Dear MC colleagues,
I have a lot of questions! I was diagnosed with LC in januari 2011 and i am a member since a few years, but in fact I am a newbee.
I used entocort from the beginning, stopped after half a year and had no symptoms. In march 2012 I had a relapse en started again (9 mg a day, later 3 mg), which was helpfull in the beginning and there was a period evrything went well with 3 mg in 2 days. I didn't succeed to stop totally and needed more frequently more entocort.
The winters of 2012/2013 and 2013/2014 I had a lot of problems (continous flu,soar throat, inflammation of the middle ear, sinusitis,etc), last winter I needed 2 times antibiotics (after more than 25 years).
My internist tested me in april 2014 for gluten and it was negative. a month ago he suggested that I should try glutenfree for 2,3 weeks. After 1 day there was already a positive difference in my D and after 3 days it was obvious that my gf diet worked!
Since that moment I looked a lot at the forum and learned a lot from you! Thank you so much therefore. I ordered Tex' book, got it a few days ago and have read it. A lot becomes clear to me, but also there rises a lot of questions!
I stopped antocort a week ago. After reading the book, I know now this was to quick, should have been better to slow down.
But I want to do evrything with a diet and don't want to use entocort anymore, because I think my immuumproblems are for a great part due tot entocort. Do you think this is a true conclusion?
I know now (from the book) that I can expect a relapse, after 1 month without gluten, and then I have to find out what other foodsensitivities I might have. I think I try then the BRAT-diet. Do you think this is a good idea?
Shall I do the enterolabtesting? Is that possible from the Netherlands? I know I can expect false negative outcomes, but how big is that chance? What does it cost? I should like to hear your experiences.
Does anybody have experience with female hormons? I use them since 3 years (estradiol and dydrogesteron).
Sometimes I use migrafin (lysine-acetylsalicylaat and metoclopramide) for migraine. Does anyone know:is this a 'no no' medicine?
After 4 years of ignoring my LC, I feel the need to change my life, but I really have to get used to the idea.
At last, Tex, thank you very much for your book. I's an eyeopener for me.
I would really appreciate it, if I get reactions, I will be glad with evrything, thank you in advance,
Sonja
Learning a lot from all of you!!!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Sonja- I am also new to the forum and fairly new to the diagnosis of CC (just since November) but I have been pretty sick with it for many years. I don't have answers to many of your questions, but I am looking forward to read what others say in reply to you. I am also planning to do the Enterolab testing as soon as I can pay for it- or hopefully get my Dr. to order it so I might have help from insurance with it.
Iam unable to take enterocort because I had a bad reaction to it.
I am also new to the GF diet- and I know a lot of people get migranes as a symptom to a food sensitivity- it's possible that you may not get migraines after you get that problem food out of your diet - so maybe the drug migrafin isn't even a question. Let's hope!
I think the BRAT diet is bananas, rice, applesauce and toast. Lots of people have different problems with different foods- so really it will be up to you to learn what will and won't work for you. I just had a bowl of unsweetened applesauce, and it is my only fruit food and only sweet treat in my current very restricted diet. But some people don't do well with that amount of sugar. The bananas are a food that is rather high in histamine- and for me, I'm currently avoiding those foods. When I start reintroducing foods- I think bananas will top my list. Toast, if it's a gluten bread- of course that is not something you should eat. Rice is pretty safe for almost everyone- (white rice without the high fiber hulls like brown rice.)
-Sarah
Iam unable to take enterocort because I had a bad reaction to it.
I am also new to the GF diet- and I know a lot of people get migranes as a symptom to a food sensitivity- it's possible that you may not get migraines after you get that problem food out of your diet - so maybe the drug migrafin isn't even a question. Let's hope!
I think the BRAT diet is bananas, rice, applesauce and toast. Lots of people have different problems with different foods- so really it will be up to you to learn what will and won't work for you. I just had a bowl of unsweetened applesauce, and it is my only fruit food and only sweet treat in my current very restricted diet. But some people don't do well with that amount of sugar. The bananas are a food that is rather high in histamine- and for me, I'm currently avoiding those foods. When I start reintroducing foods- I think bananas will top my list. Toast, if it's a gluten bread- of course that is not something you should eat. Rice is pretty safe for almost everyone- (white rice without the high fiber hulls like brown rice.)
-Sarah
Sonja,
You are fortunate to have a doctor who recognizes that gluten sensitivity is possible without a positive celiac test result. Most doctors are not that open-minded. Most doctors mistakenly believe that the blood test for celiac disease is reliable.
Entocort (budesonide) can weaken our immune system and lower our resistance to infections if we take it for 6 months or more. This can cause us to more easily develop colds, sore throat, flu (influenza), or sinus infections.
It's possible to order the EnteroLab tests from the Netherlands, but if you have been using budesonide for over a year, you might receive many false negative results. If my memory is correct, the lab recommends waiting for at least 6 months after discontinuing the use of budesonide, before ordering any stool tests. However, except for gluten, most food sensitivities will probably be detectable again after about 3 or 4 months, in my opinion. If your sensitivity to them is high, the lab tests might be able to detect them after about a 2-month wait. It won't matter if the gluten test shows a negative result, because you already know that you are sensitive to gluten.
However, since you could see an improvement when you removed gluten from your diet, that means that you are probably producing enough antibodies to gluten for the EnteroLab test to show a positive result. And it also suggests that the budesonide may not have been suppressing your immune system enough to prevent the other tests from showing valid results. If you have been taking only a low rate of budesonide for the last 6 months, for example, it might have been low enough that it will not prevent your EnteroLab test results from being correct. It's impossible to know for sure. We can only guess, because each of us is different, and our immune systems respond differently.
Sarah is correct that gluten sensitivity or other food sensitivities can cause migraines, and the migraines usually stop after we change our diet to avoid the food sensitivities. I had very bad migraines back before I changed my diet, but after I began to heal, the migraines stopped and I have never had another one since then (that was about 10 years ago).
Unfortunately migrafin contains a derivative of salicylic acid. For many people, NSAIDs can cause inflammatory bowel disease (including LC). Here is a quote from the PDF article at the link below:
But as Sarah said, you probably will not need the migrafin after your intestines heal.
Hormones do affect LC. Many women find that if they use hormone replacement therapy, it prevents them from being able to maintain remission from their LC symptoms. It's probably too soon to be concerned about that now, but if you cannot maintain remission from LC after removing all of your food sensitivities from your diet, then you may have to consider changes in your hormone replacement treatment program.
Thank you for the kind words about the book. I'm very glad that it has been helpful.
Tex
You are fortunate to have a doctor who recognizes that gluten sensitivity is possible without a positive celiac test result. Most doctors are not that open-minded. Most doctors mistakenly believe that the blood test for celiac disease is reliable.
Entocort (budesonide) can weaken our immune system and lower our resistance to infections if we take it for 6 months or more. This can cause us to more easily develop colds, sore throat, flu (influenza), or sinus infections.
It's possible to order the EnteroLab tests from the Netherlands, but if you have been using budesonide for over a year, you might receive many false negative results. If my memory is correct, the lab recommends waiting for at least 6 months after discontinuing the use of budesonide, before ordering any stool tests. However, except for gluten, most food sensitivities will probably be detectable again after about 3 or 4 months, in my opinion. If your sensitivity to them is high, the lab tests might be able to detect them after about a 2-month wait. It won't matter if the gluten test shows a negative result, because you already know that you are sensitive to gluten.
However, since you could see an improvement when you removed gluten from your diet, that means that you are probably producing enough antibodies to gluten for the EnteroLab test to show a positive result. And it also suggests that the budesonide may not have been suppressing your immune system enough to prevent the other tests from showing valid results. If you have been taking only a low rate of budesonide for the last 6 months, for example, it might have been low enough that it will not prevent your EnteroLab test results from being correct. It's impossible to know for sure. We can only guess, because each of us is different, and our immune systems respond differently.
Sarah is correct that gluten sensitivity or other food sensitivities can cause migraines, and the migraines usually stop after we change our diet to avoid the food sensitivities. I had very bad migraines back before I changed my diet, but after I began to heal, the migraines stopped and I have never had another one since then (that was about 10 years ago).
Unfortunately migrafin contains a derivative of salicylic acid. For many people, NSAIDs can cause inflammatory bowel disease (including LC). Here is a quote from the PDF article at the link below:
NAAM VAN HET GENEESMIDDEL -Migrafin, poeder voor oraal gebruikNSAID’s dienen met voorzichtigheid gebruikt te worden bij patiënten met gastro-intestinale ziekten in de anamnese (ulceratieve colitis, ziekte van Crohn), omdat deze aandoeningen kunnen verergeren (zierubriek 4.8).
But as Sarah said, you probably will not need the migrafin after your intestines heal.
Hormones do affect LC. Many women find that if they use hormone replacement therapy, it prevents them from being able to maintain remission from their LC symptoms. It's probably too soon to be concerned about that now, but if you cannot maintain remission from LC after removing all of your food sensitivities from your diet, then you may have to consider changes in your hormone replacement treatment program.
Thank you for the kind words about the book. I'm very glad that it has been helpful.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Sarah,
This is strictly my theory, but I'm convinced that it's reasonably accurate, based on my own experience, and research:
Bananas are only a high-histamine food after they have completely ripened, or after they are over-ripe. Bananas that are just barely ripe, usually do not cause any problems for me. If they begin to develop brown spots, I avoid them, because they may be too ripe and they will have a higher histamine content. The larger the brown spots, the higher the histamine content.
We all have different histamine reaction thresholds, and it's impossible to totally avoid histamine (because it's used by the digestive system to regulate certain digestive processes). We just have to limit the total amount of histamine that we ingest on any given day, so that the total accumulated amount does not exceed our own personal threshold after which a reaction may be triggered.
Tex
This is strictly my theory, but I'm convinced that it's reasonably accurate, based on my own experience, and research:
Bananas are only a high-histamine food after they have completely ripened, or after they are over-ripe. Bananas that are just barely ripe, usually do not cause any problems for me. If they begin to develop brown spots, I avoid them, because they may be too ripe and they will have a higher histamine content. The larger the brown spots, the higher the histamine content.
We all have different histamine reaction thresholds, and it's impossible to totally avoid histamine (because it's used by the digestive system to regulate certain digestive processes). We just have to limit the total amount of histamine that we ingest on any given day, so that the total accumulated amount does not exceed our own personal threshold after which a reaction may be triggered.
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 Sonja . Well, it certainly sounds like you should not be eating gluten at all. If you can't do the Enterolab testing yet, then you can probably get healing results from avoiding the next two highest risk foods for us MCers…. Dairy and Soy. Most of us have more then just gluten that we have to avoid. And because you have been suffering with symptoms for so long, the likelihood of multiple food intolerances is higher. You also want to avoid fiber for now. That includes RAW fruits and veggies ( cook veggies well), brown rice, salad, beans and legumes. There are other irritants like sugar and acidy foods that could also make a difference in how fast you heal. We all know how hard it is to restrict our diet so much, but it's worth it. Later, down the road when you have healed your gut, you can test the "irritant" foods back into your diet. I have been able to add many foods back in :)
Hormones must have an effect because currently, i am taking the drug Tamoxifen ( which BLOCKS estrogen) and my stools have never been more formed and firm.
I hope you find your diet answers soon and start your journey to TRUE healing
leah
Hormones must have an effect because currently, i am taking the drug Tamoxifen ( which BLOCKS estrogen) and my stools have never been more formed and firm.
I hope you find your diet answers soon and start your journey to TRUE healing
leah
Hi Sarah,
Thank you for your answer. Its good to know that I'm definitely not the only one, who is strugling with learning what diet will fit best. I like to have evrything under control, but thats not possible at the moment.
The t in brat is for tea, I think. A little bit less attractive! Good to know for both of us what Tex is saying about banana's. My migraines are stressrelated, but maybe they also food related.
I think maybe you are lucky for having a bad reaction on entocort, because it only masks the symptoms and doesn't cure our MC. By using so long entocort, I only made it worse.
I hope we can support each other in the coming period. I trie to add a picture to my profile, it makes it more personal. sorry for my bad english!
Sonja
Thank you for your answer. Its good to know that I'm definitely not the only one, who is strugling with learning what diet will fit best. I like to have evrything under control, but thats not possible at the moment.
The t in brat is for tea, I think. A little bit less attractive! Good to know for both of us what Tex is saying about banana's. My migraines are stressrelated, but maybe they also food related.
I think maybe you are lucky for having a bad reaction on entocort, because it only masks the symptoms and doesn't cure our MC. By using so long entocort, I only made it worse.
I hope we can support each other in the coming period. I trie to add a picture to my profile, it makes it more personal. sorry for my bad english!
Sonja
Hi Tex.
Thank you very much for your answer. I admire your ability to respond again and again to new members!
You are right about my doctor, but on the other hand he told me, when I was diagnosed with LC 4 years ago, that it certainly had nothing to do with foodsensitivity. That answer have been 'putting me on the wrong leg' (this is Dutch and means that I toke this message too serious).
I think that my doctor knows about the newest things, maybe your book and forum. I'll ask him.
I toke rather much Entocort, especially for the last year, so I think its better to wait with te enterolabtesting.
Despite my antiflu-injection in oktober I'm since 4 weeks suffering with flulikecomplaints again. This helps me in my decision not to use entocort anymore.
My migraine is stress related, but my LC probably also! The last year I have been avoiding stress with rather much success!
I'm glad with your advise to wait with lowering the hormons. I already tried it, but it didn't work well. I think its better for me to do 1 thing at a time and that is definitely gf for the moment!
Thank you again.
Sonja
Tex[/quote]
Thank you very much for your answer. I admire your ability to respond again and again to new members!
You are right about my doctor, but on the other hand he told me, when I was diagnosed with LC 4 years ago, that it certainly had nothing to do with foodsensitivity. That answer have been 'putting me on the wrong leg' (this is Dutch and means that I toke this message too serious).
I think that my doctor knows about the newest things, maybe your book and forum. I'll ask him.
I toke rather much Entocort, especially for the last year, so I think its better to wait with te enterolabtesting.
Despite my antiflu-injection in oktober I'm since 4 weeks suffering with flulikecomplaints again. This helps me in my decision not to use entocort anymore.
My migraine is stress related, but my LC probably also! The last year I have been avoiding stress with rather much success!
I'm glad with your advise to wait with lowering the hormons. I already tried it, but it didn't work well. I think its better for me to do 1 thing at a time and that is definitely gf for the moment!
Thank you again.
Sonja
Tex[/quote]
Hi Leah,
Thank you for your answer. Your advise is really for a great part similar to what I have been thinking about my diet in the coming times. If my problems returns I will skip the dairy first, I thougt. But maybe its better to skip dairy and soy at the same time.
I have to get used to the idea that i have a foodsensitivityproblem.....that is not easy.
Good to hear about the hormones. I keep that in mind; at the moment its not possible for me to stop, but I'll try again after some time.
Sonja
Thank you for your answer. Your advise is really for a great part similar to what I have been thinking about my diet in the coming times. If my problems returns I will skip the dairy first, I thougt. But maybe its better to skip dairy and soy at the same time.
I have to get used to the idea that i have a foodsensitivityproblem.....that is not easy.
Good to hear about the hormones. I keep that in mind; at the moment its not possible for me to stop, but I'll try again after some time.
Sonja
Sonja,
If you will email a photo image file to me, I would be happy to convert it into an avatar and upload it to your profile for you. You can send me an email by clicking on the email button at the bottom of this message.
Tex
If you will email a photo image file to me, I would be happy to convert it into an avatar and upload it to your profile for you. You can send me an email by clicking on the email button at the bottom of this message.
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.