Any experience with gluten free?

[HeatherS]

Mikaela-
Why not have them do the GI biopsy at the same time as the lung biopsy?  Get it all done at once? 

[Blessed1jts]

Hi mikaela,

I had both biopsy and blood work done and they all came back positive.  I am extremely sensitive.  Typically, I feel the effects within 10 minutes of digesting anything with gluten and soy. Grains tend to get stuck in my throat; with rice giving me the feeling that my throat is one why closing.

[Sleepy In Seattle]

I am gluten and dairy intolerant/sensitive - many immune sensitivities won't show up on blood work or in biopsies. It just means that your immune system reacts badly to gluten and/or dairy (or soy or whatever). Funny there was just a radio show I was listening to this morning about IBS and food sensitivities - they are developing some new tests for them, but most of the current ones only show true Celiac or true, life-threatening allergies - but miss a whole lot of sort of mid-level immune/inflammatory responses.

It was my GP who mentioned it might be a good idea to eat a little bit now and then to prevent immune overreaction (basically having things turn into a full-blown allergy). I didn't probe a lot as to what he meant, because I am not super-strict anyway, and what he said made sense to me. My husband has horrible allergies and went through years of allergy shots - basically controlled exposures to things his immune system over-reacts to - in order to get them under control. I have also read elsewhere that when you strictly avoid gluten you tend to get more sensitive to it. But that's for sensitivities, not true allergies or Celiac.

For people with Celiac, you HAVE TO be strict - because even a tiny bit damages your intestines. And of course if you have a life-threatening allergy, you have to be strict. But it seems like there are a lot of us in between, and honestly I don't think they really KNOW how it all works...a lot of this stuff has just really been coming to light in the last few years. So I am approaching it with some moderation....I know I am not extremely allergic, and I know I don't have Celiac...I am somewhere in that vague category of gluten and dairy-"sensitive" - so I try different stuff and go by what my body feels like and what my blood tests show for systemic inflammation.

All I can say is that since I have been eating this way, I feel better - more energy and less achy/fatigue/night sweats/sleep disturbances/bladder sensitivity/etc. - and when I eat more than a little bit of gluten or dairy (more than the size of a dice, say...) I feel lousy. Also, my bloodwork has looked pretty dang good lately. I never had horrible dryness anyway, so I can't speak to that (my Sjogrens is secondary to Lupus). It does seem like maybe I have a little bit more tears, and I don't wake up at night to drink water 15 times like I used to (I still wake up two or three times usually, but that's not bad!) - but I don't know how much of that is the diet and how much is the medication (I take Plaquenil and Methotrexate).

I hope that helps somebody...this stuff is different for everybody. I think in the end you just have to work with your doc and watch carefully to see how your body responds.