Hello all. I am a 40 year old female. I was diagnosed with MLC one month ago. My doctor started me on GF/DF diet and gave me Uceris (budesonide) samples to take for three weeks to keep me from spending the $1200/month for Entocort. The Uceris gave me minimal improvement so we stopped it and now I am doing a three week treatment with pepto bismol.
My symptoms (mainly the big D) started in 2013 for over a year. Then I got pregnant and had absolutely no symptoms. Four months after my daughter was born the symptoms returned and I've had 15 months now with NO normal BM's.
My questions are:
1) how do you interpret the pregnancy related remission? Is there a treatment that would be better than others since I have had this experience?
2) I am considering the Enterolab testing. Since I was on the Uceris should I wait a while so that my results are not skewed? Again, I have been off the Uceris for only one week.
3) I am also considering the elimination diet. Is there a preference over the lab testing versus the diet? I am thinking the lab testing may have to be done because I also have hashimotos hypothyroidism and currently I am in a HYPER state with an almost undetectable tsh (off all levothyroxine since October). This is the second time my thyroid has done this and it usually takes a year to stabilize before I go back to a hypo state and back on meds. But my concern is that I'm having moderate bone/joint pain and I won't be able to tell if it's from food or continuing from the thyroid issues if I try the diet.
Any help or advice is greatly appreciated!
Newbie with lots of questions
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi D,
Welcome to our Internet family. You are fortunate to have found a doctor who actually recognizes the benefits of dietary treatment for MC — most still mistakenly insist that diet has nothing to do with the disease. Here are my thoughts on your questions:
But magnesium also plays an important role in this situation. Your pregnancy-induced remission should have lasted until lactation ceased, so if you breast fed your daughter for longer than 4 months, and your symptoms relapsed at 4 months postpartum, that suggests a magnesium deficiency. Here's my logic:
For one thing, most people in this country are magnesium deficient, and anyone who has an IBD is especially likely to have a magnesium deficiency because the malabsorption issues associated with IBDs tend to cause various mineral and vitamin deficiencies, including magnesium. And in addition, many medications (especially antibiotics and corticosteroids) deplete magnesium. Why does that matter? Because unused histamine in the body is normally purged by diamine oxidase (DAO) enzyme. If unused histamine is not removed from circulation, it can build up to levels that trigger adverse reactions. And as I mentioned above, DAO levels increase to roughly 500 times the normal level during pregnancy in order to protect the fetus from bioactive histamine.
But unknown to the medical community (at least this remains unrecognized by the mainstream medical community), many/most of us have mast cell/histamine issues when our MC is active. The basic problem is mast cell activation disorder (MCAD), but of course the association of reduced DAO levels compounds the problem for many of us. IBDs are known to case DAO deficiencies and our experience on this discussion board shows that this certainly applies to MC. My personal theory is that the DAO decline and MCAD issues associated with MC are virtually always due to undiagnosed magnesium deficiency (because virtually no mainstream clinicians understand how to test for magnesium deficiency, so they always mistakenly order the useless blood tests, which virtually always incorrectly rule out a magnesium deficiency). The point is that those blood tests will only detect a magnesium deficiency after all of the muscle cells of the body have been purged of their magnesium reserves as the body struggles to maintain a normal serum magnesium level. The test results will be normal even though the body may be starved for magnesium.
As further evidence that my theory is correct, I note that despite the fact that taking a DAO supplement should resolve a DAO enzyme deficiency, to date at least, no one here who has taken a DAO supplement has had any noticeable success. My guess is that the reason for this response failure is a magnesium deficiency in virtually every case. And here's the clincher:
Magnesium deficiency has been shown to cause elevated histamine levels (associated with a drastic decline in DAO levels). Here's a reference based on rat responses to magnesium deficiency:
Specific change of histamine metabolism in acute magnesium-deficient young rats.
Therefore my theory is that your DAO level collapsed prematurely due to increasing magnesium deficiency, resulting in a loss of pregnancy-induced remission from MC symptoms. IOW, I suspect that your symptoms are mast cell-induced, rather than T cell-induced (as defined for classic MC inflammation). I have a hunch that if you will boost your magnesium intake significantly (topically-applied magnesium works well, also), and minimize your intake of high histamine foods (and histamine-releasing foods), you will see significant improvement. You might find that a good daily H1 antihistamine for a week or so may also help to reduce your symptoms.
Of course such a premature relapse of symptoms could be caused by an abnormal (out of phase, or larger or smaller, or faster or slower than normal) hormonal change, also, but magnesium deficiency is extremely common, especially among IBD patients.
Your thyroid issues also suggest a magnesium deficiency. About a year ago when my magnesium deficiency became severe, my thyroid became hyper and caused all sorts of hyperthyroid issues. My doctor cut my dose of Armour in half and that helped to bring my TSH back into the normal range, but my clinical symptoms returned after a few weeks. I finally tracked the problem down to a magnesium deficiency, even though I was already taking a magnesium supplement — it wasn't nearly enough.
Magnesium deficiency can cause many symptoms, including muscle and joint pains. After you get your magnesium reserves somewhat restored, if you still have the joint pains, then they are probably due to additional food sensitivities (or possibly cross-contamination) that remain in your diet.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our Internet family. You are fortunate to have found a doctor who actually recognizes the benefits of dietary treatment for MC — most still mistakenly insist that diet has nothing to do with the disease. Here are my thoughts on your questions:
MC is strongly affected by hormonal changes. For example, most MC patients cannot reach remission if they are using HRT, and in many cases, that also applies to hormonal contraceptives. MC patients who become pregnant follow 1 of 2 possible courses — about half of them go into remission which typically lasts until lactation ceases, and the other half suffer a relapse or intensifying symptoms. Unfortunately there is no official (based on medical research) way to predict which is the most likely outcome. I have a theory that is related to mast cell issues that predicts that patients whose MC is mast cell-driven (rather than T cell-driven) tend to go into remission with pregnancy. And conversely, those whose MC is T cell-driven tend to have worsening symptoms. This theory is based on the fact that diamine oxidase enzyme concentrations in the placenta can reach approximately 500 times normal levels during pregnancy.1) how do you interpret the pregnancy related remission? Is there a treatment that would be better than others since I have had this experience?
Histamine and histamine intoleranceIn pregnancy, DAO is produced at very high concentrations by the placenta (119, 120), and its concentration may become 500 times that when the woman is not pregnant (120). This increased DAO production in pregnant women may be the reason why, in women with food intolerance, remissions frequently occur during pregnancy (14).
But magnesium also plays an important role in this situation. Your pregnancy-induced remission should have lasted until lactation ceased, so if you breast fed your daughter for longer than 4 months, and your symptoms relapsed at 4 months postpartum, that suggests a magnesium deficiency. Here's my logic:
For one thing, most people in this country are magnesium deficient, and anyone who has an IBD is especially likely to have a magnesium deficiency because the malabsorption issues associated with IBDs tend to cause various mineral and vitamin deficiencies, including magnesium. And in addition, many medications (especially antibiotics and corticosteroids) deplete magnesium. Why does that matter? Because unused histamine in the body is normally purged by diamine oxidase (DAO) enzyme. If unused histamine is not removed from circulation, it can build up to levels that trigger adverse reactions. And as I mentioned above, DAO levels increase to roughly 500 times the normal level during pregnancy in order to protect the fetus from bioactive histamine.
But unknown to the medical community (at least this remains unrecognized by the mainstream medical community), many/most of us have mast cell/histamine issues when our MC is active. The basic problem is mast cell activation disorder (MCAD), but of course the association of reduced DAO levels compounds the problem for many of us. IBDs are known to case DAO deficiencies and our experience on this discussion board shows that this certainly applies to MC. My personal theory is that the DAO decline and MCAD issues associated with MC are virtually always due to undiagnosed magnesium deficiency (because virtually no mainstream clinicians understand how to test for magnesium deficiency, so they always mistakenly order the useless blood tests, which virtually always incorrectly rule out a magnesium deficiency). The point is that those blood tests will only detect a magnesium deficiency after all of the muscle cells of the body have been purged of their magnesium reserves as the body struggles to maintain a normal serum magnesium level. The test results will be normal even though the body may be starved for magnesium.
As further evidence that my theory is correct, I note that despite the fact that taking a DAO supplement should resolve a DAO enzyme deficiency, to date at least, no one here who has taken a DAO supplement has had any noticeable success. My guess is that the reason for this response failure is a magnesium deficiency in virtually every case. And here's the clincher:
Magnesium deficiency has been shown to cause elevated histamine levels (associated with a drastic decline in DAO levels). Here's a reference based on rat responses to magnesium deficiency:
Specific change of histamine metabolism in acute magnesium-deficient young rats.
Therefore my theory is that your DAO level collapsed prematurely due to increasing magnesium deficiency, resulting in a loss of pregnancy-induced remission from MC symptoms. IOW, I suspect that your symptoms are mast cell-induced, rather than T cell-induced (as defined for classic MC inflammation). I have a hunch that if you will boost your magnesium intake significantly (topically-applied magnesium works well, also), and minimize your intake of high histamine foods (and histamine-releasing foods), you will see significant improvement. You might find that a good daily H1 antihistamine for a week or so may also help to reduce your symptoms.
Of course such a premature relapse of symptoms could be caused by an abnormal (out of phase, or larger or smaller, or faster or slower than normal) hormonal change, also, but magnesium deficiency is extremely common, especially among IBD patients.
If you only took Uceris for a few weeks, especially if it seemed to be ineffective, it probably won't affect your EnteroLab stool test results. If you had taken it for 6 months or more then it would definitely affect your results by possibly causing false negative results in some cases where antibody levels were marginally positive before taking Uceris.2) I am considering the Enterolab testing. Since I was on the Uceris should I wait a while so that my results are not skewed? Again, I have been off the Uceris for only one week.
The lab test results are much faster and require much less work and trial and error testing. The elimination diet works (if done properly), but it usually takes more self-discipline to go that route, compared with just following the lab test results.3) I am also considering the elimination diet. Is there a preference over the lab testing versus the diet? I am thinking the lab testing may have to be done because I also have hashimotos hypothyroidism and currently I am in a HYPER state with an almost undetectable tsh (off all levothyroxine since October). This is the second time my thyroid has done this and it usually takes a year to stabilize before I go back to a hypo state and back on meds. But my concern is that I'm having moderate bone/joint pain and I won't be able to tell if it's from food or continuing from the thyroid issues if I try the diet.
Your thyroid issues also suggest a magnesium deficiency. About a year ago when my magnesium deficiency became severe, my thyroid became hyper and caused all sorts of hyperthyroid issues. My doctor cut my dose of Armour in half and that helped to bring my TSH back into the normal range, but my clinical symptoms returned after a few weeks. I finally tracked the problem down to a magnesium deficiency, even though I was already taking a magnesium supplement — it wasn't nearly enough.
Magnesium deficiency can cause many symptoms, including muscle and joint pains. After you get your magnesium reserves somewhat restored, if you still have the joint pains, then they are probably due to additional food sensitivities (or possibly cross-contamination) that remain in your diet.
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.
Hi, D. I have LC as well and the only medication I took was Pepto Bismol tablets - 6/day for 8 weeks. After a few weeks I had to cut back to 4/day because I then had C. As I read Tex's book (upper right hand corner of this page) and posts on here I eliminated gluten and dairy. I did the EnteroLabs testing which was a great help in knowing what other foods to eliminate from my diet. The only time I had D after the Pepto was if I ate something that I react to. You are very fortunate that your doctor told you to eliminate gluten & dairy. My GI told me that gluten free is a fad. Good luck as you sort things out. You have found a terrific group of people who will be here to answer your questions. We've all been in your shoes and we are really the only people who truly understand what you are going through.
Marcia
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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Dhorne2275
- Posts: 10
- Joined: Thu Feb 11, 2016 1:38 pm
Thank you both so much for replying. Tex, I read your book and it has given me so much understanding!
It's interesting because you mentioned the lactation part. I breastfed my daughter for exactly 4 months and my symptoms returned within a few days of this! So from your reply I need to go with the histamine/mast cell treatment options. But it still sounds like my mag may be deficient due to the thyroid issues, right?
So now my confusion really starts - would I still need the Enterolab testing or the elimination diet if I control the histamine part?? I will go back to the book also and focus on rereading that part! Thanks so much!!
It's interesting because you mentioned the lactation part. I breastfed my daughter for exactly 4 months and my symptoms returned within a few days of this! So from your reply I need to go with the histamine/mast cell treatment options. But it still sounds like my mag may be deficient due to the thyroid issues, right?
So now my confusion really starts - would I still need the Enterolab testing or the elimination diet if I control the histamine part?? I will go back to the book also and focus on rereading that part! Thanks so much!!
Welcome, Dhorne!
I did the Enterolab testing, and really appreciated knowing what I needed to cut out for sure. Then after that, I was able to figure out other things that I needed to eliminate. (Back when I did the testing, they only offered testing for gluten, dairy, soy, eggs, and yeast.) For instance, I cut out all legumes, and when I tried adding some back in (green beans, peas), I had a definite reaction.
I personally would definitely do the testing.
I did the Enterolab testing, and really appreciated knowing what I needed to cut out for sure. Then after that, I was able to figure out other things that I needed to eliminate. (Back when I did the testing, they only offered testing for gluten, dairy, soy, eggs, and yeast.) For instance, I cut out all legumes, and when I tried adding some back in (green beans, peas), I had a definite reaction.
I personally would definitely do the testing.
Martha
Well, in view of that timing, I would have to say that your response was typical, so it was very likely due to normal hormonal changes, rather than primarily caused by a magnesium deficiency. Of course, they're sort of linked, to some extent.Dhorne2275 wrote:I breastfed my daughter for exactly 4 months and my symptoms returned within a few days of this!
But unless you have a nodule on your thyroid (nodules cause hyperthyroid activity), then it's very likely that your thyroid function deviations are due to the influence of a waxing and waning of a long-term magnesium deficiency. But remember that I'm not a doctor — I'm just someone who is sharing some of my research and some of my own personal experiences.
Precious few of us are only sensitive to gluten and casein. Most of us have additional food sensitivities, so the odds are relatively high that you may need to track down additional food sensitivities. Whether we prefer to do that by means of a lab test or by trial and error testing is something that each of us has to decide for ourselves.
Too much oral magnesium can cause D, so most of us who need a large dose (to correct a deficiency) divide it up between oral supplements and magnesium oil or lotion sprayed on our skin, or an Epsom salts foot soak, or adding Epsom salts to bath water, for example. Chelated magnesium (magnesium glycinate) is the form least likely to cause D. Magnesium citrate is usually OK in amounts up to roughly 300 mg, but larger doses may cause D, and of course individual tolerance can vary widely. Magnesium oxide is the form most likely to cause D, and it's the most poorly absorbed of all the types of magnesium supplements available.
And please be aware that virtually every bottle of magnesium supplements available in this country is misleadingly labeled. If the front label says 400 mg (or whatever), read the back label carefully and you will see that 400 mg is actually the amount per "serving", but a "serving" is 2 tablets, meaning that each tablet has only half as much magnesium as is listed on the front label. Because of that confusing and misleading labeling practice, virtually everyone makes the mistake of taking half as much magnesium as they actually need. That helps to perpetuate the magnesium deficiency problem by deceiving people into thinking that they are taking plenty, and they wonder why it isn't helping. As a result, some folks may decide that they didn't have a magnesium problem in the first place, so they stop taking it altogether. IMO this labeling practice should be illegal.
I have had the same experience as Martha — I've ordered EnteroLab tests several times over the years, and I've always found it to be money well spent, because it eliminates any doubts I might have.
You're most welcome,
Tex