You and I are probably the only two here who can't tolerate any nuts (except that I can tolerate almond milk
). Even almond butter does me in.Tex
Encouragement Needed!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Susie,
You and I are probably the only two here who can't tolerate any nuts (except that I can tolerate almond milk ). Even almond butter does me in.
Tex
You and I are probably the only two here who can't tolerate any nuts (except that I can tolerate almond milk
). Even almond butter does me in.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.
Ah, you forgot about me, Tex. No nuts here, either, though I do tolerate almond milk and flour. I also use nut oils to make my salad dressing. But no whole nuts or nut butters at all.Susie,
You and I are probably the only two here who can't tolerate any nuts (except that I can tolerate almond milk ). Even almond butter does me in.
Gloria
You never know what you can do until you have to do it.
Hi Susie!
First of all, here's a huge hug for you:
All of the above advice is excellent. I'll just add one more suggestion. Have you considered getting the MRT (mediated release test)? It is very helpful for those of us who have multiple, elusive sensitivites. Did you by any chance get the gene test from enterolab (the cheek swab test)? If you have a "double DQ" pattern, there is a greater likelihood of multiple sensitivities. Without the MRT I never would have suspected that I was sensitive to carrots, celery, yellow squash, white potatoes, etc. It is possible that you are reacting to one or more of those few foods you are eating.
Also, have you carefully checked the ingredients in any supplements to make sure there is no hidden gluten, dairy, etc. And I am wondering.... with 4 kids, if you aren't being exposed daily to gluten?
If you have any questions about MRT, I'm sure Mary Beth wouldn't mind a PM from you.
Sure hope things begin to improve soon.
Love,
Polly
First of all, here's a huge hug for you:
All of the above advice is excellent. I'll just add one more suggestion. Have you considered getting the MRT (mediated release test)? It is very helpful for those of us who have multiple, elusive sensitivites. Did you by any chance get the gene test from enterolab (the cheek swab test)? If you have a "double DQ" pattern, there is a greater likelihood of multiple sensitivities. Without the MRT I never would have suspected that I was sensitive to carrots, celery, yellow squash, white potatoes, etc. It is possible that you are reacting to one or more of those few foods you are eating.
Also, have you carefully checked the ingredients in any supplements to make sure there is no hidden gluten, dairy, etc. And I am wondering.... with 4 kids, if you aren't being exposed daily to gluten?
If you have any questions about MRT, I'm sure Mary Beth wouldn't mind a PM from you.
Sure hope things begin to improve soon.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Susie,
It's great that you have a VitaMix. I love mine and use it for green smoothies and soups. I put spinach and/or kale, cucumbers, avocados, carrots, and experiment with all of the green leafy vegies in the produce section such as bok choy, chard, etc.
In addition to Tex's book (which is excellent) and Eat to Live by Dr. Furman, which is also excellent, I recommend Crazy, Sexy, Diet. It is written by a woman who put her cancer into remission by a healthy diet. Also, Terry Wahls' story is inspirational. (You can Google her name. There is a Ted Talks that she gave and she has a website.) There are MANY inspiring stories of people who have cured their diseases with a healthy diet. And, there is a common thread. No gluten, dairy, but plenty of healthy vegetables. I am convinced if I had eaten this way, I would not be where I am today. (One of my kids has similar issues and I wish that I had followed this diet for his benefit, too.) I have been following this vegetable rich diet for a month, blending, and I am tolerating them well. As I said earlier, I have a long way to go.
Recipes which incorporate these foods are plentiful also. The books have recipes, and both authors have websites with recipes. Googling "green smoothies" will give you ideas. In the past month, I have found MANY helpful sites with recipes.
I am also working with an MD who is a Nutritionist. She gave me a copy of an elimination diet which also had some recipes. I paid for a stool sample out of pocket and learned about the SIBO. As I said earlier, she thinks that probiotics are key.
I hope this helps.
Best of luck,
Alice
It's great that you have a VitaMix. I love mine and use it for green smoothies and soups. I put spinach and/or kale, cucumbers, avocados, carrots, and experiment with all of the green leafy vegies in the produce section such as bok choy, chard, etc.
In addition to Tex's book (which is excellent) and Eat to Live by Dr. Furman, which is also excellent, I recommend Crazy, Sexy, Diet. It is written by a woman who put her cancer into remission by a healthy diet. Also, Terry Wahls' story is inspirational. (You can Google her name. There is a Ted Talks that she gave and she has a website.) There are MANY inspiring stories of people who have cured their diseases with a healthy diet. And, there is a common thread. No gluten, dairy, but plenty of healthy vegetables. I am convinced if I had eaten this way, I would not be where I am today. (One of my kids has similar issues and I wish that I had followed this diet for his benefit, too.) I have been following this vegetable rich diet for a month, blending, and I am tolerating them well. As I said earlier, I have a long way to go.
Recipes which incorporate these foods are plentiful also. The books have recipes, and both authors have websites with recipes. Googling "green smoothies" will give you ideas. In the past month, I have found MANY helpful sites with recipes.
I am also working with an MD who is a Nutritionist. She gave me a copy of an elimination diet which also had some recipes. I paid for a stool sample out of pocket and learned about the SIBO. As I said earlier, she thinks that probiotics are key.
I hope this helps.
Best of luck,
Alice
Dear Susie,
Your story isn't too long, don't worry. You're not bothering us!!! We are all here to help you. I hope that you will get better soon.
It is possible to feel depressed because of the entocort. I had that problem. At one time, I had bowel issues because of the entocort (side effect). Remember, you have to wean the entocort slowly.
To help you with your diet: I love fish and it seems to calm things down for me. I also drink a lot of water.
Susie, please don't give up. You can do this. I know that it's depressing.
I can't give you clear answers since I've been diagnosed a year ago and everything is still new for me.
Good luck and please don't give up.
Lots of hugs!!!!
Julie
Your story isn't too long, don't worry. You're not bothering us!!! We are all here to help you. I hope that you will get better soon.
It is possible to feel depressed because of the entocort. I had that problem. At one time, I had bowel issues because of the entocort (side effect). Remember, you have to wean the entocort slowly.
To help you with your diet: I love fish and it seems to calm things down for me. I also drink a lot of water.
Susie, please don't give up. You can do this. I know that it's depressing.
I can't give you clear answers since I've been diagnosed a year ago and everything is still new for me.
Good luck and please don't give up.
Lots of hugs!!!!
Julie
It doesn't matter how many times you fall, but how many times you get up en go for it again. HOPE !!!!
Thought I would report that 40 mgs of prednisone has completely eliminated all my MC symptoms. In fact I border on constipation some days. So this is what normans are supposed to look like, eh? It's been years since I really saw one.
I wonder what my complete response to steroids means? Does it suggest there is not a underlying candida or other issue? If I was eating problem foods, wouldn't I expect some level of reaction to them?
Susie,
I wish I had some advice. I am another big fan of making green smoothies. They really calmed my gut when I was having one every morning, despite all the fiber. Favorite ingredients are fresh cranberries and kale.
I wonder what my complete response to steroids means? Does it suggest there is not a underlying candida or other issue? If I was eating problem foods, wouldn't I expect some level of reaction to them?
Susie,
I wish I had some advice. I am another big fan of making green smoothies. They really calmed my gut when I was having one every morning, despite all the fiber. Favorite ingredients are fresh cranberries and kale.
Remember that GI docs prescribe corticosteroids to treat MC without recommending any diet changes, and it seems to work for a lot of people (not everyone, of course). Don't worry, when you wean back off it, you'll see the difference (if you're still eating any problem foods).Zizzle wrote:If I was eating problem foods, wouldn't I expect some level of reaction to them?
You may be correct about the Candida, though. I would think that if you had a serious Candida overgrowth, (or a bacterial infection, SIBO, or parasites, or whatever), the pred wouldn't stop the D. Pred only suppresses inflammation, it doesn't "cure" any underlying problems caused by invading organisms. Note that the primary mode of action for corticosteroids is (IMO) suppressing mast cell numbers.
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.
That's what bothers me about those two tests. They obviously have no correlation with the inflammation connected with IBDs. It makes one wonder how reliable they actually are for flagging other issues.
Tex
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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wmonique2
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a little encouragement..
Susie,
I feel for you...I have type 1 as well. I don't know how you can handle the SCD diet. It's so dangerous for us. A low A1C...you don't have the A1C of a diabetic. You're not eating enough carbs. You're not eating enough period.
You got plenty of advice here but I am (and was) put on BOTH entecort and lialda just like you. Weaned myself off from entocort first then reduced the lialda to 2 a day.
But I had a major flare up from emotional stress and the paleo diet I was eating. That lasted months and had to go back on entecort for 4 months. Weaned myself off that one a month ago. So now on 2 day lialda. I have to pay attention to roughage. My system can't take it. I am also taking claritin now, my main issue is nausea. Not D or C.
I eat chex with almond milk, juiced fruits (apples, pears, carrots) acorn squash, butternut squash, chicken, fish, tuna, rice and grits. Peeled and well cooked zucchinis. I take the peel off everything.
I send you Light and positive thoughts. I hope you start eating right and feel better soon.
Take care,
Monique
I feel for you...I have type 1 as well. I don't know how you can handle the SCD diet. It's so dangerous for us. A low A1C...you don't have the A1C of a diabetic. You're not eating enough carbs. You're not eating enough period.
You got plenty of advice here but I am (and was) put on BOTH entecort and lialda just like you. Weaned myself off from entocort first then reduced the lialda to 2 a day.
But I had a major flare up from emotional stress and the paleo diet I was eating. That lasted months and had to go back on entecort for 4 months. Weaned myself off that one a month ago. So now on 2 day lialda. I have to pay attention to roughage. My system can't take it. I am also taking claritin now, my main issue is nausea. Not D or C.
I eat chex with almond milk, juiced fruits (apples, pears, carrots) acorn squash, butternut squash, chicken, fish, tuna, rice and grits. Peeled and well cooked zucchinis. I take the peel off everything.
I send you Light and positive thoughts. I hope you start eating right and feel better soon.
Take care,
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Leah,Leah wrote:Zizzle, I hadn't realized you started taking Prednisone. Was it the rash that finally made up your mind? When I saw you, you seemed to be pretty much in control of the food issue.
Yup, it was the rash. It got worse after I saw you, so I went back to the dermatologist and rheumatologist and they confirmed it was Amyopathic Dermatomyositis (not a great autoimmune disease to have). I started prednisone 3 weeks ago, and I'll start Plaquenil today after my baseline eye exam. My rash is FINALLY starting to improve, which is actually lucky. Many people with DM fail to respond to 60 mgs of prednisone, let alone 40, so most people take methotrexate, Cellcept AND prednisone, and eventually expensive IVIG infusions. It's crazY!! It's a miracle they aren't overwhelmed with opportunistic infections. This is evidence to me that docs have no clue what they are doing with respect to this disease (sound familiar MCers?). All they can do is throw toxic non-specific immunosuppressants at it, and if their patients can survive that, but are still ravaged my rashes and muscle weakness, they throw up their hands and say they don't have anything else for them. WHAA?!? It's disgusting.
I'm determined to beat this with a combo of diet, Chinese medicine (acupuncture and herbs), further investigation of my metal and environmental allergens and triggers, and traditional western meds for flares (after I rule out cancer on 12/31 -- a potential trigger of the rash in 10-50% of cases).
I'll be on prednisone for a minimum of 22 weeks while I slowly taper every 2 weeks. Getting off once I'm down to 10 or 5 mgs will be the hardest. I'll be on plaquenil for at least 6 months, probably a year. I can wean off once I've been steroid free and completely rash free for at least 3 months. The rheumy seems to think that'll never happen and I'll be on plaquenil forever. Sigh.
My eye exam was normal except I am high risk for glaucoma bc my grandpa had it, I'm on steroids, and the opening to my optic nerve is not symmetrical (wider on the right). Not a big deal, just more frequent eye doctor visits, of course
My eye exam was normal except I am high risk for glaucoma bc my grandpa had it, I'm on steroids, and the opening to my optic nerve is not symmetrical (wider on the right). Not a big deal, just more frequent eye doctor visits, of course