It's definitely frustrating knowing that the Entocort wasn't doing the job alone, spent well over 1500 on it this year paying off my deductible. Now that I'm going to just go off it and do the labs and thinking it may not be as accurate due to the Entocort that didn't even work makes me want to break something.tex wrote:Bearcat,
What Donna says is certainly true in some cases. It depends on our antibody levels at the beginning, and it especially depends on how strongly (or weakly) corticosteroids affect our immune system. We are all different.
It's uncertainty and lack of information that causes us to feel frustrated and hopeless. As soon as we have a plan in place, we feel better, and we're less stressed. The selective IgA deficiency blood test would get you out of that frustrating holding pattern, one way or the other.Bearcat wrote:Feels like I'm in a holding pattern, not capable of making much progress towards recovery.
But what Jean described is definitely a practical alternative, and it can be initiated immediately.
Tex
Update, ineffective treatment
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Do the IgA blood test. If your result is too low, you may want to just hold the test kit until your immune system recovers, and then you can collect and send in a sample that you know will be valid. Don't waste your 560 bucks if you know the test results will not be reliable.
If you don't want to have to deal with your doctor at the moment, you should be able to get the IgA blood test done at one of the direct-to-patient labs in many cities. You can look up locations on AnyLabTestNow.com, for example.
Tex
If you don't want to have to deal with your doctor at the moment, you should be able to get the IgA blood test done at one of the direct-to-patient labs in many cities. You can look up locations on AnyLabTestNow.com, for example.
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 the process thus far has been expensive and not so successful, stress does not help things...
In line with Donna's note above, and what hundreds of other MC'ers have endured, there is no quick fix, easy solution.
I could not afford the enterlab tests so did elimination diet. Went back to very bland basics, got the gut stabilised and went from there. I have avoided the items that were most common amongst the group (lettuce, raw veges, beans/legumes) It took me 9 months to confirm major and medium level triggers.
Through this process I also figured out that stress was one of my major triggers, whether that be mental, physical and or emotional.
I had to implement lifestyle, relaxation techniques to minimise issues. Block time in my work diary between stressful meetings so I could relax. And learnt how to say no, so I could avoid getting over tired etc.
Triggers are not just foods, it can be environmental; pollution, chemicals, mold, climate changes, pollen. For those who are very reactive, they have had to make quite a few big changes to minimise MC issues.
I get it, it sucks that there is no easy solution. And when you feel like shite, dealing with this level of change 'for life' is overwhelming....
That is the other aspect to this. No med or food changes can help the mental and emotional side of life with MC. It is for life. It is, what it is. Nothing can make it go away for ever, we have to accept it, embrace it and love it, like the naughty destructive puppy it is.
Have you read the posts in the success area of the forum? There are others like you, in their 20's, 30's, 40's that have figured out their MC management plan and got their life back. Holidaying, hiking, with minimal to no symptoms.
Life is 10% what happens to you and 90% how you react to it.
In line with Donna's note above, and what hundreds of other MC'ers have endured, there is no quick fix, easy solution.
I could not afford the enterlab tests so did elimination diet. Went back to very bland basics, got the gut stabilised and went from there. I have avoided the items that were most common amongst the group (lettuce, raw veges, beans/legumes) It took me 9 months to confirm major and medium level triggers.
Through this process I also figured out that stress was one of my major triggers, whether that be mental, physical and or emotional.
I had to implement lifestyle, relaxation techniques to minimise issues. Block time in my work diary between stressful meetings so I could relax. And learnt how to say no, so I could avoid getting over tired etc.
Triggers are not just foods, it can be environmental; pollution, chemicals, mold, climate changes, pollen. For those who are very reactive, they have had to make quite a few big changes to minimise MC issues.
I get it, it sucks that there is no easy solution. And when you feel like shite, dealing with this level of change 'for life' is overwhelming....
That is the other aspect to this. No med or food changes can help the mental and emotional side of life with MC. It is for life. It is, what it is. Nothing can make it go away for ever, we have to accept it, embrace it and love it, like the naughty destructive puppy it is.
Have you read the posts in the success area of the forum? There are others like you, in their 20's, 30's, 40's that have figured out their MC management plan and got their life back. Holidaying, hiking, with minimal to no symptoms.
Life is 10% what happens to you and 90% how you react to it.
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 Bearcat,
I am sorry you are struggling.
This study was recently posted on the forum and I wasn't sure if you saw it. It is a good read but does not talk about dietary changes.
http://www.usahealthsystem.com/workfile ... stions.pdf
I thought this quote on page 232 was interesting.
What we find on the forum is that folks going off of budesonide that are GF and DF have a very low relapse rate, i.e. not the 60% - 80% relapse rate in study. A small percentage of our forum members and by that I'm guessing under 10% and possibly under 5% that are GF and DF struggle when getting off of budesonide but the vast majority sail off of budesonide with a low taper as long as they are GF and DF.
The takeaway to me is that budesonide is not a "cureall." Those that get off of budesonide without going GF have extremely high relapse rates.
Even if you had "responded to budesonide" you would most likely need to be GF to stay in remission.
I was a budesonide user (on it for 4.5 months.) The last 3 months I was on VERY LOW DOSE. 3 weeks-3 pills, 4 weeks- 2 pills, 4 weeks-1 pill,
4 weeks every other day, two weeks every third day.
I did not get tested from Enterolab until late in the game. I would call/email Phyllis at Enterolab regarding your situation and see what she says.
Another gal and I had our Enterolab test about 5 weeks after getting off of budesonide. My results are in the results section under Brandy.
Depending upon what Phyllis says on timetable you can go GF, DF, SF, and EF for awhile and to save money.
When I was getting off of budesonide I went GF, DF, SF and EF as directed by this board. I was really afraid of relapse. I think I went GF Oct 1. DF Jan 1, and SF and EF Jan 15th as emergency precautions before I got off of budesonide.
Please note it can take awhile for healing to occur. You are younger. It should be faster than a lot of folks. Healing time for a lot of folks is 2 years. i.e. 45 day trial of GF is most likely not long enough. Think 3-4 months to see serious results.
Read your earlier posts. Stick to no supplements other than D3 for awhile. That will help healing. Also saw you are a weight lifter. Check into paleo. IT is a very safe regimen for us. There are a lot of lifters on the Marks Daily Apple forum.
Also saw you like the occasional alcoholic beverage. Eliminate beer due to the gluten. Some people are ok with Omission (GF beer). The alcholic ciders are good. White wine is safer than red wine early on due to the histamines but now I can have red wine. I do a lot better having alcohol with food. Alcohol and no food is rough for me. Less alcohol is better earlier on. Also certain spirits are safe for us but I don't drink them.
You might try the antihistamines if you have not yet. Allegra and Zyrtec have been talked about recently. I've responded well to benedryl and claritin ready tab but they are not good for those with alzheimers risk.
I thought the enterolab testing was worth the money although I did it late in the game due to denial and dumbheadedness.
Regards,
Brandy
I am sorry you are struggling.
This study was recently posted on the forum and I wasn't sure if you saw it. It is a good read but does not talk about dietary changes.
http://www.usahealthsystem.com/workfile ... stions.pdf
I thought this quote on page 232 was interesting.
On responders to budesonide (which it sounds like you are not one) after getting off of budesonide the study is showing a relapse rate of 60%-80%. There are several Mayo studies that show the same relapse rates getting off of Entocort.After withholding short-term
budesonide treatment or maintenance therapy (6 mg),
relapse rates are high (60%–80%).5,11
What we find on the forum is that folks going off of budesonide that are GF and DF have a very low relapse rate, i.e. not the 60% - 80% relapse rate in study. A small percentage of our forum members and by that I'm guessing under 10% and possibly under 5% that are GF and DF struggle when getting off of budesonide but the vast majority sail off of budesonide with a low taper as long as they are GF and DF.
The takeaway to me is that budesonide is not a "cureall." Those that get off of budesonide without going GF have extremely high relapse rates.
Even if you had "responded to budesonide" you would most likely need to be GF to stay in remission.
I was a budesonide user (on it for 4.5 months.) The last 3 months I was on VERY LOW DOSE. 3 weeks-3 pills, 4 weeks- 2 pills, 4 weeks-1 pill,
4 weeks every other day, two weeks every third day.
I did not get tested from Enterolab until late in the game. I would call/email Phyllis at Enterolab regarding your situation and see what she says.
Another gal and I had our Enterolab test about 5 weeks after getting off of budesonide. My results are in the results section under Brandy.
Depending upon what Phyllis says on timetable you can go GF, DF, SF, and EF for awhile and to save money.
When I was getting off of budesonide I went GF, DF, SF and EF as directed by this board. I was really afraid of relapse. I think I went GF Oct 1. DF Jan 1, and SF and EF Jan 15th as emergency precautions before I got off of budesonide.
Please note it can take awhile for healing to occur. You are younger. It should be faster than a lot of folks. Healing time for a lot of folks is 2 years. i.e. 45 day trial of GF is most likely not long enough. Think 3-4 months to see serious results.
Read your earlier posts. Stick to no supplements other than D3 for awhile. That will help healing. Also saw you are a weight lifter. Check into paleo. IT is a very safe regimen for us. There are a lot of lifters on the Marks Daily Apple forum.
Also saw you like the occasional alcoholic beverage. Eliminate beer due to the gluten. Some people are ok with Omission (GF beer). The alcholic ciders are good. White wine is safer than red wine early on due to the histamines but now I can have red wine. I do a lot better having alcohol with food. Alcohol and no food is rough for me. Less alcohol is better earlier on. Also certain spirits are safe for us but I don't drink them.
You might try the antihistamines if you have not yet. Allegra and Zyrtec have been talked about recently. I've responded well to benedryl and claritin ready tab but they are not good for those with alzheimers risk.
I thought the enterolab testing was worth the money although I did it late in the game due to denial and dumbheadedness.
Regards,
Brandy
Tex,
I've met my deductible for the year already with my Entocort prescriptions so I'll definitely visit the doctor for the labwork. She usually orders any labs I want to get without question.
Gabes - I think stress for me is definitely a trigger. Unfortunately, I'm a retail pharmacist. My entire eight hour shift is almost pure stress! lol. Add that on top of worrying my MC will hit and have to use the head during the long part of shift where I'm solo. Fortunately for me, my MC is not severe and that only includes a semi-solid BM once or twice and I'm back to normal again.
I've met my deductible for the year already with my Entocort prescriptions so I'll definitely visit the doctor for the labwork. She usually orders any labs I want to get without question.
Gabes - I think stress for me is definitely a trigger. Unfortunately, I'm a retail pharmacist. My entire eight hour shift is almost pure stress! lol. Add that on top of worrying my MC will hit and have to use the head during the long part of shift where I'm solo. Fortunately for me, my MC is not severe and that only includes a semi-solid BM once or twice and I'm back to normal again.
Bearcat wrote:She usually orders any labs I want to get without question.
Maybe she would also be willing to order the EnteroLab test panels for you. If a doctor orders them, there is a much better chance that your insurance will pay for it. A call or email to EnteroLab will get you the insurance codes if you need them.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
tex wrote:Bearcat wrote:She usually orders any labs I want to get without question.
Maybe she would also be willing to order the EnteroLab test panels for you. If a doctor orders them, there is a much better chance that your insurance will pay for it. A call or email to EnteroLab will get you the insurance codes if you need them.
Tex
Got the lab order for the IgA test. Will be going in tomorrow.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Given your work situation and stress load, I see that as more reason to give serious consideration to major changes to your eating plan.
none of us can eliminate / minimise ALL triggers - but if we eliminate / minimise as many as we can, then our bodies can cope with the others better.
the following is not said to scare you, moreso just some sage advice based on the experience of what MC'ers have shared;
- long term entocort usage is not good for you, it has major impact on your bone health (one MC'er gent, just a bronchitis and coughing can break a rib)
- some people have had to make major lifestyle changes to minimise the impact of MC/health issues on their lives - career changes, moving location to reduce stress etc.
- there are a few that never get good management of the symptoms no matter what they do this is mostly in older MC'ers
- post a stressful divorce, I spent my 30's, travelling for work (overseas in bacteria filled countries), working 60-70 hours a week. I had had IBS issues since childhood, so was gluten and lactose free 90% of the time during this period which probably saved me a bit but at Age 40 - MC hit hard. by Age 44 even with strict diet management I had 5 chronic AI issues that put me on temporary disability (unable to work) for 6 months.
With your age you have a really good probability of attaining great management and wellness via diet changes alone. and you can minimise the risk of chronic illness later in life. If you want to keep your career, knowing it will have elements of stress, diet management and relaxation management will be important.
The current medical system has not been able to help me. Doctors calling me 'complex', some doctors not willing to even take me on as a patient as i was beyond their scope. Part of the reason i contribute time on this forum, is that I dont want others to end up like this!
I have not done as much research as Tex, but i have done hours and hours and hours of research on inflammation and gut issues, methylation issues etc. Diet and fixing nutritional deficiencies is the key to wellness. there is no medication that can fix these issues.
I wish i had this information back in my 20's i could have avoided chronic health issues...
none of us can eliminate / minimise ALL triggers - but if we eliminate / minimise as many as we can, then our bodies can cope with the others better.
the following is not said to scare you, moreso just some sage advice based on the experience of what MC'ers have shared;
- long term entocort usage is not good for you, it has major impact on your bone health (one MC'er gent, just a bronchitis and coughing can break a rib)
- some people have had to make major lifestyle changes to minimise the impact of MC/health issues on their lives - career changes, moving location to reduce stress etc.
- there are a few that never get good management of the symptoms no matter what they do this is mostly in older MC'ers
- post a stressful divorce, I spent my 30's, travelling for work (overseas in bacteria filled countries), working 60-70 hours a week. I had had IBS issues since childhood, so was gluten and lactose free 90% of the time during this period which probably saved me a bit but at Age 40 - MC hit hard. by Age 44 even with strict diet management I had 5 chronic AI issues that put me on temporary disability (unable to work) for 6 months.
With your age you have a really good probability of attaining great management and wellness via diet changes alone. and you can minimise the risk of chronic illness later in life. If you want to keep your career, knowing it will have elements of stress, diet management and relaxation management will be important.
The current medical system has not been able to help me. Doctors calling me 'complex', some doctors not willing to even take me on as a patient as i was beyond their scope. Part of the reason i contribute time on this forum, is that I dont want others to end up like this!
I have not done as much research as Tex, but i have done hours and hours and hours of research on inflammation and gut issues, methylation issues etc. Diet and fixing nutritional deficiencies is the key to wellness. there is no medication that can fix these issues.
I wish i had this information back in my 20's i could have avoided chronic health issues...
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 funny you say that. There was a period of time for about two months where I worked in a cubicle doing automation stuff for the pharmacy. During those two months I didn't have a single problem. My MC issues started showing up again once I got back into the stores and being on my feet 8+ hours a day.
If you have not stopped eating those foods, then their antibody levels should be adequately high for the EnteroLab tests to reliably detect them. I would go for it with that IgA level.
Best of luck, and keep us posted.
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.