Newbie and Pregnancy

[KMarie]

Hi Friends, javascript:emoticon('')

I just came across this forum recently but was diagnosed with CC a year and a half ago. There is tons of great info on here, and I'm eager to learn more about how my diet can help me with this disease. So, this might sound crazy but I have been on Entocort 3 tablets a day for a year and a half! I'm not sure how normal that is, but it has worked out for me pretty well. My doctor seems to think I can stay on it for as long as I want, but wants to try and wean me off of it by next year when I plan to start trying to have a baby (I'm 34). I'm really scared to make any changes, and want to know what foods to avoid and start experimenting with in order to start this process.

In the meantime, I have been a very active person, managed to complete an olympic triathlon a couple weeks ago and plan to run a half marathon in December. I struggle with running to the bathroom still during my runs, and that has never quite gotten under control (had to stop 3 times during my race). Also when I'm under stress my attacks come back while on medication.

So a little history on me...before starting Entocort I was going 10-15 times a day for well over a year. Prior to this diagnosis, I have struggled with female issues and had 2 major surgeries 1 year before my diagnosis. I am hypothyroid (on synthroid for 7 years), have very low iron (take prescription iron), and high cholesterol (take no medicine for this).

I would really like to hear about people's experiences with trying to become pregnant with this disease, working out with this disease, and how diet affects all of this. Since I am so active, I feel like it will be a struggle to give up a lot of foods and have enough energy. How do you find that balance? Haha, ok these are probably way too many questions! Thanks for your feedback.

[tex]

Hi KMarie,

Welcome to the board. Your symptoms, medical history, active lifestyle, and response to Entocort are typical of many of the members here. You are fortunate to have a doctor who understands budesonide well enough to allow you to use Entocort that long — most doctors who prescribe it are afraid to allow the patient to use it long enough to accomplish anything worthwhile. You still have time to modify your diet in time to allow sufficient healing so that hopefully you will be able to maintain remission after the Entocort is discontinued.

In a nutshell, even though we always test negative to the classic celiac blood tests (unless we actually also have fully-developed celiac disease) all but a very small percentage of us are just as sensitive to gluten as the average celiac, and many of us are more sensitive to it than the average celiac. Most of us (probably at least 85% of us) are also sensitive to casein (the primary protein in all dairy products). At least half of us are sensitive to soy and most or all legumes, and some of us have additional sensitivities as well. For most of us, though, those are the main offenders, and if we eliminate them from our diet (100%) we can maintain remission without any medications.

IOW, once MC is triggered, the genes that predispose to certain food sensitivities are also triggered. From that point on, if we continue to eat those foods, our immune system launches an autoimmune-type reaction against them (and the interior of our intestines, since it's in the line of fire also), and additional inflammation is generated every time we ingest one of those foods. It takes much longer for for the intestinal damage to heal than most doctors realize. Corticosteroids (such as Entocort) can suppress the inflammation, but some of us (including yourself) generate inflammation faster than the drug can suppress the inflammation, so the clinical symptoms of the disease are not completely resolved.

Changing your diet to avoid those foods will allow the inflammation to come to an end, so that your gut can begin to heal. It's as simple as that. Of course, most people don't consider diet changes to be easy, but trust me, it's far, far, better than running to the toilet and/or taking powerful drugs for the rest of your life. If you are concerned that it may diminish your athletic performance, please note all the celebrity athletes who have adopted the GF diet in the past few years. According to them, their diet changes are the key to their world-class performance, rather than a handicap.

If you would like to verify whether or not you have any food sensitivities, the only reliable tests are the stool tests offered by EnteroLab (right there in Dallas). Dr. Kenneth Fine, who is a GI specialist, owns that lab and created the testing procedures. He has MC himself, which prompted him to find a way to actually resolve the symptoms, rather than to just treat the symptoms, the way that the medical profession tries to do. Unless we avoid the foods that trigger the inflammation, once we stop taking the drugs, we are right back at square one. You can check out the lab here.

One of the worst features of this disease is extreme fatigue (the Entocort tends to mask fatigue, as long as you are taking it). Believe me, you will have much more energy after you get rid of the foods that cause the inflammation. Foods that inflame our intestines are not our friends, no matter how difficult it is to face that fact. Contrary to the propaganda that we have been fed all our lives, wheat is not the "staff of life". For those of us who are sensitive to it, it is a toxin that our body will no longer tolerate.

We have a number of members who have gone through pregnancy with this disease. Most are not currently posting, but their stories are in the archives. Basically, if they have active MC, the hormonal changes that occur during pregnancy can make the symptoms worse, or they can make the symptoms resolve. The odds are about 50-50.

Again, welcome aboard, and please feel free to ask anything.

Tex

[Martha]

Dear KMarie,

Welcome! I'm in Dallas, too. I'm in southwest Dallas, 2 blocks from Duncanville in one direction, and 2 blocks from Cedar Hill in another direction. Are you anywhere close? I'd be happy to get together and talk, or talk on the phone.

I'm 60, and didn't get MC until 4 years ago, so I can't help you with the pregnancy thing, but I have been eating gluten-free for 2 years, and dairy and soy-free for close to that, so I have lots of suggestions for what to eat.

I'd encourage you to do the EnteroLab tests to determine what you are intolerant to; it is so much easier to give up food if you know at least some of the things that are a problem. There really are plenty of things left to eat; and if you want to pay higher prices, there are lots of gf substitutes for "regular" food.

Love,
Martha

[Leah]

Hi KMarie. Welcome. As you can tell, Tex is our expert and has written a book on MC. You should get a copy. So much good info.

I am a personal trainer and know all about energy and nutrition. I was on Entocort for about 7 months while I took care of my diet. I am now completely off of it and holding pretty steady for 8 weeks now. I am GF, DF, SF and a few other "irritants". It's been a long road. It sounds like since you are still having episodes on the highest dose of steroids, you are eating one or more things that are inflaming your gut. If you can afford it, the Enterolab testing is a good idea. Check out their web site. I was unable to use the testing because I don't produce IgA antibodies, so I had to do it the hard way. I took out all dairy, all gluten, later soy. While I was at my worst, I also took out raw fruits and veggies, beans, and acid foods. I know! Awful huh? What did that leave me? Meats, rice, potato, rice, cooked veggies, applesauce.... The good news is that I have added many of these things back in since I have done a lot of healing. Still testing things.

I also drink a gluten free "green drink" with L-glutamine powder in it (intestinal healing) which gives me about 7 servings of veggies. And take some supplements. fruits are still tough on me.

At this point, you should think of getting to the bottom of your diet so you can heal - SLOWLY get off the drugs so you can carry a baby :)

Dig into this forum. It has a ton of info. Good luck

Leah

[jessica329]

Leah-

What is your green drink?

[Leah]

I order it online. It's called Catie's Organic Gluten Free Greens. You just mix it with a liquid and drink it down. It doesn't taste great, but taking down a bunch of green stuff ( without fruit) usually doesn't. If you can handle fruit juice, I guess you could make it taste better by using that instead of water.

Leah

[brandy]

Hi KMarie,

Welcome!

We've had a number of marathon runners and long distance bikers on this board. I think the biggest challenge for them was the snacks/drinks along the race course as gatorade for example can be problematic for us due to the sugars and extreme number of ingredients etc. I'm not sure how they managed the hydration/snacks along the race course. We've had a number of fitness discussions and I believe a fairly large number of posters work out pretty regularly. I think the general consensus is that working out is positive (reduces stress, takes your mind of things, builds bones etc.)

In order to taper down/off of Entocort you will most likely have to go GF. For me that looks like eating protein 3x per day, about 5 servings of cooked veggies a day, some fruit, fats are avacado's, coconut oil, ghee, olive oil, sweet potatoes and tubers like rutabags and turnips. I'm eating rice and white pototo only rarely. I'm not quite eating paleo but am eating extremely low grain. I was on Entocort for 4.5 months and have been off it since mid January. My energy levels are just now getting back to normal....i.e. like my energy pre MC. My energy levels are better being GF than what they were pre MC.

I believe there are some big name athletes that are GF to improve their performance, i.e. they don't have celiac disease.

Regards, Brandy