Cristi,
I'm glad you like your naturopath. It's great to have the regular support. It's probably safe to say that many naturopaths may be unfamiliar with LC because it's such a new and rare disease.
I began to see my naturopath especially for heavy metal detox, but naturally I rely on her for my whole treatment plan. As soon as she heard about the LC, she gave me an anti-inflamation diet (which did not include gluten) and gave me one or two selected supplements to support the gastrointenstinal tract, in addition to focusing the biotherapeutic drainage (heavy metal detox using homeopathics) appropriately. I really like my naturopath too. I don't know what I would have done without her in this process!
Sending you good vibes! Celia
Doctor's reaction to Dr. Fine's tests
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Cristi,
I use the patches as I had mine out a long time ago. Using the transdermal method of delivery is much easier on the liver, by the way, since it only has to make one pass through. The name of the one I take is Alora, and these only have to be applied twice a week. This one caused me less of a reaction to the adhesive than the other one I used, the name of which escapes me right now.
I recently talked to my endochrinologist who is an expert in metabolic bone disorders among other things, an M.D. and a Ph.D researcher. While I was there, we discussed these patches, and he mentioned that there's another brand of patches that he likes the best. Should've written down the name, but something makes me want to say it started with a "V." If I can remember, I'll try to find out what that would it is for sure, and post back here, but it may take me a while. We get pretty technical in our discussions, but with my memory, I can't begin to repeat back to you the chemical reason this particular one is so good.
I'm going to keep taking it for the sake of my bones, along with the calcium supplements and the new recommended amounts of Vit. D that is so good for all sorts of things.
Although some people think HRT's are contributory to M.C., I find that as long as I stay free of my allergens, I'm apparentlty pretty free of inflammation inside, so I have opted to stick with the patches. I'm considering trying the version that my endo recommended if I ever get around to calling the doc who does my well woman exam to get an order for some. Hopefully, the adhesive on that one will be kind to the skin like the Alora one is. The adhesive alone may be the final determinant, at least for now.
I have osteoporosis, so I prefer the HRT to the type of medication that my doc would prescribe for bone building, at least for now.
I'm asymptomatic as far as M.C. and related symptoms are concerned, so that's a good sign I'm doing something right, I guess.
Yours, Luce
I use the patches as I had mine out a long time ago. Using the transdermal method of delivery is much easier on the liver, by the way, since it only has to make one pass through. The name of the one I take is Alora, and these only have to be applied twice a week. This one caused me less of a reaction to the adhesive than the other one I used, the name of which escapes me right now.
I recently talked to my endochrinologist who is an expert in metabolic bone disorders among other things, an M.D. and a Ph.D researcher. While I was there, we discussed these patches, and he mentioned that there's another brand of patches that he likes the best. Should've written down the name, but something makes me want to say it started with a "V." If I can remember, I'll try to find out what that would it is for sure, and post back here, but it may take me a while. We get pretty technical in our discussions, but with my memory, I can't begin to repeat back to you the chemical reason this particular one is so good.
I'm going to keep taking it for the sake of my bones, along with the calcium supplements and the new recommended amounts of Vit. D that is so good for all sorts of things.
Although some people think HRT's are contributory to M.C., I find that as long as I stay free of my allergens, I'm apparentlty pretty free of inflammation inside, so I have opted to stick with the patches. I'm considering trying the version that my endo recommended if I ever get around to calling the doc who does my well woman exam to get an order for some. Hopefully, the adhesive on that one will be kind to the skin like the Alora one is. The adhesive alone may be the final determinant, at least for now.
I have osteoporosis, so I prefer the HRT to the type of medication that my doc would prescribe for bone building, at least for now.
I'm asymptomatic as far as M.C. and related symptoms are concerned, so that's a good sign I'm doing something right, I guess.
Yours, Luce
I found this list of thyroid meds but it apparently doesn't cover them all.
Yours isn't even listed. Perhaps it doesn't cover patches. I had no idea there were so many.
Prescription Thyroid Drugs
The following drugs are prescribed in the US:
Armour
Thyroid
Cytomel
Levo-T
Levothroid
Levothyroxine
Levoxyl
Liothyronine
Liotrix
Synthroid
Thyrar
Thyroid Strong
Thyroglobulin
Thyrolar
Triostat Westhroid
In Canada, the following are also available:
Eltroxin*
PMS-Levothyroxine Sodium
Yours isn't even listed. Perhaps it doesn't cover patches. I had no idea there were so many.
Prescription Thyroid Drugs
The following drugs are prescribed in the US:
Armour
Thyroid
Cytomel
Levo-T
Levothroid
Levothyroxine
Levoxyl
Liothyronine
Liotrix
Synthroid
Thyrar
Thyroid Strong
Thyroglobulin
Thyrolar
Triostat Westhroid
In Canada, the following are also available:
Eltroxin*
PMS-Levothyroxine Sodium
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
Hi Everyone,
Still having diarrhea....but not huge volumes.Had my iodine uptake test...will find out the results on the 19 of this month.
I'm also going to take a stool test for bacterial imbalence and parasites. My reasons for this are..
1. Dr. Fine mentions gut bacterial imbalences as a problem with MC
2. I took Prilosec for 6 years wich alters the ph of the gut and then what will grow in it.
3. All the antibiotics I took after my surgery late last year.
So I'm hoping to figure out another part of my problem.
I'm sure I'm beginning to sound like a broken record here....but I still have diet questions. So it sounds like Tex ate meat and potatoes to get to remission, and Celia eats meats and vegetables.SO my first question is for Joanna....I understand you took entocort while going on a gluten free diet......were you on the paleo diet at that time or did you do that later? If you cut out grains and nightshade veggies later...was it bacause they were giving you diarrhea or was it bacause you just felt better getting rid of rice and potatoes? If you ever had problems again would you consider going back on the entocort?
My next diet question is for Polly. You were on a gf diet for 6 mos before you had a formed stool....so how do you know what you are reacting to if you always are having diarrhea? Did you eat the same foods everyday or vary it and just exclude gluten? I understand you are on the paleo diet as well.....Did you do that before or after the formed stool? If it's after ...then did you do it because you were getting D and needed to eliminate rice ,potatoes and beans.....or did you do it because you wanted more energy or to feel better?
So as I understand this....I avoid all food intolerences. I can eat meat, fish, well cooked veggies, well cooked friut. Perhaps i can eat small amounts of rice or potatoes ...but that is more questionable. And beans and legumes are a no no. So...I stick to this plan even when having diarrhea as I won't be able to figure out if one food is bothering me more than another until my diarrhea goes away. So I stop analizing my diet until I get remission????? Am I understanding the whole picture?
I hope I'm not being a pest.....this stuff puts me in such a brain fog that I'm not sure I'm getting it all the time. I know I asked questions to certain people ...but I welcome anyone who thinks they can help.
Thanks again everyone.
Love,
Cristi
Still having diarrhea....but not huge volumes.Had my iodine uptake test...will find out the results on the 19 of this month.
I'm also going to take a stool test for bacterial imbalence and parasites. My reasons for this are..
1. Dr. Fine mentions gut bacterial imbalences as a problem with MC
2. I took Prilosec for 6 years wich alters the ph of the gut and then what will grow in it.
3. All the antibiotics I took after my surgery late last year.
So I'm hoping to figure out another part of my problem.
I'm sure I'm beginning to sound like a broken record here....but I still have diet questions. So it sounds like Tex ate meat and potatoes to get to remission, and Celia eats meats and vegetables.SO my first question is for Joanna....I understand you took entocort while going on a gluten free diet......were you on the paleo diet at that time or did you do that later? If you cut out grains and nightshade veggies later...was it bacause they were giving you diarrhea or was it bacause you just felt better getting rid of rice and potatoes? If you ever had problems again would you consider going back on the entocort?
My next diet question is for Polly. You were on a gf diet for 6 mos before you had a formed stool....so how do you know what you are reacting to if you always are having diarrhea? Did you eat the same foods everyday or vary it and just exclude gluten? I understand you are on the paleo diet as well.....Did you do that before or after the formed stool? If it's after ...then did you do it because you were getting D and needed to eliminate rice ,potatoes and beans.....or did you do it because you wanted more energy or to feel better?
So as I understand this....I avoid all food intolerences. I can eat meat, fish, well cooked veggies, well cooked friut. Perhaps i can eat small amounts of rice or potatoes ...but that is more questionable. And beans and legumes are a no no. So...I stick to this plan even when having diarrhea as I won't be able to figure out if one food is bothering me more than another until my diarrhea goes away. So I stop analizing my diet until I get remission????? Am I understanding the whole picture?
I hope I'm not being a pest.....this stuff puts me in such a brain fog that I'm not sure I'm getting it all the time. I know I asked questions to certain people ...but I welcome anyone who thinks they can help.
Thanks again everyone.
Love,
Cristi
Hi Starfire!
The HRT I was referring to was for estrogen replacement, the Alora patch.
I take Armour thyroid (T3 AND T4) and boost the T4 a bit with Levoxyl. My doc is one who believes that both T3 and T4 should be titrated according to blood levels, but many docs poo-poo that saying that the body will convert one form to the other, so they just give 'em Synthroid and let it go at that. I'm very happy with this regimen, but then, I started out with this, but other people have done it both ways, and just feel like they are better with the T3&T4 plus more T4 as needed. I have no thyroid gland at all, so I HAVE to take thyroid hormones of some kind.
Scary thought, isn't it? Luce
The HRT I was referring to was for estrogen replacement, the Alora patch.
I take Armour thyroid (T3 AND T4) and boost the T4 a bit with Levoxyl. My doc is one who believes that both T3 and T4 should be titrated according to blood levels, but many docs poo-poo that saying that the body will convert one form to the other, so they just give 'em Synthroid and let it go at that. I'm very happy with this regimen, but then, I started out with this, but other people have done it both ways, and just feel like they are better with the T3&T4 plus more T4 as needed. I have no thyroid gland at all, so I HAVE to take thyroid hormones of some kind.
Scary thought, isn't it? Luce
Cristi,
I think it's confusing you because members of this group who were long since in allergen-free remission, decided to continue to improve their diets beyond that which was necessary to relieve their symptoms.
It's like when you've just begun to feel 10 to 20 yrs younger, you think, maybe I could feel 30 yrs younger, or like Karen, run a marathon, AND WIN!
However, that was sort of a group think tank time in which several of us were sort of learning everything together through articles and research studies which we shared and discussed here. Problem with that is that it may be confusing to newbies who need to learn more basic types of things in the very beginning.
At any rate, I can so identify with that brain overload sensation when you are just starting this diet, and wondering if it's ever going to work. Who wouldn't be impatient with still seeing a little diarrhea after ALL this effort.
I know that you want to know EVERYTHING, and right NOW, but I suggest you keep your focus on the goal of removing all your known by stool testing allergens. You are fortunate to have done all of yours on the first specimen. I did half of mine with a second specimen months later, so that was another delay for me even though I did observe the breakthrough diarrheal episodes after eating certain foods.
You will begin to get sooo excited when you start to see very gradual changes in your stools toward normal formed ones, even though they will go 2 steps forward and 1 step backwards at times. This is what gives you hope. When you start to get used to the idea and can free your mind up from this enough to be able to relax, then you'll be able to decide about some of the refinements toward better health, in general.
Main thing is you are right on schedule, so don't worry that you must be doing something wrong just because some of us are a little stricter with our diets just because we want to be. If you feel like you've just got to have an allergen-free cookie of some kind that doesn't list ingredients you know you react to, then I'd say go ahead and have some of those just so you won't feel so deprived. After a while, those will just be emergency foods, as the cravings will leave, or at least it seems that most of us no longer have those, and enjoy the healthier things in life now. We find them actually simplier.
I feel a little guilty saying this because of late, I've had to rely on processed gf type stuff so much, due to my 24 hour caregiving situation which has gotten more time consuming presently during the daytime - hardly anytime to cook anymore, it seems, and then, too many interruptions to be safe in the kitchen, and I'm just too tired after Mom goes to bed, so...
I can really tell the difference in the way I feel when I'm leaning to calories derived from starchy foods, and cokes without so many well balanced meals, regardless of the fact that my stools are formed. I wish I had a home chef right about now! Ha!
I think I may actually have acquired a virus or something due to my unhealthy new habits, so I don't feel so good right now. Waah!
Keep asking questions so that we'll get back into practice answering them.
Yours, Luce
I think it's confusing you because members of this group who were long since in allergen-free remission, decided to continue to improve their diets beyond that which was necessary to relieve their symptoms.
It's like when you've just begun to feel 10 to 20 yrs younger, you think, maybe I could feel 30 yrs younger, or like Karen, run a marathon, AND WIN!
However, that was sort of a group think tank time in which several of us were sort of learning everything together through articles and research studies which we shared and discussed here. Problem with that is that it may be confusing to newbies who need to learn more basic types of things in the very beginning.
At any rate, I can so identify with that brain overload sensation when you are just starting this diet, and wondering if it's ever going to work. Who wouldn't be impatient with still seeing a little diarrhea after ALL this effort.
I know that you want to know EVERYTHING, and right NOW, but I suggest you keep your focus on the goal of removing all your known by stool testing allergens. You are fortunate to have done all of yours on the first specimen. I did half of mine with a second specimen months later, so that was another delay for me even though I did observe the breakthrough diarrheal episodes after eating certain foods.
You will begin to get sooo excited when you start to see very gradual changes in your stools toward normal formed ones, even though they will go 2 steps forward and 1 step backwards at times. This is what gives you hope. When you start to get used to the idea and can free your mind up from this enough to be able to relax, then you'll be able to decide about some of the refinements toward better health, in general.
Main thing is you are right on schedule, so don't worry that you must be doing something wrong just because some of us are a little stricter with our diets just because we want to be. If you feel like you've just got to have an allergen-free cookie of some kind that doesn't list ingredients you know you react to, then I'd say go ahead and have some of those just so you won't feel so deprived. After a while, those will just be emergency foods, as the cravings will leave, or at least it seems that most of us no longer have those, and enjoy the healthier things in life now. We find them actually simplier.
I feel a little guilty saying this because of late, I've had to rely on processed gf type stuff so much, due to my 24 hour caregiving situation which has gotten more time consuming presently during the daytime - hardly anytime to cook anymore, it seems, and then, too many interruptions to be safe in the kitchen, and I'm just too tired after Mom goes to bed, so...
I can really tell the difference in the way I feel when I'm leaning to calories derived from starchy foods, and cokes without so many well balanced meals, regardless of the fact that my stools are formed. I wish I had a home chef right about now! Ha!
I think I may actually have acquired a virus or something due to my unhealthy new habits, so I don't feel so good right now. Waah!
Keep asking questions so that we'll get back into practice answering them.
Yours, Luce
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Cristi,
Just wrote a fairly long post to you but lost it in transition. I've gotta dash of to the shop now so will post later. Hope your having a good day.
Love,
Joanna
Just wrote a fairly long post to you but lost it in transition. I've gotta dash of to the shop now so will post later. Hope your having a good day.
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
Luce,
It's the Vivelle patch you're thinking of, I'd guess. I've used it for a couple years. A very small dose - .025. I have had no ovaries for almost 15 years. Been on some form of HRT most of that time.
I feel it's been very beneficial to me in several ways. Hasn't prevented
osteoporosis though.
Alice
It's the Vivelle patch you're thinking of, I'd guess. I've used it for a couple years. A very small dose - .025. I have had no ovaries for almost 15 years. Been on some form of HRT most of that time.
I feel it's been very beneficial to me in several ways. Hasn't prevented
osteoporosis though.
Alice
Dear Cristi,
You've asked excellent questions! Everyone on the forum is eager to help, so don't worry about asking away. I'm sure Joanna and Polly will give you some great input.
I think you are smart to get the testing done on your various medical issues. No need to apologize for that. Your situation is complex, and MC may not be the only factor.
I took antibiotics a few weeks before I became ill. I would bet that antibiotics play a role for many of us. They play havoc with the balance of good to bad bugs in your gut which is supposed to be something like 85% / 15%. I was tested and definitely had dysbiosis myself. I can't imagine anyone having a colon problem and not having dysbiosis!
Hugs, Celia
You've asked excellent questions! Everyone on the forum is eager to help, so don't worry about asking away. I'm sure Joanna and Polly will give you some great input.
I think you are smart to get the testing done on your various medical issues. No need to apologize for that. Your situation is complex, and MC may not be the only factor.
I took antibiotics a few weeks before I became ill. I would bet that antibiotics play a role for many of us. They play havoc with the balance of good to bad bugs in your gut which is supposed to be something like 85% / 15%. I was tested and definitely had dysbiosis myself. I can't imagine anyone having a colon problem and not having dysbiosis!
Hugs, Celia
I beleive in magic!
Alice,
Do you mean that the Vivelle, in particular, has been beneficial as compared to the others? I'd love to get a PM about it, if you've got time. I've done well with the Alora, but since the biochemistry of the Vivelle has some advantages, every little bit helps. It would be a shame to feel better on the Vivelle, but have to stop it because of an adhesive reaction, but I'll bet that's what would happen. Maybe my immune system has calmed down enough now that I won't have so many strange reactions to meds and things like before the diet.
Thanks!
Yours, Luce
Do you mean that the Vivelle, in particular, has been beneficial as compared to the others? I'd love to get a PM about it, if you've got time. I've done well with the Alora, but since the biochemistry of the Vivelle has some advantages, every little bit helps. It would be a shame to feel better on the Vivelle, but have to stop it because of an adhesive reaction, but I'll bet that's what would happen. Maybe my immune system has calmed down enough now that I won't have so many strange reactions to meds and things like before the diet.
Thanks!
Yours, Luce
Cristi,
Sorry, but I miss lots of threads, and forget half the others. Could you please tell me what your three day stool test is called, specifically?
There used to be a three day stool test for fecal fat which can still be done today, but I don't think many docs order that anymore due to the fact that it's so hard to get a complete three days' worth, and it's difficult to handle all that poop. I FEEL for ya!
You might be interested in googling "Best Bet Diet." It's simply a very good anti-inflammatory diet that's found on a site that's targeted mainly at people with M.S. which is one of the diseases in the family of M.C., celiac disease, and other gs autoimmune conditions.
I think an anti-inflammatory diet is the best way to go for general health, particularly for those of us already in the throws of these multi-faceted conditions. I, personally, would love to consistently be able to eat this way, and did pretty much until my mom got so bad recently. I plan to go back to eating anti-inflammatory as soon as I can manage it.
From the survey, I seem to have had more autoimmune conditions than many people here, although there seems to have been at least one person on the board with each one of them. Some of them seem to be very common. That's why I lean toward the anti-nflammatory diet. Dr. Fine eats a VERY anti-inflammatory diet, by the way.
Celia,
Are you familiar with the work of Dr. William Rea, M.D.? I sat with him at the conference I attended in Dallas a while back where he was one of the speakers.
When I returned here, I happened to run into someone who told me that he was the Michael DeBakey of Environmental Medicine.
Anyway, I thought he was telling some of the other speakers at the table when we were eating that he was interested in research on the hypothalmus. Funny, but I had been thinking along the lines of the higher centers of the brain a while back, but can't remember what made me start thinking along those lines. Could it be that ultimately, the excess generation of zonulin will be traced back to some characteristic of the hypothalmus?
At any rate, it is likely that all these related diseases involve increased porousness of the gut, and that means that zonulin must be increased in anyone with any of these conditions. Does anyone know if Dr. Fasano or anyone has actually tested people with these other conditions for the amount of zonulin they actually have, even if it's just a preliminary finding on small numbers of people? Polly, is this your understanding of what Dr. Fasano is expecting to find -- increased zonulin in all these entities?
Oh, Celia, like I said earlier, I'm having a hard time keeping up, not being able to read all the posts, and then forgetting things late at night. I wasn't sure why you were thinking that Cristi's condition might be more complicated? Perhaps you can update me and anyone else who might not know what you meant.
I'm pretty sure that all of us had dysbiosis while we were still very ill, by the way.
Sorry, Cristi, hope ya don't mind my asking in public? Ha!
Yours, Luce
Sorry, but I miss lots of threads, and forget half the others. Could you please tell me what your three day stool test is called, specifically?
There used to be a three day stool test for fecal fat which can still be done today, but I don't think many docs order that anymore due to the fact that it's so hard to get a complete three days' worth, and it's difficult to handle all that poop. I FEEL for ya!
You might be interested in googling "Best Bet Diet." It's simply a very good anti-inflammatory diet that's found on a site that's targeted mainly at people with M.S. which is one of the diseases in the family of M.C., celiac disease, and other gs autoimmune conditions.
I think an anti-inflammatory diet is the best way to go for general health, particularly for those of us already in the throws of these multi-faceted conditions. I, personally, would love to consistently be able to eat this way, and did pretty much until my mom got so bad recently. I plan to go back to eating anti-inflammatory as soon as I can manage it.
From the survey, I seem to have had more autoimmune conditions than many people here, although there seems to have been at least one person on the board with each one of them. Some of them seem to be very common. That's why I lean toward the anti-nflammatory diet. Dr. Fine eats a VERY anti-inflammatory diet, by the way.
Celia,
Are you familiar with the work of Dr. William Rea, M.D.? I sat with him at the conference I attended in Dallas a while back where he was one of the speakers.
When I returned here, I happened to run into someone who told me that he was the Michael DeBakey of Environmental Medicine.
Anyway, I thought he was telling some of the other speakers at the table when we were eating that he was interested in research on the hypothalmus. Funny, but I had been thinking along the lines of the higher centers of the brain a while back, but can't remember what made me start thinking along those lines. Could it be that ultimately, the excess generation of zonulin will be traced back to some characteristic of the hypothalmus?
At any rate, it is likely that all these related diseases involve increased porousness of the gut, and that means that zonulin must be increased in anyone with any of these conditions. Does anyone know if Dr. Fasano or anyone has actually tested people with these other conditions for the amount of zonulin they actually have, even if it's just a preliminary finding on small numbers of people? Polly, is this your understanding of what Dr. Fasano is expecting to find -- increased zonulin in all these entities?
Oh, Celia, like I said earlier, I'm having a hard time keeping up, not being able to read all the posts, and then forgetting things late at night. I wasn't sure why you were thinking that Cristi's condition might be more complicated? Perhaps you can update me and anyone else who might not know what you meant.
I'm pretty sure that all of us had dysbiosis while we were still very ill, by the way.
Sorry, Cristi, hope ya don't mind my asking in public? Ha!
Yours, Luce