I've had a busy summer and now fall. DD got married in June - Whew- glad that is over. My almost 88 year old mother came down with pneumonia in July ( She was living in assisted living) and long story short she is now in a nursing home and doing much better. I have power of attorney so I have been busy with all of her affairs. In the mean time I have been experimenting with my diet. Now the long story. I am not on any meds and was dx'd with MC 11 years ago but wasn't told that until 4 years ago( I was told I had IBS). I wanted a pill to make me better so I tried Entocort, Imuran, Prednisone, and the list goes on. The only thing that sort of worked was Entocort. One dr put me on Neomycin 3 1/2 years ago and it made me so sick that no diet worked.... until now. I even took Probiotics and Diflucan and Nystatin but only time helped. Even 9 Imodium a day after the Neo didn't work. I did have a test that showed I was very fructose intolerant 3 years ago so no fruit, HFCS, or sugar. It really helped the gas ( I had a lot) and bloating and muscle aches. I also went GF at the same time. The D got no better even after 10 months of GF so I bailed. I didn't really put 2 + 2 together when some of the gas came back. Ok, long story short I decided this summer to experiment. Since I had success with No HFCS I tried no corn syrup or corn starch which turned into no corn period and I was somewhat better. I was eating wheat but not much rice. I was seeing dramatic improvement with no corn but not anywhere near where I wanted to be so I tried GF again. BUT I started eating rice ( I thought I needed a grain) but that was a mistake, the rice I mean. All the gas was gone and my hands didn't hurt anymore (I thought I was going to have to retire from dental hygiene before) but I had massive D. So I went grain free! I really think the rice and corn gave me the D and wheat acted like the fruit. It is a fructan. More info on fructans later. No more gas, pain( muscle pain and pain in my hands), and almost no D. I wouldn't even call it D anymore. The biggest improvements other than the consistency is the volume and the frequency. I am eating potatoes and they may have to go, but I am still experiementing with them and eggs. I am praying that I will be able to eat fruit again. I am doing ok grain free but I miss fruit terribly and I have some trouble getting enough calories. I just have to eat several meals a day and I use a lot of olive oil.
Hope this all makes sense. Bottom line is I am eating Paleo with potatoes but no fruit or nuts yet. The difficult part is eating out and especially at someone elses house.
My advice - don't take any antibiotics unless you have a positive hydrogen breath test for small intestine bacterial overgrowth (SIBO). And try going grain free if just GF is not working. If you have lots of gas try fructose free. Oh, I forgot to mention that I am dairy free also. I have been for a long time because it gives me reflux.
Congratulations! Great work! You were able to succeed after all those doctors failed, and as I recall, you consulted with some of the most highly-rated GI docs around. That's quite an accomplishment, to say the least. Perseverance and motivation, (together with an open mind), wins the battle. Good for you.
You should be very proud, because your case was one of the toughest we've seen here. Your post made my day, (and probably my week), so thanks for posting such a great progress report.
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.
Very interesting update, Pat. I'm so happy that you are doing much better. I've always felt that you and I were in this battle together, and it's great to see you on the path to wellness.
I am eating potatoes and they may have to go, but I am still experiementing with them and eggs. I am praying that I will be able to eat fruit again. I am doing ok grain free but I miss fruit terribly and I have some trouble getting enough calories.
This statement covers the problem in a nutshell with the Paleo diet for those of us who are fructose-intolerant. Eliminating fruit eliminates a huge chunk of the Paleo diet options. I truly hope that you don't have to give up potatoes in order to maintain your improvement. I recall that you are able to eat other vegetables, which helps. I also hope that you will be able to eat eggs. I think about you often and am glad to read your update. Keep us posted.
Gloria
You never know what you can do until you have to do it.
Thanks for your words of support. I am only doing what ya'll told me to do years ago. I just had to do it my way. Sigh and a little . I never would have been able to figure this out without your knowledge and support though. Thank you so much for being here and supporting me and many, many others. I just hope my experience helps someone else.
If you will remember I have had trouble with toothpaste... I learned on a corn avoiding forum about Tom's Children's Silly Strawberry. Most people would think it was bland but to me it is great and no nausea! Avoiding corn is harder than any of the other intolerances, at least for me. I don't think I have an allergy as some do and have all the skin isssues. Goodness, some of those people even have to use a certain toilet paper because of the corn added. We realize how much better we have it when reading of others allergies that are much worse than our own. I think I just have intolerances. I am just so thankful to not have accidents anymore. I can go bike riding with my DH now and not be so fearful of having an accident in my shorts. Ha now I just worry about having a bike accident! That leads me to another question...
Seems to me that there was another person on here that is paleo and runs... I am going to ride in an organized bike ride with rest stops later this month and need some kind of snacks that I can take with me. I certainly cannot eat or drink anything they will have at the rest stops. Do any of you remember her or what she did about that? Dextrose and citric acid are from corn so that is out. Thanks again and thanks in advance for your kind replies. I am contemplating taking a pork chop and baked potato, I guess in a ziplock bag??????
I'm impressed that you are going on a bike run. You certainly have come a long way!
I drink water and nothing else. It sounds boring, but I've gotten used to it. As for snacks...of course, if you can still eat potatoes, potato chips will work, as long as the oil they're cooked in is tolerable. You mentioned that you can't eat nuts yet - neither can I, but occasionally when I'm desperate for a snack, I will eat the most finely ground nut butter I can find. I've tried putting it on homemade crackers, but I do best with it when it's right out of the jar. I seem to tolerate almond butter the best, also hazelnut butter. Whole Foods sells different types of nut butters.
My usual snacks are pudding made with my own almond milk and muffins, which would be off-limits for you.
It just occurred to me that you might be able to tolerate almond flour. I've been using the leftover pulp from making almond milk in my muffins, but I also use grain/seed flours. The almond pulp is very soft and fine, like a moist flour. I've seen SCD recipes using almond flour. I believe they all use eggs, applesauce or bananas for binders, but it's worth a look.
Gloria
You never know what you can do until you have to do it.
I was very happy to read your post, Pat, and I'm so glad you are finding out what works for you. Really great news.
The Paleo/Runner might have been moremuscle (Karen) but I haven't seen her post in a long time. You might do a search on her posts. Perhaps Tex or Polly might have another suggestion.
Keep up the good work!!!!
Love, Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
As Shirley mentioned, you are probably thinking of Karen. Most of her posts are under the username "moremuscle", but she stopped posting for a while, and forgot her password, and then she re-registered as "sleeponit" on November 30, 2009, and she made a few posts under that username.
Here is one of her first posts under the new username, (it's the last post in this thread):
This is a great thread, because it contains a collection of many of her posts, including a brief description of her history with the disease, her treatment program, thoughts on the paleo diet, and and some of her experiences running marathons. But most importantly, it contains information on what she ate and drank during her training for marathons. Be sure to read her posts on both pages in this thread:
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.
. I never would have been able to figure this out without your knowledge and support though. Thank you so much for being here and supporting me and many, many others. I just hope my experience helps someone else.