Hello all! Just found this website and I think it's absolutely fantastic! I'm a newly diagnosed 29 yr old female that is currently active duty military. One of my many thousands of questions is this... will I be able to stay in the military? I'm trying to research this all... the doctors are unfortunately not as familiar with LC as they are with other issues, so I feel I'm getting blown off a lot of the time. I'm curious... has anyone here had any experience with LC and the military?
I've also been tested for Celiac... turns out I don't have that. But before I got the results, I went gluten free 'cause, well, I was willing to try almost anything to help! I hated the medication and was hoping for a more "natural" way to fix things. The GF diet has actually helped quite a bit and I'm no longer taking any LC-related meds except Aciphex (not sure if it's LC-related, but it sure keeps the heartburn away!) But now that I've found that I don't have Celiac, I'm wondering if the GF diet is a valid treatment for LC. From all the posts, it seems it is, but I'm just wanting I guess ammo for when I go tell my military doctors that, yes I do really need to be on this diet.
Also, another even more important question that I have... I'm also the mother of an absolutely wonderful and very busy 4 yr old boy. He does have D often, so should I see about getting him tested as well? Is LC genetic or contagious?
Thanks in advance for all of your help and advice!
Lymphocytic Colitis and the military
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi AJ'smom, and welcome!!
Unfortunately, the medical profession doesn't know a whole lot about this disease, so you'll need to be your own advocate...pretty soon you will realize YOU are the expert, and will probably be the one "educating" your doctor! That's just sort of the way it tends to work...
It seems like you have already looked into some of your treatment options if you have tried the gluten-free diet, as well as meds. Frankly, if you have found that diet changes help, that should be proof enough that it is effective treatment for *you*! The blood test for celiac is thought by some to be relatively innacurate (especially if you were not ingesting gluten at the time) - and only good at detecting full-blown celiac disease - which is also highly under-diagnosed. If you have gluten sensitivity lower on the spectrum, the blood test would indeed not show it. You might want to look at testing from Dr. Fine, if you feel you *need* documentation of gluten sensitivity for your work. www.finerhealth.com He does a more sensitive form of stool testing to check for food intolerances, but it is not wildely known about by the medical profession...If you have medical documentation, will the military be more accomodating??
The fact that your son had diarrhea makes me suspect gluten sensitivity. MC (either LC or CC forms) is not hereditary (that we know) BUT gluten sensitivity/celiac definitely has a hereditary/genetic component!
Check out Dr. Fine's site and stick around here - most of us have BTDT, and some one will probably have some good employer advice!
Take care,
Mary
Unfortunately, the medical profession doesn't know a whole lot about this disease, so you'll need to be your own advocate...pretty soon you will realize YOU are the expert, and will probably be the one "educating" your doctor! That's just sort of the way it tends to work...
It seems like you have already looked into some of your treatment options if you have tried the gluten-free diet, as well as meds. Frankly, if you have found that diet changes help, that should be proof enough that it is effective treatment for *you*! The blood test for celiac is thought by some to be relatively innacurate (especially if you were not ingesting gluten at the time) - and only good at detecting full-blown celiac disease - which is also highly under-diagnosed. If you have gluten sensitivity lower on the spectrum, the blood test would indeed not show it. You might want to look at testing from Dr. Fine, if you feel you *need* documentation of gluten sensitivity for your work. www.finerhealth.com He does a more sensitive form of stool testing to check for food intolerances, but it is not wildely known about by the medical profession...If you have medical documentation, will the military be more accomodating??
The fact that your son had diarrhea makes me suspect gluten sensitivity. MC (either LC or CC forms) is not hereditary (that we know) BUT gluten sensitivity/celiac definitely has a hereditary/genetic component!
Check out Dr. Fine's site and stick around here - most of us have BTDT, and some one will probably have some good employer advice!
Take care,
Mary
Hi AJ'sMom, and welcome aboard.
CAMary has already done a great job of addressing your questions, and I can only add that I agree with everything she said. As Mary mentioned, the blood tests for celiac disease are notorious for false negatives, and if you were on the GF diet for a few weeks before being tested, the test probably wouldn't have shown a positive result, even if you are a full-blown celiac. The sad fact is that many of us are just as gluten sensitive as celiacs, (and our symptoms are just as severe), but the blood tests simply don't give reliable results for us.
The stool tests for gluten sensitivity that she mentioned, (at Enterolab), will still detect gluten antibodies for up to a year after you have been on a GF diet, and they are extremely reliable. If the GF diet relieves your symptoms, though, that's pretty strong proof that you are gluten sensitive, which makes testing sort of redundant. Doctors, of course, always want to see a positive test result, before making a diagnosis, so you might need to do the test, for that reason. I also agree with Mary, that it would probably be a good idea to have your son tested, in view of his symptoms.
I believe that we have at least a couple of other members who are either in the military, or married to someone in the military, but unfortunately, they haven't logged on in some time.
You asked if the GF diet is a valid treatment for LC. The answer is - yes indeed, it is arguably the best treatment available. There are no effective drugs that are without risk, and LC cannot be permanently cured, so it requires either a permanent diet change, or a life-long treatment using a maintenance dose of an effective drug. The downside, is that most doctors don't recognize diet as an effective treatment for a disease, since they are trained to write prescriptions, (and you don't need a prescription for a diet change), so most of them either are not aware of how well it works, or they choose to deny it, since there are no research reports to verify it, (nor will there ever be, since all research is funded by the big pharmaceutical companies, and they're not going to pay for research that suggests that a patient can resolve all issues of a disease by diet alone).
Again welcome to the group.
Tex
CAMary has already done a great job of addressing your questions, and I can only add that I agree with everything she said. As Mary mentioned, the blood tests for celiac disease are notorious for false negatives, and if you were on the GF diet for a few weeks before being tested, the test probably wouldn't have shown a positive result, even if you are a full-blown celiac. The sad fact is that many of us are just as gluten sensitive as celiacs, (and our symptoms are just as severe), but the blood tests simply don't give reliable results for us.
The stool tests for gluten sensitivity that she mentioned, (at Enterolab), will still detect gluten antibodies for up to a year after you have been on a GF diet, and they are extremely reliable. If the GF diet relieves your symptoms, though, that's pretty strong proof that you are gluten sensitive, which makes testing sort of redundant. Doctors, of course, always want to see a positive test result, before making a diagnosis, so you might need to do the test, for that reason. I also agree with Mary, that it would probably be a good idea to have your son tested, in view of his symptoms.
I believe that we have at least a couple of other members who are either in the military, or married to someone in the military, but unfortunately, they haven't logged on in some time.
You asked if the GF diet is a valid treatment for LC. The answer is - yes indeed, it is arguably the best treatment available. There are no effective drugs that are without risk, and LC cannot be permanently cured, so it requires either a permanent diet change, or a life-long treatment using a maintenance dose of an effective drug. The downside, is that most doctors don't recognize diet as an effective treatment for a disease, since they are trained to write prescriptions, (and you don't need a prescription for a diet change), so most of them either are not aware of how well it works, or they choose to deny it, since there are no research reports to verify it, (nor will there ever be, since all research is funded by the big pharmaceutical companies, and they're not going to pay for research that suggests that a patient can resolve all issues of a disease by diet alone).
Again welcome to the group.
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.
Lymphocytic Colitis and the military
Thank you both so much for your quick replies! I'm going to take all this to my military doctor and see how the cookie crumbles (the gluten-free cookie, of course)! I'm also going to see about getting my son to a pediatric GI doctor, if one exists! Our pediatrician is awesome, but I'm hoping to get someone more specified. I'll keep you all posted. Who knows? Like so much of the information I've found here, maybe some of my experiences will be useful for others! Thank you all so much for maintaining this website! It's extremely helpful!
Mike,
Yes, as you point out, there are cases where patients experience spontaneous remission, and those remissions can last for unpredictable lengths of time, but I'm not aware that anyone has documented any research involving actual studies that show that such remission is permanent. Relapses can occur at any time, if treatment is suspended.
There is a relatively high percentage of the general population, who, upon undergoing a biopsy of the colon, show evidence of an episode, (or episodes), of MC, at some point in their past. However, these patients typically have never presented with the symptoms of chronic MC, so I suspect that they represent a subset of MCers who are either asymptomatic, or at the very least, never suffer from the chronic reactions that we all are so familiar with.
This area is in dire need of some careful research. Could it be that these individuals, (who experience spontaneous remission), are not gluten sensitive? That would explain why their issues might resolve without treatment. Of course, some doctors now claim that even some celiacs can eventually eat gluten again, without having problems, but again, this seems to work with only a relatively small percentage of patients, and the jury is still out on whether or not anyone sensitive to gluten can actually re-introduce it into their diet, without regretting it, somewhere down the road. These are uncharted waters.
For most of us here, we're not that lucky, obviously, and we have to be forever vigilant.
Tex
Yes, as you point out, there are cases where patients experience spontaneous remission, and those remissions can last for unpredictable lengths of time, but I'm not aware that anyone has documented any research involving actual studies that show that such remission is permanent. Relapses can occur at any time, if treatment is suspended.
There is a relatively high percentage of the general population, who, upon undergoing a biopsy of the colon, show evidence of an episode, (or episodes), of MC, at some point in their past. However, these patients typically have never presented with the symptoms of chronic MC, so I suspect that they represent a subset of MCers who are either asymptomatic, or at the very least, never suffer from the chronic reactions that we all are so familiar with.
This area is in dire need of some careful research. Could it be that these individuals, (who experience spontaneous remission), are not gluten sensitive? That would explain why their issues might resolve without treatment. Of course, some doctors now claim that even some celiacs can eventually eat gluten again, without having problems, but again, this seems to work with only a relatively small percentage of patients, and the jury is still out on whether or not anyone sensitive to gluten can actually re-introduce it into their diet, without regretting it, somewhere down the road. These are uncharted waters.
For most of us here, we're not that lucky, obviously, and we have to be forever vigilant.
Tex
Mary,
The only thing the others didn't address - I think - is that yes, it can be genetic. I tested negative by the blood test and the small bowel biopsy. So now Dr. # 3 uses Dr. Fine and his lab, Enterolab. They do the genetic testing as well as the stool test. I just did the tests and they came out very positive. I am eating GF but this doctor is re-examining the slides for microscopic colitis and if he confirms - which will most likely be the case - they intend on putting me on Prednisone for some length of time to settle the inflammation down. It is my understanding that not all celiacs have MC, am I right? We can't just stop eating Gluten and all the symptoms go away in a week like most celiacs. I guess it can be done without the addition of prednisone but may get quicker results with the drug. My children are grown and not having D symptoms but I will probably have them tested anyway.
Hope this helps! Good luck! I am sure the military docs are not any more responsive than most of the civilian docs. Hope you find a good one.
Pat
The only thing the others didn't address - I think - is that yes, it can be genetic. I tested negative by the blood test and the small bowel biopsy. So now Dr. # 3 uses Dr. Fine and his lab, Enterolab. They do the genetic testing as well as the stool test. I just did the tests and they came out very positive. I am eating GF but this doctor is re-examining the slides for microscopic colitis and if he confirms - which will most likely be the case - they intend on putting me on Prednisone for some length of time to settle the inflammation down. It is my understanding that not all celiacs have MC, am I right? We can't just stop eating Gluten and all the symptoms go away in a week like most celiacs. I guess it can be done without the addition of prednisone but may get quicker results with the drug. My children are grown and not having D symptoms but I will probably have them tested anyway.
Hope this helps! Good luck! I am sure the military docs are not any more responsive than most of the civilian docs. Hope you find a good one.
Pat
My first GI DR said that the only people who a GF diet works for are Celiacs. I was tested for celiac through blood and a scope and nothing was found. But I took the test from Enterolab and said I was gluten intolerant (as well as dairy) and cut them out and have been feeling better.
I went GF about 4 days before i met with my first GI and started to feel a little better and had a normalish BM and then my Gi said to start eating gluten again and well blah blah blah it delayed my healing for about 2 years.
Keep gluten free!! It must be hard being in active duty and having to eat GF... how do you manage to do that... would you still be able to eat GF if you were deployed somewhere?
I went GF about 4 days before i met with my first GI and started to feel a little better and had a normalish BM and then my Gi said to start eating gluten again and well blah blah blah it delayed my healing for about 2 years.
Keep gluten free!! It must be hard being in active duty and having to eat GF... how do you manage to do that... would you still be able to eat GF if you were deployed somewhere?
Dr Fine test shows positive for gluten and casien but negative for soy, eggs, and yeast
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!
Maybe its UC maybe its MC? Who knows at this point, but at least I know my intollerances now... so heres to the road to healing!