Hi Tex!
Where and when is your book coming out! I am so tired of explaining MC! I went to my Internist to have a physical a week ago. I told her that I was having breast tenderness, headaches, dizziness, cramping and was so tired lately all I wanted to do was sleep all day! She did my bloods (cbc, hormones, thyroid, etc). I went back today to get my results and to hopefully get to the bottom of what is going on now. Well I was shocked....the good news is there is nothing showing in my blood work, she said she was so happy to see that my blood test were the way they are! My hormone levels are if I were in my thirties, UGH, I guess I will still be getting my period! My thyroid levels were perfect! Even my vitamin D was above normal, yeppie! My cholesterol came down from 218 to 152! She said I was perfect well I doubt that! So that being said why do I still have the dizziness, headaches etc.? I asked if she thought that my symptoms where from the MC! Here is what she said (I almost fell off the table!) "I have NO idea what MC is so I cant answer your question!!!!! I sat there in shock! I asked if she even bothered to look at all the reports from my GI. Her answer was yes, but she still really didn't know what it was! UGH!! This is so frustrating! So needless to say I still have no clue as to why I still have these symptoms which by the way are getting worse. I told her about your book and she definitely will be getting a copy of it! I am seeing my GI tomorrow so we will see what he has to say! I can say that recently I started vomiting again and I am really not liking that! My husband and children took me out for my birthday at a 5 star restaurant. I had filet mignon and steamed vegetables! The bill was....are you ready $900.00 for 6 people! OUCH! I came home a threw up ALL night! So at this point I don't know what seems to be the problem, but this is definitely one of those times where I am cursing a lot again!!!!
So please let me know when your book is coming out.
Love
Robin
Tex Where the Book!!!!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Robin,
Yep, that's frustrating. Even if Tex's book was available, would she read it?? She clearly hasn't made much effort to read up on MC.
As for your lingering symptoms, my guess is you are still having some food sensitivities. Any chance of being able to do MRT?
Mary Beth
Yep, that's frustrating. Even if Tex's book was available, would she read it?? She clearly hasn't made much effort to read up on MC.
As for your lingering symptoms, my guess is you are still having some food sensitivities. Any chance of being able to do MRT?
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
Hi Robin,
Wow! I'm sorry to hear all the bad news - especially the news about vomiting up a hundred and fifty dollar meal.
If not, since your thyroid checked out fine, and I assume that your liver enzymes checked out OK, then unless you have a manganese deficiency, it just about has to be due to your inability to absorb bile fatty acids in the terminal ileum, for recycling. (I'm assuming that your white cell count is normal, also.)
Anyway, that suggests a severe malabsorption problem, at least in the terminal ileum. I haven't seen much research on that, but my theory is that it is somewhat common with the IBDs, (and celiac disease), and it can lead to a rapid lowering of one's cholesterol, since normally, about 90% of the bile salts are recycled. If it isn't reabsorbed, then the body almost surely has trouble producing enough bile for normal digestion, due to inadequate cholesterol supplies, and this tends to deplete cholesterol levels in general. And, of course, if that's the case, they yes, it is almost certainly due to your MC.
I'm not saying that low cholesterol causes those symptoms, you're having, but whatever is causing that drastic drop in your cholesterol level, (and the accompanying poor digestion), may well be causing the symptoms. IOW, this goes along with what Mary Beth mentioned.
I'm bearing down on the book, these days. The board has slowed down a bit, and my normal work has gone from slow to non-existent, so I've had a lot of time to work on it, lately. I'm working on chapter 14, with either one or two to go, and I've got most of one of one of those other chapters just about finished, already.
Love,
Tex
Wow! I'm sorry to hear all the bad news - especially the news about vomiting up a hundred and fifty dollar meal.
Hmmmmm. I'm beginning to wonder if it might have something to do with that drastic drop in cholesterol. Are you taking a statin?Robin wrote:So that being said why do I still have the dizziness, headaches etc.?
If not, since your thyroid checked out fine, and I assume that your liver enzymes checked out OK, then unless you have a manganese deficiency, it just about has to be due to your inability to absorb bile fatty acids in the terminal ileum, for recycling. (I'm assuming that your white cell count is normal, also.)
Anyway, that suggests a severe malabsorption problem, at least in the terminal ileum. I haven't seen much research on that, but my theory is that it is somewhat common with the IBDs, (and celiac disease), and it can lead to a rapid lowering of one's cholesterol, since normally, about 90% of the bile salts are recycled. If it isn't reabsorbed, then the body almost surely has trouble producing enough bile for normal digestion, due to inadequate cholesterol supplies, and this tends to deplete cholesterol levels in general. And, of course, if that's the case, they yes, it is almost certainly due to your MC.
I'm not saying that low cholesterol causes those symptoms, you're having, but whatever is causing that drastic drop in your cholesterol level, (and the accompanying poor digestion), may well be causing the symptoms. IOW, this goes along with what Mary Beth mentioned.
I'm bearing down on the book, these days. The board has slowed down a bit, and my normal work has gone from slow to non-existent, so I've had a lot of time to work on it, lately. I'm working on chapter 14, with either one or two to go, and I've got most of one of one of those other chapters just about finished, already.
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 Marybeth and Tex,
Thanks for responding!
Marybeth... I would love to do the MRT , how do i get started?
Tex....I am not on any statins. But when I throw up lately i can tell you it has not been digested! I think thats what is bothering me the most, that it hasnt been digested and it always has to do with beef (which i am suppose to be able to eat)! It seems I am okay with chop meat. But anything like steak or stew meat comes right back up with in the first hour of eating! My Internist did say she thought i should ask my GI if he thought there was something wrong with either the sphincter muscle or if there could be a blockage! What r your thoughts?
I think the lowering of my cholesterol is because i dont eat eggs, cheese and not a lot of animal protein!? But then again i could be wrong!
Thanks so much for your help! This is so frustrating! Is there ever going to be normal again? I dont understand.... I get normal for a while (2-3 weeks) and then pow it comes back with a vengeance. I really wanted to go to the GI tomorrow and ask to come off of the Entocort, but I guess that wont be happening anytime soon!
Love Robin
Sorry if there are typing errors, i am on my iphone. I can hardley see the letters!
Thanks for responding!
Marybeth... I would love to do the MRT , how do i get started?
Tex....I am not on any statins. But when I throw up lately i can tell you it has not been digested! I think thats what is bothering me the most, that it hasnt been digested and it always has to do with beef (which i am suppose to be able to eat)! It seems I am okay with chop meat. But anything like steak or stew meat comes right back up with in the first hour of eating! My Internist did say she thought i should ask my GI if he thought there was something wrong with either the sphincter muscle or if there could be a blockage! What r your thoughts?
I think the lowering of my cholesterol is because i dont eat eggs, cheese and not a lot of animal protein!? But then again i could be wrong!
Thanks so much for your help! This is so frustrating! Is there ever going to be normal again? I dont understand.... I get normal for a while (2-3 weeks) and then pow it comes back with a vengeance. I really wanted to go to the GI tomorrow and ask to come off of the Entocort, but I guess that wont be happening anytime soon!
Love Robin
Sorry if there are typing errors, i am on my iphone. I can hardley see the letters!
Is that because you are in pain? I hope you are getting better Tex.my normal work has gone from slow to non-existent
Robin, I am sorry you are feeling horrible again. I am going to do the MRT since I am also not feeling great, and I have to know more about what foods are causing this.
My cholesterol dropped from 222 to 187, but I am SURE that's from eating only grass fed meats. I am eating red meat and fish, and occasionally rabbit. No veggies (except for potatoes) or fresh fruit. And yet my blood tests are also better than they have been.
Robin, you are eating grass fed, aren't you?
The literature says that grass fed meat gives one all the vitamins and minerals, and cholesterol levels fall.
Also, your hormone levels guarantee that you look a LOT younger than you are. Don't knock it.
Talking about docs - my PCP is positively hostile to me since MC (which she doesn't understand either), and my drastic reduction in all meds.
My GI - I wrote to him about the GERD and the pain on swallowing. I asked him about getting a diagnosis so that it could be watched. He answered giving me the Johns Hopkins statistics on Barrett's (10%) and those on the development of esophageal cancer (.5%). Told me that the directive is to do one upper endoscopy at 50. If it is negative, no need to repeat.
Hello? Even if there are symptoms you don't retest? I am symptomatic! Very much so!
The disease is NOT diagnosed so no one is watching to see that it doesn't get worse and develop into cancer?
Isn't that ridiculous? I told him I am NOT a hypochondriac and don't go in for gratuitous whining about pain for the fun of it.
Let's see what he answers.
Robin,
The body uses 3 enzymes to digest protein - pepsin, chymotrypsin, and trypsin. The only one that's available in the stomach is pepsin, which is created out of pepsinogen. Pepsinogen is released by what are called chief cells in the stomach, and it's activated by hydrochloric acid, (gastric acid). The hydrochloric acid, in turn, is released form parietal cells in the lining of the stomach. Without the acid, pepsin cannot be produced from the pepsinogen.
Therefore, the most obvious possible glitches would be either a failure to release pepsinogen, or a failure of the parietal cells to release acid. Either defect would prevent the availability of pepsin, which would corrupt the normal protein-digesting routine, and could lead to nausea, and vomiting, as the meat spoiled, instead of being digested.
Chymotrypsin and trypsin are produced in the pancreas, so they are not introduced into the chyme until it passes into the second part of the duodenum, (past the sphincter of Oddi). Therefore, it's unlikely that a problem with either chymotrypsin or trypsin production would cause vomiting, since they are present only below the pyloric sphincter. Of course, a blockage in that area, or downstream, could cause nausea and vomiting.
Low stomach acid is a much more common problem than most doctors realize, since we tend to produce less gastric acid as we get older, and the symptoms of low acid are very similar to the symptoms of excess acid, (IOW, low acidity is the primary cause of acid reflux, contrary to what most doctors incorrectly assume as a default diagnosis anytime a patient comes to them complaining of reflux - they automatically assume the problem to be excess acid).
Adding to the confusion is the fact that many of us with MC have either occasional or chronic gastroparesis, which can also lead to nausea/vomiting. However, with gastroparesis, you should notice that you tend to fill up too soon when eating, often after taking only a few bites, and you feel full way too long, (in some cases, always). With gastroparesis, digestion in the stomach should proceed normally - the chyme just can't empty out through the pyloric sphincter.
So, my strictly unprofessional guess is that you probably have a problem either with the release of pepsinogen, or low stomach acid, or a downstream blockage of some type.
I don't know how long it's been since your last cholesterol test, but it would normally take a long time to bring down the cholesterol level by that amount, with only diet changes - that's a drastic reduction. Incidentally, contrary to what most doctors think, research shows that cholesterol levels in that range significantly raise the risks of adverse health events.
Love,
Tex
The body uses 3 enzymes to digest protein - pepsin, chymotrypsin, and trypsin. The only one that's available in the stomach is pepsin, which is created out of pepsinogen. Pepsinogen is released by what are called chief cells in the stomach, and it's activated by hydrochloric acid, (gastric acid). The hydrochloric acid, in turn, is released form parietal cells in the lining of the stomach. Without the acid, pepsin cannot be produced from the pepsinogen.
Therefore, the most obvious possible glitches would be either a failure to release pepsinogen, or a failure of the parietal cells to release acid. Either defect would prevent the availability of pepsin, which would corrupt the normal protein-digesting routine, and could lead to nausea, and vomiting, as the meat spoiled, instead of being digested.
Chymotrypsin and trypsin are produced in the pancreas, so they are not introduced into the chyme until it passes into the second part of the duodenum, (past the sphincter of Oddi). Therefore, it's unlikely that a problem with either chymotrypsin or trypsin production would cause vomiting, since they are present only below the pyloric sphincter. Of course, a blockage in that area, or downstream, could cause nausea and vomiting.
Low stomach acid is a much more common problem than most doctors realize, since we tend to produce less gastric acid as we get older, and the symptoms of low acid are very similar to the symptoms of excess acid, (IOW, low acidity is the primary cause of acid reflux, contrary to what most doctors incorrectly assume as a default diagnosis anytime a patient comes to them complaining of reflux - they automatically assume the problem to be excess acid).
Adding to the confusion is the fact that many of us with MC have either occasional or chronic gastroparesis, which can also lead to nausea/vomiting. However, with gastroparesis, you should notice that you tend to fill up too soon when eating, often after taking only a few bites, and you feel full way too long, (in some cases, always). With gastroparesis, digestion in the stomach should proceed normally - the chyme just can't empty out through the pyloric sphincter.
So, my strictly unprofessional guess is that you probably have a problem either with the release of pepsinogen, or low stomach acid, or a downstream blockage of some type.
I don't know how long it's been since your last cholesterol test, but it would normally take a long time to bring down the cholesterol level by that amount, with only diet changes - that's a drastic reduction. Incidentally, contrary to what most doctors think, research shows that cholesterol levels in that range significantly raise the risks of adverse health events.
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.
Lesley wrote:Is that because you are in pain? I hope you are getting better Tex.
No, it's because of the drought, (and the general economic environment doesn't help any, either).
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 Robin,
So sorry you're having a rough time again - MC can be just maddening!!! It sure sounds like you're reacting to beef, and I agree with Mary Beth, it's probably a good idea for you to do MRT. Mary Beth will probably come along and give you advise, as it's best to go through a dietitian when ordering the test (it actually comes out cheaper). She can probably refer you to one in your area, as she has a good network. In case she doesn't see your question, you may want to PM her.
Lots of luck to you - hope you get better soon.
Love,
Kari
So sorry you're having a rough time again - MC can be just maddening!!! It sure sounds like you're reacting to beef, and I agree with Mary Beth, it's probably a good idea for you to do MRT. Mary Beth will probably come along and give you advise, as it's best to go through a dietitian when ordering the test (it actually comes out cheaper). She can probably refer you to one in your area, as she has a good network. In case she doesn't see your question, you may want to PM her.
Lots of luck to you - hope you get better soon.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Robin,
I hope you can get to the bottom of this, but your Internist doesn't sound like she's going to help you. It's very frustrating to go to a doctor and find that they won't even try to figure out what could be wrong.
Your symptoms sound like you are pregnant.
Gloria
I hope you can get to the bottom of this, but your Internist doesn't sound like she's going to help you. It's very frustrating to go to a doctor and find that they won't even try to figure out what could be wrong.
Your symptoms sound like you are pregnant.
Gloria
You never know what you can do until you have to do it.
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
Gloria, I was going to say the same thing. However, I would think a pregnancy test would have been part of the blood work.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
OMG! Gloria and Marliss you guys are too funny! If I am pregnant at 54 then someone better take me out back and shoot me!! All joking aside my Gastro asked me that today too! I wanted to kill him! But I still get my period regularly so no I am not pregnant!
Kari....Mary Beth has already PM me! God Bless her!
Tex my darling doctor ( I wish)! Well I did so much cursing in my Gastro office today I am surprised you didn't here me in Texas! Now he wants me to have another endoscopy and colonoscopy together! He wants to take more Bx. In all honesty he did say the same thing you did, he is leaning more towards the pyloric sphincter problem! Why didn't he test for this last year!! Its not like I haven't had an endoscopy (6 in the last 2 years) or a colonoscopy (10 in the last 3 years)! I am done after these test, DONE!!!! I will go the holistic route. I am not going threw this anymore and then still being sick! I also wanted to know why after changing my diet and eating extremely healthy I cant loose weight! I even showed him my journal of everything that goes in my mouth. My stomach looks like I am 7 months pregnant!!! He had no answer for me! UGH! I HATE DOCTORS!!!! I HATE THEM!!!!! AS for the cholesterol it was done 18 months ago! But even today my Gastro said it was lower from his blood work from 7 months ago! I just don't get it and I probably never will! But you go to a doctor you tell him/her what problems your having and they should test you and give you a Dx. I have been dealing with for past 7 years and the last 3 were really serious! Is that they don't care or really dent know! Because if they don't know then they should change there profession to something they do know like garbage men!! There is nothing wrong about be a garbage man, at least they know what hell they are doing!!!
I think I got everything off my chest! I am going to try and have a glass of white wine and seltzer! I might get sick but who cares anymore, everything makes me ill!
I really love you guys!!! I really don't know what I would do with out you!
Love
Robin
Kari....Mary Beth has already PM me! God Bless her!
Tex my darling doctor ( I wish)! Well I did so much cursing in my Gastro office today I am surprised you didn't here me in Texas! Now he wants me to have another endoscopy and colonoscopy together! He wants to take more Bx. In all honesty he did say the same thing you did, he is leaning more towards the pyloric sphincter problem! Why didn't he test for this last year!! Its not like I haven't had an endoscopy (6 in the last 2 years) or a colonoscopy (10 in the last 3 years)! I am done after these test, DONE!!!! I will go the holistic route. I am not going threw this anymore and then still being sick! I also wanted to know why after changing my diet and eating extremely healthy I cant loose weight! I even showed him my journal of everything that goes in my mouth. My stomach looks like I am 7 months pregnant!!! He had no answer for me! UGH! I HATE DOCTORS!!!! I HATE THEM!!!!! AS for the cholesterol it was done 18 months ago! But even today my Gastro said it was lower from his blood work from 7 months ago! I just don't get it and I probably never will! But you go to a doctor you tell him/her what problems your having and they should test you and give you a Dx. I have been dealing with for past 7 years and the last 3 were really serious! Is that they don't care or really dent know! Because if they don't know then they should change there profession to something they do know like garbage men!! There is nothing wrong about be a garbage man, at least they know what hell they are doing!!!
I think I got everything off my chest! I am going to try and have a glass of white wine and seltzer! I might get sick but who cares anymore, everything makes me ill!
I really love you guys!!! I really don't know what I would do with out you!
Love
Robin
Hi Robin,
I don't think we've "met" since you joined the board, so a belated welcome! I wanted to jump in on this post as you mentioned a possible redo for your colonoscopy and endoscopy. (Ugh, sorry!) Given all your symptoms (I went back and looked at all your previous posts) and the manner in which they wax and wane, I strongly suggest you ask your GI doc to biopsy your tissue for mast cells, assuming you are scoped again. (Apologies if this has already been done and I somehow missed that in a post.)
As others know I am the "poster child" for advocating that everyone (w/ GI symptoms) have their gut tissue biopsied for mast cells during a colonoscopy. This is how I discovered the source of my GI symptoms (D, C, HORRIBLE bloating, cramping, nausea, espohagitis,...) and got on the road to better GI health. Most GI docs do not even know about the role of mast cells in GI disease, so needless to say many patients with mastocytic enterocolitis (too many mast cells in your gut, which then cause severe GI symptoms) go undetected.
I certainly don't know if MCs could be part of the problem you're having, but why not ask for the biopsy if they are in there poking around anyway? The biopsy requires special handling and staining, which is critical to an accurate analysis of the tissue. I post the article below each time I bring this up as it goes over all the ins and outs of MCs and GI disease, including the special stain for biopsies. My GI doc co-authored the article as he is a big believer that MCs are very underdiagnosed in GI disease. He's also glad to consult with other GI docs on this issue.
http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed
Just wanted to mention this to you as some of your symptoms seemed so reminiscent of mine a few years ago. If this is to be your last scope for some time, ask them to look for excess mast cells. I had never even heard of mast cells prior to my colonoscopy, but they were the key to my GI (and systemic) issues as it turned out. Just a thought I wanted to share.
Hope you are feeling better soon!!!
Julie
I don't think we've "met" since you joined the board, so a belated welcome! I wanted to jump in on this post as you mentioned a possible redo for your colonoscopy and endoscopy. (Ugh, sorry!) Given all your symptoms (I went back and looked at all your previous posts) and the manner in which they wax and wane, I strongly suggest you ask your GI doc to biopsy your tissue for mast cells, assuming you are scoped again. (Apologies if this has already been done and I somehow missed that in a post.)
As others know I am the "poster child" for advocating that everyone (w/ GI symptoms) have their gut tissue biopsied for mast cells during a colonoscopy. This is how I discovered the source of my GI symptoms (D, C, HORRIBLE bloating, cramping, nausea, espohagitis,...) and got on the road to better GI health. Most GI docs do not even know about the role of mast cells in GI disease, so needless to say many patients with mastocytic enterocolitis (too many mast cells in your gut, which then cause severe GI symptoms) go undetected.
I certainly don't know if MCs could be part of the problem you're having, but why not ask for the biopsy if they are in there poking around anyway? The biopsy requires special handling and staining, which is critical to an accurate analysis of the tissue. I post the article below each time I bring this up as it goes over all the ins and outs of MCs and GI disease, including the special stain for biopsies. My GI doc co-authored the article as he is a big believer that MCs are very underdiagnosed in GI disease. He's also glad to consult with other GI docs on this issue.
http://www.ncbi.nlm.nih.gov/pmc/article ... ool=pubmed
Just wanted to mention this to you as some of your symptoms seemed so reminiscent of mine a few years ago. If this is to be your last scope for some time, ask them to look for excess mast cells. I had never even heard of mast cells prior to my colonoscopy, but they were the key to my GI (and systemic) issues as it turned out. Just a thought I wanted to share.
Hope you are feeling better soon!!!
Julie
most emphatically.Tex, I am sorry about the drought and the economic climate. I hope things work out OK for you. The stress must also be wearing on you. I hope you can relax enough not to let it make you ill again! Please look after yourself.
I trust YOUR guess way more than I would trust any of the doctors who all the members of this board despise so much! So far you are always right.my strictly unprofessional guess