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Hello, Since I last posted, I have basically fired my Gastro. He wanted me to eat Gluten for six weeks just so he could get a positive diagnosis even though he seemed confident that is my issue. I'm not willing to do that! Especially since I went to an allergist for this itchy rash I've had on my legs for a year and a half now. The allergist looked closely at it and said, "Have you ever heard of celiac disease?" He was so confident that he said if he had an intern looking at my rash and the intern didn't diagnose it as celiac, he would fire him. So everything seems to point to going gluten free. Which is fine by me! I just want this fixed.
I gave up gluten and have been diligent with the hidden sources---in my hairspray even! Sheesh! And I was doing very well. Things almost seemed to get back to normal. I also gave up dairy. With things going so well, I added back a little dairy to see how I would do. I put a little cheddar cheese in my eggs and didn't have the slightest reaction. So I went back to butter on my rice and toast. I haven't actually drank a glass of milk or anything but I seemed to be doing fine with the small amounts of butter and hard cheeses---parmesan and cheddar.
But I have a question for the ladies out there. Do you find that you have issues with D when you get your period? I got mine a few days ago and was right back to instant D. My second day is always the worst for me with cramps and such, but before having MC, I didn't get D with my period. I'm trying to figure out if it's my period or if I ate something to trigger it. I did have a few Cadbury Mini-Eggs the night before this started. I had read that they were Gluten-Free, but now I'm suspicious. Or I could be reacting to some of those terrible dyes and things in them. Or maybe it's the dairy catching up to me?
I'm nervous because I am leaving for a conference on Friday. I am praying this is under control by then. We are sharing a hotel room with some close friends to cut costs and now I'm wishing we would have gotten our own rooms! I will be investing in some air freshener for the bathroom for sure!
Thanks for all your wisdom! It's so comforting to know there are people out there who REALLY understand :)
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Hi Melanie,
Sorry you're having issues again! Yes, sometimes my cycle does seem to make the digestive symptoms worse, but in this case I would be more likely to attribute it to something you ate. If you had been dairy-free long enough for any antibodies to die off, then the first time you had dairy, you might not have a noticeable reaction--BUT you would start building up antibodies again, and over time the reaction would get stronger. Also, those Cadbury eggs have so many "unknowns" in them, I would be suspicious. (I had a similar experience last week with some candy that should have been safe, but obviously was not for me!) Hopefully if you pull back to the "basics" for a few days, things will start to improve. Hope you're feeling better by trip time!
Sorry you're having issues again! Yes, sometimes my cycle does seem to make the digestive symptoms worse, but in this case I would be more likely to attribute it to something you ate. If you had been dairy-free long enough for any antibodies to die off, then the first time you had dairy, you might not have a noticeable reaction--BUT you would start building up antibodies again, and over time the reaction would get stronger. Also, those Cadbury eggs have so many "unknowns" in them, I would be suspicious. (I had a similar experience last week with some candy that should have been safe, but obviously was not for me!) Hopefully if you pull back to the "basics" for a few days, things will start to improve. Hope you're feeling better by trip time!
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Thanks for your quick reply! I try not to get frustrated when things are going well and then I end up back at square one, but it is disheartening. So what you're saying is, it COULD be the dairy. I had given up dairy for 3 weeks. How much time do you give it when you introduce foods back in to determine whether it's a problem or not? I had read that dairy reactions if not within minutes of consuming it you should react within a couple of days. Is this not true then?
I picked up some Immodium. I've never taken it before, but I want to be sure all is well for my 2 day conference. I don't know how you guys who work outside the home do it! It's days like today I am so grateful that I am able to work from home. (well, if you call homeschooling and a small ebay business work!)
Also, those of you who are doing well....you're really doing well? It IS possible to get over this, right? I seem to be on this pattern of doing great for a couple of weeks and then something triggers D and I have to start all over again. I just question whether or not I will ever be able to heal when I keep having episodes. This time it's the worst it's been and I know my anxiety is probably playing into it. I have some Lorazepam to take as needed and I haven't needed for a really long time. But, do you think it's safe to take it if I need to this weekend? Or can it possibly trigger another attack? I don't want to take risks, but if it will help I'd like to be able to take it.
And do you just believe companies when they say their stuff is "Gluten-Free"? Like the GF cereals? Rice Chex and so forth? Also Hormel has a natural line of lunch meat that claims to be GF---but listed is natural flavors. Makes me nervous!
Sorry for all the random questions! Some day I'll get this all figured out!
Melanie
I picked up some Immodium. I've never taken it before, but I want to be sure all is well for my 2 day conference. I don't know how you guys who work outside the home do it! It's days like today I am so grateful that I am able to work from home. (well, if you call homeschooling and a small ebay business work!)
Also, those of you who are doing well....you're really doing well? It IS possible to get over this, right? I seem to be on this pattern of doing great for a couple of weeks and then something triggers D and I have to start all over again. I just question whether or not I will ever be able to heal when I keep having episodes. This time it's the worst it's been and I know my anxiety is probably playing into it. I have some Lorazepam to take as needed and I haven't needed for a really long time. But, do you think it's safe to take it if I need to this weekend? Or can it possibly trigger another attack? I don't want to take risks, but if it will help I'd like to be able to take it.
And do you just believe companies when they say their stuff is "Gluten-Free"? Like the GF cereals? Rice Chex and so forth? Also Hormel has a natural line of lunch meat that claims to be GF---but listed is natural flavors. Makes me nervous!
Sorry for all the random questions! Some day I'll get this all figured out!
Melanie
Melanie,
About 90% of us are sensitive to casein. Why take chances? If you're in a flare, and you want to get out of it, cut out all the suspect foods, and don't look back. That's much easier than running to the bathroom every 10 minutes. After you've been in stable remission for several months, then it may be safe to experiment with foods that you're not sure of. If you have an important conference coming up, ditch the dairy, and fiddle with it later. If you want to increase the odds of the conference going smoothly, cut out all products that contain soy, also, and then experiment with them later, when you don't have to be out and about.
A very high percentage of commercial processed foods have cross-contamination problems. It's best to just avoid them, unless you like to live dangerously.
Tex
About 90% of us are sensitive to casein. Why take chances? If you're in a flare, and you want to get out of it, cut out all the suspect foods, and don't look back. That's much easier than running to the bathroom every 10 minutes. After you've been in stable remission for several months, then it may be safe to experiment with foods that you're not sure of. If you have an important conference coming up, ditch the dairy, and fiddle with it later. If you want to increase the odds of the conference going smoothly, cut out all products that contain soy, also, and then experiment with them later, when you don't have to be out and about.
A very high percentage of commercial processed foods have cross-contamination problems. It's best to just avoid them, unless you like to live dangerously.
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.
You're right, Tex. I am NOT a chance-taker at all! My original thought had been to introduce dairy early enough (I thought I would react within minutes to a day) where I would know for sure what I could/couldn't eat while away from home. With hindsight being 20/20, I can see that wasn't the best idea. I should have just waited until afterwards. Plus, I think I really believed dairy wasn't a problem.
I will definitely follow your advice and cut it all out---gluten, dairy & soy. I will make sure I'm doing well for a couple of months before I add anything back in.
I am wanting to do the Enterolab tests as soon as I can afford it. I know you can be without gluten in your diet for a year and it will still detect it if you're sensitive. Is it the same with dairy and soy and all the other possible allergies? Or do I need to have those in my diet for them to be accurate?
I will definitely follow your advice and cut it all out---gluten, dairy & soy. I will make sure I'm doing well for a couple of months before I add anything back in.
I am wanting to do the Enterolab tests as soon as I can afford it. I know you can be without gluten in your diet for a year and it will still detect it if you're sensitive. Is it the same with dairy and soy and all the other possible allergies? Or do I need to have those in my diet for them to be accurate?
Gluten antibodies have a very long half-life, but the other antibodies all tend to die away much faster. Sometimes they can be detected several months after cutting them out of the diet, (if your antibody level was high enough, to begin with), but just in case the antibody levels are not that high, the safest policy is to collect the sample at least within several weeks of eliminating those foods from the diet.Melanie wrote:I know you can be without gluten in your diet for a year and it will still detect it if you're sensitive. Is it the same with dairy and soy and all the other possible allergies? Or do I need to have those in my diet for them to be accurate?
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.
Hi Melanie,
I can respond to several questions. From age 35 to 50 I got soft squishy stool b/f period so much that I could always tell I was getting period in 2 days. Your recent relapse was probably due to cadbury egg problems made worse by period hormonal fluctuations. This is just a thought.
Agree with TEx...kick the dairy to the curb. I was in huge denial re: yogurt. Maybe it was due to all of those Jamie Lee Curtis commercials about the health benefits. When I eliminated dairy my stool went to once a day from about 5 times per day of unpredictability. Gas went down a lot too. I think the fact that I was stuck on yogurt delayed my healing by about 3 months. Suggest use earth balance soy free or clarified butter mentioned here recently.
Yes, it is possible to get over this! I've found eating a fairly narrow, safe diet during healing mode helps. Suggest stick with a safe diet for awhile and get better. I'm slow to test/add foods back in. For example I tested cashews today and nuts are still problematic for me so I'll restest in 3 months. If something is triggering D you are probably having some type of food contamination or food sensitivity issues.
Yes, am I doing really well? Yes. I still have a ways to go. My energy levels are about 80% of what they were pre CC but that is a huge improvement of the 40% energy levels that I had for months on end. Last week I booked two last minute airline tickets. The only flights I could get departed at 5:30 am. This meant getting up at 4:00 and being at the airport at 4:30 am. Early mornings are no longer an issue for me. I have one bowel movement per day and it is a "non event." I think a lot of people stop posting b/c they get better.
You should be ok taking package label instructions of immodium. Also note you can cut the pills in half. It won't "heal" you but it will temporarily stop D.
Yes I have taken 1/4 pill, of smallest dose of Lorazapam on the market, several times over the past year. It did not cause flare or make flare worse. It did make me feel really lousy I think perhaps because I was so run down from our illness. I told the boyfriend I was going to stay away from it as it made me feel so lousy. Some other stress reduction options: take a walk outside or meditation/prayer with deep breathing.
In general foods like rice, white potatos and sweet potatos are probably safer than manufactured products. (Yes, I do eat the occasional packaged item.)
Have fun at your conference! As a general rule I find I do fairly well when I'm out of town.
Brandy
I can respond to several questions. From age 35 to 50 I got soft squishy stool b/f period so much that I could always tell I was getting period in 2 days. Your recent relapse was probably due to cadbury egg problems made worse by period hormonal fluctuations. This is just a thought.
Agree with TEx...kick the dairy to the curb. I was in huge denial re: yogurt. Maybe it was due to all of those Jamie Lee Curtis commercials about the health benefits. When I eliminated dairy my stool went to once a day from about 5 times per day of unpredictability. Gas went down a lot too. I think the fact that I was stuck on yogurt delayed my healing by about 3 months. Suggest use earth balance soy free or clarified butter mentioned here recently.
Yes, it is possible to get over this! I've found eating a fairly narrow, safe diet during healing mode helps. Suggest stick with a safe diet for awhile and get better. I'm slow to test/add foods back in. For example I tested cashews today and nuts are still problematic for me so I'll restest in 3 months. If something is triggering D you are probably having some type of food contamination or food sensitivity issues.
Yes, am I doing really well? Yes. I still have a ways to go. My energy levels are about 80% of what they were pre CC but that is a huge improvement of the 40% energy levels that I had for months on end. Last week I booked two last minute airline tickets. The only flights I could get departed at 5:30 am. This meant getting up at 4:00 and being at the airport at 4:30 am. Early mornings are no longer an issue for me. I have one bowel movement per day and it is a "non event." I think a lot of people stop posting b/c they get better.
You should be ok taking package label instructions of immodium. Also note you can cut the pills in half. It won't "heal" you but it will temporarily stop D.
Yes I have taken 1/4 pill, of smallest dose of Lorazapam on the market, several times over the past year. It did not cause flare or make flare worse. It did make me feel really lousy I think perhaps because I was so run down from our illness. I told the boyfriend I was going to stay away from it as it made me feel so lousy. Some other stress reduction options: take a walk outside or meditation/prayer with deep breathing.
In general foods like rice, white potatos and sweet potatos are probably safer than manufactured products. (Yes, I do eat the occasional packaged item.)
Have fun at your conference! As a general rule I find I do fairly well when I'm out of town.
Brandy
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
Melanie,
Something else I am learning through this process is that healing is SLOW! This is particularly true for healing from gluten damage, especially if you have true celiac disease (in which case you must be extremely cautious even about cross-contamination, since it can be life-threatening). My mom has a friend who is celiac, diagnosed a year and a half ago, and she says she is just now beginning to feel normal again. I'm finding this is going to take months - maybe a year or more - and is likely to get worse before it gets better, as my body continues to find new irritants to attack, until it has finally rooted out everything that irritates it.
So I'd just encourage you not to give up, but also not to try to add in anything you've weeded out that seems to have helped, for a long time yet. Be content that you are feeling better, and make any dietary changes very, very slowly. My nutritionist is telling I should test anything new for a full week before trying something else new. Of course this doesn't apply to gluten, which will probably never be an option for me again, and it doesn't apply to dairy or to soy until I'm confident I've been in remission for months, because so many with MC have severe issues with these. For the time being, I consider myself to be in "weeding-out" mode, trying to find all the things my body doesn't like and getting them out of my system. There will be time enough for adding back in later.
And yes, I know how discouraging that can be. I've been working on this since Thanksgiving and on my good days I feel like I've seen about 50% improvement. On my bad days I am as bad as I ever was. Fortunately this group is here to help support us through those dark days, and remind us that 50% improvement some days is better than where we were, gradually getting worse with no hope in sight. Now at least we have Tex, and Polly, and others who have made it to remission or close and will give us the encouragement we need to get their.
Hugs!
Deanna
Something else I am learning through this process is that healing is SLOW! This is particularly true for healing from gluten damage, especially if you have true celiac disease (in which case you must be extremely cautious even about cross-contamination, since it can be life-threatening). My mom has a friend who is celiac, diagnosed a year and a half ago, and she says she is just now beginning to feel normal again. I'm finding this is going to take months - maybe a year or more - and is likely to get worse before it gets better, as my body continues to find new irritants to attack, until it has finally rooted out everything that irritates it.
So I'd just encourage you not to give up, but also not to try to add in anything you've weeded out that seems to have helped, for a long time yet. Be content that you are feeling better, and make any dietary changes very, very slowly. My nutritionist is telling I should test anything new for a full week before trying something else new. Of course this doesn't apply to gluten, which will probably never be an option for me again, and it doesn't apply to dairy or to soy until I'm confident I've been in remission for months, because so many with MC have severe issues with these. For the time being, I consider myself to be in "weeding-out" mode, trying to find all the things my body doesn't like and getting them out of my system. There will be time enough for adding back in later.
And yes, I know how discouraging that can be. I've been working on this since Thanksgiving and on my good days I feel like I've seen about 50% improvement. On my bad days I am as bad as I ever was. Fortunately this group is here to help support us through those dark days, and remind us that 50% improvement some days is better than where we were, gradually getting worse with no hope in sight. Now at least we have Tex, and Polly, and others who have made it to remission or close and will give us the encouragement we need to get their.
Hugs!
Deanna
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draperygoddess
- Rockhopper Penguin
- Posts: 558
- Joined: Mon Aug 29, 2011 6:49 am
- Location: Tennessee
Melanie,
Yes, it DOES get better! You're in the most frustrating period right now: you eliminate something, feel better for awhile, then something else rears its head or you accidentally eat something you shouldn't and you're back to square one. Hang in there! Some of us have waited as long as two years to reintroduce foods--you want to make sure you've given yourself time to heal first. Dairy was harder for me to give up than gluten--so many things I love have dairy in them--but I know now it's not for me. Recently I discovered that, even if it doesn't cause D, dairy can give me other problems, so it's not worth it.
I agree with what's been said above: cut way back to just a few "safe" foods, and deal with the others after you get back. I have found that if I can get the D under control, my anxiety level is much better. Keep in mind that some of your trigger foods can also cause psychological symptoms. Gluten makes me depressed and lethargic. Immodium is my "go-to" when I have a flare--I don't take it unless I really need it, because it tends to send me the other way and I get C, but it's effective in controlling the D. I keep a small bottle in my purse (a holdover from the pre-GF days when I never knew where I'd be when the D hit).
The thing about this disease is that it's not static. It changes from month to month, year to year, some things improve, some get worse, and we have to continually play the detective and figure out how to stay well. It's challenging, but it can be done! I credit this forum with everything I know about my condition, and I always know there are people here who will encourage me.
Yes, it DOES get better! You're in the most frustrating period right now: you eliminate something, feel better for awhile, then something else rears its head or you accidentally eat something you shouldn't and you're back to square one. Hang in there! Some of us have waited as long as two years to reintroduce foods--you want to make sure you've given yourself time to heal first. Dairy was harder for me to give up than gluten--so many things I love have dairy in them--but I know now it's not for me. Recently I discovered that, even if it doesn't cause D, dairy can give me other problems, so it's not worth it.
I agree with what's been said above: cut way back to just a few "safe" foods, and deal with the others after you get back. I have found that if I can get the D under control, my anxiety level is much better. Keep in mind that some of your trigger foods can also cause psychological symptoms. Gluten makes me depressed and lethargic. Immodium is my "go-to" when I have a flare--I don't take it unless I really need it, because it tends to send me the other way and I get C, but it's effective in controlling the D. I keep a small bottle in my purse (a holdover from the pre-GF days when I never knew where I'd be when the D hit).
The thing about this disease is that it's not static. It changes from month to month, year to year, some things improve, some get worse, and we have to continually play the detective and figure out how to stay well. It's challenging, but it can be done! I credit this forum with everything I know about my condition, and I always know there are people here who will encourage me.
Cynthia
"Can we fix it? YES WE CAN!" -Bob the Builder
"Can we fix it? YES WE CAN!" -Bob the Builder
Hi Melanie. Yes, I have noticed my stools getting softer right before my period! It's due to hormones.... but I'm on Entocort, so I don't get to full on D now when it comes. Everyone here seems to know a lot. Once you say good bye to a protein food, you probably shouldn't look back for a long time. I started my journey one month after you and I really feel like I am only at the beginning. Hang in there.... oh ,and lighting a match in the bathroom works wonders- and is very portable :)
Leah
Leah