Renee,
Those symptoms are not good signs, obviously. According to your posts, you started taking Pepto-Bismol on April 16. The original plan was for 8 weeks at 6 tablets per day (which is a variation of the classic treatment of 8 tablets per day for 6 weeks). I'm wondering why you stopped taking it 2 weeks early. Your symptoms may be occurring simply because your gut hasn't had enough time to heal.
Or something in your diet may be causing the production of antibodies. Without any EnteroLab test results to go by, we can only guess at what foods may cause you to react, but beef and chicken are suspects, because many of us react to them. You might try avoiding them and eating turkey, lamb, venison, duck, quail, pheasant, goose, rabbit, etc. to see if that helps.
MC is very sensitive to hormone supplements and natural hormonal changes. HRT for example tends to prevent remission in many/most cases. Even contraceptives are often a problem, regardless of the way they are administered.
If worse comes to worst, you may need to re-do the Pepto-Bismol treatment in August, beginning early enough to ensure that your symptoms will be under control before the wedding.
Tex
New and wondering where to start.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hopefully it just hasn't had a chance to heal yet. My treatment plan was for 9 tablets for six weeks, which ended this past Sunday. Your confusion comes from the way I confused the number of tablets at first. I thought they said three tablets a day for six weeks, but they had said 3 tablets three times a day for six weeks. Luckily I wrote it down correctly, they called while I was at work and just a bit busy, and found the report sheet I wrote it on and corrected the error a few days in.
The GI assistant called back. She wants me to have my magnesium level checked tomorrow, see if the D worsens, if it does they will have me restart Budesonide and will use my baseline magnesium level and recheck levels if leg problems worsen as she said Budesonide can cause magnesium levels to drop. She also wants me to stop taking the magnesium supplements because it can cause D, which I knew. I asked her if the tests would be off because I've been taking it but she said I haven't been on it long enough to effect testing. I've read here that the test aren't real reliable unless they're tissue samples, but I'm assuming they'd be accurate enough to just watch for a drop caused by budesonide?
The GI assistant called back. She wants me to have my magnesium level checked tomorrow, see if the D worsens, if it does they will have me restart Budesonide and will use my baseline magnesium level and recheck levels if leg problems worsen as she said Budesonide can cause magnesium levels to drop. She also wants me to stop taking the magnesium supplements because it can cause D, which I knew. I asked her if the tests would be off because I've been taking it but she said I haven't been on it long enough to effect testing. I've read here that the test aren't real reliable unless they're tissue samples, but I'm assuming they'd be accurate enough to just watch for a drop caused by budesonide?
No, your GI's assistant doesn't understand how the body operates. Magnesium is stored in muscle tissue. Magnesium is a vital electrolyte. Blood levels absolutely have to be maintained in the normal range or many, many body systems get out of whack, and this can result in a life-threatening condition.Renee wrote:but I'm assuming they'd be accurate enough to just watch for a drop caused by budesonide?
When the diet does not provide adequate magnesium, the system will pull whatever amount is needed from the magnesium reserves stored in muscles to guarantee that the blood level is normal. Blood levels fluctuate randomly within the normal range at various times of the day and night, but they will always be somewhere within the normal range until there is no more magnesium left in the muscles to be scavenged. Using a blood level of magnesium as a reference reading to judge magnesium depletion by budesonide is totally absurd.
How do some people sleep through medical school and still get a degree?If there is any hope if getting any useful information out of that blood test, don't take any magnesium supplement between now and the blood draw, and make it a fasting test so that your blood doesn't get a short-term magnesium boost from your food. If you eat before the draw, the test result will be normal, no matter how deficient you might actually be. I'm serious, that's a pathetically unreliable test, and most doctors are naive enough to believe that the results are accurate simply because everyone uses it.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Renee
what a bummer that you had a set back...
The slight changes in ingredients may have been too soon. Tex has made good suggestion of game meats that are safest options for situations like this
Your doctors office had the right intention, being proactive to check for deficiencies, albeit in line with Tex's reply, the test will not be the most ideal indicator of what is going on.
hang in there... you have made progress..
the early stages of MC can be a bit of a 2 steps forward, 1 step back dance...
what a bummer that you had a set back...
The slight changes in ingredients may have been too soon. Tex has made good suggestion of game meats that are safest options for situations like this
Your doctors office had the right intention, being proactive to check for deficiencies, albeit in line with Tex's reply, the test will not be the most ideal indicator of what is going on.
hang in there... you have made progress..
the early stages of MC can be a bit of a 2 steps forward, 1 step back dance...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Renee,
For a couple of weeks when I began my diet, I ate only turkey and potatoes or rice. It was boring, but I felt better. Just made it different ways with only salt and coconut oil. That way, I had a baseline and knew that didn't hurt me and I added from there. And of course no medicine or supplements except d3. Only water and green tea for breakfast. I could take a half of a benedryl and get D or drink 3 sips of Pepsi and get D.....
Hope this helps and you start feeling better soon!!!
For a couple of weeks when I began my diet, I ate only turkey and potatoes or rice. It was boring, but I felt better. Just made it different ways with only salt and coconut oil. That way, I had a baseline and knew that didn't hurt me and I added from there. And of course no medicine or supplements except d3. Only water and green tea for breakfast. I could take a half of a benedryl and get D or drink 3 sips of Pepsi and get D.....
Hope this helps and you start feeling better soon!!!
Martha E.
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Philippians 4:13
Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
Thanks for your continued support, everyone. I was pretty depressed yesterday thinking that this process was going to start all over again and be as bad as it was from the beginning. Today I was able to relocate some more of my proactive mood and realistically this is no where near as bad as it was.
I had the blood draw today. I didn't eat before the draw so hopefully it will be as accurate as that unreliable test can be. My GI's assistant told me that they have had patients who developed LC from PPI's and had low magnesium levels as a result, so at least some of those tests were accurate. At least she didn't sound condescending or as if she didn't know what I was talking about. It's a small measure of gaining trust in them because at least they listened to me and they are concerned about putting me on budesonide if my magnesium is low. I know the test will probably come back normal and I won't allow that to give me a false sense of security but I'm determined to trust in this process and utilize all of the information that comes my way.
Tex, I just can't see myself eating rabbit or duck. I've tried bison and that sits well. I know most here can't tolerate beef but I haven't had any problems with it. I think the lamb is too fatty for me. It didn't go over well at all. I'm cool with turkey but think chicken is a problem, which is a bummer because I'm one of the unfortunate ones who is gaining weight with this diet. It doesn't make sense to me.
Yes, in the beginning I couldn't eat anything but rice, potatoes, and beef. I've added a few things without difficulty but I now think a lot of that had to do with the pepto and the smallish portions.
I'm not on any HTR anymore. Stopping those seemed to help, too. The problem with that is I'm having hot flashes at night again and not sleeping as well.
I haven't had D today and hope I don't have to go on Budesonide. I took Immodium yesterday so that may be preventing D. There just seem to be so many variables to this.
I had the blood draw today. I didn't eat before the draw so hopefully it will be as accurate as that unreliable test can be. My GI's assistant told me that they have had patients who developed LC from PPI's and had low magnesium levels as a result, so at least some of those tests were accurate. At least she didn't sound condescending or as if she didn't know what I was talking about. It's a small measure of gaining trust in them because at least they listened to me and they are concerned about putting me on budesonide if my magnesium is low. I know the test will probably come back normal and I won't allow that to give me a false sense of security but I'm determined to trust in this process and utilize all of the information that comes my way.
Tex, I just can't see myself eating rabbit or duck. I've tried bison and that sits well. I know most here can't tolerate beef but I haven't had any problems with it. I think the lamb is too fatty for me. It didn't go over well at all. I'm cool with turkey but think chicken is a problem, which is a bummer because I'm one of the unfortunate ones who is gaining weight with this diet. It doesn't make sense to me.
Yes, in the beginning I couldn't eat anything but rice, potatoes, and beef. I've added a few things without difficulty but I now think a lot of that had to do with the pepto and the smallish portions.
I'm not on any HTR anymore. Stopping those seemed to help, too. The problem with that is I'm having hot flashes at night again and not sleeping as well.
I haven't had D today and hope I don't have to go on Budesonide. I took Immodium yesterday so that may be preventing D. There just seem to be so many variables to this.
OK, I won't suggest any rattlesnake, armadillo, or alligator then. 
Despite the fact that a surprising number of members here react to chicken, no one reacts to turkey. It's a very safe source of protein (as long as we avoid the ones that are injected with butter or some other "tenderizing" or "moisturizing" solution.
You're gaining weight instead, so I have a hunch that your magnesium test result may come back normal. We'll see. You did the test right, so it should at least catch a serious magnesium deficiency.
Yes, this is a complex disease. It's good to see that you're doing better today. And I totally agree with you — when you find a doctor or medical team who is/are willing to actually listen, you have made a very lucky find and they will surely earn your trust. "Perfect" doctors do not exist (usually not because of their own faults, but because of the system they are forced to work within), but some of them are close enough to perfect to be priceless discoveries.
Tex
Despite the fact that a surprising number of members here react to chicken, no one reacts to turkey. It's a very safe source of protein (as long as we avoid the ones that are injected with butter or some other "tenderizing" or "moisturizing" solution.Magnesium deficiency can also cause those symptoms — I had them when my magnesium got critically low. I would wake up sweating like mad, even though the room was cool. However, I have a hunch that your magnesium is not that low and your symptoms are probably hormone-related, just as you suspect. Why? Because I was losing 2 pounds every week when my magnesium deficiency became really serious. That went on and on for months.Renee wrote:The problem with that is I'm having hot flashes at night again and not sleeping as well.
You're gaining weight instead, so I have a hunch that your magnesium test result may come back normal. We'll see. You did the test right, so it should at least catch a serious magnesium deficiency.
Yes, this is a complex disease. It's good to see that you're doing better today. And I totally agree with you — when you find a doctor or medical team who is/are willing to actually listen, you have made a very lucky find and they will surely earn your trust. "Perfect" doctors do not exist (usually not because of their own faults, but because of the system they are forced to work within), but some of them are close enough to perfect to be priceless discoveries.
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, no critters for me. If it has a gentle face I can't eat it. I have had alligator before, but they're not pretty.
I believe I have more than one process going on and this is making things difficult. Menopause and LC seem such a cruel combination. One of the nurses I work with quit his job this week. His reasoning was that the building was making him sick. He said he'd spend his first two days off work recovering from allergies from being in the building, have one good day and then return to work where the process would begin again. I believe this is happening to me, too. Another woman broke out in a horrible rash on her arms and face. She couldn't relate it to anything she'd been exposed to. She had to go on prednisone. She really looked awful with such a swollen face. I don't believe the building is effecting me as bad as it did those two, but most of us complain of D if we drink the water, and most of us are also thirsty with dry chapped lips, and there are complaints of itching, too.
The point is I think it's going to be a challenge for me because of these three conditions: allergies, food sensitivities, and hormonal changes. Still, it's doable. I'll just have to keep addressing the issues one at a time until I see improvement. A big thing for me is hope. I don't want to start thinking I have to live my life with limitations like I was before I was diagnosed.
I believe I have more than one process going on and this is making things difficult. Menopause and LC seem such a cruel combination. One of the nurses I work with quit his job this week. His reasoning was that the building was making him sick. He said he'd spend his first two days off work recovering from allergies from being in the building, have one good day and then return to work where the process would begin again. I believe this is happening to me, too. Another woman broke out in a horrible rash on her arms and face. She couldn't relate it to anything she'd been exposed to. She had to go on prednisone. She really looked awful with such a swollen face. I don't believe the building is effecting me as bad as it did those two, but most of us complain of D if we drink the water, and most of us are also thirsty with dry chapped lips, and there are complaints of itching, too.
The point is I think it's going to be a challenge for me because of these three conditions: allergies, food sensitivities, and hormonal changes. Still, it's doable. I'll just have to keep addressing the issues one at a time until I see improvement. A big thing for me is hope. I don't want to start thinking I have to live my life with limitations like I was before I was diagnosed.
You're probably right about all those issues complicating your recovery. None of them help, that's for sure.
But after we wrestle our life back from the disease, one of the big benefits of discovering that we have learned how to control our symptoms is the huge boost it gives to our self confidence. We tend to feel lost, alone, and hopeless when the disease is at it's worst, but after we recover, and the fog and fatigue fades away, we feel exhilarated and empowered, with a new lease on life.
Tex
But after we wrestle our life back from the disease, one of the big benefits of discovering that we have learned how to control our symptoms is the huge boost it gives to our self confidence. We tend to feel lost, alone, and hopeless when the disease is at it's worst, but after we recover, and the fog and fatigue fades away, we feel exhilarated and empowered, with a new lease on life.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
based on your reaction to the lunch room, and now the feedback from co-workers. the demand on your body by the inflammation from the toxins (mould etc) is not allowing the gut and other areas to heal.
you definately need the Vit D3 and magnesium....
one item that may help both the MC and the toxin issue is cholestraymine
some previous discussions posts that seem very relevant for your situation
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21947
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21446
you definately need the Vit D3 and magnesium....
one item that may help both the MC and the toxin issue is cholestraymine
some previous discussions posts that seem very relevant for your situation
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21947
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21446
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I got my lab results back today and my magnesium level is normal at 1.9. I expressed my concern to my GI about the reliability of the test but she assured me that they do them often and they're pretty reflective of the patient's condition. Anyway, mine isn't critically low so if I have to go on Entocort I feel a bit better about it. On a really pleasant note, I quit taking the magnesium supplement and using the spray and I haven't had D since. Maybe my system needs it but isn't healthy enough to take it yet.
So, I am D free and on no medications other than a BP med. My BP is normal now and I hope to go off of that as I become more active and lose some weight.
A new lease on life sounds good. I must admit I have a greater sense of gratitude. All these people wanting to hit the lottery and I just want a poop easy day. Ha.
I appreciate the continued support. I love all of your articles, Gabes. I keep reading them and feel comforted knowing there are more and more options and areas to explore if one of them doesn't work out for me.
So, I am D free and on no medications other than a BP med. My BP is normal now and I hope to go off of that as I become more active and lose some weight.
A new lease on life sounds good. I must admit I have a greater sense of gratitude. All these people wanting to hit the lottery and I just want a poop easy day. Ha.
I appreciate the continued support. I love all of your articles, Gabes. I keep reading them and feel comforted knowing there are more and more options and areas to explore if one of them doesn't work out for me.
