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Hi, I'm new here. My 11 year old son has been casein, gluten, soy, corn free and low phenol for 8 years. He still developed a leaky gut and complicated yeast and immune issues. Lots of intervention, not improvement. At age 10 his pain (mostly G.I.) was much worse and signs of environmental allergies along with food sensitivities increased. Major constipation issues as side effect of a medication. Used miralax for several months which drove oxalates through the roof. Scoped and found lymphocetic colitis and motility issues. Found he could not eat most foods esp. phenols (even low), amines, salicylates without bright red ears and slamming himself in the forehead. Had to reduce his diet to very little to avoid phenol reaction and digestive pain and oxalate pain. Treated l.c. with Gastrochrom until the severe headaches (side effect of med) made it impossible. Gastrocrom helped with motility issues, not sure how much with inflammation though. Skin testing shows allergies to trees, grasses and plants which he did not have several years ago when tested. Immune panels show low IGA and IGG3 and high IGE. G.I. doctor says his immune system is attacking itself. Currently on Prednisone. Want to get to the core issues and how to treat esp. as naturally as possible. Tye has autism as a result of biomedical issues and cannot communicate what he's experiencing verbally.
It seems strange that he has developed this issues despite being gluten free for so long. Maybe not. I'm new to all this and trying to give him a soothing diet within all the dietary restrictions die to the phenol and now oxalate issues.
I appreciate you reading this long post. Just looking to put the pieces together.
Thanks,
Carole
developed l.c. even though g/f
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Carole,
Welcome to our internet family. I'm very sorry to hear that your son has so many issues, but I can certainly empathize with him, because my immune system has recently added additional major allergy issues, also, even though I have been GF for almost 7 years. Interestingly, like your son, I am now very sensitive to tree pollen, and possibly other springtime triggers, which were never a factor, up until a couple of years ago, and they seem to be progressively worse every year, now that they have surfaced.
Unfortunately, being GF is not protective of MC, (though it may help). While it is true that a gene predisposing to gluten sensitivity is almost always triggered at the same time that a gene predisposing to MC is triggered, the reverse is not always true, and many other events, (other than gluten sensitivity), can trigger MC. Such events include, (but are certainly not limited to), enteritis due to parasites, bacterial or viral infections, (some suspect that severe stress may be a trigger, or a co-trigger), various medications, (including NSAIDs, certain PPIs, certain SSRIs, etc.), and other events that wouldn't apply in your son's case, (such as stopping a long-term smoking habit). Some of us know what probably triggered our MC, and some do not. In my case, I believe that it was the leaky gut syndrome, due to too much sugar in my diet, but that's just a guess, of course.
When I read your post, I immediately suspected that mast cells in the epithelia of the intestines may be a major influence on the MC symptoms, but Gastrocrom is presumably the best treatment for that, and since you've already tried it, and found that the side effects are intolerable, that takes away one of the few tools that we had available for that purpose. A low histamine diet might help, but the problem is that your son's diet is already so restricted that it may be very difficult to make many changes, and still allow good nutrition. We have recently been discussing overactive mast cells in the gut, and how to treat this condition, but unfortunately, there seems to be very little research out there, which offers any clues pertaining to effective, (and practical), treatments.
One clue as to why your son developed MC may lie in the fact that salicylates are a subgroup of phenol, and salicylates are one of the three types of NSAIDs, and NSAIDs are one of the main causes of MC. IOW, his phenol and salicylate hypersensitivity may have contributed to a predisposition to MC.
Was the Prednisone prescribed to treat the MC, or the allergy symptoms? The reason I ask, is because the long-term effects of Prednisone treatment are not pleasant, and even withdrawal can be a real problem, since it takes over the body's adrenal functions, and the body becomes dependent on it. If it was prescribed to treat the MC, there is a much better choice, for most people - Entocort EC. Entocort is, for all practical purposes, just as effective as Prednisone, for treating IBDs, but without most of the Draconian side effects, and without the long-term risks of Prednisone, since only about 10 to 15 % of the active ingredient, budesonide, is absorbed into the bloodstream. IOW, it is encapsulated, so that it doesn't become activated until it reaches the lower third of the small intestine, and the colon.
You obviously have a very challenging situation to deal with, and I hope that we can help you to sort things out.
Again, welcome aboard,
Tex (Wayne)
Welcome to our internet family. I'm very sorry to hear that your son has so many issues, but I can certainly empathize with him, because my immune system has recently added additional major allergy issues, also, even though I have been GF for almost 7 years. Interestingly, like your son, I am now very sensitive to tree pollen, and possibly other springtime triggers, which were never a factor, up until a couple of years ago, and they seem to be progressively worse every year, now that they have surfaced.
Unfortunately, being GF is not protective of MC, (though it may help). While it is true that a gene predisposing to gluten sensitivity is almost always triggered at the same time that a gene predisposing to MC is triggered, the reverse is not always true, and many other events, (other than gluten sensitivity), can trigger MC. Such events include, (but are certainly not limited to), enteritis due to parasites, bacterial or viral infections, (some suspect that severe stress may be a trigger, or a co-trigger), various medications, (including NSAIDs, certain PPIs, certain SSRIs, etc.), and other events that wouldn't apply in your son's case, (such as stopping a long-term smoking habit). Some of us know what probably triggered our MC, and some do not. In my case, I believe that it was the leaky gut syndrome, due to too much sugar in my diet, but that's just a guess, of course.
When I read your post, I immediately suspected that mast cells in the epithelia of the intestines may be a major influence on the MC symptoms, but Gastrocrom is presumably the best treatment for that, and since you've already tried it, and found that the side effects are intolerable, that takes away one of the few tools that we had available for that purpose. A low histamine diet might help, but the problem is that your son's diet is already so restricted that it may be very difficult to make many changes, and still allow good nutrition. We have recently been discussing overactive mast cells in the gut, and how to treat this condition, but unfortunately, there seems to be very little research out there, which offers any clues pertaining to effective, (and practical), treatments.
One clue as to why your son developed MC may lie in the fact that salicylates are a subgroup of phenol, and salicylates are one of the three types of NSAIDs, and NSAIDs are one of the main causes of MC. IOW, his phenol and salicylate hypersensitivity may have contributed to a predisposition to MC.
Was the Prednisone prescribed to treat the MC, or the allergy symptoms? The reason I ask, is because the long-term effects of Prednisone treatment are not pleasant, and even withdrawal can be a real problem, since it takes over the body's adrenal functions, and the body becomes dependent on it. If it was prescribed to treat the MC, there is a much better choice, for most people - Entocort EC. Entocort is, for all practical purposes, just as effective as Prednisone, for treating IBDs, but without most of the Draconian side effects, and without the long-term risks of Prednisone, since only about 10 to 15 % of the active ingredient, budesonide, is absorbed into the bloodstream. IOW, it is encapsulated, so that it doesn't become activated until it reaches the lower third of the small intestine, and the colon.
You obviously have a very challenging situation to deal with, and I hope that we can help you to sort things out.
Again, welcome aboard,
Tex (Wayne)
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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faithberry
- Adélie Penguin
- Posts: 246
- Joined: Wed Mar 04, 2009 7:40 am
Hi Carole,
Glad you were able to connect.
You probably don't want to go back to Gastrocrom, but just wanted to let you know that I'm trying to ease into it myself. My doctor underlined that you have to start with small doses and gradually increase. I've started with half an ampule 1x a day for 2 days, then 2x a day for 2 days. I can't tolerate a full ampule. I know one woman who had headaches with 4 ampules 4x a day but was OK when she cut back to 2. Going slow is very important or it can set off the mast cells.
Ketotifen is another mast cell stabilizer but it has corn starch (in Europe) but maybe you could have it compounded.
Entorcort is another good option as Tex pointed out.
Maybe Tye needs prednisone now cause the situation is intense, but these other drugs might be safer when it's time to make a change.
You and Tye are in my prayers. Faith
Glad you were able to connect.
You probably don't want to go back to Gastrocrom, but just wanted to let you know that I'm trying to ease into it myself. My doctor underlined that you have to start with small doses and gradually increase. I've started with half an ampule 1x a day for 2 days, then 2x a day for 2 days. I can't tolerate a full ampule. I know one woman who had headaches with 4 ampules 4x a day but was OK when she cut back to 2. Going slow is very important or it can set off the mast cells.
Ketotifen is another mast cell stabilizer but it has corn starch (in Europe) but maybe you could have it compounded.
Entorcort is another good option as Tex pointed out.
Maybe Tye needs prednisone now cause the situation is intense, but these other drugs might be safer when it's time to make a change.
You and Tye are in my prayers. Faith
Faith
LC (in remission)
LC (in remission)
Hi Carole,
I just had ketotifen compounded for myself. The pharmacist himself has had all kinds of allergies and used this himself and the only side effect he experienced was drowsiness. The drug has been used for decades in Europe with children. I start this medication next week and can let you know how I do. Take care.
Love,
Cristi
I just had ketotifen compounded for myself. The pharmacist himself has had all kinds of allergies and used this himself and the only side effect he experienced was drowsiness. The drug has been used for decades in Europe with children. I start this medication next week and can let you know how I do. Take care.
Love,
Cristi
Carole,
You say Diflucan was the worst. You mean he had a lot of side effects? I am taking Diflucan right now and at the beginning I had die off effects. I felt like I had the flu, one night I itched all over, and of course lots of D. They told me this meant the drug was working. They had me taking Tums to counteract the die off. Was Tye also on a yeast free diet at the same time? How long did he take it? I don't think Diflucan is the answer but just another piece of the puzzle, at least for me. I'm keeping you and Tye in my prayers.
Pat
You say Diflucan was the worst. You mean he had a lot of side effects? I am taking Diflucan right now and at the beginning I had die off effects. I felt like I had the flu, one night I itched all over, and of course lots of D. They told me this meant the drug was working. They had me taking Tums to counteract the die off. Was Tye also on a yeast free diet at the same time? How long did he take it? I don't think Diflucan is the answer but just another piece of the puzzle, at least for me. I'm keeping you and Tye in my prayers.
Pat
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faithberry
- Adélie Penguin
- Posts: 246
- Joined: Wed Mar 04, 2009 7:40 am
Carole,
Reading your description of Tye’s situation sounds like it might be mastocytosis or mast cell activation disorder, which I mentioned once before in my email to you. I forgot to mention mastokids, link below. ‘Spots’ are the more common form of masto in kids, but some have mastocytosis without urticaria pigmentosa and some probably have mast cell activation disorder. Masto illnesses are not necessarily IgE mediated, but some people with the illness do have elevated IgE.
www.mastokids.org/index.php
An easy non-invasive marker for this is total serum tryptase. If your doctor hasn’t done this already, you might request that it be done. It seems like you would definitely want to rule this possibility out or in. It’s rare so your doctor may not know of it or think of it. Your doctor sounds quite on the ball. The treatment would be similar, but you might want to have your doctor consult with an expert (there are only an handful in the U.S.) and you could find out about it by contacting The Mastocytosis Society, I gave you that website before.
In terms of LC, what I’ve observed with people on the forum is that when they are first diagnosed, often there is very little they can eat. They don’t do well with many vegetables and fiber foods and the veggies have to be cooked really soft. Most people can tolerate (white) rice. Tex often points out that it takes a long time to heal the gut in this disease. Even after people achieve remission of D., it seems like ti can take several years to start eating a wider menu. Maybe others could tell you more about their experience that way.
BTW, I have C so I am not convinced that D is the only symptoms in that regard of LC. I did have mild D in the beginning.
Reading your description of Tye’s situation sounds like it might be mastocytosis or mast cell activation disorder, which I mentioned once before in my email to you. I forgot to mention mastokids, link below. ‘Spots’ are the more common form of masto in kids, but some have mastocytosis without urticaria pigmentosa and some probably have mast cell activation disorder. Masto illnesses are not necessarily IgE mediated, but some people with the illness do have elevated IgE.
www.mastokids.org/index.php
An easy non-invasive marker for this is total serum tryptase. If your doctor hasn’t done this already, you might request that it be done. It seems like you would definitely want to rule this possibility out or in. It’s rare so your doctor may not know of it or think of it. Your doctor sounds quite on the ball. The treatment would be similar, but you might want to have your doctor consult with an expert (there are only an handful in the U.S.) and you could find out about it by contacting The Mastocytosis Society, I gave you that website before.
In terms of LC, what I’ve observed with people on the forum is that when they are first diagnosed, often there is very little they can eat. They don’t do well with many vegetables and fiber foods and the veggies have to be cooked really soft. Most people can tolerate (white) rice. Tex often points out that it takes a long time to heal the gut in this disease. Even after people achieve remission of D., it seems like ti can take several years to start eating a wider menu. Maybe others could tell you more about their experience that way.
BTW, I have C so I am not convinced that D is the only symptoms in that regard of LC. I did have mild D in the beginning.
Faith
LC (in remission)
LC (in remission)