hi everyone my name is keely i have a little girl called sophie who turned 2 on monday. she was diagnosed with lymphocytic colitis at just 15 months old through a biopsy.
microscopic colitis has caused my little girl to be a failure to thrive even tho she eats loads. hope everyone is well xx
2 year old with mc
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angel_babez1988
- Posts: 3
- Joined: Thu Aug 20, 2015 1:38 pm
- Location: derbyshire
2 year old with mc
sophie
Hi Keely,
Welcome to our Internet family. We consider ourselves to be a family because no one truly understands this disease unless they actually have it (or they have to take care of someone who has it). I'm sorry that you and your daughter are having to deal with this disease, especially in view of your daughter's young age. We feel your pain. If you haven't already realized this, please be aware that most GI specialists do not have the faintest idea how to treat LC, because they continue to insist that diet has nothing to do with it, despite all the evidence to the contrary. On this discussion board, we control our symptoms by making diet changes, and many of us have been in remission for many years, by diet changes alone. Others here use a combination of diet changes and medications. But the point is, we manage to control our symptoms by avoiding the foods that generate the inflammation in our intestines that causes the disease, so that we can get on with our lives.
I have posted some links below that lead to posts made by another member who found herself in almost the same situation as you, 7 years ago. You should find these discussions to be very encouraging for your daughter's future development.
My 2 Year Old was just diagnosed with LC :(
Camryn's Enterolab Results are in!
Hi everyone - update on Camryn
And here's an update made 3 years after Camryn's mother joined this discussion board:
Hi everyone - it has been a while!
As far as I am aware, Camryn is still a healthy, happy young lady, and she is now 9 1/2 years old, and doing well by sticking to a safe diet.
Please be aware that failure to thrive in a child is virtually always due to undiagnosed gluten sensitivity. The primitive blood tests used by physicians are not capable of detecting the type of gluten sensitivity that is associated with LC. Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. We consider ourselves to be a family because no one truly understands this disease unless they actually have it (or they have to take care of someone who has it). I'm sorry that you and your daughter are having to deal with this disease, especially in view of your daughter's young age. We feel your pain. If you haven't already realized this, please be aware that most GI specialists do not have the faintest idea how to treat LC, because they continue to insist that diet has nothing to do with it, despite all the evidence to the contrary. On this discussion board, we control our symptoms by making diet changes, and many of us have been in remission for many years, by diet changes alone. Others here use a combination of diet changes and medications. But the point is, we manage to control our symptoms by avoiding the foods that generate the inflammation in our intestines that causes the disease, so that we can get on with our lives.
I have posted some links below that lead to posts made by another member who found herself in almost the same situation as you, 7 years ago. You should find these discussions to be very encouraging for your daughter's future development.
My 2 Year Old was just diagnosed with LC :(
Camryn's Enterolab Results are in!
Hi everyone - update on Camryn
And here's an update made 3 years after Camryn's mother joined this discussion board:
Hi everyone - it has been a while!
As far as I am aware, Camryn is still a healthy, happy young lady, and she is now 9 1/2 years old, and doing well by sticking to a safe diet.
Please be aware that failure to thrive in a child is virtually always due to undiagnosed gluten sensitivity. The primitive blood tests used by physicians are not capable of detecting the type of gluten sensitivity that is associated with LC. 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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angel_babez1988
- Posts: 3
- Joined: Thu Aug 20, 2015 1:38 pm
- Location: derbyshire
thank you everyone. i question if sophie the youngest to be daignosed with this at 15months. ive been in contact with camyrns mommy and been emailing each other thanks. she was tested for ceoliac as that what they thought it was when it cam bk LC was a shock to all as this means sophie had this at 10months old as that when bowel n failure to thrive started. ceoliac was negative but sophie recently had a pillcam done which will also show ceoliac. xx
sophie
Keely,
Good for you for being so proactive to try to discover all the information you can about her condition. Please be aware that the celiac tests used by doctors will only detect fully-developed celiac disease. Those tests will only rarely detect the type of gluten sensitivity that is typically associated with LC (because most of us don't have fully-developed celiac disease).
Virtually all of us here are at least as sensitive to gluten as the average celiac, and yet except for the few of us who also have celiac disease, the celiac screening tests used by our doctors will always show negative results when we are tested. The antibodies to gluten are produced in the intestines, not in the blood. And because of that, the officially-approved celiac tests are rarely sensitive enough to show a positive test result unless the patient has been reacting for years. The problem is that most of us have a Marsh score (a measure of small intestinal damage) of 1 or 2, but an official celiac diagnosis requires a Marsh score of at least 3, based on a biopsy analysis under a microscope.
Did you know that the average length of time between the onset of symptoms, and an official diagnosis of celiac disease it still around 9 years in many countries? This is because it can take a long time for the damage to become serious enough to meet the diagnostic criteria for celiac disease, in some cases. All that time, the patient continues to suffer.
The only reliable way that we have found to detect the type of gluten sensitivity that we have, is by means of IgA antibody testing of stool samples. The only lab that does this type of testing is located in Dallas, Texas, but members here from all over the world have successfully tracked down their food sensitivities by ordering tests from that lab.
Tex
Good for you for being so proactive to try to discover all the information you can about her condition. Please be aware that the celiac tests used by doctors will only detect fully-developed celiac disease. Those tests will only rarely detect the type of gluten sensitivity that is typically associated with LC (because most of us don't have fully-developed celiac disease).
Virtually all of us here are at least as sensitive to gluten as the average celiac, and yet except for the few of us who also have celiac disease, the celiac screening tests used by our doctors will always show negative results when we are tested. The antibodies to gluten are produced in the intestines, not in the blood. And because of that, the officially-approved celiac tests are rarely sensitive enough to show a positive test result unless the patient has been reacting for years. The problem is that most of us have a Marsh score (a measure of small intestinal damage) of 1 or 2, but an official celiac diagnosis requires a Marsh score of at least 3, based on a biopsy analysis under a microscope.
Did you know that the average length of time between the onset of symptoms, and an official diagnosis of celiac disease it still around 9 years in many countries? This is because it can take a long time for the damage to become serious enough to meet the diagnostic criteria for celiac disease, in some cases. All that time, the patient continues to suffer.
The only reliable way that we have found to detect the type of gluten sensitivity that we have, is by means of IgA antibody testing of stool samples. The only lab that does this type of testing is located in Dallas, Texas, but members here from all over the world have successfully tracked down their food sensitivities by ordering tests from that lab.
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.