Andi,
So sorry you've had such a horrible time with your doctors. Like everyone else on this board, I agree you clearly have celiac. Unfortunately, a blood test won't help much if you've been off gluten for very long - the blood tests will only be positive for a few weeks once you go gluten-free (and it's MUCH too dangerous for you to go back on gluten just to see if you get a positive test result - like others here I strongly recommend you never touch gluten again). The blood tests also only show positive results if you have significant intestinal damage (which you may well have, but you can still have significant celiac disease and not have enough damage to give a positive result).
Enterolab's tests will show positive results for many months after you go gluten-free, so you'll have a much better indication of your gluten sensitivity. I did my Enterolab tests a couple of months ago - I checked for the "big four" that many who have MC react to (gluten, dairy, egg, and soy) - and I also did the genetic test, which in my case said I had no celiac genes but 2 copies of a gene that predisposes to gluten sensitivity. It would be good for you to do at least those - $369. In your case I think we'd all be very surprised if you didn't show up with celiac genes. The tests will also let you know whether some of your symptoms might be caused or made worse by dairy, soy, and egg, like most of us with MC.
I'm so glad removing gluten has helped you so much. Please be aware that the damage gluten causes can be severe and long-lasting, and while you may feel better for a while after removing gluten, it will likely take you a year or two to really heal to the point where you begin to feel "normal" again. This is especially true in your case, since you've had untreated celiac disease for so long. Be patient and stick with it - you will continue to improve, and one day you too will really feel you have "gotten your life back."
Deanna
Newbie and Need Help!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
HI Andi,
Like everyone else, I am very sorry to hear the tough time you've been having.
I'm going to go way out on a limb here and suggest that with the numerous issues you are looking at you may want to consider going to a larger medical center that practices with a team approach like the Mayo Clinic. I have had a couple of friends go there for completely different issues and both have come back talking about how organized they are, how the appointments are all set for them with various specialties, who meet as a team after each one has seen you, and will meet with you as a team.
My one friend has had 2 tricky back surgeries there and is also seeing a rheumatologist and pain specialist in addition to her surgery team. The other friend just had his first trip there. He had wacky stuff going on-- his blood pressure would shoot up, he had abdominal pain, he had a huge cyst on his kidney that his previous docs didn't think could be a problem, and his heart would race bringing on chest pains. Previously his medical care was 'pieced together'-- seeing a cardiologist, then a renal specialist, etc. So everyone was looking at pieces of his illness but no one looking at the whole picture. He put his information in online, made the trip from SE Kansas and was in awe. His first comment was that he couldn't believe how organized they were. He ended up with effective treatments and now has a plan of action for continued improvement because his health problems were connected. Treating them in isolation wasn't going to work. His sister-who is a nurse- called me and said "you need to get up there" because she was so impressed.
I'm sure somewhere we can find someone who hated the Mayo Clinic but I think the approach as merit and I know there are other medical centers that do this kind of 'teaming'. With your extensive family medical history, your current health struggles, and the floundering that seems to be surrounding you now, I'd say it's time to move on. IF your current docs are that incompetent, no amount of demanding on your part is going to make them competent. You need to seek help elsewhere, IMO.
You may need a medical help to get you stabilized, then the help here will get you to recovery and remission.
Glad you found us--
Carol
Like everyone else, I am very sorry to hear the tough time you've been having.
I'm going to go way out on a limb here and suggest that with the numerous issues you are looking at you may want to consider going to a larger medical center that practices with a team approach like the Mayo Clinic. I have had a couple of friends go there for completely different issues and both have come back talking about how organized they are, how the appointments are all set for them with various specialties, who meet as a team after each one has seen you, and will meet with you as a team.
My one friend has had 2 tricky back surgeries there and is also seeing a rheumatologist and pain specialist in addition to her surgery team. The other friend just had his first trip there. He had wacky stuff going on-- his blood pressure would shoot up, he had abdominal pain, he had a huge cyst on his kidney that his previous docs didn't think could be a problem, and his heart would race bringing on chest pains. Previously his medical care was 'pieced together'-- seeing a cardiologist, then a renal specialist, etc. So everyone was looking at pieces of his illness but no one looking at the whole picture. He put his information in online, made the trip from SE Kansas and was in awe. His first comment was that he couldn't believe how organized they were. He ended up with effective treatments and now has a plan of action for continued improvement because his health problems were connected. Treating them in isolation wasn't going to work. His sister-who is a nurse- called me and said "you need to get up there" because she was so impressed.
I'm sure somewhere we can find someone who hated the Mayo Clinic but I think the approach as merit and I know there are other medical centers that do this kind of 'teaming'. With your extensive family medical history, your current health struggles, and the floundering that seems to be surrounding you now, I'd say it's time to move on. IF your current docs are that incompetent, no amount of demanding on your part is going to make them competent. You need to seek help elsewhere, IMO.
You may need a medical help to get you stabilized, then the help here will get you to recovery and remission.
Glad you found us--
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
FWIW, 
That type of team effort is far, far superior to the isolated approach used by most specialists, where no one cares about any issues outside their own little field of expertise. The reality is that precious few health issues are isolated situations -- virtually every issue is somehow connected with all the other issues that show up in other body systems. Coordination is vital to successful healing, and the conventional approach leaves coordination to chance -- everyone assumes that's the PCP's job, but the PCP can't be expected to do it all -- it needs to be a joint effort.
I have a hunch that we are seeing the future of medicine in the team approach used at the Mayo. Frankly, IMO, the medical community doesn't really have a choice. If specialists don't start coordinating their opinions and treatments with input from other specialists (similar to what the Mayo Clinic is doing with that approach), more and more patients are likely to defect to "alternative treatment" docs, because many of them are becoming weary of being subjected to conflicting treatments or prescriptions, due to a lack of organization in their treatment plans.
I noticed that when I had my last surgery, the group referred to themselves as a surgical team, and they did indeed function as a team. They were all present in my ICU room prepping me for the surgery (including the anesthesiologist, whom I recognized from a previous surgery done 5 years earlier). Even the surgeon and his stand-in were there helping and discussing their plan. Not only did they have a plan "A" (open me up and try to find the bleed and stop it), but they also had a plan "B" (a colectomy). They ended up using plan "B", as it turned out. I think surgical teams have been around for quite a few years, but apparently the approach is beginning to gain traction in other treatment programs. That has to be a very good thing.
Tex
That type of team effort is far, far superior to the isolated approach used by most specialists, where no one cares about any issues outside their own little field of expertise. The reality is that precious few health issues are isolated situations -- virtually every issue is somehow connected with all the other issues that show up in other body systems. Coordination is vital to successful healing, and the conventional approach leaves coordination to chance -- everyone assumes that's the PCP's job, but the PCP can't be expected to do it all -- it needs to be a joint effort.
I have a hunch that we are seeing the future of medicine in the team approach used at the Mayo. Frankly, IMO, the medical community doesn't really have a choice. If specialists don't start coordinating their opinions and treatments with input from other specialists (similar to what the Mayo Clinic is doing with that approach), more and more patients are likely to defect to "alternative treatment" docs, because many of them are becoming weary of being subjected to conflicting treatments or prescriptions, due to a lack of organization in their treatment plans.
I noticed that when I had my last surgery, the group referred to themselves as a surgical team, and they did indeed function as a team. They were all present in my ICU room prepping me for the surgery (including the anesthesiologist, whom I recognized from a previous surgery done 5 years earlier). Even the surgeon and his stand-in were there helping and discussing their plan. Not only did they have a plan "A" (open me up and try to find the bleed and stop it), but they also had a plan "B" (a colectomy). They ended up using plan "B", as it turned out. I think surgical teams have been around for quite a few years, but apparently the approach is beginning to gain traction in other treatment programs. That has to be a very good thing.
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.
Thanks for weighing in Tex. From what I am hearing here in the midwest, Univ of Kansas Med Center and St. Luke's Health Care Systems, both in Kansas City, appear to have teams established and are moving in that direction, which is good news for those of us who are likely to access them as our 'big system' of specialists. I'm sure Mayo has it down to a science because they've been doing it the longest but I agree. Everyone is more effective when teaming takes place. I think for complex cases it would be the only way to go.
Carol
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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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Hi, Andi, and welcome to the forum!
So sorry to hear about the horrific time (life?!) you've had! You must have one of the worst stories I've heard, and there are plenty of awful ones here. I totally agree that a GF lifestyle (or even a GF/SF/DF etc. etc. lifestyle) is not nearly as hard as being sick all the time! People always have the same reaction when they find out what I can't eat--they feel sorry for me. Even my family will say they're sorry I can't eat something they're having--Poor Mommie! But I tell them I'm fine with it. No food is worth being as sick as I was.
It takes time to figure all this out, but it sounds like you're already on the right track. I am of the opinion that if a doctor won't listen to you, you should fire him (or her). This is one time when it really is all about YOU! Good luck and keep us posted on your progress!
So sorry to hear about the horrific time (life?!) you've had! You must have one of the worst stories I've heard, and there are plenty of awful ones here. I totally agree that a GF lifestyle (or even a GF/SF/DF etc. etc. lifestyle) is not nearly as hard as being sick all the time! People always have the same reaction when they find out what I can't eat--they feel sorry for me. Even my family will say they're sorry I can't eat something they're having--Poor Mommie! But I tell them I'm fine with it. No food is worth being as sick as I was.
It takes time to figure all this out, but it sounds like you're already on the right track. I am of the opinion that if a doctor won't listen to you, you should fire him (or her). This is one time when it really is all about YOU! Good luck and keep us posted on your progress!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Hi Checking in
Thanks everyone...I made it through the surgery. I'm so full of anxiety right now I can barely function. Between that and I don't know if it's fog brain or still from the anesthesia on Monday.
In a nutshell, I reached out to the patient advocate at the hospital before surgery. She saw the swelling and said she would speak to Dr and says it might be scar tissue.
Then during admitting the lady says okay we need a urine test. As we are walking I ask her why we need a urine test? She says for pregnancy. FML PEOPLE!! I said Honey, I assure you I am not pregnant, I had a hystorectomy 10 yrs ago!! JEEZ!!
Woke up from surgery and was told I also have an ulcer. Was given Omperazole. I have an appt with the GI on the 28th. They tell me if I have a rash to call them. I point to the new rash on my arm? Oh that's okay...my DH about hurt that lady.
Since then I am barely functioning. So, I called my GP's office today and spoke to his nurse. Told her I need someone to talk to me, I want someone to look at my history and no one has taken blood ect- told her my whole story about being hurt during the first surgery and she can hear that I am totally stressed and full of anxiety. She told me she was going to talk to GP Dr and call me back. She calls me back and says he doesn't want to see me he wants the GI doc to treat this(70 mile trip!). THE LADY WHO WONT LISTEN TO ME AND TOLD ME TO CALM DOWN!! So the nice nurse tells me she is going to call this GI's office and they will get back to me. NO ONE HAS CALLED.
I am sick and stressed and depressed and just crying and alone.
Oh and to top it off- my computer crashed last night...everything is broken.
Thanks for listening, I know you all understand. xxoo ~Andi
In a nutshell, I reached out to the patient advocate at the hospital before surgery. She saw the swelling and said she would speak to Dr and says it might be scar tissue.
Then during admitting the lady says okay we need a urine test. As we are walking I ask her why we need a urine test? She says for pregnancy. FML PEOPLE!! I said Honey, I assure you I am not pregnant, I had a hystorectomy 10 yrs ago!! JEEZ!!
Woke up from surgery and was told I also have an ulcer. Was given Omperazole. I have an appt with the GI on the 28th. They tell me if I have a rash to call them. I point to the new rash on my arm? Oh that's okay...my DH about hurt that lady.
Since then I am barely functioning. So, I called my GP's office today and spoke to his nurse. Told her I need someone to talk to me, I want someone to look at my history and no one has taken blood ect- told her my whole story about being hurt during the first surgery and she can hear that I am totally stressed and full of anxiety. She told me she was going to talk to GP Dr and call me back. She calls me back and says he doesn't want to see me he wants the GI doc to treat this(70 mile trip!). THE LADY WHO WONT LISTEN TO ME AND TOLD ME TO CALM DOWN!! So the nice nurse tells me she is going to call this GI's office and they will get back to me. NO ONE HAS CALLED.
I am sick and stressed and depressed and just crying and alone.
Oh and to top it off- my computer crashed last night...everything is broken.
Thanks for listening, I know you all understand. xxoo ~Andi
Andi,
If you don't get a lot of responses..... it may be because we're speechless. At least I am. I think you did the right thing enlisting the help of the patient advocate. That really was a smart thing to do-- they can be objective when we are sick and not able to think clearly. On one hand I can see why the GP says "I want the GI doc to follow up on this issue" especially given the problems you had after the colonoscopy. But what I don't get is why no one will run a set of routine blood tests. It seems to me to be a good way to get a significant amount of information without being invasive. Both my GP and my GI docs ran blood tests first thing, plus stool tests as well. I thought that was fairly routine.
.
You are right... barely functioning is nothing but depressing. It seems especially cruel that antidepressants aggravate our microscopic colitis, because at times I can see where they would be helpful. I am truly sorry that you are going through this. There are many members who can thoroughly identify with your experiences. You definitely aren't alone... but I know that feeling of loneliness sneaks in and covers us in our roughest moments. Just keep reading, asking, talking and keep digging. Consider coming up with an alternative plan if your current docs won't come through for you. Where can you go next? What does your husband and your closest friends feel should be the next step? I've had a back up plan all along and it has helped me to feel less desperate.
Keep in touch,
Carol
If you don't get a lot of responses..... it may be because we're speechless. At least I am. I think you did the right thing enlisting the help of the patient advocate. That really was a smart thing to do-- they can be objective when we are sick and not able to think clearly. On one hand I can see why the GP says "I want the GI doc to follow up on this issue" especially given the problems you had after the colonoscopy. But what I don't get is why no one will run a set of routine blood tests. It seems to me to be a good way to get a significant amount of information without being invasive. Both my GP and my GI docs ran blood tests first thing, plus stool tests as well. I thought that was fairly routine.
.
You are right... barely functioning is nothing but depressing. It seems especially cruel that antidepressants aggravate our microscopic colitis, because at times I can see where they would be helpful. I am truly sorry that you are going through this. There are many members who can thoroughly identify with your experiences. You definitely aren't alone... but I know that feeling of loneliness sneaks in and covers us in our roughest moments. Just keep reading, asking, talking and keep digging. Consider coming up with an alternative plan if your current docs won't come through for you. Where can you go next? What does your husband and your closest friends feel should be the next step? I've had a back up plan all along and it has helped me to feel less desperate.
Keep in touch,
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
Andi,
Your whole situation is heartbreaking. It's a crime that anyone shoud go through this as you have. If no one has taken blood for a simple celiac screen at this point, that's almost grounds for malpractice!! When this series of visits ends, and you are happily on your way with your celiac dx in hand, you should minimally send some well-crafted letters to the hospital administrators, practice administrators, and doctors you dealt with. This needs to be a HUGE learning opportunity for them, if not for you, for the thousands of other patients that will come after you. I am constantly sickened to think how many patients are suffering out there with the wrong dx, the wrong meds, the wrong diet, etc.
I see an "integrative medicine doctor" now who is regular doctor who is also boarded in acupuncture and alternative methods. He looks at the whole person and your entire medical history before giving an opinion. It was the best thing I did for my health, besides firing my GI!
I hope you are feeling a little better today, and can soon spend your time cooking GF goodies instead of visiting far-away incompetent doctors!
No truer words have been spoken!!Also- the GI Dr Tells Me-grr- I am hesitant to label you Celiac because "it is a difficult lifestyle" OMFG!!!! ARE YOU KIDDING ME??!!
Like my body destroying itself isnt more difficult!!??
Your whole situation is heartbreaking. It's a crime that anyone shoud go through this as you have. If no one has taken blood for a simple celiac screen at this point, that's almost grounds for malpractice!! When this series of visits ends, and you are happily on your way with your celiac dx in hand, you should minimally send some well-crafted letters to the hospital administrators, practice administrators, and doctors you dealt with. This needs to be a HUGE learning opportunity for them, if not for you, for the thousands of other patients that will come after you. I am constantly sickened to think how many patients are suffering out there with the wrong dx, the wrong meds, the wrong diet, etc.
I see an "integrative medicine doctor" now who is regular doctor who is also boarded in acupuncture and alternative methods. He looks at the whole person and your entire medical history before giving an opinion. It was the best thing I did for my health, besides firing my GI!
I hope you are feeling a little better today, and can soon spend your time cooking GF goodies instead of visiting far-away incompetent doctors!
Thank You
Thanks for your support. No one from either Dr's office called me back. Still suffering from the anxiety as well as nausea and a terrible headache at the base of my skull- I think tension headache, I feel it in my jaw also. I can't eat and still having a hard time thinking.
I just don't know what to do, I have been sick for so long and I want to start getting better. The D has gone but I still feel shaky. I read somewhere that to heal you need to give up dairy for a while so I picked up some almond milk and made myself a small shake this morning and had some powerade also. I don't know what to eat- there's plenty of food but nothing sounds good. KWIM?
DH is trying to help. He wants to get me out of the house tonight, we're supposed to go for a drive through the woods to the lake- it's back on state land, love it back there. Hope it helps.
Zizzle, your integrated Dr is just what I need. How would I go about finding someone like that? I don't want drugs(my mom was a walking pharmacy)- I want to heal and I can tell that I am out of whack--it seems like every sense has been affected. That's what's bothering me so much about the blood tests. I want blood analysis done to see where I am deficient! Gawd youd think I'm asking them to hang moon or something.
Crazy that it's too much for them to find out if you're anemic and need iron ect. I don't get it!! :( Thank you all so much for your help. I'm so glad I found you. xxoo
I just don't know what to do, I have been sick for so long and I want to start getting better. The D has gone but I still feel shaky. I read somewhere that to heal you need to give up dairy for a while so I picked up some almond milk and made myself a small shake this morning and had some powerade also. I don't know what to eat- there's plenty of food but nothing sounds good. KWIM?
DH is trying to help. He wants to get me out of the house tonight, we're supposed to go for a drive through the woods to the lake- it's back on state land, love it back there. Hope it helps.
Zizzle, your integrated Dr is just what I need. How would I go about finding someone like that? I don't want drugs(my mom was a walking pharmacy)- I want to heal and I can tell that I am out of whack--it seems like every sense has been affected. That's what's bothering me so much about the blood tests. I want blood analysis done to see where I am deficient! Gawd youd think I'm asking them to hang moon or something.
Crazy that it's too much for them to find out if you're anemic and need iron ect. I don't get it!! :( Thank you all so much for your help. I'm so glad I found you. xxoo
Andi, many of us started with chicken soup- homemade so you can control the ingredients-- often with white rice and a very well cooked vegetable like carrots. No noodles unless they are gluten free. It's important to just start with something. Like you said, you need fuel to heal. And there were days it was chicken soup for at least 2 meals if not all 3. Potatoes too. Keep it bland, simple and low fiber to get you started.
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 in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Agreeing with Carol here, Andi. Chicken soup - just chicken boiled with carrots and maybe celery (some of us react to onions too especially when we're healing), then add white rice. Other kinds of simple meats - beef roast, lamb, lean pork, turkey breast - and well-cooked veggies (stick to simple ones like carrots, cauliflower, broccoli, green beans - avoid the harder-to-digest tomatoes and such). Most of us tolerate bananas and applesauce. Most of us can also handle baked or boiled potatoes (I usually avoid the peel - and if you're going to mash them, don't use dairy milk, sour cream, or cheese!).
Once you start to feel better, and once you've read more here so you know what the usual culprits are, then you can start adding things, one at a time. But for now, stick to very simple, basic foods that will help you heal. Most importantly, avoid all gluten, dairy, soy, and eggs for now.
Hope that helps!
Deanna
Once you start to feel better, and once you've read more here so you know what the usual culprits are, then you can start adding things, one at a time. But for now, stick to very simple, basic foods that will help you heal. Most importantly, avoid all gluten, dairy, soy, and eggs for now.
Hope that helps!
Deanna
Thanks! Gonna whip up some soup then.
Is chobani lemon yogurt okay? I know it's dairy...I thought I'd read somewhere where yogurt was okay-it's very plain and organic. I also have a yogurt maker- can make my own. Does anyone make kefir? I'd like to try the non-dairy version i think.
I was always able to pull myself out of the flares in the past by eating yogurt, rice and potatoes...yeah duh- no gluten there right? Applesauce and bananas--i have to force down. The last 2 weeks I have bought the bananas- they have ended up in the freezer. :P I will put them in my DH's smoothie but to drink them gives me heartburn. I also have applesauce- blech. Hate it=baby food.
Onions are bad too? :( We often have vidalias roasted in foil-i think I'm on my 3rd bag of vidalias this season....maybe that's a problem for the healing...hmmm. Could be could be.
I also have some baby carrots in the fridge. I was snacking on them with gf bolthaus ranch, when I was feeling better. I made some hummus today and was going to cook a chicken breast for dinner. I crave the proteins!! I crave eggs, nuts and meat. I also crave red meat often, probably needing the iron. Who knows- I'm just guessing at this point.
We've been eating a lot of mexican type stuff. I made corn avocado salsa we had gf sprouted corn tortillas- shrimp or steak and made tacos. Also did sort of rice bowls- meat and toppings over rice. Lots of chicken and rice or chicken and potato. It's hard- i gotta feed DH. I don't know how you all do it with families and not get glutened!
thankyou Deanna- THAT DOES HELP!! I just cannot think!! xoxo
Is chobani lemon yogurt okay? I know it's dairy...I thought I'd read somewhere where yogurt was okay-it's very plain and organic. I also have a yogurt maker- can make my own. Does anyone make kefir? I'd like to try the non-dairy version i think.
I was always able to pull myself out of the flares in the past by eating yogurt, rice and potatoes...yeah duh- no gluten there right? Applesauce and bananas--i have to force down. The last 2 weeks I have bought the bananas- they have ended up in the freezer. :P I will put them in my DH's smoothie but to drink them gives me heartburn. I also have applesauce- blech. Hate it=baby food.
Onions are bad too? :( We often have vidalias roasted in foil-i think I'm on my 3rd bag of vidalias this season....maybe that's a problem for the healing...hmmm. Could be could be.
I also have some baby carrots in the fridge. I was snacking on them with gf bolthaus ranch, when I was feeling better. I made some hummus today and was going to cook a chicken breast for dinner. I crave the proteins!! I crave eggs, nuts and meat. I also crave red meat often, probably needing the iron. Who knows- I'm just guessing at this point.
We've been eating a lot of mexican type stuff. I made corn avocado salsa we had gf sprouted corn tortillas- shrimp or steak and made tacos. Also did sort of rice bowls- meat and toppings over rice. Lots of chicken and rice or chicken and potato. It's hard- i gotta feed DH. I don't know how you all do it with families and not get glutened!
thankyou Deanna- THAT DOES HELP!! I just cannot think!! xoxo