Finished 6 Weeks on Budesonide-Still Sick

[SweetSydney]

Oh, no fun! You said you had the D for 17 months. If memory serves, on a different post, I read Tex said the longer you've had MC untreated, the longer it takes to heal. I am certainly finding this to be the case! I had extremely bad and frequent D for a year and a half, (dx in Oct.) and because of this, believe this is why my healing is taking so long.

Not long ago, I was having a great deal of pain in my ascending colon (or at least, that's where I believed the pain to be located), and extreme indigestion, bloating, etc. I started noticing a pattern, and on days when I ate a lot of potatoes, I'd get the pain. The more potatoes I had, or the more days in a row I had potatoes, the worse my pain. I thought my symptoms were just MC as I am still fairly new and have yet to have reached remission. (D came back again today after intermittent D and not D yesterday. growl.) But, since eliminating the potatoes and sticking with white rice, I am doing MUCH better. Still nauseas almost constantly, but I see this as progress.

However, at the same time, I do have Qs regarding findings in my colonoscopy I plan to pursue, but in the meantime, I am learning to focus on small steps of progress. Right now my greatest sign of progress is that I no longer see undigested food on the return end, or at least, very infrequently.

Hi, Jennifer.

Yes, I had the D for 16 months before I wised up and went to my G.I. Doc. My DO had told me to take Imodium, when I reported the D. It didn't do anything but stop it from being liquid.

Even my MS Specialist told me last February to take Metamucil capsules. Naturally, they didn't help me either.

So, I realize now, I have a long road to recovery.

I'm glad you discovered that potatoes don't agree with you. I tend to stick with white rice, too.

I'm sorry that the D came back.

Mine hit hard on Friday-I had eaten Bob's Red Mill GF Quick Cooking Oats. Never again!

I am glad you are doing much better.

Yes, after having it so long, un-diagnosed, I guess we both have a long road to remission.

Sydney

[tex]

I've always eaten 1/2 banana in my oatmeal

I realize that you feel that oats are safe for you, but please be aware that numerous members of this board (including myself) react not only to contaminated oats, but to pure oats as well. The avenin in oats is weaker (a weaker protein) than the gluten in wheat, but it is still a known antigen for many celiacs. Avenin is a more insidious threat than gluten, because due to the fact that oats has a lower protein content, and avenin makes up a smaller fraction of the protein in oats, than the fraction of gluten in wheat, for example, it typically takes many of us longer to develop an intolerance to it, so that by the time the sensitivity surfaces, we have become confident that it is a safe food for us. In my own case, for example, I did an oat challenge several years ago and discovered that it took approximately 6 weeks before I began to react. Even though I stopped eating it, it took another 6 weeks for the D to completely stop.

Let me relate a little true story. For many years, McCann's Irish Oats proudly proclaimed themselves as the only safe source of oats for celiacs. Then one day almost 10 years ago, someone burst their bubble by doing a series of spot checks of products found on grocery store shelves. Lo and behold, it was discovered that McCann's Irish Oats were not gluten-free, after all. In fact, at least one of the samples of their products had a very high level of gluten contamination, far above the tolerance limit for most people who are gluten-sensitive. After that, McCann's stopped labeling their oats as gluten free.

The gluten statement on their website currently reads as follows:

Are McCann's Irish Oats gluten free?

We cannot guarantee that McCann’s Irish Oats are completely gluten free. During the supply chain process, between farm and mill, there is a possibility of our oats crossing paths with other grains, such as wheat and barley. Cleaning equipment within the milling process would remove the vast majority of these grains along with other elements such as stones and straw.

http://www.mccanns.ie/faq.html

This is basically what the spot check test results showed:

Four different lots of McCann's oats, a brand which was at one time thought to be gluten-free, were tested in 2004 (Thompson). One sample had no detectable gluten (less than 3 ppm), but the remaining three samples showed levels of 12, 23, and 725 ppm gluten. In this same study, Quaker Oats Old-Fashioned samples had levels of 338, 364, 971, and 1807 ppm gluten; Country Choice Old-Fashioned had one sample with no detectable gluten, and three other samples with 131, 210, and 120 ppm gluten.

http://www.glutenfreeindy.com/contamination/oats.htm

Please read the following text version of a power-point presentation made a couple of years after that discovery, as posted on the FDA website. The presentation clearly describes the magnitude of the cross-contamination problem that is present with many commercial flours:

http://www.fda.gov/Food/LabelingNutriti ... 206308.htm

Trust me, oats are not our friend.

Tex

[tex]

Sydney,

Also, please check out this report for additional information based on spot checks that turned up contamination of processed products generally considered to be gluten-free:

http://www.glutenfreedietitian.com/news ... ee-grains/

Here's a more extensive report on the oat product investigation that I mentioned in my previous post. This article from the New England Journal of Medicine even includes a table that lists the actual test results (click on Table 1 to see it in an enlarged view):

http://www.nejm.org/doi/full/10.1056/NE ... 1043511924

Tex

[SweetSydney]

Thanks for the links, Tex.

Looks like oatmeal is off my diet, too.

I am finding fewer and fewer things to eat.

I'll be back down to 72#s in no time.

Sydney

[SweetSydney]

Sydney,

Also, please check out this report for additional information based on spot checks that turned up contamination of processed products generally considered to be gluten-free:

http://www.glutenfreedietitian.com/news ... ee-grains/

Here's a more extensive report on the oat product investigation that I mentioned in my previous post. This article from the New England Journal of Medicine even includes a table that lists the actual test results (click on Table 1 to see it in an enlarged view):

http://www.nejm.org/doi/full/10.1056/NE ... 1043511924

Tex

Tex,

I've actually decided to avoid GF products, and eat GF, from a simple diet.

Sydney

[tex]

I apologize for the bad news, but I'm just trying to track down the possible reason/s why you have been unable to attain remission. Hopefully, with some healing, you will be able to add some foods back into your diet.

Many times, members are very close to success with their diet, but there's no way to tell whether they are within an inch, or they're still a mile away from remission, because the symptoms are the same. And then by removing that one last hidden problem, they suddenly have their life back, virtually overnight. We never give up hope here, because the answer is out there somewhere — we just have to find it.

Surely, if we all put our heads together, we can discover some additional foods that you can safely eat.

Tex

[tex]

I've actually decided to avoid GF products, and eat GF, from a simple diet.

That's definitely the safest, surest path to remission.

Once you reach remission, then you can easily test foods, one at a time, to see if they are safe to add to your diet.

Tex

[SweetSydney]

Hi, Tex.

That's what I thought. I have never used mixes in the past, and I feel that I won't know what, in a GF product, might cause a problem for me.

Sydney

[Leah]

I agree with Tex. I found that I can't do oats either, but have been able to add many things back in to my diet since healing and got my weight back up. Have you tried Chex cereals with almond milk? It's pretty good and very easy. I mix corn chex with cinnamon chef ( because it's pretty sweet). Honey nut chex is good as an out of hand snack too.I don't know if you can eat nuts, but i also add some almonds or pecans for some extra fat and protein.

Leah

[SweetSydney]

I agree with Tex. I found that I can't do oats either, but have been able to add many things back in to my diet since healing and got my weight back up. Have you tried Chex cereals with almond milk? It's pretty good and very easy. I mix corn chex with cinnamon chef ( because it's pretty sweet). Honey nut chex is good as an out of hand snack too.I don't know if you can eat nuts, but i also add some almonds or pecans for some extra fat and protein.

Leah

Hi, Leah.

No, I haven't tried Chex cereal with almond milk. I am not a fan of a cold breakfast. But, thanks for the suggestion.

And I can't digest nuts.

Sydney

[SweetSydney]

I agree with Tex. I found that I can't do oats either, but have been able to add many things back in to my diet since healing and got my weight back up. Have you tried Chex cereals with almond milk? It's pretty good and very easy. I mix corn chex with cinnamon chef ( because it's pretty sweet). Honey nut chex is good as an out of hand snack too.I don't know if you can eat nuts, but i also add some almonds or pecans for some extra fat and protein.

Leah

Hi, (again) Leah.

I started think about the almond milk.

I have a question for you. In my area, I can only find it is half gallon refrigerated cartons.

How long does it stay fresh?

I doubt that my husband would drink it.

But, I started thinking, Chex cereals and almond milk would make a great evening snack, or even lunch for me.

Due to my MS, I don't have much of an appetite. And I really hate that I am losing weight again. It was a struggle to get up to 80#s from 72#s.

And now being GF, and eating low fat, it is getting harder to find something to eat.

Thanks.

Sheila

[tex]

Hi Sheila,

Well, I'm not Leah, obviously, but I thought I would mention that in my part of the country at least, Diamond brand Almond Milk seems to be dated roughly a month ahead, while Silk brand Almond Milk is usually dated at least 6 weeks or more ahead. Both are available in half-gallon cartons, in 2 or more versions (Vanilla, Unsweetened, Original, etc.). Silk brand Coconut Milk is also available in the same type of container, right next to the Almond Milk, in many stores. I notice that some stores separate the different brands of Almond Milk into different display locations in their refrigerators, for some reason or other.

The label says that it will last for 2 weeks after opening, but I sometimes use it for 3 or 4 weeks after opening the carton, at times when I'm not using it regularly, and I've never noticed any problems with it yet.

I was also a bit apprehensive about trying Almond Milk at first, but after using it a few times, I like it better than cow's milk. It has a great taste and it's more nutritious, to boot, (to say nothing of staying fresh longer).

Tex

[Leah]

Hi Sheila. Tex beat me to it, but he's right, it does last a long time. I had my husband try it with his cereal ( unsweetened vanilla) and he likes it better then milk! BUT he said it's not good for just drinking straight ( for him at least). When it's cold outside, I have been known to heat some in a pot with unsweetened cocoa and a bit of sugar . It makes great hot chocolate and you can control how sweet it is :)

Honey nut Chex is good too, It's made from corn so it stays crunchy longer then the rice Chex or cinnamon Chex. But if you like no sugar cereals, corn chex is my favorite. I don't know if you have EnviroKids brand cereals where you live, but they make about 5 or 6 GF ones. I just bought the sweetened corn flakes to try.

Hope it works for you. It's always nice to find something new to try. If you do try it, let me know how it goes
Leah

[SweetSydney]

Hi Sheila,

Well, I'm not Leah, obviously, but I thought I would mention that in my part of the country at least, Diamond brand Almond Milk seems to be dated roughly a month ahead, while Silk brand Almond Milk is usually dated at least 6 weeks or more ahead. Both are available in half-gallon cartons, in 2 or more versions (Vanilla, Unsweetened, Original, etc.). Silk brand Coconut Milk is also available in the same type of container, right next to the Almond Milk, in many stores. I notice that some stores separate the different brands of Almond Milk into different display locations in their refrigerators, for some reason or other.

The label says that it will last for 2 weeks after opening, but I sometimes use it for 3 or 4 weeks after opening the carton, at times when I'm not using it regularly, and I've never noticed any problems with it yet.

I was also a bit apprehensive about trying Almond Milk at first, but after using it a few times, I like it better than cow's milk. It has a great taste and it's more nutritious, to boot, (to say nothing of staying fresh longer).

Tex

Hi, Tex.

No, I daresay you are not Leah.

Thank you for the explanation about Almond Milk and the different brands, locations, etc.

I thought about Leah's suggestion, and realized, I could add the cereal and Almond milk as a snack or a meal, and hopefully, not continue to lose weight

Whoever said "You can never be too rich or too thin" did not have MS.

Sydney

[SweetSydney]

Hi Sheila. Tex beat me to it, but he's right, it does last a long time. I had my husband try it with his cereal ( unsweetened vanilla) and he likes it better then milk! BUT he said it's not good for just drinking straight ( for him at least). When it's cold outside, I have been known to heat some in a pot with unsweetened cocoa and a bit of sugar . It makes great hot chocolate and you can control how sweet it is :)

Honey nut Chex is good too, It's made from corn so it stays crunchy longer then the rice Chex or cinnamon Chex. But if you like no sugar cereals, corn chex is my favorite. I don't know if you have EnviroKids brand cereals where you live, but they make about 5 or 6 GF ones. I just bought the sweetened corn flakes to try.

Hope it works for you. It's always nice to find something new to try. If you do try it, let me know how it goes
Leah

Hi, Leah.

That's OK. I appreciate all the advice I am being given here.

I am going to buy some tomorrow, and I think I am going to buy the Honey Nut Chex. Maybe that will satisfy my lack of dessert.

My husband is a good sport about trying different things. When I discovered that I couldn't eat oats, he mixed the Bob's Red Mill GF oats into a meatloaf. (I can't digest red meat, so I don't eat meatloaf.)

It sounds good for hot chocolate. I like my cocoa less sweet than most people.

Thank you so much for the suggestions.

I really don't want to lose any more weight.

I'll let you know what I think-but it sounds really good.

Sydney