I'm another newbie to this great site

Christine. · Post by **Christine.** » Tue Mar 13, 2012 9:41 pm

Hi Everyone
I have so appreciated reading such good words of support and advice and finally decided it was time to introduce myself. My name is Chris and I live in So. California. I was diagnosed with MC in late January and found this sight a couple of weeks later. I have to say that I already have learned so much from you all. I went gf/df a month ago and noticed results within a few days. Although I still have some gas, bloating and gurgling in the evenings, the D has disappeared. the GI doctor prescribed Asicol, which I don't think helped at all.

Today has been a tough day, though, because I received Enterolab results that show I'm sensitive to glutin (which I surmised), casein, eggs and soy. Heaven knows what else I shouldnt eat. Those were the only 4 tests I ordered! I have always been known for my cooking and love to try new restaurants.........oh well.....

I do have a couple of questions. Since the gf/df diet has rendered me semi-normal (one or 2 almost normans) without eliminating eggs and soy, and I can live with the evening gurgles, will trace amounts of forbidden foods (other than gluten) do intestinal harm? Or is avoidance only to alleviate symptoms? I don't seem to have lots of the aches, pains and allergic responses that others have. Am I likely to develop them if I am not 110% strict? Sometimes I have to be out of the house at mealtimes. Today at a banquet lunch I ate a fruit cup and a pickle. Then I worried about the pickle! I would appreciate your responses.

Thank you all so much for all your postings. They have helped me so much already.
chris

Lesley · Post by **Lesley** » Tue Mar 13, 2012 10:46 pm

Hi Chris,
I also live in SoCal. Where are you situated? I am in LA.

Tex will no doubt weigh in much more weightily than I can. What I can tell you is if enterolab has found sensitivities to those foods you should stop the foods even if you seem to be asymptomatic, because you could have developed a tolerance to them, and they could be doing damage without your knowing or feeling it. Yes, trace amounts can cause damage, and gurgles are telling you that something is not happy.
So cut out the foods to which you have tested positive, and then see how you do.

I also used to be known for my cooking (operative words used to be) but right now I am having to be very creative with very few ingredients. I also no longer can try new restaurants, which is a PITA!
It seemed insurmountable to me in the beginning, and now it's sort of manageable. You just have to be organized and have foods you can eat and take with you. I couldn't have eaten a fruit cup or a pickle. You have to get used to bringing your own food, or telling the providers of the banquet about your food problems and, in many cases, they will accommodate for you.

You do seem to have a mild case, and hopefully you will get it under your control soon, and you will get your life back.

Joefnh · Post by **Joefnh** » Tue Mar 13, 2012 10:52 pm

Hi Chris and welcome to the site, the short answer to your question is yes you should eliminate all of the items you tested positive for, as without eliminating them you are not allowing your GI system to heal. Certainly you can keep the symptoms just manageable but thats like just keeping a cut from healing fully all of the time...not a good idea. The goal here really should not be to just get the symptoms manageable, but to achieve remission and most importantly the healing of your GI tract.

Whats happening now is that all of the tissues are inflamed and sensitive. By eliminating all of the problem foods you remove the source of the reaction that's causing the inflammation. Along the lines of inflammation the next adjustment that most of us find helpful is to eliminate all uncooked fruits and veggies for a while. You can still have items that do not bother you, but not raw, only well cooked. This includes salads, for me that was the toughest to give up. Personally it's been almost 2 years and I am starting to find that I can reintroduce some raw fruits and veggies now, but I still have to go slow.

It does not surprise me that asacol is not working well and I also believe it contains dairy in its formulation and that can actually aggravate symptoms in some.

Initially it does seem daunting to adjust the diet but after understanding what your sensitivities and you do have to learn some new recipes, but being one who has just really leaned how to cook, if I can do it, I'm pretty sure anyone can LOL. I have found that the best bet is to buy fresh whole food ingredients and not count on anything thats been processed in a factory, for at least a while. There are some good trusted brands that can be found in a health food store or in the gluten free section of your supermarket. A word of caution, get used to reading every ingredients label and make no assumptions. This is especially true that many items are labeled gluten free have things like soy or dairy in them.

Welcome to the group Chris, feel free to ask anything

MBombardier · Post by **MBombardier** » Wed Mar 14, 2012 12:01 am

Chris! Welcome to the fam.

Many of us have found that if we cut way back to (for example) chicken, broth, very well-cooked carrots, and perhaps applesauce for every meal, it gives some consistency to what we are eating so we can start to figure things out. Some people can eat potatoes and/or rice with the chicken soup.

This is how I started out, and every time my GI tract goes haywire it is what I go back to because my gut likes it and I can figure out from there what threw me off. Dong something like that--establishing a meal that you know you can eat--and then adding foods in will help you know what you can and can't eat other than the gluten, casein, soy and eggs.

Christine. · Post by **Christine.** » Wed Mar 14, 2012 9:05 am

Thanks so much for your advice. Today I go to the local Sprouts store to look for safe products. Tomorrow I will pack my own lunch when I have to be gone all day. It's not so lonely when you know there are other people out there dealing with the same problems. Leslie, I am in Orange County.....not too far from you.
Chris

Post by **tex** » Wed Mar 14, 2012 9:41 am

Hi Chris,

Welcome to our internet family. You're already received much excellent advice, so I won't cover that again.

Regarding your EnteroLab test results, and your improvement without eliminating all of the foods found to be a problem, please be aware that the immune system tends to focus on the single issue that it perceives to be the biggest health threat at the moment. That implies that until your gluten antibodies diminish to a level below a certain threshold, (which often takes a month or so), gluten will be the primary focus, (even though you may not be ingesting any). After those antibodies fade away, then your immune system will be open to respond to other issues, and it will probably begin to notice soy and eggs, and it will begin to escalate the production of antibodies against them, triggering an autoimmune reaction. Note that this is just one of my theories, (there's no scientific research to back it up), but we have found it to accurately reflect what happens to most of us, during our recovery. If this applies to you, then you should soon see evidence of it, and, as recommended by others, if your symptoms return, then eliminating the additional problem foods from your diet, should resolve the symptoms.

Again, welcome aboard, and incidentally, believe it or not, the fruit cup and the pickle probably won't cause any problems, unless you have a mast cell issue in conjunction with your MC, (vinegar has a high histamine content).

Tex

Leah · Post by **Leah** » Wed Mar 14, 2012 11:15 am

Hi Chris. Welcome
It sounds like you and I have very similar cases. I am also GF and DF but am still waiting for my Enterolab test results. I am a bit scared to find out more things i can't eat ( I did tests A and C). I'm just getting use to eating this way! However, I am taking Entocort right now and that makes everything "seem" great. I will have to step down from it soon.
What Tex just explained is new to me also. I also think sometimes that I can just find a "place" that I can live with and still be able to eat somewhat normally. But it sounds like that is not the case. I'm just hoping that down the road, once I'm healed, I can add some salad, fruit, and beans back into my diet.
Keep us posted
Take Care
Leah

Christine. · Post by **Christine.** » Wed Mar 14, 2012 3:47 pm

Hi Leah
I was actually shocked that my Enterolab results were what they were. Hope you have fewer sensitivities and that a livable "place" is possible.
I think I will try not to take the Entocort unless I have a really bad flare up. The new restrictions on my diet (soy and eggs) are truly depressing but I just ordered a coconut substitute for soy sauce online and I am about to make some safe (I hope) chicken and rice soup.

Thanks so much for your reply.
Chris

Leah · Post by **Leah** » Thu Mar 15, 2012 12:07 am

Hi Chris. Let me know how the coconut substitute tastes. I also saw a coconut butter substitute but i haven't tried it., I tried that butter substitute ( Earth Balance ). It was horrible. Hope the chicken soup works out for you. I made a delicious Beef, Mushroom, and brown rice soup today. Feel good so far :)
Leah

coryhub · Post by **coryhub** » Thu Mar 15, 2012 8:53 am

Hi Chris and welcome

I have had only two years experience with this disease but I can tell you that you need patience. I find that how well I do is in direct relationship to how well I adhere to my "safe" foods list. If I don't take silly risks or give in to foods I know are suspect, I do okay. If I go slow and introduce only one new food at a time then I can really gauge it's effect. If I get too cocky and think I'm cured then I pay the consequences so it's always my choice.
Good luck to you on this "foodie" journey. If you loved food before you will appreciate it even more when you discover a new, little delectable that you can tolerate.

Deb · Post by **Deb** » Thu Mar 15, 2012 4:33 pm

I'm still trying to figure this out. The only test from Enterolab that I initially had was for gluten. I eliminated it and went into remission (no pain, no gas, no D). My fat absorption rate was extremely high though, so a year later (fall of 2011) upon Enterolab's suggestion, I did another test and included gluten, casein, soy and eggs. I tested positive for everything, but my fat absorption had dropped from 1400+ to 400+..a good thing.. (and my gluten decreased significantly but I understand that doesn't really mean a lot). I continue to maintain quite well being only gluten-free. I did cut back on dairy for a few weeks and reintroduced it with no noticeable effects. If these additional foods (casein, soy and eggs) are still an issue for me wouldn't my fat absorption rates be worse? What would be my symptoms if I'm not handling these foods okay? My energy levels are much better, sleeping still is an issue, acid reflux is greatly improved. Your thoughts please????

Post by **tex** » Thu Mar 15, 2012 5:30 pm

Deb wrote:If these additional foods (casein, soy and eggs) are still an issue for me wouldn't my fat absorption rates be worse?

Not if you've developed a tolerance for them. Lack of intestinal damage implies tolerance. By definition, the development of tolerance implies initial histological damage, followed by healing of that damage, while continuing to ingest the food or foods that caused the damage.

Deb wrote:What would be my symptoms if I'm not handling these foods okay?

By definition, if you are asymptomatic, you will have no clinical symptoms. You may or may not have certain laboratory symptoms, though, such as intestinal antibodies. If you have developed a tolerance, then your biopsy samples should be normal. An EnteroLab test will tell you whether or not you are producing antibodies.

Tex

Christine. · Post by **Christine.** » Thu Mar 15, 2012 6:12 pm

Thanks for your sage advice CoryGut. It implies a little ray of hope after awhile. Sounds to me,reading all the sage advice from Tex and others that gluten is likely gone forever but maybe that isnt the last word on some of the other intolerances.
Leah I will let you know about the coconut soy sauce. I'm bummed about the soy free Earth Balance butter, though. I bought some on my Sprouts run but haven't tried it yet.

Chris

Deanna in CO · Post by **Deanna in CO** » Thu Mar 15, 2012 6:50 pm

Chris,

I'm using the soy free Earth Balance margarine. In my experience, if you expect it to taste like margarine, not butter, you'll find it satisfactory. It's most definitely not butter, which I miss, but given I may not ever be able to eat butter again, it makes a tolerable substitute.