lonewolf

I don't know the answer to all your questions, but I do know that my Naturopathic doctor had me take Ultra Clear Plus and it helped a lot with joint pain and and a few other symptoms. It is expensive, but I would take it. Also, the guy on quackwatch.com has been sued and ordered by a judge to stop his slander of alternative doctors.

Is your doctor a naturopath?

Liz

If you have Celiac, then its all or nothing. Wether or not you react is NOT A GOOD TEST. If you have celiac, every crumb does damage, wether or not you "react" to it.

If you do not have Celiac, then why do you react to wheat? Have you been tested for an alergy?

I had an ELISA test done almost 10 years ago, which confirmed to me what I had figured out on my own - that I was "allergic" to wheat, dairy and soy. Also showed positive for eggs, which suprised me. Anyway, I eliminated all those foods at that time. Over the course of the last couple of years I figured out that all gluten-containing grains actually bothered me, but I figured since I didn't have Celiac, I didn't have to worry about all the "hidden" glutens. I really didn't know anything about celiac disease before discovering this website and sat here shocked by reading other people's stories that could have been mine. (Lots of cavities as a child, thyroid problems, diagnosed with IBS, etc.) I decided to try being "fanatical" about it right before Thanksgiving and see how I felt. I do feel better, but I'm wondering how careful I have to be if I don't have the Celiac gene. Obviously, if I do have the gene I will continue to be fanatical and watch my children more carefully. They were just all tested last week and all showed negative on the Celiac panel. I'm just trying to plan ahead, and figure out a "what if" plan.

Liz

I finally got in today for testing. After waiting for weeks just to get in, and worrying that I would be labeled a hypochondriac, my doctor was wonderful. She is up to date on Celiac and was surprised that I hadn't been tested for it before. I've only seen her a few times before and she was aware that I have troubles with wheat, but we had never gone more in depth than that. We both did some research before my appointment and she wanted me to have the Celiac panel done, even though I've been wheat free for almost 10 years and firmly gluten-free for about 5 weeks. I'm expecting that to be negative. She also agreed that the genetic test from Kimball Genetics would be a good test, since my insurance will pay for at least part of it and it will help me figure out if this is something I can pass on to my kids. (I do know that there are other genes that this test won't identify that can be passed on too.) I'm ready for the possibility that I don't have celiac disease, but rather some other type of gluten intolerance - all I know is I can't eat gluten.

But I do have a question for all of you with much more knowledge and experience. (I know that this has been touched on in other posts.) If I test negative for everything and don't have either of the celiac genes, is it as important to completely eliminate EVERY little speck of gluten? Seriously, there is a huge difference between being gluten free and watching every morsal of food that might have even touched something with gluten in it. I know that many of you have to be that careful or you have horrible symptoms, but I don't think I have such severe reactions. I haven't knowingly ingested even a crumb for the past 5 weeks, so I might react more strongly if/when I do. In the past, I only noticed reactions to significant amounts - like eating a whole spelt pancake or cookie. Do any of you who are gluten intolerant, but not Celiac react less violently that people with true celiac disease?

Liz

I coped by taking a main part of the meal. I baked a 24 pound turkey, complete with gluten-free stuffing and made the gravy with rice flour when I got to my sister-in-laws. Granted, it was a little bit of a hassle to transport a steaming hot turkey, but it worked. I ate turkey, stuffing, mashed potatoes and gravy with NO worries. I got to the salad first before it could be contaminated with anything. My sister in law made green beans with nothing added. I stayed away from the appetizers, didn't need the calories anyway. Oh, and I made some gluten-free spritz cookies too, so I could have dessert. Everyone ate the stuffing and cookies and said they were great, no big issue of them being gluten-free. I don't trust people to cook for me, so I just offer to help a lot.

Liz

Hey guys,

How did you discover you are intolerant to soy? Was it allergy testing or trial and error? Also, what other symptoms do you get?

I tried drinking soy milk when I suspected I was allergic to cow's milk. Big mistake. I reacted with worsening joint pain (I already had arthritis), upset stomach and just feeling yucky. When I did an ELISA (Great Smokies Lab) test for IgG food sensitivities several weeks later soy was the 2nd highest reaction, next to gluten. That was almost 10 years ago and I still don't tolerate it well, although most of my soy consumption has been in the form of soy sauce, which I didn't stop to think contained gluten until recently.

Liz

Well, I've found breads that are really quite good. I think the problem for you is the elimination of eggs along with the rest. Gluten free breads have come a long way. I'm really happy with the Kinnikinnick breads, and I'm not making sacrifices in flavor, texture and size. It's got to be the other restrictions your allergies present that leave you less that thrilled I've had a great dialogue with the reps at Kinninnick over some things. I would suggest you email them and ask them to try to work out the problem with that Robin's brown bread. You will not get back a form letter. Someone will actually listen to you, want to know what's lacking and they may even be working on it now. I'm almost positive you will have a good feeling after talking to them.

I'm sure you're right about all my restrictions making it harder to find a good bread. I think I'm pretty much stuck for now. I am hoping that some day I can "get back" the eggs, milk and soy. That would open up a whole new world of eating. If I "only" had to eliminate gluten, life would be so easy ! That said, there are lots of others in the same boat as I am - with further restrictions that just gluten. And it makes it much harder to find a decent bread. I'm wondering if anyone has had better luck than I have?

Liz

Well, which bread did you order????? We like the "white sandwich bread". Have you tried the donuts, pizza crust, or bagels. I've got to tell you, the chocolate chip muffins are devine.

I got the "Robin's" brown rice bread. I'm allergic to eggs, soy and dairy, so that eliminated almost all the Kinnikinnick products. I've never liked white bread, so I don't know if I could stomach gluten-free white bread. The K-Too's only have soy lecithin, which I can handle. Believe me, I'm thrilled with these, so the whole order wasn't a total loss.

Liz

Gluten free bread isn't the same, that's for sure. I know that a lot of people here like Kinnikinnick breads, and maybe the ones that contain eggs, dairy and soy are good, but their "Robins" brown rice bread is yucky. I've had the best luck with Ener-G Brown Rice Loaf. It's gross unless you toast it, and then it's not too bad. Not like real bread, but since I haven't had any real bread for 10 years, I'm not as picky as some. I toast it in the morning and take a sandwich to work sometimes even. It's best as "fresh" toast or made into grilled cheese sandwiches (don't toast it first) or spread with garlic butter and toasted on a pancake griddle. I also cube it and dry it in the oven to use as croutons or stuffing in a turkey. I'll be making the Christmas Eve turkey and everyone will have stuffing made from Ener-G and my homemade cornbread. On Thanksgiving I had more compliments on the stuffing than for anything and I was the only one who had to be gluten-free.

You can't expect gluten-free bread to be the same. It's one of those things that you'll have to get used to. And really, bread is such a small part of life. (I say this with a sigh - I used to make homemade bread constantly, starting from age 15, and was "famous" in our family for making the best breads of all kinds. It really was the hardest thing to let go of.)

Liz

YUUUUMMMMMMMMYYYYYYY! My K-Toos just came and I ate 4 for breakfast before remembering that I'm the mom and I shouldn't do that. I haven't had anything even resembling an oreo for 10 years, so I am on cloud nine. I can hardly wait to give a couple packages to the little girl at school who has Celiac. (I'm a teacher.) I'm going to wrap them up in Christmas paper and deliver them.

But a side note on Kinnikinnick bread - I ordered 2 loaves of that too, and no offense to all of you who love this company, but the bread isn't good at all. I'll take Ener-G Brown Rice Loaf over this any day.

Liz

Please don't quit. I wouldn't want anyone to be where I've been - hurting and sick all the time - even if I don't know you. I agree with the others - let us know your whole situation and maybe we can help. People here really can understand how discouraging this all can be. Let us help you lighten your load. "Shared sorrow is half sorrow, shared joy is double joy."

Liz

Hey Lonewolf,

Did you ever do another attempt at these cheese rolls? I am going to try some this afternoon. I just made a trip to the Asian market, so I know I have plain tapioca starch. The pictures look so yummy.

I tried them again and added 2 tsp. yeast dissolved in 1/4 warm water to the dough after it had cooled a bit and then let them raise for about an hour, maybe a little bit more. They were better, especially after they cooled a while. The whole batch was eaten, so they weren't a total loss. I still think they could be better... I'lm going to try again sometime.

Good luck!

Liz

On one hand I'm relieved that they're all negative, although I do understand that the testing doesn't rule celiac disease out in the future. I'lm still wondering why 3 of them have ongoing, but minor, digestive problems - they eat REALLY healthy, drink lots of water and get regular exercise, all things that are supposed to keep the systems running smoothly. One daughter has an auto-immune problem (vitiligo) and one son has a bed-wetting problem that he can't outgrow and they both have horrible gas and frequent stomach aches. My son is already off milk and we have tried that with all the kids, but no one else seems to have a problem with it.

So I think I'll just not worry for now.

Liz

Thanks, I think I'll wait until at least the end of next week before calling. Really, it will make Christmas easier on the extended family. Everyone is used to me and my special diet, but it would throw them all for a loop if there were more of "us".

Liz

I just bought a package of Sunspire Chocolate chips. They have no gluten ingredients listed, and they don't say that they're made in a facility that uses wheat or anything, but then it says, "Not guaranteed gluten free". Has anyone else ever tried these? Is this a CYA thing? Maybe I'll just get another brand.

Liz

I had my kids in on Monday morning to be tested (Celiac panel) and forgot to ask the doctor how long it would take to get the results back. Before I call to pester them, I thought I'd ask you all how long it has taken for your tests. I'm thinking I don't even want to know until after Christmas at this point, but the kids keep asking.

Thanks,

Liz

Thanks Tiffany! These ALL look GREAT! I've been looking for a good rice pudding recipe - I'll be making this as soon as I can get the arborio rice. Thank you for putting in so much time to do this.

Liz

Amen! I'm a PE teacher and I am all for 2 recesses a day, regular PE, minimal or no junk food in schools and for parents to join with their kids walking, running, bike riding, swimming, etc. It is up to the parents to make sure that their kids are getting exercise and not spending 5 hours a day watching TV or playing video games. And high schoolers need PE daily - not just the kids in sports.

Beginning in (I think) 2007, all public schools that get any kind of federal funding must have a wellness plan in place. That means they have to figure out how to help their students get healthy by making sure they have recess and PE and have healthy lunches. This is a step in the right direction, but I'm afraid a lot of schools will get around it by having a plan, but not implementing it completely. Big junk food companies make a LOT of money from schools with their machines and don't want to be kicked out of those schools. I'm hoping that they will be accomodating by offering bottles of 100% juice, water, packages of dried fruit, trail mix, etc.

If you are a parent - go for a walk with your kids, even if it's just for 15 minutes! Go play in the snow, go swimming, get out your bikes, do curlups and pushups during commercials while you're watching TV, run up and down the stairs 4-5 times during commercials, there's lots of ways you can get exercise with your kids. If you can't get outside easily, go walk at a mall (this can be dangerous with teenaged girls) or find someplace you can all go inside.

By now, everyone knows what's healthy and what's not. Fast food is NOT! White flour, white sugar, hydrogenated oils, fried foods, candy and pop are fine for treats once in a while, but not for daily consumption.

Okay, I could go on, but I think Jnkmnky said it all pretty well.

Mmmm, the chutney looks good!

One more idea - what I'm making for dinner tonight! Mexican Lasagne - Use corn tortillas instead of noodles, garlic and chili powder instead of italian seasoning in the meat and sauce, maybe a little cumin too. Layer like lasagne, with whatever type of cheese you can eat, or you can leave it out. I use goat cheddar and sheep milk romano on half and regular cheese on the other half. (Half of us can handle cow's milk, half can't.)

Liz

Yum! Thanks for starting this thread!

One of my favorite dinners is Curried Chicken with rice. We also like to do a Baked Potato bar, Lentil/Curry soup, Black Bean soup, Chicken and Rice soup, "Camper Stew", Chicken Stew, Chicken Ranchero (chicken simmered in enchilada sauce, served over rice with sour cream).

My favorite dessert: Sharon's Coconut Sorbet from Trader Joe's. It's casein free too!.

Our favorite company meal is a baked potato bar (have guests bring things like sour cream, butter, salsa, things that you KNOW are safe and will be in packages so you can read the labels to be sure) and an ice cream sundae bar for dessert, with regular ice cream and sorbet for those of us off dairy. No one even realizes it's a gluten-free meal! I did this for a large dinner party (about 25 women) and everyone loved it.

Liz

I can't tolerate soy at all, except for soy lecithin. I avoided even it for several years, but then got information from the Food Allergy and Anaphylaxis Network that many people who are allergic to soy can tolerate the lecithin. I don't even try soybean oil, even though it is supposedly safe too. There's a lot of evidence/research that shows that soy isn't really good for anyone, unless it's fermented, which breaks down something called phytates, which is what can cause symptoms like you've described.

Liz

I am not a member of a support group, but am interested in starting one informally. We have a large health food store in the area (Federal Way, WA) that has a "Seminar room" and would probably be open to hosting meetings. I would love to get a group going just to get together to talk, share recipes, whine, etc., but don't have the time to do a big website or do a lot of organizing. We are fairly close to Tacoma, WA, and I know that there is a support group there, but would love to have something more local for people like me who have a family and a job and not much extra time.

Any suggestions? Has anyone else started an informal group?

Thanks,

Liz

I'm glad they worked for you! I haven't tried sugar cookies yet, but I'm planning to sometime before Christmas. (Yikes, that should be like tomorrow!) Don't give up on the other types of cookies. I use the Bette Hagman flour recipe, with a little xanthan gum and make all my cookies that way. I don't like millet or bean flour either, but this really does work well.

Liz

I had all 4 of my kids in this morning to be tested for celiac disease. The consulting nurse had called me several times, asking questions, basically sounding like she thought I was crazy. The nurse who got us started was pretty rude, even my kids commented on it and I started to get worried that I would be labeled a hypochondriac. And then the doctor came in. I handed him a couple of papers about celiac disease, briefly explained why I wanted them tested and he agreed. He is COMPLETELY UP TO DATE! He knows all about the symptoms, lack of symptoms, blood tests (he's running the whole panel) and understands non-celiac gluten sensitivity and the whole genetic thing. He said that he has had several new celiac disease dx's lately and is concerned that it is so under-diagnosed. I was so amazed to have him be agreeable that I just about fell over. The nurse came back in to take their blood and was much nicer. I was so worried that I was going to have to make a case for why they should be tested that I wasn't even prepared for this! Hurray! Now, I don't know what the results of those tests will be, but at least we're a step in the right direction.

Celebrating near Seattle,

Liz

Thank you!!!

Liz

Hi all,

I'm taking all 4 of my kids to the pediatrician tomorrow with a request that they all be tested for Celiac. I'm already getting the feeling that the clinic thinks I'm a little crazy. I rarely take my kids in for anything, my 14 year old hasn't seen any doctor for 2-1/2 years, my 12 year old not for a year and the younger ones only once or twice in the past 2 years. The nurse who called me several times obviously knows absolutely NOTHING about celiac disease and can't figure out why I want them tested if they don't have serious problems with diarrhea. So, my question is...

Does anyone know of a brochure or simple 1-2 page write up about celiac disease that I could take with me to show the doctor? I have lots of information, but I don't want to go in with the WSJ article and have him think that I'm just a hypochondriac. I still haven't been tested, because when I called my doctor weeks and weeks ago, they said they couldn't get me in until the 22nd. Funny, when I've needed to be seen in the past (it's been at least 2 years since I've been myself) I've been able to get in within a couple of days. I wanted to get tested first and then be able to tell the pediatrician that I have celiac disease (or gluten intolerance or something they will believe) and I wanted my kids to be tested. There is no question that I have a problem with gluten, but I have no "offficial" diagnosis.

If my kids were younger, I'd just put them on a gluten-free diet, but you can't just do that to 12 and 14 year olds without good reason. They are agreeable about being tested, and say they will stick to gluten-free if they have to, but only IF they have to. Those of you with kids know that you can't make a 14 yo do something they don't want to do without a REALLY good reason.

Any suggestions? I know this is a late request, but the appointment time kind of snuck up on my with my hectic week last week.

Thanks,

Liz