Visit the Microscopic Colitis Foundation Website
Allow me to introduce myself.
I am the mother who conscientiously kept wheat out of her babies’ diets until one year of age, because a niece nearly died from celiac as an infant. Alas, I had no idea Cheerios had gluten in them.
I am the mother who conscientiously kept dairy out of her babies’ diets until one year of age because of a grandfather who couldn’t tolerate cow’s milk.
I am the mother who breastfed all of her babies until they were a year old.
I am the mother who dropped DS2 off with relatives and stood in the ER nursing DS3 while getting the diagnosis of Type 1 diabetes for DS1.
I am the mother who looked down at her nursing infant noting the swirl of hair on the nape of his neck, just like his older, sick brother, and knew with a heavy heart that they shared too many genes and the baby would some day also have diabetes.
I am the idiot who lovingly fed her children homemade bread every day and homemade pizza every Friday night for pizza and movie night.
I am the mother whose premonition came true when DS3 was diagnosed with Type 1 diabetes at the age of 9.
I am the mother turned zealot who learned all about gluten when DS1 was diagnosed with Celiac as his 3rd autoimmune disease and who climbed to the rooftops to shout that gluten is the root of all evil.
I am the mother who grieved a grief of biblical proportions when, despite the zealotry and the pursuit of a gluten free household, DS2 was also stricken down with Type 1 diabetes.
I am the mother who picked up DS1 from college to go to the doctor, knowing that anyone who had lost 30 lbs in 3 weeks would go straight across the street to the hospital. Both of us knew before the test results came back that he had his 4th autoimmune disease: Crohn’s.
I am the woman who tried the South Beach Diet and lost weight very rapidly due to the incessant diarrhea that it caused and ended up very ill.
I am the woman who needed an epipen in the allergist’s office after reacting to all of the items on the skin prick testing.
I am the woman who reclaimed her health and achieved freedom from environmental allergies after discovering Eat to Live.
I am the woman who was diagnosed with LC a couple of weeks ago.
I am already gluten free, dairy free and egg free and have been for years. Remarkably, the GI who was certain that I, like my son, would have both Celiac and Crohn’s ruled out both. I strongly suspect that I have mast cell issues. Although I asked for the tryptase stain on my biopsies, I don’t think that was done. I am stumbling forward, reeling from the paleo autoimmune protocol to Eat to Live and back again. I have learned much lurking here on the board for the past few weeks and look forward to participating more fully.
Fern
New member introduction
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Fern,
Welcome to our internet family.
Wow! The genetic lottery has really been unkind to you and your family. All of us can definitely empathize with you. If only we knew then, what we know now . . . But in hindsight, if someone had told me back then what gluten was going to do to me, I would have never believed them anyway. I probably would have laughed at such a preposterous forecast. But we live and learn.
One question — "Have all of you checked your vitamin D levels?" Vitamin D deficiency and autoimmune disease (especially IBDs) are strongly associated. Low vitamin D predisposes to autoimmune disease (and especially IBDs), and IBDs tend to deplete vitamin D levels. And as you are probably aware, celic disease is also an IBD, though most doctors don't seem to recognize that fact.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our internet family.
Wow! The genetic lottery has really been unkind to you and your family. All of us can definitely empathize with you. If only we knew then, what we know now . . . But in hindsight, if someone had told me back then what gluten was going to do to me, I would have never believed them anyway. I probably would have laughed at such a preposterous forecast. But we live and learn.
One question — "Have all of you checked your vitamin D levels?" Vitamin D deficiency and autoimmune disease (especially IBDs) are strongly associated. Low vitamin D predisposes to autoimmune disease (and especially IBDs), and IBDs tend to deplete vitamin D levels. And as you are probably aware, celic disease is also an IBD, though most doctors don't seem to recognize that fact.
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 for the welcome, Tex.
I have been reading your book with great interest. I have respect for your engineering background having been raised by an engineer, married an engineer, and raised my own engineer (a helluvan engineer!
).
Yes, my husband and I are the perfect genetic storm. We have a fourth, a DD, who shares the identical genetic markers for diabetes with her brothers. She is the subject of great interest to the researchers since she has developed neither diabetes nor antibodies yet.
And yes, we keep tabs on the Vitamin D levels and several of my sons have been on prescription Vitamin D. My DH doles out Vitamin D like candy at the end of family dinners. You are wise to point that out.
Fern
I have been reading your book with great interest. I have respect for your engineering background having been raised by an engineer, married an engineer, and raised my own engineer (a helluvan engineer!
).Yes, my husband and I are the perfect genetic storm. We have a fourth, a DD, who shares the identical genetic markers for diabetes with her brothers. She is the subject of great interest to the researchers since she has developed neither diabetes nor antibodies yet.
And yes, we keep tabs on the Vitamin D levels and several of my sons have been on prescription Vitamin D. My DH doles out Vitamin D like candy at the end of family dinners. You are wise to point that out.
Fern
Wow! You have your work cut out for you, putting up with that many engineers in the family. 
Is your daughter by any chance following a GF diet? For some time I've felt that a GF diet would delay the onset of diabetes, and a grain-free diet should prevent it from ever developing, but of course I have no idea how early in life those diet changes would need to be made.
Kudos on your vitamin D program.
Tex
Is your daughter by any chance following a GF diet? For some time I've felt that a GF diet would delay the onset of diabetes, and a grain-free diet should prevent it from ever developing, but of course I have no idea how early in life those diet changes would need to be made.
Kudos on your vitamin D program.
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.
Welcome!
This site has been really helpful to me....but it looks like you have a leg up on many of us in the knowledge dept. I know Tex stated this once, but I didn't write it down...perhaps it is in his book. I just ordered a hard copy because it is too hard to search for things on the kindle (the down side to tech). Anyway, how much Vit D do you take? My gummy multi vites say 800 IU or 200%. Is that enough? I am so not a pill taker...I resorted to gummy vites and I don't have that horrible "after burp" with these.
This site has been really helpful to me....but it looks like you have a leg up on many of us in the knowledge dept. I know Tex stated this once, but I didn't write it down...perhaps it is in his book. I just ordered a hard copy because it is too hard to search for things on the kindle (the down side to tech). Anyway, how much Vit D do you take? My gummy multi vites say 800 IU or 200%. Is that enough? I am so not a pill taker...I resorted to gummy vites and I don't have that horrible "after burp" with these.
Everything will be ok in the end, if it's not ok, it's not the end.
Jean,
I'm sure this is more information than you wanted, but maybe you will find some of this interesting, and/or beneficial:
The amount of vitamin D supplement needed can depend on a number of things, but primarily it depends on the amount sunlight absorbed, for most of us. We absorb less when the angle of the sun is low, so our skin produces less vitamin D in the cooler months, and less sunlight is available at more northern latitudes.
But there is another factor that I believe is very important for vitamin D production in our skin — our cholesterol level. I've never seen this mentioned in the literature, because as far as I am aware, it has never been researched. But IMO, our cholesterol level plays a very important role in the ability of our body to synthesize vitamin D.
Cholesterol is the feedstock from which vitamin D is made. By utilizing the energy in sunlight, the body is able to convert cholesterol into vitamin D, at the surface of the skin. Note that this process takes some time for the chemical conversion to complete — up to 48 hours. That means that if we wash off the oily intermediate film on our skin before the process is completed, we will lose the vitamin D that would have been formed if the conversion had been allowed to complete. Our grandparents and great-grandparents didn't bathe or take a shower every day, the way so many of us do these days. And they got much more sun exposure to boot. So that's why they didn't have a vitamin D problem, and it's why we have to take a vitamin D supplement these days, if we intend to keep our vitamin D level in an optimum range for good health.
But here's a wild card that no one seems to be aware of — our ability to synthesize vitamin D in our skin appears to depend on our blood cholesterol level. It's not difficult to understand how that could be the case, in view of the fact that vitamin D is made from cholesterol. And here are some data to support that claim:
As background information, consider that in early February of 2010, I had to have emergency surgery to remove my colon. I had a sudden massive bleeding episode, and the source of the bleed couldn't be located, so it was necessary to remove my colon in order to save my life. My cecum and about 7 inches of my terminal ileum were also removed, during the procedure. This was caused by an apparent genetic disorder that runs in my father's side of the family, and it had nothing to do with MC. Both my father and an uncle (his brother) bled to death in a hospital, apparently because of the same problem.
Prior to that surgery, my cholesterol was always in the 225–230 mg/dL range. I was taking about 4,500 IU of vitamin D in the winter, and 2,500 IU during the summer. When my vitamin D level was checked in July of 2009, it was 96.8.
The surgery was in February of 2010, and when my vitamin D level was checked again in July of 2010, it was 46 (less than half the level of a year earlier). Obviously, something had happened to severely disrupt either my ability to synthesize vitamin D, or my ability to absorb vitamin D supplements. Since I had been in remission for almost 6 years at that point, I doubt that I still had a malabsorption problem. So apparently my ability to produce vitamin D from cholesterol had been severely compromised. Interestingly, a blood test in June, 2010 showed that my total cholesterol had plunged to 145 mg/dL, from 211 mg/dL in April (a 66 point drop in only 2 months).
Why? For one thing, as a result of a suspected TIA (suspected because it couldn't be ruled out), the ER doctor talked me into taking a statin, beginning in early May, 2010 (which I took for about 9 months before coming to my senses). I'm pretty sure that the cholesterol level plunge was due to the combined effect of the statin and the removal of a vital part of my terminal ileum. The terminal ileum is where unused bile salts are reabsorbed and recycled. As much as 90 % of the total amount of bile that is released into the small intestine during the digestive process is recovered in the terminal ileum, converted into cholesterol, and stored for future use. If that abundant supply of "cheap" cholesterol is cut off, then in order to maintain the status quo, the body is required to either produce roughly10 times more cholesterol than it previously did, or build up a deficit. Typically, the result is a combination of those 2 options, and in my case, my cholesterol level dropped dramatically.
The gut learns how to adapt however, and by July my cholesterol level was back up to 169, and these days it is usually in the 180–190 range.
To get back to the topic at hand though, despite increasing my vitamin D supplementation rate, my vitamin D level remained at (or very near) 46 ng/ml for 2 more years. This past year, after boosting my dosage to approximately 6,500 IU during the winter and 4,500 IU during the summer, I was finally able to boost my 25(OH)D test level to 55 ng/ml. I'd like to see it higher, so I'll be taking a higher dose this year. Age could certainly have a bearing on one's ability to synthesize vitamin D, also, and I'm not getting any younger.
But the bottom line is that it's pretty clear that when my cholesterol level plummeted, so did my vitamin D level, so obviously, cholesterol level plays a very important role in how much vitamin D our body is likely to produce.
Incidentally, I should point out that if doctors really think that elevated cholesterol levels are as hazardous to our health as they claim they are, in cases where they consider a patient's cholesterol level to be literally life-threatening, why don't they just surgically remove a section of the patients terminal ileum? I'll guarantee that would drastically reduce the patients cholesterol level in a matter of a few months, and much of the reduction would be permanent. While major abdominal surgery is never risk free, neither is taking a statin and/or various other drugs for the rest of one's life.
Tex
I'm sure this is more information than you wanted, but maybe you will find some of this interesting, and/or beneficial:
The amount of vitamin D supplement needed can depend on a number of things, but primarily it depends on the amount sunlight absorbed, for most of us. We absorb less when the angle of the sun is low, so our skin produces less vitamin D in the cooler months, and less sunlight is available at more northern latitudes.
But there is another factor that I believe is very important for vitamin D production in our skin — our cholesterol level. I've never seen this mentioned in the literature, because as far as I am aware, it has never been researched. But IMO, our cholesterol level plays a very important role in the ability of our body to synthesize vitamin D.
Cholesterol is the feedstock from which vitamin D is made. By utilizing the energy in sunlight, the body is able to convert cholesterol into vitamin D, at the surface of the skin. Note that this process takes some time for the chemical conversion to complete — up to 48 hours. That means that if we wash off the oily intermediate film on our skin before the process is completed, we will lose the vitamin D that would have been formed if the conversion had been allowed to complete. Our grandparents and great-grandparents didn't bathe or take a shower every day, the way so many of us do these days. And they got much more sun exposure to boot. So that's why they didn't have a vitamin D problem, and it's why we have to take a vitamin D supplement these days, if we intend to keep our vitamin D level in an optimum range for good health.
But here's a wild card that no one seems to be aware of — our ability to synthesize vitamin D in our skin appears to depend on our blood cholesterol level. It's not difficult to understand how that could be the case, in view of the fact that vitamin D is made from cholesterol. And here are some data to support that claim:
As background information, consider that in early February of 2010, I had to have emergency surgery to remove my colon. I had a sudden massive bleeding episode, and the source of the bleed couldn't be located, so it was necessary to remove my colon in order to save my life. My cecum and about 7 inches of my terminal ileum were also removed, during the procedure. This was caused by an apparent genetic disorder that runs in my father's side of the family, and it had nothing to do with MC. Both my father and an uncle (his brother) bled to death in a hospital, apparently because of the same problem.
Prior to that surgery, my cholesterol was always in the 225–230 mg/dL range. I was taking about 4,500 IU of vitamin D in the winter, and 2,500 IU during the summer. When my vitamin D level was checked in July of 2009, it was 96.8.
The surgery was in February of 2010, and when my vitamin D level was checked again in July of 2010, it was 46 (less than half the level of a year earlier). Obviously, something had happened to severely disrupt either my ability to synthesize vitamin D, or my ability to absorb vitamin D supplements. Since I had been in remission for almost 6 years at that point, I doubt that I still had a malabsorption problem. So apparently my ability to produce vitamin D from cholesterol had been severely compromised. Interestingly, a blood test in June, 2010 showed that my total cholesterol had plunged to 145 mg/dL, from 211 mg/dL in April (a 66 point drop in only 2 months).
Why? For one thing, as a result of a suspected TIA (suspected because it couldn't be ruled out), the ER doctor talked me into taking a statin, beginning in early May, 2010 (which I took for about 9 months before coming to my senses
). I'm pretty sure that the cholesterol level plunge was due to the combined effect of the statin and the removal of a vital part of my terminal ileum. The terminal ileum is where unused bile salts are reabsorbed and recycled. As much as 90 % of the total amount of bile that is released into the small intestine during the digestive process is recovered in the terminal ileum, converted into cholesterol, and stored for future use. If that abundant supply of "cheap" cholesterol is cut off, then in order to maintain the status quo, the body is required to either produce roughly10 times more cholesterol than it previously did, or build up a deficit. Typically, the result is a combination of those 2 options, and in my case, my cholesterol level dropped dramatically.The gut learns how to adapt however, and by July my cholesterol level was back up to 169, and these days it is usually in the 180–190 range.
To get back to the topic at hand though, despite increasing my vitamin D supplementation rate, my vitamin D level remained at (or very near) 46 ng/ml for 2 more years. This past year, after boosting my dosage to approximately 6,500 IU during the winter and 4,500 IU during the summer, I was finally able to boost my 25(OH)D test level to 55 ng/ml. I'd like to see it higher, so I'll be taking a higher dose this year. Age could certainly have a bearing on one's ability to synthesize vitamin D, also, and I'm not getting any younger.
But the bottom line is that it's pretty clear that when my cholesterol level plummeted, so did my vitamin D level, so obviously, cholesterol level plays a very important role in how much vitamin D our body is likely to produce.
Incidentally, I should point out that if doctors really think that elevated cholesterol levels are as hazardous to our health as they claim they are, in cases where they consider a patient's cholesterol level to be literally life-threatening, why don't they just surgically remove a section of the patients terminal ileum? I'll guarantee that would drastically reduce the patients cholesterol level in a matter of a few months, and much of the reduction would be permanent. While major abdominal surgery is never risk free, neither is taking a statin and/or various other drugs for the rest of one's life.
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.
Yes, Tex, my daughter is on a GF diet. We haven't had gluten in our house for 5 years or more. I'm trying to encourage everyone to be completely grain free. DS1 who has turned his engineering mind and degree to autoimmune research was the first to alert me to the dangers of cross reactivity and is almost completely grain free. Danielle Walker, author of the blog and the cookbook Against All Grains makes a compelling case for that in her personal health transformation story. She did what many here are doing and sought relief from Ulcerative Colitis through diet http://www.againstallgrain.com/2013/07/ ... formation/.
Leah, I understand the big salad twice a day with lots of fruits is not going to work for me. I really like eating that way and don't feel that I digest more than small amounts of meat very well. And I do love my black beans! I will use the cold weather season to rely more on soups and cooked veggies and maybe be a bit more "pot likker" than collards. I realize that nuts and seeds are not my friends. I have been getting weird reactions to them and am leaving them completely alone.
Jeanemcl, thanks you for your kind welcome. I am also not a pill taker. My GI insisted I take a prescription for Entocort home with me, even though he understood that I would not fill it. It makes a nice bookmark for Tex's book...
Fern
Leah, I understand the big salad twice a day with lots of fruits is not going to work for me. I really like eating that way and don't feel that I digest more than small amounts of meat very well. And I do love my black beans! I will use the cold weather season to rely more on soups and cooked veggies and maybe be a bit more "pot likker" than collards. I realize that nuts and seeds are not my friends. I have been getting weird reactions to them and am leaving them completely alone.
Jeanemcl, thanks you for your kind welcome. I am also not a pill taker. My GI insisted I take a prescription for Entocort home with me, even though he understood that I would not fill it. It makes a nice bookmark for Tex's book...
Fern
-
Gabes-Apg
- Emperor Penguin
- Posts: 8367
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Tex
I have managed to get my Vit D up to 116! (290 in Aus blood test measurements)
considering we are coming out of winter into spring I am very happy with that level.
I have been taking sub lingual Vit D 4000-8000iu per day..
based on that test result i am dropping back to the 2000-4000iu dosage
I have managed to get my Vit D up to 116! (290 in Aus blood test measurements)
considering we are coming out of winter into spring I am very happy with that level.
I have been taking sub lingual Vit D 4000-8000iu per day..
based on that test result i am dropping back to the 2000-4000iu dosage
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Leah,
I believe I read somewhere that the average daily consumption of vitamin D is something like 5,000 IU, so your test level should be pretty decent at that dosage rate, especially if you get a reasonable amount of sunlight exposure.
Gabes,
You've really got your vitamin D level going your way.
I would hope that at that level your GERD is well controlled, and you should be able to escape most flu and cold viruses.
I wish we were heading into spring. Winter is not my favorite time of year.
Tex
I believe I read somewhere that the average daily consumption of vitamin D is something like 5,000 IU, so your test level should be pretty decent at that dosage rate, especially if you get a reasonable amount of sunlight exposure.
Gabes,
You've really got your vitamin D level going your way.
I would hope that at that level your GERD is well controlled, and you should be able to escape most flu and cold viruses.
I wish we were heading into spring. Winter is not my favorite time of year.
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.
Welcome Fern!
I'm so sorry about your children's diagnoses, and now yours. I carry the HLADQ2 celiac/autoimmunity gene and so does my son. So far it has meant he has a very robust immune system and rarely gets sick (like mom). He's somewhat lactose intolerant, so I keep waiting for something worse to develop, but my husband won't allow me to put him on a GF diet without more reason, even though we are largely GF at home (hubby and his mom are also gluten sensitive). My daughter is allergic to legumes, which makes avoiding beans, peanuts and soy much easier for me.
Are you soy-free? Soy is a big trigger for most of us, usually worse than eggs.
I started the Autoimmune Paleo Protocol 2 weeks ago and it has made a big difference in my autoimmune skin rash. I thought cutting grains would be so hard, but now I barely miss them, and I'm never hungry! I'm hoping I can add some nuts, potatoes, cooked tomatoes and eggs back in eventually... How long have you been at it? And how it is different than Eat to Live?
I'm so sorry about your children's diagnoses, and now yours. I carry the HLADQ2 celiac/autoimmunity gene and so does my son. So far it has meant he has a very robust immune system and rarely gets sick (like mom). He's somewhat lactose intolerant, so I keep waiting for something worse to develop, but my husband won't allow me to put him on a GF diet without more reason, even though we are largely GF at home (hubby and his mom are also gluten sensitive). My daughter is allergic to legumes, which makes avoiding beans, peanuts and soy much easier for me.
Are you soy-free? Soy is a big trigger for most of us, usually worse than eggs.
I started the Autoimmune Paleo Protocol 2 weeks ago and it has made a big difference in my autoimmune skin rash. I thought cutting grains would be so hard, but now I barely miss them, and I'm never hungry! I'm hoping I can add some nuts, potatoes, cooked tomatoes and eggs back in eventually... How long have you been at it? And how it is different than Eat to Live?
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone