Hi all,
My GI (the one who did the endoscopy) is going to be on vacation for the next two weeks. Fortunately the biopsy results came back before he left! Here's what they say:
FINAL DIAGNOSIS:
I. Duodenum, biopsy:
-- No specific pathologic changes, features of sprue are not
identified.
II. Gastric antrum, biopsy:
-- Mild chronic gastritis, no microorganisms morphologically
compatible with H. pylori are identified on routine or
Giemsa staining.
III. Gastric body, biopsy;
-- No specific pathologic changes, no microorganisms
morphologically compatible with H. pylori are identified.
IV. Distal esophagus, biopsy:
-- Squamous mucosa with no specific pathologic changes, no
glandular epithelium is present.
V. Proximal esophagus, biopsy:
-- Squamous mucosa with no specific pathologic changes, no
population of intraepithelial eosinophils is identified.
VI. Esophagus, "pink islands" biopsy:
-- Fragments of gastric-type glandular mucosa admixed with
fragments of unremarkable squamous mucosa with
mild submucosal vascular dilatation, features of Barrett' s
esophagus are NOT identified.
So I guess this is good news. I don't fully understand the "pink islands" issue other than it's not Barrett's so not precancerous. I gather the hiatal hernia is the reason for my stomach pain. Not sure what to think about GERD given the hiatal hernia and the "pink islands"; it doesn't look like Kaiser is going to charge me extra for my visit to Dr. Lewey so I'm thinking I will try to send my results to him and then go back to see him (after my Enterolabs results also come in).
I'm starting to wonder, though - with all the negative test results, is it somehow all in my head? Maybe I'm depriving myself for nothing. I worry that my Enterolab results will come back negative too, and my dh will think I'm crazy. I can't deny the positive MC diagnosis, or the constant WD/soft serve problems, but progress is so slow that I often even find myself wondering whether I'm doing the right thing being so restrictive. Maybe it's just stress. Somebody please tell me I'm not losing my marbles here, and the Enterolab results will show a) genetic links and b) sensitivity to at least some of the "big 4"! (Can you tell the doubts are starting to set in?)
Thanks,
Deanna
Biopsy Results Back
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Deanna in CO
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Deanna,
I think that it must be natural that once a person starts doing well and feeling better (relative to where they started) that you may have that moment of questioning yourself. No doubt, you are doing better because of the sacrifices and changes you've made. This is definitely NOT in your head. It is good news that your tests are showing other things are okay-- it's less for you to focus on. I think you are in a sort of limbo, waiting for the test results, and once you have your test results you'll have a sense of direction. I felt that way too.
My Enterolab results were not hugely elevated but they were still elevated and they were accurate. I already knew i couldn't tolerate the foods they said, but I didn't not know I could tolerate what they said I could--like GF oats. I am now enjoying some homemade granola with the GF oats. So I was able to add something to my diet that I didn't anticipate. I hope you get to do the same.
I feel like I'm rambling here... I mainly just wanted to assure you that the sacrifices are leading to your success and as you said you can't doubt the diagnosis. Sometimes it's hard to believe your own success.
Carol
I think that it must be natural that once a person starts doing well and feeling better (relative to where they started) that you may have that moment of questioning yourself. No doubt, you are doing better because of the sacrifices and changes you've made. This is definitely NOT in your head. It is good news that your tests are showing other things are okay-- it's less for you to focus on. I think you are in a sort of limbo, waiting for the test results, and once you have your test results you'll have a sense of direction. I felt that way too.
My Enterolab results were not hugely elevated but they were still elevated and they were accurate. I already knew i couldn't tolerate the foods they said, but I didn't not know I could tolerate what they said I could--like GF oats. I am now enjoying some homemade granola with the GF oats. So I was able to add something to my diet that I didn't anticipate. I hope you get to do the same.
I feel like I'm rambling here... I mainly just wanted to assure you that the sacrifices are leading to your success and as you said you can't doubt the diagnosis. Sometimes it's hard to believe your own success.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Carol,
Thank you so much for the encouragement. I sometimes find myself wondering whether I'm really seeing progress or not, when Norman seems so far away still. I couldn't tell you when he visited last. I do know that when the Dr came in to talk to me before the biopsy and told me that in December 2010 when I'd seen him in his office, I had said I was having WD once or twice a day, I was stunned, because by Thanksgiving 2011 I was having it 10-12 times a day. Now I'm down to 4-5 times a day (yesterday it was actually only 3x), and it's soft-serve as often as WD if not more often. So I guess that's progress. But after 6 months of GF and mostly DF, and 3-4 months of fully GF/DF/EF/SF, as well as lots of other stuff (well, you know how that is), it seems like if this was going to work, it should have already. (I know all the "right" answers to all this, of course, but the doubts keep invading, kwim?)
Anyway, thanks for the support. I really appreciate it.
Deanna
Thank you so much for the encouragement. I sometimes find myself wondering whether I'm really seeing progress or not, when Norman seems so far away still. I couldn't tell you when he visited last. I do know that when the Dr came in to talk to me before the biopsy and told me that in December 2010 when I'd seen him in his office, I had said I was having WD once or twice a day, I was stunned, because by Thanksgiving 2011 I was having it 10-12 times a day. Now I'm down to 4-5 times a day (yesterday it was actually only 3x), and it's soft-serve as often as WD if not more often. So I guess that's progress. But after 6 months of GF and mostly DF, and 3-4 months of fully GF/DF/EF/SF, as well as lots of other stuff (well, you know how that is), it seems like if this was going to work, it should have already. (I know all the "right" answers to all this, of course, but the doubts keep invading, kwim?)
Anyway, thanks for the support. I really appreciate it.
Deanna
Deanna, I do know how it is. I'd just like to feel good on a consistent, dependable basis. My MRT test kit arrived yesterday so I'll get my blood drawn and shipped on Monday. I'm hoping that I'll have new information to help me move forward too. Being stalled in the process is too frustrating to stay here for long.
take care,
Carol
take care,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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Deanna,
It can be frustrating, especially since it is impossible to know for certain that these dietary changes will work. Still, all the positive experiences of the people in this group are pretty convincing, and the ability of people to stick with the changes over long periods of time is inspiring. I would certainly prefer a quick fix and when it doesn't come it can be hard to keep the faith. One thing that helps me is to think about what in statistics is called type 1 and type 2 errors. Which is worse, to say something is true when it's really false or to say something is false when its really true? In this case saying that the diet doesn't work, that it is false, when it really will work, carries a far greater risk (continued bad health) then saying the diet works when it really doesn't (deprived of some foods but no sicker). In other words, sticking with the diet has no real downside health wise even if it doesn't help while not sticking to the diet when it does work leads to worse health. I also try to re-frame this restrictive eating as a gift I give myself rather than a deprivation. I hope this make some sense.
Jean
It can be frustrating, especially since it is impossible to know for certain that these dietary changes will work. Still, all the positive experiences of the people in this group are pretty convincing, and the ability of people to stick with the changes over long periods of time is inspiring. I would certainly prefer a quick fix and when it doesn't come it can be hard to keep the faith. One thing that helps me is to think about what in statistics is called type 1 and type 2 errors. Which is worse, to say something is true when it's really false or to say something is false when its really true? In this case saying that the diet doesn't work, that it is false, when it really will work, carries a far greater risk (continued bad health) then saying the diet works when it really doesn't (deprived of some foods but no sicker). In other words, sticking with the diet has no real downside health wise even if it doesn't help while not sticking to the diet when it does work leads to worse health. I also try to re-frame this restrictive eating as a gift I give myself rather than a deprivation. I hope this make some sense.
Jean
Deanna,
My enterolab test results were extremely elevated, and there were many of them. I have been doing this for months already. When I started I was having 20-30 WD in 24 hours, night and day. Then the D moved to soft serve, and then to C, which I have fought all my life. Every time I eat something (mostly inadvertently) that I shouldn't I get a soft serve and VERY soft serve bout, which can be up to 12 times a day, but not at night. However, I can usually go out of the house without fear of accidents. And that is improvement. Last week I even had 3 days of one pseudo-Norman each morning. Pseudo or not, it looked and felt good to me!
So there is improvement, and, although I am frequently scared, discouraged and so sick of this, I have to carry on with this diet, however restricting it is. (I can't go out with my son for Mother's Day brunch tomorrow
) It seems that the healing takes a LONG time, and everyone is different.
Prior to getting my enterolab results I was sure I would be sensitive to one or 2 foods. It never occurred to me that I would test sensitive to most foods. Only when I read what Tex's reaction when he saw my results did reality begin to seep in, and I was in a state of shock for days!
I had it in the opposite direction from you.
You have the most important components - WD (symptom) with a biopsy dx of MC. And that's what you have to deal with. If you are lucky enough to have few sensitivities you can go from there to developing the diet that suits your situation.
When your husband sees you improving slowly, but steadily, he will understand.
My enterolab test results were extremely elevated, and there were many of them. I have been doing this for months already. When I started I was having 20-30 WD in 24 hours, night and day. Then the D moved to soft serve, and then to C, which I have fought all my life. Every time I eat something (mostly inadvertently) that I shouldn't I get a soft serve and VERY soft serve bout, which can be up to 12 times a day, but not at night. However, I can usually go out of the house without fear of accidents. And that is improvement. Last week I even had 3 days of one pseudo-Norman each morning. Pseudo or not, it looked and felt good to me!
So there is improvement, and, although I am frequently scared, discouraged and so sick of this, I have to carry on with this diet, however restricting it is. (I can't go out with my son for Mother's Day brunch tomorrow
) It seems that the healing takes a LONG time, and everyone is different.Prior to getting my enterolab results I was sure I would be sensitive to one or 2 foods. It never occurred to me that I would test sensitive to most foods. Only when I read what Tex's reaction when he saw my results did reality begin to seep in, and I was in a state of shock for days!
I had it in the opposite direction from you.
You have the most important components - WD (symptom) with a biopsy dx of MC. And that's what you have to deal with. If you are lucky enough to have few sensitivities you can go from there to developing the diet that suits your situation.
When your husband sees you improving slowly, but steadily, he will understand.
Hi Deanna,
I saw your post awhile back and did not have time to respond as I was entertaining family and traveling. I don't like to post much about timetables of healing because since I've been on this board there have been at least 4-5 people that have healed really quickly. I was not one of them. I was in the "slow healer" category. I can tell you now that I'm doing really well. I have 1 bm per day (as long as I don't eat a tin of nuts.) I've been GF since Oct 1 2011, DF since Jan 1 2012, and SF since March 15-2012. I thought I was always SF and didn't realize how soy can be in tuna packets, salmon packets and even non stick spray and in my vitamin D capsules. Generally I've made advances if I look back over an 8 week period. It would be hard for me to see improvements over a period of several days. I think the whole disease has been extremely frustrating for the loved ones and coworkers in my life. No one likes to see you suffering. I got to consistent soft serve once a day around July 30. I went on Entocort around Sept 1 mostly from caving to pressures from family and employer. The Entocort helps but it was no magic bullet for me. I think for some of us there is a time component to healing. We live in such a fast paced society that the expectation is you take a drug and you are better in several weeks. I basically just wanted to encourage you to stay the course and that you are not losing your marbles. Brandy
I saw your post awhile back and did not have time to respond as I was entertaining family and traveling. I don't like to post much about timetables of healing because since I've been on this board there have been at least 4-5 people that have healed really quickly. I was not one of them. I was in the "slow healer" category. I can tell you now that I'm doing really well. I have 1 bm per day (as long as I don't eat a tin of nuts.) I've been GF since Oct 1 2011, DF since Jan 1 2012, and SF since March 15-2012. I thought I was always SF and didn't realize how soy can be in tuna packets, salmon packets and even non stick spray and in my vitamin D capsules. Generally I've made advances if I look back over an 8 week period. It would be hard for me to see improvements over a period of several days. I think the whole disease has been extremely frustrating for the loved ones and coworkers in my life. No one likes to see you suffering. I got to consistent soft serve once a day around July 30. I went on Entocort around Sept 1 mostly from caving to pressures from family and employer. The Entocort helps but it was no magic bullet for me. I think for some of us there is a time component to healing. We live in such a fast paced society that the expectation is you take a drug and you are better in several weeks. I basically just wanted to encourage you to stay the course and that you are not losing your marbles. Brandy
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Deanna in CO
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- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Thanks, Brandy,
I'm actually not far behind you. I went GF (along with most other preservatives and additives, and almost all sugar) right after Thanksgiving, DF and citrus-free right after Christmas, and SF/EF around the first of March. I also had to dump almonds and all almond products a few weeks ago as I discovered I had trouble with them. I did find the soy in all the products you mentioned when I went soy-free. I'm continuing to reduce the amount of raw veggies in my diet (have been down to bananas, applesauce and canned peaches for about a month) - fruits and veggies have been hard because I have so little left to eat and intellectually I feel like they should be healthy. I'm taking no medications and only carefully limited "everything-free" supplements.
Unfortunately I am not improving very well at all in spite of all the limitations. At least now I can tell when I'm bad - for several months I could not figure out how on earth I'd ever know if I was reacting to something because it was always WD. Now I can get suspicious of a particular item because at least some of the time I am some better (fewer episodes, less urgency and better consistency). I'm discouraged today, though, because yesterday I tried to eat super-carefully and today I am really not doing well. I find myself doubting whether all this is worth it, whether it's going to make any difference. But I don't see many other options, you know? It's not as if treating this with drugs alone is going to work.
So your words are well timed. I need the encouragement!
I'm actually not far behind you. I went GF (along with most other preservatives and additives, and almost all sugar) right after Thanksgiving, DF and citrus-free right after Christmas, and SF/EF around the first of March. I also had to dump almonds and all almond products a few weeks ago as I discovered I had trouble with them. I did find the soy in all the products you mentioned when I went soy-free. I'm continuing to reduce the amount of raw veggies in my diet (have been down to bananas, applesauce and canned peaches for about a month) - fruits and veggies have been hard because I have so little left to eat and intellectually I feel like they should be healthy. I'm taking no medications and only carefully limited "everything-free" supplements.
Unfortunately I am not improving very well at all in spite of all the limitations. At least now I can tell when I'm bad - for several months I could not figure out how on earth I'd ever know if I was reacting to something because it was always WD. Now I can get suspicious of a particular item because at least some of the time I am some better (fewer episodes, less urgency and better consistency). I'm discouraged today, though, because yesterday I tried to eat super-carefully and today I am really not doing well. I find myself doubting whether all this is worth it, whether it's going to make any difference. But I don't see many other options, you know? It's not as if treating this with drugs alone is going to work.
So your words are well timed. I need the encouragement!