Hi Tex,
Hmmmm. I wonder if tumors in those glands would show up on a brain scan or if they require more complicated tests to diagnose. That is about the only body part that hasn't been tested.LOL.
Love,
Cristi
Paging Cristi!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Here's some information on diagnosing proceedures:
http://www.neurosurgerytoday.org/what/p ... uitary.asp
http://www.merck.com/mmhe/sec13/ch162/ch162c.html
http://www.postgradmed.com/issues/1998/ ... chmidt.htm
Love,
Tex
http://www.neurosurgerytoday.org/what/p ... uitary.asp
http://www.merck.com/mmhe/sec13/ch162/ch162c.html
http://www.postgradmed.com/issues/1998/ ... chmidt.htm
Love,
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 Cristi,
I think that I must've gone from hyperthyroid to hypothyroid, but even with the goiter that got me to the surgeon and endo,, my levels were surprisingly normal on the blood tests. Other tests were sort of weird. I think the whole thing was related to antibodies attacking the thyroid, even though I tested negative for these antibodies on blood testing.
I hadn't had thyroid testing in maybe 10 yrs when I came up with that goiter, but those had been pretty normal or at least what was labeled normal back then.
I will always wonder what my thyroid levels would've been had I had more regular checking of it during those ten yrs.
In my mind, it was all related to the gluten sensitivity, but, no way to prove it.
Yours, Luce
I think that I must've gone from hyperthyroid to hypothyroid, but even with the goiter that got me to the surgeon and endo,, my levels were surprisingly normal on the blood tests. Other tests were sort of weird. I think the whole thing was related to antibodies attacking the thyroid, even though I tested negative for these antibodies on blood testing.
I hadn't had thyroid testing in maybe 10 yrs when I came up with that goiter, but those had been pretty normal or at least what was labeled normal back then.
I will always wonder what my thyroid levels would've been had I had more regular checking of it during those ten yrs.
In my mind, it was all related to the gluten sensitivity, but, no way to prove it.
Yours, Luce
Hiya Cristi!
As you probably guessed, most of the questions I was asking you had to do with the pituitary. Your naturopath (and Tex) were smart to think of it.
Problems with the pituitary gland can cause hypothyroidism, adrenal insuffiency, "female" problems, increased excretion of water from the kidneys (thus increased thirst and urination), eye problems, etc. Some or all of the other glands can be affected. I guess the reason your doc did not explore it further is because you have tests that show hyPER (and not hyPO) thyroidism. It would be very unusual to have hyperthyroidism with a pituitary problem (although it can occur - I saw an article documenting 6 cases where it did occur, but it occurred mostly after some kind of brain trauma).
I wonder why they are calling your case "subclinical" ?- that term usually means that you have few if any symptoms/findings. Maybe because the THS was "almost" normal, although the uptake test was certainly positive. And you had a striking response to the Tapazole. Anyway, it is true, as you mentioned, that subclinical Grave's disease often resolves on its own.
Or, in some cases, can lead to eventual hyPOthyroidism.
Here is what I would do if I were you - adopt a "wait and see" approach for now. I do believe, as Luce said, that gluten can mess up many body systems. Gluten intolerance is an autoimmune (AI) disease and seems to go along with many other AI diseases - and perhaps even be an underlying factor in developing other AI diseases like rheumatoid arthritis, thyroid problems, (Grave's is considered to be AI), and who knows what all! There are even anecdotal cases of people whose lupus or MS resolved on a GF diet. Quite a few folks here also had problems other than MC when first diagnosed - problems with the pancreas, gall bladder, etc. - which resolved once they had been GF for a while.
You are now 7 mo. past your MC diagnosis and having mostly formed stools and only in the AM. You are doing much better than I did at that stage. I went a full 8 and 1/2 months after going GF before I saw anything other than watery D 5-6 times throughout the day. One reason you are doing better is because you discovered and eliminated other triggers from the beginning, while I started only with gluten and dairy and then had to discover the others one by one. Also, had Entocort been available then, it may have helped to reduce my gut inflammation faster. Anyway, it can take up to 2 years or more for the gut to return to normal.
Of course, I recommend "wait and see" only as long as you are stable and gradually improving.
Love,
Polly
As you probably guessed, most of the questions I was asking you had to do with the pituitary. Your naturopath (and Tex) were smart to think of it.
Problems with the pituitary gland can cause hypothyroidism, adrenal insuffiency, "female" problems, increased excretion of water from the kidneys (thus increased thirst and urination), eye problems, etc. Some or all of the other glands can be affected. I guess the reason your doc did not explore it further is because you have tests that show hyPER (and not hyPO) thyroidism. It would be very unusual to have hyperthyroidism with a pituitary problem (although it can occur - I saw an article documenting 6 cases where it did occur, but it occurred mostly after some kind of brain trauma).
I wonder why they are calling your case "subclinical" ?- that term usually means that you have few if any symptoms/findings. Maybe because the THS was "almost" normal, although the uptake test was certainly positive. And you had a striking response to the Tapazole. Anyway, it is true, as you mentioned, that subclinical Grave's disease often resolves on its own.
Or, in some cases, can lead to eventual hyPOthyroidism.
Here is what I would do if I were you - adopt a "wait and see" approach for now. I do believe, as Luce said, that gluten can mess up many body systems. Gluten intolerance is an autoimmune (AI) disease and seems to go along with many other AI diseases - and perhaps even be an underlying factor in developing other AI diseases like rheumatoid arthritis, thyroid problems, (Grave's is considered to be AI), and who knows what all! There are even anecdotal cases of people whose lupus or MS resolved on a GF diet. Quite a few folks here also had problems other than MC when first diagnosed - problems with the pancreas, gall bladder, etc. - which resolved once they had been GF for a while.
You are now 7 mo. past your MC diagnosis and having mostly formed stools and only in the AM. You are doing much better than I did at that stage. I went a full 8 and 1/2 months after going GF before I saw anything other than watery D 5-6 times throughout the day. One reason you are doing better is because you discovered and eliminated other triggers from the beginning, while I started only with gluten and dairy and then had to discover the others one by one. Also, had Entocort been available then, it may have helped to reduce my gut inflammation faster. Anyway, it can take up to 2 years or more for the gut to return to normal.
Of course, I recommend "wait and see" only as long as you are stable and gradually improving.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Everyone,
It sure helps me having this discussion. It seems clear to me that what ever is going on is complicated and I need some dedicated Doctors to help figure this out. I am sure there are some very fine doctors in my area...but they are all mixed in with the bad ones and I'm tired of trying to figure out who's who.
My GI has mentioned in the past that the two best places treating and studying MC is Texas Southwestern and Johns Hopkins. We were looking at their websites this weekend and Johns Hopkins seems to be set up to handle out of towners and also continuing to coordinate care with me at home. On their site about MC, they talk about how thyroid disease can complicate MC...so at least they suspect that hormones can play a role in this disease for some people. Hopefully the endocrine specialists can work with the gastroenterology people.
I was wondering if there are other major medical centers that I should look at before deciding on Johns Hopkins. Anyone have any suggestions or first hand experiences?
Thanks everyone.
Love, Cristi
It sure helps me having this discussion. It seems clear to me that what ever is going on is complicated and I need some dedicated Doctors to help figure this out. I am sure there are some very fine doctors in my area...but they are all mixed in with the bad ones and I'm tired of trying to figure out who's who.
My GI has mentioned in the past that the two best places treating and studying MC is Texas Southwestern and Johns Hopkins. We were looking at their websites this weekend and Johns Hopkins seems to be set up to handle out of towners and also continuing to coordinate care with me at home. On their site about MC, they talk about how thyroid disease can complicate MC...so at least they suspect that hormones can play a role in this disease for some people. Hopefully the endocrine specialists can work with the gastroenterology people.
I was wondering if there are other major medical centers that I should look at before deciding on Johns Hopkins. Anyone have any suggestions or first hand experiences?
Thanks everyone.
Love, Cristi
Hi again Cristi!
If you are looking for a tertiary center for a multidisciplinary evaluation, I would also ask this question of Dr. Fine. I don't know anything about Texas Southwestern, but I am quite familiar with Johns Hopkins. It is in my backyard -LOL- about 15 miles from my house.
Johns Hopkins is a wonderful institution and usually ranks as the number one hospital overall in the nation! In fact, both my GI doc and my internist are Hopkins-trained. But I am sorry to tell you that neither one had ever heard of the relationship between gluten or other food intolerances with regard to MC. (They both eagerly ask me to update them on these issues when I have appointments, and my GI doc , as a result, is now recommending dietary changes to her patients with MC). Both docs are in their late 30s/early40s, so maybe Hopkins is more recently teaching about the MC/gluten connection. But you would think these docs would have heard about it in their continuing ed. updates at the hospital if this were true.
Hopkins would be great for endocrinology, I would think, if you want to get a second opinion. I'm always in favor of 2nd opinions - several heads are better than one. But I wouldn't put too much hope in getting a true multidisciplinary evaluation ANYWHERE. Sorry to be so pessimistic, but in my experience the gurus in the tertiary centers are often even more specialized and narrow than their practicing colleagues. And sometimes have even BIGGER egos. YIKES!
I still think that what you need most is a good, open-minded primary care doc who can help pull everything together for you. Who will speak with each of your care providers and look at the big picture with you to see if further evaluations are needed, etc.
I sure hope I'm not raining too much on your parade, but I am speaking as a doc when I urge you not to have too many expectations for a multidisciplinary evaluation. And I will be the first one to clap and cheer when you tell me I'm wrong and that you have found such a resource. I will be overjoyed!
Love,
Polly
If you are looking for a tertiary center for a multidisciplinary evaluation, I would also ask this question of Dr. Fine. I don't know anything about Texas Southwestern, but I am quite familiar with Johns Hopkins. It is in my backyard -LOL- about 15 miles from my house.
Johns Hopkins is a wonderful institution and usually ranks as the number one hospital overall in the nation! In fact, both my GI doc and my internist are Hopkins-trained. But I am sorry to tell you that neither one had ever heard of the relationship between gluten or other food intolerances with regard to MC. (They both eagerly ask me to update them on these issues when I have appointments, and my GI doc , as a result, is now recommending dietary changes to her patients with MC). Both docs are in their late 30s/early40s, so maybe Hopkins is more recently teaching about the MC/gluten connection. But you would think these docs would have heard about it in their continuing ed. updates at the hospital if this were true.
Hopkins would be great for endocrinology, I would think, if you want to get a second opinion. I'm always in favor of 2nd opinions - several heads are better than one. But I wouldn't put too much hope in getting a true multidisciplinary evaluation ANYWHERE. Sorry to be so pessimistic, but in my experience the gurus in the tertiary centers are often even more specialized and narrow than their practicing colleagues. And sometimes have even BIGGER egos. YIKES!
I still think that what you need most is a good, open-minded primary care doc who can help pull everything together for you. Who will speak with each of your care providers and look at the big picture with you to see if further evaluations are needed, etc.
I sure hope I'm not raining too much on your parade, but I am speaking as a doc when I urge you not to have too many expectations for a multidisciplinary evaluation. And I will be the first one to clap and cheer when you tell me I'm wrong and that you have found such a resource. I will be overjoyed!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Thanks Polly,
You're not raining on my parade...it's better to keep my expectations realistic.
I guess I am not as concerned that they are not making the gluten/MC connection yet as I know there is one, as do all of us here, and I won't be persuaded to start eating it again. That said...I don't know that gluten is the entire picture...though it could be. But at this point I am more than willing to explore other things that may be involved. If diet accounts for 100%...then I'll get better eventually.
The reason I may have been too willing to go into the hysterectomy surgery in the first place was that I was so tired of trying to function on half a tank of gas. My doctors and I acted on a set of symptoms without ever getting at the cause. It sure feels like there is a big endocrine problem going on....maybe gluten is messing with that too. Like you said...getting a second opinion is a good idea.
I haven't heard back from Dr. Fine's nurse yet ....will wait to see where that goes. My parents and husband think it's time to find new medical opinions. We are gathering info on Johns Hopkins and the Mayo Clinic. At the same time I will try to find a good primary care doc.
Thanks so much for your help, Polly. You and everyone here have been very kind to me and I am truly touched.
Love, Cristi
You're not raining on my parade...it's better to keep my expectations realistic.
I guess I am not as concerned that they are not making the gluten/MC connection yet as I know there is one, as do all of us here, and I won't be persuaded to start eating it again. That said...I don't know that gluten is the entire picture...though it could be. But at this point I am more than willing to explore other things that may be involved. If diet accounts for 100%...then I'll get better eventually.
The reason I may have been too willing to go into the hysterectomy surgery in the first place was that I was so tired of trying to function on half a tank of gas. My doctors and I acted on a set of symptoms without ever getting at the cause. It sure feels like there is a big endocrine problem going on....maybe gluten is messing with that too. Like you said...getting a second opinion is a good idea.
I haven't heard back from Dr. Fine's nurse yet ....will wait to see where that goes. My parents and husband think it's time to find new medical opinions. We are gathering info on Johns Hopkins and the Mayo Clinic. At the same time I will try to find a good primary care doc.
Thanks so much for your help, Polly. You and everyone here have been very kind to me and I am truly touched.
Love, Cristi
Hey Cristi, I think that gluten/MC are connected. Here's one possible way that I've been thinking about.
Gluten (gliadin specfically) causes (even in normal folks) the tight junctions in the gut to open. This is proven. By the way there are a bunch of other ways that the tight junctions are opened, I mention a few in the other thread I started on the research I did. What's "wonderful" about some of these are that some are recent man made additions to our diet or treatments for symptoms (and not diseases).
Once these tight junctions open far enough proteins can make their way into the gut and we build antibodies for those proteins. Also proven.
Let's just say that we all had Small Intestinal Bacterial Overgrowth. Can't prove, but given that something like 84% of folks diagnosed with IBS had SIBO or at least tests pointed towards this and that 74% improved symptoms when treated for SIBO I wouldn't think this would be a stretch.
So, the good and bad bacteria (which is normally in the colon but in SIBO is in the small intestines) make it's way through the open tight junctions and we develop antibodies for said bacteria where before it was tollerated. This can be proven in that this is how pathogens are eliminated by the immune system.
Well, now all bets are off, the bacteria even in the colon are "attacked" and then we get all sorts of wonderful symptoms or even other diseases.
Mike
Gluten (gliadin specfically) causes (even in normal folks) the tight junctions in the gut to open. This is proven. By the way there are a bunch of other ways that the tight junctions are opened, I mention a few in the other thread I started on the research I did. What's "wonderful" about some of these are that some are recent man made additions to our diet or treatments for symptoms (and not diseases).
Once these tight junctions open far enough proteins can make their way into the gut and we build antibodies for those proteins. Also proven.
Let's just say that we all had Small Intestinal Bacterial Overgrowth. Can't prove, but given that something like 84% of folks diagnosed with IBS had SIBO or at least tests pointed towards this and that 74% improved symptoms when treated for SIBO I wouldn't think this would be a stretch.
So, the good and bad bacteria (which is normally in the colon but in SIBO is in the small intestines) make it's way through the open tight junctions and we develop antibodies for said bacteria where before it was tollerated. This can be proven in that this is how pathogens are eliminated by the immune system.
Well, now all bets are off, the bacteria even in the colon are "attacked" and then we get all sorts of wonderful symptoms or even other diseases.
Mike
Cristi,
I was wondering about the reason for your hysterectomy. Did you say that the menorrhagia (excessive bleeding) was due to too much iron? I don't think I've ever heard of that before.
Also, I am a great believer in intuition. If you feel that there is still a problem that has not been adequately identified, GO FOR IT. In this situation you know best. Plus, it doesn't sound as if you have had the benefit of compassionate, proactive docs that you could trust so far.
Love,
Polly
I was wondering about the reason for your hysterectomy. Did you say that the menorrhagia (excessive bleeding) was due to too much iron? I don't think I've ever heard of that before.
Also, I am a great believer in intuition. If you feel that there is still a problem that has not been adequately identified, GO FOR IT. In this situation you know best. Plus, it doesn't sound as if you have had the benefit of compassionate, proactive docs that you could trust so far.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Mike,
Hmmmmm. You're saying that when the immune system starts dropping bombs, it drops them everywhere, not just in the SI. Interesting viewpoint. I never looked at it that way, but it certainly explains why the body might attack "good" bacteria in the colon. IOW, the immune system isn't really corrupt, it's just not discriminating enough, sometimes.
Tex
Hmmmmm. You're saying that when the immune system starts dropping bombs, it drops them everywhere, not just in the SI. Interesting viewpoint. I never looked at it that way, but it certainly explains why the body might attack "good" bacteria in the colon. IOW, the immune system isn't really corrupt, it's just not discriminating enough, sometimes.
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.
Right it's not corrupt, and it shouldn't discriminate either. The only discrimination it "should" follow is for self, but there are reasons even why self should be attacked as well.tex wrote:Mike,
Hmmmmm. You're saying that when the immune system starts dropping bombs, it drops them everywhere, not just in the SI. Interesting viewpoint. I never looked at it that way, but it certainly explains why the body might attack "good" bacteria in the colon. IOW, the immune system isn't really corrupt, it's just not discriminating enough, sometimes.
Tex
And yes, once the antibodies are created in the SI they move throughout the entire body via the blood and lymphatic system. There is no separation, the original attack may be at the point of intrusion, but once the marker is set it can attack anywhere the pathogens are found.
Just like putting up a wanted sign for a criminal in other states. :)
Hi Polly,
When I started the iron infusions my periods got closer together and became even heavier. My doctor said that he could continue giving me the iron infusions but that it was like two steps forward, one step back. Since we had talked in the past about getting my ovaries out because of the ovarian cancer risk...he thought between the two things going on that a complete hysterectomy might be the right thing for me to do.
Anyone who is really close to me will tell you here is a woman with hormone issues. I have struggled with mood swings and various energy levels. I had been coping by keeping what I thought was a very clean diet and exercising to keep my moods in check.
A cause has never been found to explain any of my symptoms before MC...and now that I have MC...everything that I am experiencing is being dismissed as only MC.
My doctors here say that entocort is the biggest gun there is for MC and that it is effective 85% of the time. So, I must be the unfortunate 15% and we're sorry but you have to live with this and it won't get better. I am not ready to accept this yet. If I have to live this way then it will be easier to accept if I know they have made a reasonable attempt to figure out what is going on.
I am going to try to get an appointment now because for all I know it may take many months to even get an appointment.
Hi Mike,
I agree that gluten is what causes MC...I'm just not sure my D is completely caused by MC in my case.
Thanks again.
Love, Cristi
When I started the iron infusions my periods got closer together and became even heavier. My doctor said that he could continue giving me the iron infusions but that it was like two steps forward, one step back. Since we had talked in the past about getting my ovaries out because of the ovarian cancer risk...he thought between the two things going on that a complete hysterectomy might be the right thing for me to do.
Anyone who is really close to me will tell you here is a woman with hormone issues. I have struggled with mood swings and various energy levels. I had been coping by keeping what I thought was a very clean diet and exercising to keep my moods in check.
A cause has never been found to explain any of my symptoms before MC...and now that I have MC...everything that I am experiencing is being dismissed as only MC.
My doctors here say that entocort is the biggest gun there is for MC and that it is effective 85% of the time. So, I must be the unfortunate 15% and we're sorry but you have to live with this and it won't get better. I am not ready to accept this yet. If I have to live this way then it will be easier to accept if I know they have made a reasonable attempt to figure out what is going on.
I am going to try to get an appointment now because for all I know it may take many months to even get an appointment.
Hi Mike,
I agree that gluten is what causes MC...I'm just not sure my D is completely caused by MC in my case.
Thanks again.
Love, Cristi
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harvest_table
- Rockhopper Penguin
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- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Cristi, I admire your determination so much and I was so hopeful that Entocort would help you by now. Since you have other issues than MC that may be integrated into the big picture and if you do indeed fall into that 15% of MC'rs that this med does not help than you may be able to help your Doctors (if they are interested) as well as yourself and many others. Keep the faith- your an inspiration.cludwig wrote: My doctors here say that entocort is the biggest gun there is for MC and that it is effective 85% of the time. So, I must be the unfortunate 15% and we're sorry but you have to live with this and it won't get better. I am not ready to accept this yet. If I have to live this way then it will be easier to accept if I know they have made a reasonable attempt to figure out what is going on.
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/