Stopping by the Forum

[Rosie]

I haven't posted in a few months, but check the Forum from time to time. I'm feeling pretty stabilized on my gluten, dairy, soy and yeast-free diet, and haven't had a genuine flare in a year. However, I can tell that I'm still healing, as my gut is still sensitive to over-doing the fiber. I'll truly feel healed when I can eat a bowl of popcorn without paying a heavy price! I've been able to introduce a number of new foods, and that has given my spirits a nice boost. I got almost giddy when I finally found that I could add tomatoes! It opens up a lot of new recipes.

I'm so glad for the Forum, because I knew from the start that it would take a year or two in order for significant healing to take place. It gave me the motivation to stick with it early on when I didn't seem to make much progress. The progress certainly isn't linear, and I've had several months where I didn't see much change and thought that it was a good as it gets. Then it seemed like a switch flipped, I would suddenly see significant improvement. So I'll just keep motoring along and hope that I continue to slowly improve.

I've been following the journeys of Gabes, Ant, Joe and Zizzle, and really admire the honesty, courage and sympathy they bring to the Forum.

There are quite a few newbies that come along too, and I just want to say that you have come to a very special place! I wouldn't be where I am today without the great advice, tough love, and encouragement of Tex, Polly and all the others.

Rosie

[Gloria]

Hi Rosie,

I'm so glad to read that you are maintaining and doing well. You can eat tomatoes again! That gives me some hope. Thank you for your uplifting post.

Gloria

[tex]

Hi Rosie,

It's great to see an update from you, especially such a positive one.

I sincerely hope that you'll be able to eat that popcorn, soon, without any unpleasant after effects. Popcorn used to be my favorite food, before my symptoms started. Now, I can no longer eat it, because of my ileostomy.

Tex

[Gabes-Apg]

Rosie
thanks for your post

only in the past fortnight i have been a bit disponded re my limited about of ingrediets and meal choices, the impact of stress on my symptoms and thinking "is this as good as it will get?" and feeling a bit overwhelmed

to read your post and be reminded of the importance of patience for this journey true healing, and that minimal progress is not necessarily a bad thing has really helped me today THANK YOU

[Polly]

ROSIE!

Great to hear from you! I have been thinking of you and wondering how you are doing, so now I know! A whole year without a flare - now that is truly worth celebrating!

I know exactly what you mean about being able to add in tomatoes again. I was ecstatic when I could do this, because it opened up so many possibilities for meals. I find that I can now eat about 1/2 of a small bag of popcorn at the movies about once a mo. Also exciting!

Please don't be a stranger........and keep up the good work!

Love,

Polly

[ant]

Dear Rosie

Great post and great you are making such progress! Are you doing this by diet alone or with meds too? (I am being lazy and not searching previous posts)

Best wishes, ant

[Joefnh]

What a great post Rosie. Its great to here that you have been able to add back some foods. This limited diet can really be a challenge. I have found that fiber can be a hidden aggravant in so many foods. While I tolerate small amounts of cooked beans too many of the really cause issues.

Take Care Rosie

--Joe

[Rosie]

Thanks for all the kind comments...it reminds me of why I think this Forum rocks, and makes me realize that I should stop in more often......

Gloria, I'm so pleased that you are feeling better on Entocort. You have to be one of the most inspiring people on the Forum. You have had to cope with many more food intolerances than most of us, yet keep up the good fight and never give up. Like all of us, at times you get discouraged, but then pick yourself back up and keep trying. I am convinced that your persistence will be rewarded!

Tex, the forum just keeps getting busier, and I have to say that it's because of you and the other helpful "regulars". The varied experiences add a lot of perspective for all the newbies and visitors. And I hear you about the joys of popcorn. Pre-MC I would just love to curl up with a book and a nice big bowl of popcorn. And if I were feeling particularly indulgent, I would add a glass of wine. Now that I can't eat popcorn, I find that the wine doesn't taste nearly as good, and I don't drink much.....

Gabes, I'm sorry to hear that you have been discouraged lately about your apparent lack of progress. You have been an inspiration to me with your insight and honesty about your progress, and I feel good that I could return the favor. That's what's so great about the forum....we all have our low spots, and can find encouragement from the experiences of others. We gain strength from the shared journey.......

Polly, thanks for your kind words. It's indeed hard to believe that it's been over a year. I'm encouraged that you are now able to eat popcorn! I'll look forward to that milestone! And I'll try to stop by more often.........I realize that I miss you guys!

Ant, I'm doing this by diet alone. I had a somewhat unusual experience, although we all have our own stories! In retrospect, my first digestive problems happened about 5 years ago, and improved a lot when I went diary free. Then last year I started to deteriorate and finally ended up with the classic D. At this point the colonoscopy diagnosed MC in June of 2009. A chance comment by the GI at the time of my colonoscopy made me decide to quit taking my supplements, especially fish and flax oil. Oddly enough, my D pretty much cleared up when I did that, but I was still plagued with the fatigue, brain fog, and asthma. So I never took the Entocort prescribed by my GI. I found the Forum, and based on Tex's and others great advice, decided to get tested by Enterolab. I remember that Tex made the point that since I already knew that I was dairy intolerant, he would be very surprised if I wasn't gluten intolerant too. So while I was waiting for the test results, I went gluten free. Within a week the hoarse, raspy voice and constant throat clearing that had plagued me for several years cleared up dramatically. And the fatigue and brain fog slowly lifted over the next several months. Then when the Enterolab results came back showing gluten intolerance, I wasn't a bit surprised. I was a bit depressed to learn that I was soy and yeast intolerant too and removed them from my diet. Of course early on I was avoiding fiber, and also had problems with tomatoes and peppers, although potatoes were OK. I pretty much stuck to cooked veggies and avoided berries. By last summer, I found that I could add back most fresh fruits and tomatoes. And I could handle fresh corn too!! I've slowly been adding back a few more items. I would love to be able to eat beans, but am still avoiding legumes. I think that will be the next major test! When I look back to where I was when I started the gluten/dairy/soy/yeast free diet, I see that I've come a long way, although there were times when I felt that I wasn't making much progress.

Joe, thanks for your support! You are a real inspiration, dealing with the double wammy of MC and Crohn's. I'm encouraged when you say you can handle small amounts of green beans, although I see that you are soy intolerant like me. I guess each person differs in cross-reactivity to legumes, and I would like to see if I can add some back.

Rosie

[MaggieRedwings]

HI Rosie and welcome home!

It is fantastic to hear that you are doing so well and things are going pretty smoothly. Boy - a bowl of popcorn as a goal is a great thing. Have never really been able to do a bowl myself and I too was thrilled when I was able to add back in tomatoes on a sparing basis. What a treat.

Hope to see you around.

Love, Maggie

[Zizzle]

Hi Rosie,
Thanks for your post. Your experience sounds alot like mine. Congrats on all your progress! I'm guessing we're at the mild stage of the disease spectrum now. In fact, I went to the movies with my husband for the first time since the kids were born (6 years!!), and although I came prepared with BoraBora GF nut bars, I still gobbled up half a bag of popcorn. I just couldn't help it-- I was enthralled by Ben Affleck's performance in The Town.
I'm soy-free too, but soybean oil doesn't seem to bother me (I guess the refining process takes out the offending protein, much like peanut oil). And GF soy sauce is fine too - maybe becuase it's fermented?? Regarding tomotoes, I had a burger (on lettuce) this weekend with 2 huge slices of tomato and didn't pay a price either. You are making me count my blessings!! The yeast issue has got me perplexed now. I do not do well with wine or GF beer, and I'm beginning to suspect I'm intolerant of fresh grapes. I've cheated and tried some Udi's bread without trouble. From what I read, it's almost impossible to avoid yeast - it grows on most fruits and vegetables. Have you been able to work any yeast-containing items back into your diet?

[ant]

Dear Rosie

Many thanks for your detailed reply to my question. It is good that you are making progress and I think you are very wise to take a slow approach to reintroducing foods.

Here's hoping you continue on the path to healing.

Best wishes, Ant

[Rosie]

Zizzle, the yeast intolerance is a bit of a puzzle. As you say, there is yeast everywhere. I find that it's dose-dependent with me. I don't have noticeable problems with fruits and the yeast they naturally have on their surfaces. But foods with larger amounts of yeast, like bread and wine, still cause some problems. I can occasionally eat a slice of Udi's bread or have a glass of wine and not notice much. But if I have more than that, or several days in a row, I do notice some gas and looser stools. And I will feel tired, which I think is the beginnings of the fatigue associated with MC

Another thing I've noticed is that I haven't had a problem when eating out for quite a few months. Of course I'm as careful as I can be, but I have to believe that there have been a few times when I encountered some contamination. But I haven't reacted, and wonder if I'm healed enough now that my gut can cope with a single small exposure. I sure would like to think so.......

It's very tempting to think that I can be more casual with my diet, but I don't want to jeopardize the healing I've had, so will continue with being very careful.

Rosie

[tex]

From what I read, it's almost impossible to avoid yeast - it grows on most fruits and vegetables.

When I was recovering, I avoided that issue by not eating any fruit, (except an occasional banana), and precious few vegetables. Of course, unless you eat dried fruits, (which are loaded with yeast), peeling fruit and veggies will usually eliminate most of the yeast problem.

If you can eat lettuce without reacting, you're doing pretty doggone good.


Rosie,

Like you, I can now eat virtually all fruits and veggies without problems, but I still peel them, just to be on the safe side, (besides, without a colon, I don't need any fiber). Grapes, though, are the single remaining example of fruit that still cleans me out, pronto. Of course, every time I have tried them, I didn't peel the little buggers, so I'm sure the problem is the yeast/sulfites, since you can usually see the yeast on the skin. FWIW, I tested negative to yeast, at Enterolab, (5 years ago), so maybe the problem is the relatively high volume of fiber, (as the diameter of a sphere decreases, the ratio of the surface area to the volume, increases, because the surface area is a function of the square of the diameter, while the volume is a function of the cube of the diameter).

Tex

[Zizzle]

Eek, so all those Lara, Kind and BoraBora bars held together with dried fruit are full of yeast?? I seem to be doing OK with them. But grapes are cleaning me out, as you say. I just started adding raisins to my morning quinoa (I make a hot cereal with flax seeds, almond slices, pepitas and raisins), and so long as I chew really well, I'm not having any trouble. But give me a glass of red wine and I'll pass out from total lethargy and within minutes. Is it the sulfites more than the yeast? Is it the dose-response, as you say? I don't ever think I'll ever figure out the yeast connection.

[tex]

http://www.disabled-world.com/artman/pu ... ida_.shtml

http://www.suite101.com/content/sulfites-in-food-a79842

Tex