Good morning!
I'm new to this group, my son who is 7 was just diagnosed with lymphocytic colitis. We thought he had celiac but when the biopsies didn't look right and its wasn't celiac, they looked further and found this. I'm trying to find all the info I can about this but there doesn't seem to be a lot. I'm so happy I have found this group and am hoping to learn as much as I can. They have started him on a steroid, it starts with a b. I have seen the name before in this group.
His life at times is so limited by his symptoms ...
New here!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome to our Internet family. I feel your son's pain. This can be a very debilitating disease for anyone of any age, and it's especially cruel for kids.
The medication your son is taking is probably budesonide. Budesonide is one of the most effective medications prescribed to treat MC. Please be aware, however, that MC can be controlled by diet changes that are far, far safer for long-term health than the medications that are typically prescribed to treat this disease. For growing kids especially, good bone health is very important. As you are probably aware, corticosteroids are associated with the development of osteoporosis if they are used for an extended period. And medications will not "cure" MC. Soon after a patient stops taking the medication, the symptoms will relapse in most cases.
If you do enough reading on this site, you will discover that the only reliable long-term solution is diet changes, unless a patient is willing to take a medication for the rest of her or his life. And for many patients, the medications do not bring complete resolution of symptoms unless the patient at least avoids his or her major food sensitivities while taking the medication. You might be interested in the information contained in the old thread at the following link, where the mother of a two year-old girl resolved her daughter's MC symptoms by making changes in her diet. The thread is 7 pages long, but it contains some very useful information.
My 2 Year Old was just diagnosed with LC :(
Most of us here got our life back by making diet changes, even though many/most GI specialists still deny that diet has any affect on MC.
Is the budesonide doing the job yet? If it doesn't bring remission within a week or so it may be necessary to eliminate gluten from your son's diet. Research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered. And the type of gluten sensitivity that we have is not detected by the celiac blood tests used by doctors, despite doctor's claims to the contrary. Some of us produce so many antibodies from certain foods that the inflammation is generated faster than the budesonide can suppress it.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet family. I feel your son's pain. This can be a very debilitating disease for anyone of any age, and it's especially cruel for kids.
The medication your son is taking is probably budesonide. Budesonide is one of the most effective medications prescribed to treat MC. Please be aware, however, that MC can be controlled by diet changes that are far, far safer for long-term health than the medications that are typically prescribed to treat this disease. For growing kids especially, good bone health is very important. As you are probably aware, corticosteroids are associated with the development of osteoporosis if they are used for an extended period. And medications will not "cure" MC. Soon after a patient stops taking the medication, the symptoms will relapse in most cases.
If you do enough reading on this site, you will discover that the only reliable long-term solution is diet changes, unless a patient is willing to take a medication for the rest of her or his life. And for many patients, the medications do not bring complete resolution of symptoms unless the patient at least avoids his or her major food sensitivities while taking the medication. You might be interested in the information contained in the old thread at the following link, where the mother of a two year-old girl resolved her daughter's MC symptoms by making changes in her diet. The thread is 7 pages long, but it contains some very useful information.
My 2 Year Old was just diagnosed with LC :(
Most of us here got our life back by making diet changes, even though many/most GI specialists still deny that diet has any affect on MC.
Is the budesonide doing the job yet? If it doesn't bring remission within a week or so it may be necessary to eliminate gluten from your son's diet. Research shows that when the genes that predispose to MC are triggered, the genes that predispose to gluten sensitivity are also triggered. And the type of gluten sensitivity that we have is not detected by the celiac blood tests used by doctors, despite doctor's claims to the contrary. Some of us produce so many antibodies from certain foods that the inflammation is generated faster than the budesonide can suppress it.
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.
Thanks Tex! I will defiantly check out the story about the 2 yr old!
They originally scoped my son because they thought he had celiac and it came back negative and now he has this. They are acting like he can eat anything and just take the budesodine, he just started the medicine so haven't seen any results yet. The doctor told me if the med doesn't work they will need to rescope and try something else.
I'm most interested in learning about diets and other remedies to help him. I don't want him on meds long term if I don't have to, he's very young. So I worry how this will effect his life long term. I already know how it's effecting him now, it's not good. He's very uncomfortable
Thanks for the warm welcome!
They originally scoped my son because they thought he had celiac and it came back negative and now he has this. They are acting like he can eat anything and just take the budesodine, he just started the medicine so haven't seen any results yet. The doctor told me if the med doesn't work they will need to rescope and try something else.
I'm most interested in learning about diets and other remedies to help him. I don't want him on meds long term if I don't have to, he's very young. So I worry how this will effect his life long term. I already know how it's effecting him now, it's not good. He's very uncomfortable
Thanks for the warm welcome!
