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Skylark last won the day on July 13 2012

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  1. I just took this and got a negative, I have been gluten free for two weeks but have been eating gluten since last night (and think I accidentally did a few times in the two weeks). Should the test be accurate if I have been eating it since last night, or was I too quick, do I still need to wait two weeks, or can I say it's intolerance now not celiac?

    The home tests are better for finding celiac than for ruling it out. TTG tests are 80% accurate. There is still a 20% chance that you are celiac so no, you shouldn't assume you are intolerant.

  2. Your kids' response to the diet means a LOT more than fecal IgA. It's not a terribly reliable test, though a result of 144 is certainly interesting. Little kids don't always have a strong immune response so the older's test results might simply be a reflection of his/her more mature immune system.

    As other folks have said, you can't have them tested for celiac once they're off gluten. If your insurance won't cover celiac panels and it's beyond your means, you might consider getting a home TTG test kit and at least testing the older who has a lot of fecal antibodies. http://www.glutenpro.com/

    I hope going off gluten helps their stomach-aches! Obviously follow your naturopath's advice as far as tapering and how long to try the diet once you've done whatever celiac testing you feel is appropriate.

  3. My chiropractor wrote a 3 page report about me for my family. It explained that 5 years ago I was dying, or something terrible. Maybe my family needs space to guess to come around. If I get beyond the point where my body is working so hard maybe they will be impressed with the recovery?

    It has happened to other board members so don't give up hope. Just get well and set the best example you can. :)

  4. I found this on their site:


    I don't really understand what they mean by: "the wheat proteins are removed or de-natured by the soy sauce manufacturing process and therefore there is no longer any detectable gluten present."

    That makes it sound like any soy sauce would be ok.

    As I said above, "not detectable" assumes the test for gluten works reliably on soy sauce. It doesn't. Eat at your own risk.

  5. My MD already has told me all of my children should be gluten free. However, my husband and they are not ready. I am doing all I can. My body also seems to be doing all the reacting it can. Life is being very hard.

    Sorry to hear that. It must be frustrating, especially the reacting. Maybe this will be easier to take on when you are feeling better.

    Has your doctor spoken to your husband? Maybe he'll believe better if he hears it first-hand?

  6. Oh gosh, that sounds terrible! Most of the celiac tests look for autoimmunity so it seems to me that your immune suppressants might mask celiac disease. Celiac can really mess with calcium absorption and cause osteoporosis. It's also a risk factor for duodenal tumors so to my way of thinking it sort of all fits together. Gluten intolerance is also pretty common and it can cause a lot of inflammation and stomach trouble with negative celiac tests so that could be your issue too. I'm glad your doctors had the sense to try you on the diet and that it's helping.

  7. Some naturally fermented soy sauce gets broken down by the cultures to where the gluten is below detection limits. Problem is, the tests don't work right on broken-down gluten so you can't really know whether the soy sauce is safe. Since the laws don't take the subtleties of gluten testing into account they can be legally labeled gluten-free. I personally wouldn't eat them.

  8. It took my mom a few years to watch me get well and then take the plunge herself. She denied feeling better on the diet for a good six months but got sick every single time she ate wheat and finally accepted that she needed to be gluten-free.

    By the way, if you are talking about minor children, I think you need to put your foot down and get them tested for celiac, by blood and genetics. They're at high risk if your 4 genes are double-DQ2.5.

  9. Thanks Jestgar,

    It's nice to see there is some research being one on wheat sensitivity without celiac disease. NCGI is what I usually call those symptoms. Leave ti the researcher s to invent a different term though. :)

    In this study the challenge was with wheat, not pure gluten, so using the phrase "gluten sensitivity" would be incorrect. Top-level researchers use very precise language to try to describe exactly what they observe, not what they might assume.

  10. I went to a 100% gluten-free restaurant in Asheville. It took me about ten minutes to decide what to order because I'm so used to not having any choices. :lol: Food was excellent and the restaurant was plenty busy. They're using local, sustainable food too so they appeal to a wider market than just celiac/gluten-free. They bake all their own breads, muffins, and bagels too.


  11. Yeah, the jury is still out. I had a really strong response to eggs on an IgG test so I have to eliminate/challenge to be sure. Thing is, I tend to feel really awful on Monday and I usually make omelets or bake on the weekends. <_< I also came up positive for soy on the IgG test and I know soy doesn't agree with me. Dairy came back negative so I'm praying I've been mistaking egg reactions for dairy and I'll have dairy back. I'd happily trade eggs for dairy!

    Thanks for the help! I'll try the chia/buckwheat/coconut milk in a few days when I get a chance to shop for them. That sounds better than the methylcellulose in the Ener-G stuff. I really prefer cooking from whole foods. :)

    Beans for breakfast isn't a bad idea, though that's usually what I have for lunch. I'm also eyeing my jar of peanut butter.

  12. Thanks! I can do guar gum, psyllium, and chia. I forgot you can sub chia for eggs. I'm going to play with flax too. Cow dairy is iffy, sometimes I react sometimes not. I seem to be back to tolerating goats milk so might be able to find goat sour cream.

    I can do enough starch to try the Ener-G egg replacer. I might give that a go in my regular almond meal recipe.

    Amaranth or buckwheat taste great and that recipe looks tasty but it's still kind of a heavy carb load for me in the morning. If I eat too much starch at breakfast I'm pooped and starving by lunch. Maybe if I just have one with some sausage... This no-egg trial is a pain. Fooey.

  13. I've just been reading that some research is showing that the protein in coffee is cross reacting with the gluten antibody in our intestines. As your intestines heal the antibody levels drop and so the cross reactions slow and eventually stop.

    Can this be true? I suppose it's possible. It would explain my mystery.

    There is no such research. It's an urban legend that has cropped up on the internet recently. I have looked up all the supposed scientific references and they say that coffee allergies and reactions are actually quite rare. <_<

    Coffee is a bit of a GI irritant and it's hard on folks with stomach trouble. It was probably too much for your system to handle. I used to be told to give up coffee because I had "gastritis". Pity my doctors never told me to give up gluten.

  14. I'm gluten-free, dairy-free, low-grain

    Breakfast - Coffee with coconut milk, eggs and fruit. Maybe almond flour muffins if I'm not too lazy. Today I was running late and had a Larabar.

    Lunch - usually frozen homemade meat/veg soup or bean soup. I usually throw some cut veggies and a small baggie of nuts into my lunchbox for a snack. Sometimes dinner leftovers.

    Dinner - Some sort of meat or fish, currently have a baked chicken in the fridge and some grass-fed beef burgers in the freezer. Fresh, cooked in-season veggies with ghee or a drizzle of olive oil or a big, crunchy salad. Fruit for dessert. If I'm wanting something carb-y I make a sweet potato or a little rice.

  15. Makes perfect sense to me, & I'm sure same too many others here.

    I had to also go soy-free before getting the HUGE difference in wake-up mental state.

    Wondering which new great things might be placebo-ey(sp?) is a fun game. :D

    I play that game. Placebo effect works wonderfully for me for about a week. If only I could come up with new, safe ideas weekly... B)

  16. I think gluten-free sounds like a great idea with the autoimmunity. I have Hashi's and I'm kind of scared of thyroid cancer. My endo says it's rare though.

    Whole foods is a GREAT choice for getting started. It's super easy to make gluten-free salads, roasted meats (I like arrowroot starch to thicken gravy), or stir-fry with gluten-free soy sauce. Snack on cut veggies, nuts, cheese if you tolerate dairy, or fruit. For breakfast, eggs and home fried potatoes are always good.

    I'd suggest getting rid of flour in the kitchen. The stuff gets everywhere. You can buy all your baked goods premade and crumbs are much easier to clean up than flour. If you want to bake with the kids, do it gluten-free. Get your own condiments like mayo and butter or put them in squeeze bottles so they will stay crumb-free. Same with peanut butter and anything eaten on bread or crackers.

    Get a separate toaster or get some toaster bags to keep your gluten-free bread safe, and get a separate cutting board. Gluten can get caught in all the fine grooves and knife marks in cutting boards. Also beware of porous things like wooden spoons and anything made of wire mesh like colanders and sieves that can trap gluten between the wires. Muffin tins or baking sheets that are too old to get perfectly clean and seasoned cast iron is not safe for you either. Chances are good your charcoal grill has gluten on it as well. Paper muffin cups, baking parchment, tin foil, and toaster bags are all great tools to prevent CC in a gluten kitchen.

  17. Can anyone tell me if Hangar One vodka is gluten free? I thought any hard liquor that is distilled (which it is) is automatically gluten free? Am i wrong? Ive tried contacting manufacturer but havent gotten a response. Any help is much appreciated thanks!

    Distilled grain liquor has no detectable gluten and is fine for almost everyone with celiac disease. Very rarely, people who are super-sensitive to gluten find that they react to distilled foods like grain alcohols or vinegar. On the off chance you react to Hangar One, which is a wheat vodka, see if you do better with a potato vodka like Blue Ice or Chopin.

  18. I usually look for restaurants that have gluten-free options. Just ask for the gluten-free menu. If you're really nervous you can ask what precautions they take to prevent cross-contamination of gluten-free food with wheat. I generally don't bother, though if they have fried foods listed as gluten-free I ask whether the fryer has been shared with wheat breaded foods. You'd be surprised how many places are unaware that frying oil CC is a big issue for celiac disease.

    On the rare occasions I'm stuck eating in a restaurant that isn't gluten-aware, I say I have a wheat allergy. They can usually tell me what foods are safe, but sometimes the only things you can be sure of are salad and a baked potato.

    You have to accept that sometimes your daughter will get glutened eating out. Do your best, but be aware there is always risk when someone else prepares food.