my diet and GF

[scrowley]

i got diagnosed almost 2 months ago with LC and have been on 4 weeks of entocort so far and my symptoms are completely gone and were the 1st week in although i am still careful what i eat, i have been able to eat lots more fruit and veg so am very grateful.
i am wary that is will all come back as people suggested once i go off the pills in 4 weeks.
I have been reading alot about people being dairy and gluten free.
i went completely dairy free as soon as I got sick and it made me so much better and i also went off wheat and high fat foods, chocolate, caffeine, alcohol etc..
I am still eating however oatmeal every day, white bread, white rice, white flour etc and i find it makes me feel better not worse.
i never get D eating like this.
i know the link between MC and gluten intolerance. i tested negative for cealiac's twice.
is it possible to still be gluten intolerant but not show any effect on eating the foods or am I one of the lucky ones where I can eat this food?
thanks for all the help so far as i am trying to navigate this disease

[Zizzle]

It's possible you are only sensitive to the casein in dairy, but for many of us, gluten was the last thing we suspected. When I was at my worst, I was still eating toast and pasta to settle my stomach! Once I cut gluten out completely I noticed a real difference fairly quickly. You mention you cut wheat...I'm assuming you meant whole grain wheat, since white bread and flour are made of wheat. If you go GF now, you may not notice a huge difference since Entocort is supressing your symptoms. Have you considered Enterolab stool testing to know for sure if you are gluten intolerant (and dairy, soy, eggs, etc)?

[sarkin]

You might be one of the lucky ones, but the odds are against it. More likely, the Entocort is providing some protection to you, while you continue to eat those foods. One way to find out would be to eliminate 100% of gluten from your diet now, while you still have some weeks of Entocort left, and then, maybe a month or so after you're off Entocort altogether, eat some, and see whether you react. Another way to find out would be to do testing through Enterolab. Many, many, many of us have tested negative for celiac disease. So do a lot of people who *have* celiac disease - for years, they test negative, and are sick as all get out. Then, finally, they test positive. Not the way I wanted to spend the next 10 years, so I did the Enterolab testing - but I also cut out all gluten 100%, the moment I found out (through this forum) that it might be a factor. The Enterolab confirmed my suspicions about gluten, and other foods to which I have IgA antibodies, and also I found out I have celiac and gluten-intolerant genes.

If your MC was brought on by taking one of the medications that are known to be associated with the onset of symptoms, then it is possible that wheat/gluten might not be a factor for you. But for many people, even if the disease is triggered by a drug, that trigger also "turns on" the underlying gluten sensitivity, and going off that medication does not flip that switch back.

I do not find the diet hard at all (and I am super-strict - I rarely eat any grains at all, nor any soy or legumes). I even eat out occasionally (this week more often than usual) and find there's a lot of awareness and help from restaurant staff in choosing safe meals. What I found hard - those horrible symptoms. The diet is a relative breeze

Good luck,

Sara

[scrowley]

thanks, i really don't want to go gluten free to be honest since when i ate these foods before drugsm it made me better.
i have 2 small kids and bake for them all the time.
my husband still thinks there is nothing wrong with me and its all in my head even though i have results to prove him wrong so he is not on for the gluten-free either and i am in the middle of waiting on layoffs at work so money is tight for enterolab testing but i will look into it for sure.
thanks again for everything, i really appreciate all the input.

[scrowley]

I also feel that if i give up bread etc, what else is there left for me to eat?
when not on the entocort, i stay away from diary, wheat, cereals, chocolate, caffeine, alcohol, lots of fruits, veg, cakes, cookies anything you buy in the shop pastires etc.........
maybe i am almost there in the GF dept except for the bread and the oatmeal???

i feel i will loose even more weight!!!!!!!

[tex]

Trust me, we all felt the same way, at one time, but being sick as a dog can be a strong motivator. After a year or two, (or more), it tends to wear you down, and it slowly changes your perspective, and your priorities, (to say nothing of your energy, and your ambition). Those who aren't as sick, have a much tougher time being disciplined about the diet. I guess that implies that those of us who are the sickest, are the lucky ones, because we never have to wonder if we're doing the right thing by changing our diet. We're willing to do just about anything, to get our life back.

Tex