Hello everyone -
I last posted sometime in February I think. I've had this damn disease for over 15 years probably and I really have never gotten a good hold of it. I have bad times and good times it seems... and it never really follows any pattern. I have a 6 month old daughter and my theory is the latest hormone fluctuations have really thrown my system out of whack. Anywho, last I posted I had just gotten my enterolab results back and OF COURSE I reacted to everything. That was very overwhelming for me because you see I feel like I don't really have the time or energy to home cook and prepare all my own food. I am currently being a stay-at -home mother and it turns out it is A LOT of work taking care of an infant. I used to work full-time as a Veterinarian but haven't gone back to work because of the MC really taking its toll on me. This is all just so depressing:(
Anyways, after my last post I went to see a naturopath (because that's what happens when you're at your wits end). She of course was convinced that I had SIBO and so I played along and took the breath test. It was negative. She wanted me to start on digestive enzymes and low dose naltrexone, along with the Specific carbohydrate diet. I started all of this. The digestive enzymes were able to help get my acid reflux under control and I weaned off the Pepcid. I haven't increased my dose of LDN above 1.5 because when I do I get insomnia and I just can't afford to lose more sleep right now (my infant interferes with my sleep enough). The SCD diet was TOUGH for me because I always felt like I was starving and not getting enough food, and I only continued to lose weight on this diet. I CANNOT afford to lose anymore weight. I am 5 '6" and 105 pounds and I felt like to SCD diet was only making me lose weight. Plus, it allows for dairy and I can't do dairy. BUT- my gut did start to improve on this diet (or was it the LDN? Who knows). I ended up sticking with a sort of modified paleo approach in that I still eat rice and quinoa because I need something to help with calories and weight. I am still partially breastfeeding my daughter as well so that probably isn't helping with the weight issue. I should probably just entirely wean her but that is easier said than done. I am currently on 3 mg of Budesonide daily and have been for a few weeks. Also take Claritin daily since it is prime pollen season here. And levothyroxine for my Hashi's.
Anyways, long story short. I was FINALLY starting to feel better with my modified paleo approach. I had a couple of weeks of feeling good (which I haven't had in a long while). Fatigue had lifted, almost a week of normans, etc. I had actually gained a couple of pounds (which is huge for me), and then BAM we are back at square one again. Here is my theory: I took a couple of advil for a horrible headache last weekend. Then I accidentally ingested some corn in this stupid cereal that I had bought assuming it was safe. After I had taken a few bites I realized the corn problem. Corn was one of my #3 on enterolab. Within a few minutes of consuming this cereal I started to get stomach /gut pains. Like burning in my stomach....weird. I also had a couple of nights of bad sleep and some stress (which seems to be the constant theme lately), and that just added fuel to the fire. The diarrhea has returned but what is even more distressing is the epigastric pain that I am having. It is constant and feels like really strong hunger pains but it isn't resolved with eating. And the feeling like I need to vomit sometimes. My appetite is crap once again. And I've already lost the 2 pounds that I had gained!! I worked so damn hard for that too!
So I sit here, deflated, crying, depressed etc. I feel like I put SO much work into everything over the last 2 months only to have it all come crumbling down. My poor husband is very supportive but I think he is getting tired of not being able to do things like we used to (go out, eat, drink,etc.). I feel guilty for not having enough energy to play with my 6 month old daughter. I know that she is the only kid we will have (because we agreed that MC would make it impossible to ever be able to care for more than 1 child.... stupid freakin' disease). I just want my old life and old self back. I want to be able to LIVE again. I started to wonder if maybe I needed an antidepressant and then remembered that those are contraindicated for MC....so I will just have to deal. When I was diagnosed (long time ago) I was on both PPI and SSRI. Ha! I was just asking for it. Little did I know then.
So here are my actual questions, now that my rant is sort of over: 1) Has anyone else had constant epigastric pain? I wonder if it is severe gastritis from my entire GI tract being inflamed? I took a pepcid and it didn't help. I am not allowed to take pepto because I am breastfeeding still somewhat. My GI doc wants to do another upper endoscopy so maybe I will finally have this done.
2) I am convinced that hormones play a role in this. Postpartum your body goes from having sky high levels of estrogen to near zero levels with breastfeeding. When I was on birth control (the pill), I seemed to have less flare -ups. And pregnancy was like a vacation from this disease. Would it be a bad idea to go back on the pill for my birth control method? Obviously I would have to stop breastfeeding... which isnt ideal but she is almost 7 months and healthy as a horse. Is birth control one of the meds associated with MC?
3) Cholestyramine - thinking about trying this too. I had my gallbladder out at 18 (I've been a mess since forever) and feel as if I sometimes have BAD - it is greenish yellow and burns....sorry if TMI. People have had some success with this I'm assuming. But it probably doesn't do anything for the actual inflammation, right?
4) In the past when I would get flare-ups I would just get diarrhea and mild fatigue. Now for some reason I get diarrhea, severe fatigue, epigastric pain, muscle crapms in legs (don't worry I have my spray on magnesium and D3) and lack of appetite. What is that all about?
5) My hair is falling out like crazy. I realize that postpartum this is normal, but I can't help but feel that MC is playing a role in this as well. It's not falling out in clumps but rather just shedding a lot. I swear the hormone shifts postpartum are enough to make a person go crazy...remember to be nice to new moms.
Sorry for the novel....I am just so completely devastated by this condition. My GI doc is pretty clueless as are all of them. My naturopath seems to kind of know what she is talking about. I have another appt with her this next week so we will see. In the meantime I need to figure out how to take care of myself and cook myself some safe foods. Oh, and take care of an infant which is a full time job!!
So thankful for this forum and to know that there are other people out there like me! Tex I've read your book and it's amazing... may need to read it again. Both my brother and father also have MC but they have it "mild" compared to me. So obviously genetics is involved in this. Any input would be appreciated.
Katie aka "constant d"
Ugh....just when I started to think I was improving.
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Katie,
I'm sorry that so many things have gone wrong and you can't seem to get back on track. Yes, unfortunately hormonal changes associated with pregnancy and lactation can have a huge effect on MC. And yes, most contraceptives can prevent remission of MC symptoms in many cases, even when administered transdermally.
If the Pepcid didn't help the chest pain, that sort of rules out GERD/heartburn. Have you considered costochondritis? That is the only issue I can think of that fits the symptoms and would cause constant pain in that area.
If I recall correctly, BAD is claimed to be the cause of D in roughly 40 % of MC cases. It can trump otherwise effective treatments. It costs little to try a bile acid sequestrant (IOW, there's little risk of it causing other problems), and your lack of a gallbladder could certainly exacerbate the problem, so it's probably worth a try. Be sure that you don't use the "Lite" version of Questran, because I believe it's said to contain casein or a similar allergen. You may have to experiment with the dose.
It takes a long time (and a lot of magnesium) to resolve a magnesium deficiency. Some of the symptoms you mentioned suggest that you are seriously magnesium deficient. Your lack of appetite for example — when I had the acute magnesium deficiency reaction and finally decided to go to the ER, it was because in addition to feeling rough, I suddenly lost my appetite and I couldn't persuade myself to even eat breakfast. And a magnesium deficiency definitely causes fatigue, muscle pain and cramps, and hair loss. My hair was shedding like mad also, but it didn't even dawn on me at the time that it could be due to a magnesium deficiency. According to some authorities, not only can a magnesium deficiency cause scalp hair loss, but in women it can mess up hormone production sufficiently to cause an increase in testosterone, resulting in the growth of facial hair.
I doubt this is the cause of the "eopigastric" pain you are experiencing, but it's even possible that the pain could be your heart, starving for magnesium. The heart is a muscle, and it has to have adequate magnesium to function properly. If it runs out of magnesium, like all muscles it will contract. As I said though, I doubt that this is the case because if you are eating anything or taking any magnesium supplements then your magnesium level should wax and wane during the day, and crash during the night.
Thank you for the kind words about the book. I'm working on a second edition, but progress is slow. I hope that some of this is helpful.
Tex
I'm sorry that so many things have gone wrong and you can't seem to get back on track. Yes, unfortunately hormonal changes associated with pregnancy and lactation can have a huge effect on MC. And yes, most contraceptives can prevent remission of MC symptoms in many cases, even when administered transdermally.
If the Pepcid didn't help the chest pain, that sort of rules out GERD/heartburn. Have you considered costochondritis? That is the only issue I can think of that fits the symptoms and would cause constant pain in that area.
If I recall correctly, BAD is claimed to be the cause of D in roughly 40 % of MC cases. It can trump otherwise effective treatments. It costs little to try a bile acid sequestrant (IOW, there's little risk of it causing other problems), and your lack of a gallbladder could certainly exacerbate the problem, so it's probably worth a try. Be sure that you don't use the "Lite" version of Questran, because I believe it's said to contain casein or a similar allergen. You may have to experiment with the dose.
It takes a long time (and a lot of magnesium) to resolve a magnesium deficiency. Some of the symptoms you mentioned suggest that you are seriously magnesium deficient. Your lack of appetite for example — when I had the acute magnesium deficiency reaction and finally decided to go to the ER, it was because in addition to feeling rough, I suddenly lost my appetite and I couldn't persuade myself to even eat breakfast. And a magnesium deficiency definitely causes fatigue, muscle pain and cramps, and hair loss. My hair was shedding like mad also, but it didn't even dawn on me at the time that it could be due to a magnesium deficiency. According to some authorities, not only can a magnesium deficiency cause scalp hair loss, but in women it can mess up hormone production sufficiently to cause an increase in testosterone, resulting in the growth of facial hair.
I doubt this is the cause of the "eopigastric" pain you are experiencing, but it's even possible that the pain could be your heart, starving for magnesium. The heart is a muscle, and it has to have adequate magnesium to function properly. If it runs out of magnesium, like all muscles it will contract. As I said though, I doubt that this is the case because if you are eating anything or taking any magnesium supplements then your magnesium level should wax and wane during the day, and crash during the night.
Thank you for the kind words about the book. I'm working on a second edition, but progress is slow. I hope that some of this is helpful.
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.
Katie,
I'm so sorry that you have to go through all this, when you should be enjoying the baby in this wonderful period.
I remember back when I had given birth to my first one (I didn't have MC at that time), but I was constantly tired, exhausted and lost a lot of my hair. Our family doctor just took a look at me, and without any blood tests or even touching me he just said "You need vitamin B", and I had B12 injections every week for 3 months. Thus, I finally got my energy and my hair back, and I could enjoy being a mom.
B-vitamin deficiency is quite common in postpartum.
Lilja
PS: When my MC was really bad 1,5 years ago I started taking B12, B9 and B6. Together with diet changes, I'm convinced that this was the final step in the right direction
I'm so sorry that you have to go through all this, when you should be enjoying the baby in this wonderful period.
I remember back when I had given birth to my first one (I didn't have MC at that time), but I was constantly tired, exhausted and lost a lot of my hair. Our family doctor just took a look at me, and without any blood tests or even touching me he just said "You need vitamin B", and I had B12 injections every week for 3 months. Thus, I finally got my energy and my hair back, and I could enjoy being a mom.
B-vitamin deficiency is quite common in postpartum.
Lilja
PS: When my MC was really bad 1,5 years ago I started taking B12, B9 and B6. Together with diet changes, I'm convinced that this was the final step in the right direction
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Thank you for the quick replies! Interestingly enough my naturopath has me set up to get IV infusions of vitamins, minerals, etc. I've already received 2 infusions. They contain B vitamins, calcium, magnesium, and I'm sure other vitamins. The first one I received only confirmed my lack of magnesium. I went in with leg muscle pain/cramps and by the time the infusion was done they were gone. I mentioned this at the next appointment and they increased the amount of magnesium I received. I'm supposed to get them every 2 weeks. The last one I received the night before my big flare, so I'm hoping it didn't contribute to it. I use the magnesium topical spray and the leg muscle pain has decreased significantly. What B-vitamin supplements do you use? I know that I need the methylated forms due to my MTHFR mutation. I currently take the "Seeking Health" prenatal multivitamin which has methylated forms. But maybe I should try a sublingual form that would be less harsh on my tummy?
Costochondritis is certainly a possibility Tex. During pregnancy I definitely experienced that due to my daughter pushing my ribs out. I think just plain gastritis from eating that stupid corn accidentally is also a possibility. The last couple of times I had horrible epigastric pain I had also eaten corn. I think that I developed a severe corn allergy over the years because I also went for corn items when I was going gluten free (which started 10 years ago). I used to eat so much Mexican food for this reason. Now.... not so much
I think trying Cholestyramine wouldn't be a bad option; will bring this up at my next appointment. I just know you have to be careful about the timing of this drug since it will bind up other drugs. And eventually adding back in oral birth control is on my list too.
Hope everyone is enjoying their Sunday! It is supposed to be almost 80 degrees here in the Pacific Northwest.... and the pollen is out like crazy!
Costochondritis is certainly a possibility Tex. During pregnancy I definitely experienced that due to my daughter pushing my ribs out. I think just plain gastritis from eating that stupid corn accidentally is also a possibility. The last couple of times I had horrible epigastric pain I had also eaten corn. I think that I developed a severe corn allergy over the years because I also went for corn items when I was going gluten free (which started 10 years ago). I used to eat so much Mexican food for this reason. Now.... not so much
I think trying Cholestyramine wouldn't be a bad option; will bring this up at my next appointment. I just know you have to be careful about the timing of this drug since it will bind up other drugs. And eventually adding back in oral birth control is on my list too.
Hope everyone is enjoying their Sunday! It is supposed to be almost 80 degrees here in the Pacific Northwest.... and the pollen is out like crazy!
Katie,
Here is a copy of what Tex adviced in December 2014. He took Metanx, which was impossible to get in my country, so he calculated what I needed from the three Bvitamins in order to copy the ingredients of Metanx:
Jarrow: Methylcobalamin B-12, 1000 mcg
For this one (the methylcobalamin), you will need to take 2 each day.
CountryLife: P-5-P Pyridoxal 5' Phosphate (B-6) 50 mg
This is the same strength as the one that I used, so you will need to take 1 capsule per day, 2 days in a row, then skip the 3rd day, then start over. IOW, this will amount to 2 capsules every 3 days, in order to average out at 33 mg per day.
Jarrow: Folate Methyl 400 mcg
(6S)-5-methyltetrahydrofolic acid glucosamine salt is the equivalent of L-methylfolate calcium, so for this one (Jarrow Methyl Folate), you would need to take 7 capsules one day, and 8 capsules the next day (for an average of 7.5 capsules per day), if you want to be exact. It probably wouldn't matter whether you took 7 or 8 capsules (the same every day), because either one is close enough to a total of 3,000 mcg (3 mg) per day. 7 would add up to 2,800 mcg, and 8 would add up to 3,200 mcg.
Tex
Lilja
Here is a copy of what Tex adviced in December 2014. He took Metanx, which was impossible to get in my country, so he calculated what I needed from the three Bvitamins in order to copy the ingredients of Metanx:
Jarrow: Methylcobalamin B-12, 1000 mcg
For this one (the methylcobalamin), you will need to take 2 each day.
CountryLife: P-5-P Pyridoxal 5' Phosphate (B-6) 50 mg
This is the same strength as the one that I used, so you will need to take 1 capsule per day, 2 days in a row, then skip the 3rd day, then start over. IOW, this will amount to 2 capsules every 3 days, in order to average out at 33 mg per day.
Jarrow: Folate Methyl 400 mcg
(6S)-5-methyltetrahydrofolic acid glucosamine salt is the equivalent of L-methylfolate calcium, so for this one (Jarrow Methyl Folate), you would need to take 7 capsules one day, and 8 capsules the next day (for an average of 7.5 capsules per day), if you want to be exact. It probably wouldn't matter whether you took 7 or 8 capsules (the same every day), because either one is close enough to a total of 3,000 mcg (3 mg) per day. 7 would add up to 2,800 mcg, and 8 would add up to 3,200 mcg.
Tex
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Katie,
I had included a comment in my post about asking your physician about IV magnesium infusions, but then I decided to remove it before posting the message. I'm glad to see that you're doing that though because it eliminates any guessing about whether or not you're absorbing any magnesium.
Lilja is correct, I take Metanx to treat peripheral neuropathy. My previous PCP took it for it's brain-enhancing cognizance and anti-aging benefits. It was originally developed as a prescription "medical food" (I believe that's what they call it) to treat peripheral neuropathy associated with diabetes, and it's also prescribed to treat endothelial dysfunction.
Here in the U. S. we have a few more options than Lilja has in Norway, so here's the substitution I use for the methylfolate:
Life Extension brand of Optimized Folate (L-methylfolate), 1,000 mcg. Inert ingredients are: mirocrystaline cellulose, vegetable cellulose (capsule), silica, vegetable stearate. The label specifically names all of the common allergens (including milk, eggs, soy, wheat, yeast, nuts, corn, rice, etc.), and the product is certified to be free of all of them.
To match the dose in Metanx, take 3 capsules each day.
All of these substitutions approximate 1 Metanx capsule. The label on Metanx says that either 1 or 2 capsules can be used daily, so you can double these doses if you want. But if you double 1, be sure to double them all, in order to keep the ratio in balance. I have always used 1 capsule, but I have been taking it for almost 7 years now. Metanx is not cheap and it's available by prescription only, but it's much more convenient to take a single capsule each day rather than taking 5 or 6. And of course you can save half the cost of Metanx by using the OTC substitutions.
The Metanx website no longer appears to list the inactive ingredients of Metanx, but according to Dr. Ben Lynch's site (MTHFR blog), those ingredients are:
Dibasic Calcium Phosphate Dihydrate, Microcrystalline Cellulose 90, Microcrystalline Cellulose HD 90, Pyridoxal-5´-Phosphate, Opadry II Purple 40L10045 (Polydextrose, Titanium Dioxide, Hypromellose 3cP, Hypromellose 6cP, Glycerol Triacetate, Hypromellose 50cP, FD&C Blue #2, FD&C Red #40, Polyglycol 800), Microcrystalline Cellulose 50, Opadry II Clear Y-19-7483 (Hypromellose 6cP, Maltodextrin, Hypromellose 3cP, Polyglycol 400, Hypromellose 50cP), Lmethylfolate Calcium, Magnesium Stearate, Methylcobalamin, and Carnauba Wax.
Comparison of Homocysteine Support Products
Of course I have no way of knowing if this list is up to date.
Tex
I had included a comment in my post about asking your physician about IV magnesium infusions, but then I decided to remove it before posting the message. I'm glad to see that you're doing that though because it eliminates any guessing about whether or not you're absorbing any magnesium.
Lilja is correct, I take Metanx to treat peripheral neuropathy. My previous PCP took it for it's brain-enhancing cognizance and anti-aging benefits. It was originally developed as a prescription "medical food" (I believe that's what they call it) to treat peripheral neuropathy associated with diabetes, and it's also prescribed to treat endothelial dysfunction.
Here in the U. S. we have a few more options than Lilja has in Norway, so here's the substitution I use for the methylfolate:
Life Extension brand of Optimized Folate (L-methylfolate), 1,000 mcg. Inert ingredients are: mirocrystaline cellulose, vegetable cellulose (capsule), silica, vegetable stearate. The label specifically names all of the common allergens (including milk, eggs, soy, wheat, yeast, nuts, corn, rice, etc.), and the product is certified to be free of all of them.
To match the dose in Metanx, take 3 capsules each day.
All of these substitutions approximate 1 Metanx capsule. The label on Metanx says that either 1 or 2 capsules can be used daily, so you can double these doses if you want. But if you double 1, be sure to double them all, in order to keep the ratio in balance. I have always used 1 capsule, but I have been taking it for almost 7 years now. Metanx is not cheap and it's available by prescription only, but it's much more convenient to take a single capsule each day rather than taking 5 or 6. And of course you can save half the cost of Metanx by using the OTC substitutions.
The Metanx website no longer appears to list the inactive ingredients of Metanx, but according to Dr. Ben Lynch's site (MTHFR blog), those ingredients are:
Dibasic Calcium Phosphate Dihydrate, Microcrystalline Cellulose 90, Microcrystalline Cellulose HD 90, Pyridoxal-5´-Phosphate, Opadry II Purple 40L10045 (Polydextrose, Titanium Dioxide, Hypromellose 3cP, Hypromellose 6cP, Glycerol Triacetate, Hypromellose 50cP, FD&C Blue #2, FD&C Red #40, Polyglycol 800), Microcrystalline Cellulose 50, Opadry II Clear Y-19-7483 (Hypromellose 6cP, Maltodextrin, Hypromellose 3cP, Polyglycol 400, Hypromellose 50cP), Lmethylfolate Calcium, Magnesium Stearate, Methylcobalamin, and Carnauba Wax.
Comparison of Homocysteine Support Products
Of course I have no way of knowing if this list is up to date.
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
Sorry that you had a major setback
I agree with what has been posted above, active B's and magnesium will assist with alot of your symptoms.
the other thing it would be interesting to check is your Zinc level, zinc deficiency is frequently linked to hair loss post baby/breast feeding
Zinc and Vit D will also help with the mental and emotional aspects of what you are coping with.
Please do not do any major zinc supplementation without checking levels via blood test first.
as I type this, my other thought is iodine, might be worth getting iodine levels checked via urine test.
I agree with what has been posted above, active B's and magnesium will assist with alot of your symptoms.
the other thing it would be interesting to check is your Zinc level, zinc deficiency is frequently linked to hair loss post baby/breast feeding
Zinc and Vit D will also help with the mental and emotional aspects of what you are coping with.
Please do not do any major zinc supplementation without checking levels via blood test first.
as I type this, my other thought is iodine, might be worth getting iodine levels checked via urine test.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Katie,
Just want to add my support along to you too.
I agree with all the wonderful advice given, I live in the PNW and last weekend the pollen and being outdoors set off a really crazy allergen attack that resembled a cold later in the week. Long story short, my MC went into a flare and it is taking me lots of baby steps to get it calmed down, it still isn't a happy camper yet, my nose isn't dripping anymore and I must have used up all my magnesium reserves dealing with the symptoms of this attack because my arch in my right foot cramped last night and it hurt sooo bad! So I got back on the supplement band wagon today and sprayed my mag oil, took my Drs. Best and tonight I rubbed some mag lotion on the bottom of my feet. Whew....
All in all I find the B's, Zinc, Mag and VitD are what is helping me to maintain some energy....I completely understand where you are coming from needing to find that extra bit of energy
I hope you find the right combo of foods (as bland as they may be right now), and remember stress will keep MC in a perpetual merry-go-round never letting you get off....so try to find some down time when you can.
Enjoy that little one, and find the small things that are a joy to be a parent
Hugs
Erica
Just want to add my support along to you too.
I agree with all the wonderful advice given, I live in the PNW and last weekend the pollen and being outdoors set off a really crazy allergen attack that resembled a cold later in the week. Long story short, my MC went into a flare and it is taking me lots of baby steps to get it calmed down, it still isn't a happy camper yet, my nose isn't dripping anymore and I must have used up all my magnesium reserves dealing with the symptoms of this attack because my arch in my right foot cramped last night and it hurt sooo bad! So I got back on the supplement band wagon today and sprayed my mag oil, took my Drs. Best and tonight I rubbed some mag lotion on the bottom of my feet. Whew....
All in all I find the B's, Zinc, Mag and VitD are what is helping me to maintain some energy....I completely understand where you are coming from needing to find that extra bit of energy
I hope you find the right combo of foods (as bland as they may be right now), and remember stress will keep MC in a perpetual merry-go-round never letting you get off....so try to find some down time when you can.
Enjoy that little one, and find the small things that are a joy to be a parent
Hugs
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
thank you all for your input! Erica I'm sure you understand how crazy the pollen has been seeing as you live in Washington! Gabes I will be sure and ask my naturopath about checking all my vitamin levels such as zinc, vitamin D, etc. And Tex I will indeed look into trying the active B vitamins you mentioned. I will have to be careful though because I think my main issue is corn and a lot of supplements have corn additives.
I have a few more questions though because I just got off the phone with my GI doc to report about how my symptoms have resurfaced again. He's actually quite a nice guy and spends 30 minutes or so talking with me every time I put a call in. Plus, he is always open to trying anything that I bring up. We talked about the SCD diet and how it seemed to help me and then once I started adding things back in I got sick again. He mentioned that he has seen this with a lot of his Crohn's patients, etc. We also talked about how my ND put me on LDN (although I still haven't gotten brave enough to increase past the 1.5 mg), and how he has issued this to a few of his Crohn's patients and they seem to do well on it. We also talked about Cholestyramine and giving this a try since my diarrhea is always worst in the morning after being fasted and having eaten breakfast. And last but not least we talked about doing another upper endoscopy and possibly colonoscopy soon. My upper endoscopy from 2011 shows lymphocytes throughout the small intestine (but not in the stomach). He says this is a weird presentation of MC, but I'm pretty sure I recall that other members on this board have had lymphocytic infiltrates in their duodenum, etc.... am I right Tex? How frequently do the members on here have this phenomenon? Or am I the only one? I also mentioned to him that my dad and little brother are coincidentally having upper endoscopies and colonoscopies because we all seem to be having trouble lately with our symptoms and are inability to gain weight. His take on this was that it sure is starting to sound more and more like Crohn's disease and this FREAKED me out. I do not want to have Crohn's... obviously. He also mentioned using azathioprine, aka Immuran, which also scares the crap out of me. We occasionally use this drug in Vet Med and it should not be taken lightly. Apparently he has used it with great success in what he calls his patients with "refractory celiac sprue." Not sure what this means but apparently they couldn't get their symptoms under control with diet alone... and he claims he didn't want them on budesonide long term but that Immuran was ok? That confuses me.
Couple of other questions (sorry for all the damn questions): Immuran is an immunosuppressive drug, whereas the budesonide is just a corticosteroid used at an anti-inflammatory dose. Granted, any corticosteroid used at a high enough dose can be considered immunosuppressive. So, what do we need with this damn disease?? Immunosuppression or just anti-inflammatory doses? Have people on this board had to go on Immuran? And was it successful for them?
I brought up pregnancy to him and that I felt fairly good for that. He responded with how you often see this with any autoimmune disease due to the body trying to not harm the fetus, which makes sense. So then I asked him if going back on birth control would be a good idea (since essentially birth control is re-creating pregnancy with synthetic estrogen and progesterone and tricking the body into not ovulating since it thinks you are already pregnant), and he replied with "dunno."
So essentially our conversation ended with potentially setting up an appointment for another upper endoscopy along with calling in an Rx for Questran or Cholestyramine. I pretty much admitted to him that at this point I am willing to try anything, that I just want my life back. Budesonide works somewhat (doesn't entirely eliminate my symptoms) but every time I try and wean off the symptoms just come right back. Currently I am on 3 mg and have been taking the drug since January. He doesn't really want me on the budesonide much longer.
One last thought: has anybody here ever been checked for EPI (exocrine pacreatic insufficiency?) We see this a lot in Vet Med with dogs that have chronic diarrhea and weight loss. And the best part is: the fix is simple!! Just add enzymes. I know that this isn't the answer but it sure would be nice.
Once again thank you all for your input. I've been so stringent in my diet (except for the corn incident), that I just get so down when that doesn't work. I will let you all know if anything new comes up.
Katie
I have a few more questions though because I just got off the phone with my GI doc to report about how my symptoms have resurfaced again. He's actually quite a nice guy and spends 30 minutes or so talking with me every time I put a call in. Plus, he is always open to trying anything that I bring up. We talked about the SCD diet and how it seemed to help me and then once I started adding things back in I got sick again. He mentioned that he has seen this with a lot of his Crohn's patients, etc. We also talked about how my ND put me on LDN (although I still haven't gotten brave enough to increase past the 1.5 mg), and how he has issued this to a few of his Crohn's patients and they seem to do well on it. We also talked about Cholestyramine and giving this a try since my diarrhea is always worst in the morning after being fasted and having eaten breakfast. And last but not least we talked about doing another upper endoscopy and possibly colonoscopy soon. My upper endoscopy from 2011 shows lymphocytes throughout the small intestine (but not in the stomach). He says this is a weird presentation of MC, but I'm pretty sure I recall that other members on this board have had lymphocytic infiltrates in their duodenum, etc.... am I right Tex? How frequently do the members on here have this phenomenon? Or am I the only one? I also mentioned to him that my dad and little brother are coincidentally having upper endoscopies and colonoscopies because we all seem to be having trouble lately with our symptoms and are inability to gain weight. His take on this was that it sure is starting to sound more and more like Crohn's disease and this FREAKED me out. I do not want to have Crohn's... obviously. He also mentioned using azathioprine, aka Immuran, which also scares the crap out of me. We occasionally use this drug in Vet Med and it should not be taken lightly. Apparently he has used it with great success in what he calls his patients with "refractory celiac sprue." Not sure what this means but apparently they couldn't get their symptoms under control with diet alone... and he claims he didn't want them on budesonide long term but that Immuran was ok? That confuses me.
Couple of other questions (sorry for all the damn questions): Immuran is an immunosuppressive drug, whereas the budesonide is just a corticosteroid used at an anti-inflammatory dose. Granted, any corticosteroid used at a high enough dose can be considered immunosuppressive. So, what do we need with this damn disease?? Immunosuppression or just anti-inflammatory doses? Have people on this board had to go on Immuran? And was it successful for them?
I brought up pregnancy to him and that I felt fairly good for that. He responded with how you often see this with any autoimmune disease due to the body trying to not harm the fetus, which makes sense. So then I asked him if going back on birth control would be a good idea (since essentially birth control is re-creating pregnancy with synthetic estrogen and progesterone and tricking the body into not ovulating since it thinks you are already pregnant), and he replied with "dunno."
So essentially our conversation ended with potentially setting up an appointment for another upper endoscopy along with calling in an Rx for Questran or Cholestyramine. I pretty much admitted to him that at this point I am willing to try anything, that I just want my life back. Budesonide works somewhat (doesn't entirely eliminate my symptoms) but every time I try and wean off the symptoms just come right back. Currently I am on 3 mg and have been taking the drug since January. He doesn't really want me on the budesonide much longer.
One last thought: has anybody here ever been checked for EPI (exocrine pacreatic insufficiency?) We see this a lot in Vet Med with dogs that have chronic diarrhea and weight loss. And the best part is: the fix is simple!! Just add enzymes. I know that this isn't the answer but it sure would be nice.
Once again thank you all for your input. I've been so stringent in my diet (except for the corn incident), that I just get so down when that doesn't work. I will let you all know if anything new comes up.
Katie
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I recall a few people that took immuran - you may need to do a search to find previous discussions and users.
long story short, no medication can resolve the issues totally long term per say.. for the body to heal, cope with inflammation you need the right nutrients in your cells. from memory immuran can be harsh on kidney or liver, and when using it, you need regular monitoring. (and most medications deplete magnesium)
the Questran/Cholestyramine is a good option - many have seen benefit - keeping in mind there are some, that it didnt work for. the only way to know is trial and error.
so far as birth control, again that is a very personal thing. not trying to overwhelm you, but if you start the questran/cholestyramine if using oral birth control, you will have to have it a few hours away from the questran.
if you do have some nutrient deficiencies like zinc and magnesium, most forms of contraception, oral, implant, iud etc all deplete these minerals.
the hard part of all of this, there is no black and white solution, no easy way to test and confirm what the issues are.
and if you do have deficiencies, it can take 8 weeks or so to resolve mild deficiency. Longer if the levels are quite low...
hope this helps
long story short, no medication can resolve the issues totally long term per say.. for the body to heal, cope with inflammation you need the right nutrients in your cells. from memory immuran can be harsh on kidney or liver, and when using it, you need regular monitoring. (and most medications deplete magnesium)
the Questran/Cholestyramine is a good option - many have seen benefit - keeping in mind there are some, that it didnt work for. the only way to know is trial and error.
so far as birth control, again that is a very personal thing. not trying to overwhelm you, but if you start the questran/cholestyramine if using oral birth control, you will have to have it a few hours away from the questran.
if you do have some nutrient deficiencies like zinc and magnesium, most forms of contraception, oral, implant, iud etc all deplete these minerals.
the hard part of all of this, there is no black and white solution, no easy way to test and confirm what the issues are.
and if you do have deficiencies, it can take 8 weeks or so to resolve mild deficiency. Longer if the levels are quite low...
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
It's very common. Most physicians are unaware of this though, because it isn't part of the official description of the disease (the disease was originally incorrectly described). So virtually all gastroenterologists will insist that it would be atypical for the markers of MC to appear in the small intestine. It's not, it's actually typical. Remember though that in most cases, even if biopsy samples are taken from areas of the small intestine, gastroenterologists are not likely to point out elevated lymphocyte counts to their patients, even if that information is in the pathology report. Patients usually have to examine the pathology reports themselves in order to find this information. From page 112 of the book:Katie wrote:My upper endoscopy from 2011 shows lymphocytes throughout the small intestine (but not in the stomach). He says this is a weird presentation of MC, but I'm pretty sure I recall that other members on this board have had lymphocytic infiltrates in their duodenum, etc.... am I right Tex? How frequently do the members on here have this phenomenon? Or am I the only one?
Here are references 16–19 from that quote:In fact, small intestinal involvement is quite common with MC.16 Other researchers have noted that the T helper cell type 1 mucosal cytokine response pattern exhibited by microscopic colitis is very similar to the response pattern of celiac disease.17 Most researchers have been unsure how to classify this type of information, since it implies non-celiac gluten sensitivity.18 Often, biopsy samples of the terminal ileum are taken during a colonoscopy exam, and upon examination under a microscope, those samples typically show lymphocytic infiltration for most patients who have MC.19
Koskela (2011) even noted that in general, the duodenum of patients with MC, excluding any patients who have celiac disease, have shorter villi than controls.19
16. Moayyedi, P., O'Mahony, S., Jackson, P., Lynch, D. A., Dixon, M. F., & Axon, A. T. (1997). Small intestine in lymphocytic and collagenous colitis: mucosal morphology, permeability, and secretory immunity to gliadin. Journal of Clinical Pathology, 50(6), 527–529. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC500002/
17. Tagkalidis, P. P., Gibson, P. R., & Bhathal, P. S. (2007). Microscopic colitis demonstrates a T helper cell type 1 mucosal cytokine profile. Journal of Clinical Pathology, 60(4), 382–387. doi:10.1136/jcp.2005.036376
18. Vande Voort, J. L., Murray, J. A., Lahr, B. D., Van Dyke, C. T., Kroning, C. M., Moore, B., & Wu, T-T. (2009). Lymphocytic duodenosis and the spectrum of celiac disease. American Journal of Gastroenterology, 104(1), 142–148. doi:10.1038/ajg.2008.7
19. Koskela, R. (2011). Microscopic colitis: Clinical features and gastroduodenal and immunogenic findings. (Doctoral dissertation, University of Oulu). Retrieved from http://herkules.oulu.fi/isbn97895142941 ... 294150.pdf
My guess is that many celiac patients who have "refractory celiac sprue" actually either have MC or they have additional food sensitivities that prevent a simple GF diet from eliminating the inflammation. And I recall seeing a research article that concluded that over half of "refractory celiac sprue" cases are due to diets that are either accidentally or intentionally contaminated by gluten. Many patients "think" that they are following a GF diet when in fact they are not, simply because of oversights or lack of attention to details.
You're right — recent research shows that long-term use of budesonide at low rates is not nearly as risky as most gastroenterologists believe. And I'm with you on the Immuran. It helps, though it typically does not provide complete control, but I tend to think of it as an accident waiting to happen. Suppressing the immune system should only be done if there are no other alternatives, IMO. Sooner or later, most people need their immune system to save their hide. Am I wrong, or are most of the fatalities that have been reported in the news in recent years regarding infections by listeria and other bacteria in ice cream and on vegetables, directly attributable to suppressed immune systems. Most healthy immune systems should shrug off such infections (and they do).Katie wrote:and he claims he didn't want them on budesonide long term but that Immuran was ok? That confuses me.
No one has "had" to use Immuran. One member took it for a while because he also had Crohn's disease, but then he developed myasthenia gravis, so he moved on to a more power immune system suppressant. A couple of other members are using it because they preferred to be able to cheat on their diet now and then. According to their posts, it appears that they still have to be mostly diet-compliant, but they can cheat a little now and then without going into a full flare. At least that's the impression that I get from reading their posts. For example, if they like to eat out, Immuran can serve as an insurance policy to cover any traces of cross-contamination that might show up in their meal.Katie wrote:Have people on this board had to go on Immuran? And was it successful for them?
Katie wrote:Budesonide works somewhat (doesn't entirely eliminate my symptoms) but every time I try and wean off the symptoms just come right back. Currently I am on 3 mg and have been taking the drug since January. He doesn't really want me on the budesonide much longer.
Show him this research article:
Conclusions Budesonide at a mean dose of 4.5 mg/day maintained clinical remission for at least 1 year in the majority of patients with collagenous colitis and preserved health-related quality of life without safety concerns. Treatment extension with low-dose budesonide beyond 1 year may be beneficial given the high relapse rate after budesonide discontinuation.
Low-dose budesonide for maintenance of clinical remission in collagenous colitis: a randomised, placebo-controlled, 12-month trial
A lot of us have pancreatic insufficiency when MC is active for extended periods because it's not uncommon for any organ in the digestive system to become inflamed as the inflammation spreads. The pancreatitis resolves as the MC symptoms are brought under control. Of course this is another item that isn't even on the radar of most gastroenterologists (because it's not part of the official description of CC/LC/MC).Katie wrote:One last thought: has anybody here ever been checked for EPI (exocrine pacreatic insufficiency?) We see this a lot in Vet Med with dogs that have chronic diarrhea and weight loss. And the best part is: the fix is simple!! Just add enzymes. I know that this isn't the answer but it sure would be nice.
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.
Katie,
Hope you are still doing better! Have you ever tried protein shakes? I drink Natural Factors vegan with vanilla. Its on iherb.com. it's about 18 bucks and in stores it's 30 bucks. It really helped me put some weight back on, which is needed for breast feeding.
I have breastfed for 6 years of my life (3 children). I had my last child after the "life-changing antibiotic" that caused my MC. Needless to say I didn't leave my recliner due to breastfeeding, sickness, and tiredness. I breastfed my last child for 3 years. I stayed sick with everything going around. I really think if I took d3 and mag it would have been a lot better. I noticed you mentioned you were taking both....
Hope you are still doing better! Have you ever tried protein shakes? I drink Natural Factors vegan with vanilla. Its on iherb.com. it's about 18 bucks and in stores it's 30 bucks. It really helped me put some weight back on, which is needed for breast feeding.
I have breastfed for 6 years of my life (3 children). I had my last child after the "life-changing antibiotic" that caused my MC. Needless to say I didn't leave my recliner due to breastfeeding, sickness, and tiredness. I breastfed my last child for 3 years. I stayed sick with everything going around. I really think if I took d3 and mag it would have been a lot better. I noticed you mentioned you were taking both....
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
Thank you everyone for your advice! I do not think I will be going on Immuran anytime soon....it is just too risky of a drug. We will see what my upcoming colonoscopy and endoscopy show. I'm guessing it will probably be the same thing with lymphocytic infiltrates everywhere (and hopefully not crohn's). My bowel movements have gotten better in the last couple of days (aka only 3 loose bowel movements this AM), but the upper GI/epigastric/stomach pain still continues. Weird.
After talking with my ND yesterday she thought cholestyramine might not be great but only because of my current malnourished state and low BMI. She mentioned that Cholestyramine will often bind up other important nutrients such as fat soluble vitamins like D, K, etc., and that this is the last thing I need. I tend to agree with her. If anything I think trying a small amount at night before bed would be the best option because I don't take any supplements nor eat right before bed. Any thoughts on this? Additionally, I read the insert for the Cholestyramine and MAN there are a lot of nasty ingredients in that powder. Tons of additives and food coloring, etc. Blech.
The other thing she wanted me to start on was a supplement called Vital Nutrients BCQ (if I remember correctly). Apparently it has curcumin, bromelain, and some other natural anti-inflammatories in it. I am VERY HESITANT to start this only because I feel like turmeric is just asking for trouble, right? Wouldn't that be like pouring spices into my intestines? Doesn't sound like the best idea to me. And of course she recommended a probiotic which is SCD friendly (she really pushes the SCD). I'm not against the SCD.... it did actually help me some. Essentially I do best without any grains BUT then I feel like I am starving and losing more weight. She also admitted that going back onto birth control may be a good idea because she tends to see a trend where patients with autoimmune conditions improve with pregnancy and/or birth control.
Martha, thank you for the idea of the protein powder. The only problem is that the one you suggested has pea protein in it. I am trying to stay away from peas and legumes, etc., since I react to soy. So I need to try and find one that has only rice protein. And good job to you for breastfeeding for 6 years of your life! I can't even imagine! I would literally wither away into nothing if I had to do that. Breastfeeding has been great but it has also been really hard on my body. My little one is getting a little bit of formula along with breastmilk at this point, and I am OK with that. She was exclusively BF for the first 6 months, so I met my initial goal at least!
One more question: Has anyone done the MRT testing? Any success with this? Is this legit?
Oh, and when I do get my colonoscopy, what is the special stain that I should ask for to look for mast cells?
Again, thank you all for you help. This online forum really is AWESOME and so helpful!
After talking with my ND yesterday she thought cholestyramine might not be great but only because of my current malnourished state and low BMI. She mentioned that Cholestyramine will often bind up other important nutrients such as fat soluble vitamins like D, K, etc., and that this is the last thing I need. I tend to agree with her. If anything I think trying a small amount at night before bed would be the best option because I don't take any supplements nor eat right before bed. Any thoughts on this? Additionally, I read the insert for the Cholestyramine and MAN there are a lot of nasty ingredients in that powder. Tons of additives and food coloring, etc. Blech.
The other thing she wanted me to start on was a supplement called Vital Nutrients BCQ (if I remember correctly). Apparently it has curcumin, bromelain, and some other natural anti-inflammatories in it. I am VERY HESITANT to start this only because I feel like turmeric is just asking for trouble, right? Wouldn't that be like pouring spices into my intestines? Doesn't sound like the best idea to me. And of course she recommended a probiotic which is SCD friendly (she really pushes the SCD). I'm not against the SCD.... it did actually help me some. Essentially I do best without any grains BUT then I feel like I am starving and losing more weight. She also admitted that going back onto birth control may be a good idea because she tends to see a trend where patients with autoimmune conditions improve with pregnancy and/or birth control.
Martha, thank you for the idea of the protein powder. The only problem is that the one you suggested has pea protein in it. I am trying to stay away from peas and legumes, etc., since I react to soy. So I need to try and find one that has only rice protein. And good job to you for breastfeeding for 6 years of your life! I can't even imagine! I would literally wither away into nothing if I had to do that. Breastfeeding has been great but it has also been really hard on my body. My little one is getting a little bit of formula along with breastmilk at this point, and I am OK with that. She was exclusively BF for the first 6 months, so I met my initial goal at least!
One more question: Has anyone done the MRT testing? Any success with this? Is this legit?
Oh, and when I do get my colonoscopy, what is the special stain that I should ask for to look for mast cells?
Again, thank you all for you help. This online forum really is AWESOME and so helpful!
katie,
Gabes drinks a rice protein shake. I'm not sure which one, but you could look into that one. If you can handle rice.
Also while I was breastfeeding my last child, I don't think I had the full blown MC at that point. It was about 6 months after I stopped that I finally said ok I can't handle "IBS" anymore. I can't imagine breastfeeding with my current health. Good luck to you!
Gabes drinks a rice protein shake. I'm not sure which one, but you could look into that one. If you can handle rice.
Also while I was breastfeeding my last child, I don't think I had the full blown MC at that point. It was about 6 months after I stopped that I finally said ok I can't handle "IBS" anymore. I can't imagine breastfeeding with my current health. Good luck to you!
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
Katie wrote:If anything I think trying a small amount at night before bed would be the best option because I don't take any supplements nor eat right before bed. Any thoughts on this? Additionally, I read the insert for the Cholestyramine and MAN there are a lot of nasty ingredients in that powder. Tons of additives and food coloring, etc. Blech.
I would agree that bedtime might be a good time, but remember that it may tie up many nutrients in any food or supplements taken within at least 4 hours before you take the cholestyramine. The label says to take supplements or meds 1 hour before and 4 hours after taking cholestyramine, but I find that hard to believe. If you eat a meal or take a med or supplement, it is not necessarily going to be absorbed within 1 hour, or 2 or 3 hours, for that matter. The turnaround rate depends on what else is in the digestive system. On the average, it takes food 1 to 4 hours to exit the stomach, depending on digestion requirements and efficiency (IOW, depending on the food and the condition of the digestive system). Liquids are an exception, and they can make the trip much more rapidly. From the time it's swallowed, until it exits the small intestine, most food takes (on the average) 8 to 10 hours to make the trip. How do I know? I have an ileostomy, so I can tell exactly now long it takes for various foods to exit the small intestine.
The only common substance that's absorbed in the stomach is alcohol. Everything else has to be absorbed in the small intestine, except for electrolytes and water, which are normally absorbed in the colon. (I say "normally", because if a patient has secretory diarrhea, which is the hallmark of MC, then water and electrolytes are infused into the colon, rather than absorbed). Call me a skeptic, but IMO a powder dissolved in water (or some other liquid) is not likely to remain in the stomach very long. It's going to be dumped into the duodenum relatively quickly, and as it rapidly progresses downward, it's going to at least have the opportunity to sequester all sorts of nutrients that are still being processed as part of the normal digestion cycle. Obviously any nutrients that are not absorbed before they arrive at the terminal ileum are not likely to be absorbed anyway, but the question of how many nutrients might be sequestered depends on the results of several integral calculus equations that define the time rate of absorption of various nutrients and their travel distance down the small intestine, balanced against the progress of the cholestyramine down the same path.
I have a hunch that this has never actually been correctly determined by researchers, because it seems pretty clear to me that the effective window in which cholestyramine might affect nutrients ingested prior to the introduction of the drug is much wider than 1 hour. But this would surely vary by the individual as well.
But the bottom line is that nutrient absorption is compromised with MC anyway, so it's possible that the additional effect of the cholestyramine might be negligible by comparison. If it (the drug) can stop the rapid motility associated with D, then this might result in improved nutrient absorption simply by virtue of an improved opportunity for absorption (slower motility allows more time for absorption).
Or maybe my thinking on this is all wet.
And yes, manufacturers of pharmaceutical products apparently feel obligated to honor some unwritten law that says that every drug they produce must contain at least 1 inactive ingredient that will adversely affect every patient who might use that product. And of course the best way to ensure that they meet that requirement is to use as many ingredients as possible. After all, if their product causes side effects because of various ingredients, there is a good chance that the patient's doctor may prescribe another drug to counter the side effects, thereby keeping that old cash register ringing.
The downfall of NPs in general is that they don't know when to stop recommending supplements. MC patients simply can't handle all the supplements that most NPs try to push on them. If we take enough supplements, it's almost guaranteed that 1 or more of them will prevent us from reaching remission. Turmeric does have anti-inflammatory properties. Unfortunately most MC patients find that despite the fact that it takes a wheelbarrow full of the stuff to actually have a therapeutic effect, precious few of us can tolerate more than a very small amount at any given time. This falls into the same category as Boswellia serrata — in theory it's a great idea, but in the real world it's just not practical to use enough of it to actually realize the therapeutic potential promised by the drug. In the case of Boswellia, it's too expensive. In the case of turmeric, most people can't tolerate it. But here and there you will find an individual who praises these products to high heaven. And to further complicate the matter, as I'm sure you're well aware, research shows that the placebo effect in general is not only real, but very powerful.
The MRT testing is better than a poke in the eye with a sharp stick, but the problem with it is that every result has to be verified by trial and error testing, and their program requires hiring a "qualified dietitian" who actually knows nothing about MC, so they are rarely any help. Sill, some people find it helpful for tracking down sensitivities that they haven't been able to detect by any other means. You can read some discussions about it at the link below:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=66
A tryptase-based stain is used to make it easier to see mast cells in biopsy samples.
You're most welcome, and I hope that some of this is helpful.
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.