Hi Everyone,
I've been doing more reading on here and I just can't decide what to do. I seem to be stuck in a cycle. I have a few good days and then a few bad. I feel like I am slowly improving and maybe it just takes more time and I'm being impatient. But I can't understand why I would be almost back to normal and then the next day be back to D again when I haven't changed anything in my diet. I've been keeping a food journal for several months now. I would have to think SOMETHING is setting it off. I can't seem to find any rhyme or reason to it.
My habits have been watery D about once or twice a week randomly. Otherwise, mostly loose or very soft. And usually only once or twice in the morning, but on occasion in the afternoon or evening. Also, I wonder how much of it has to do with nerves. Seems like the watery D hits when I am about to go out somewhere when I'm a bit nervous. I still get occasional gurgling in my tummy as well, and gas.
So I'm toying around with several ideas. One, the GAPS diet. I know it's intense so I'm a bit hesitant. Paleo is another diet I keep reading about, but I am limited on the amount of fruit/veggies I can tolerate. And I still suspect mast cell involvement since I have skin issues and my D is almost always early in the morning. And also because I have acid reflux symptoms that come and go. I saw a post on here about treating mast cells with cromolyn sodium. I am wondering if it would be wise to try it and see if I get any improvement? Then maybe I would know? It couldn't hurt anything, could it? I haven't tried a low histamine diet yet either. I am GF/DF and the only soy I get is in my mayo, but I am going to start making my own with sunflower oil.
I am a bit overwhelmed with options and would appreciate any advice on what I should do! It's a bit scarey doing this alone without the advice of a doctor. I feel like I'm just guessing half the time. I wish I had access to a doctor who knew about these things and could help direct me....
Melanie
Unsure what path to take
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
I suspect when you take the soy out of your diet, you will experience an improvement. Soy is evil, and it seems like it is in everything. You may have done this already, but you may want to check your supplements. Anything that says "vitamin E" is probably soy-based unless it states specifically that it is not. I've even found soy in tea.
I suspect you have mast cell issues, too. I can't afford to do anything about my mast cell issues right now except try to avoid high-histamine foods, so I don't have any good advice on that.
I would encourage you to go Paleo or SCD, or GAPS. I have few fruits or veggies I can eat, too, but I eat mostly Paleo. I do sneak in a little dark soy-free chocolate now and then. Asparagus and apples pretty much do it for me right now, though I do put blueberries and spinach in the Vita-Mix for my morning smoothie and deal with the consequences. I have to have the nutrients in them, especially the magnesium.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Hi Melanie,
I agree with Marliss. Your pattern of symptoms suggests a reaction to something that you are eating with some regularly, but possibly in limited amounts. And most members here who are sensitive to soy tend to react to rather small doses of it.
Treatment decisions are always difficult to make with this disease. Yes, guessing is always worrisome, but remember that we don't have the market cornered on "guessing" The doctors are virtually always guessing when they prescribe a treatment for this disease, and trust me -- your guess will almost always be better than theirs.
To put the concept of "guessing" into a better light, and to acknowledge the status of legitimacy and respect that it deserves, consider this fact:
The most complex mathematical and engineering problems typically cannot be solved by the straightforward use of conventional mathematical equations. If they could be, someone would have already solved them long ago. Instead, the really tough problems have to be solved by making a guess at the solution, and then using conventional mathematical equations to see how close the guess comes to meeting the known mathematical boundary conditions. That first guess almost never works, of course, but by taking advantage of the information provided by a mathematical analysis resulting from that first guess, a much better "educated" guess can be made, and by continuing that process with increasingly-better guesses, eventually a solution can be found.
Because the technique of guessing solutions can lead to solutions of otherwise insolvable problems, IMO, guessing rocks. Never be afraid to make a guess, if that's the best that you can do. From an engineering viewpoint, a bad guess is much better than no guess at all, because it is almost surely the first step toward the solution of a very tough problem. If it works for engineering and related disciplines, it will surely work for medical problems as well.
Guesses are cheap, but they can be very effective, and the best part is that our second guess will almost always be better than the first, so the odds are in our favor.
Tex
I agree with Marliss. Your pattern of symptoms suggests a reaction to something that you are eating with some regularly, but possibly in limited amounts. And most members here who are sensitive to soy tend to react to rather small doses of it.
Treatment decisions are always difficult to make with this disease. Yes, guessing is always worrisome, but remember that we don't have the market cornered on "guessing" The doctors are virtually always guessing when they prescribe a treatment for this disease, and trust me -- your guess will almost always be better than theirs.
To put the concept of "guessing" into a better light, and to acknowledge the status of legitimacy and respect that it deserves, consider this fact:
The most complex mathematical and engineering problems typically cannot be solved by the straightforward use of conventional mathematical equations. If they could be, someone would have already solved them long ago. Instead, the really tough problems have to be solved by making a guess at the solution, and then using conventional mathematical equations to see how close the guess comes to meeting the known mathematical boundary conditions. That first guess almost never works, of course, but by taking advantage of the information provided by a mathematical analysis resulting from that first guess, a much better "educated" guess can be made, and by continuing that process with increasingly-better guesses, eventually a solution can be found.
Because the technique of guessing solutions can lead to solutions of otherwise insolvable problems, IMO, guessing rocks. Never be afraid to make a guess, if that's the best that you can do. From an engineering viewpoint, a bad guess is much better than no guess at all, because it is almost surely the first step toward the solution of a very tough problem. If it works for engineering and related disciplines, it will surely work for medical problems as well.
Guesses are cheap, but they can be very effective, and the best part is that our second guess will almost always be better than the first, so the odds are in our favor.
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 for that perspective. You're absolutely right. At least with guessing I'll know what doesn't work and that will hopefully get me closer to what does.
Marliss, you are probably right. It's time to take the plunge and get rid of all the soy. Looking at my liquid multivitamins---would you assume it has soy if it doesn't specify that it doesn't? It does, of course, have vitamin e. What do you all take for a multi if you can't have vitamin e? With my limited food choices---especially w/my inability to tolerate many fruits or vegetables, I feel better (mentally) to be taking a multivitamin. I'm underweight and worried enough about not getting enough nutrients....
Melanie
Marliss, you are probably right. It's time to take the plunge and get rid of all the soy. Looking at my liquid multivitamins---would you assume it has soy if it doesn't specify that it doesn't? It does, of course, have vitamin e. What do you all take for a multi if you can't have vitamin e? With my limited food choices---especially w/my inability to tolerate many fruits or vegetables, I feel better (mentally) to be taking a multivitamin. I'm underweight and worried enough about not getting enough nutrients....
Melanie
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MBombardier
- Rockhopper Penguin
- Posts: 1523
- Joined: Thu Oct 14, 2010 10:44 am
- Location: Vancouver, WA
I take Vitafusion Multi Vites Gummy Vitamins. It has natural Vitamin E, but says specifically on the label that it does not contain any wheat, milk, eggs, peanuts, or soy.
Marliss Bombardier
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
Dum spiro, spero -- While I breathe, I hope
Psoriasis - the dark ages
Hashimoto's Thyroiditis - Dec 2001
Collagenous Colitis - Sept 2010
Granuloma Annulare - June 2011
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Christine.
- Gentoo Penguin
- Posts: 260
- Joined: Mon Feb 20, 2012 1:15 pm
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Melanie
my advice is listen to your body
what MC does to our bodies is quite unique, we all have slight differences which is why i dont think there is one fixed eating plan that works. Rather than follow a fixed eating plan ie paleo, figure out the ingredients that work for you and stick with them.
Easier said than done i know, it took me about 9 months to do the elmination diet and remove major triggers, at that stage i had an eating plan that was low inflammation and suited budget and lifestyle (namely work), 6 mths later just as i thought i had it sorted, GERD kicked in then histamine issues, i have modified things a bit and now have ingredient/eating plan that works. I hardly ever have to take anti histamines, and the GERD only occurs if i forget the Vit D or sway from the eating plan
my advice is listen to your body
what MC does to our bodies is quite unique, we all have slight differences which is why i dont think there is one fixed eating plan that works. Rather than follow a fixed eating plan ie paleo, figure out the ingredients that work for you and stick with them.
Easier said than done i know, it took me about 9 months to do the elmination diet and remove major triggers, at that stage i had an eating plan that was low inflammation and suited budget and lifestyle (namely work), 6 mths later just as i thought i had it sorted, GERD kicked in then histamine issues, i have modified things a bit and now have ingredient/eating plan that works. I hardly ever have to take anti histamines, and the GERD only occurs if i forget the Vit D or sway from the eating plan
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Melanie,
I can relate to all of the confusion regarding diets. I am new to all of this. I chose the SCD diet just because I came across it on the web, and it seemed to help others. I have no idea if it is the best one to follow. I think I liked that their web page provided me with a 21 page print out of legal and illegal foods. That was a starting point. At that point, I hadn't even found this support group. I was still doing research. This site provides so much information that it is almost overwhelming at first. It is THE BEST SOURCE OF INFORMATION AND SUPPORT!
Started SCD on April 8. Things were going along fairly well until I got lazy. I cheated 2 days in a row and used Hellman's to make chicken salad (after all, it was gluten free). I had a reaction (abd pain). Although it is gluten free, it has soybean oil in it. I must be sensitive to soy and have to eliminate it (along with everything else).
Right now I can only claim 9 days in a row without abd pain or D. Of that time, only 7 days off of my medication (budesonide).
I will continue with my food diary. Based on everything on this site, it is possible to have sensitivities to foods that "ought to be legal". We just have to figure that out.
Best of luck with your detective work to figure out what you can or can't eat! It is a struggle!
Marion
I can relate to all of the confusion regarding diets. I am new to all of this. I chose the SCD diet just because I came across it on the web, and it seemed to help others. I have no idea if it is the best one to follow. I think I liked that their web page provided me with a 21 page print out of legal and illegal foods. That was a starting point. At that point, I hadn't even found this support group. I was still doing research. This site provides so much information that it is almost overwhelming at first. It is THE BEST SOURCE OF INFORMATION AND SUPPORT!
Started SCD on April 8. Things were going along fairly well until I got lazy. I cheated 2 days in a row and used Hellman's to make chicken salad (after all, it was gluten free). I had a reaction (abd pain). Although it is gluten free, it has soybean oil in it. I must be sensitive to soy and have to eliminate it (along with everything else).
Right now I can only claim 9 days in a row without abd pain or D. Of that time, only 7 days off of my medication (budesonide).
I will continue with my food diary. Based on everything on this site, it is possible to have sensitivities to foods that "ought to be legal". We just have to figure that out.
Best of luck with your detective work to figure out what you can or can't eat! It is a struggle!
Marion
Mim18 wrote:
I can relate to all of the confusion regarding diets. I am new to all of this. I chose the SCD diet just because I came across it on the web, and it seemed to help others. I have no idea if it is the best one to follow. I think I liked that their web page provided me with a 21 page print out of legal and illegal foods. That was a starting point. At that point, I hadn't even found this support group. I was still doing research. This site provides so much information that it is almost overwhelming at first. It is THE BEST SOURCE OF INFORMATION AND SUPPORT!
Marion
Marion,
I followed SCD ( a kind of low carb paleo version of my own devising) for a long time and it did help but still left issues. I found this group about 2 months ago when things got really bad. I have figured out since that both dairy and eggs are a problem for me as well as chicken and I was eating all 3 on SCD especially the 24 hour yogurt which I loved. I found testing through Enterolab very helpful. I have also had to cut out high histamine foods, something else I learned about here. It is detective work but well worth it it.
Jean
Would it also be a food intolerance that triggers the GERD? I'm having the worst time with that now. I have so much pressure/pain in my upper chest/neck it hurts to breathe! I know I've only been diagnosed with this condition since February but it feels like it's been FOREVER and I am just so tired of it.....
Sorry, I'm a bit down today. I am supposed to be going out of town for my nephew's graduation but I can't hardly function. It's on my husband's side and I feel such pressure to attend and they just don't understand what I'm going through. No one can know unless you're going through it. I'm afraid they'll think I just don't want to attend.
Melanie
Sorry, I'm a bit down today. I am supposed to be going out of town for my nephew's graduation but I can't hardly function. It's on my husband's side and I feel such pressure to attend and they just don't understand what I'm going through. No one can know unless you're going through it. I'm afraid they'll think I just don't want to attend.
Melanie
Hi Everyone,
As usual I continue learning from everything on this site. I really hope that I am NOT sensitive to eggs. I love eggs! But, I just looked at my food diary (and I make notes on each day if I have abd pain or D), and I guess I would have to consider eggs suspicious. I am now on my 10th good day. Guess what! In the past 10 days I didn't have any whole eggs (just one occasion where I had a small amount that was in a homemade dressing). I will have to pay very close attention to my reactions. I think I might wait another week or two before trying an egg again and see if I notice anything.
After 10 years of Chronic D, it is a real milestone to have 10 good days! That alone motivates me to continue with whatever dietary changes are necessary. Also, my right sided abdominal distention is starting to subside. I think that it might take another 6 months to go down completely. I really had some serious inflammation.
Thanks for all of your help.
Marion
As usual I continue learning from everything on this site. I really hope that I am NOT sensitive to eggs. I love eggs! But, I just looked at my food diary (and I make notes on each day if I have abd pain or D), and I guess I would have to consider eggs suspicious. I am now on my 10th good day. Guess what! In the past 10 days I didn't have any whole eggs (just one occasion where I had a small amount that was in a homemade dressing). I will have to pay very close attention to my reactions. I think I might wait another week or two before trying an egg again and see if I notice anything.
After 10 years of Chronic D, it is a real milestone to have 10 good days! That alone motivates me to continue with whatever dietary changes are necessary. Also, my right sided abdominal distention is starting to subside. I think that it might take another 6 months to go down completely. I really had some serious inflammation.
Thanks for all of your help.
Marion