This is my first time posting and I'm not sure where to start. About 10yrs ago I switched from cow milk to soymilk because I was getting severe eczema on my hands and face. A few weeks after doing so I started having issues with diarrhea, which continued to get worse. I went to a GI doctor who preformed a colonoscopy and dx me with LC. By the time I received my results I had decided to switch from soy to rice milk to see if that made a difference which it did. I attempted to explain to the GI but he was more excited that they found something and told me it wasn’t anything serious and to simply use pepto everyday. I blew him off thinking I had taken the soy out so now I will be fine.
Over the years my bathroom habits would wax and wane. I was okay not great but not bad. Then I got pregnant with my first son and it was amazing! I could eat pizza, cheese, ice cream, things I hadn’t touched in years with NO repercussions! Then I had my son and the stomach issues returned and were slightly worse along with hives. I had hives from the time he was 2 months old until he was about 6 months old. I went on 3 rounds of prednisone and they kept coming back. Finally I was sent to an allergist who told me to take Claritin in the morning and Zyrtec and Tagamet at night. That worked for the hives but the stomach persisted. I ignored it because I was a busy working mom and then I got pregnant with my second. Same deal great while pregnant and terrible after. Except this time it was MUCH worse. I was so sick. Nausea everyday for most of the day and making 12 trips to the bathroom. I had indigestion, flushing, rapid heart beat, dizziness, insomnia, numbness in my feet in the morning, crawling skin, intolerance to food, vitamins, anything I ingested. After I went to my GI who told me it couldn't be the LC causing all of this I went to every type of doctor imaginable GP, internist, allergist, rheumatologist, endocrinologist, cardiologist and neurologist. I was told I had Post Partum Depression, anxiety, and finally POTS. I had a gallbladder with a 25% ejection fraction, gastroparesis, a positive ANA, elevated IGF-1 and acid reflux. Finally I got to Mayo and I was told I only had CC not any of the other things I’d been told. During the 3yrs I was going to all of these appointments I was changing my diet and I was improving it was slow but I was getting better.
The GI at Mayo put me on entocort. It helped slow things down but as I weaned the symptoms returned with a vengeance. Now I’m off it and I feel like I’ve had a huge set back by taking it. I’m reading Tex’s book now and the section about hormones and DAO really resonates with me. I remember telling several doctors I feel like I’m having an allergic reaction like when I was on allergy shots years ago and could never make it to the maintenance dose because of the reactions I was having. It makes so much sense that my body doesn't have the DAO to remove the histamine in my body.
I’m sorry this is so long but my questions are:
1) What DAO supplement should I take and should I also be taking B & D vitamins in addition?
2) What type antihistamines and histamines? (This seems counter intuitive but it worked for my hives)
3) Where can I find the most comprehensive low histamine diet? Paelo?
4) What else should I be doing?
I was a college athlete and always on the go. I never thought I’d be sick and not have the energy to play with my kids and teach them about being active. I just want to be the mom I thought I’d always be and be the mom they deserve.
Thanks for reading my long rant and any guidance is greatly appreciated!
New and searching for my health!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome!
sorry you had to find us and that you have had such a combo of issues and a rough long journey of various specialists etc
sadly, it is not acknowledged by the medical fraternity that MC (CC and LC) can impact 'whole of body'
histamine /mast cells is a complex area. we have a section just for it have you read the posts there?
http://www.perskyfarms.com/phpBB2/viewforum.php?f=74
to answer your questions
B6 is a key part of the histamine cycle and methylation cycle for now I would suggest having B6, VIt D3, Magnesium
rather than comprehensive antihistamine diet, or paelo - some of the ingredients in these plans do not suit MC inflammation
my advice is go back to bland, well cooked, protein and 2-3 vegetables type meals... listen to your body as to what ingredients work best.
cooked fresh minimises histamine. reheated from frozen also minimises histamine (reheated from fridge can be high histamine)
what else can you be doing:
diet wise, gluten free, dairy free, soy free, egg free. low fibre (no salad, no raw vegetables, no raw nuts), minimal fruit - not too ripe bananas are ok (over ripe = high histamine) other fruits have too much fibre and sugar for now. avoid processed foods (gluten free baked goods etc) as much as possible.
it sounds overwhelming at first and you start thinking, what can i eat - these people are nuts! i can assure you, and if you read success stories posts and other discussions you will see that this bland low amount of ingredients type eating plan is fantastic way to reduce inflammation and optimise healing.
lifestyle wise - be conscious of external triggers that can aggravate histamine, like pollen, pollution, dust, mold
one part of the living with MC journey is adjusting our mindset a bit, there will be great days, good days, and the occasional bad day, listen to your body, rest/slow down when you need to. relaxation, ie meditation, relaxation activities, yoga, etc are important Stress (mental and/or emotional and/or physical) can be a major trigger for many. good restful sleep is important.
hope this helps - do some reading of the posts aimed at new people, and the ongoing discussions
sorry you had to find us and that you have had such a combo of issues and a rough long journey of various specialists etc
sadly, it is not acknowledged by the medical fraternity that MC (CC and LC) can impact 'whole of body'
histamine /mast cells is a complex area. we have a section just for it have you read the posts there?
http://www.perskyfarms.com/phpBB2/viewforum.php?f=74
to answer your questions
B6 is a key part of the histamine cycle and methylation cycle for now I would suggest having B6, VIt D3, Magnesium
rather than comprehensive antihistamine diet, or paelo - some of the ingredients in these plans do not suit MC inflammation
my advice is go back to bland, well cooked, protein and 2-3 vegetables type meals... listen to your body as to what ingredients work best.
cooked fresh minimises histamine. reheated from frozen also minimises histamine (reheated from fridge can be high histamine)
what else can you be doing:
diet wise, gluten free, dairy free, soy free, egg free. low fibre (no salad, no raw vegetables, no raw nuts), minimal fruit - not too ripe bananas are ok (over ripe = high histamine) other fruits have too much fibre and sugar for now. avoid processed foods (gluten free baked goods etc) as much as possible.
it sounds overwhelming at first and you start thinking, what can i eat - these people are nuts! i can assure you, and if you read success stories posts and other discussions you will see that this bland low amount of ingredients type eating plan is fantastic way to reduce inflammation and optimise healing.
lifestyle wise - be conscious of external triggers that can aggravate histamine, like pollen, pollution, dust, mold
one part of the living with MC journey is adjusting our mindset a bit, there will be great days, good days, and the occasional bad day, listen to your body, rest/slow down when you need to. relaxation, ie meditation, relaxation activities, yoga, etc are important Stress (mental and/or emotional and/or physical) can be a major trigger for many. good restful sleep is important.
hope this helps - do some reading of the posts aimed at new people, and the ongoing discussions
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 M,
Welcome to our Internet family. Your experience with remission during pregnancy supports my theory that those who go into remission during pregnancy do so because their inflammation may be driven by mast cell issues and histamine rather than by the classic T cell inflammation pattern claimed by the official medical description of MC to be the cause of the disease. Thank you for sharing that information.
And as Gabes pointed out, I agree that MC can cause any or all of those satellite issues for some patients, but of course most doctors will deny that possibility because those issues are not listed as part of the original medical description of the disease.
Gabes has responded with a lot of helpful information, so I'll just touch on a couple of your questions.
Regarding a DAO supplement — theoretically a DAO supplement should help, but in the real world, those members here who have tried DAO supplements have not reported having much success. I'm not sure why that's the case, but it is what it is. I have a hunch that this issue is more complex than it appears to be. I'm in the process of writing Edition II, to take up where the first edition left off, and according to my research, this issue may be associated with a very common problem for IBD patients, namely magnesium deficiency. I have a long way to go to finish the book, but in case this might be helpful, I'll quote part of what I have written so far about this issue (this may not be the final form when the book is published, however, because this is part of the first draft).
As Gabes mentioned, it's best to develop a diet that's free of the major food sensitivities and then avoid or minimize the amounts of foods that have a high histamine content and foods that trigger the release of histamine. You can find some suggested examples of such foods on pages 166—167 in the book. And remember that some medications also trigger the release of histamine (pages 170–171). Based on my observations about magnesium deficiency and DAO (quoted above), this implies that medications that deplete magnesium (and there are many) can also cause a buildup of histamine in the system.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our Internet family. Your experience with remission during pregnancy supports my theory that those who go into remission during pregnancy do so because their inflammation may be driven by mast cell issues and histamine rather than by the classic T cell inflammation pattern claimed by the official medical description of MC to be the cause of the disease. Thank you for sharing that information.
And as Gabes pointed out, I agree that MC can cause any or all of those satellite issues for some patients, but of course most doctors will deny that possibility because those issues are not listed as part of the original medical description of the disease.
Gabes has responded with a lot of helpful information, so I'll just touch on a couple of your questions.
Regarding a DAO supplement — theoretically a DAO supplement should help, but in the real world, those members here who have tried DAO supplements have not reported having much success. I'm not sure why that's the case, but it is what it is. I have a hunch that this issue is more complex than it appears to be. I'm in the process of writing Edition II, to take up where the first edition left off, and according to my research, this issue may be associated with a very common problem for IBD patients, namely magnesium deficiency. I have a long way to go to finish the book, but in case this might be helpful, I'll quote part of what I have written so far about this issue (this may not be the final form when the book is published, however, because this is part of the first draft).
Some antihistamines work better than others on an individual basis, so whatever works best for you is the best choice. However, it's best to avoid those with anticholinergic effects (these are mostly the older first-generation antihistamines) because their use has been shown to be associated with age-related dementia.Many MC cases that are unresponsive to treatment may be associated with an undiagnosed magnesium deficiency.
Magnesium deficiency is very common in the general population. In fact, many authorities insist that a majority of the population in developed countries are magnesium-deficient. And magnesium deficiency is even more likely among MC (and other IBD) patients because not only do both the malabsorption problem and diarrhea associated with the disease deplete magnesium, but the most common medical treatment used to suppress the inflammation, corticosteroids, also depletes magnesium.
Histidine decarboxylase is the enzyme used by the body to convert histidine into histamine. It's known that a magnesium deficiency increases the activity of histidine decarboxylase, thereby increasing the conversion of histidine into histamine. But a magnesium deficiency can lead to a double whammy in this situation, because it also reduces the activity of diamine oxidase enzyme (DAO). As we discussed in the first edition of Microscopic Colitis, DAO is the enzyme primarily used by the body to purge unused or excessive amounts of histamine in circulation, in order to prevent the possibility of a potentially harmful histamine buildup.
So with the potential for a significant increase in histamine production, and a reduced ability to remove excessive amounts of histamine from the body, clearly a magnesium deficiency is likely to significantly increase the risk of a histamine buildup that can lead to various problems with the digestive system and elsewhere.
As Gabes mentioned, it's best to develop a diet that's free of the major food sensitivities and then avoid or minimize the amounts of foods that have a high histamine content and foods that trigger the release of histamine. You can find some suggested examples of such foods on pages 166—167 in the book. And remember that some medications also trigger the release of histamine (pages 170–171). Based on my observations about magnesium deficiency and DAO (quoted above), this implies that medications that deplete magnesium (and there are many) can also cause a buildup of histamine in the system.
Again, welcome aboard and please feel free to ask anything.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thank you for all of the great tips! I'm doing some better and have a couple additional questions. First, have you heard of entocort making people worse, as they wean, then they were prior to starting the medication? Does that mean I didn't take it long enough or would it have happened no matter how long I was on it? Just wondering what others have experienced.
Also, what/where do people eat when they travel?I travel for work and I have two preschool aged kids so I'm constantly on the go. Right now I try to carry rice cakes with almond butter or a banana but I would like a little more variety! And the bone broth that I keep reading about how do I go about making that. I've skimmed through but haven't seen a recipe and i know there must be one someone has shared here.
Lastly, I feel like my stomach is back under me enough to try the calcium and magnesium. I'm assuming that I can get them both in liquid form and is there a brand or ratio that I should start with? And I'm thinking I will start one before the other to see how things go.
Thank you both again for your guidance along this sometimes lonely journey. I truly appreciate your time and knowledge.
Also, what/where do people eat when they travel?I travel for work and I have two preschool aged kids so I'm constantly on the go. Right now I try to carry rice cakes with almond butter or a banana but I would like a little more variety! And the bone broth that I keep reading about how do I go about making that. I've skimmed through but haven't seen a recipe and i know there must be one someone has shared here.
Lastly, I feel like my stomach is back under me enough to try the calcium and magnesium. I'm assuming that I can get them both in liquid form and is there a brand or ratio that I should start with? And I'm thinking I will start one before the other to see how things go.
Thank you both again for your guidance along this sometimes lonely journey. I truly appreciate your time and knowledge.
I only have time to address a couple of your questions. Hopefully someone else will cover the rest.
Weaning off Entocort too rapidly causes a rebound effect. We have to wean off very, very slowly over several months in order to prevent a relapse of symptoms due to the rebound effect. It's also possible that something remaining in your diet (including meds) might be causing the problem. You can find posts here that describe how to properly wean off of budesonide (Entocort).
Do not take liquid magnesium. That's milk of magnesia which is a mixture of magnesium oxide and water. That's a laxative. Avoid magnesium oxide — it causes D because it is very poorly absorbed. Use chelated magnesium (magnesium glycinate), because it is much better absorbed and does not cause D.
Tex
Weaning off Entocort too rapidly causes a rebound effect. We have to wean off very, very slowly over several months in order to prevent a relapse of symptoms due to the rebound effect. It's also possible that something remaining in your diet (including meds) might be causing the problem. You can find posts here that describe how to properly wean off of budesonide (Entocort).
Do not take liquid magnesium. That's milk of magnesia which is a mixture of magnesium oxide and water. That's a laxative. Avoid magnesium oxide — it causes D because it is very poorly absorbed. Use chelated magnesium (magnesium glycinate), because it is much better absorbed and does not cause D.
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
Yes, this can happen when the taper is too quick (not gradual enough) and/or the person is still having too many food triggers/external triggers causing inflammationFirst, have you heard of entocort making people worse, as they wean, then they were prior to starting the medication? Does that mean I didn't take it long enough or would it have happened no matter how long I was on it? Just wondering what others have experienced.
protein shakes, paleo muffins, safe cooked cold meatsAlso, what/where do people eat when they travel?I travel for work and I have two preschool aged kids so I'm constantly on the go.
one of our members recently went on her first trip and she mentions lots of good on the go items in this post
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22309
having a good breakfast helps alot when you on the go (ie protein and vegetables first up) sounds weird but it works!
re magnesium/calcium
agree with tex's response - Vit D3 and magnesium are the priorities in the early stages of healing. Topical oil type magnesium is a good option.
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
Thanks Tex and Gabes. I know Tex said medications could be causing problems. The only one I take regularly is gabipentin for migraines and it helps with sleep. I've started taking Zyrtec daily and just added tagament yesterday which I will monitor my reaction to.
I saw an elemination diet yesterday that I'm going to start even though I know soy and dairy are my main triggers along with gluten. I will try to weed out any other culprits. My seasonal allergies are bad right now so that could be a contributing factor as well.
Thank you both again for you sharing your knowledge and insight in to this complicated condition.
I saw an elemination diet yesterday that I'm going to start even though I know soy and dairy are my main triggers along with gluten. I will try to weed out any other culprits. My seasonal allergies are bad right now so that could be a contributing factor as well.
Thank you both again for you sharing your knowledge and insight in to this complicated condition.
If you have migraines, you almost surely have a chronic magnesium deficiency. The basis of your treatment for migraines should be a good magnesium supplement. That might be all you need. Did you know that magnesium deficiency can be genetic?
Why all migraine patients should be treated with magnesium.
It's interesting that migraines are somewhat common with MC. They were a major problem for me before my gut healed. I have a hunch the common link between MC and migraines is the fact that most people who have an IBD are magnesium deficient.
You're very welcome,
Tex
Why all migraine patients should be treated with magnesium.
It's interesting that migraines are somewhat common with MC. They were a major problem for me before my gut healed. I have a hunch the common link between MC and migraines is the fact that most people who have an IBD are magnesium deficient.
You're very welcome,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
This really gives me hope. Thank you Tex. I've felt like everything that's been happening with my body is linked although every doctor I've seen looks at me like I have two heads! I am so grateful for this new insight and hopeful that this will help me heal. Thank you Tex and Gabes for sharing all of this invaluable information.
You're correct and your doctors just don't understand the disease. MC tends to cause all sorts or problems either directly or indirectly (because of leaky gut and malabsorption problems).
You're very welcome, and best of luck with your recovery.
Tex
You're very welcome, and best of luck with your recovery.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
HI Mashton;
Quick Bone Broth suggestion:
Find a Safe meat (mine happens to be Cornish Hen, but yours could be Turkey)
Cook off the meat (with their bones ofcourse)...remove meat set aside in fridge)
Take bones and put them in a very large crockpot ;-)
Fill pot with good water as high as it will allow, add Sea Salt and a dash of Cider Vinegar
Let cook on Low for a good long day or over night even
Move broth into a cooking pot on the stove
In the mean time you can decide if you want to turn this into a soup or just broth that can be used for gravies, or to drink when the tummy isn't up to par ETC...
If you decide to put it all into the pot you can make a great soup with some carrots, celery..any hearty cut up vege that has been safe for you
If you want to take the soup one step further you can add Tikiyada gluten free noodles in the last 15 minutes of boiling, add your saved meat and you have a great soup to portion out into serving size containers that you will need to Freeze right away after making.
I hold one serving out afterwards because it smells so darn good I have to eat some right away
This is just one bone broth idea...I'm sure it can be tweaked in many ways.
Cheers
Erica
Quick Bone Broth suggestion:
Find a Safe meat (mine happens to be Cornish Hen, but yours could be Turkey)
Cook off the meat (with their bones ofcourse)...remove meat set aside in fridge)
Take bones and put them in a very large crockpot ;-)
Fill pot with good water as high as it will allow, add Sea Salt and a dash of Cider Vinegar
Let cook on Low for a good long day or over night even
Move broth into a cooking pot on the stove
In the mean time you can decide if you want to turn this into a soup or just broth that can be used for gravies, or to drink when the tummy isn't up to par ETC...
If you decide to put it all into the pot you can make a great soup with some carrots, celery..any hearty cut up vege that has been safe for you
If you want to take the soup one step further you can add Tikiyada gluten free noodles in the last 15 minutes of boiling, add your saved meat and you have a great soup to portion out into serving size containers that you will need to Freeze right away after making.
I hold one serving out afterwards because it smells so darn good I have to eat some right away
This is just one bone broth idea...I'm sure it can be tweaked in many ways.
Cheers
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
I forgot to mention that even if you cook it just for broth purposes...you will need to freeze the remaining portion if it becomes more than 2 days old....histamine builds at a tremendous rate even in a liquid stance 
So I would plan to portion it anyway, and freeze within a timely manner. You can still pull out portions and use to make a tiny soup at a later date.
Cheers
Erica
So I would plan to portion it anyway, and freeze within a timely manner. You can still pull out portions and use to make a tiny soup at a later date.
Cheers
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