I posted this on another board, but didn't get much response. Sorry if you are seeing this for a 2nd time:
My 2 1/2 year old daughter was just diagnosed with LC. It look 5 months of 4-8 diarrhea diapers every day and what feels like a million tests to come to that diagnosis. It feels good to have a reason, but it is so scary because she is so young. Her Dr. says it is EXTREMELY rare for children to have LC. She has never seen it in someone as young as my daughter. We go to the Children's Hospital of Philadelphia, which is one of the leading children's hospitals in the country. She is having another colonoscopy in a few weeks to make 100% sure that this is the correct diagnosis. She was diagnosed from the biopsy from her sigmoidoscopy.
She has tested negative for Celiac and everything else. She has tested positive (skin tests) that she is allergic to cow's milk, wheat and cocoa bean. We eliminated cow's milk (which she usually drank with no problem) for 3 months...that didn't work. Then we eliminated Wheat/Gluten (but I didn't take out oats) and that seemed to help for about 3 days then she went back to the normal diarrhea. Then we took fructose out and that did nothing.
Now that we have this diagnosis we have gone back to wheat free/gluten free diet....this time with the oats. She has been on the diet for 2 days now....nothing good to report so far :(
Any advice would be appreciated. Has anyone known a child that has this condition? Should I try enterolab testing??
Thanks,
Camryn's Mommy
My 2 Year Old was just diagnosed with LC :(
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Camryn'sMommy
- Adélie Penguin
- Posts: 87
- Joined: Thu Aug 21, 2008 1:49 pm
- Location: Langhorne, PA, USA
My 2 Year Old was just diagnosed with LC :(
Mommy to Camryn - 8 years old - dx'd with LC 8/08
Hi Camryn's Mommy, and welcome to the board.
We have one or two other members with children in that age group who have MC, but neither of them have posted in a long time, so I have no idea how they are doing.
I'm not sure why your doctor is doing another biopsy, presumably because of your daughters age, but the first test result is almost certainly correct, provided the pathologist who did the analysis was experienced in diagnosing LC.
You are on the right track. If you have done much reading on this site, you already know that most of us are very gluten sensitive, (even though we test negative to the classic celiac diagnostic tests), and a high percentage of us are also sensitive to casein, (the primary protein in dairy products). If you are looking for other items to eliminate from her diet, the third most common food intolerance here is soy.
It often takes a while for the diet to work, so please give it adequate time to take effect. It took some of us about a year, but hopefully you will see results in a couple of weeks, (I wouldn't give up on it though, without trying it for at least a couple of months, because some other food might also be triggering the D, and that will also have to be eliminated before remission can be achieved. I would certainly eliminate oats at this point, also, (as you are apparently doing), because not only is there a high risk of cross-contamination with wheat in oats, but some of us, (myself included), are intolerant to the avenin in oats. Avenin is the protein in oats that is the equivalent to gluten in wheat.
Enterolab testing can remove any doubt about certain food intolerances, but if eliminating those foods from her diet brings relief, then that's as good as a lab test, as far as validity is concerned. I'm pretty sure her doctor has already mentioned this, but just in case, make sure she doesn't get dehydrated, and be aware that the type of gluten intolerance that we have can cause a malabsorption problem, similar to celiac disease, so you may need to supplement certain vitamins, such as vitamin B-12, in particular, if the D lasts for a significant period of time.
The thing is, of course, in order for her to attain remission, all of the foods that she is intolerant of will have to be eliminated from her diet at the same time. If even just traces of one trigger food remains in her diet, she may react just as significantly as if she were eating normal amounts of all of her intolerances. (I hope you understand what I'm trying to say here). Also, if you have a GI doc who recognizes that almost all MC patients are gluten sensitive, then you are much more fortunate than most of us. Most GI docs still insist that diet has absolutely nothing to do with MC, but a few of them are beginning to see the light.
My heart goes out to you. It's bad enough to have this disease as an adult, let alone having to contend with it as a child. If you are able to fine tune her diet, though, you will find that she will be able to thrive, and, (other than having to carefully watch her diet for the rest of her life), she will be able to live a pretty much normal life. Actually, kids can usually adapt to a lifestyle change such as "the diet", much easier than adults.
Again, welcome aboard, and please feel free to ask anything.
Tex
We have one or two other members with children in that age group who have MC, but neither of them have posted in a long time, so I have no idea how they are doing.
I'm not sure why your doctor is doing another biopsy, presumably because of your daughters age, but the first test result is almost certainly correct, provided the pathologist who did the analysis was experienced in diagnosing LC.
You are on the right track. If you have done much reading on this site, you already know that most of us are very gluten sensitive, (even though we test negative to the classic celiac diagnostic tests), and a high percentage of us are also sensitive to casein, (the primary protein in dairy products). If you are looking for other items to eliminate from her diet, the third most common food intolerance here is soy.
It often takes a while for the diet to work, so please give it adequate time to take effect. It took some of us about a year, but hopefully you will see results in a couple of weeks, (I wouldn't give up on it though, without trying it for at least a couple of months, because some other food might also be triggering the D, and that will also have to be eliminated before remission can be achieved. I would certainly eliminate oats at this point, also, (as you are apparently doing), because not only is there a high risk of cross-contamination with wheat in oats, but some of us, (myself included), are intolerant to the avenin in oats. Avenin is the protein in oats that is the equivalent to gluten in wheat.
Enterolab testing can remove any doubt about certain food intolerances, but if eliminating those foods from her diet brings relief, then that's as good as a lab test, as far as validity is concerned. I'm pretty sure her doctor has already mentioned this, but just in case, make sure she doesn't get dehydrated, and be aware that the type of gluten intolerance that we have can cause a malabsorption problem, similar to celiac disease, so you may need to supplement certain vitamins, such as vitamin B-12, in particular, if the D lasts for a significant period of time.
The thing is, of course, in order for her to attain remission, all of the foods that she is intolerant of will have to be eliminated from her diet at the same time. If even just traces of one trigger food remains in her diet, she may react just as significantly as if she were eating normal amounts of all of her intolerances. (I hope you understand what I'm trying to say here). Also, if you have a GI doc who recognizes that almost all MC patients are gluten sensitive, then you are much more fortunate than most of us. Most GI docs still insist that diet has absolutely nothing to do with MC, but a few of them are beginning to see the light.
My heart goes out to you. It's bad enough to have this disease as an adult, let alone having to contend with it as a child. If you are able to fine tune her diet, though, you will find that she will be able to thrive, and, (other than having to carefully watch her diet for the rest of her life), she will be able to live a pretty much normal life. Actually, kids can usually adapt to a lifestyle change such as "the diet", much easier than adults.
Again, welcome aboard, and please feel free to ask anything.
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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kate_ce1995
- Rockhopper Penguin
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- Location: Vermont
Welcome on board. So sorry to hear that your daughter is having this problem. What other foods is she eating? One of the big problems a lot of us have when we are flaring is wtih too much fiber. If you are feeding her veggies for that nice balanced diet, you may want to cut back for a bit to see if it helps. Once the gut starts to heal we usually tolerate veggies/fiber without difficulty. Some veggies are worse than others too. For example, lettuce seems to be a pretty major offender for those of us with active MC. Now I don't know too many 2 1/2 year olds having a nice garden salad for lunch, but its a thought. Well cooked veggies should be the first to be reintroduced. Again, its not an intolerance to the veggies, its the need for the gut to heal. Let it rest with a mild diet for at least a few days and see how she does...rice, chicken seasoned with only salt, maybe pepper depending on your daughter's palate (I really don't have a lot of experience with kids of this age...and I just remember my mom feeding us kids the same foods as the adults ate). Mashed potatoes are good...hold the milk and butter if she is dairy intolerant.
Keep us posted on her progress. We all learn something from others going through this disease.
Katy
Keep us posted on her progress. We all learn something from others going through this disease.
Katy
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Camryn'sMommy
- Adélie Penguin
- Posts: 87
- Joined: Thu Aug 21, 2008 1:49 pm
- Location: Langhorne, PA, USA
Thanks for replying Tex and Kate - I appreciate it. Her diet before mostly consisted of macaroni and cheese, pizza, waffles and milk. She doesn't eat many veggies or salads to begin with...but she loves fruit. Now she drinks soy milk (which she loves) and she is eating gluten-free....which is so hard in a 2 year old since they are soooo picky to begin with. I haven't taken the dairy products out yet this time. I'm giving the gluten-free only diet 1 week....if it does nothing, then I'll take out dairy along with the gluten. If that doesn't work, I'll also take out chocolate. I just don't want to take everything out at once and not know what worked. Are there any books on gluten intolerance that you recommend? It is so hard to shop for food!
Maybe you guys can help me. I got a copy of the final report from her biopsy. It is like a foreign language to me...can you tell me if there is anything I might be missing. Is there anything I should ask the Dr. to look for during the next colonoscopy?
Here is the report:
PRE-OP Diagnosis: Failure to Thrive, Diarrhea
POST-OP Diagnosis: SAA (not sure what that means)
HISTORY: 28 month old without weight gain in one year. Positive watery diarrhea. (It was really only 6 months, not sure why it says 1 year)
Final Diagnosis:
A: Esophagus: Squamous mucosa with scattered intraepithelial eosinophils - less than 3 per high power field. (not sure what this means yet).
B: Stomach: Unremarkable gastric antral mucosa
C: Duodenum: Unremarkable small bowel mucosa, with well preserved villous morphology (means no Celiac, right?)
D: Sigmoid Colon: Lymphocytic Colitis.
NOTE: The colonic mucosa is characterized by an increased cellular infiltrate in the lamina propria, composed mainly of lymphocytes and plasma cells, with extensive lymphocytic infiltration of colonic crypts and increased crypt apoptolic activity. The surface epithelium is markedly attenuated and atrophic. The subepithelial table is slightly thickened, but not enough to warrant a diagnosis of collagenous colitis.
Thanks,
Camryn's Mommy
Maybe you guys can help me. I got a copy of the final report from her biopsy. It is like a foreign language to me...can you tell me if there is anything I might be missing. Is there anything I should ask the Dr. to look for during the next colonoscopy?
Here is the report:
PRE-OP Diagnosis: Failure to Thrive, Diarrhea
POST-OP Diagnosis: SAA (not sure what that means)
HISTORY: 28 month old without weight gain in one year. Positive watery diarrhea. (It was really only 6 months, not sure why it says 1 year)
Final Diagnosis:
A: Esophagus: Squamous mucosa with scattered intraepithelial eosinophils - less than 3 per high power field. (not sure what this means yet).
B: Stomach: Unremarkable gastric antral mucosa
C: Duodenum: Unremarkable small bowel mucosa, with well preserved villous morphology (means no Celiac, right?)
D: Sigmoid Colon: Lymphocytic Colitis.
NOTE: The colonic mucosa is characterized by an increased cellular infiltrate in the lamina propria, composed mainly of lymphocytes and plasma cells, with extensive lymphocytic infiltration of colonic crypts and increased crypt apoptolic activity. The surface epithelium is markedly attenuated and atrophic. The subepithelial table is slightly thickened, but not enough to warrant a diagnosis of collagenous colitis.
Thanks,
Camryn's Mommy
Mommy to Camryn - 8 years old - dx'd with LC 8/08
You've come to the right place for the best information. I found the other site first, too. I can't begin to tell you how happy I am to have found the PP site.I have just tested with EnteroLab for gluten and casein sensitivity. I have both. I also did the gene test which says that I have the gluten sensitivity gene from both my parents. (Lucky me) I used to eat oatmeal every morning for my cholesterol........not any more.
I'm waiting to get my soy, yeast and egg results which I ordered after getting the first results. I am doing pretty well with just diet and no meds. It even got the attention of my GI!
There is a children's book titled No More Cupcakes and Tummy Aches. It is by the author of the GF Bible, Jax Peters Lowell. It is for children diagnosed with Celiac Disease so you'd need to check out the contents.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Camryn's Mommy,
I'm not sure what "POST-OP Diagnosis: SAA" means either. SAA is commonly used to represent "Serum Amyloid A", but it doesn't make much sense when used in that context. Basically, serum amyloid A is a "superfamily" of acute-phase proteins. The level of serum amyloid A in the blood, increases dramatically in response to tissue injury and inflammation, which is certainly the case for someone with MC. However, SAA is simply a lab test result, it is not a diagnosis of anything in particular, (other than inflammation). That phrase in the report may simply be "pathologist speak", IOW shorthand for a mutually understood term used primarily in the field of pathology, rather than a universally recognized medical term.
The error in the time statement, (one year, rather than 6 months), was probably just a transcription error, (kind of sloppy, but everyone makes mistakes, if they are human).
The statement about the condition of her esophagus was in reference to ruling out Eosinophilic Esophagitis, (EE). EE mimics GastroEsophageal Reflux Disease, (GERD), (which is commonly associated with MC, (IOW, many of us have GERD), but it won't respond to the usual treatments for GERD. This is the diagnostic criteria for EE: (non-allergic, <15 eosinophils/high power field; allergic, ≥15 eosinophils/high power field). Since she had less than three eosinophils per high power field, (HPF), she obviously does not have EE. Eosinophils and lymphocytes are just special types of white blood cells that are found in certain types of inflammation. They're a natural part of the body's immune system defense response.
Her stomach checked out fine, and you're correct, without villous atrophy in the upper part of the small intestine, classic celiac disease is ruled out. Note that virtually all doctors know enough about the issue to recognize that damage to the villus architecture of the upper small intestine is a marker of gluten intolerance, (officially defined as celiac sprue), but only a small percentage of GI docs recognize that the damage to the colon, (as defined by the markers of MC), is due to gluten intolerance. IOW, in celiac disease, gluten primarily damages the small intestine, while with MC, gluten primarily damages the colon, (though it also sometimes causes damage to the ilium, and even upper parts of the small intestine). In fact, like Crohn's disease, the entire GI tract can be affected in some patients. For example, mouth sores are somewhat common in untreated MC.
The "Note" at the end of the report is so clear that I really don't see how anyone could dispute the diagnosis of LC. In fact, the statement: "The subepithelial table is slightly thickened, but not enough to warrant a diagnosis of collagenous colitis." suggests that if another lower endoscopy is done, (a colonoscopy), by then, she may indeed have sufficient thickening of the subepithelial collagen bands to justify a diagnosis of CC. It's a moot point, however, since the symptoms, and the treatment, are exactly the same.
To be candid, if it were my gut on the table here, in the face of that pathology report, a doctor would have a very tough job on his or her hands, if they intended to convince me to allow my gut to be subjected to a colonoscopy exam, especially so close behind the sigmoidoscopy exam. The reason I say that is because I went through exactly that same combination of exams myself, (with a bunch of other tests in between), and the doctor didn't learn anything more from the colonoscopy, than he did from the sigmoidoscopy, (but I did, by watching the monitor, during the exam). The reason he didn't learn anything from either exam, is because he failed to take biopsy samples both times. That was back in the days when I was naive, and believed that doctors always knew what they were doing. LOL.
Seriously, though, a colonoscopy is not without risk, especially if a patient has CC, because the examining doc uses air to inflate the colon during the exam, and it is not uncommon for splits to occur, (due to weakening in the colonic walls, caused by the subepithelial collagen band thickening). When that happens, of course, if the split is significant enough to result in a perforation, then prompt emergency abdominal surgery is required, in order to save the patients life. Even if perforation does not occur, I have grave doubts about the benefits of longitudinal splits in the colon walls, as far as the future integrity of the colon is concerned. There is no way that could be a good thing, in the long run. This not an insignificant risk, though it is still a somewhat small risk, (a few percent of patients experience splits severe enough to cause perforations). Dr. Fine, for that reason, does not use colonoscopy exams for MC patients, or suspected MC patients.
Tex
P S Regarding information on the diet, the book that Joan recommended is good, (along with other books by Jax Peters Lowell), but you can find volumes of information right here on this site, in these forums:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
http://www.perskyfarms.com/phpBB2/viewforum.php?f=27
I'm not sure what "POST-OP Diagnosis: SAA" means either. SAA is commonly used to represent "Serum Amyloid A", but it doesn't make much sense when used in that context. Basically, serum amyloid A is a "superfamily" of acute-phase proteins. The level of serum amyloid A in the blood, increases dramatically in response to tissue injury and inflammation, which is certainly the case for someone with MC. However, SAA is simply a lab test result, it is not a diagnosis of anything in particular, (other than inflammation). That phrase in the report may simply be "pathologist speak", IOW shorthand for a mutually understood term used primarily in the field of pathology, rather than a universally recognized medical term.
The error in the time statement, (one year, rather than 6 months), was probably just a transcription error, (kind of sloppy, but everyone makes mistakes, if they are human).
The statement about the condition of her esophagus was in reference to ruling out Eosinophilic Esophagitis, (EE). EE mimics GastroEsophageal Reflux Disease, (GERD), (which is commonly associated with MC, (IOW, many of us have GERD), but it won't respond to the usual treatments for GERD. This is the diagnostic criteria for EE: (non-allergic, <15 eosinophils/high power field; allergic, ≥15 eosinophils/high power field). Since she had less than three eosinophils per high power field, (HPF), she obviously does not have EE. Eosinophils and lymphocytes are just special types of white blood cells that are found in certain types of inflammation. They're a natural part of the body's immune system defense response.
Her stomach checked out fine, and you're correct, without villous atrophy in the upper part of the small intestine, classic celiac disease is ruled out. Note that virtually all doctors know enough about the issue to recognize that damage to the villus architecture of the upper small intestine is a marker of gluten intolerance, (officially defined as celiac sprue), but only a small percentage of GI docs recognize that the damage to the colon, (as defined by the markers of MC), is due to gluten intolerance. IOW, in celiac disease, gluten primarily damages the small intestine, while with MC, gluten primarily damages the colon, (though it also sometimes causes damage to the ilium, and even upper parts of the small intestine). In fact, like Crohn's disease, the entire GI tract can be affected in some patients. For example, mouth sores are somewhat common in untreated MC.
The "Note" at the end of the report is so clear that I really don't see how anyone could dispute the diagnosis of LC. In fact, the statement: "The subepithelial table is slightly thickened, but not enough to warrant a diagnosis of collagenous colitis." suggests that if another lower endoscopy is done, (a colonoscopy), by then, she may indeed have sufficient thickening of the subepithelial collagen bands to justify a diagnosis of CC. It's a moot point, however, since the symptoms, and the treatment, are exactly the same.
To be candid, if it were my gut on the table here, in the face of that pathology report, a doctor would have a very tough job on his or her hands, if they intended to convince me to allow my gut to be subjected to a colonoscopy exam, especially so close behind the sigmoidoscopy exam. The reason I say that is because I went through exactly that same combination of exams myself, (with a bunch of other tests in between), and the doctor didn't learn anything more from the colonoscopy, than he did from the sigmoidoscopy, (but I did, by watching the monitor, during the exam). The reason he didn't learn anything from either exam, is because he failed to take biopsy samples both times. That was back in the days when I was naive, and believed that doctors always knew what they were doing. LOL.
Seriously, though, a colonoscopy is not without risk, especially if a patient has CC, because the examining doc uses air to inflate the colon during the exam, and it is not uncommon for splits to occur, (due to weakening in the colonic walls, caused by the subepithelial collagen band thickening). When that happens, of course, if the split is significant enough to result in a perforation, then prompt emergency abdominal surgery is required, in order to save the patients life. Even if perforation does not occur, I have grave doubts about the benefits of longitudinal splits in the colon walls, as far as the future integrity of the colon is concerned. There is no way that could be a good thing, in the long run. This not an insignificant risk, though it is still a somewhat small risk, (a few percent of patients experience splits severe enough to cause perforations). Dr. Fine, for that reason, does not use colonoscopy exams for MC patients, or suspected MC patients.
Tex
P S Regarding information on the diet, the book that Joan recommended is good, (along with other books by Jax Peters Lowell), but you can find volumes of information right here on this site, in these forums:
http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
http://www.perskyfarms.com/phpBB2/viewforum.php?f=7
http://www.perskyfarms.com/phpBB2/viewforum.php?f=27
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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Camryn'sMommy
- Adélie Penguin
- Posts: 87
- Joined: Thu Aug 21, 2008 1:49 pm
- Location: Langhorne, PA, USA
Tex,
Thank you so much for all the detail...it makes things so much clearer to me. So you wouldn't have her get the colonoscopy? The reason the Dr. gave me for wanting to do it was that they didn't get to see the entire colon...just the sigmoid colon. My daughter woke up on the table during the sigmoidscopy...so they didn't go any further. The Dr. said going further has a low yield. But now they want to see everything to make sure they aren't missing anything else. Honestly, I think they just want to do it again b/c they never see this in children...I think they want to do it to double check the diagnosis. Now I don't know if I want it done. I'm not crazy about her going under GA....they had a hard time getting her to fall asleep last time with the twilight. They had to give her 2 additional doses and she still woke up on the table. Plus, I don't like the increased risk of perforation.
I called my GI Dr. today to see if a biopsy was done during my last colonoscopy. He didn't do one...and he didn't do one when I had the one before that. I had a polyp (benign) removed that time. I've also been diagnosed with GERD, gastritis, IBS, endometriosis and psoriasis.....makes me think about the autoimmune link (I've read some about it on this site). My Mom also has rheumatoid arthritis, lupus and endometriosis....maybe it runs in my family. (BTW - I'm only 27!)
JLH,
Thanks - I did buy the Rice Chex and she likes it!
Thanks,
Camryn's Mommy
Thank you so much for all the detail...it makes things so much clearer to me. So you wouldn't have her get the colonoscopy? The reason the Dr. gave me for wanting to do it was that they didn't get to see the entire colon...just the sigmoid colon. My daughter woke up on the table during the sigmoidscopy...so they didn't go any further. The Dr. said going further has a low yield. But now they want to see everything to make sure they aren't missing anything else. Honestly, I think they just want to do it again b/c they never see this in children...I think they want to do it to double check the diagnosis. Now I don't know if I want it done. I'm not crazy about her going under GA....they had a hard time getting her to fall asleep last time with the twilight. They had to give her 2 additional doses and she still woke up on the table. Plus, I don't like the increased risk of perforation.
I called my GI Dr. today to see if a biopsy was done during my last colonoscopy. He didn't do one...and he didn't do one when I had the one before that. I had a polyp (benign) removed that time. I've also been diagnosed with GERD, gastritis, IBS, endometriosis and psoriasis.....makes me think about the autoimmune link (I've read some about it on this site). My Mom also has rheumatoid arthritis, lupus and endometriosis....maybe it runs in my family. (BTW - I'm only 27!)
JLH,
Thanks - I did buy the Rice Chex and she likes it!
Thanks,
Camryn's Mommy
My LC was diagnosed from a sigmoidoscopy in June. Colonoscopy in Feb. did nothing to diagnose my problem.
Have you looked at the EnteroLab site and Dr. Fine's other sites?
See what Tex says about an IBS diagnosis.....Perhaps, your IBS is MC (LC or CC) but you won't know w/o a biopsy. I'll post my genetic lab results interpretation.
Have you looked at the EnteroLab site and Dr. Fine's other sites?
See what Tex says about an IBS diagnosis.....Perhaps, your IBS is MC (LC or CC) but you won't know w/o a biopsy. I'll post my genetic lab results interpretation.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
EL Interpretation of my gene test
"Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe."
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
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Sara East
- Little Blue Penguin
- Posts: 36
- Joined: Thu Jun 12, 2008 12:16 pm
- Location: New Hampshire
- Contact:
Really sorry to hear that about your daughter! I have 3 little one's of my own and wouldn't wish LC on my worst enemy let alone one of my kids. I need to mention that to my doc because she is having a really hard time believing my diagnosis because of my age at the time of the first diagnosis which was 23. I'm 30 now and still trying to get it under control with no luck but my doc still keeps giving me the "We have to be missing something, you're too young and I don't have any other patient with it even close to your age." HELLO, we're out here, I've been diagnosed twice, how many more colonoscopies does she want done??
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Camryn'sMommy
- Adélie Penguin
- Posts: 87
- Joined: Thu Aug 21, 2008 1:49 pm
- Location: Langhorne, PA, USA
Sara,
Yeah, my daughter's Dr. was completely shocked with the pathologist's diagnosis. I feel so bad for her...I feel helpless. I really don't want to put her on strong meds at her age. Who knows what the long term effects are. I hope removing the gluten from her diet works. Did you do that? Did it work for you? I think I'm going to get the enterolab testing for her. Does everyone think it is worth it to get the complete panel for $369?
Thanks,
Camryn's Mommy
Yeah, my daughter's Dr. was completely shocked with the pathologist's diagnosis. I feel so bad for her...I feel helpless. I really don't want to put her on strong meds at her age. Who knows what the long term effects are. I hope removing the gluten from her diet works. Did you do that? Did it work for you? I think I'm going to get the enterolab testing for her. Does everyone think it is worth it to get the complete panel for $369?
Thanks,
Camryn's Mommy
Mommy to Camryn - 8 years old - dx'd with LC 8/08
I'm not a medical professional, so I'm not qualified to advise anyone from a medical standpoint, but I have a very strong hunch that you are quite correct - her doctor, (and associates), see this as a great opportunity to learn, and probably, they also see it as an opportunity to get an article published in the medical journals, (which might provide a nice little career boost).
The admission that "going further has a low yield" is certainly accurate. Statistically, it's possible to miss MC, by taking biopsy samples during a sigmoidoscopy, because areas of inflammation are typically more likely to be found in the ascending, transverse, and descending colon, than in the sigmoid colon. If lymphocytic infiltration is present between the epithelial cells of the sigmoid colon, however, you can bet your bottom dollar that the problem will be present in the rest of the colon. The inflammation associated with MC usually presents in "patches", or random shaped areas scattered about the inner surface of the colon. Inflammation is typically not present everywhere on the mucosal surface of the colon, and it often tends to taper off toward the distal end of the colon, (the sigmoid and rectal sections). If she had Ulcerative Colitis, (UC), it would not be missed in a sigmoidoscopy, since UC always presents in the sigmoid section of the colon, and while Crohn's disease can affect the entire GI tract, (or virtually any part of it), if it were present, markers should not be missing in the sigmoid section, since the gross, (visible to the naked eye), lesions are pretty hard to miss during an exam.
IOW, yes, I see no reason why they would need to examine the rest of the colon, except to satisfy their professional curiosity. Clearly, the information gathered during a colonoscopy exam would greatly support their position, if their goal was to write an article. (Without that data, the reviewers might question their thoroughness, from an educational viewpoint). In reality, though, about all that it would accomplish, would be to verify that the condition of the rest of the colon, was consistent with their findings in the sigmoid section. A diagnosis of LC is already in hand. Nothing that they could find during another exam would negate the existing diagnosis, since it appears to be "iron-clad".
Our collective experience on this board has been that the difference between MC and IBS, usually boils down to whether or not biopsies are taken during a colonoscopy. You can't find MC, unless you know how to look for it, and, of course, you must make a conscious effort to look for it, (by taking biopsy samples). If biopsies are not taken, the default diagnosis is virtually always IBS. With all those autoimmune issues, (plus the genetics inherited from your mother), I would be willing to bet, (and maybe give odds), that you also have MC, (though you may currently be symptom-free, for all I know).
It's possible to have MC without Diarrhea, (D), and some of us have alternating D and Constipation, (C). A few have only C, but usually, if someone has predominantly C, rather than D, they don't even bother to pursue a diagnosis, and very, very few GI docs would expect C to be connected with MC, since the medical journals typically describe MC as "a disease presenting with chronic diarrhea, usually in older women". Katy, (who responded in this thread), was about your age when she was diagnosed with MC. She also has endometriosis, but I don't recall whether she has other autoimmune issues.
All of us, (I'm guessing, since not all of us have been tested, but so far everyone who has had the gene test has had 100% compliance), have either a celiac gene, or an alternate gene that prodisposes us to gluten sensitivity, and some of us have duplicate copies. Duplicate copies, or multiple copies, usually mean a heightened sensitivity, but there are no guarantees on that, of course, since it's possible to have a celiac gene, for example, and yet never develop celiac sprue. On the other hand, developing the disease without having the gene, is virtually unheard of, and probably occurs in a few cases due to the presence of an undiscovered, (uncatalogued), gene.
IMO, with your history of autoimmune issues, (and a "supposed" diagnosis of IBS), your doctor dropped the ball, when he didn't take biopsy samples during your last exam. Since he was already doing a colonoscopy exam, taking biopsy samples would have been a relatively minor addition to the task at hand, but doing so might have revealed some truly eye-opening evidence under the microscope. Sometimes doctors don't think - maybe they're in too big a hurry to "think". Of course, that applies to most of us, occasionally, also.
Tex
P. S. Yes, I think that test panel is a good investment, if you can afford it, but be aware that some insurance companies refuse to pay for stool tests, (since they're relatively new technology), and of the ones that do pay, many require that the test must be ordered by a doctor.
The admission that "going further has a low yield" is certainly accurate. Statistically, it's possible to miss MC, by taking biopsy samples during a sigmoidoscopy, because areas of inflammation are typically more likely to be found in the ascending, transverse, and descending colon, than in the sigmoid colon. If lymphocytic infiltration is present between the epithelial cells of the sigmoid colon, however, you can bet your bottom dollar that the problem will be present in the rest of the colon. The inflammation associated with MC usually presents in "patches", or random shaped areas scattered about the inner surface of the colon. Inflammation is typically not present everywhere on the mucosal surface of the colon, and it often tends to taper off toward the distal end of the colon, (the sigmoid and rectal sections). If she had Ulcerative Colitis, (UC), it would not be missed in a sigmoidoscopy, since UC always presents in the sigmoid section of the colon, and while Crohn's disease can affect the entire GI tract, (or virtually any part of it), if it were present, markers should not be missing in the sigmoid section, since the gross, (visible to the naked eye), lesions are pretty hard to miss during an exam.
IOW, yes, I see no reason why they would need to examine the rest of the colon, except to satisfy their professional curiosity. Clearly, the information gathered during a colonoscopy exam would greatly support their position, if their goal was to write an article. (Without that data, the reviewers might question their thoroughness, from an educational viewpoint). In reality, though, about all that it would accomplish, would be to verify that the condition of the rest of the colon, was consistent with their findings in the sigmoid section. A diagnosis of LC is already in hand. Nothing that they could find during another exam would negate the existing diagnosis, since it appears to be "iron-clad".
Our collective experience on this board has been that the difference between MC and IBS, usually boils down to whether or not biopsies are taken during a colonoscopy. You can't find MC, unless you know how to look for it, and, of course, you must make a conscious effort to look for it, (by taking biopsy samples). If biopsies are not taken, the default diagnosis is virtually always IBS. With all those autoimmune issues, (plus the genetics inherited from your mother), I would be willing to bet, (and maybe give odds), that you also have MC, (though you may currently be symptom-free, for all I know).
It's possible to have MC without Diarrhea, (D), and some of us have alternating D and Constipation, (C). A few have only C, but usually, if someone has predominantly C, rather than D, they don't even bother to pursue a diagnosis, and very, very few GI docs would expect C to be connected with MC, since the medical journals typically describe MC as "a disease presenting with chronic diarrhea, usually in older women". Katy, (who responded in this thread), was about your age when she was diagnosed with MC. She also has endometriosis, but I don't recall whether she has other autoimmune issues.
All of us, (I'm guessing, since not all of us have been tested, but so far everyone who has had the gene test has had 100% compliance), have either a celiac gene, or an alternate gene that prodisposes us to gluten sensitivity, and some of us have duplicate copies. Duplicate copies, or multiple copies, usually mean a heightened sensitivity, but there are no guarantees on that, of course, since it's possible to have a celiac gene, for example, and yet never develop celiac sprue. On the other hand, developing the disease without having the gene, is virtually unheard of, and probably occurs in a few cases due to the presence of an undiscovered, (uncatalogued), gene.
IMO, with your history of autoimmune issues, (and a "supposed" diagnosis of IBS), your doctor dropped the ball, when he didn't take biopsy samples during your last exam. Since he was already doing a colonoscopy exam, taking biopsy samples would have been a relatively minor addition to the task at hand, but doing so might have revealed some truly eye-opening evidence under the microscope. Sometimes doctors don't think - maybe they're in too big a hurry to "think". Of course, that applies to most of us, occasionally, also.
Tex
P. S. Yes, I think that test panel is a good investment, if you can afford it, but be aware that some insurance companies refuse to pay for stool tests, (since they're relatively new technology), and of the ones that do pay, many require that the test must be ordered by a doctor.
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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Sara East
- Little Blue Penguin
- Posts: 36
- Joined: Thu Jun 12, 2008 12:16 pm
- Location: New Hampshire
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I haven't tried gluten free yet but I go in Thursday for endoscopy where they will take biopsies of my small intestine. The doc said that is the best way to know for certain if I have Ciliac's disease because the blood tests can come back negative even if you have it. Tex knows a lot about it and has given me some great information on LC and Ciliac's :) I am truly sorry your baby has this, it's so hard to see your own child in pain and not be able to do anything about it. I've been on TONS of meds for the past 7 years with no relief but many people have found things that work well for them and some people have even gone into remission permanently. One thing that has worked some what for me is the Dan Active yogurt. I don't know how or why but eating that particular brand of yogurt twice a day has reduced some of the pain and frequency. Cutting out fruit juice has also been somewhat helpful. If you haven't tried it yet, Triple Paste ointment helps tremendously with rashes. I use it on my kids when they get diaper rash from diarrhea and even on myself for the same problem lol :) The stuff is gold (it costs about as much too :) I'll keep my fingers crossed that you and your doc can come up with some treatment plan that works and doesn't involve heavy duty meds. Right now I take Bentyl for pain, amitrypteline for pain and constipation side effects, and tincture of opium for the same reasons. I go around in a fog all day and it's hell trying to keep up with my 3 little ones feeling like that but it makes the difference from me going 10 times a day to more like 7...I'll try anything to stay off the potty!