Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
I was so sad to read in a post yesterday that your MC is flaring again. RATZ! Can you point to anything that might have triggered it? You have had such a go-round with this rotten disease. And yet, as Jo Ann said, you remain upbeat, helpful to others, and never give up. You are truly an inspiration.
Just wanted you to know I am thinking of you and sending healing thoughts. It is no fun being a double DQ1, and I understand completely what you are going through. I know that many here are used to me being in remission, but please rememberr that it wasn't until 7 years after diagnosis that I discovered my final (hopefully) food intolerance. It is a long, difficult, and FRUSTRATING process.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Gloria, my sentiments are the same as Polly's. I am not a DQ1, but I might as well be, and as each day goes by I remind myself that this may take a very long time. Polly gives me hope when she said it took her 7 yrs to find that final intolerance. Anyhow, you are in my thoughts and prayers!
Ginny
PS: I just responded about using Imodium in Ant's thread. I use it and it gives me peace of mind. I am starting to think like your DH!
Polly wrote:I was so sad to read in a post yesterday that your MC is flaring again. RATZ! Can you point to anything that might have triggered it?
It's probably not accurate to call this a flare. I've haven't had consistently normal BMs since February when I went on the chicken-rice elimination diet. In reality, it's been up and down, more down than up. I've been on 9 mg. of Entocort since March, with the exception of about 30 scattered days when I tried going down to 6 mg.
What's making it so tough is my extremely limited selection of foods, lacking any vegetable with significant calories and all fruit. I weigh 92 lbs. and don't want to go any lower.
Most recently I've become suspicious of rice and have eliminated it. I think it has given me itchy head bumps twice in the past month. I let two weeks pass after I first eliminated it and tried again. The itchy head bumps returned that evening and for a few days afterward. However, eliminating rice hasn't improved my BMs and my food choices are even more limited as a result.
I have minimized my mouth sores through diet changes, but haven't noticed an improvement in BMs from that, either. It's almost as if the two conditions aren't related.
I still keep a food/symptom diary and analyze what I eat several times a day. My case is and always has been very complex. I should add that eliminating processed foods hasn't made any difference in my symptoms. You can be sure that I am actively working on my situation and trying to figure it out. If I ever do, I'll happily post what I did.
So far today, things seem improved. Only one BM thus far and it was small pieces with less gas. I have a little hope again.
Gloria
You never know what you can do until you have to do it.
Hi Gloria I'm sorry that you are going through a tougher time with MC. This really does seem to be a fickle disease with the ups and downs. I hope that you are able to stabilize your diet and symptoms soon.
I'm sorry that you have a pretty hard dilemma. You have to choose between treating MC and treating Crohn's, or try to treat both. I don't know what to advise you.
Every time I get frustrated with my situation, I think about my next-door neighbors. They are both in their late 50's. The husband has colon cancer and I believe is under hospice care, meaning he doesn't have long to live. The wife has multiple sclerosis. She gets seizures and isn't able to drive. I don't see either of them outside anymore. I pray for them every day. Luckily their children live in the area and they are helping them. They seem to want their children to help instead of the neighbors.
I still live a pretty normal life. I ride my bike, go shopping, to the water park, and visit my grandchildren. I feel pretty fortunate in comparison to my neighbors.
Gloria
You never know what you can do until you have to do it.
Gloria---not to be sounding like an *echo* but I 2 am sorry to read that U are having some issues----
Doesnt it make U wanna *scream* and say ENUF!!!
I know I did that often---and U are ALLOWED-
Hope things get better for U
luve Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Gloria, I'm so sorry you have had to suffer so much. As I've mentioned before, I too have a problem with chicken. I'm sure that elimination diet was very hard on you. I haven't had chicken in months, but a few days ago I thought I'd try it again just in case something else may have been going on in the past. Well, I paid the price. I had pain and problems that night and all the next day. I seem to be fine with beef and fish. I can even eat Spam without a problem. I know you've tried everything. Have you also eliminated potatoes? I hope you can eat potatoes because they can be very sustaining. I don't know where you are on eliminating rice, but if you can you might try the rice protein to make shakes. I have added coconut oil to my shakes and fry fish in it. I can't prove it, but I think the coconut oil addition to my diet has helped my healing. I feel a little foolish giving you eating ideas because I know you've tried and done it all. I'm still waiting for results from my dr on my cholesterol and cortisol levels. The reason I mention this is because she put me on a prescription fish oil called Lovaza which helps with cholesterol, triglycerides, and inflammation. She put me on this fish oil because 4 capsules are equal to 18 (I think that's the ratio, I think their website gives this information) of the usual fish oils. She was concerned that the fish oil would irritate my gut, so she wanted to minimize the dose with maximum benefit. I've wondered if the fish oil has contributed to my healing because it reduces inflammation. It does contain some soy, but I don't react to it. I've taken it for over a year and wasn't aware of the soy until a few months after I had been on it and by that time I knew it didn't bother me. I'm kind of rambling here, but am just trying to think of some things I've added to my diet and supplements that might help. I really don't think there's one thing that solves the MC problem, it's having a lot of things in your arsenal.
My thoughts and prayers are with you Gloria and I'm just aching for you to find the key for your remission. Love, JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Gluten: What You Don't Know Might Kill You by Mark Hyman MD from Huffington Post
Gluten Sensitivity: One Cause, Many Diseases
Excerpt-
A review paper in The New England Journal of Medicine listed 55 "diseases" that can be caused by eating gluten. (iv) These include osteoporosis, irritable bowel disease, inflammatory bowel disease, anemia, cancer, fatigue, canker sores, (v) and rheumatoid arthritis, lupus, multiple sclerosis, and almost all other autoimmune diseases. Gluten is also linked to many psychiatric (vi) and neurological diseases, including anxiety, depression, (vii) schizophrenia, (viii) dementia, (ix) migraines, epilepsy, and neuropathy (nerve damage). (x) It has also been linked to autism.(ix)
DISCLAIMER: I am not a doctor and don't play one on TV.
Joan,
I haven't been able to convince my diabetic husband to go GF, but I have considered talking to my neighbor when she has some time to chat.
Ginny and JoAnn,
I'm still reeling from the possibility that rice is off-limits. I'll probably try it again soon. If I get head sores again, it's got to go. I don't have much left to eat in the way of starches. The most difficult meal for me is breakfast. I'm sure you can relate because you can't eat eggs, either. They are soft on the gut and nutritious. It sounds like eggs are the standard breakfast for most others here. My situation is compounded by my apparent fructose intolerance. What kind of breakfasts do you have?
JoAnn,
I haven't eaten potatoes since April, when the MRT testing revealed that I was moderately reactive to them. I had also come to that conclusion myself and had been avoiding them. Not being able to eat potatoes, other root vegetables, squash and now rice is what leaves me so calorie-deficient. I bought a couple jars of baby food vegetables that I'm going to try. Perhaps it was the fiber in the fresh foods - who knows? It could also be the fructose in the squash.
Memory and Barbara,
I appreciate your good wishes sent my way. It may be that I'll never overcome this...I'm starting to accept that possibility. I'm still very happy for others that can achieve remission - it's always such a great thrill when they do.
Gloria
You never know what you can do until you have to do it.
Which brand of chicken are you eating? i seriously think i react to Perdue Chicken. They use "all natural" ingredients in the broth added to the meat for moisture. That was their response to my asking if it contained soy...so in otherwords I really wonder what all is in it because they didn't answer the question directly. perhaps some locally grown and not juiced up?
Hope you find how to make yourself feel better!
Katy
I can't eat chicken, but I do purchase Purdue ground turkey and the legs and wings for turkey broth. The ground turkey says it contains turkey and rosemary. I am wondering about the turkey, but I'm not sure about anything I'm eating at this point.
Gloria
You never know what you can do until you have to do it.
If you decide to give rice another go, how about trying a different variety from a different manufacturer? It may have contaminants, or it could be the variety doesn't suit you. For example, basmatic has a lower GI (Glycemic Index) than other rice's. You have the Italian Arborio style rice, or Jasmine, Basmati, glutinous etc. Plenty to choose from.
I find it amazing how much difficulty American's have in finding basic ingredients. The idea of chicken/turkey containing anything at all (even rosemary) still shocks me. It seems so wrong that you can't get just plain unadulterated chook. If they put one thing in, how can you be sure they aren't adding something else? Even accidentally?
You are so strong to keep perservering - but then again the alternatives aren't so flash.
Gloria, I feel so sorry for you. You really struggle with gluten intolerance. I hope you find some answers soon.
And Joe, you really are struggling also. I hope you can find a treatment plan that will help both your MC and Crohns.
It's disheartening to read how you two struggle and don't make progress. I just stopped my typing and said a prayer for the both of you.
I flew to Wisconsin last Wednesday for my sisters 90th birthday party yesterday. I am staying with my daughter. I brought a lot of food along however my daughter understands my situation and has gone out of her way to have GF meals for me. We did eat out three times with family and I keep waiting for a big time reaction to the restaurant food I ate, however, I have had none so far. I leave again Wednesday morning for home. I am so very grateful for my progress and plan on cutting my Entocort back to one a day when I get home.
Since being gone from home, I have kept up with the reading of the new posts every day but have not responded to any of them.
Charlotte
The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
Gloria, breakfast is the toughest. I think I miss bacon and eggs the most, although I was never a breakfast eater except for weekends and that was family time. At this point I am eating rice, no nightshades, which means I eat cream of rice in the morning with a meat. I just added some pecan chips for taste. Let's face it, eating rice is like eating "cardboard" ; I would imagine! At other people's suggestions, I have eliminated a lot of fiber so only once in awhile I have a banana with breakfast. It is pretty boring!
I have been adding 1 Imodium a day in the morning to slow the process down. I actually will skip a day; which is such joy, and the next day can be normal or soft to normal. I just try to keep persevering, as you do, one day at a time. I would like to retire, but the cost of Entocort keeps me working! Love, Ginny
You are right about one thing, the awareness of other people around us that are suffering is very evident and I am prayerful and thankful.
but I 2 am sorry to read that U are having some issues----
; I would imagine! At other people's suggestions, I have eliminated a lot of fiber so only once in awhile I have a banana with breakfast. It is pretty boring!