Hello everyone,
Boy, this is scary...
1st I want to thank everyone (especially Tex-my Daddy was from Texas) for the information that I have gleaned on this forum.
Here's a quick rundown of my experience:
9/07 developed ezcema on palms of hands and soles of feet (DH?)
12/07 developed severe, explosive D 8-12 times/day
1/08 diagnosed w/ LC put on Pepto for the 8 weeks-didn't seem to help much...
Blood work done at this time-Hepatic panel, TTG-IgA/IgG, TSH & C-reactive protein all normal
6/08 put on Entocort 9mg/day (immediate relief after two days) for 2 months weaning 6mg/two weeks 3mg/1 week
Huge flare one month after weaning-put myself back on Entocort 6 mg/day-only because I didn't have many left over
11/25 back up to 9mg per GI orders
Began GF diet the day after Thanksgiving '08-thanks to everyone here!!
Saw GI 12/17/08 and told him about the diet (he actually rolled his eyes and told me that the diet was a bad idea and highly recommended not continuing although my ezcema had completely cleared for the 1st time since beginning...) I felt immediately better!! To make me "feel better" he sent me to the allergist who diagnosed allergy to wheat, beef & chocolate (not to mention fuzzy animals and grass) by skin prick. He also scheduled an upper GI endoscopy scheduled for this Friday. He told me I need to be back on gluten for two weeks prior to the test; I absolutely refuse but have yet to cancel the appointment. Is it going to tell me anything?
Blood work done at this time-Protein electros-all normal
Any advice would be greatly appreciated.
Once again, THANKS to EVERYONE!!!!
Another newbie
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Littlekicker,
Welcome to our internet family. You seem to be way ahead of your GI doctor, and I applaud you for not allowing him to pull you down to his knowledge level.
The fact that he expected you to be "cured", after a two-month treatment plan, (using Entocort), shows that he doesn't understand MC at all. Like the other IBDs, there is no cure for MC, so once we achieve remission, we have to follow a maintenance program of some type, in order to remain in remission. If he had prescribed a low rate of Entocort, (3mg per day, or every other day, rather than having you completely withdraw from it), you would probably have remained in remission.
If my math is correct, on Friday, (the day of the "upper" exam), you will have been on the diet for six weeks. He is looking for villous atrophy, which would indicate the only possible type of gluten-sensitive enteropathy, that he is aware of, namely, celiac disease. Upon finding no evidence of villous damage, he will proudly proclaim that you are not gluten-sensitive, so you are foolish to follow a GF diet. The fact of the matter is, though, we are just as gluten-sensitive as celiacs, and virtually all of us will not present with villous atrophy, nor will we test positive to the classic celiac serum tests. The only ones who will, are those who have both MC and celiac disease.
In six weeks time, following a gluten-free diet, a celiac's small intestinal villi will not have had sufficient time to recover from the accrued damage that gluten has caused. Healing will have started, certainly, but it will not be complete. Therefore, the exam will be valid, whether he realizes it or not. The chances of finding any evidence of villous damage, though, are pretty slim, if your TTG antibody results are normal. Also, even if your gut damage were to have healed during that six week period, two weeks of eating gluten, is not enough to enable you to present with a detectable level of villous atrophy. A gluten challenge that will yield reliable results, takes much longer than that, (like several months, for example). IOW, he doesn't understand celiac disease, either.
I apologize for being so blunt in my criticism, but I don't have much patience with GI docs who place their petty narrow-mindedness above their patients' welfare, and who try to punish their patients, for disregarding faulty medical advice. Demanding that you do a gluten challenge, after you have demonstrated that avoiding it relieves your symptoms, and after you have been diagnosed as being allergic to wheat, strikes me as being highly unethical. IMO, that type of behavior falls somewhere between being highly inconsiderate of a patient's well-being, and borderline medical malpractice.
Personally, I believe that you are on the best treatment plan that you possibly could be, with the GF diet, and if you stick with it, you will definitely get your life back. I sincerely hope that you'll be able to continue to resist your GI docs misguided efforts to derail your recovery program.
FWIW, that's my two cents worth.
Again, welcome to the board.
Tex (Wayne)
Welcome to our internet family. You seem to be way ahead of your GI doctor, and I applaud you for not allowing him to pull you down to his knowledge level.
The fact that he expected you to be "cured", after a two-month treatment plan, (using Entocort), shows that he doesn't understand MC at all. Like the other IBDs, there is no cure for MC, so once we achieve remission, we have to follow a maintenance program of some type, in order to remain in remission. If he had prescribed a low rate of Entocort, (3mg per day, or every other day, rather than having you completely withdraw from it), you would probably have remained in remission.This is the part that I am never able to understand, even though I see it so frequently. That's a typical GI doc reaction, to being told by a patient that the GF diet has been helpful. So why do they immediately try to talk the patient out of following the diet, if it has been helping? That reaction can only be explained as a "vanity response", and it certainly is not very becoming of a professional. It sounds more like something coming from the mouth of an adolescent, whose feelings have been hurt, because someone ignored his advice, and found a better way to go. Shame on doctors who put their pride above their patients' welfare.Littlekicker wrote:Saw GI 12/17/08 and told him about the diet (he actually rolled his eyes and told me that the diet was a bad idea and highly recommended not continuing although my ezcema had completely cleared for the 1st time since beginning...) I felt immediately better!!
If my math is correct, on Friday, (the day of the "upper" exam), you will have been on the diet for six weeks. He is looking for villous atrophy, which would indicate the only possible type of gluten-sensitive enteropathy, that he is aware of, namely, celiac disease. Upon finding no evidence of villous damage, he will proudly proclaim that you are not gluten-sensitive, so you are foolish to follow a GF diet. The fact of the matter is, though, we are just as gluten-sensitive as celiacs, and virtually all of us will not present with villous atrophy, nor will we test positive to the classic celiac serum tests. The only ones who will, are those who have both MC and celiac disease.
In six weeks time, following a gluten-free diet, a celiac's small intestinal villi will not have had sufficient time to recover from the accrued damage that gluten has caused. Healing will have started, certainly, but it will not be complete. Therefore, the exam will be valid, whether he realizes it or not. The chances of finding any evidence of villous damage, though, are pretty slim, if your TTG antibody results are normal. Also, even if your gut damage were to have healed during that six week period, two weeks of eating gluten, is not enough to enable you to present with a detectable level of villous atrophy. A gluten challenge that will yield reliable results, takes much longer than that, (like several months, for example). IOW, he doesn't understand celiac disease, either.
I apologize for being so blunt in my criticism, but I don't have much patience with GI docs who place their petty narrow-mindedness above their patients' welfare, and who try to punish their patients, for disregarding faulty medical advice. Demanding that you do a gluten challenge, after you have demonstrated that avoiding it relieves your symptoms, and after you have been diagnosed as being allergic to wheat, strikes me as being highly unethical. IMO, that type of behavior falls somewhere between being highly inconsiderate of a patient's well-being, and borderline medical malpractice.
Personally, I believe that you are on the best treatment plan that you possibly could be, with the GF diet, and if you stick with it, you will definitely get your life back. I sincerely hope that you'll be able to continue to resist your GI docs misguided efforts to derail your recovery program.
FWIW, that's my two cents worth.
Again, welcome to the board.Tex (Wayne)
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.
-
Littlekicker
- Posts: 20
- Joined: Tue Jan 06, 2009 7:18 pm
- Location: Ohio
THANKS, Tex!!
I will go ahead and cancel the appointment.
I am sooo far ahead of the game as I have been reviewing and researching your website several hours a day for 2-3 months.
I am so happy to be here and feel as if the end of the world is no longer looming!!!
I am looking foward to getting to know all of you!!
Thanks again and look fowarding to chatting soon!
I will go ahead and cancel the appointment.
I am sooo far ahead of the game as I have been reviewing and researching your website several hours a day for 2-3 months.
I am so happy to be here and feel as if the end of the world is no longer looming!!!
I am looking foward to getting to know all of you!!
Thanks again and look fowarding to chatting soon!
LOL,
Leslie
Leslie
Welcome Littlekicker! 
I'm disgusted, but not surprised, that your GI would roll his eyes when you told him that changing your diet helped your MC.
I agree with you, Tex. I love your comment:
What to do once the diet cat is out of the bag? Littlekicker, you're in the same situation that I am, only I hopefully have a longer supply of Entocort until I have to go begging for more. My GI also wants to do more testing if I continue to need Entocort. I'm hoping I can convince him that the testing is unnecessary and wouldn't change his treatment of my MC at all. If he refuses to prescribe the Entocort, and I still need it, I'll have to find another GI or ask my PCP for a prescription.
The best solution to this is to bypass the GI and the Entocort and achieve remission completely through diet. For those of us with numerous intolerances, however, it may take a long time.
Gloria
I'm disgusted, but not surprised, that your GI would roll his eyes when you told him that changing your diet helped your MC.
I agree with you, Tex. I love your comment:
The problem with dealing with ignorant GIs is that they hold us hostage to their unnecessary testing in order to get the Entocort. When they don't find any evidence of Celiac disease, they get the "Ah, ha, I told you so!" look in their eyes. I'm beginning to think that it may be better to not tell them that our diet has helped us, though we would lose some valuable teaching opportunities. Otherwise, they seem bent on proving that diet is not the solution, just to establish their superiority.I applaud you for not allowing him to pull you down to his knowledge level.
What to do once the diet cat is out of the bag? Littlekicker, you're in the same situation that I am, only I hopefully have a longer supply of Entocort until I have to go begging for more. My GI also wants to do more testing if I continue to need Entocort. I'm hoping I can convince him that the testing is unnecessary and wouldn't change his treatment of my MC at all. If he refuses to prescribe the Entocort, and I still need it, I'll have to find another GI or ask my PCP for a prescription.
The best solution to this is to bypass the GI and the Entocort and achieve remission completely through diet. For those of us with numerous intolerances, however, it may take a long time.
Gloria
You never know what you can do until you have to do it.
Leslie,
While I probably would do the same thing, if I were in your shoes, (because it's unlikely that anything remarkable would be found during that exam), it wasn't my intention to try to talk you out of that appointment on Friday, (thought it probably sounded that way) - I hope you realize that. We're all different, and we're all in different situations, so we have to make our own decisions in situations such as that, based on what we feel is best for us, individually, under the circumstances. Do what you feel most comfortable with, because it's your life, after all.
Also, please bear in mind, that I don't have any professional medical training, I'm just someone who kept searching for a solution, after my GI doc told me that there was nothing wrong with me, (I found uncontrollable diarrhea to be an unacceptable lifestyle, in the long run.
). Therefore, like everyone else here, (including members who are doctors or nurses themselves), all I/we can offer is our personal experiences, and our insight. At the moment, though, I truly believe that our cumulative experience, and our database of information, offers the best hope for developing a treatment plan that will allow the greatest number of MC patients to achieve remission, in the shortest amount of time, and then maintain that remission; because the medical profession as a whole, still appears to have a long way to go, before reliable treatment programs for this disease will be available on an "official" basis.
One of the main reasons why we have such an edge, is the fact that no one truly understands this disease, unless they have it, and we're able to exchange that information freely here, so that every new member doesn't have to "reinvent the wheel", and they can add more information to the database, as they achieve remission themselves. It's a win-win situation.
You're most welcome, and I hope that you can find every thing that you need here, to get your life back.
Tex
P S Gloria, thanks for the kind words about my comment.
While I probably would do the same thing, if I were in your shoes, (because it's unlikely that anything remarkable would be found during that exam), it wasn't my intention to try to talk you out of that appointment on Friday, (thought it probably sounded that way) - I hope you realize that. We're all different, and we're all in different situations, so we have to make our own decisions in situations such as that, based on what we feel is best for us, individually, under the circumstances. Do what you feel most comfortable with, because it's your life, after all.
Also, please bear in mind, that I don't have any professional medical training, I'm just someone who kept searching for a solution, after my GI doc told me that there was nothing wrong with me, (I found uncontrollable diarrhea to be an unacceptable lifestyle, in the long run.
). Therefore, like everyone else here, (including members who are doctors or nurses themselves), all I/we can offer is our personal experiences, and our insight. At the moment, though, I truly believe that our cumulative experience, and our database of information, offers the best hope for developing a treatment plan that will allow the greatest number of MC patients to achieve remission, in the shortest amount of time, and then maintain that remission; because the medical profession as a whole, still appears to have a long way to go, before reliable treatment programs for this disease will be available on an "official" basis.One of the main reasons why we have such an edge, is the fact that no one truly understands this disease, unless they have it, and we're able to exchange that information freely here, so that every new member doesn't have to "reinvent the wheel", and they can add more information to the database, as they achieve remission themselves. It's a win-win situation.
You're most welcome, and I hope that you can find every thing that you need here, to get your life back.
Tex
P S Gloria, thanks for the kind words about my comment.
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.
-
MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome to the board and sorry for why you are here.
Kudos to you for being able to take charge of your situation and it is the right way to deal with it. Yes they roll their eyes at us and seem to want to be God on the way to not treat us. They think they are but in fact they aren't. Had so much faith in my GI but my last appointment it all went down hill and from now on, I will handle it myself.
Tex is right in his IMO that they border on a thin edge of practice and malpractice.
Please stick around and hope to hear you are doing better and better.
Maggie
Kudos to you for being able to take charge of your situation and it is the right way to deal with it. Yes they roll their eyes at us and seem to want to be God on the way to not treat us. They think they are but in fact they aren't. Had so much faith in my GI but my last appointment it all went down hill and from now on, I will handle it myself.
Tex is right in his IMO that they border on a thin edge of practice and malpractice.
Please stick around and hope to hear you are doing better and better.
Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Leslie, so happy you posted and we are looking forward to getting to know you too!!
I am impressed that you have had improvements already and so happy you have because that certainly gives incentive to keep going.
I hope your GI Doc will continue to give you the Entocort since it will make your life easier for now. I wish you the best............
Shirley
I am impressed that you have had improvements already and so happy you have because that certainly gives incentive to keep going.
I hope your GI Doc will continue to give you the Entocort since it will make your life easier for now. I wish you the best............
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill
-
barbaranoela
- Emperor Penguin
- Posts: 5394
- Joined: Wed May 25, 2005 6:11 pm
- Location: New York
from another Buckeye now transplanted to the South.Glad you found us and that you are GF.
My skin prick tests were all negative but I know I am sensitive anyhow. I went GF as soon as I found Tex and the PP. EnteroLab confirmed it all.
I trust Tex more than any GI. I am seeing mine for the second time tomorrow. She did say that I could be her test patient for GF diet which I guess is a small miracle. I was too busy being angry with her for "poo pooing" EnteroLab etc. that I didn't realize what a good thing it was until I reported it here.
When I saw her the first time, I had started doing not so great after being symptom free by going GF. In fact, I had to eat prunes and drink prune juice to get my sample for EL! I did the other EL test and found soy to be the culprit.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
-
RUBYREDDOG
- Adélie Penguin
- Posts: 158
- Joined: Tue Jun 10, 2008 4:45 pm
- Location: Glendale, Ca.
Leslie, Welcome to our group. Your experience with your GI is very familiar to many of us here. Tex's evaluation of your situation, with respect to the state of treatments from most Gi's is the best I have ever read. I could almost see the blood shooting out of his eyes, while composing that masterpiece. I am going to frame it and put it on my wall. (Tex, you are amazing)
I applaud you for taking an active roll in finding a way to achieve remission from this disease. As you have noted, there is a lot of information at this site. I'm confident you will find the best information available for MC right here. Good luck!
Hotrod
I applaud you for taking an active roll in finding a way to achieve remission from this disease. As you have noted, there is a lot of information at this site. I'm confident you will find the best information available for MC right here. Good luck!
Hotrod
Welcome Littlekicker!
I too am a newbie here-diagnosed last Valentine's Day after an upper and lower endoscopy. The BRAT diet is really helping me more than anything. I was told to take Pepto which I have discontinued. Like you, I have been experiencing skin challenges-blisters and pimply looking things. I too am allergic to wheat. Also like you, the skin condition is improving since I started the BRAT.
If your insurance covers all or most of the test, if I were in your shoes I would take it.
I look forward to hearing from you.
Deb
I too am a newbie here-diagnosed last Valentine's Day after an upper and lower endoscopy. The BRAT diet is really helping me more than anything. I was told to take Pepto which I have discontinued. Like you, I have been experiencing skin challenges-blisters and pimply looking things. I too am allergic to wheat. Also like you, the skin condition is improving since I started the BRAT.
If your insurance covers all or most of the test, if I were in your shoes I would take it.
I look forward to hearing from you.
Deb
Deb in Atlanta
Happiness is a voyage, not a destination.
There is no better time to be happy than… NOW!
Live and enjoy the moment.
-Author unknown
Happiness is a voyage, not a destination.
There is no better time to be happy than… NOW!
Live and enjoy the moment.
-Author unknown
-
RUBYREDDOG
- Adélie Penguin
- Posts: 158
- Joined: Tue Jun 10, 2008 4:45 pm
- Location: Glendale, Ca.
-
Littlekicker
- Posts: 20
- Joined: Tue Jan 06, 2009 7:18 pm
- Location: Ohio
THANK YOU everyone for the "virtual" hugs and pats on the back. It is nice to finally be validated!!
I did just buy the Roben Ryberg "You won't believe it's gluten free" cookbook and am looking forward to actually eating something w/ a little flavor.
While out to dinner this evening my DH tried a bison burger which I tasted (yummy!). My question is with the allergy to beef will bison also have an adverse effective if it is grain fed?
Thanks again!!
I did just buy the Roben Ryberg "You won't believe it's gluten free" cookbook and am looking forward to actually eating something w/ a little flavor.
While out to dinner this evening my DH tried a bison burger which I tasted (yummy!). My question is with the allergy to beef will bison also have an adverse effective if it is grain fed?
Thanks again!!
LOL,
Leslie
Leslie
Interesting question, but I'm reasonably sure that no one will be able to predict whether or not you might be allergic to bison meat. Bison are obviously in the same family as beef cattle, but separated by many, many generations. Also, unlike cattle, they have had very little selective breeding. Because of that, the texture, and the composition of the meat is remarkably different from beef, and unlike beef, bison meat retains most of the original characteristics of the early ancestors of bison. However, that does not mean that the amino acid chains that comprise the protein in bison meat, do not contain replicates of segments of the same amino acid chains in beef, that trigger your allergy to beef. IOW, that will have to be determined by testing.Leslie wrote:My question is with the allergy to beef will bison also have an adverse effective if it is grain fed?
If you do turn out to be allergic to bison, it will not be because of the grain that they are fed. During the digestion process, the polymer chains that provide the elemental structure of grain protein, are first broken down into peptides, which are short segments of amino acids, and these peptides are then broken down further, into individual amino acids, and possibly a few very short peptide chains, comprising only a very few amino acids, each. The protein fractions of gluten to which we react, for example, (in wheat), are called gliadins, and they are composed of chains of thirty-something amino acids, of a unique arrangement. Therefore, if a cow eats wheat, these amino acid chains, known as gliadins, are broken down during digestion, into individual amino acids, and after being transported by the circulatory system, they are deposited in the cells, where they are reformulated into new amino acid chains, unique to beef protein, so that they are no longer "reactive" to anyone who is gluten sensitive, (because the long polymer chains in beef, will no longer contain the unique gliadin peptides).
As a side observation, the reason why we react to gluten, is because our digestive system is not capable of breaking down those relatively long amino acid chains known as gliadin, and our immune system subsequently identifies them as foreign invaders, thus initiating an all out assault against them, resulting in collateral damage to our intestines.
I hope I haven't just confused the issue.
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.