dietary changes

[Guest pandas16]

How many here really strictly strictly stay with them with absolutely no going back... or every once in a while do you allow that forbidden food

[MichaelTampa]

I have been a vegan for many years and stay strict with that. On other dietary changes, like avoiding sugar, I am strict at home, but then at the restaurants once a week, I am sure they are putting sugar in things, so in that sense I am not strict.

[SSS]

It depends on what food issues are present, and why you are taking them out-

for instance, if you have celiac disease, no, you can never go back to eating gluten.

If you have an IgE allergy, no, can't have the food.

If you have a leaky gut or food intolerance, and remove gluten, because it is causing an opiate effect and high inflammation, it is wise to heal that leaky gut first, and it takes time, and abstaining 100%, before going back to gluten, or dairy.

Sugar is wise to avoid if on antibitoics, or have yeast issues.

[Suzan]

I have found that carbs, sugar, alcohol really make me feel bad. If I stay with it, I feel much, much better. Yesterday was my daughter's birthday party and I ate ice cream and gluten free cake. I feel horrible today and the pain started before I even went to bed. For me, I am learning it does not pay to indulge. I'm getting better at realizing that before I eat it.

 

Susan

[momcap]

We did casein-free for over a year in 2008-2009. No exceptions at all. I carried a long list of every ingredient that could possibly have casein in it, and checked every label. Eventually shopping just got too time consuming, so I started cooking everything from scratch, using only basic ingredients so I wouldn't have very many labels to check. The whole family went on this diet (because I wouldn't cook 2 meals at a time), but it was for our youngest DS who had asthma and chronic ear infections. On day 3 of the new diet his "asthma" went away and never came back. I never would have believed it if I hadn't seen it with my own eyes. And it was serious asthma too - overnights in the hospital, puffers, etc. He never had another ear infection after that either. Coincidentally, our oldest DS who has PANDAS did much better that year. He had very few colds that winter and had a good school year. He was not completely symptom-free, but much better than the years before or after. The year before that he had selective mutism and wouldn't speak at school. The year after that "the wheels fell off" and he was in one full-blown PANDAS exacerbation after another, until he couldn't attend school at all. It took another 1.5 years before I heard about PANDAS and had a clue what we were dealing with.

 

After more than a year casein-free our doc suggested working it back in slowly to see if our youngest could tolerate it now. We added a little at a time, very gradually over the next year, and now he eats anything without trouble. I have often wondered if we should go casein-free again to see if it helps PANDAS DS again, or if that was just a coincidence. We also started taking probiotics that year, among other things, so I'm not 100% sure.