Bragg's, anyone?

[KnottedYet]

You must NOT change your diet before the blood test!!!!

If you stop eating gluten or decrease your usual gluten, you will have a negative test no matter if you have celiac or not.

The blood test ONLY picks up antibodies to gluten. You must be eating gluten for several weeks before and during the test in order for the antibodies to be produced. Some doctors recommend 6 slices of bread a day for 6 weeks before the test.

If you change your diet before the blood antibody test, then your only option is the DNA test, which is not covered by insurance and is a couple thousand dollars.

Please talk to your endocrinologist before you go eliminating any foods.

Plus, if you truly do a gluten-elimination diet, you must have guidance from a nutritionist for it to be effective. Gluten shows up in some bizarre places.

Please, do all the other things for a healthier pattern of eating that folks have suggested. All those great cookbooks, all those lovely fresh fruits and vegetables and whole grains.

But don't mess with restrictive diets of any sort without a doctor's or nutritionist's guidance.

[Trek420]

Lots of good books out there of course and others here will chime in with faves I'm sure. Mollie Katzen, world class chef and the author of the Moosewood books is one of the handful of foodies credited with changing the way America eats (towards food that's made from food).

She's just come out with a book geared towards new cooks. I can't wait to read it:

http://www.molliekatzen.com/get_cooking_promo.php

[tctrek]

I thought gluten might be my problem, but was tested and I actually have no food allergies. But I feel the pain of any women who eats fresh/whole foods, exercises, yet cannot get the needle on the scale to budge. That has been my life for 10 years.

At the risk of thread drift, I will mention here that after many years of inability to lose weight, I asked my doctor if I could go low carb. She said "go for it"... It's been 5 weeks - I did pretty much straight Atkins with 20 grams of "net carbs" the first 2 weeks and adding 5 grams per week. I took 4 days off when we went to the beach, but other than that, I've been staying on track.

What I am finding out is that I am carb-sensitive. Reducing my carb intake has lifted my energy to new levels. No more sleepy afternoons at the office. I don't stand at the vending machine trying to choose between Snickers bar or chips. I have no carb cravings!! I am sleeping better, too and feel energized when I wake up in the morning!

I am riding my bike early in the morning on an empty stomach (not long distances- say under 25 mi.). I'm drinking zero calorie Powerade for electrolytes and I might eat a shot block or two while riding. Then, I have a low carb protein shake post-ride. I'm eating tons of green vegetables, salads with chicken, turkey, fish, lean beef and eggs. I just started eating apples this week... I had eliminated all fruit for the first 5 weeks. I'm drinking about 80 ozs per day of water, green tea and/or Powerade. Stevia in my tea.

Unbelievably I am losing a pound a week. I am the person that could eat 1200 calories per day and actually gain weight!! I'm the one that can ride or go to the gym every single day and not lose weight. I'm post-menopausal and have hypothyroidism and have battled weight issues for 10 years.

I don't know if my stupid body will adjust to the low carb and figure out how to hold on to the weight again, but I am changing forever how I eat. I had blood work done after 4 weeks and my glucose/insulin levels are "perfect".

I recommend talking to your doctor -- I think there are many women out there who are carb sensitive and could benefit immensely from this dietary change.

[Susan]

Over here, we use ACV and pumpkinseed oil for salads - just sprinkle some of the Vinegar over green salad or tomatoes, add a bit of salt and some p.s.oil and toss (just as described above). People that aren't used to this kind of salad dressing find the dark green oil strange in the beginning but most people like the taste in the end.

However I think it would be hard to drink ACV

[Trek420]

Over here, we use ACV and pumpkinseed oil for salads - just sprinkle some of the Vinegar over green salad or tomatoes, add a bit of salt and some p.s.oil and toss (just as described above). People that aren't used to this kind of salad dressing find the dark green oil strange in the beginning but most people like the taste in the end.

This sounds wonderful! Next time I'm low on oil I may look for pumpkin seed oil and experiment with combos in different dishes.

[schnitzle]

Hells yes to pumpkin seed oil!! I think it's delicious in salad dressing. I've also used flax seed oil mixed with olive oil.

Here's my go to salad dressing: In a jar I mix dijon mustard (Beaufor), oil (olive, pumpkin seed, flax or grapeseed), some type of vinegar, grate in a clove of garlic, salt, ground black pepper, maybe some fresh herbs if I have some and shake it like mad. Add it to any salad stuff around.

I could drink the stuff!

I'll be interested to see what your celiac test shows Roxy. I wonder since your doc said you are pre-diabetic if it is more of a carb sensitivity as tctrek posted. I think that is my problem, although I've never been tested for celiac. I'm over 100 lbs overweight myself.

[channlluv]

My family doctor has told me she believes I'm glucose intolerant based on my symptoms (I get really sleepy after I eat white bread, white rice, etc., so I stopped eating white food a long time ago, for the most part. I'll admit I'm not as diligent with my diet as I should be.

TCTrek, I think I may be in your boat, too. What I dread most is giving up fruit for five weeks. I eat a lot of fruit. Already today I've had a banana and a cup of grapes. I've got an orange for my afternoon snack. How long did it take for your carb cravings to go away? And what are "net carbs"?

I need some quick, easy veggie recipes, I guess. I'll go take a look at the new cook book you recommended, Trek. And Knot, thank you for telling me not to change my diet just yet. I was all ready to go out and buy a bunch of gluten-free stuff. Although just yesterday I realized that most of what I eat is gluten-free. Fruit, veggies, lean meats, eggs. I do drink milk occasionally with cereal, but other than that, I'm largely dairy-free, too. I have cheese every now and then. But I do eat bread. I guess too much of it.

If I'm just glucose-intolerant, does that mean I have to give up fruit? I often start the day with grape juice-frozen berry-spinach-whey protein smoothie.

Roxy

[KnottedYet]

These are really things you should be working out with your doctor and your nutritionist.

We are all full of ideas, but honestly you need to be diagnosed by a medical professional before you go eliminating anything (carbs, gluten, topic-of-the-day).

And while we are all full of ideas, with your medical history you really should be doing any dietary changes with the guidance of a medical professional every step of the way.

[channlluv]

I was just thinking I needed to call my family doctor and get her in on this before I move forward. Thanks, Knot.

Roxy

[tctrek]

TCTrek, I think I may be in your boat, too. What I dread most is giving up fruit for five weeks. I eat a lot of fruit. Already today I've had a banana and a cup of grapes. I've got an orange for my afternoon snack. How long did it take for your carb cravings to go away? And what are "net carbs"?
Roxy

Believe me, I thought it would bother me not to have my fruit, and I was a huge fruit eater, but it didn't. The fact is that i did not have carb cravings after the first day. But I made sure I had plenty of food to eat, so I was not hungry. You can eat any of the foods on this page: http://www.atkins.com/Program/Phase1...thisPhase.aspx

Net carbs is basically the Sugar carbs, not the fiber carbs. So, something might have 10 grams of carbs, but if 2g are Sugar and 8g are fiber, you only "count" the 2 carbs when figuring out your 20 grams per day. That's because fiber carbs don't spike your insulin, just the sugar does.

I don't really understand why it works, but it does. The trick is to add back carbs slowly... and stay away from white food and food with high glycemic index.

[Trek420]

I was just thinking I needed to call my family doctor and get her in on this before I move forward. Thanks, Knot.

Roxy

That's a really good idea. I recommend asking her for a referral to a good sports nutritionist or nutritionist experienced with athletes before making any change to your food plan/diet/pantry etc.

[Groundhog]

...And Knot, thank you for telling me not to change my diet just yet. I was all ready to go out and buy a bunch of gluten-free stuff. Although just yesterday I realized that most of what I eat is gluten-free. Fruit, veggies, lean meats, eggs. I do drink milk occasionally with cereal, but other than that, I'm largely dairy-free, too. I have cheese every now and then. But I do eat bread. I guess too much of it.
...
Roxy

The problem with the celiac blood test is that it is not exact enough...or in other words, there are a lot of false negatives and you have to be eating gluten at the time. I, too, was mostly GF prior to diagnosis -except binging on bread. My celiac was picked up via an endoscopy, because I was in so much pain that my doc thought I had an ulcer. No ulcer, but they found celiac with minimal damage (although I felt so bad I didn't think it was "minimal"). But the blood test done right after was negative for celiac- even though I still ate gluten. So I am an example of someone who has biopsy-proven celiac but negative blood work (plus I have the genes). What I'm saying, Roxy, is that your celiac test (or Person X's celiac blood test) may be negative but that person may still have the disease due to the inaccuracy of the blood test.

I agree with Knot to have your doc run the celiac blood panel first (make sure they run the "full" panel) but there is no harm in cutting out gluten entirely AFTER the blood test (unless your doc wants to run the endoscopy) to see what happens. If you cut out gluten entirely, strictly, and you feel better then you have your answer. Some docs say that a Gluten Free diet is "unhealthy" because you don't get enough vitamins, but with proper planning there is nothing inherently "unsafe" about a GF diet. What a GF diet has is less fiber and less vitamins added to grains (e.g. "fortified" cereals or "wonder bread with eight vitamins"). Fiber is easy to get with fruit, veggies and flax (and oatmeal for some) and vitamin supplements are as "natural" as fortified bread. If you or your doc are worried about diet, a nutritionist/dietician can help with that.

My doc sent me to a nutritionist/RD and she said that my body thought it was "starving" because it wasn't absorbing nutrients/vitamins/fat and thus it wanted me to gain weight. My metabolism slowed, my vitamin levels were low, and I developed osteopenia, the beginning form of osteoporosis. The body type that most often gets osteoporosis is a thin one, so my body was really not absorbing calcium and/or vitamin D. The 20 extra pounds I gained in the two years before diagnosis got my BMI up to 29 and so I was one of the 40% of celiacs who are overweight at diagnosis.

Losing weight (I have 20 to lose plus the 15 that I was overweight with before illness) has been frustrating. I am psychologically "addicted" to refined carbs and maybe physiologically too. Cutting out wheat, plus white rice, white potatoes, corn, and GF flours is about the only way that I can loose weight. I don't know if it is from celiac or from years of eating unhealthily, but I can't fight it. Eating simple carbs makes me hungry. In terms of diets, South Beach Diet Phase I or Atkins Diet or Paleo Diet all work for me losing weight...they all cut out the "white" foods.

Some folks think that gluten intolerance is a spectrum between low gluten intolerance at one end to celiac at the other. Others think it is all celiac, but our tests aren't exact enough.

I'm just a layperson with limited knowledge. But I know that gluten has done some pretty nasty things to me and my son, so I just try to get the word out to others and hope that they end up less damaged than I. Going GF has made a world of difference in my health and I'm very grateful.

Again, I wish you good health, Roxy, and good health to all.

[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!