Hello fellow MC-ers:
My D is back with a vengeance. I had been doing ok for the last year or so after eliminating gluten, onions, garlic and milk and eating mostly chicken, rice and vegetables. But I went on vacation with my family and for a week ate much of what everyone else did - bread, onions, garlic, wheat crackers, RUM! Why oh why did I deny what I should know by now? Since mid-February I have been in a nose dive with out of control symptoms - very difficult to function normally. I tried lomotil, bentyl and pepto-bismol, all things that used to work for me in the past but now no luck. So I begged my dr for budesonide. She has reluctantly agreed to put me on 3x/1 week, 2x/1 week, 1x/1 week, nothing/week. I started today and took 3 capsules.
I want to do Enterolab testing and I just read on this forum that once I am on budesonide I have to wait 6 months before having testing done. I am not sure I can wait that long. I do not feel like I can talk to my doctor. She is not receptive to Enterolab or anything that does not fit in the structure of her traditional practice. Needless to say, I am looking for a new dr.
My question: Should I stop the budesonide right now and do the lab testing and then start the budesonide again?
I am so appreciative of this forum and the members. Anyone have any thoughts?
Enterolab testing and budesonide
Moderators: Rosie, JFR, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
I'm sorry that you're having to deal with a relapse of symptoms. But the good news is that unless you have selective IgA deficiency, the EnteroLab tests will work just fine for you. You would have to take budesonide for at least 3 or 4 months for it to have a significant effect on your antibody production, and in most cases the tests will still work reliably unless budesonide has been used for more than 6 or 8 months. A few weeks or so will have no significant effect on the accuracy of the tests.
It's certainly possible that you may now have additional food sensitivities that you did not have the first time around, and the EnteroLab tests will help to pinpoint them. I recently developed a sensitivity to soy, that I found by ordering an EnteroLab test last September after I had a reaction from eating peanuts. I did a test about 7 or 8 years ago and it was negative for soy back then.
Good luck with the tests.
Tex
I'm sorry that you're having to deal with a relapse of symptoms. But the good news is that unless you have selective IgA deficiency, the EnteroLab tests will work just fine for you. You would have to take budesonide for at least 3 or 4 months for it to have a significant effect on your antibody production, and in most cases the tests will still work reliably unless budesonide has been used for more than 6 or 8 months. A few weeks or so will have no significant effect on the accuracy of the tests.
It's certainly possible that you may now have additional food sensitivities that you did not have the first time around, and the EnteroLab tests will help to pinpoint them. I recently developed a sensitivity to soy, that I found by ordering an EnteroLab test last September after I had a reaction from eating peanuts. I did a test about 7 or 8 years ago and it was negative for soy back then.
Good luck with the tests.
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 your quick response, Tex. I will go ahead with the tests and not worry. I have wondered if I have developed new sensitivities as absolutely nothing seems to sit well lately. Thank God for this forum. I have been at my wit's end and reading these posts seems to provide the only light in this tunnel. It's very nice to hear from you at midnight on a Saturday night!
Hi,
On the board we find 3-4-5-6 months total stay on budesonide is pretty effective. Anything less than 3 months can lead to high risk of relapse.
Also, I was an budesonide user--I stepped down to lower dose when I got constipated or solid stool for several days.
Welcome, budesonide kicked in for me after about 3 days.
Brandy
Is it week or month for budesonide? If week that is generally not long enough to be effective. i.e. 3 weeks total?She has reluctantly agreed to put me on 3x/1 week, 2x/1 week, 1x/1 week, nothing/week.
On the board we find 3-4-5-6 months total stay on budesonide is pretty effective. Anything less than 3 months can lead to high risk of relapse.
Also, I was an budesonide user--I stepped down to lower dose when I got constipated or solid stool for several days.
Welcome, budesonide kicked in for me after about 3 days.
Brandy
Uh-oh! I just noticed that you live in Maryland. Unless the state law has recently been changed, Maryland is one of 2 states (NY is the other) where the legislators (in their infinite wisdom) believe that private citizens should not have the right to take responsibility for their own health and so they have passed laws forbidding private citizens from ordering medical lab tests directly from any lab. Only doctors licensed in those respective states can order lab tests.
Of course what really happened in these cases is that the legislatures caved in to lobbying efforts by the 2 states' medical organizations in order to grant a monopoly to physicians regarding the ordering of lab tests.
Many members here have found ways around those oppressive laws by having friends or family members in adjacent states order the tests for them (in the name of the member who needs the test, but with the out of state delivery address). Then after the sample is ready to be sent back to the lab (frozen) it as to be shipped (again from outside the state of Maryland or NY).
Members who do not have friends or relatives living nearby in adjacent states have usually been able to find another member of this discussion forum who is willing to help with the ordering and shipping the sample back.
I'm sorry that this is the case, because it means that if a physician is not willing to order these tests (and many of them are not willing) then the state effectively forbids their residents from looking out for their own health. IMO these are very cruel and unacceptable laws.
Tex
Of course what really happened in these cases is that the legislatures caved in to lobbying efforts by the 2 states' medical organizations in order to grant a monopoly to physicians regarding the ordering of lab tests.
Many members here have found ways around those oppressive laws by having friends or family members in adjacent states order the tests for them (in the name of the member who needs the test, but with the out of state delivery address). Then after the sample is ready to be sent back to the lab (frozen) it as to be shipped (again from outside the state of Maryland or NY).
Members who do not have friends or relatives living nearby in adjacent states have usually been able to find another member of this discussion forum who is willing to help with the ordering and shipping the sample back.
I'm sorry that this is the case, because it means that if a physician is not willing to order these tests (and many of them are not willing) then the state effectively forbids their residents from looking out for their own health. IMO these are very cruel and unacceptable laws.
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.
Brandy, yes it is for 3 weeks. I understand your concern, and I have it too. But at this point I am really desperate and my dr is fairly rigid. I have taken budesonide before and it has always worked for me. I’m hoping this will help me now.
Tex, I did not realize that Maryland had that issue. I have read about NY and thought that was the only state. I will ask both my gastro and internist if they will order the tests, if only to see their responses. Otherwise I have a friend in Virginia that I can enlist. It will just entail a lot of extra driving, grrrrr.
Many thanks for both of your thoughtful responses.
Weezie
Tex, I did not realize that Maryland had that issue. I have read about NY and thought that was the only state. I will ask both my gastro and internist if they will order the tests, if only to see their responses. Otherwise I have a friend in Virginia that I can enlist. It will just entail a lot of extra driving, grrrrr.
Many thanks for both of your thoughtful responses.
Weezie
Enterolabs-Maryland
Have the shipping to Maryland/New York laws changed yet for Enterolabs?
I believe I can get my GP to request the stool kit if not.
Thanks Team!
I believe I can get my GP to request the stool kit if not.
Thanks Team!
I don't believe the laws have changed, but if your doctor orders the tests, you will be exempt from the laws, and your insurance is more likely to cover the cost of the tests.
You're very welcome.
Tex
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.
I’m 3 weeks into my Budesonide therapy. Do you think it’s too late to request a stool panel workup from Eterolabs? I eat a hard boiled egg every day and it doesn’t bother me. I drink Almond milk everyday and it doesn’t bother me. I’m more concerned with Gluten intake due to our sensitivity to it now, even though as most, I showed no markers of Celiacs disease. Gluten and soy sensitivity are my biggest concerns to the correct path of healing properly if I’m sensitive to it, but aren’t showing any immediate signals, or flares from a variety of foods I still eat? I lost 50lbs since my symptoms worsened and MC went undiagnosed for 8 months. I’m 5’6” and weigh 142, but lost a lot of muscle tone to the point of being able to see my ribs and loss of energy and any motivation to start working out again. I suffer from anxiety and depression now, which IMO is related to Adrenal Fatigue and stress. I’ve seen and had blood tests by an Endocrinologist and all markers were normal except Testosterone levels. Antidepressant do not help, in fact they have the opposite affect on me. Make me more jittery and anxious?
Thanks again!
Thanks again!
3 weeks is not a problem. The test results at Enterolab should be valid for several months after starting budesonide. After a few months, some of the tests may begin to show false negative results because of budesonide beginning to suppress the immune system somewhat. Gluten sensitivity tests at EnteroLab are valid for much longer.
If you have MC and anxiety symptoms, it's very likely that a chronic magnesium deficiency is causing the anxiety symptoms. Been there, done that. Doctors never, ever catch a magnesium deficiency. We have to figure it out for ourselves. MC depletes magnesium, and so do many meds. Even coffee depletes it. Once we're deficient, it's unlikely that our diet supplies enough magnesium to ever rebuild our reserves. So it just gets worse, usually. Magnesium deficiency also affects our ability to produce hormones. That's almost surely what compromised your ability to produce T.
Tex
If you have MC and anxiety symptoms, it's very likely that a chronic magnesium deficiency is causing the anxiety symptoms. Been there, done that. Doctors never, ever catch a magnesium deficiency. We have to figure it out for ourselves. MC depletes magnesium, and so do many meds. Even coffee depletes it. Once we're deficient, it's unlikely that our diet supplies enough magnesium to ever rebuild our reserves. So it just gets worse, usually. Magnesium deficiency also affects our ability to produce hormones. That's almost surely what compromised your ability to produce T.
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.
Just received my blood panel results from Boston Heart, done through my Diet/Nutritionalist office. Actually my Magnesium levels were elevated! I took this blood draw prior to starting on extra Magnesium intake after reading many comments on your forum pertaining to such. My nutritionalist said high Magnesium levels means low zinc levels, as they work to balance each other. I also tested deficient in Oleic Acid and Copper levels. I feel from all the health stress (MC), my Adrenals are Fatigued, causing me to feel “fight or flight” all the time. Thanks Tex!
Newbie with ? about Enterolab Testing (and everything else)
Hello! Happy 2018!
I've been on a full dose of Budesonide since mid-September. I was feeling okay and BMs were usually loose but not D. My doctor wanted me to eat plenty of gluten for an endoscopy to test for Celiac, so I haven't changed my diet (other than low fiber...few veggies and fewer fruits). Not a great diet at all. Anyway, I was getting along okay and tests were negative for Celiac. I am still on the full dose of Budesonide, but have started to have watery D again. Needless to say, I am very concerned and am ready to commit to a strict diet and get well! After reading this forum, I see that it is the only way.
Is the Enterolab testing okay to do right now, while beginning to flare and after having been on Budesonide for 3.5 months? If not, then when?
I have begun the healing diet, phase I. How long would I need to be on it do see a change or at least know if I am reacting to the foods on it?
Is it normal to flare while on Budesonide? Should I continue it? My doctor will be of no use on this topic. (I have 2 months left on my prescription.) Now that I tested negative for Celiac, he doesn't really seem to concerned with me.)
I have had allergies and chronic hives in the past. Does it make it more likely that histamine is an issue for me? What antihistimines should I think about trying...or should I?
Desperate not to go into a debilitating flare again. Thank you so much for your help and support! This forum is all that is keeping me going. I'm so scared that I won't regain my health/life, and with 3 beautiful daughters to raise that is just not an option!
Thanks-
Marsha
I've been on a full dose of Budesonide since mid-September. I was feeling okay and BMs were usually loose but not D. My doctor wanted me to eat plenty of gluten for an endoscopy to test for Celiac, so I haven't changed my diet (other than low fiber...few veggies and fewer fruits). Not a great diet at all. Anyway, I was getting along okay and tests were negative for Celiac. I am still on the full dose of Budesonide, but have started to have watery D again. Needless to say, I am very concerned and am ready to commit to a strict diet and get well! After reading this forum, I see that it is the only way.
Is the Enterolab testing okay to do right now, while beginning to flare and after having been on Budesonide for 3.5 months? If not, then when?
I have begun the healing diet, phase I. How long would I need to be on it do see a change or at least know if I am reacting to the foods on it?
Is it normal to flare while on Budesonide? Should I continue it? My doctor will be of no use on this topic. (I have 2 months left on my prescription.) Now that I tested negative for Celiac, he doesn't really seem to concerned with me.)
I have had allergies and chronic hives in the past. Does it make it more likely that histamine is an issue for me? What antihistimines should I think about trying...or should I?
Desperate not to go into a debilitating flare again. Thank you so much for your help and support! This forum is all that is keeping me going. I'm so scared that I won't regain my health/life, and with 3 beautiful daughters to raise that is just not an option!
Thanks-
Marsha
Hashimoto's
Allergies
Chronic Hives
Lymphocytic Colitis
Allergies
Chronic Hives
Lymphocytic Colitis
Hi Marsha,
Welcome to the forum. Budesonide is helpful, but it doesn't work for everyone. True it will help suppress inflammation, but the inflammation continues to be regenerated with each meal until you eliminate gluten from your diet and whatever else you're sensitive to by now (because of the gluten). And then it takes a while for the gluten (anti-gliadin) antibodies to decline so that your intestines can begin healing. Continuing to eat gluten after you were already reacting to it probably lengthened the time that will be required to get to remission (because of the additional damage to your intestines and the higher antibody level that it caused). A celiac diagnosis doesn't change anything anyway, because properly treating MC will treat celiac disease. A celiac diagnosis is a "so what" diagnosis after you have an MC diagnosis.
Every newbie wants to know how soon they will see improvement after they are on the diet. That depends on a lot of things, and everyone is different. It could be anywhere from a couple of days to a year or more. It mostly depends on how much damage has been done to your intestines and how strict and restrictive you are with your recovery diet. Gluten must be avoided 100 % of the time, even tiny trace amounts. Avoiding all processed foods (even GF foods) and eating a very simple diet of only a few safe, bland, foods will speed up your recovery. Avoiding any medications that trigger MC for you is a must, or you will be defeated before you start. If you continue to take budesonide it will probably shorten your time to remission significantly, but it will also mast some of your food sensitivities so that you will not be able to detect them until after you wean off the drug.
The EnteroLab tests will still work fine at this point. But after a few more months on Budesonide, they may not work as reliably.
Yes, IMO you will probably have histamine issues (if you don't already have them). Any OTC antihistamine that gives you good results can be used. For example, I thought that Clariton didn't work well for me (for regular pollen allergy symptoms), so I switched to Allegra. But some members use Zertec,
Don't worry, you seem motivated, and motivated people are far more likely to get their life back from MC. Try to minimize stress, because it can also trigger MC. Put your own health first, take life a day at a time, be very careful with everything you put in your mouth, and one of these days you will realize that you are feeling better than you have felt in many years.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to the forum. Budesonide is helpful, but it doesn't work for everyone. True it will help suppress inflammation, but the inflammation continues to be regenerated with each meal until you eliminate gluten from your diet and whatever else you're sensitive to by now (because of the gluten). And then it takes a while for the gluten (anti-gliadin) antibodies to decline so that your intestines can begin healing. Continuing to eat gluten after you were already reacting to it probably lengthened the time that will be required to get to remission (because of the additional damage to your intestines and the higher antibody level that it caused). A celiac diagnosis doesn't change anything anyway, because properly treating MC will treat celiac disease. A celiac diagnosis is a "so what" diagnosis after you have an MC diagnosis.
Every newbie wants to know how soon they will see improvement after they are on the diet. That depends on a lot of things, and everyone is different. It could be anywhere from a couple of days to a year or more. It mostly depends on how much damage has been done to your intestines and how strict and restrictive you are with your recovery diet. Gluten must be avoided 100 % of the time, even tiny trace amounts. Avoiding all processed foods (even GF foods) and eating a very simple diet of only a few safe, bland, foods will speed up your recovery. Avoiding any medications that trigger MC for you is a must, or you will be defeated before you start. If you continue to take budesonide it will probably shorten your time to remission significantly, but it will also mast some of your food sensitivities so that you will not be able to detect them until after you wean off the drug.
The EnteroLab tests will still work fine at this point. But after a few more months on Budesonide, they may not work as reliably.
Yes, IMO you will probably have histamine issues (if you don't already have them). Any OTC antihistamine that gives you good results can be used. For example, I thought that Clariton didn't work well for me (for regular pollen allergy symptoms), so I switched to Allegra. But some members use Zertec,
Don't worry, you seem motivated, and motivated people are far more likely to get their life back from MC. Try to minimize stress, because it can also trigger MC. Put your own health first, take life a day at a time, be very careful with everything you put in your mouth, and one of these days you will realize that you are feeling better than you have felt in many years.
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.