I think I finally figured out how to post an avatar picture. It was taken when I was still relatively healthy, about 5 years ago.
I think about this picture a lot, well daily, because I have lost a lot of my hair since I've been sick and I hardly ever wear my hair in two braids. So when I braid my hair behind my head and I feel how thin that braid has become- I think of this picture when my hair could produce two braids thicker than the one I have now. That makes me feel sad and feel that this happy healthy person is lost to me forever.
Of course I could have chosen a much older picture of me with a shaved head and a mohawk, and then we could all notice how much MORE hair I have today. And that's kind of how I bounce around in my head- going from sad to joking, hiding my hurt. Which is why I have named my journal Sisu.
It's a complicated concept apparently- a whole wiki entry just trying to define it- but
"Having guts" is a fairly literal translation
http://en.wikipedia.org/wiki/Sisu
Guts! We all have them, or at least most of them, don't we?
I don't know how much writing about food I'm going to do- I'm keeping a food diary in a notebook as well as recording any other issues weather, events, situations etc. One other thing I am keeping track of is my body temperature which has been consistently low ever since I began paying attention to it about 20 days ago (November 17 2014) Most days when I wake up it's about 97.6 but some days it's below 97. Some days I'll get cold inside the house and go check the thermostat we have programmable heat which will set itself at different times of day and I never know if it's me or if the house is just in a cooler phase and if the house temp is normal then I'll take my temp again. Today I was shivering inside the house (70 degrees) and my body temp was VERY low 95.6. In the past my temperature was never anything other than 98.6 except if I had a fever- (I also wasn't in the habit of taking my temperature unless I suspected I had a fever) Back on November 17 when I was having a bad reaction to Budesonide- I had a terrible, thankfully not very long lasting spell where I had both terrible D cramping and nausea, and then weakness, shakes, chills, confusion and extreme sweating. I collapsed on the livingroom floor and asked my daughter for the thermometer because I didn't know if I was hot or cold and my temp was 95.6 I've been monitoring my temperature since them but have not seen a Dr. about that particular question.
Oh yeah- my husband's work was bought out and they are going through a big change including a different (more expensive/less benefits) health insurance plan. The new insurance doesn't kick in till January 1... but the old insurance seems to have dropped the ball on all of us and we have had to work extra hard to get our outstanding claims handled. I am afraid of going to the Dr. during this transition time for fear that the dropped company will just flake out and make the whole thing a nightmare.
what is going on with my diet is that I have gone totally off gluten and am eating only "green" foods on the histamine intolerance food chart- I'm also avoiding everything yummy and everything crunchy (my 4 year old daughter is actually convinced that my diet restriction is "no crunchy" and she gets all food police on me if I eat dry rice chex as a snack) . I had butter on rice and in my sweet potato until last week when I switched for coconut oil. I still had milk in my coffee and on my rice chex- until today because I finally got my hands on some almond milk. Can't speak too highly about that stuff but maybe it will grow on me.
So here is my current food list:
Rice
Chicken (will be turkey)
Sweet Potato
Rice Chex
Coconut oil (was butter)
himalayan salt
water
coffee (was milk- will be almond milk) and a tsp of sugar
camomile tea
peppermint tea
almond milk
unsweetened store bought applesauce
I'm taking a 24 hour Allegra in the AM and a vitamin D capsule (which dangit is soy oil!!)
I am not taking Budesonide or Dicyclomine
I have very watery D anywhere from 3 - 7 times a day.
I am frequently dizzy or feel a brain fog, sometimes have trouble focusing my eyes, I sometimes get shakey and frequently need to take a nap in the middle of the day. I have a pain in my lower back that only happens when I'm sleeping- it seems more on my left side and inside my pelvis- sometimes it feels like the bones of my pelvis aren't knit together properly.
I don't fart. Well... sometimes there are blasts which accompany a trip to the toilet- but I never pass gas during the day since I've been sick. I'm curious what that signifies- I guess I can be glad that I don't have gas pains or bloating (which WILL happen if I take immodium)
I also used to have a lot of trouble with stress incontinence and urine- I thought it was because I have 4 kids. It also had it's own cycle that seemed linked to ovulation. That seems to be gone now since I have been doing the diet restrictions- but I haven't been through a whole monthly cycle yet.
My nose problems are pretty much gone. I had wanted to try no histamine diet a while longer before starting allegra so I could see how much of my allergic nose was connected to food- (and certainly I was seeing a change) but I got sick on some quinoa (thanks mom!) and was hoping to not revert into the frequent D cycle and started allegra. I am back into the frequent D cycle but my nose feels much better.
I think I have lost about 15 pounds since mid November. I had gained a lot before I was diagnosed. There is still plenty of me here that I won't melt away before spring at least.
This morning I was cooking some beautiful round slices of Italian bread, frying them actually in a pan with a lot of butter. I had just started to flip them over ... you know that moment when you are relieved you didn't burn it and it's just cooked to perfection? - golden caramel colored crispy edges with tiny butter bubbles all clinging to the crust... I had flipped over about three and there were about five to go- when I realised I was frying bread in butter and then I realised that I was dreaming. And I woke up crying. I wake up crying quite a bit, of course it always seems like I have a good reason for crying- but I'm pretty sure that this is actually a symptom and not a circumstance.
Sarah's Sisu
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Skyward,
I'm pretty new here, so I can't give you much advice, but you are in good hands here at the board, with caring and knowledgable people.
If you use Himalyan salt for health issues, in order to get magnesium, try Epsom-salt instead. Epsom-salt is more efficient.
I know too well the temperature problem, but it seems to have gone since I started my B-vitamin regimen. I don't know if there is a connection, but Tex and the others here might give you a hint.
Lilja
I'm pretty new here, so I can't give you much advice, but you are in good hands here at the board, with caring and knowledgable people.
If you use Himalyan salt for health issues, in order to get magnesium, try Epsom-salt instead. Epsom-salt is more efficient.
I know too well the temperature problem, but it seems to have gone since I started my B-vitamin regimen. I don't know if there is a connection, but Tex and the others here might give you a hint.
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Welcome to the board, sorry you are having such a rough time right now.
When I have WD I always get chilled and cannot get warm. I don't know the reason for the temperature drop.
I also had bone pain, joint pain & muscle pain for years and took several different pain meds. All that stopped as well with the restricted diet.
Sounds like you have made a great start on the diet, it is difficult sometimes. We are all here for your support. Others who don't have MC will not understand it.
I have wondered about that as well. I never pass gas unless I am already in the bathroom. Sometimes it is difficult for me to pass gas at all and I had to stop Imodium because it causes pain & bloating for me also.I don't fart. Well... sometimes there are blasts which accompany a trip to the toilet- but I never pass gas during the day since I've been sick. I'm curious what that signifies- I guess I can be glad that I don't have gas pains or bloating (which WILL happen if I take immodium)
I am 63, 2 kids and have had stress incontinence for years. Always thought it was from childbirth. I took prescription meds for it for years. Right before dx my pcp suggested surgery or botox injections (that made me hurt to even think about it). After I got on a restricted diet that problem stopped completely. I'm not sure why, maybe it was caused by inflammation?I also used to have a lot of trouble with stress incontinence and urine- I thought it was because I have 4 kids. It also had it's own cycle that seemed linked to ovulation. That seems to be gone now since I have been doing the diet restrictions- but I haven't been through a whole monthly cycle yet.
When I have WD I always get chilled and cannot get warm. I don't know the reason for the temperature drop.
I also had bone pain, joint pain & muscle pain for years and took several different pain meds. All that stopped as well with the restricted diet.
Sounds like you have made a great start on the diet, it is difficult sometimes. We are all here for your support. Others who don't have MC will not understand it.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
That's what I'm concerned about Joan.
My eyebrows are normal so far.
I want to get checked out ASAP, but I should wait till Jan 1 for the new insurance to kick in as the old insurance for the company has really lost interest in us as they have nothing to lose now that they have lost the gigantic account.
My eyebrows are normal so far.
I want to get checked out ASAP, but I should wait till Jan 1 for the new insurance to kick in as the old insurance for the company has really lost interest in us as they have nothing to lose now that they have lost the gigantic account.
Hi Sarah,
As Joan suggested, much of your description of your symptoms in your post point to hypothyroidism. We are approximately 7 times as likely as someone in the general population to have thyroid problems of one type or another. With your MC diagnosis, you also inherited that statistical probability. Low thyroid function is the most common cause of low body temperature, hair loss, etc. That said, all of the anti-inflammatory medications prescribed to treat IBDs, including Entocort, are notorious for causing hair loss. Typically though, the problem resolves after the medication is discontinued. The fact that your hair loss is still ongoing, suggests that hypothyroidism could be the cause of your symptoms.
However, I believe that Lilja has put her finger on the real problem, because she is quite correct in pointing out that the B vitamin deficiency that often occurs as a result of the malabsorption problem caused by MC can also cause problems with body temperature regulation. A slight deficiency of vitamin B-12 can lead to symptoms such as anemia, fatigue, indigestion, constipation, diarrhea, gas, nausea, and insomnia. A B-12 deficiency can even cause obsessive compulsive disorder, mania, depression, loss of appetite, PMS (premenstrual symptoms), impotence, and premature grey hair.
Eventually, a longer-term B-12 deficiency can lead to a weak immune system, reduced sense of feeling in the limbs, pins-and-needles sensations in fingers and toes, memory and balance disturbances, dizziness, disorientation, nervousness, trembling, eye problems, liver problems, menstruation cessation or reduced frequency, infertility, miscarriages, and an inability to regulate body temperature.
A long term deficiency can cause cancer, damage to the brain and central nervous system issues such as Alzheimer's, dementia, hallucinations, multiple sclerosis, and pernicious anemia.
I can tell you from personal experience that the B-12 deficiency risk with MC is real, because I have permanent neurological damage that causes many of those symptoms that I have to treat daily with a prescription vitamin combination known as Metanx, which consists of balanced large doses of the active forms of vitamins B-12, B-9, and B-6. Due to a GI doc who didn't know anything about MC (and I didn't know anything about it back then, either), my symptoms lasted for years before I figured out that my diet was the problem. And somewhere along the line, I apparently ran way too low on vitamin B-12, resulting in permanent neurological damage. If I don't take Metanx regularly, I lose my balance, my sense of feeling and reflexes in my lower legs and feet, and in my arms and hands, and my memory and cognizance decline. All this even though I have been in remission from my MC symptoms for over 10 years now.
The bottom line is, many of your symptoms (possibly including the diarrhea) might be due to, or at least exacerbated by, a vitamin B-12 deficiency. And since vitamin B-9 (folic acid) is essential for our body to be able to utilize B-12, the problem could also be due to a methylation problem. That is to say, the B-12 deficiency might possibly be due to an inability to convert folic acid to the active form (methyl folate) that the body can utilize. For those of us who have a methylation problem, folic acid not only does not help, but it actually causes problems (such as leading to a buildup of homocysteine).
Journaling definitely helps.
Tex
As Joan suggested, much of your description of your symptoms in your post point to hypothyroidism. We are approximately 7 times as likely as someone in the general population to have thyroid problems of one type or another. With your MC diagnosis, you also inherited that statistical probability. Low thyroid function is the most common cause of low body temperature, hair loss, etc. That said, all of the anti-inflammatory medications prescribed to treat IBDs, including Entocort, are notorious for causing hair loss. Typically though, the problem resolves after the medication is discontinued. The fact that your hair loss is still ongoing, suggests that hypothyroidism could be the cause of your symptoms.
However, I believe that Lilja has put her finger on the real problem, because she is quite correct in pointing out that the B vitamin deficiency that often occurs as a result of the malabsorption problem caused by MC can also cause problems with body temperature regulation. A slight deficiency of vitamin B-12 can lead to symptoms such as anemia, fatigue, indigestion, constipation, diarrhea, gas, nausea, and insomnia. A B-12 deficiency can even cause obsessive compulsive disorder, mania, depression, loss of appetite, PMS (premenstrual symptoms), impotence, and premature grey hair.
Eventually, a longer-term B-12 deficiency can lead to a weak immune system, reduced sense of feeling in the limbs, pins-and-needles sensations in fingers and toes, memory and balance disturbances, dizziness, disorientation, nervousness, trembling, eye problems, liver problems, menstruation cessation or reduced frequency, infertility, miscarriages, and an inability to regulate body temperature.
A long term deficiency can cause cancer, damage to the brain and central nervous system issues such as Alzheimer's, dementia, hallucinations, multiple sclerosis, and pernicious anemia.
Those symptoms are a very close fit for someone who has a vitamin B-12 deficiency. Please have your vitamin B-12 level checked, or better yet, start taking a supplement that contains the active form of vitamin B-12 (methyl cobalamin). There are sublingual lozenges available that are designed to dissolve under the tongue, where they go straight into the bloodstream (bypassing the malabsorption problems in the digestive system). They are even available with a combination of B-12 and folate, in the proper balanceSarah wrote:I am frequently dizzy or feel a brain fog, sometimes have trouble focusing my eyes, I sometimes get shakey and frequently need to take a nap in the middle of the day.
I can tell you from personal experience that the B-12 deficiency risk with MC is real, because I have permanent neurological damage that causes many of those symptoms that I have to treat daily with a prescription vitamin combination known as Metanx, which consists of balanced large doses of the active forms of vitamins B-12, B-9, and B-6. Due to a GI doc who didn't know anything about MC (and I didn't know anything about it back then, either), my symptoms lasted for years before I figured out that my diet was the problem. And somewhere along the line, I apparently ran way too low on vitamin B-12, resulting in permanent neurological damage. If I don't take Metanx regularly, I lose my balance, my sense of feeling and reflexes in my lower legs and feet, and in my arms and hands, and my memory and cognizance decline. All this even though I have been in remission from my MC symptoms for over 10 years now.
The bottom line is, many of your symptoms (possibly including the diarrhea) might be due to, or at least exacerbated by, a vitamin B-12 deficiency. And since vitamin B-9 (folic acid) is essential for our body to be able to utilize B-12, the problem could also be due to a methylation problem. That is to say, the B-12 deficiency might possibly be due to an inability to convert folic acid to the active form (methyl folate) that the body can utilize. For those of us who have a methylation problem, folic acid not only does not help, but it actually causes problems (such as leading to a buildup of homocysteine).
That's an advantage for someone who has MC, because when MC is active, the concept of a dry fart is only wishful thinking — most of them will be wet, if they occur. It's no coincidence that one of the founding members here (Polly, who is an MD) originated the phrase, "Happiness is a dry fart".Sarah wrote:I don't fart. Well... sometimes there are blasts which accompany a trip to the toilet- but I never pass gas during the day since I've been sick. I'm curious what that signifies- I guess I can be glad that I don't have gas pains or bloating (which WILL happen if I take immodium)
I have a hunch that this is related to a B-12 deficiency (but I have no proof of that), but in general, many of us who have MC find that we tend to cry much more spontaneously than we did prior to the onset of symptoms. Many of the things that we would have shrugged off or even laughed at previously, now bring tears to our eyes.Sarah wrote:I wake up crying quite a bit, of course it always seems like I have a good reason for crying- but I'm pretty sure that this is actually a symptom and not a circumstance.
Journaling definitely helps.
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.
Thank you for all the insights Tex. Can I ask for clarification on what you wrote here?
(and I'll give you that I don't know what methylation is yet)
So if I have a problem with B-9 and that is going to prevent me from being able to utilize B-12- but folic acid causes problems... that sounds like an unanswerable loop to me.
If I take B-12 without fixing or addressing the underlying problem- am I just bouncing them off the wall?
Is there a way to address a methylation problem?
Let's assume I need B12 and let's assume that's because of an inability to convert folic acid to methyl folateThe bottom line is, many of your symptoms (possibly including the diarrhea) might be due to, or at least exacerbated by, a vitamin B-12 deficiency. And since vitamin B-9 (folic acid) is essential for our body to be able to utilize B-12, the problem could also be due to a methylation problem. That is to say, the B-12 deficiency might possibly be due to an inability to convert folic acid to the active form (methyl folate) that the body can utilize. For those of us who have a methylation problem, folic acid not only does not help, but it actually causes problems (such as leading to a buildup of homocysteine).
(and I'll give you that I don't know what methylation is yet)
So if I have a problem with B-9 and that is going to prevent me from being able to utilize B-12- but folic acid causes problems... that sounds like an unanswerable loop to me.
If I take B-12 without fixing or addressing the underlying problem- am I just bouncing them off the wall?
Is there a way to address a methylation problem?
Sara, you have so much to deal with with your health plus family concerns! Please know that so many of us have felt miserable on so many levels and have found some relief. It would be great if "there was a pill for that" to bring back how good we used to feel, but the good news is that the dietary changes really do make a difference over time.
I am 3 months into the diet and supplements after living with CC for 3 years. I hear you about terminal chilliness/pain/brain fog. Last winter I really wanted to just stay in bed (with 3 down comforters). Of course, the doctors loaded me up with tests and drugs, but they only mitigated the problems a little bit. I have also lost a lot of my hair. I still take 3mg. Entocort but hope to stop soon.
Knock on wood, we are well into winter weather here and I'm only feeling badly when I screw up on my diet. I ate chicken 3 meals in a row last week and paid for it with all day cramps, pain, chills. I knew right away what my problem was because I'm usually really strict with my diet (and quite used to it). And, most importantly, I knew that I would feel better when I got my food back on track. My day to day pain level is much improved, I have much more energy and I "feel like myself" again.
After 3 months, I have figured out that too much chicken is a bad trigger but I can eat all I want of turkey, lamb, venison (my brother hunts). I cycle in beef and pork, too, but not more than 2 days in a row. I can eat rice and potatoes, but not every day. I can eat all I want of sweet potatoes and carrots and can cycle in green beans, turnips, and broccoli. I use quite a lot of olive oil and coconut oil and don't bother to trim fat from meats. I eat bone broth every day. Eggs still don't work for me, darn. But now I can eat almond butter with a little jam on rice cakes. Bananas once in a while. Applesauce doesn't work for me. I eat a tiny bit of 90% dark chocolate every day (smile).
If you have a blender, try whizzing your coffee or black tea with Goya canned coconut milk (no additives). It's creamy/frothy like a latte (your reward for being such a good girl). You can add a little honey or maple syrup and feel almost like a normal person! I carry some in a small thermos so I can drink coffee at Starbucks/Dunkin".
These are the rice cakes that I LOVE. Thin, not crumbly, just rice - available at Amazon: amazon.com/Suzies-Whole-Puffed-Crackers-4-9-Ounce/dp/B000FDKUSO/ref=sr_1_1?ie=UTF8&qid=1418069447&sr=8-1&keywords=suzi's+rice+thins
Good luck, my friend. Know that you have LOTS of cheerleaders here!
I am 3 months into the diet and supplements after living with CC for 3 years. I hear you about terminal chilliness/pain/brain fog. Last winter I really wanted to just stay in bed (with 3 down comforters). Of course, the doctors loaded me up with tests and drugs, but they only mitigated the problems a little bit. I have also lost a lot of my hair. I still take 3mg. Entocort but hope to stop soon.
Knock on wood, we are well into winter weather here and I'm only feeling badly when I screw up on my diet. I ate chicken 3 meals in a row last week and paid for it with all day cramps, pain, chills. I knew right away what my problem was because I'm usually really strict with my diet (and quite used to it). And, most importantly, I knew that I would feel better when I got my food back on track. My day to day pain level is much improved, I have much more energy and I "feel like myself" again.
After 3 months, I have figured out that too much chicken is a bad trigger but I can eat all I want of turkey, lamb, venison (my brother hunts). I cycle in beef and pork, too, but not more than 2 days in a row. I can eat rice and potatoes, but not every day. I can eat all I want of sweet potatoes and carrots and can cycle in green beans, turnips, and broccoli. I use quite a lot of olive oil and coconut oil and don't bother to trim fat from meats. I eat bone broth every day. Eggs still don't work for me, darn. But now I can eat almond butter with a little jam on rice cakes. Bananas once in a while. Applesauce doesn't work for me. I eat a tiny bit of 90% dark chocolate every day (smile).
If you have a blender, try whizzing your coffee or black tea with Goya canned coconut milk (no additives). It's creamy/frothy like a latte (your reward for being such a good girl). You can add a little honey or maple syrup and feel almost like a normal person! I carry some in a small thermos so I can drink coffee at Starbucks/Dunkin".
These are the rice cakes that I LOVE. Thin, not crumbly, just rice - available at Amazon: amazon.com/Suzies-Whole-Puffed-Crackers-4-9-Ounce/dp/B000FDKUSO/ref=sr_1_1?ie=UTF8&qid=1418069447&sr=8-1&keywords=suzi's+rice+thins
Good luck, my friend. Know that you have LOTS of cheerleaders here!
Yes. The combination of vitamins that Lilja is using will do that. You can review that discussion in the thread at the following link, beginning with post number 9 (by Lilja), and continuing to the second page:Sarah wrote:Is there a way to address a methylation problem?
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20661
And of course it's a good idea to minimize conventional folic acid intake by mostly avoiding vitamin supplements that contain folic acid, and foods that are enriched or "fortified" with folic acid. Believe it or not, with MC we have an advantage for avoiding folic acid, because the types of foods that are fortified with folic acid are to a large extent the foods that we find it necessary to avoid anyway, such as breakfast cereals, wheat bread and wheat flour. Unfortunately, cornmeal and white rice also often have added folic acid, and they also naturally contain a certain amount of folic acid. It may not be as easy to avoid those, but checking the label will always provide information on how much folic acid they contain. Most grains contain folic acid, but many of us follow a modified paleo diet, so we mostly avoid those grains, anyway. Many of the natural sources of folic acid are foods that we find necessary to avoid anyway, such as whole grains, leafy vegetables, citrus fruits, and beans (legumes).
Remember that similar to high histamine foods, it's not necessary to totally avoid foods that contain folic acid, just minimize them so that our diets don't contain large amounts of them.The main point is to avoid vitamin supplements that contain folic acid, and minimize foods fortified with folic acid, because for some reason or other, the body isn't particularly efficient at utilizing the folic acid that occurs naturally in foods, but it uses synthetic forms more readily. Therefore minimizing foods "fortified" with folic acid (the label will show how much they contain), and avoiding folic acid vitamin supplements should be sufficient for most of us.
As Gabes would say, "Perfection is not necessary, nor is it even desirable. Improvement that provides progress is the goal".
Even if you do not have methylation issues, taking the methyl form of B-12 is important, because it is much more readily absorbed, and the body can use it immediately to improve/correct neurological issues.
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.
Tex- Thanks for that explanation. I wrote down what you had said about the B-12 ... sublingual and methyl cobalamin so when I was in the CVS I could know exactly what I was looking for and not battle brain fog and sale stickers flapping off the shelves. I was so incredibly thankful for your attention to detail in giving me those specifics. I had to look hard- but was able to find the right B-12. Then at the checkout... purse, CVS extra care card, debit card, receipt, truck keys, bag of vitamins... I forgot my notebook there on the counter!!! Luckily I only got two steps away before the clerk noticed it and called me back. Oh my goodness... I left my CC diary on the store counter! Wow I sure dodged a bullet there- almost had a posting for the thread about things only a person with MC could understand!! I think I need to put a warning label on the cover- sheesh- an innocent could be scarred for life if that book got in the wrong hands.
When I got home I checked the mail (which from a big dually is no easy task) and way in the back of the mailbox there was a jammed cardboard box. the mailman must have used a 12 pound sledge to get it in there- and I almost ripped the mail box off the post trying to get it back out- but YOUR BOOK ARRIVED! I was beginning to wonder if it would ever come- sheesh I'm never going to opt for Amazon's free shipping again. Forget the drones- they must have a string of pack mules too. anyway- hopefully you won't have to do quite so much explaining to me now that I have the book.
When I got home I checked the mail (which from a big dually is no easy task) and way in the back of the mailbox there was a jammed cardboard box. the mailman must have used a 12 pound sledge to get it in there- and I almost ripped the mail box off the post trying to get it back out- but YOUR BOOK ARRIVED! I was beginning to wonder if it would ever come- sheesh I'm never going to opt for Amazon's free shipping again. Forget the drones- they must have a string of pack mules too. anyway- hopefully you won't have to do quite so much explaining to me now that I have the book.
Sarah wrote:an innocent could be scarred for life if that book got in the wrong hands.
That's for sure. Imagine what would go through their mind as they paged through it. 
I figured I was so forgetful that I would lose a notebook for sure, so I got around that problem by keeping my diary on a computer spreadsheet. That way the only thing I had to worry about was a hacker gaining access to it, and if that were to happen — well . . . that would just be their own hard luck.
I have a similar problem with my mailbox — it's much bigger than most, so the rural carrier feels obligated to stuff packages addressed to neighbors in there during bad weather, if the packages are too large to fit in their own boxes. And a high percentage of the packages seem to be slightly larger than one or more of the inside dimensions of the mailbox, but he manages to force them in there anyway.
That's good news that the book finally arrived, but please don't hesitate to ask questions anyway, anytime you aren't sure about something. With this disease it's much better to ask too many questions than to ask too few, and then regret it later. And it always seems that when we're searching for answers to specific questions, they're located in the final chapters of the book, or else hidden in a bunch of obfuscated syntax.
I always wondered why Amazon would go to the trouble of taking care of a stable full of pack mules, but I think you've just highlighted the reason — it's obviously worth it to them for the benefits those mules are bound to provide for promoting sales of Amazon's prime membership subscriptions.
Thanks for clarifying that.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.
I have been reading a lot of posts and a few mention dining out with a spouse or family get togethers at a holiday- but I haven't seen much mention of people who have families.
I am a mom of four children and we homeschool- so the kids are all here for every meal every day, my husband works a 12 hour shift with no lunch break or ability to eat out so has to carry a day's worth of food to work, and my mom recently moved in with us too. So including me- there are seven people in the household. It used to be when I cooked I would have to make a full large casserole pan of food to feed everyone dinner and have barely enough left over for my husband's lunch. Then when my mom came here to live- two different things happened- she was an extra mouth to feed which made all of baking dishes too small (or the easy leftover for Daddy's work was gone) and there was a double edged sword of kitchen help/powerplay.
Then came my diagnosis- so I am no longer "in that pot".
But nothing else has really changed in the house.
There was one day, a few days after I had the bad reaction to the Budesonide and was first looking at the diet changes when my husband said (having NO idea what he was even referring to), as he took a beer out of the fridge, "Maybe it wouldn't be so bad if the whole family went gluten free." I said, "You know beer is on that list." That was the last I've heard of that.
It's not like I can clean out all the things I don't eat and not have to look at them on my shelves and in my refrigerator and be tormented. For instance, this morning- an overview- there is a gigantic fruit bowl on my counter made of fruit that my mom purchased and arranged- it's lovely- and it's a great "grab a snack" station for the kids. I have a beautiful new kitchen and there is actually a spotlight shining on the fruitbowl. Grapes, bananas, pears, oranges... I'm pretending that they are plastic decorator fruit. Mom was thinking of making some French Toast- so there are two loaves of italian bread and a dozen eggs on the counter. The milk is in the fridge. (Right next to my husband's beer) She is also planning to do some christmas cookie baking, so the cookie cutters are out and... no lie- there are FOUR 5 lb. bags of King Arthur flour off to the side of the counter.
Now this is really hard on me- with Christmas approaching. I really HATE shopping. I can't express it enough- beyond my emotional feelings about consumerism and marketing and fashion and budgeting stress - as of late I have had a terrible PHYSICAL reaction to being inside stores- vertigo, weakness, blurry vision and confusion (and granted some or most of that reaction may be triggered by my emotional state in regards to shopping) So every year, Christmas is torture to me- my husband has dreams of the most amazing consumer event with presents stacked to the ceiling- while I would rather make paper chains for the tree and sing.... and bake christmas cookies.
So, on one hand I'm thankful my mom is here to pick up the slack while I'm hunkered down reeling in my own body situation- on the other hand I'd like to participate. Could, like the plastic fruit on the counter, I really work with the cookie dough as if it was just some playdoh fun? and not take a taste or break down crying once the smells start coming from the oven?
I'm a stay at home mom with a small business that does not take huge amounts of my time. Managing the family food- shopping for supplies just about daily it and preparing it and cleaning up- WAS MY JOB!!!
My disconnect from the food was not instant with the diagnosis- it started long before when my D problems caused me to lose my appetite or interest in food. Don't get me wrong- I was ravenous and I would snack quite a bit- but I had just lost all interest in putting effort into the flavor and beauty of food. Going in the grocery store (and it's a really awful little meat and potatoes small town Indiana grocery) was depressing enough in it's lack of inspirational food options (or lighting) but when I would look at food- instead of asking typical housewife questions like, "Oh this looks yummy" "What would go nice with this?" or "We haven't had this in a while" or "It's expensive- but let's splurge." In my terrible physical state I literally would look at a food and envision the pain when it would come out or what it would look like in the toilet a few hours after I ate it. So it was as if all the shelves were stocked with slight variations of canned diarrhea with a variety of labels on them. I wanted an IV drip... I wanted to be let off the hook of this relentless need to try to nourish myself with food and my food duty to my family.
Now that I have this diagnosis and am in the early stages of this elimination diet- I'm even more separated. Now I'm not only not digesting the family food, I'm not eating it either. I can't really bear to sit down at the table when they eat pasta with tomato sauce. The dishes stack up the same as they ever did.
My mom, I want to say she's trying- but on the other hand I almost feel like she's being willfully dense. I think I never should have shown her the histamine food chart- because she thinks that's it. She thinks if it's green on that list- I can have it. Never mind that it not only has to be green, but digestible by my damaged gut and gluten and lactose and soy free. So she bought a big expensive bag of macadamia nuts. Mind you- I have never bought shelled macadamia nuts in my whole life- and now I have a bag- because they are a low histamine nut. (I wonder how they could be worked into a christmas cookie?) And dried apricots, and organic raisins, and four giant beets with the greens on them...
(last time I ate beet I was trying juicing back in the summer - I drank beet juice and it felt like that juice dragged a chain harrow on the way through my guts and I pooped bright red for a week)
So it's a relationship dynamic of pretending to care and be helpful while simultaneously refusing to listen or do it on anyone else's terms.
I've considered clearing 1/2 of one shelf in the fridge for my food so I don't have to scan through all the off limits to me food to find something to eat. But right now the almond milk and applesauce are the only thing stored in the fridge for me anyway. And it's not like there is tons of spare room in there anyway for me to make such a sprawl for such meager pickin's.
I am a mom of four children and we homeschool- so the kids are all here for every meal every day, my husband works a 12 hour shift with no lunch break or ability to eat out so has to carry a day's worth of food to work, and my mom recently moved in with us too. So including me- there are seven people in the household. It used to be when I cooked I would have to make a full large casserole pan of food to feed everyone dinner and have barely enough left over for my husband's lunch. Then when my mom came here to live- two different things happened- she was an extra mouth to feed which made all of baking dishes too small (or the easy leftover for Daddy's work was gone) and there was a double edged sword of kitchen help/powerplay.
Then came my diagnosis- so I am no longer "in that pot".
But nothing else has really changed in the house.
There was one day, a few days after I had the bad reaction to the Budesonide and was first looking at the diet changes when my husband said (having NO idea what he was even referring to), as he took a beer out of the fridge, "Maybe it wouldn't be so bad if the whole family went gluten free." I said, "You know beer is on that list." That was the last I've heard of that.
It's not like I can clean out all the things I don't eat and not have to look at them on my shelves and in my refrigerator and be tormented. For instance, this morning- an overview- there is a gigantic fruit bowl on my counter made of fruit that my mom purchased and arranged- it's lovely- and it's a great "grab a snack" station for the kids. I have a beautiful new kitchen and there is actually a spotlight shining on the fruitbowl. Grapes, bananas, pears, oranges... I'm pretending that they are plastic decorator fruit. Mom was thinking of making some French Toast- so there are two loaves of italian bread and a dozen eggs on the counter. The milk is in the fridge. (Right next to my husband's beer) She is also planning to do some christmas cookie baking, so the cookie cutters are out and... no lie- there are FOUR 5 lb. bags of King Arthur flour off to the side of the counter.
Now this is really hard on me- with Christmas approaching. I really HATE shopping. I can't express it enough- beyond my emotional feelings about consumerism and marketing and fashion and budgeting stress - as of late I have had a terrible PHYSICAL reaction to being inside stores- vertigo, weakness, blurry vision and confusion (and granted some or most of that reaction may be triggered by my emotional state in regards to shopping) So every year, Christmas is torture to me- my husband has dreams of the most amazing consumer event with presents stacked to the ceiling- while I would rather make paper chains for the tree and sing.... and bake christmas cookies.
So, on one hand I'm thankful my mom is here to pick up the slack while I'm hunkered down reeling in my own body situation- on the other hand I'd like to participate. Could, like the plastic fruit on the counter, I really work with the cookie dough as if it was just some playdoh fun? and not take a taste or break down crying once the smells start coming from the oven?
I'm a stay at home mom with a small business that does not take huge amounts of my time. Managing the family food- shopping for supplies just about daily it and preparing it and cleaning up- WAS MY JOB!!!
My disconnect from the food was not instant with the diagnosis- it started long before when my D problems caused me to lose my appetite or interest in food. Don't get me wrong- I was ravenous and I would snack quite a bit- but I had just lost all interest in putting effort into the flavor and beauty of food. Going in the grocery store (and it's a really awful little meat and potatoes small town Indiana grocery) was depressing enough in it's lack of inspirational food options (or lighting) but when I would look at food- instead of asking typical housewife questions like, "Oh this looks yummy" "What would go nice with this?" or "We haven't had this in a while" or "It's expensive- but let's splurge." In my terrible physical state I literally would look at a food and envision the pain when it would come out or what it would look like in the toilet a few hours after I ate it. So it was as if all the shelves were stocked with slight variations of canned diarrhea with a variety of labels on them. I wanted an IV drip... I wanted to be let off the hook of this relentless need to try to nourish myself with food and my food duty to my family.
Now that I have this diagnosis and am in the early stages of this elimination diet- I'm even more separated. Now I'm not only not digesting the family food, I'm not eating it either. I can't really bear to sit down at the table when they eat pasta with tomato sauce. The dishes stack up the same as they ever did.
My mom, I want to say she's trying- but on the other hand I almost feel like she's being willfully dense. I think I never should have shown her the histamine food chart- because she thinks that's it. She thinks if it's green on that list- I can have it. Never mind that it not only has to be green, but digestible by my damaged gut and gluten and lactose and soy free. So she bought a big expensive bag of macadamia nuts. Mind you- I have never bought shelled macadamia nuts in my whole life- and now I have a bag- because they are a low histamine nut. (I wonder how they could be worked into a christmas cookie?) And dried apricots, and organic raisins, and four giant beets with the greens on them...
(last time I ate beet I was trying juicing back in the summer - I drank beet juice and it felt like that juice dragged a chain harrow on the way through my guts and I pooped bright red for a week)
So it's a relationship dynamic of pretending to care and be helpful while simultaneously refusing to listen or do it on anyone else's terms.
I've considered clearing 1/2 of one shelf in the fridge for my food so I don't have to scan through all the off limits to me food to find something to eat. But right now the almond milk and applesauce are the only thing stored in the fridge for me anyway. And it's not like there is tons of spare room in there anyway for me to make such a sprawl for such meager pickin's.
There are many decent gluten-free beers available these days. Anheuser-Busch even makes one, called Redbridge. To most beer-drinkers though, brand is paramount, so switching is not to be taken lightly. The more important consideration though is this:Sarah wrote:my husband said (having NO idea what he was even referring to), as he took a beer out of the fridge, "Maybe it wouldn't be so bad if the whole family went gluten free." I said, "You know beer is on that list." That was the last I've heard of that.
It appears that many/most people in the general population are actually sensitive to gluten, but they are presently tolerating it, and as long as they continue to eat it regularly, they will probably continue to remain tolerant. If they go on a GF diet for a couple of months or so though, and then reintroduce gluten into their diet, they will discover the surprising truth — they are actually sensitive to gluten. And once that sensitivity is fully triggered, they will never again be able to ingest gluten without an adverse reaction of some type. The reaction might be in the form of GI distress, or a headache, or muscle or joint pains, or even such seemingly-unrelated neurological issues such as problems with balance, memory, cognizance (brain fog), gait, etc. So adopting a GF diet is not to be taken lightly, unless the individual is serious about protecting her or his health in the long-term. IOW, if that happens, they will either consider you responsible for their gluten-sensitivity,
, or they will thank you for helping them to get their health back on track.Speaking from experience (based on EnteroLab test results following exposure) I can tell you that if there is any wheat flour in the house, your food will be contaminated with gluten, no matter how careful everyone may think they are when using it. Notice that I did not say may be contaminated. It will be contaminated. Whether or not your food will be contaminated sufficiently to cause you to react (or prevent you from achieving remission) will depend on your sensitivity level, and on how much flour dust escapes into the air, to settle out all over everything in the house (and especially in the kitchen). It is impossible to prevent flour dust from going everywhere once a bag is opened.Sarah wrote:She is also planning to do some christmas cookie baking, so the cookie cutters are out and... no lie- there are FOUR 5 lb. bags of King Arthur flour off to the side of the counter.
Incidentally, King Arthur also makes some of the best gluten-free flour on the market. Their pancake mix is also superb, and unlike Pamela's Pancake Mix, it's also dairy-free. King Arthur Pancake Mix arguably makes better-tasting pancakes than any of the brands that contain gluten (but since taste is a subjective consideration, I'm sure that you can find some people who will disagree, if you search far and wide).
Many members here have reported similar reactions. Apparently many of us are sensitive to some of the odors in certain stores (Wal-mart is frequently named, as an example), especially odors from floor cleaning chemicals, etc.Sarah wrote:as of late I have had a terrible PHYSICAL reaction to being inside stores- vertigo, weakness, blurry vision and confusion
I believe that's the best description of many modern processed foods that I've ever seen.Sarah wrote:In my terrible physical state I literally would look at a food and envision the pain when it would come out or what it would look like in the toilet a few hours after I ate it. So it was as if all the shelves were stocked with slight variations of canned diarrhea with a variety of labels on them.
"Diarrhea in a can" is an apt description for much of the stuff (not just processed foods in a can, but in any type of container). You do have a knack for stringing words together in a poetic manner. 
Better yet, a refrigerator of your own (even if it's just a small one), well away from the one that everyone else uses (and off limits to everyone else) would be a big step in the direction of preventing cross-contamination and problems caused by accidentally grabbing the wrong product.Sarah wrote:I've considered clearing 1/2 of one shelf in the fridge for my food so I don't have to scan through all the off limits to me food to find something to eat. But right now the almond milk and applesauce are the only thing stored in the fridge for me anyway. And it's not like there is tons of spare room in there anyway for me to make such a sprawl for such meager pickin's.
If you are going to be able to reliably control (and prevent) MC symptoms in the long run (in a kitchen that allows the use of gluten-containing flour), there will definitely need to be stringent rules about who does what, when, and where. Otherwise your health is going to suffer on a regular basis. Those members who are most successful at recovering faster, and leading symptom-free lives in general, typically do so in a kitchen that is free of their food sensitivities (at the very least, a kitchen that is free of wheat flour). Asking that many family members to adopt any or all of your own food sensitivities may be asking a lot (even though it is a much healthier lifestyle than what they are now following), so you might want to give some thought to the possibility of a second kitchen that is strictly and permanently free of your food sensitivities, if that's practical for you. Just converting from wheat flour to GF flour though, would eliminate about 90 % of the risk of cross-contamination, in most cases.
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 Sarah,
Consider buying the kids gifts on line this year. Target....Walmart.....Amazon and have them shipped to your house.
Your husband sounds more supportive than most that we get on here. Many folks like the taste of the GF Omission beer. That said, it is probably safer for him than us. Taking the whole family GF doesn't have to be pricey. Think protein....potatoes.....rice....sweet potatoes....veggies. Perhaps slowly ease into GF for the family. Does your Mom have aches and pains? Most find less aches and pains by going GF. Our very own Dees recipe link has a lot of good GF pies, cookies, entrees.
For future years.....a lot of holiday cookies are naturally GF. Think meringue cookies, buckeye cookies (peanut butter balls coated in chocolate etc.) For future years I'd get your Mom bags of the King Arthur GF flour mix and have her bake away from that. Life is about change.
You might like Elena Amsterdam's blog. She is cooking GF for a family.
I like Tex's idea of the $99.00 dorm fridge for your foods.
Brandy
Consider buying the kids gifts on line this year. Target....Walmart.....Amazon and have them shipped to your house.
Your husband sounds more supportive than most that we get on here. Many folks like the taste of the GF Omission beer. That said, it is probably safer for him than us. Taking the whole family GF doesn't have to be pricey. Think protein....potatoes.....rice....sweet potatoes....veggies. Perhaps slowly ease into GF for the family. Does your Mom have aches and pains? Most find less aches and pains by going GF. Our very own Dees recipe link has a lot of good GF pies, cookies, entrees.
For future years.....a lot of holiday cookies are naturally GF. Think meringue cookies, buckeye cookies (peanut butter balls coated in chocolate etc.) For future years I'd get your Mom bags of the King Arthur GF flour mix and have her bake away from that. Life is about change.
You might like Elena Amsterdam's blog. She is cooking GF for a family.
I like Tex's idea of the $99.00 dorm fridge for your foods.
Brandy
I was planning to get a refrigerator for myself in the future- but I was going to keep it in my tack room in the barn for horse medications, carrots and some cold drinks. 
Grrr. I LOVE buckeyes!
http://www.christmas-cookies.com/recipe ... candy.html
This potato candy is one of my husband's favorites- I've never made it before (his grandmother used to). It's more like fudge than a cookie if you've never had it- mashed potatoes, peanut butter, vanilla and powdered sugar.
Most of the ones we've mentioned so far I'm excluded from (at least at this point) because of working within the histamine restrictions (which has chocolate, peanut butter, and egg whites on the nope list...and in general I have cut waaaay back on my refined sugar too.
Thanks for the tip on the flour Tex! I have not tried any yet and I'm glad King Arthur had a note on the product page about xanthan gum so I know to pick some of that up too.
note to self- now must research xanthan gum...
http://chriskresser.com/harmful-or-harmless-xanthan-gum
I did the math on the King arthur GF flour- which seems to be packaged smaller to be able to not give sticker shock-
GF flour is $7.95 for 24 oz or $0.33 per oz. (about $2.00 a cup)
Regular all purpose flour is $4.95 for 5 lbs - or $0.06 per oz.
That would make a 5 lb bag of GF flour cost about $26.40 if there was no large size price reduction over packaging.
And now you know why I get vertigo when I am shopping.
I also REALLY appreciate the warning about dabbling in GF diets and the pandora's box it can open.
My husband is not a die hard fan of any one beer- he's more into sampling craft brews with a special bend toward small breweries from Cincinnati.
I saw in another thread mention of gluten withdrawal. I have to say that the first week on this diet I was feeling pretty awful with a lot of dizziness and shaky spells- those seem to have faded away for the most part- but I still am not seeing much difference in the digestion part of the story.
Grrr. I LOVE buckeyes!
http://www.christmas-cookies.com/recipe ... candy.html
This potato candy is one of my husband's favorites- I've never made it before (his grandmother used to). It's more like fudge than a cookie if you've never had it- mashed potatoes, peanut butter, vanilla and powdered sugar.
Most of the ones we've mentioned so far I'm excluded from (at least at this point) because of working within the histamine restrictions (which has chocolate, peanut butter, and egg whites on the nope list...and in general I have cut waaaay back on my refined sugar too.
Thanks for the tip on the flour Tex! I have not tried any yet and I'm glad King Arthur had a note on the product page about xanthan gum so I know to pick some of that up too.
note to self- now must research xanthan gum...
http://chriskresser.com/harmful-or-harmless-xanthan-gum
I did the math on the King arthur GF flour- which seems to be packaged smaller to be able to not give sticker shock-
GF flour is $7.95 for 24 oz or $0.33 per oz. (about $2.00 a cup)
Regular all purpose flour is $4.95 for 5 lbs - or $0.06 per oz.
That would make a 5 lb bag of GF flour cost about $26.40 if there was no large size price reduction over packaging.
And now you know why I get vertigo when I am shopping.
I also REALLY appreciate the warning about dabbling in GF diets and the pandora's box it can open.
My husband is not a die hard fan of any one beer- he's more into sampling craft brews with a special bend toward small breweries from Cincinnati.
I saw in another thread mention of gluten withdrawal. I have to say that the first week on this diet I was feeling pretty awful with a lot of dizziness and shaky spells- those seem to have faded away for the most part- but I still am not seeing much difference in the digestion part of the story.