Hi All-
I am stumped as to next step to take to make a little more progress with CC. I've been on strict lamb, turkey, mushy cauliflower and carrot diet with coconut oil for 8 weeks. Cooking up some turkey bone broth right now. Taken Claritin twice daily for 5 weeks and Zantac twice daily for two weeks and still have WD. Frequency is down at least. Doing lots of topical magnesium and Vit D. I'm very sensitive to meds and am nervous about cromolyn sodium as suggested in Tex's book for mast cell issue. Does my situation sound like a mast cell issue? I do not want to try budesinide if at all possible. I'm also 69 years old and there is enough in the book about taking longer to heal if you're older. (So much for those "golden years" being golden! :-))
I'm also losing weight like crazy, I was thin before diagnosis. It's getting a little scary. I'd love to find a carb that would put a little weight back on me. Grains are out per stool testing,
potatoes are +1 and I'm tempted to try them a few times a week.
You all are my go to resources, many thanks!!
Christina
Advice needed on next step
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christinafriberg
- Adélie Penguin
- Posts: 84
- Joined: Tue Dec 29, 2015 12:13 pm
- Location: oregon
Hi Christina,
I'm 69 years old, like you. I was diagnosed in 2010. Thinking back, being gluten free, dairy free, egg free (just last year) for 3 years, and a lot of tests and fail and error. Together with my diet, my supplements (a lot of magnesium, vitamin D3, all the active forms of B12, B9 and B6, zink, vitamin C) a lot of bone broth and proteins, and also unrefined, unbleached sea salt, I was finally seeing some improvement. I think that the turning point was when I started supplementing with iodine and selenium last month (those two have to go hand in hand) and Kelp. I started out real slowly with iodine (like 1/10th of recommended) and increased real slowly, and my BMs sudddenly became firm and "normal".
I have had so called "normans" since October last year, but the real change and the good feeling - and even firmer/more solid and less frequent BMs - started with the iodine/selenium supplement.
So, maybe some of us also develop a thyroid problem along the way. At least that's what I'm thinking, since the iodine/selenium supplement made the real change. I lost 12 kilos in 2013, but I have only gained 3 kilos since then. But, the weight loss does not bother me at all, as long as I feel good.
Sorry for my English, but I'm a bit tired
All the best,
Lilja
I'm 69 years old, like you. I was diagnosed in 2010. Thinking back, being gluten free, dairy free, egg free (just last year) for 3 years, and a lot of tests and fail and error. Together with my diet, my supplements (a lot of magnesium, vitamin D3, all the active forms of B12, B9 and B6, zink, vitamin C) a lot of bone broth and proteins, and also unrefined, unbleached sea salt, I was finally seeing some improvement. I think that the turning point was when I started supplementing with iodine and selenium last month (those two have to go hand in hand) and Kelp. I started out real slowly with iodine (like 1/10th of recommended) and increased real slowly, and my BMs sudddenly became firm and "normal".
I have had so called "normans" since October last year, but the real change and the good feeling - and even firmer/more solid and less frequent BMs - started with the iodine/selenium supplement.
So, maybe some of us also develop a thyroid problem along the way. At least that's what I'm thinking, since the iodine/selenium supplement made the real change. I lost 12 kilos in 2013, but I have only gained 3 kilos since then. But, the weight loss does not bother me at all, as long as I feel good.
Sorry for my English, but I'm a bit tired
All the best,
Lilja
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Hi Christina,
You're on the right track, but without budesonide to help mask the symptoms while the diet heals the intestines, it can take 6 months to a year or more to accomplish enough healing to see major progress. But long before remission occurs you should heal enough that you will begin to absorb nutrients better so that you should stop losing weight and maybe even slowly begin to be able to gain some weight back. The more food sensitivities we have the longer it seems to take to heal.
And I agree with Lilja that if we react for years before we are able to control the symptoms, we begin to develop all sorts of vitamin and mineral deficiencies, so that certain supplements may make a big difference in how we feel.
You should be able to eat potatoes at least occasionally if they were in the +1 category. Rice is by far the grain that's the least likely to cause symptoms because of its genetics, but whether or not you may be able to eat it depends not only on your test rating for rice, but even more importantly, it depends on your overall score for those 11 antigenic foods. Do you recall what your overall score for those 11 foods was?
You might be able to eat sweet potatoes, because they are not closely related to Irish potatoes.
I agree with you that cromolyn sodium typically does not offer the degree of benefits that is claimed for it. I have no idea why it doesn't work as well as it should, but few people seem to actually have good success with it (at least that seems to be true for the members here who have tried it in the past).
Remember that when we are on a really restricted diet we have to eat as much as we can of the foods that we can eat. IOW, if we don't eat enough to take in enough calories, then we will naturally lose weight. This is especially true for protein because it takes extra protein to heal the digestive system. IMO our body burns about as much energy each day in a futile attempt to heal the inflammation as it would doing light to moderate physical labor. That's why most of us tend to feel so exhausted most of the time, and it's why we have to make sure that we eat enough.
Tex
You're on the right track, but without budesonide to help mask the symptoms while the diet heals the intestines, it can take 6 months to a year or more to accomplish enough healing to see major progress. But long before remission occurs you should heal enough that you will begin to absorb nutrients better so that you should stop losing weight and maybe even slowly begin to be able to gain some weight back. The more food sensitivities we have the longer it seems to take to heal.
And I agree with Lilja that if we react for years before we are able to control the symptoms, we begin to develop all sorts of vitamin and mineral deficiencies, so that certain supplements may make a big difference in how we feel.
You should be able to eat potatoes at least occasionally if they were in the +1 category. Rice is by far the grain that's the least likely to cause symptoms because of its genetics, but whether or not you may be able to eat it depends not only on your test rating for rice, but even more importantly, it depends on your overall score for those 11 antigenic foods. Do you recall what your overall score for those 11 foods was?
You might be able to eat sweet potatoes, because they are not closely related to Irish potatoes.
I agree with you that cromolyn sodium typically does not offer the degree of benefits that is claimed for it. I have no idea why it doesn't work as well as it should, but few people seem to actually have good success with it (at least that seems to be true for the members here who have tried it in the past).
Remember that when we are on a really restricted diet we have to eat as much as we can of the foods that we can eat. IOW, if we don't eat enough to take in enough calories, then we will naturally lose weight. This is especially true for protein because it takes extra protein to heal the digestive system. IMO our body burns about as much energy each day in a futile attempt to heal the inflammation as it would doing light to moderate physical labor. That's why most of us tend to feel so exhausted most of the time, and it's why we have to make sure that we eat enough.
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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christinafriberg
- Adélie Penguin
- Posts: 84
- Joined: Tue Dec 29, 2015 12:13 pm
- Location: oregon
Lilja-Thank you for sharing your healing progress with me. I've been thinking I would need to add iodine at some point but didn't know about the selenium. I've been treated for thyroid
for years and was just diagnosed with Hashimoto's thryroidism. I had a Swedish grandmother and lots of Scandinavian ancestors. I think you English is lovely :-)
Tex-Thank you for the reality check. I'm afraid I'm not very patient with this process some days. I had a score of 41 for the eleven other foods tested. Only beef and white potato
were +1's. Rice was a +2. I'm hoping when allergy season comes to an end in the PNW the WD will improve some. Is there a guideline for fiber consumption? Grams per day
maybe?
Christina
for years and was just diagnosed with Hashimoto's thryroidism. I had a Swedish grandmother and lots of Scandinavian ancestors. I think you English is lovely :-)
Tex-Thank you for the reality check. I'm afraid I'm not very patient with this process some days. I had a score of 41 for the eleven other foods tested. Only beef and white potato
were +1's. Rice was a +2. I'm hoping when allergy season comes to an end in the PNW the WD will improve some. Is there a guideline for fiber consumption? Grams per day
maybe?
Christina
Unfortunately 41 is a relatively high score for that test. It indicates that you may have been reacting to some of those foods for years. A score that high makes any foods in the +2 category a bit iffy, but you might be able to tolerate rice occasionally (but not every day).
There are no set guidelines for fiber because each of has our own personal tolerance limit. It depends on how much intestinal damage we have, the type of fiber, and probably a few other things. Most of us do OK if we either avoid, or at least minimize, foods that are considered to be sources of fiber (high-fiber foods). For example, those of us who can safely eat rice can tolerate white rice, but not brown rice because of the higher fiber content. We can usually tolerate a few well-cooked vegetables such as carrots, or squash, as long as we don't eat too much of them, but we have to peel them because the peel contains most of the fiber in most vegetables that have a peel.
Tex
There are no set guidelines for fiber because each of has our own personal tolerance limit. It depends on how much intestinal damage we have, the type of fiber, and probably a few other things. Most of us do OK if we either avoid, or at least minimize, foods that are considered to be sources of fiber (high-fiber foods). For example, those of us who can safely eat rice can tolerate white rice, but not brown rice because of the higher fiber content. We can usually tolerate a few well-cooked vegetables such as carrots, or squash, as long as we don't eat too much of them, but we have to peel them because the peel contains most of the fiber in most vegetables that have a peel.
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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christinafriberg
- Adélie Penguin
- Posts: 84
- Joined: Tue Dec 29, 2015 12:13 pm
- Location: oregon