Laura,
Corn is arguably the most difficult ingredient to avoid, IMO. Hopefully, you are not intolerant to it. For many years, I was one of cokes biggest fans. I drank from 2 to 6 or more cokes virtually every day. When I went on trips, the only beverage I drank was cokes, (no water). When I discovered that I was corn intolerant, I stopped drinking it, cold turkey.
After my gut healed, I discovered that I could tolerate moderate amounts of corn again, so after avoiding them for roughly two years, I once again tried drinking cokes. Lo and behold, I found that I could drink them, but they didn't do anything for me. IOW, I didn't particularly like their taste. I had completely lost my craving. These days, if I'm traveling, and get thirsty, I might occasionally drink a coke, but they just don't hit the spot for me anymore, so evidently, they are an acquired taste.
What you said is true--at 25, you shouldn't have to be worrying about any of this stuff. At one time, MC was considered to be a disease of middle-aged and older people. Now, though, there are teens, and even pre-teens, who have been diagnosed with MC, as more and more GI's become aware of it.
As Celia noted, the prevelance of MC is considered to be in the range of about 4 to 7 or 8 cases per 100,000 in the general population, for developed countries, depending on which authorities are referenced. These statistics, however, are based on actual diagnosed cases of MC. Compared with celiac disease, MC is relatively rare. When you consider that in America, for example, approximately 97% of celiacs are currently undiagnosed, it is difficult to argue that MC would have any better diagnosis rate, since it is much more difficult to diagnose than CD. Clearly, the statistics that are commonly quoted in such studies are only the tip of the iceberg.
If, for example, you were to take the rate of 4.2 per 100,000, as quoted in the article that Celia cited, and apply the 3% diagnosis rate that has been claimed for CD, the resulting figure would imply that approximately 1 in 714 in the general population may have MC. (Still rare, by medical standards, but nevertheless much more significant than current statistics would indicate). IOW, at this rate, there would be one MCer for approximately every 5.4 celiacs, (in America).
Many of us here have at least one copy of one of the two most common celiac genes, but we don't qualify for a diagnosis of CD, based on the rigid, classic definition of CD that arbitrarily dictates the standards for diagnosis. http://www.perskyfarms.com/phpBB2/viewtopic.php?t=2645
Reaction times vary, depending on individual cases, and depending on the food trigger in question. They can be anywhere from a few minutes, to a couple of days or more. For most of us, symptoms usually start appearing between a few hours, and maybe half a day, after ingesting the trigger food. How long does it usually take you for symptoms to begin appearing, if you ingest gluten?
Tex
new to site --- possible MC
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Laura,
Just a note on the elimination diet. You eat a very basic diet until you feel better. You're not supposed to reintroduce foods until your symptoms have subsided. The idea is that if you do have multiple intolerances, you will feel better rather quickly. If you don't feel better after about two weeks, you probably don't have other intolerances.
I react to my intolerances in one to six hours. I can pretty much tell which food I accidentally ingested by my reaction and the timing of it. I have found that after a few years avoiding foods, my reactions are less severe.
Love, Jean
Just a note on the elimination diet. You eat a very basic diet until you feel better. You're not supposed to reintroduce foods until your symptoms have subsided. The idea is that if you do have multiple intolerances, you will feel better rather quickly. If you don't feel better after about two weeks, you probably don't have other intolerances.
I react to my intolerances in one to six hours. I can pretty much tell which food I accidentally ingested by my reaction and the timing of it. I have found that after a few years avoiding foods, my reactions are less severe.
Love, Jean
Be kind to everyone, because you never know what battles they are fighting.
Laura,
My story is a little different than many people on the board because it seems I caught the LC early when it was mild (patchy) and before it was throughout the colon. I already had many food intolerances by that time, and I had stopped eating gluten at least six months before I was diagnosed in Jan. 2006. Because my version is mild, I've never had explosive diarrhea; at its worse, it was just loose stools and urgency to poop. However, I have a whole range of other symptoms resulting from the ingestion of certain foods like very painful peripheral neuropathy, excrutiating morning stiffness, and so on (it's a long list). I also recently found out that I have a h. pylori infection and possibly a parasite.
My nutrionist (who is cutting-edge, gluten intolerance expert) recommends that people with an auto-immune condition cut out all the highly immunogenic foods from one's diet, if you can manage it, for a period of time. That would be the gluten, dairy, soy, yeast, egg, grains, and legumes. She told me that diary is the number 1 allergy, above glutten.
This would mean eating a very simple Paleo type diet (meat, poultry, fish, vegetables, fruit, nuts). Once your symptoms subside, you can try adding foods back in and see how you do. This would be a little less challenging than an elimination diet. Of course, the elimination diet is also a good way to go, depending upon how much you think you can manage. At the very least though, I would try eliminating dairy and soy - two real biggies.
Some people on the forum only have problems with one or two foods. A few of us have problems with a wide spectrum of foods. I was shocked when I finally realized the huge number of foods I could not eat. However, over time (and treating a h. pylori and parasite infection), like Jean, my level of sensitivity is decreasing. My reactions are quite mild now. So I imagine that I will be able to eat most foods again in six months or a year. But not dairy or gluten, for me, as indicated by Dr. Fine's tests.
Dr. Fine's test are another way to get a much quicker answer. You may react to addtional foods (than those he tests for), but at least you will know about the biggies.
You have a great spirit! I've enjoyed your posts so much. I know it must be daunting to be thinking about eliminating more food from your diet. I was totally addicted to black tea with milk and sugar (or stevia), and couldn't imagine ever giving it up. And I put butter on almost everything I ate. But in the end, feeling good again is just so much more appealing than my desire for any particular food.
Wishing you the best and speedy resolution of your symptoms.
Hugs, Celia
My story is a little different than many people on the board because it seems I caught the LC early when it was mild (patchy) and before it was throughout the colon. I already had many food intolerances by that time, and I had stopped eating gluten at least six months before I was diagnosed in Jan. 2006. Because my version is mild, I've never had explosive diarrhea; at its worse, it was just loose stools and urgency to poop. However, I have a whole range of other symptoms resulting from the ingestion of certain foods like very painful peripheral neuropathy, excrutiating morning stiffness, and so on (it's a long list). I also recently found out that I have a h. pylori infection and possibly a parasite.
My nutrionist (who is cutting-edge, gluten intolerance expert) recommends that people with an auto-immune condition cut out all the highly immunogenic foods from one's diet, if you can manage it, for a period of time. That would be the gluten, dairy, soy, yeast, egg, grains, and legumes. She told me that diary is the number 1 allergy, above glutten.
This would mean eating a very simple Paleo type diet (meat, poultry, fish, vegetables, fruit, nuts). Once your symptoms subside, you can try adding foods back in and see how you do. This would be a little less challenging than an elimination diet. Of course, the elimination diet is also a good way to go, depending upon how much you think you can manage. At the very least though, I would try eliminating dairy and soy - two real biggies.
Some people on the forum only have problems with one or two foods. A few of us have problems with a wide spectrum of foods. I was shocked when I finally realized the huge number of foods I could not eat. However, over time (and treating a h. pylori and parasite infection), like Jean, my level of sensitivity is decreasing. My reactions are quite mild now. So I imagine that I will be able to eat most foods again in six months or a year. But not dairy or gluten, for me, as indicated by Dr. Fine's tests.
Dr. Fine's test are another way to get a much quicker answer. You may react to addtional foods (than those he tests for), but at least you will know about the biggies.
You have a great spirit! I've enjoyed your posts so much. I know it must be daunting to be thinking about eliminating more food from your diet. I was totally addicted to black tea with milk and sugar (or stevia), and couldn't imagine ever giving it up. And I put butter on almost everything I ate. But in the end, feeling good again is just so much more appealing than my desire for any particular food.
Wishing you the best and speedy resolution of your symptoms.
Hugs, Celia
I beleive in magic!
So, this should come as no surprise to any of you who have been to h$ll and back with the medical community....
I had my colonoscopy on Friday. Came out of it, Dr. was talking to husband. Said that if tests come back negative, they will need to re-evaluate whether I "really" have Celiac or not (I have positive blood work, negative biopsy bc I was gf at the time of biopsy....but have SEVERE reactions to gluten). I was drug induced and started crying---although I will never eat gluten again, no matter what, it was so frustrating to hear him "think" and say this. He then said "It would be rare for someone to have more than one thing that is causing the diarrhea."
What planet did he come from!!!!
I got home and really tried to think, maybe there was some benefit to what he said. But, I found none. The only thing I could come up with is if I had been diagnosed originally with MC and went off gluten, (and actually had CD instead)---there could be some confusion with my actual dx. However, that is not the case! I am confused as to what the point would be to even attempt a gluten challenge. (It is not an option---I would be so terribly sick for so long---not worth it. Although, if I was crazy and decided to do it, I would do it in his office so he could personally see the pain and agony I go through----and, be sure to use his own personal bathroom, haha).
There is no point to this other than sharing my frustration. Apparently, it is time to find a new dr. Imagine that.
I had my colonoscopy on Friday. Came out of it, Dr. was talking to husband. Said that if tests come back negative, they will need to re-evaluate whether I "really" have Celiac or not (I have positive blood work, negative biopsy bc I was gf at the time of biopsy....but have SEVERE reactions to gluten). I was drug induced and started crying---although I will never eat gluten again, no matter what, it was so frustrating to hear him "think" and say this. He then said "It would be rare for someone to have more than one thing that is causing the diarrhea."
What planet did he come from!!!!
I got home and really tried to think, maybe there was some benefit to what he said. But, I found none. The only thing I could come up with is if I had been diagnosed originally with MC and went off gluten, (and actually had CD instead)---there could be some confusion with my actual dx. However, that is not the case! I am confused as to what the point would be to even attempt a gluten challenge. (It is not an option---I would be so terribly sick for so long---not worth it. Although, if I was crazy and decided to do it, I would do it in his office so he could personally see the pain and agony I go through----and, be sure to use his own personal bathroom, haha).
There is no point to this other than sharing my frustration. Apparently, it is time to find a new dr. Imagine that.
Celiac Disease
Morning Laura,
What can I say? You are correct in your reasoning. Your GI is/was a typical American GI doc, and as such, is an MCer's worst nightmare. As far as I can tell, they are also a celiac's worst nightmare, since it takes them an average of over 11 years to successfully diagnose a disease which has markers so obvious as to practically scream CELIAC. I can't decide if their worst problem is ignorance, or hard-headness, but regardless, their attitude makes life miserable for those of us who are gluten sensitive.
I've long suspected that I was a celiac, but my GI didn't find it, (he never bothered to look for it), so I can never be sure. At one time, I gave some serious consideration to doing a gluten challenge. Fortunately, Polly and others here convinced me how pointless it would be to intentionally make myself sick for probably 6 months to a year, just to get an official diagnosis, and make a GI happy. Like you, I'll never intentionally eat gluten again,
I'm a little confused about the "tests" he mentioned, which might make him want to re-evaluate whether or not you are really a celiac. Is he talking about a classic celiac blood test, and biopsies of the colon? If you have been GF for a while, the blood test will almost surely be negative, and you don't diagnose celiac disease with biopsies of the colon. Basically he seems to be suggesting that you cannot be a celiac, because you still have symptoms after being GF for so long. It's the old GI problem of "rare disease syndrome". They think that you can't have a disease that is considered to be rare, simply because the odds are against it. That means that they assume that it would be virtually impossible for anyone to have two rare diseases, since the odds against that are really huge. Guys who think like that are prime examples of why a little education can be a bad thing. They outsmart themselves by misunderstanding the concept of statistics.
It appears to me that he just wants to bleed your insurance company for as much as he can by giving unnecessary, (redundant), tests, and he doesn't care how much you suffer in the process. You're right to dump him, if you decide to do so--he's not worth a single one of the tears that you shed after hearing his thoughtless comments.
Sad to say, you're quite correct--that didn't come as any surprise. Sigh.
Tex
What can I say? You are correct in your reasoning. Your GI is/was a typical American GI doc, and as such, is an MCer's worst nightmare. As far as I can tell, they are also a celiac's worst nightmare, since it takes them an average of over 11 years to successfully diagnose a disease which has markers so obvious as to practically scream CELIAC. I can't decide if their worst problem is ignorance, or hard-headness, but regardless, their attitude makes life miserable for those of us who are gluten sensitive.
I've long suspected that I was a celiac, but my GI didn't find it, (he never bothered to look for it), so I can never be sure. At one time, I gave some serious consideration to doing a gluten challenge. Fortunately, Polly and others here convinced me how pointless it would be to intentionally make myself sick for probably 6 months to a year, just to get an official diagnosis, and make a GI happy. Like you, I'll never intentionally eat gluten again,
I'm a little confused about the "tests" he mentioned, which might make him want to re-evaluate whether or not you are really a celiac. Is he talking about a classic celiac blood test, and biopsies of the colon? If you have been GF for a while, the blood test will almost surely be negative, and you don't diagnose celiac disease with biopsies of the colon. Basically he seems to be suggesting that you cannot be a celiac, because you still have symptoms after being GF for so long. It's the old GI problem of "rare disease syndrome". They think that you can't have a disease that is considered to be rare, simply because the odds are against it. That means that they assume that it would be virtually impossible for anyone to have two rare diseases, since the odds against that are really huge. Guys who think like that are prime examples of why a little education can be a bad thing. They outsmart themselves by misunderstanding the concept of statistics.
It appears to me that he just wants to bleed your insurance company for as much as he can by giving unnecessary, (redundant), tests, and he doesn't care how much you suffer in the process. You're right to dump him, if you decide to do so--he's not worth a single one of the tears that you shed after hearing his thoughtless comments.
Sad to say, you're quite correct--that didn't come as any surprise. Sigh.
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.
Awwwwww, Laura!
You have just been a victim of the very common, clueless GI JERK DOC! Please do not be too upset - many here have had the same experience, unfortunately. Yes, you can get a new doc, but there just aren't many who know anything about MC. It seems it's now time for YOU to take charge and figure out whatever you believe would be the best treatment plan for you. And going back on gluten IS NOT AN OPTION, as you know. You will need to be very forceful with whatever doc you choose to work with you. What is your family doc like?
One thing that might help. You can email Dr. Fine at his website (www.finerhealth.com), tell him about your history and current problems, and request his advice. He usually answers emails himself (and fairly quickly, unless he is out on the lecture circuit).
I can't believe your GI said that it would be unusual for more than one thing to be causing the diarrhea (D). How incredibly uninformed. MC and CD (and even just gluten sensitivity and not fullblown CD) go hand in hand. I think Dr. Fine is now saying that almost everyone with MC has gluten sensitivity. And there are even other things, like C. difficile infection, that may be contributing to the D. And how about all of us here who have found out that we are multiply-intolerant and cannot tolerate other foods in addition to gluten - without suffering D?
Cheer up! And let us know your plan of action. We will be most excited to help!
Love,
Polly
You have just been a victim of the very common, clueless GI JERK DOC! Please do not be too upset - many here have had the same experience, unfortunately. Yes, you can get a new doc, but there just aren't many who know anything about MC. It seems it's now time for YOU to take charge and figure out whatever you believe would be the best treatment plan for you. And going back on gluten IS NOT AN OPTION, as you know. You will need to be very forceful with whatever doc you choose to work with you. What is your family doc like?
One thing that might help. You can email Dr. Fine at his website (www.finerhealth.com), tell him about your history and current problems, and request his advice. He usually answers emails himself (and fairly quickly, unless he is out on the lecture circuit).
I can't believe your GI said that it would be unusual for more than one thing to be causing the diarrhea (D). How incredibly uninformed. MC and CD (and even just gluten sensitivity and not fullblown CD) go hand in hand. I think Dr. Fine is now saying that almost everyone with MC has gluten sensitivity. And there are even other things, like C. difficile infection, that may be contributing to the D. And how about all of us here who have found out that we are multiply-intolerant and cannot tolerate other foods in addition to gluten - without suffering D?
Cheer up! And let us know your plan of action. We will be most excited to help!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Laura,
I had been wondering how you were. I'm glad the colonoscopy is over. I'm sorry your Dr. was such a disappointment. Sadly, they often/usually are as you can tell by other's comments.
I'm really glad you found this site before the colonoscopy. At least you know you have people willing to help you find options and support in whatever plan of action you choose.
There are years of accumulated experience here already and I know they will help whenever possible.
You are strong..........you WILL make it.
Love, Shirley
I had been wondering how you were. I'm glad the colonoscopy is over. I'm sorry your Dr. was such a disappointment. Sadly, they often/usually are as you can tell by other's comments.
I'm really glad you found this site before the colonoscopy. At least you know you have people willing to help you find options and support in whatever plan of action you choose.
There are years of accumulated experience here already and I know they will help whenever possible.
You are strong..........you WILL make it.
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Laura,
Darn Docs (except Polly)!!!
I haven't been back to my GI since my MC diagnosis. He prescribed drugs and told me to see him in 6 weeks (which seems like a long time when you have D 15 times per day). By the six week marker, I'd found this board, gone gluten free, and was on my way to feeling better. I'm glad he diagnoses me correctly but his idea of treatment left alot to be desired.
I don't plan to return to a GI unless something unexpected happens. I probably know more than any of them about my disease from the help of this board.
I assume you don't have a diagnosis on MC yet, since the lab results take a while. Let us know when you do.
Love, Jean
Darn Docs (except Polly)!!!
I haven't been back to my GI since my MC diagnosis. He prescribed drugs and told me to see him in 6 weeks (which seems like a long time when you have D 15 times per day). By the six week marker, I'd found this board, gone gluten free, and was on my way to feeling better. I'm glad he diagnoses me correctly but his idea of treatment left alot to be desired.
I don't plan to return to a GI unless something unexpected happens. I probably know more than any of them about my disease from the help of this board.
I assume you don't have a diagnosis on MC yet, since the lab results take a while. Let us know when you do.
Love, Jean
Be kind to everyone, because you never know what battles they are fighting.
Hi Laura,
I'm so sorry your GI was such a jerk. This is such a frustrating process to go through and it would be nice (wonderful actually) to get support and validation from your doctor. Unfortunately, very few of us have found it...especially from GI. I've been going through this the last several months and they are clueless. I always read about how doctors want you to be involved and part of the team regarding your health care...baloney...mine always make me feel like a desparate emotional woman for believing that diet can help me heal. But that's exactly what I'm doing with the help of these people. It's slow but it's working. I've reluctantly given up on getting any meaningful help from GI....it was just a waste of my time and left me in tears also.
You have already done the hardest part...getting rid of the gluten. The next step is to either take Dr. Fine's test to see what your other intolerences are...and/or eliminate the most common offenders and start a food journal...keeping track of everthing you put in your mouth. Start as simply as you can and slowly add one food at a time. There is lots of info on this site and lots of people here to help you with this.
Good luck Laura. You will get through this.
Love,
Cristi
I'm so sorry your GI was such a jerk. This is such a frustrating process to go through and it would be nice (wonderful actually) to get support and validation from your doctor. Unfortunately, very few of us have found it...especially from GI. I've been going through this the last several months and they are clueless. I always read about how doctors want you to be involved and part of the team regarding your health care...baloney...mine always make me feel like a desparate emotional woman for believing that diet can help me heal. But that's exactly what I'm doing with the help of these people. It's slow but it's working. I've reluctantly given up on getting any meaningful help from GI....it was just a waste of my time and left me in tears also.
You have already done the hardest part...getting rid of the gluten. The next step is to either take Dr. Fine's test to see what your other intolerences are...and/or eliminate the most common offenders and start a food journal...keeping track of everthing you put in your mouth. Start as simply as you can and slowly add one food at a time. There is lots of info on this site and lots of people here to help you with this.
Good luck Laura. You will get through this.
Love,
Cristi
Hey crew---
Well, I finally took the plunge and ordered my Enterolab tests today!!! I was super sick as soon as I woke up, and then again at work, and then again at work, and finally had to go home. Cried all morning. D, stomach cramping, nausea, and weakness. I was really slender on account of the Celiac but I am now down to 105 lbs....which is just too skinny for me. I want to know how a Dr. can potentially tell me this is "just" IBS, when it is so debilitating some days.
Luckily I have wonderful parents who just want me to get better --- they said to order every test they can do and they paid for it. Even better, my Mom wanted me to order a full set for my sister, since she has undiagnosed "issues"---but, not quite to my extent. Still, not fun and it would be nice to know what the heck we have....or, don't have.
In response to previous posts-
Tex, I have no idea what he means about "re-evaluating" if I really have Celiac. I was drug-induced and started crying when he said it so I couldn't punch him in the face
My blood tests were done recently and they came back negative. I don't know what his rationale is but he is obviously a moron. I have read just about every article and book (love Dr. Green's book!) so I know that gluten will never go back in me. I don't care if you want to call me a Celiac, gluten intolerant, or just a weirdo---I'M NOT EATING GLUTEN. I know better---it just makes me sad for others who come after me that DON'T know better. But, I also want to save the world. 
Polly-Thanks for your sweet words. I 'knew' that this guy was going to be worthless, but I am still relatively naieve and think the best of people...and hoped that he would "get it." I have now had two idiot GIs. Splendid! I just recently got a family dr (as we are newer to the area) and he is a bit shady on the Celiac front. I was seeing him for other things than Celiac and we disagreed on Celiac. He told me that the symptoms get better with age and it might not be a problem for me later on. I told him he was incorrect, and even IF, for some people, symptoms may ease, that certainly does not mean that the immune reaction is not occurring. Sigh. It frustrates me because I have a master's in human development that was research focused --- so I "know" how to read articles! I feel like Drs don't take me seriously because I am a young woman---how could I POSSIBLY know anything?
Shirley-Thanks for your words of encouragement. Most days I 'know' I will make it, but today was tough. I just hate not having control and not being able to live my life the way I want to. Which, to me, is not asking too much! I am a very driven person and hate having to leave work. I work with a lot of middle aged men who don't really know what is going on with me....they just know I'm sick lately (besides the CD)...I came to the conclusion today that most of them problem think I'm pregnant bc I'm always running to the bathroom! ha! (and for the record, I am not....but would like to be, one day, once this mess is straightened out).
Jean-I am thinking I will be in the same boat with you---do it without the docs. I admire you for finding answers "on your own" with the support of this board. Looks like I will be following in your footsteps. The thought occurred to me today---what if all these tests come back negative?! Although I certainly don't want an "ailment", I certainly do want to feel better.
Cristi-When you said, "mine always make me feel like a desparate emotional woman" --- I unfortunately can relate! I know that I am a smart young woman and it is frustrating to be underestimated and patronized. I luckily have great parents, great friends, and the best husband who see what I go through and know that I am struggling; that this is beyond IBS. I think my next step is just to do the Enterolab tests, wait for the results, and pray that Dr. Fine's tests shed some light so I can get back to life! Until then, I will continue to have my radar up for all closest bathrooms
I think I write the longest posts sometimes :) One day, I will sit down and post a picture so yall can put a face to my name, esp. since I know what yall look like!
Thanks for your support---luckily, we get another shot at life in the morning.
xoxo
Well, I finally took the plunge and ordered my Enterolab tests today!!! I was super sick as soon as I woke up, and then again at work, and then again at work, and finally had to go home. Cried all morning. D, stomach cramping, nausea, and weakness. I was really slender on account of the Celiac but I am now down to 105 lbs....which is just too skinny for me. I want to know how a Dr. can potentially tell me this is "just" IBS, when it is so debilitating some days.
Luckily I have wonderful parents who just want me to get better --- they said to order every test they can do and they paid for it. Even better, my Mom wanted me to order a full set for my sister, since she has undiagnosed "issues"---but, not quite to my extent. Still, not fun and it would be nice to know what the heck we have....or, don't have.
In response to previous posts-
Tex, I have no idea what he means about "re-evaluating" if I really have Celiac. I was drug-induced and started crying when he said it so I couldn't punch him in the face
My blood tests were done recently and they came back negative. I don't know what his rationale is but he is obviously a moron. I have read just about every article and book (love Dr. Green's book!) so I know that gluten will never go back in me. I don't care if you want to call me a Celiac, gluten intolerant, or just a weirdo---I'M NOT EATING GLUTEN. I know better---it just makes me sad for others who come after me that DON'T know better. But, I also want to save the world. Polly-Thanks for your sweet words. I 'knew' that this guy was going to be worthless, but I am still relatively naieve and think the best of people...and hoped that he would "get it." I have now had two idiot GIs. Splendid! I just recently got a family dr (as we are newer to the area) and he is a bit shady on the Celiac front. I was seeing him for other things than Celiac and we disagreed on Celiac. He told me that the symptoms get better with age and it might not be a problem for me later on. I told him he was incorrect, and even IF, for some people, symptoms may ease, that certainly does not mean that the immune reaction is not occurring. Sigh. It frustrates me because I have a master's in human development that was research focused --- so I "know" how to read articles! I feel like Drs don't take me seriously because I am a young woman---how could I POSSIBLY know anything?
Shirley-Thanks for your words of encouragement. Most days I 'know' I will make it, but today was tough. I just hate not having control and not being able to live my life the way I want to. Which, to me, is not asking too much! I am a very driven person and hate having to leave work. I work with a lot of middle aged men who don't really know what is going on with me....they just know I'm sick lately (besides the CD)...I came to the conclusion today that most of them problem think I'm pregnant bc I'm always running to the bathroom! ha! (and for the record, I am not....but would like to be, one day, once this mess is straightened out).
Jean-I am thinking I will be in the same boat with you---do it without the docs. I admire you for finding answers "on your own" with the support of this board. Looks like I will be following in your footsteps. The thought occurred to me today---what if all these tests come back negative?! Although I certainly don't want an "ailment", I certainly do want to feel better.
Cristi-When you said, "mine always make me feel like a desparate emotional woman" --- I unfortunately can relate! I know that I am a smart young woman and it is frustrating to be underestimated and patronized. I luckily have great parents, great friends, and the best husband who see what I go through and know that I am struggling; that this is beyond IBS. I think my next step is just to do the Enterolab tests, wait for the results, and pray that Dr. Fine's tests shed some light so I can get back to life! Until then, I will continue to have my radar up for all closest bathrooms
I think I write the longest posts sometimes :) One day, I will sit down and post a picture so yall can put a face to my name, esp. since I know what yall look like!
Thanks for your support---luckily, we get another shot at life in the morning.
xoxo
Celiac Disease
Hi Laura,
That was a great post. I agree with everything you said. You're clearly dedicated to finding solutions, whether your doctors are willing to help or not, and people who are dedicated, do get results.
If you have a photo that you would like to use as an avatar, I'll be happy to make an avatar from it, and upload it to the board, for use in your profile, if you'll email or PM it to me. If it needs cropping or anything else, that's not a problem, I can easily do that.
I hope that you're feeling much better in the morning.
Tex
That was a great post. I agree with everything you said. You're clearly dedicated to finding solutions, whether your doctors are willing to help or not, and people who are dedicated, do get results.
If you have a photo that you would like to use as an avatar, I'll be happy to make an avatar from it, and upload it to the board, for use in your profile, if you'll email or PM it to me. If it needs cropping or anything else, that's not a problem, I can easily do that.
I hope that you're feeling much better in the morning.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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kate_ce1995
- Rockhopper Penguin
- Posts: 1321
- Joined: Wed May 25, 2005 5:53 pm
- Location: Vermont
I unfortunately don't have time to read every word of all these wonderful posts, but my point from skimming is that what I've been told is that the blood test is the gold standard for diagnosis celiac disease. If the last blood work was negative but you'd been gluten free for some time, that doesn't mean you no longer have celiac disease, it means you are controling you diet well and the antibodies that they look for are no longer showing up in your blood. Kudos for you on that...I struggle very much with staying gf, but sure feel better when I do.
You are on the right road here. Many of us have ignored our doctor's recommendations for extra testing and medication, and have gained heath through diet. I was young too...my symptoms showed up at age 29 although I now suspect I had more subtle symptoms at least 2 years earlier.
Keep us posted on what you find out from your Entero lab tests.
Katy
You are on the right road here. Many of us have ignored our doctor's recommendations for extra testing and medication, and have gained heath through diet. I was young too...my symptoms showed up at age 29 although I now suspect I had more subtle symptoms at least 2 years earlier.
Keep us posted on what you find out from your Entero lab tests.
Katy
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artteacher
- Rockhopper Penguin
- Posts: 731
- Joined: Wed Aug 24, 2005 11:13 pm
.
Boy this is getting long!
Pepto Bismol was at first recommended by Dr. Fine, and thought to clear up MC in some people. The dosage is "mega" - if I remember right, 2 little dosage cups (that come with the liquid pepto) 3 times a day, for I think 2 months. I did it for 4-5 weeks, and it did help (normal poops, no bloating, ate anything) except that I developed salycillate poisoning. (I'm not spelling it correctly, and "poisoning" isn't a medical term, I'm sure). But taking too much of it for such a long time causes sleeplessness, fever, jitters, heart pounding. Bad stuff.
Bismuth is a antibacterial. I think one of the reasons it may help is that bacterial overgrowth is part of the problem with some people with MC.
Here's how touchy it can be to have MC and intolerances - I couldn't take the Pepto pills, or any pepto except the original liquid formulations without getting additional "D" because of the different sugars and other additives in subsequent formulations put out by the company. If you end up having additive or additional food intolerances, it might be necessary to go to a completely "clean" additive-free, preservative-free, sugar-free, chemical-free diet until you notice improvement. Then the trick is to add substances in one at a time so you can document your reactions without the complication of multiple additives.
AND get the testing by Enterolab, which you're doing. Hang in there!
Love, Marsha
Pepto Bismol was at first recommended by Dr. Fine, and thought to clear up MC in some people. The dosage is "mega" - if I remember right, 2 little dosage cups (that come with the liquid pepto) 3 times a day, for I think 2 months. I did it for 4-5 weeks, and it did help (normal poops, no bloating, ate anything) except that I developed salycillate poisoning. (I'm not spelling it correctly, and "poisoning" isn't a medical term, I'm sure). But taking too much of it for such a long time causes sleeplessness, fever, jitters, heart pounding. Bad stuff.
Bismuth is a antibacterial. I think one of the reasons it may help is that bacterial overgrowth is part of the problem with some people with MC.
Here's how touchy it can be to have MC and intolerances - I couldn't take the Pepto pills, or any pepto except the original liquid formulations without getting additional "D" because of the different sugars and other additives in subsequent formulations put out by the company. If you end up having additive or additional food intolerances, it might be necessary to go to a completely "clean" additive-free, preservative-free, sugar-free, chemical-free diet until you notice improvement. Then the trick is to add substances in one at a time so you can document your reactions without the complication of multiple additives.
AND get the testing by Enterolab, which you're doing. Hang in there!
Love, Marsha
Laura,
A while back you mentioned that your family enjoys fruit smoothies.
I love these too, but I failed to mention before, that in the very common event that Enterolab tests show you to be reacting the dietary yeast, remember that this is naturally occurring on fruits, and even vegetables, so it's unavoidable.
I know that I don't feel my best, gut-wise, if I ingest a bunch (volume) of fruit smoothies over the course of several days in a row.
Watch out for any rice product that ssays "enriched." I'm sure you've already seen that it is likely to have gluten in it from your other helpful celiac sites.
While I'm bringing this up, do you know of any boxed rices that AREN'T enriched from your reading?
Reason for bringing this up now is that yesterday evening, i visited a regular grocery store, and saw the word "enriched" on the front of my old standbye, Uncle Ben's boiling bag type rice, my old standbye for a long time after i discovered the gluten problem.
Couldn't remember whether the boxes I used to get said that or not, so wondered whether or not anything's changed with that product. Do you know?
About the soluble fiber, I think that things like squash (well cooked, of course) are higher in soluble fiber than they are in insoluble. If I could, I'd post a site to the board with a list of foods high in soluble fiber, but since this is just a webtv, I'm not sure exactly how to transfer those sites here, if it's even possible.
I think I just googled, and found some good lists and information without too much trouble, however. This might be a good way to introduce some new foods that, perhaps you've gotten away from eating for a while, if you'd like to start eating more of them.
Many still have a pretty good proportion of insoluble in addition to the soluble fiber, so consider the total. Don't forget to peal things to eliminate that fiber.
Big, important thing is to replace the nutrients that you're losing through all that fluid loss as well as from not eating fortified grains -- i.e., with the all important folate/folic acid, for example.
There's a line called "Biochem" of sublinqual B12/folate with a tiny bit of Vit C that you might want to try.
Check the label, but it's free of most common allergens like ours.
Look for the words, methylcobalamine as opposed to the common cyanocobalamine as the methyl form will be absorbed directly into the blood stream when inserted and dissolved right under the tongue. Your B-12 level should be greater than 400 units, rather than the 200 units on most lab slips as a lower limit of normal range. There are people who have neurological symptoms even when ttheir B-12 is above 200, but below 400.
Your doc can keep up with your progress by testing your blood levels, of this and other relevant nutrients that you may be malabsorbing.
Yes, I would look into a good probiotic.
Whole Foods has one in the refrigerated section that you just chew up, and it is free of common allergens.
It's one of the few that is produced "milk free" as it says right under the name on the front of the bottle. Most are produced with milk, so read carefully. I like this one because it's kept alive by refrigeration.
Whole Foods has lots of vitamins, etc. that are free of most allergens, but you have to be really thorough in reading all the labels.
One thing that I do/did for a while, was to alternate the sublingual B-12/folate or folic acid with a WF's brand allergen free B vitamins capsule to give me a few of the other B vitamins besides those in the sublingual. It's probably a good idea to take at least a half of a B-6 whenever taking B-12/folate. Some of these things are supposed to be taken together. Think there's another B vitamin (included in the B-vitamins capsule, by the way), that it's a good idea to include with B-12/folate and B-6, but the name escapes me.
Falling asleep MANY times during this post, so best close now.
Oh, and be sure to stay hydrated and get plenty of electrolytes on board as long as you're having lots of diarrhea.
Yours, Luce
A while back you mentioned that your family enjoys fruit smoothies.
I love these too, but I failed to mention before, that in the very common event that Enterolab tests show you to be reacting the dietary yeast, remember that this is naturally occurring on fruits, and even vegetables, so it's unavoidable.
I know that I don't feel my best, gut-wise, if I ingest a bunch (volume) of fruit smoothies over the course of several days in a row.
Watch out for any rice product that ssays "enriched." I'm sure you've already seen that it is likely to have gluten in it from your other helpful celiac sites.
While I'm bringing this up, do you know of any boxed rices that AREN'T enriched from your reading?
Reason for bringing this up now is that yesterday evening, i visited a regular grocery store, and saw the word "enriched" on the front of my old standbye, Uncle Ben's boiling bag type rice, my old standbye for a long time after i discovered the gluten problem.
Couldn't remember whether the boxes I used to get said that or not, so wondered whether or not anything's changed with that product. Do you know?
About the soluble fiber, I think that things like squash (well cooked, of course) are higher in soluble fiber than they are in insoluble. If I could, I'd post a site to the board with a list of foods high in soluble fiber, but since this is just a webtv, I'm not sure exactly how to transfer those sites here, if it's even possible.
I think I just googled, and found some good lists and information without too much trouble, however. This might be a good way to introduce some new foods that, perhaps you've gotten away from eating for a while, if you'd like to start eating more of them.
Many still have a pretty good proportion of insoluble in addition to the soluble fiber, so consider the total. Don't forget to peal things to eliminate that fiber.
Big, important thing is to replace the nutrients that you're losing through all that fluid loss as well as from not eating fortified grains -- i.e., with the all important folate/folic acid, for example.
There's a line called "Biochem" of sublinqual B12/folate with a tiny bit of Vit C that you might want to try.
Check the label, but it's free of most common allergens like ours.
Look for the words, methylcobalamine as opposed to the common cyanocobalamine as the methyl form will be absorbed directly into the blood stream when inserted and dissolved right under the tongue. Your B-12 level should be greater than 400 units, rather than the 200 units on most lab slips as a lower limit of normal range. There are people who have neurological symptoms even when ttheir B-12 is above 200, but below 400.
Your doc can keep up with your progress by testing your blood levels, of this and other relevant nutrients that you may be malabsorbing.
Yes, I would look into a good probiotic.
Whole Foods has one in the refrigerated section that you just chew up, and it is free of common allergens.
It's one of the few that is produced "milk free" as it says right under the name on the front of the bottle. Most are produced with milk, so read carefully. I like this one because it's kept alive by refrigeration.
Whole Foods has lots of vitamins, etc. that are free of most allergens, but you have to be really thorough in reading all the labels.
One thing that I do/did for a while, was to alternate the sublingual B-12/folate or folic acid with a WF's brand allergen free B vitamins capsule to give me a few of the other B vitamins besides those in the sublingual. It's probably a good idea to take at least a half of a B-6 whenever taking B-12/folate. Some of these things are supposed to be taken together. Think there's another B vitamin (included in the B-vitamins capsule, by the way), that it's a good idea to include with B-12/folate and B-6, but the name escapes me.
Falling asleep MANY times during this post, so best close now.
Oh, and be sure to stay hydrated and get plenty of electrolytes on board as long as you're having lots of diarrhea.
Yours, Luce