Any Advice?

[kayare]

Hi All -

I am still struggling with D and arthritis and and hoping for some ideas.

Since May, my diet has been very basic and strict - salmon or shrimp on occasion, rice, GF oatmeal, rice chex, quinoa a few times, Larabars with dates, blueberries, cashews, etc., potatoes, squash, carrots, a few other similar veggies and a few fruit, almond/coconut milk, a small amount of cheese since dairy isn't a problem for me according to EnteroLab. I use olive oil and coconut oil. I've made and eaten our now famous muffins using almond flour. I drink a glass of wine and coffee here and there, but I haven't noticed a difference on those days, and I've paid attention for that.

I have just started my third month on Budesonide. I am still taking 9 mg.

Many days, I am better although the arthritic pain is still widespread. Then approximately one or two days a week, the D is back and so is the pain despite the 9 mg. In addition, my doctor wanted me to taper down to to 6 mg. I tried alternating between 6 mg and 9 mg to see if I could step down, but the result was just WD.

My rheumatologist is very supportive of my diet (as is my GI) but also believes I need an immune suppressant. She gave me a prescription for Prednisone "for emergencies" especially since I was planning a vacation to a remote location.

I did take that eight day vacation. On the third day, my D was the worst it had been in months. I was very weak. I took four Immodium and 10 mg Prednisone. I continued the Prednisone for the remainder of my trip. I felt better, and my energy was better. I came home on Thursday. I am off the Prednisone and continuing the Budesonide - 9 mg. The D and pain is back with a vengeance.

I am returning to work on Monday. My love my work, but it is fairly high stress and long hours including two evenings - about 55 hours per week.

So today, my energy is low, I feel nauseous, and my pain is high. My appetite is minimal; I don't think I should lose much more weight. I think I need to change something!

I really appreciate all of the help and support of this forum. I'm not sure where I would be without all of you!

Kathy

[Deanna in CO]

Kathy,

Maybe it's just me, but I wonder about that cheese. It might be worth trying giving that up, since so many of us with MC have so much trouble with dairy, even if Enterolab suggested that wasn't it.

You might also think about that GF oatmeal. A lot of gluten-sensitive folks find oatmeal to be a problem, even if it's gluten-free. Tex could tell you more specifically, but I believe I've read here that the protein in oatmeal is quite similar to gluten (like the proteins in rye and barley, which are so similar that pretty much all gluten-sensitive people have avoid them). Because of this I haven't tried them yet - and I won't try them until I'm confident I am really on my way to healing.

I know how difficult all these restrictions are. When I started having gallbladder trouble and had to cut my fat intake back to next to nothing (on top of all the other restrictions), I wanted to cry - for about two weeks! But I am managing, and you can too.

I hope you are feeling better soon!

Deanna

[Gloria]

I always hesitate to give advice because my situation is different from everyone else's, but I think you need to hear from us, so here goes.

Since May, my diet has been very basic and strict - salmon or shrimp on occasion, rice, GF oatmeal, rice chex, quinoa a few times, Larabars with dates, blueberries, cashews, etc., potatoes, squash, carrots, a few other similar veggies and a few fruit, almond/coconut milk, a small amount of cheese since dairy isn't a problem for me according to EnteroLab. I use olive oil and coconut oil. I've made and eaten our now famous muffins using almond flour. I drink a glass of wine and coffee here and there, but I haven't noticed a difference on those days, and I've paid attention for that.

As Gabes has mentioned, we need to eat like we are babies who are just learning to eat. In other words, we need to start with very plain, soft, uncomplicated, unprocessed foods and meals. I agree with Deanna that oatmeal is a suspect food because of the possibility of cross-contamination. Nuts are definitely out until we are healed. Some are able to eat nut butters; I have tried many different nut butters, but I react to all of them. Blueberries - I love them and they were on sale for $1 a pint this weekend, but I believe I react to the skins. It's too much roughage. I used to love Larabars, but can no longer eat them, probably because of the fiber in the dates again. These are all healthy foods, but your gut may not be ready for them.

Your best bet is to eat things like homemade soup or stew with very soft-cooked vegetables until you are beginning to heal. For breakfast, some have eaten rice cooked in a crock pot until it's almost mushy. Canned or cooked fruit is best.

If you haven't done so already, you may want to begin keeping a food diary, listing everything that you eat, and all of your BMs, whether they are watery, solid, soft-serve, etc. This has helped many of us to see a cause-effect relationship between what we eat and our B.M.s.

I feel your frustration. It sometimes feels like we've done everything we can and it still isn't enough. But you can get better; it's a matter of eliminating all food that is irritating your gut. We are here to help you. We know how upsetting this road we're travelling can be. I hope you can figure it out soon.

Gloria

[tex]

Hi Kathy,

I agree with Deanna and Gloria. Pure, gluten-free oats cause me to react, and many others here have the same problem. The experts are wrong about pure oats being safe for celiacs -- it just takes longer to build up a sensitivity to oats. Once you develop a sensitivity, then oats will cause D every time you eat them.

I believe that Gloria is right on target with her advice about blueberries and other sources of fiber. They are fine after we are in remission and our gut has healed, but we don't handle them very well while our intestines are still inflamed and hypersensitive.

Only 2 or 3 brands of quinoa appear to actually be GF (pick a kosher brand). Most others are contaminated with barley, wheat, or rye. Several of our members have tracked reactions to contaminated quinoa.

http://www.nytimes.com/2011/04/18/nyreg ... &src=twrhp

Gloria is correct about nuts, also. Quite a few of us (including myself) react to cashews, peanuts, and various nuts, including almonds. Interestingly, most of us can eat nut butters, even if we react to the nuts themselves, but even nut butters cause problems for me. On the other hand, almond milk works fine for me.

If you have serious arthritis pain, something in your diet is clearly causing it. Gluten is the primary cause of arthritis, and dairy is probably the second most common cause.

If you still have problems after cutting out oats, quinoa, nuts, and sources of fiber, examine every item that you eat for possible gluten cross-contamination, including medications, supplements, toothpaste, and skin care products.

Do you keep any wheat flour in the kitchen that's used for meals for others? If so, it eventually ends up on everything in the kitchen (including your food and the plates and other utensils used to prepare your food and serve it). Wheat flour is extremely mobile -- it disperses almost as freely in the air as a gas.

Dairy products cause no digestive system problems for me -- I can eat all I want and never worry about D. However, I produce antibodies to casein, and in the long term, it apparently causes arthritis symptoms for me, because 5 or 6 months after I cut it out of my diet, my chronic aches and pains disappeared, and have not returned.

According to my research, all so-called autoimmune diseases appear to be caused by food or drug sensitivities. It's that simple, but it will take a long time for most doctors to admit this, because aches and pains are their bread and butter (and their Cadillacs, Mercedes, and BMWs ).

Tex

[Mim18]

Hi Kathy,

I don't think I'm able to add anything to the advice above. It all looks good. I just wanted to wish you luck with getting better.

Marion

[kayare]

Hi Deanna, Gloria, Tex, and Marion,

I really appreciate all of the help. Thank you! I am taking all of your advice and starting over again.

I'm going to eat the same foods all week to see if I can get my gut to settle down. I made a big pot of fish stew with rice, potatoes and soft veggies and a new batch of morning glory muffins. I'll eat rice and canned fruit for breakfast. I will probably add some almond milk and almond butter, too. I'm going to give up the little bit of cheese this week to see if that makes a difference. I questioned that myself despite the Enterolab results, but thought the extra protein helped me since I eat only small amounts of fish. I think I can tolerate all of these foods; I should know fairly soon. If I have to start over again, I will. I really want to avoid other meds.

I know my gut and my pain are connected since they ebb and flow together. I hope the weakness disappears. I often feel like I'm getting over the flu and am shaky with muscle weakness. I have a very strong constitution, so this is not at all like me, but I've been sick for so many years that I almost can't remember what it's like to feel good.

Of course a busy schedule, fatigue, and stress affects health and MC. But, how much of a factor is fatigue and stress? Is it possible to achieve remission through diet and minor schedule reductions? I know everyone's circumstances are different, but I'm curious. Is my busy schedule/sleep deprivation one of my reasons for not reaching remission?

Thanks for the support every day; it really helps not to be alone!

Kathy

[tex]

Kathy,

According to my research, stress is a major factor in this disease, and of course, the fatigue is due to the inflammation and the large amount of energy expended by our body as it fights the inflammation. Intestinal healing requires extra protein. Sleep deprivation also comes with the disease for many of us (the pain and bloating certainly kept me from sleeping), and the lack of sleep interferes with healing and many other normal body processes.

It's certainly possible to achieve remission through diet changes (many of us here have done that, including myself), but it's difficult to say how much of an effect work schedule reductions might have on recovery. We all have different symptoms and different work requirements, so we each have to determine our own limitations based on our personal situation and our physical abilities. Brain fog can be a problem for many of us when we're reacting, and it can certainly have a detrimental effect on our mental ability and efficiency.

I hope you can find the key to recovery,
Tex

[kayare]

Thanks for all of your advice and information Tex! I'm looking forward to your book.

This really is a vicious cycle and a difficult journey. I know I've been slow to accept the totality of the changes I've needed to make to get well. There's a lot to learn and a lot to change! One really needs to be patient. I knew my inflammation was causing daily, widespread arthritic pain including a swollen ankle and a sore shoulder, but I knew I had to take additional action when I developed a Baker's cyst on my knee and couldn't walk. I have made many, many changes and am better than I was before. I know I still have a long way to go!

I started back to work today after a two week break. I felt weak, but my gut was better.

I don't know all of the answers now, but I'm making progress.

Thank you!
Kathy

[brandy]

Hi Kathy,

I saw your post this weekend and agree with what everyone said above. Tex is right that it takes a fair amount of protein to heal and if I recall you are a vegetarian. I had good results eating fish and shrimp while I was on Entocort. Prior to going on Entocort I ate chicken overcooked carrots and rice 3 x per day for about 2 months so when I got to Entocort I moved onto fish as I was tired of chicken and don't really like chicken.
I don't think fish is really talked about on this forum too much but for about a 10 week period I ate low mercury fish or shrimp I'd say 6 days out of 7. Typically I'd cook fish in evening then force myself to have leftover fish with my breakfast and lunch and then have fish again for dinner and repeat. Cleanup was easy as I just broiled my fish on foil in my oven. Even for non vegetarians the protein load is tough to handle--believe me.
Also--like you I scored high on tuna on Enterolab.

Re: joint pain. Yes I had killer joint pain for about 8 weeks. As my gut healed the joint pain went away and is totally gone now.

The other thing---it does get better but I found it better to measure my results over say an 8 week period. If you look for improvements over 2-3 days you just get depressed but if you look back over an 8 week period you've made some progress!

Hope work wasn't too challenging on the week back. Regards, Brandy

[brandy]

Hi Kathy,

Forgot to mention I was an Entocort user. I found it almost better to listen to my body re: taper rather than Drs arbitrary dates. Typically when I got constipation 3 days in a row then I would do a step down. No one told me to do this but it seemed to work out ok. Brandy

[kayare]

Hi Brandy,

Work is good - thanks! It helps to hear how you accomplished this. Were these the only foods you ate or were they your primary foods? You lasted a long time on just a few foods! Then did you add foods back one at a time?

I'm sure I've eaten some foods that have aggravated my gut. I have eaten some raw veggies and nuts. Maybe the cheese has been a problem. Then I realized today that I had a box of Honey Nut Chex (corn!) instead of Cinnamon Chex. I haven't eaten it in two weeks, but I have to pay attention to what the other shopper in my house buys, too.

I know you're right to look over the long term, and I am better than I was last May. My D and pain is at least 50% better.

You're right that I've been a vegetarian. The salmon/shrimp for dinner have been a stretch for me. I guess it's time to stretch again and add it to lunch.

I found a rice protein powder that can be added to almond milk or water. It's only rice and a natural vanilla flavor - GF/SF, preservative free, etc. It seems like a good way for me to increase my protein. Has anyone ever tried a rice protein powder?

Thanks and take care,
Kathy

[brandy]

Hi Kathy,

Before I found this forum for about 8 weeks I pretty much just ate chicken, rice, overcooked green beans (now I know overcooked carrots would have been a better choice as beans are a legume) and nectarines peeled and heated in microwave for 30 seconds to a minute. That was breakfast, lunch dinner and snacks. I eliminated supplements and did meditative yoga about 4 x per week. Within about 3 days of adopting that diet I went from WD 10 x per day to about 1 or twice a day. Then after around 8 weeks I went to pretty manageable softserve once a day. Then I got on Entocort. Then I added more fish and shrimp into the mix.
Highly recommend the few foods regimen early on. As you get better start adding some things in.

I tried rice protein powder from Vitamin Shoppe. No negative gi effects that I could tell but I did not care for the vanilla taste so I gave it to the boyfriend. Be wary of anything with a lot of ingredients.

Re: nut butters. Since protein will be an issue for you I'd give them a try after you stabilize a bit. Early on they might be problematic.

Regards, Brandy

[kayare]

Hi Brandy,

Thanks for telling me what you did. That helps me.

I have been GF since May, and SF, EF and corn free since early June. I've also avoided all legumes, tomatoes, nightshades, and fruits or veggies that I don't particularly like. I realize now I had corn a couple of times a few weeks ago when I ate the wrong Chex cereal, and soy was in my gum at work. Gee, I thought I had read every label! I have been doing all of my own cooking and have eaten few foods. When I ate out, I ate basic foods, and I was careful to ask for what I needed. I had been eating some almond butter, a few almonds, and some salads. While I didn't see a direct connection to my not getting well, there must have been.

This past week, I have taken all suggestions including getting extra sleep. My diet has been very, very basic. I did add the rice protein powder because I think it helps me increase my protein, and I don't mind the taste. I had a couple of better days, but I'm mostly the same. I guess it just takes a long time to heal. I stopped coffee today to see if that helps. I'll really miss that.

Thanks for all of the support.

Kathy