Hi all!
I go for a physical with my familly dr this thursday morning and I was wondering if there is any special test or blood work I should have ordered specific to my MC.. etc.
I feel like i suffer from malabsorption? I have lost a lot of weight.. I have lost over 150lbs since feb of 2014. My BM are still mostly soft with a sporadic 4 on the bristol chart with the rest falling up higher on the chart.. I have one or two BM's each morning pretty much like clock work and then i rarely ever have to go the rest of the day. It really does take a lot of wiping and wet wipes to get cleanup done and that bothers me.. Normally before MC and with the diet im on now id barely even have to wipe lol.. I know tmi but thats the one thing that really bothers and scares me is the excessive wiping.
for the last almost 1.5 yrs. I've been 95% gluten free.. i try to be mostly dairy free but when i do have cheese and omlettes it doesn't seem to bother me and i actually get my better bowel movements after consuming things I should maybe avoid. My diet consist of meat and veggies, and my downfall of nuts everyday.. somedays I probably have 4 ounces or more of mixed nuts that include pecans, walnuts, brazil, macadamia, pumpkin, and pistachios. I also eat at least 3 smaller slices of bread daily that consist of golden flax seed, almond flour, 4 eggs, salt, and baking soda.
Thanks so much for any advice and suggestions to seek on thursday.. I try to do my homework but it does get a little overwhelming as I get so wrapped up in reading all the great information shared here and in the long run my ADHD AND horrible memory does me no justice and i'm back scratching my head.
Well enough rambling and I also have to get ready for work at 2pm until 11. Again thanks so much for any advice and i cant thank you all all enough and words can't express how much I greatly greatly appreciate all the support this family provides..
Take care all and have a wonderful day (hugs)
Steven
Dr Appointment July 9th
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Trigger2298
- Little Blue Penguin
- Posts: 32
- Joined: Mon Sep 22, 2014 8:37 pm
- Location: Milwaukee, WI.
Hi Steven,
Anytime we still have D (and malabsorption), it's always a good idea to keep track of our vitamin D level once or twice a year, and it's a good idea to check our vitamin B-12 about once each year (vitamin B-12 is normally not depleted as rapidly as vitamin D), because both are very important for overall health, and both can become deficient for IBD patients. We usually do much better if we keep both those numbers in the upper part of their normal range. At any rate, those are good items to test, if your doctor is willing, because they are important for MCers.
Your continuing D is almost surely due to the "95% gluten free" status. Even tiny trace amounts of gluten can cause our immune system to produce antibodies, so 5 % of normal amounts is a massive amount of gluten (as far as your immune system is concerned). The reason why you sometimes see better BMs after eating cheese may be because cheese can be constipating for many people (it was for me, also), so it offsets the opposite effects of gluten somewhat. The problem is that even though cheese may be constipating, the constipation is due to inflammation caused by the production of antibodies against the casein in the cheese, so despite reduced clinical symptoms, the casein in the diet just adds to the inflammation.
Of course without any EnteroLab stool test results to go by, we can only guess that you may be sensitive to these foods, based on the fact that most of us here are sensitive to them. It's possible that you might not be, but obviously something in your diet is preventing you from reaching remission, and one way to track those foods down is to avoid all possible risky foods by doing an elimination diet, and then after you are in remission you can carefully test foods back into our diet, one at a time.
Various nuts may or may not be a problem. Some of us can tolerate them, others cannot. For a long time, I couldn't tolerate any significant amounts of any nuts or nut butters, but now I can tolerate both, as long as I don't overdo it.
And yes, the cleanup job after a BM can be challenging while we are reacting. Much easier cleanup is another incentive for tightening down our diet until it is squeaky clean, so that our inflamed gut can finish healing.
Thanks, and I hope that you have an enjoyable day too, Steven.
Hugs,
Tex
Anytime we still have D (and malabsorption), it's always a good idea to keep track of our vitamin D level once or twice a year, and it's a good idea to check our vitamin B-12 about once each year (vitamin B-12 is normally not depleted as rapidly as vitamin D), because both are very important for overall health, and both can become deficient for IBD patients. We usually do much better if we keep both those numbers in the upper part of their normal range. At any rate, those are good items to test, if your doctor is willing, because they are important for MCers.
Your continuing D is almost surely due to the "95% gluten free" status. Even tiny trace amounts of gluten can cause our immune system to produce antibodies, so 5 % of normal amounts is a massive amount of gluten (as far as your immune system is concerned). The reason why you sometimes see better BMs after eating cheese may be because cheese can be constipating for many people (it was for me, also), so it offsets the opposite effects of gluten somewhat. The problem is that even though cheese may be constipating, the constipation is due to inflammation caused by the production of antibodies against the casein in the cheese, so despite reduced clinical symptoms, the casein in the diet just adds to the inflammation.
Of course without any EnteroLab stool test results to go by, we can only guess that you may be sensitive to these foods, based on the fact that most of us here are sensitive to them. It's possible that you might not be, but obviously something in your diet is preventing you from reaching remission, and one way to track those foods down is to avoid all possible risky foods by doing an elimination diet, and then after you are in remission you can carefully test foods back into our diet, one at a time.
Various nuts may or may not be a problem. Some of us can tolerate them, others cannot. For a long time, I couldn't tolerate any significant amounts of any nuts or nut butters, but now I can tolerate both, as long as I don't overdo it.
And yes, the cleanup job after a BM can be challenging while we are reacting. Much easier cleanup is another incentive for tightening down our diet until it is squeaky clean, so that our inflamed gut can finish healing.
Thanks, and I hope that you have an enjoyable day too, Steven.
Hugs,
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.
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Trigger2298
- Little Blue Penguin
- Posts: 32
- Joined: Mon Sep 22, 2014 8:37 pm
- Location: Milwaukee, WI.
thanks so much all for the feedback and help.. sorry i haven't got back sooner but life is totally nuts right now and just doesnt stop.. Just wanted to post some pics of my lab work and colonoscopy... i cant figure out how to post the pics correctly and its getting so late and have to be up for dr at 5am..
If there are any test ya'll can think that I should request that hasnt been mentioned or you think can be useful would be great.. is there any that are like entrolab that could asked for... I know a lot of those that try to be like entrolab and detecting celiac just aren't accurate i read.. I dunno lol.. I wanted to be more prepared but the last few days I haven't had two mins to sit down and prepare for tomorrow..
Thanks so much ya'll and i hope you's had a wonderful day and having a great night.! I can't think or keep my eyes open so I'll have to close for now. I'll keep you all updated how tomorrow goes.
If there are any test ya'll can think that I should request that hasnt been mentioned or you think can be useful would be great.. is there any that are like entrolab that could asked for... I know a lot of those that try to be like entrolab and detecting celiac just aren't accurate i read.. I dunno lol.. I wanted to be more prepared but the last few days I haven't had two mins to sit down and prepare for tomorrow..
Thanks so much ya'll and i hope you's had a wonderful day and having a great night.! I can't think or keep my eyes open so I'll have to close for now. I'll keep you all updated how tomorrow goes.
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Trigger2298
- Little Blue Penguin
- Posts: 32
- Joined: Mon Sep 22, 2014 8:37 pm
- Location: Milwaukee, WI.
Steven,
To edit your posts, just click on the little button in the upper right-hand corner of the post that says "edit". In the meantime, I'll edit that one for you.
Good luck tomorrow.
Tex
To edit your posts, just click on the little button in the upper right-hand corner of the post that says "edit". In the meantime, I'll edit that one for you.
Good luck tomorrow.
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.
Steven,
As Tex writes, there are a lot of malabsorption issuses with MC. Research shows that the small intestines is inflamed in over 50 % of us. In my own case I had aenemia and osteopenia. A DEXA scan providing bone status could be useful regarding risk of long term use of budesonide and the need for supplements.
When it comes to tests for food sensitivities, people here have been successful with Enterolab, but it seems like it's difficult to get these tests covered. Antibodies against gliadin (gluten) and casein (dairy) in blood can be relevant, although far less sensitive than the Enterolab tests. High titers of IgA against gliadin in blood keep me motivated for the GF diet despite no short term consequenses of gluten consumption. When it comes to dairy corn and peanuts, I get D in a few hours. The gluten thing seems to be a more long term issue for me. Celiac disease is quite frequent among us, so celiac tests should be done as well. To be able to trust antibody tests, I think you should ask for a test for IgA deficiency as well.
Good luck,
Tor
As Tex writes, there are a lot of malabsorption issuses with MC. Research shows that the small intestines is inflamed in over 50 % of us. In my own case I had aenemia and osteopenia. A DEXA scan providing bone status could be useful regarding risk of long term use of budesonide and the need for supplements.
When it comes to tests for food sensitivities, people here have been successful with Enterolab, but it seems like it's difficult to get these tests covered. Antibodies against gliadin (gluten) and casein (dairy) in blood can be relevant, although far less sensitive than the Enterolab tests. High titers of IgA against gliadin in blood keep me motivated for the GF diet despite no short term consequenses of gluten consumption. When it comes to dairy corn and peanuts, I get D in a few hours. The gluten thing seems to be a more long term issue for me. Celiac disease is quite frequent among us, so celiac tests should be done as well. To be able to trust antibody tests, I think you should ask for a test for IgA deficiency as well.
Good luck,
Tor
Life's hard and then you die
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Trigger2298
- Little Blue Penguin
- Posts: 32
- Joined: Mon Sep 22, 2014 8:37 pm
- Location: Milwaukee, WI.
thanks so much for the great info and ill also share with my dr! I also look forward to the entrolab testing when we can fit it in down the road but unfortunately that can't happen until after the new yr.. is there any test or test I should have done first by them going off the little info I have provided while on the board? just trying to figure how much we need to save up.. all those test that are offered is so overwhelming and confusing to us!
I could of swore i had a bunch of links to my lab work and colonoscopy pics in post 4? I'll repost them now if i can before shower. oh i wonder if the links don't work for anybody but me because you are not logged in to my cloud account..hmm
vitamin d below ! b12 is real high... almost 1800?? https://www.dropbox.com/home?preview=20 ... 201645.jpg
colonoscopy
Thank you so very much for the good luck wishes!
I could of swore i had a bunch of links to my lab work and colonoscopy pics in post 4? I'll repost them now if i can before shower. oh i wonder if the links don't work for anybody but me because you are not logged in to my cloud account..hmm
vitamin d below ! b12 is real high... almost 1800?? https://www.dropbox.com/home?preview=20 ... 201645.jpg
colonoscopy
Thank you so very much for the good luck wishes!
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Trigger2298
- Little Blue Penguin
- Posts: 32
- Joined: Mon Sep 22, 2014 8:37 pm
- Location: Milwaukee, WI.
just trying a different way to host pics.. dont have time to do any more though :( I used to use tinypic to host but i cant anymore for some reason.. cant figure a free easy one out.
http://s9.postimg.org/io7wc8yov/2015_07 ... [img][url][/url]![Image]()
http://s9.postimg.org/io7wc8yov/2015_07 ... [img][url][/url]
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Trigger2298
- Little Blue Penguin
- Posts: 32
- Joined: Mon Sep 22, 2014 8:37 pm
- Location: Milwaukee, WI.
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Trigger2298
- Little Blue Penguin
- Posts: 32
- Joined: Mon Sep 22, 2014 8:37 pm
- Location: Milwaukee, WI.
is there a process to go through to see if by a real long shot i could get my insurance to cover Enterolab stool test?
think ill try for any food sensitivities test i can get dr to order.. probably useless test from what i garner on here though... just trying to figure out any must have test or lab work out of the obvious ones theyll run. my dr will probably direct me to my GI dr for a lot of the MC stuff so that will give me a little more time before my next appointment there which is later this month so hopefully we can come up and have a plan for him
iga deficiency test.. and the horrible celiac blood work test that will just come back negative lol i should ask for it sounds like to?
all this MC and what comes with it is so overwhelming and so is life right now that every time I try and sit down to work on my health I just overload my horrendous memory and i get no where lol... maybe at the dr i should be starting with my ADD, brain, and anxiety troubles that have plagued me for, well forever, sigh. I'm just scared of all those test and meds they want to prescribe that ive just tried to deal with zero memory and etc.
anywho enough pity party rambling from me lol.. talk with ya's all later!
think ill try for any food sensitivities test i can get dr to order.. probably useless test from what i garner on here though... just trying to figure out any must have test or lab work out of the obvious ones theyll run. my dr will probably direct me to my GI dr for a lot of the MC stuff so that will give me a little more time before my next appointment there which is later this month so hopefully we can come up and have a plan for him
iga deficiency test.. and the horrible celiac blood work test that will just come back negative lol i should ask for it sounds like to?
all this MC and what comes with it is so overwhelming and so is life right now that every time I try and sit down to work on my health I just overload my horrendous memory and i get no where lol... maybe at the dr i should be starting with my ADD, brain, and anxiety troubles that have plagued me for, well forever, sigh. I'm just scared of all those test and meds they want to prescribe that ive just tried to deal with zero memory and etc.
anywho enough pity party rambling from me lol.. talk with ya's all later!
Steven,
Apparently you didn't read my previous post. I removed those links from your post. We don't have your Dropbox password, so there is no way that we can open those links. (And we would rather not have your Dropbox password, for security reasons.)
You can call EnteroLab or email them to ask for the insurance codes for the tests you are interested in. Then you can call your insurance to see if they cover those test codes.
Are you taking cyanocobalamin or methylcobalamin? Your high level of B-12 suggests that either you are taking a very high supplemental dose, or you are not able to adequately convert cyanocobalamin into the active form, methylcobalamin, and that's why the level is building up in your body. That level is not hazardous to your health, but if you are taking cyanocobalamin, you might be much better off taking methylcobalamin, which is already in a form where it can be utilized by the body without conversion.
If that's a recent vitamin D test result, your vitamin D level is critically low, and IMO that is your biggest single obstacle to good overall health at the moment. You need to get that 25HydroxyD level up over 30 ng/mL, and preferably up in the 40–50 ng/mL range ASAP to help heal your existing gut damage and to help prevent the development of additional AI diseases. Our immune system cannot function without an adequate level of vitamin D in the blood. Just as the brain runs on glucose, the immune system uses vitamin D as its fuel.
Tex
Apparently you didn't read my previous post. I removed those links from your post. We don't have your Dropbox password, so there is no way that we can open those links. (And we would rather not have your Dropbox password, for security reasons.)
Steven wrote:is there a process to go through to see if by a real long shot i could get my insurance to cover Enterolab stool test?
You can call EnteroLab or email them to ask for the insurance codes for the tests you are interested in. Then you can call your insurance to see if they cover those test codes.
A blood test for selective IgA deficiency is a good idea if you are planning to have any EnteroLab tests, or any celiac blood tests done. Both depend on the ability of your immune system to produce immunoglobulin A, in order to yield reliable results. If you have been following a GF diet for more than a month or so, the celiac blood tests will probably be negative, regardless of whether or not you are a celiac. Those tests have very poor sensitivity. The EnteroLab stool tests, by comparison, will reliably detect gluten sensitivity for at least a year, and in many cases, for at least 2 years after gluten has been withdrawn from the diet. However if foods other than gluten have been removed from the diet, antibody levels for them will fade away much faster, so that after a few months, the tests might not detect them reliably.Steven wrote:iga deficiency test.. and the horrible celiac blood work test that will just come back negative lol i should ask for it sounds like to?
Are you taking cyanocobalamin or methylcobalamin? Your high level of B-12 suggests that either you are taking a very high supplemental dose, or you are not able to adequately convert cyanocobalamin into the active form, methylcobalamin, and that's why the level is building up in your body. That level is not hazardous to your health, but if you are taking cyanocobalamin, you might be much better off taking methylcobalamin, which is already in a form where it can be utilized by the body without conversion.
If that's a recent vitamin D test result, your vitamin D level is critically low, and IMO that is your biggest single obstacle to good overall health at the moment. You need to get that 25HydroxyD level up over 30 ng/mL, and preferably up in the 40–50 ng/mL range ASAP to help heal your existing gut damage and to help prevent the development of additional AI diseases. Our immune system cannot function without an adequate level of vitamin D in the blood. Just as the brain runs on glucose, the immune system uses vitamin D as its fuel.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
With your Vit D3 level so low, I would be totally avoiding high inflammation ingredients like Gluten, Dairy and Nuts.... as high inflammation in the gut will continue to deplete the Vit D3.
and agree with Tex about the Vit B12, there are deficiencies in your cells that mean you are not using Vit B12 properly. The low Vit D3 would be one reason, and deficiency in other key nutrients such as B1, B2 B5 Vit C, Vit E, Biotin, folate, omega 3 fatty acids, selenenium affect the synergistic process of B12
Antiobiotics also reduce the gut synthesis of B12
we get that it can be full on /overwhelming at first. we have all been there. Stress is not our friend so the best thing you can do is stop, breathe. spend some time reading, read the posts aimed at new people, read the posts in the success story area.
take it one day at a time. you cannot fix everything in a week. Along with the diet and the medical side, there is the mental and emotional side to this, acceptance, grief, embracing change, the impact on family, work, lifestyle etc. again this takes time.
one lady, Erica who has recently gone through the 'newbie' journey has included her thread as a postie at the top, if you read through the pages of this discussion you will see how to get from the starting point to good stage of healing - physically, mentally and emotionally
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173
it has meal ideas, reading and guided meditation recommendations to help you on your MC journey...
hope this helps
take care
and agree with Tex about the Vit B12, there are deficiencies in your cells that mean you are not using Vit B12 properly. The low Vit D3 would be one reason, and deficiency in other key nutrients such as B1, B2 B5 Vit C, Vit E, Biotin, folate, omega 3 fatty acids, selenenium affect the synergistic process of B12
Antiobiotics also reduce the gut synthesis of B12
these are all related to Magnesium deficiency, and common type of symptoms for MC'ers.starting with my ADD, brain, and anxiety troubles that have plagued me for, well forever, sigh.
we get that it can be full on /overwhelming at first. we have all been there. Stress is not our friend so the best thing you can do is stop, breathe. spend some time reading, read the posts aimed at new people, read the posts in the success story area.
take it one day at a time. you cannot fix everything in a week. Along with the diet and the medical side, there is the mental and emotional side to this, acceptance, grief, embracing change, the impact on family, work, lifestyle etc. again this takes time.
one lady, Erica who has recently gone through the 'newbie' journey has included her thread as a postie at the top, if you read through the pages of this discussion you will see how to get from the starting point to good stage of healing - physically, mentally and emotionally
http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173
it has meal ideas, reading and guided meditation recommendations to help you on your MC journey...
hope this helps
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Trigger2298
- Little Blue Penguin
- Posts: 32
- Joined: Mon Sep 22, 2014 8:37 pm
- Location: Milwaukee, WI.
Hi Gabes! I love reading anything you have to say and have in the past have really gone through a lot of your previous archive post and garnered so much priceless information.. I thank you from the bottom of my heart.
Sorry I haven't been able to post as our power has been out going on 5 days and finally came back on (yay!) an hr a go so i jumped on to do a quick respond/ty before i leave for work in a few mins. I could still read the forum from my phone but typing on my old flip phone was not an option.
Tomorrow I go to GI dr for a consultation... Not really sure what to talk about.. They just seem to want to prescribe meds and really that's all for me.. they believe meds is a cure. but I know its just a band aide to use until we heal the gut with diet changes. I think I have done a pretty could job of managing MC by diet but I just can't quite get over the hump of loosing the loose BM's... and malabsorbption issues I think i have as its a real pain to wipe afte bm's..
Im not sure if you guys can read my colonoscopy pictures/results.. i know it might be a problem as they're small and tough and cant zoom.. But if you can read the results I'd love your opinion..
I know the GI and his assisant? that called with results weren't 100% sure it was microscopic colitis, but I don't know how they could say that without certainty... I was in denial at the time so I kind of just went to playing dr google and thankfully I reached the potty people and just started reading.. it was overwhelming especially along with my horrible ADD/ADHD it was so hard to absorb the amount of info i was taking in and it just overwhelmed me trememdously and I'd forget 95% of what i read at the end of the hrs of binge reading.. The main theme i took away from all your guys help was diet.. and eliminating the big enemys most of us seem to suffer from and that was enough to keep things in relative check and living without MC running me.
If there is anything you think I should bring up to the GI after looking over my pathology report - It would be so greatly appreciated.. I just hate tomorrows visit to be a waste of time (with gi's its like talking to a brick wall anyways it seems)
Sorry I haven't been able to post as our power has been out going on 5 days and finally came back on (yay!) an hr a go so i jumped on to do a quick respond/ty before i leave for work in a few mins. I could still read the forum from my phone but typing on my old flip phone was not an option.
Tomorrow I go to GI dr for a consultation... Not really sure what to talk about.. They just seem to want to prescribe meds and really that's all for me.. they believe meds is a cure. but I know its just a band aide to use until we heal the gut with diet changes. I think I have done a pretty could job of managing MC by diet but I just can't quite get over the hump of loosing the loose BM's... and malabsorbption issues I think i have as its a real pain to wipe afte bm's..
Im not sure if you guys can read my colonoscopy pictures/results.. i know it might be a problem as they're small and tough and cant zoom.. But if you can read the results I'd love your opinion..
I know the GI and his assisant? that called with results weren't 100% sure it was microscopic colitis, but I don't know how they could say that without certainty... I was in denial at the time so I kind of just went to playing dr google and thankfully I reached the potty people and just started reading.. it was overwhelming especially along with my horrible ADD/ADHD it was so hard to absorb the amount of info i was taking in and it just overwhelmed me trememdously and I'd forget 95% of what i read at the end of the hrs of binge reading.. The main theme i took away from all your guys help was diet.. and eliminating the big enemys most of us seem to suffer from and that was enough to keep things in relative check and living without MC running me.
If there is anything you think I should bring up to the GI after looking over my pathology report - It would be so greatly appreciated.. I just hate tomorrows visit to be a waste of time (with gi's its like talking to a brick wall anyways it seems)
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Trigger2298
- Little Blue Penguin
- Posts: 32
- Joined: Mon Sep 22, 2014 8:37 pm
- Location: Milwaukee, WI.
![http://s9.postimg.org/io7wc8yov/2015_07 ... [img][url]](http://s9.postimg.org/io7wc8yov/2015_07_08_20_07_38.jpg%5Burl%5D%0A%5B/img%5Dhttp://s17.postimg.org/6ad55yejj/2015_07_08_20_06_56_1.jpg%5Bimg%5D%5Burl%5D%0A%0Ahttp://s9.postimg.org/io7wc8yov/2015_07_08_20_07_38.jpg%5Bimg%5D%5Burl%5D){kind=link}