten-sensitivity symptom, (constipation), started when I was just a few years old - I just didn't recognize it as a symptom at the time, and neither did anyone else.
Incidentally, Celiac and MC are not the only symptoms of gluten-sensitivity. IMO, virtually all autoimmune diseases are also symptoms of gluten-sensitivity - medical researchers simply don't have the skills, the cognizance, nor the incentive, to make the connection. Actually, the primary reason why they may never make the connection, is because of the huge financial disincentive that exists - if it were established that gluten-sensitivity is the primary cause of all autoimmune diseases, entire branches of medical specialties would no longer have a reason to exist - there would be no further need for the services of rheumatologists, for example. The "cure" would be simple, and the same for everyone - a GF diet. You don't need a doctor to adopt the GF diet - that's the main reason why they try so hard to discourage anyone from adopting the diet, without having a doctor's orders to do so - they would obviously love to retain this power, because of the financial incentive. They don't get paid, when someone starts a "bootleg" GF diet.
Does anyone think for a moment that there is no connection between the rapid rise in celiac disease, MC, and the autoimmune epidemic? It will be interesting to see how long they will be able to continue to suppress this information.
Tex
I had C all my life, but I didn't have MC all my life. I was almost certainly gluten-sensitive all my life, but I was asymptomatic until about 17 or 18 years ago, when my teeth, which had been virtually problem-free, all my life, (very few cavities), suddenly developed wall-to-wall cavities, cracks, splits, etc. That was my first definitive celiac symptom, (other than C, which can have other causes, also). About 5 years later, the D started in the form of alternating D and C. I thought I was having recurring relapses of either a bad case of the flu, or food poisoning, which happened about every 4 or 5 weeks at first, and then began to occur more frequently, until I was getting sick as a dog about every 10 days to 2 weeks, on the average. Then one day the D started, and wouldn't stop. That's when I caved in and went to see my doctor.
IMO, neither celiac disease, nor MC, are actually diseases - they're symptoms of gluten-sensitivity, and a bunch of other triggers, including certain drugs, bacterial or viral infections, stress, etc. Our genetics, first, and environmental factors, second, determine which one we are most likely to develop - of course, some of us develop both diseases, if the first one is not properly treated in time.
IMO, my MC developed either right before, during, or after the first episode of what I thought was the flu, but that's just a guess. My first gluten-sensitivity symptom, (constipation), started when I was just a few years old - I just didn't recognize it as a symptom at the time, and neither did anyone else.
Incidentally, Celiac and MC are not the only symptoms of gluten-sensitivity. IMO, virtually all autoimmune diseases are also symptoms of gluten-sensitivity - medical researchers simply don't have the skills, the cognizance, nor the incentive, to make the connection. Actually, the primary reason why they may never make the connection, is because of the huge financial disincentive that exists - if it were established that gluten-sensitivity is the primary cause of all autoimmune diseases, entire branches of medical specialties would no longer have a reason to exist - there would be no further need for the services of rheumatologists, for example. The "cure" would be simple, and the same for everyone - a GF diet. You don't need a doctor to adopt the GF diet - that's the main reason why they try so hard to discourage anyone from adopting the diet, without having a doctor's orders to do so - they would obviously love to retain this power, because of the financial incentive. They don't get paid, when someone starts a "bootleg" GF diet.
Does anyone think for a moment that there is no connection between the rapid rise in celiac disease, MC, and the autoimmune epidemic? It will be interesting to see how long they will be able to continue to suppress this information.
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.
Lesley wrote:Tex and Gabby. I think I have proven to my doc that electrolyte enriched water DOES help with hyponatremia. My last tests, while a little low, were much better than they have been.
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.