Intro and Question
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Ok. Thank you both. I am ready to go gluten free. I am dairy free and soy free already. What do you do in the interim? Do I take meds while changing diet? Do I go med free right away? I was up to 12-15 Imodium prior to cholestyramine. Not an option. Is there anyway I can estimate how long before I get the toxins our? I only get excema during flare up and it's clear they are related. I am all in with diet change starting today but still need help with fatigue and being tied to my house? Should I take rx for like 2 weeks? I am right about the steroids right? No no no
This was not how I expected to spend my golden years.
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Gabes-Apg
- Emperor Penguin
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- Location: Hunter Valley NSW Australia
If it was me I would stick with the meds while you figure out a safe eating plan.
Once you remove gluten it can take a few weeks/couple of months for the inflammation to settle down, all depends how long you have had inflammation.
Try to stick with bland, well cooked meals. No salad, no raw fruit, no spices.
Avoid greens (broccoli/beans) for now.
Soups and stews are a good option.
Are you taking any other medications? SSRI, ibruprofen, NSAIDs, statins, PPI's, are some of the meds that can make MC worse, and many have vast improvement once these meds are no longer taken.
It can sem a bit full on at first, take it a day at a time. Make changes gradually, there are loads of meal ideas in dees kitchen section. And as you read posts where elimination diet is discussed you will see lots of easy meal ideas.
Home made bone broth is awesome, it is full of good nutrients, has mega gut healing properties, make this and use it as the base of cooking and you will see improvement within weeks. If you search for bone broth you will see discussions of how many gained benefit... And how to make it!,
Good luck!!
Once you remove gluten it can take a few weeks/couple of months for the inflammation to settle down, all depends how long you have had inflammation.
Try to stick with bland, well cooked meals. No salad, no raw fruit, no spices.
Avoid greens (broccoli/beans) for now.
Soups and stews are a good option.
Are you taking any other medications? SSRI, ibruprofen, NSAIDs, statins, PPI's, are some of the meds that can make MC worse, and many have vast improvement once these meds are no longer taken.
It can sem a bit full on at first, take it a day at a time. Make changes gradually, there are loads of meal ideas in dees kitchen section. And as you read posts where elimination diet is discussed you will see lots of easy meal ideas.
Home made bone broth is awesome, it is full of good nutrients, has mega gut healing properties, make this and use it as the base of cooking and you will see improvement within weeks. If you search for bone broth you will see discussions of how many gained benefit... And how to make it!,
Good luck!!
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 Beeka,
There is a lot of difference in steroids. Prednisone, for example, is a bad choice. Entocort, on the other hand, is much safer because only up to about 19 % of it is absorbed into the bloodstream, so it takes much longer for it to affect the adrenals and/or increase the risk of osteoporosis or other side effects so common with the other corticosteroids. Uceris is another option. The manufacturer claims that none of it is absorbed into the bloodstream, thereby eliminating the usual risks so common with the corticosteroids.
It takes a long time to get the effects of gluten out of our immune system, because the antibodies have an extremely long half-life — 120 days. Most other foods cause the production of antibodies that have a half-life of only about 6 days, by comparison. Therefore, it takes a while for the gut to heal from the damage caused by gluten. We reach remission long before the intestines completely heal, but it still usually takes at least several months or longer for most of us to reach remission, by diet changes alone. A few of us are lucky, and they reach remission after only a week or so on the diet, but most of us take much longer, especially if we have been reacting for a long time, as Gabes pointed out.
If your symptoms are so severe that you need to stop them quickly, then a prescription for Entocort will allow you to live a relatively normal life while the diet changes are healing your intestines. Entocort will usually bring a significant amount of relief within a few days to a week or so after beginning to take it, but most physicians want to stop the treatment too soon to allow the gut to heal, and that triggers a relapse. Entocort works best with the diet, if it is used for 4 to 6 months or more, and then the dosage should be tapered very, very slowly (over many weeks) in order to prevent the mast cell rebound effect that occurs if it is discontinued too abruptly.
Most of the other medications that are prescribed to treat MC are hardly worth considering except in special cases. The corticosteroids do not speed up healing (in fact, they slow down healing slightly), but they can make life much easier while the diet changes are healing the gut.
Tex
There is a lot of difference in steroids. Prednisone, for example, is a bad choice. Entocort, on the other hand, is much safer because only up to about 19 % of it is absorbed into the bloodstream, so it takes much longer for it to affect the adrenals and/or increase the risk of osteoporosis or other side effects so common with the other corticosteroids. Uceris is another option. The manufacturer claims that none of it is absorbed into the bloodstream, thereby eliminating the usual risks so common with the corticosteroids.
It takes a long time to get the effects of gluten out of our immune system, because the antibodies have an extremely long half-life — 120 days. Most other foods cause the production of antibodies that have a half-life of only about 6 days, by comparison. Therefore, it takes a while for the gut to heal from the damage caused by gluten. We reach remission long before the intestines completely heal, but it still usually takes at least several months or longer for most of us to reach remission, by diet changes alone. A few of us are lucky, and they reach remission after only a week or so on the diet, but most of us take much longer, especially if we have been reacting for a long time, as Gabes pointed out.
If your symptoms are so severe that you need to stop them quickly, then a prescription for Entocort will allow you to live a relatively normal life while the diet changes are healing your intestines. Entocort will usually bring a significant amount of relief within a few days to a week or so after beginning to take it, but most physicians want to stop the treatment too soon to allow the gut to heal, and that triggers a relapse. Entocort works best with the diet, if it is used for 4 to 6 months or more, and then the dosage should be tapered very, very slowly (over many weeks) in order to prevent the mast cell rebound effect that occurs if it is discontinued too abruptly.
Most of the other medications that are prescribed to treat MC are hardly worth considering except in special cases. The corticosteroids do not speed up healing (in fact, they slow down healing slightly), but they can make life much easier while the diet changes are healing the gut.
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.
Intro and question
Tex,
In answer to your question, I did a lot of digging. First, I do not have the big two MTHFR mutations but I am Homozygous for MTHFS which is folate conversion; MTRR, MIR and several others. Then I am Heterozygous for MTHFD1L, MTR A, MTRR 11, etc. Actually my doctor had put me on the methylfolate before I even had the gene mutation testing done! She suspected that I had MTHFR.
Then I next looked up my records on Fairview MyChart and I found that on 1/23/12 I had a test for Vit D. My D3 was 33. That test was done by my doctor at the Univerity of Minnesota. On June 4, 2014 my B12 was 1558 (Range is 247-911) On 7/11/2014 the B12 came down to 931 but my B6 was 228.9 (range 20.0 to 125.0) Nearly double the highest number. That is the only time I recall having those vitamins tested. My doctor doubted that I was overdosed on B vitamins because of the Methylation problem and I do believe that she is right. They were dumping into the blood and not getting into the cells.
My Thyroid experience. On 9/6/2010 the biochemist started me on T100. I took it for nearly three months and on 11/30/2010, I went to see the Endocrinologist and immediately stopped the T100 and then started taking Methimazole. I was less than 0.03 on the TSH test. Two weeks later I was much improved and in early February I went off the thyroid pills entirely. I really do need to get checked again. My doctor was hesitant to check vitamin levels cause she didn't think insurance would pay for the tests. She also didn't figure I should test for Sjogrens and I doubt I have that anyway.
Jean
In answer to your question, I did a lot of digging. First, I do not have the big two MTHFR mutations but I am Homozygous for MTHFS which is folate conversion; MTRR, MIR and several others. Then I am Heterozygous for MTHFD1L, MTR A, MTRR 11, etc. Actually my doctor had put me on the methylfolate before I even had the gene mutation testing done! She suspected that I had MTHFR.
Then I next looked up my records on Fairview MyChart and I found that on 1/23/12 I had a test for Vit D. My D3 was 33. That test was done by my doctor at the Univerity of Minnesota. On June 4, 2014 my B12 was 1558 (Range is 247-911) On 7/11/2014 the B12 came down to 931 but my B6 was 228.9 (range 20.0 to 125.0) Nearly double the highest number. That is the only time I recall having those vitamins tested. My doctor doubted that I was overdosed on B vitamins because of the Methylation problem and I do believe that she is right. They were dumping into the blood and not getting into the cells.
My Thyroid experience. On 9/6/2010 the biochemist started me on T100. I took it for nearly three months and on 11/30/2010, I went to see the Endocrinologist and immediately stopped the T100 and then started taking Methimazole. I was less than 0.03 on the TSH test. Two weeks later I was much improved and in early February I went off the thyroid pills entirely. I really do need to get checked again. My doctor was hesitant to check vitamin levels cause she didn't think insurance would pay for the tests. She also didn't figure I should test for Sjogrens and I doubt I have that anyway.
Jean
You might think you understood what I said but what you don't realize is that what I said was not what I meant!
Jean,
Based on your test results, I don't see anything wrong with what you are doing. And my doctor agrees with your doctor. My results for B-12 and folate were both above range, but my doctor saw no problems with that since all the electrolytes, enzymes, etc., checked out OK.
And based on my own symptoms, I certainly agree that thyroid overtreatment can/will masquerade as Sjogrens.
Tex
Based on your test results, I don't see anything wrong with what you are doing. And my doctor agrees with your doctor. My results for B-12 and folate were both above range, but my doctor saw no problems with that since all the electrolytes, enzymes, etc., checked out OK.
And based on my own symptoms, I certainly agree that thyroid overtreatment can/will masquerade as Sjogrens.
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.