Bragg's, anyone?

[KnottedYet]

The endoscopy can also give false negatives, especially if someone has strongly patchy villi destruction. If the scope misses the patch, and all the GI sees is lovely furry intestine... false negative.

People who get the herpetaform dermatitis can have that biopsied instead. Docs will recognize the tongue patching as celiac, too, but there is no standard for biopsy of the tongue.

23andme.com will do the celiac genetic test for a lot cheaper than the one your doc could order; but you'd still need it confirmed through the MD. More money down the tubes.

Blood antibody test is easy and cheap. If it comes up positive, end of story. If it comes up negative but your doc still suspects celiac, you'll probably be ordered the endoscopy or a 3-4 week gluten-free trial. If the endoscopy comes up negative but the doc still suspects celiac, you will be put on the 3-4 week trial.

It is very easy to survive without gluten. Entire civilizations through-out all of human history have done it.

It is very easy to eat out, you can always find something to eat even if you can't get to a restaurant you know comes from a non-gluten grain culture.

There is no temptation to cheat on the diet, because it is so not worth being sick and dizzy and itchy and rashy and lightheaded and migraine-y with a mouthful of sores and struggling with "gluten brain" for a week, just for a bite of bread. (I have panicked nightmares that I've accidentally eaten a pastry.)

There is a good bit of media hoo-rah around gluten-free right now, because so many people have lost weight or gotten healthier by cutting out gluten. They were probably all undiagnosed celiackers. Gluten itself is not a bad thing. It's only bad for folks who don't make the enzymes to digest it, and whose bodies (for what ever trigger) suddenly decide to attack gluten as an infectious invader and thereby catch the small intestine, nerves, brain, mucosa, skin, and other ectoderm-derived tissues in the cross-fire.

The important take-away from all this is that anyone suspecting a gluten problem must have guidance from an MD or nutritionist before experimenting, like Groundhog and I had. Just switching your sandwich to gluten free bread isn't gonna do it, it's a large and complicated dietary change to make in our wheat-centered culture. But once you know how to do it, it's easy to maintain.

ETA: fun trivia. The Catholic Church won't ordain celiackers, because they can't eat the wheat eucharist and so have been rejected by God for priesthood. I find it deeply ironic, as this is a prime example of the legalism which Yoshua ben Yusef was so strongly against. Laypeople can have rice or oat wafers.

[Trek420]

I think celiac or no we all can benefit by fewer or no processed foods. HFC syrup sneaks into nearly everything. Read labels! Bringing my lunch to work most days I dropped 9 lbs* just being more in control of ingredients. The places I'd eat are small, local independents. No chain eateries near my work, well .... now there's a Subway and a 'Bucks. But I can't control if there's HFCS in whatever they use.

Not saying go vegan, or raw foods or do anything different .... it's just good to read the labels and eat food that's made from food. Obviously no label on an apple, peach or broccoli.

But meanwhile do communicate this and any concerns to a doctor, nutritionist.

*then put 4 back on when Knott was here oh well.

[Groundhog]

The endoscopy can also give false negatives, especially if someone has strongly patchy villi destruction. If the scope misses the patch, and all the GI sees is lovely furry intestine... false negative.

People who get the herpetaform dermatitis can have that biopsied instead. Docs will recognize the tongue patching as celiac, too, but there is no standard for biopsy of the tongue.

23andme.com will do the celiac genetic test for a lot cheaper than the one your doc could order; but you'd still need it confirmed through the MD. More money down the tubes.

Blood antibody test is easy and cheap. If it comes up positive, end of story. If it comes up negative but your doc still suspects celiac, you'll probably be ordered the endoscopy or a 3-4 week gluten-free trial. If the endoscopy comes up negative but the doc still suspects celiac, you will be put on the 3-4 week trial.

It is very easy to survive without gluten. Entire civilizations through-out all of human history have done it.

It is very easy to eat out, you can always find something to eat even if you can't get to a restaurant you know comes from a non-gluten grain culture.

There is no temptation to cheat on the diet, because it is so not worth being sick and dizzy and itchy and rashy and lightheaded and migraine-y with a mouthful of sores and struggling with "gluten brain" for a week, just for a bite of bread. (I have panicked nightmares that I've accidentally eaten a pastry.)

There is a good bit of media hoo-rah around gluten-free right now, because so many people have lost weight or gotten healthier by cutting out gluten. They were probably all undiagnosed celiackers. Gluten itself is not a bad thing. It's only bad for folks who don't make the enzymes to digest it, and whose bodies (for what ever trigger) suddenly decide to attack gluten as an infectious invader and thereby catch the small intestine, nerves, brain, mucosa, skin, and other ectoderm-derived tissues in the cross-fire.

The important take-away from all this is that anyone suspecting a gluten problem must have guidance from an MD or nutritionist before experimenting, like Groundhog and I had. Just switching your sandwich to gluten free bread isn't gonna do it, it's a large and complicated dietary change to make in our wheat-centered culture. But once you know how to do it, it's easy to maintain.

ETA: fun trivia. The Catholic Church won't ordain celiackers, because they can't eat the wheat eucharist and so have been rejected by God for priesthood. I find it deeply ironic, as this is a prime example of the legalism which Yoshua ben Yusef was so strongly against. Laypeople can have rice or oat wafers.

Excellent points, all. I do eat out quite a bit due to career and family and have learned to manage it. Never tempted to cheat.

Re: the Catholic Church...don't get me started. The Church as bad as the Military on gays, celiacs and women IMHO. I've heard that the Military won't take celiacs, (but will keep newly diagnosed celiacs) because field conditions require Meals Ready to Eat (MREs) and MREs can't be made GF. At least that is a reason that makes sense!

[channlluv]

Wow, thank you Groundhog and Knot for sharing so much of your own experiences. I've got a call into my doctor. I'm waiting for her to call me back to confirm an appointment for next week. It's time for a full blood panel checkup anyway, and a mammogram.

I'll post here as things progress.

Roxy