The struggle just gets worse :(

[GrammyLou]

I am still struggling, and seem to be getting worse rather than better. So if I understand this correctly, leaky gut goes hand in hand with LC. So assuming that I have leaky gut, it just seems like I will eventually run out of food that I can tolerate! I am already on a very limited diet (G/D/S free, no processed foods, no sugar, no almonds, no coconut ...and many other things I avoid) but it seems like every time I find a food that seems to sit well with me and I start relying on it, then after a month or so, THAT food starts to bother me. My general understanding of leaky gut is that particles of the foods we eat get into the blood (or "someplace" they're not supposed to be) because the gut is too porous. That causes us to build up antibodies and then start reacting negatively to that food. So if this is the case, it seems logical to me that eventually I will build antibodies to EVERYTHING I eat...and THEN what do I do????????

My latest problem seems to be with rice. If I can't even tolerate rice, I am seriously running out of foods to eat!!

[tex]

Hi Louise,

There is no published research on this, but I have a hunch that your theory is correct.

If you are taking any supplements (or meds), stop taking them (if you can) until you are back in remission. If you aren't taking any supplements or meds (or you can't stop taking it/them), you may need to take budesonide to help lower the inflammation level. An alternative would be to take a quick (short) treatment with prednisone in order to "shock" the system out of the flare. Sometimes that works when nothing else will.

If that doesn't work, the next practical step would be to suppress the immune system (so that it is less sensitive) with something like azathioprine (Imuran). Once your system settles down, you might be able to discontinue the Imuran eventually. But such a treatment is slow to get results. It takes months to work up to a therapeutic dose of Imuran. The so-called "biologics" are claimed to work for MC, but our own experience has been disappointing so far. And IMO they carry a greater risk of adverse events.

Tex

[Pam V]

Hi Louise,

I'm so sorry to hear that you are still not feeling well. It must be very frustrating and exhausting. I don't have a lot of experience or knowledge with this crazy MC ride but I have found that if I am starting to have issues, I do better when I have a protein based diet. Are there some meats or fish that you can tolerate? All my life, I have been a real carb lover. When I have rice or a baked red potato, I try to make sure that portion-wise, my bigger portion is protein and that my carb serving is fairly small.

I hope that you're feeling better soon!

Best wishes -
Pam

[Erica P-G]

Hi Louise,

Back in the beginning of my diagnosis....I was given the advice to just eat lots of protein....find the one or two that sit well and eat them exclusively and at each meal and due to your food situation, you need to eat so based on the fact you need to get the inflammation to slow down and/or stop I'd pick my couple 'safer' proteins and veggies you can over cook and then seriously consider Tex's advice above and get on an immunosuppressant (preferably prednisone) ASAP.

If it is going to work you should see results sooner than later.

Hugs
Erica

[GrammyLou]

thanks for the replies, everyone. I have an appt with my GI at the end of the month. It's ridiculous how long it takes to get an appointment! They are always booked out at least 6 weeks :(

I am still hoping I can get a handle on this with just diet and supplements. I did a course of budesonide shortly after my diagnosis (I wasn't nearly as symptomatic at the time) but it didn't seem to have much effect, good or bad. But maybe it's worth trying again... we shall see what my GI doc has to say. In the mean time I am just trying to figure out the dietary triggers...