Dear all,
Since I've written the post you can see here : http://www.perskyfarms.com/phpBB2/viewtopic.php?t=19844 , I had a new treatment with Entocort (8 weeks three pills, 6 weeks two pills, 4 weeks a pill). I've been gluten free for more than a year now (only with some gluten accident sometimes). It was the second time I took this treatment - it worked few days on me with the 3 pills dose only but then nothing (less diarrhea but still frequent Bowel Mouvement & still few big pains located next to the colon, right before having diarrhea).
I've tried lately to take Claritin for 2 weeks without any success and also Chlorpheramine for 3 days (8mg at bed time). I've read everything about mast cells issues but I doubt taking H1 blockers did help me...
I'm wondering if I'm fighting a ghost (MC) or if the problem is elsewhere (I was diagnosed 3 years ago with Candida via this lab in Belgium who analysed my urins with their "gutscreen" technique : http://www.rplab.be - As far as I've had an Arabinose high level, they told me I had a Candida overgrowth issue - Please read here to understand about arabinose: http://www.labco.es/media/pdf/en_download_13.pdf ).
When I wad diagnosed with Candida, I wasn't aware of my Lymphocitic Colitis. I've been treated for a year with sugar free diet + colloidal water ( http://www.amazon.com/Allergy-Research- ... B001LCG0HS). My symptoms were still there and I never did the urine test again (really expensive).
Then I met a new doctor & GI who discovered my LC after coloscopy.
My questions :
- Do I have to keep taking H1 blockers every day ? claritin ? Chlorphéramine ? (only available in france in 4mg+500mg paracetamol pills)
- I know we can have Candida because we have MC but do you think we can have MC because of Candida ? (as far as I don't know which problem came first).
- Do I have to keep going on taking D vitamin ( I'm taking 4000 UI/day since a week - I did that for a month then stopped and just restarted). Everytime I have a blood test my D3 is 25 nmol/l
For me it's an eternal restarting... I had to take 2 pills of Codolipran today (20mg codeine + 300g paracetamol pills) - it's the only thing that keep me without having any issues.
Thx in advance.
Best,
Max
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Hi Max,
IMO, the reason why the Entocort (budesonide) stopped working is because your vitamin D level is extremely low, and not enough vitamin D is available to enable the budesonide to work, nor to allow your immune system to function properly. Your vitamin D level is less than a third of where it should be if you are trying to recover from MC. For many of us this disease uses relatively large amounts of vitamin D. Corticosteroids work by expressing vitamin D receptors which then suppress the inflammation. Without adequate vitamin D, corticosteroids will not work. This may not be what your doctor says, but according to my research (based on published medical data) this is correct.
If I were in your situation I would try taking 7,000 to 8,000 IU of vitamin D per day for at least 3 or 4 months, and then I would test again to see if the level has improved, and adjust the dose up or down as necessary. If you take enough vitamin D, the budesonide should begin to work again.
But another reason why the budesonide is not working may because you have other food sensitivities that need to be removed from your diet. Are you eating dairy products? Most of us cannot tolerate them. Are you eating soy? Many of us cannot tolerate soy or most legumes. If the Entocort still does not work after taking enough vitamin D for a week or 2, then you might need to eliminate dairy, soy, and possibly eggs from your diet (in addition to always avoiding gluten) to see if that helps.
When vitamin D levels are as low as yours, your body cannot effectively fight inflammation or disease. Antihistamines also will not help when your vitamin D level is that low, so there is no point in taking them, at least until you get your blood vitamin D level significantly higher. Without adequate vitamin D, your immune system is crippled, and unable to do it's job.
I'm not a doctor, but that is my opinion, based on my own experiences and the experiences of many other members here.
You're very welcome. Please let us know if this helps, and keep us posted on your progress.
Tex
IMO, the reason why the Entocort (budesonide) stopped working is because your vitamin D level is extremely low, and not enough vitamin D is available to enable the budesonide to work, nor to allow your immune system to function properly. Your vitamin D level is less than a third of where it should be if you are trying to recover from MC. For many of us this disease uses relatively large amounts of vitamin D. Corticosteroids work by expressing vitamin D receptors which then suppress the inflammation. Without adequate vitamin D, corticosteroids will not work. This may not be what your doctor says, but according to my research (based on published medical data) this is correct.
If I were in your situation I would try taking 7,000 to 8,000 IU of vitamin D per day for at least 3 or 4 months, and then I would test again to see if the level has improved, and adjust the dose up or down as necessary. If you take enough vitamin D, the budesonide should begin to work again.
But another reason why the budesonide is not working may because you have other food sensitivities that need to be removed from your diet. Are you eating dairy products? Most of us cannot tolerate them. Are you eating soy? Many of us cannot tolerate soy or most legumes. If the Entocort still does not work after taking enough vitamin D for a week or 2, then you might need to eliminate dairy, soy, and possibly eggs from your diet (in addition to always avoiding gluten) to see if that helps.
When vitamin D levels are as low as yours, your body cannot effectively fight inflammation or disease. Antihistamines also will not help when your vitamin D level is that low, so there is no point in taking them, at least until you get your blood vitamin D level significantly higher. Without adequate vitamin D, your immune system is crippled, and unable to do it's job.
I'm not a doctor, but that is my opinion, based on my own experiences and the experiences of many other members here.
You're very welcome. Please let us know if this helps, and keep us posted on your progress.
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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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
Massimo,
Hi and welcome. I agree with Tex. Sometimes just eliminating gluten is not enough. What does your diet look like? That might help us offer suggestions to you.
Look at all my sensitivities (to the left under my name). The main ones for me are: gluten, dairy, soy, eggs, rice, chicken... I've had to eliminate a lot and in the beginning I also couldn't eat many vegetables or nuts due to their fiber, which is a colon irritant. I'm much better now, and eat some nuts (limited) and veggies and fruit daily now.
It takes a while to heal. It might be a very limited, boring diet for a while. But you can get your life back. I suggest ditching dairy, fiber, soy and possibly eggs completely for a while, see if that changes things.
Focus on meat, mushy green beans/potatoes/sweet potatoes, etc. It's boring but it might help.
best wishes,
Nancy
Hi and welcome. I agree with Tex. Sometimes just eliminating gluten is not enough. What does your diet look like? That might help us offer suggestions to you.
Look at all my sensitivities (to the left under my name). The main ones for me are: gluten, dairy, soy, eggs, rice, chicken... I've had to eliminate a lot and in the beginning I also couldn't eat many vegetables or nuts due to their fiber, which is a colon irritant. I'm much better now, and eat some nuts (limited) and veggies and fruit daily now.
It takes a while to heal. It might be a very limited, boring diet for a while. But you can get your life back. I suggest ditching dairy, fiber, soy and possibly eggs completely for a while, see if that changes things.
Focus on meat, mushy green beans/potatoes/sweet potatoes, etc. It's boring but it might help.
best wishes,
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
Dear Tex & Nancy,
Thx a lot for your answers
I will take much more d vitamin. Do you have a brand to advise ? Qualitative & not too expansive ? I'm still in my last month of 1 pill entocort & I feel a bit sad to understand that only now...
Do you think it is kind of risky to restart Entocort in 4 months when my D3 level will be higher ?
I don't understand why I got bad D. yesterday & today - the only thing that changed is that I've just restarted D3 vitamin and stopped taking my 2 pills entocort for 1 now - Any idea ?
To answer nancy, I'm gluten free and I cook everything myself. I eat mostly : vegetables like zucchini with olive oil + garlic, rice pasta (barilla gluten free), mashed potatoes, french fries, chopped steack, chicken breast (gluten free), ham (gluten free), fish... I also do my own tomato sauce for Pasta - I add spicies like herbs de provence, pepper.
When I have flare-up, I never eat dairy products. When my symptoms are ok I eat occasionaly goat cheese. I sometimes add pecorino or parmiggiano cheese on my pasta.
I also do my own bread with gluten free farina like Nutri Free Mix per Pane or the one from Schär products.
3 years ago, When I add my test done for candida, I also did a test for food intolerances saying I had to stop Rice & Maize for a while (but same taste said I was ok with gluten, eggs, cheese expect old ones like Camembert). I've stopped them for a year but now I eat rice most of the time as far as it is in gluten free pasta & bread. I don't think it hurts me but for sure it doesnt help if I still have a yeast problem.
I've also noticed that everytimes I eat lentils, I really can't tolerate it. I've stopped eating eggs since a month now as fars as the white part doesnt seem to help my condition.
PS: Sometimes during the week-end, I drink few alcohol drinks with friends.
Max
Thx a lot for your answers
I will take much more d vitamin. Do you have a brand to advise ? Qualitative & not too expansive ? I'm still in my last month of 1 pill entocort & I feel a bit sad to understand that only now...
Do you think it is kind of risky to restart Entocort in 4 months when my D3 level will be higher ?
I don't understand why I got bad D. yesterday & today - the only thing that changed is that I've just restarted D3 vitamin and stopped taking my 2 pills entocort for 1 now - Any idea ?
To answer nancy, I'm gluten free and I cook everything myself. I eat mostly : vegetables like zucchini with olive oil + garlic, rice pasta (barilla gluten free), mashed potatoes, french fries, chopped steack, chicken breast (gluten free), ham (gluten free), fish... I also do my own tomato sauce for Pasta - I add spicies like herbs de provence, pepper.
When I have flare-up, I never eat dairy products. When my symptoms are ok I eat occasionaly goat cheese. I sometimes add pecorino or parmiggiano cheese on my pasta.
I also do my own bread with gluten free farina like Nutri Free Mix per Pane or the one from Schär products.
3 years ago, When I add my test done for candida, I also did a test for food intolerances saying I had to stop Rice & Maize for a while (but same taste said I was ok with gluten, eggs, cheese expect old ones like Camembert). I've stopped them for a year but now I eat rice most of the time as far as it is in gluten free pasta & bread. I don't think it hurts me but for sure it doesnt help if I still have a yeast problem.
I've also noticed that everytimes I eat lentils, I really can't tolerate it. I've stopped eating eggs since a month now as fars as the white part doesnt seem to help my condition.
PS: Sometimes during the week-end, I drink few alcohol drinks with friends.
Max
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Max
sorry to hear you are having a tough time.
If you react to lentils, then it is very likely you react to any soy/legume product. Alot of the gluten free breads and processed products would have soy in them.
Things like alcohol are quite inflammatory, so if you are reacting to something like soy, and have soy and alcohol in the same meal, it is very likely to make the reaction worse. That would explain why you get D worse after some meals not all.
If you did react to rice and maize in the past, now that you are gluten free and having more of them, maybe they have become more of a trigger.
It has been very common for people here that once they have fully removed gluten, healed a bit, other items such as Dairy, Soy, Rice etc becomes the major trigger.
the tricky part is that if you are reacting to multiple things, with a low Vit D level, it is hard to pinpoint exactly which items are causing the issue while you are still eating them.
as you have been taking the entocort, you may not get accurate results from doing enterolab testing.
the only way to confirm what food item you are reacting to is to stop all Soy, Rice, Maize etc. minimise alcohol during this process, take high doses of Vit D and get the inflammation levels reduced. When you are no longer having D, try small amounts of each ingredient, one at a time.
have a small amount one day, wait 24 hours, then have another small serve, wait 24 hours have another small serve. If after the third day you have D or other gut symptoms, then you know you are reacting.
the reason we say to have small serves for three days. If you have avoided a food for a period of time, you will always have a small reaction when you eat that food again. having small serve (no more than 1/3 cup serving size) for a couple of days is best way to confirm the status of that food.
Also keep in mind that our bodies can also react to non food triggers - a change in water supply, a change in routine, not getting as much sleep, stress (emotional, mental, physical, if you have been having more alcohol in the lead up to christmas etc
hope this helps.
sorry to hear you are having a tough time.
If you react to lentils, then it is very likely you react to any soy/legume product. Alot of the gluten free breads and processed products would have soy in them.
Things like alcohol are quite inflammatory, so if you are reacting to something like soy, and have soy and alcohol in the same meal, it is very likely to make the reaction worse. That would explain why you get D worse after some meals not all.
If you did react to rice and maize in the past, now that you are gluten free and having more of them, maybe they have become more of a trigger.
It has been very common for people here that once they have fully removed gluten, healed a bit, other items such as Dairy, Soy, Rice etc becomes the major trigger.
the tricky part is that if you are reacting to multiple things, with a low Vit D level, it is hard to pinpoint exactly which items are causing the issue while you are still eating them.
as you have been taking the entocort, you may not get accurate results from doing enterolab testing.
the only way to confirm what food item you are reacting to is to stop all Soy, Rice, Maize etc. minimise alcohol during this process, take high doses of Vit D and get the inflammation levels reduced. When you are no longer having D, try small amounts of each ingredient, one at a time.
have a small amount one day, wait 24 hours, then have another small serve, wait 24 hours have another small serve. If after the third day you have D or other gut symptoms, then you know you are reacting.
the reason we say to have small serves for three days. If you have avoided a food for a period of time, you will always have a small reaction when you eat that food again. having small serve (no more than 1/3 cup serving size) for a couple of days is best way to confirm the status of that food.
Also keep in mind that our bodies can also react to non food triggers - a change in water supply, a change in routine, not getting as much sleep, stress (emotional, mental, physical, if you have been having more alcohol in the lead up to christmas etc
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
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Max
a few background facts as to why Soy may be an issue, and worth some consideration:
- genetically we are not built to digest soy
- soy is cheap, really cheap, it is being used in products as filler / preservative
- because it is cheap, it is also being used in alot of processed flour type gluten free products
- the soy product being used in these products is like a 'waste' product, that the asians would never consume
- all of this makes it highly inflammatory on your gut.
It is also used in sorbet's/gelato's as filler, vegetables and fruit are sprayed with it to make them last longer in supermarkets, anything that has processed flours etc, snack foods, deep fried products (soy based vegetable oil is the cheapest)
i think the Schar products have a high soy content.
I react worse to soy than gluten. Some friends of friends (non MC'ers) that were already gluten and dairy free and still having digestion issues, gave up soy at my suggestion, within a week they felt heaps better. The amount of people reacting to soy is increasing.
a few background facts as to why Soy may be an issue, and worth some consideration:
- genetically we are not built to digest soy
- soy is cheap, really cheap, it is being used in products as filler / preservative
- because it is cheap, it is also being used in alot of processed flour type gluten free products
- the soy product being used in these products is like a 'waste' product, that the asians would never consume
- all of this makes it highly inflammatory on your gut.
It is also used in sorbet's/gelato's as filler, vegetables and fruit are sprayed with it to make them last longer in supermarkets, anything that has processed flours etc, snack foods, deep fried products (soy based vegetable oil is the cheapest)
i think the Schar products have a high soy content.
I react worse to soy than gluten. Some friends of friends (non MC'ers) that were already gluten and dairy free and still having digestion issues, gave up soy at my suggestion, within a week they felt heaps better. The amount of people reacting to soy is increasing.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Max,
Yes, 25 ng/ml is definitely much better than 25 nmol/l (which is equivalent to 10 ng/ml). That's high enough that your vitamin D level shouldn't be a major problem. We usually prefer to see it above 30–35 ng/ml (75–88 nmol/l), just to be sure that we have enough vitamin D in our blood to ensure that our immune system will work well, but your current level is not a serious problem.
Personally, I like to keep my vitamin D level at least twice that amount as a minimum (and 3 or 4 times that amount, ideally), but that's just me.
Tex
Yes, 25 ng/ml is definitely much better than 25 nmol/l (which is equivalent to 10 ng/ml). That's high enough that your vitamin D level shouldn't be a major problem. We usually prefer to see it above 30–35 ng/ml (75–88 nmol/l), just to be sure that we have enough vitamin D in our blood to ensure that our immune system will work well, but your current level is not a serious problem.
Personally, I like to keep my vitamin D level at least twice that amount as a minimum (and 3 or 4 times that amount, ideally), but that's just me.
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.
Following up on what Gabes said about soy, she's right - Asians traditionally consumed soy after it was thoroughly cooked, cultured, or fermented (think miso, soy sauce). And these cultures consumed every part of any animal or fish (lots of starving people), so we should listen to their wisdom in figuring out what we can and shouldn't eat. The way we grow and process soy (and corn, for that matter) these days bears no resemblance to how our bodies can actually utilize it.
I am 3 months into the strict diet. It's like peeling back an onion - you eliminate all the obvious triggers first. But then your body will indicate that there are other items that disagree with it. Like chicken, in my case. Bummer. I hope to introduce eggs soon. Cheese would be awesome, some day, but we'll see...
Best of luck undertaking your new lifestyle!
I am 3 months into the strict diet. It's like peeling back an onion - you eliminate all the obvious triggers first. But then your body will indicate that there are other items that disagree with it. Like chicken, in my case. Bummer. I hope to introduce eggs soon. Cheese would be awesome, some day, but we'll see...
Best of luck undertaking your new lifestyle!
Dear all,
thx again for all those who have answered and gave me advices.
I still don't understand what is happening to me. It seems that I have a big flare since I've stopped the 2 pills of entocort vs 1 pill or maybe something else happened. I had no such bad symptoms since a long time. I took 2 codeines pills again yesterday and D stopped for 12 hours. But it only stop me to go to bathroom. As soon as I want to go, it's only D. It's been 4 days that I have D. I had no such symptoms for a while.
Everytime I'm about to have D I'm feeling a real pain inside my colon (or next to it - hard to tell), I'm first bloated, then nothing else than yellow D. Then I'm ok but dizzy and tired. I'm barely eating now because I'm afraid to make mistakes. Everything seems a poison.
What about only eat meat (real fresh meat) for a while ? I took 8 weeks of entocort 9mg, 6 weeks of 6mg. Now I'm finishing my 4 weeks of 3mg. It's just like nothing healed ! And it's worse.
Thx in advance for your lights/thoughts.
best,
Max
thx again for all those who have answered and gave me advices.
I still don't understand what is happening to me. It seems that I have a big flare since I've stopped the 2 pills of entocort vs 1 pill or maybe something else happened. I had no such bad symptoms since a long time. I took 2 codeines pills again yesterday and D stopped for 12 hours. But it only stop me to go to bathroom. As soon as I want to go, it's only D. It's been 4 days that I have D. I had no such symptoms for a while.
Everytime I'm about to have D I'm feeling a real pain inside my colon (or next to it - hard to tell), I'm first bloated, then nothing else than yellow D. Then I'm ok but dizzy and tired. I'm barely eating now because I'm afraid to make mistakes. Everything seems a poison.
What about only eat meat (real fresh meat) for a while ? I took 8 weeks of entocort 9mg, 6 weeks of 6mg. Now I'm finishing my 4 weeks of 3mg. It's just like nothing healed ! And it's worse.
Thx in advance for your lights/thoughts.
best,
Max
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Max,
The pain is an indication of inflammation.
The pain, and how you feel after the BM, is something that happened to me for about 20 years. It stopped once I removed all the major triggers (yeast, soy, gluten, lactose etc)
With the reduction of entocort, and the increase of symptoms, it is an indicator that you were ingesting ingredients that are major triggers.
Going back to a bland, well cooked, small amount of ingredients type meals is a very good idea, keep in mind it will take a week or a few weeks for the chronic inflammation to settle down, so stick with it and give the body time to heal.
Water, small amounts of black tea or black coffee.
No fruit, or fruit juice.
Once the D settles, don't be too quick to include too many other foods, take it really slow. One new ingredient at a time. Always well cooked, bland etc.
Not the ideal situation for the holiday season, if you can stick with this, the D will stop.
Hope this helps.
The pain is an indication of inflammation.
The pain, and how you feel after the BM, is something that happened to me for about 20 years. It stopped once I removed all the major triggers (yeast, soy, gluten, lactose etc)
With the reduction of entocort, and the increase of symptoms, it is an indicator that you were ingesting ingredients that are major triggers.
Going back to a bland, well cooked, small amount of ingredients type meals is a very good idea, keep in mind it will take a week or a few weeks for the chronic inflammation to settle down, so stick with it and give the body time to heal.
Water, small amounts of black tea or black coffee.
No fruit, or fruit juice.
Once the D settles, don't be too quick to include too many other foods, take it really slow. One new ingredient at a time. Always well cooked, bland etc.
Not the ideal situation for the holiday season, if you can stick with this, the D will stop.
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
Max,
As Gabes wrote, something in your diet is producing the inflammation that is causing the diarrhea to continue.
Eskimos Prove An All Meat Diet Provides Excellent Health
Tex
As Gabes wrote, something in your diet is producing the inflammation that is causing the diarrhea to continue.
Yes, you can live on only meat, and live healthy on only meat. But be sure that it contains plenty of fat, because without adequate fat, we develop what is known as "rabbit starvation". You can read about rabbit starvation (and how to avoid it) in the article at the following link:Max wrote:What about only eat meat (real fresh meat) for a while ?
Eskimos Prove An All Meat Diet Provides Excellent Health
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.
.jpg){kind=avatar}
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UkuleleLady
- Gentoo Penguin
- Posts: 383
- Joined: Sun Jun 23, 2013 4:45 pm
- Location: Texas
I also ate mostly meat for a while, and things got better. I mostly ate lamb and turkey. My diet is heavy in meat still because that works best for me.
Pasta sauce (tomatoes) is pretty acidic, might be too harsh. Raw vegetables are not good for you right now, think very mushy green beans or something a long those lines if you must have a vegetable.
Best wishes.
Nancy
Pasta sauce (tomatoes) is pretty acidic, might be too harsh. Raw vegetables are not good for you right now, think very mushy green beans or something a long those lines if you must have a vegetable.
Best wishes.
Nancy
If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~The Dalai Lama
