Hi everyone,
New to this, Dx in February after D started in January. Started having lower Abdomen pain during colonscopy prep. After Dx with lymphatic colitis, gastric doctor gave me lialda, 4 times daily and hyoscyamine. Still have terrible pain so prescribed levofloxacin. Little improvement-lost over 10 pounds. Have no appetite and am so stressed. Trying to go Gf. Think I just need encouragement.
Newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Sport,
Welcome to our internet family. Your comment about the lower abdominal pain originating with the colonoscopy prep, makes me wonder if your intestines may have been inflamed by the prep solution itself. That happens in some cases, and there are documented cases where the prep itself triggered the development of MC (where MC did not exist before the use of the prep solution). Hopefully, that effect (pain) will soon fade away.
If the Lialda works, it should soon begin to suppress your symptoms. But you are correct, the only way we can prevent the inflammation from returning is to change our diet to avoid the food or foods that are causing the inflammation, and gluten is the number 1 offender for most of us.
Good luck with your diet changes. They are never easy, but they work (as long as we avoid all of the foods that are causing inflammation), and diet changes are the only way to get our life back, unless we prefer to continue to use medications, for the rest of our life. And many of us find that medications won't completely stop the symptoms anyway, unless we also make diet changes, so we might as well change our diet and do without the medications, in the long run.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family. Your comment about the lower abdominal pain originating with the colonoscopy prep, makes me wonder if your intestines may have been inflamed by the prep solution itself. That happens in some cases, and there are documented cases where the prep itself triggered the development of MC (where MC did not exist before the use of the prep solution). Hopefully, that effect (pain) will soon fade away.
If the Lialda works, it should soon begin to suppress your symptoms. But you are correct, the only way we can prevent the inflammation from returning is to change our diet to avoid the food or foods that are causing the inflammation, and gluten is the number 1 offender for most of us.
Good luck with your diet changes. They are never easy, but they work (as long as we avoid all of the foods that are causing inflammation), and diet changes are the only way to get our life back, unless we prefer to continue to use medications, for the rest of our life. And many of us find that medications won't completely stop the symptoms anyway, unless we also make diet changes, so we might as well change our diet and do without the medications, in the long run.
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.
Thanks so much, Tex. I just ordered your book, but haven't had time to start reading. I don't know what started my colitis , but if it was antiobiotics, or NSAIDs for example-why is the inflammation now connected to gluten or maybe lactose and soy?
Also, is there any info about how long before I know if the lialda is working. I have been on 4/day for a little over a month. My gastric doctor is no help. Thanks!
Also, is there any info about how long before I know if the lialda is working. I have been on 4/day for a little over a month. My gastric doctor is no help. Thanks!
According to research, when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered, and that makes us vulnerable to additional food sensitivities because of what is known as molecular mimicry, due to very similar sequences in certain peptides in the amino acid chains that define the proteins in those foods that are associated with the production of antibodies by those of us who are sensitive to them.Sport wrote:I don't know what started my colitis , but if it was antiobiotics, or NSAIDs for example-why is the inflammation now connected to gluten or maybe lactose and soy?
I agree with nerdhume's doctor. If you haven't seen any benefits from Lialda after a month, it's unlikely that it will ever begin helping you. Most of the mesalamine-based medications begin to work in roughly 2 weeks or less, and rarely do they require a month or more to show results.Sport wrote:Also, is there any info about how long before I know if the lialda is working. I have been on 4/day for a little over a month. My gastric doctor is no help. Thanks!
Ask your doctor for a prescription for Entocort EC (or a generic form of budesonide). It's a much more effective treatment for MC, and using it is typically no riskier than taking Lialda.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Welcome to the group!
Your question about the Vit D3, my answer is most definitely!!
Increasing Vit d3 intake helps reduce inflammation, helps cells absorb nutrients better, and many other behind the scenes activities in our bodies.
Of all the supplements, Vit d3 provides fantastic benefit for your dollar.
I use sub lingual and highly recommend it, especially if the gut is inflamed and absorbing nutrients is compromised.
You need good levels of Vit D3 in your cells to absorb other nutrients via the gut.
Your question about the Vit D3, my answer is most definitely!!
Increasing Vit d3 intake helps reduce inflammation, helps cells absorb nutrients better, and many other behind the scenes activities in our bodies.
Of all the supplements, Vit d3 provides fantastic benefit for your dollar.
I use sub lingual and highly recommend it, especially if the gut is inflamed and absorbing nutrients is compromised.
You need good levels of Vit D3 in your cells to absorb other nutrients via the gut.
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
Take a few breathes, it can pretty full on at first, take your time to digest all this info (pun intended)
Vit d3 will help the body recover/heal from the stress and depression/anxiety.
Part of the acceptance of MC, is the reality that there is no quick fix, or guaranteed solution. No matter which you approach you take, it will take time, there will be hiccups and setbacks during the journey.
You can minimise quite a lot of the hiccups via the learnings of this group.
I followed the diet that was working for majority of the people here, and even now, over 4 years post Dx, I have not introduced salad, nor raw veges, nor legume based items back into my eating plan.
Vit d3 will help the body recover/heal from the stress and depression/anxiety.
Part of the acceptance of MC, is the reality that there is no quick fix, or guaranteed solution. No matter which you approach you take, it will take time, there will be hiccups and setbacks during the journey.
You can minimise quite a lot of the hiccups via the learnings of this group.
I followed the diet that was working for majority of the people here, and even now, over 4 years post Dx, I have not introduced salad, nor raw veges, nor legume based items back into my eating plan.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I can't help you with the test stuff, I never did entorlab testing.
I used the elimination diet and food/activity journal to identify my major triggers.
For me, stress is a bigger trigger than gluten.
When I say stress that can be,
physical stress (ie moving house, travel)
mental stress ( intense work requirements or studying for exam)
Emotional stress (family issues, death, loss of job, close friend or family Dx with serious illness etc etc)
This also links with the mast cell/histamine thing you here on here frequently.
Things like dental work, hair bleaching/dying, change of season, pollen, can trigger a reaction.
For me, three of the things mentioned above occurring at the same time is enough to cause symptoms.
I manage this by budgeting my time and energies. And eating my low inflammation easy to digest meals when these events are occurring.
I used the elimination diet and food/activity journal to identify my major triggers.
For me, stress is a bigger trigger than gluten.
When I say stress that can be,
physical stress (ie moving house, travel)
mental stress ( intense work requirements or studying for exam)
Emotional stress (family issues, death, loss of job, close friend or family Dx with serious illness etc etc)
This also links with the mast cell/histamine thing you here on here frequently.
Things like dental work, hair bleaching/dying, change of season, pollen, can trigger a reaction.
For me, three of the things mentioned above occurring at the same time is enough to cause symptoms.
I manage this by budgeting my time and energies. And eating my low inflammation easy to digest meals when these events are occurring.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
WELCOME SPORT! You are taking the right action by reading as much as you can from this great group of people and getting Tex's book. It does take some of us time to adjust to this dx and accept what we have to do to heal and feel better.
My Dx was over two years ago. I took Entocort for six month total ( it worked right away for me), but at the same time, also did an elimination diet. I took out most things I thought could be giving me problems. I was able to slowly wean off of it and never had to go back on. I although I am still gluten, dairy, and soy free, I have been able to add many foods back into my diet with success. There is hope :)
I am one of those who have IgA deficienty and didn't know it when I spent the money on the Enterolab tests. They didn't work at all for me, so it is a good idea to ask your doc for the simple blood test first. Once you get the Ok and send your stool sample in, it takes about three weeks to get the results. In the mean time, you might want to limit eating RAW fruits and veggies, caffeine, citrus, tomato, spicy, and beans and legumes for now. They are very irritating to an inflamed gut. I would also remove gluten and dairy . Doing these things will help speed your recovery. You can always test them back in down the road.
Ask anything and keep us posted
Leah
My Dx was over two years ago. I took Entocort for six month total ( it worked right away for me), but at the same time, also did an elimination diet. I took out most things I thought could be giving me problems. I was able to slowly wean off of it and never had to go back on. I although I am still gluten, dairy, and soy free, I have been able to add many foods back into my diet with success. There is hope :)
I am one of those who have IgA deficienty and didn't know it when I spent the money on the Enterolab tests. They didn't work at all for me, so it is a good idea to ask your doc for the simple blood test first. Once you get the Ok and send your stool sample in, it takes about three weeks to get the results. In the mean time, you might want to limit eating RAW fruits and veggies, caffeine, citrus, tomato, spicy, and beans and legumes for now. They are very irritating to an inflamed gut. I would also remove gluten and dairy . Doing these things will help speed your recovery. You can always test them back in down the road.
Ask anything and keep us posted
Leah
The test is to verify that your body produces normal amounts of IgA. The medical name for the condition is Selective IgA Deficiency. IOW, if you cannot produce normal amounts of IgA, then you have Selective IgA deficiency. Just ask your doctor to order a blood test that will make sure that you do not have Selective IgA Deficiency.Sport wrote:If I'm understanding correctly, I need to test for iga before the enterolab tests. Is that right?
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.