Musings on gluten

[mamagotcha]

So... my mother had a constellation of symptoms that eventually killed her. One of the worst things, for her, was the constant brain fog that clouded her focus (she was a nursing practitioner and had finished law school... her brain meant a LOT to her).

When she was towards the end of her life, I asked her physician if she could possibly have

Comments

[mh75]

seems like it would be worth getting tested for celiac...

[mamagotcha]

Why? The blood test is notoriously inaccurate (up to 80%, by some estimates), I have no desire to do an intestinal biopsy, and my current doctor cannot even figure out how to renew my light therapy prescription (fortunately, I can override the cutoff on the machine) or CPAP filter re-order (We just paid out of pocket... yes, I know I need a new doctor). I am experiencing good results from a gluten-free diet... ataxia is nearly gone, joint pain much improved. Just running a test to confirm what I can clearly see via empirical evidence would be a waste of resources. If I were at a crossroads... do I do A or B?... and needed more information to make a decision, then pursuing other testing options might be worth it (stool samples, etc). Until then, I'm feeling OK with being my own advocate.

[mh75]

That wasn't like a 'don't do this without doing a test first', but rather a 'would be interesting to know if you can pin it down to that cause'. My understanding was that there was a definitive test for celiac disease, whereas the effects of dietary changes are prone to placebo effects, and confounding variables. Forgive me if i am wrong.

On the other hand, it always seems like if you can find something that works in your life, and its at no cost to anyone else, why not pursue it. I hope it continues to work for you.

I do wish you could find a doctor who didn't frustrate you so much. That just doesn't seem fair.

[mamagotcha]

Bill and I were talking about that last night. I need to get back onto that search. Thanks for the nudge!

[roshismomma]

Sorry I hit send before I meant to ... of course, I am all for going gluten free if it helps you without the test. But once you go GF, the test will likely not be accurate again. Just so you know that part. I don't mean to be unsupportive. Just our experience. And if you do go GF and want any guidance or recipes or whatever, I'm happy to help.

[mamagotcha]

Thank you so much... if you want to shoot me some of your favorite websites or books, I'd be so grateful!

[roshismomma]

For you, oh foodie sort of person, I think the best resource would be http://www.glutenfreegirl.com. She's awesome. I also like http://glutenfreegoddess.blogspot.com/ and http://www.elanaspantry.com.

Those are more about food. If you are concerned about how to remove cross contamination from the kitchen, or gluten related health problems, or whatnot, that's a different set of links...

[mamagotcha]

I am still baking all the bread for our family, and I've invested too much time in learning about sourdough to toss it out the window! I am also trying to notice what amounts do what things... my feeling is that I have an intolerance rather than a full-blown allergy (I don't get most of the, erm, more exciting symptoms, thankfully). I've noticed that when I eat a piece of toast or any pasta, I feel drunk and stupid for several hours afterwards. But I'm not to the point where I'm feeling like I need to avoid every jot of gluten to be healthy, so I'm not stressing over salad dressings (yet, anyway). I'm wondering if, by staying away from the E-Ticket gluten rides, there could be an unwanted side effect of actually becoming more sensitive to smaller amounts (like what happens when I'm off caffeine for a while... it just takes a little to get a buzz going).

I'll enjoy digging through those sites, and I thank you for your time and kind words!

[roshismomma]

Sure. The gluten free girl in particular is a baker, so, you might dig her stuff.