nettiebeads

it's gluten-free, unless processed in a facility that also process wheat. And milled means it's had the outer layer removed. Does that help?

Annette

Awesome! I agree with you re: testing. I never had the blood test; dx'd by diet challenge alone. My current gp thinks that there are too many false negatives from the current standard tests - they are not refined or sensitive enough to ensure reliability.

My celiac DS has a spanish pinata project that they are working on all of next week at school. (10th grade)

He knows he can't partisapate if all the wheat flour is mixed in the room where they are working--- to much in the air to breath in don't ya think?

but I thought if the wheat flour for the others is mixed in another room then he could at least join in on the project if he has his own flour but not sure of right combo of flour. Does anyone know what would work best for paper mache?

I read somewhere that liquid starch could be used instead of flour. I'm not familular with liquid starch, anyone ever used it for paper mache?

Any advice is good advice--------

Devsmom

I googled and found this site. The person used cornstarch in place of flour.

Open Original Shared Link

There wouldn't be any flour floating around, but if your son were to use gloves or something and was very aware of the cross contamination (wash hands immediately after handling stuff so he doesn't accidentally ingest anything) he should be okay. I've made pies with flour and not had problems - but was very very careful

Hope this helps and hope he has fun.

Annette

My celiac DS has a spanish pinata project that they are working on all of next week at school. (10th grade)

He knows he can't partisapate if all the wheat flour is mixed in the room where they are working--- to much in the air to breath in don't ya think?

but I thought if the wheat flour for the others is mixed in another room then he could at least join in on the project if he has his own flour but not sure of right combo of flour. Does anyone know what would work best for paper mache?

I read somewhere that liquid starch could be used instead of flour. I'm not familular with liquid starch, anyone ever used it for paper mache?

Any advice is good advice--------

Devsmom

How about white glue? 1 part water to 2 parts glue.

Have you checked into wall paper paste?

Boy do I understand! I've been on Zoloft for 5 yrs now. My gp was going to try and wean me this month. I tried half a tab every other night for two weeks. At first I was doing great, but that old black nothingness is back so I'm back to full strength Will try again in two weeks or so, but maybe at an even slower pace. But at least I still have something to blame my extra 30 lbs on

Annette

I use the Rexall brand from WalMart with no problems. I feel better on them than off.

Annette

I sincerely doubt it was the Valtrex. I had a "cast iron" stomach my whole life, not counting food allergies (eggs, poultry mostly) until I developed the worst sinus infection in my whole life at age 36 or 37. At the time my life was full of stressors also. I took a prescribed course of Keflex, developed the good ole D common to celiac, but at that time I didn't know what it was, of course. I attributed it to the strong antibiotic. But six weeks later the D hadn't cleared up; went to my gp, was put on the gluten-free diet for starters, the D cleared up, ergo celiac. It wasn't the meds, it was the infection and stress that triggered my genes into full blown celiac. So welcome to the board, if your mother has internet access, have her come here and read all the posts and questions. There's a wealth of information here; I've learned more here since Aug 05 than in the previous 9 or 10 years combined!

Annette

I did the exact same thing! I've been there, too. She seemed ok to me, also.

I emailed a hug to her, too. I'm an ex-Navy wife so I understand those long separations. At least I didn't have celiac at the time I was married to him. Don't know if I could handle both. Whoo, I'm still reeling over that parking thread, and none of it was directed at me! My gosh! I'm glad the rest of us are sensitive and caring... Don't want to go through that again!

Ok, so I had a little incident tonight (see the post about rude people and notes on cars) and I was glutened last night by a chip at a resturaunt....and I am really feeling the effects....but now I am wondering if the glutening could be adding to the emotional rollercoster I am going through. Part of me wants to find whoever wrote that note and hit them. Part of me wants to buy a new car now (so they cant find me or something.....it isnt a rational thought). Part of me is crying (the physical part, LOL). I am a mess. I don't think I would be like this if not for the gluten........anyone else get like this? I am so upset, and on top of it, I am running to the bathroom for d. Ug, this sucks........

Oh yeah, did I ever have the emotional roller coaster rides when glutened. Even a little bit of cross-contamination can put me in a depressed tail spin. (Almost as bad as being a teenaged girl again!) I don't miss them. I think it's more of the psychological aspects of being glutened that keep me on the straight and narrow than the physical. I have learned to ride it out as there is nothing to do for it anyways. Develop a mantra "it's the gluten, not me" You will come out of this so long as you are gluten-free, so hang in there!

Annette

Thanks for all the advice. My son is willing to try the gluten free diet so I think we will make it a go. He has been checked out for other auto immune diseases and tested negative on them - diabetes and thyroid problems so celiac seems the most likely. Does anyone think it is worth it to do the enterolab stool samples too?

Ann

It's quite a chunk of money and you already know his gene type. Think positive - maybe with him off gluten he'll hit a growth spurt and you'll need the money for new clothes!

Annette

I agree with the others. The celiac tests are notorious for false negatives in adults and even more so in children. I'm sure your son doesn't consider himself a child, but physically speaking his age could have skewed the tests. Also, maybe he hadn't been consuming as much gluten as needed for the test's accuracy...myriad of scenarios as to why the negs. My current gp doesn't think that the tests are as reliable and sensitive as they should be. Probably in the future. Anyhow, with his genetic markers, I would strongly suspect celiac. The food diary is a good idea. Also just do a trial gluten-free diet. The diet challenge is a valid diagnostic tool; that's how I was dx'd 9 years ago, nothing else was done. No gluten, no problems. Gluten, problems galore. None of my other dr's since have questioned me or told me I still need to do the "official" tests. Your son is of the age to reason for himself, but I'm sure being male, he would love to be in a higher percentile on the growth chart.

Keep us posted; has he checked out the teen site on this forum? And having family members for him to talk to will help too.

Annette

You seem to have the classic diarrhea of celiac. That's what sent me to the dr--The pale, frothy, floating and oh so very stinky D!. Continue on with the diet and see if you don't notice improvements in other areas such as your energy levels and what is referred to as brain fog. After three months you might try adding back dairy. When the villi are damaged, the part of the villi that is damaged is the part that makes the enzymes that are needed to digest lactose. But what is so great about celiac is that if it is caught in time, (and it sounds like yours was) that the body immediately begins healing itself as soon as the offending gluten is eliminated.

Check your toiletries and meds for gluten. Be on the lookout for wheat starch, wheat protien,oats or sativa.

Beware of cross-contamination. For me it's washing my hands after I feed the dogs - lots of bad stuff in their food. Or I never use cutlery that has been put on the counter in our kitchen at work - someone is always making toast or a sandwich and hasn't wiped the area down afterwords. It's the little pesky things that will trip you up and drive you crazy at first, but then after awhile it will become second nature.

People and medical professionals will urge you to get the bloodwork and endoscopy. You don't have to, especially since it would require you going back to ingesting huge amounts of gluten for a long period of time. Gluten is poison to your body, and doing the diet challenge is a valid dx tool. That's how I was dx'd 9 years ago and have no desire to do any of the "official" tests. But I am interested in the gene testing just to see what's there.

Listen to your body - that's the best advice of all, I think. It's your health, and you will know the best how to optimize it by listening to your body.

Good luck, keep us posted, and remember, no question is too silly to ask!

Annete

When I was first diagnosed, I was in North Pole, AK at a McDonalds and I ordered a burger, no bun. The guy behind the counter looked at me then looked at his key pad then looked at me again and then looked at his keypad and then looked at me and said, "There's no button for that." And so I told him he could just turn around and tell the prep cook behind him and he said "There's no button for that." And I said "Ok, nevermind."

Loved it!! (My dd is an exMc emp)

And I'm not surprised by your KFC. Some people are so so SO IGNORANT! Or as we say here - ignernt.

How long were you sick? You have just started the learning curve with celiac. It's a very individual disease, affecting us generally in the same way, but each of us have our degrees of sensitivities and related problems. I would insist on a gluten-free cake - - or compromise with your own special cake; I'd be worried about cross-contamination and getting sick after one of the most important days of your life. And you sure don't want to be sick on your honeymoon!!!! When is the big day? How much time do you have to get used to the gluten-free diet? How sick were you before dx? And for how long? There are many great substitutes out there and things are getting better all the time. After awhile your body will "forget" what regular wheat based products tasted like. You will begin to associate wheat with poison and it will be easier to do without. Bette Hagman has some great cookbooks out there. I LOVE her pizza dough recipe. It will get easier, I promise. Just read through the posts that interest you and be sure to click on any links provided. Lots of knowledgable, experienced people here that will be more than willing to help, give you understanding, and a place to vent where you will get lots of sympathy!

Take care, keep us posted! And no questions are too silly or embarrassing. We talk about EVERYTHING!!!

Annette

Just got my blood test back today

tTG 6 units

Gliadin IgG 42 units (moderately positive)

Gliadin IgA 6 units

Doc says that IgG isn't a good indicator, but instead the tTG is the best. His conclusion is that I"m fine (don't have celiacs). But I don't feel fine. What should I do now?

Second opinion?

Endoscopy?

Gluten free diet?

Many thanks, I'm completely new here.

My current gp thinks that the tests aren't sensitive or reliable enough to put complete faith in them. There are way too many false negatives. Too many variables go into play.. How long were you sick? How much gluten is in your diet to begin with? Were you trying to be gluten-free before the tests? The fact that one part did come up pos would make one wonder. False negatives abount, false positives don't. I am one of the very small camp dx'd by diet challenge alone. Went to my gp with bad D for six weeks. He put me on the diet, two weeks later, no D, ergo, celiac. I talked to my current dr about my celiac, since I never had any tests to see if I had celiac, gluten sensitivity or intolerance or anything besides the diet challenge. He doesn't think I need any tests. I know how my body reacts on and off of gluten and so the dx is fine for him. Pauliina is right, you don't need a dr's permission to do the diet challenge. It's your body; the gluten-free diet isn't harmful like many other diets people go on w/o dr's supervision. If you feel better, that should give you

a good indication. The only test I may do later when I have money is the gene testing, just to get an idea of what I have and what I may have passed on to my daughter.

Keep us posted and good luck!

Annette

Hello. I just joined this forum and wanted to ask some questions. For most of my life I have had problems with fatigue, joint pain,anxiety,insomia and some stomach problems. I have had a lots of tests done through doctors and through ordering through direct companies.

Sounds like Celiac could be the culprit. There are lots of false negatives for celiac tests, Blood or Endo. My gp thinks that probably the tests themselves are faulty- not sensitive or specific enough for realiable accuracy. Remember, the medical community doesn't know everything, and celiac is one of the least understood diseases. You should read the posts by Radman - he's an oncologist and celiac was discussed but briefly in his classes. And I tried to explain my gluten-free diet to an internist I was seeing at one time and she thought it would be okay for me to eat bread! Anyhow, I was dx'd through the diet challenge alone 9 years ago. That was good enough for my then gp (he's since retired) and no other drs have dismissed his dx. I know what gluten does to my body and that's what I go by. You can try the gluten-free diet without a dr's permission or guidelines. If you feel better, great! It doesn't matter if it's celiac, gluten intolerance or sensitivity - the treatment is the same - the gluten-free diet. If you want, you could get a gene test, but then again, there may be more genes connected to celiac and gluten problems than what is currently known. It's your body, you're the one who controls how good it feels or not. Good luck, and keep us posted! We love to help!

Annette

I am a high school choral teacher and a pianist and although I don't find I have any memory troubles, by the end of the day I'm extremely tired since going gluten-free. I'm considering teaching English next year instead because of it. There are just so many evening committments and having concerts and competition after a long days work is killing me since going gluten-free. Not to mention the fact that I can't just stop anywhere and eat with the kids.

I teach at a high school with 320 kids in choir, too! There are two of us directors.

Still, it would seem a shame to waste my master's in music by teaching English, but I'm kind of at a loss with the whole energy thing.

I understand your passion. I'm an ex-band mom and I remember the band teachers always on the go. Couldn't you teach english and be an unpaid consultant to the band and choir? Or tutor? or give private lessons? That way you're protecting your health and using your degree. Just a thought. I feel better when I eat a high protein diet with lots of veggies. I had traveled with the band to competitions before and the stops are always fast food joints. I agree with you, traveling under those circumstances is not good for those with celiac. Good luck with everything!

Annette

Does anyone know if Grand Marnier is gluten-free? Or does anyone just order a margarita & assume it is gluten-free or do you have to always ask the ingredients of a margarita? Not that I will ever find a babysitter to go have one just dreaming here but if I do I want to be prepared.

Believe me margaritas are okay!!!!! Unless you're allergic to corn products. But Grand marnier and tequila are gluten-free!!! Not everything has been taken away from us!

I saw on tv that kingsford uses wheat in there charcoal as a binder. I did some googling and founout that most do. So do you guys cook on an out door grill. have you gotten sick. I wander if the lava rocks are made with wheat ?

YOU ARE KIDDING!!!! OMG!

It's the cross-contamination that's the problem. I know you wouldn't ingest the cologne but in applying it, or later if your hand touches the area and then you eat something with you touch w/o thoroughly washing your hands, you could ingest the pesky little protein. You can't absorb gluten through your skin. But some with wheat allergies do have problems with skin contact. It's rather individual.

Annette

I agree with raven. I was dx'd by diet challenge alone. Hey, it's your body and if it functions better on a gluten-free diet, then great. So what if you get looks from family and others. It's not their body and they don't have to live with the pain that you're going through. I just got over a bout of trapped gas and boy, can I relate. My major symptom used to be D, but now it's constipation that I have to address with diet and OTC daily.

Keep us posted!

Annette

When cross contaminated I used to have severe D within 20 to 24 hours (I was never a "fast reacter") but now it's constipation that lasts for two to three weeks but everything else stayed the same:

Chronic, dibilitating fatigue

brain fog

general flu-like achiness

depression

Some posters have had immediate relief, others a slow lessening of symptoms. As an autoimmune disorder, it seems that celiac has a very high number of variables for each person with the disease. The fact that you found relief right away from the gluten-free diet as opposed to the ibs safe diet sure does make one suspicious of celiac disease for you. Remember though, if the dr orders any tests - full celiac bloodwork panel or the endoscopy, you must have been consuming gluten for a long time to have any hope of a positive result. Or you can just go on your merry gluten-free way---the diet challenge is a valid diagnostic tool, too. That's how I was dx'd oh, so many years ago. No testing for me, but I am curious about the genetic tests.

Annette

Radman:

My biopsy indicated that my villi were totally flattened. Celiac issue. It also indicated that I have a large hiatal hernia, which often share the same symptoms as Celiac, except for the volcanic flow through the butt.

I got lost in my statement. I do believe that we vary grately in symptoms/ duration. I guess, to date, I am one of the lucky ones.

And in the Mid-South-East, I am sneezing my butt off.

Lisa

Too early in the morning as I read this...my mind came up with an interesting mental pic....More Caffeine, please

Had to go to a seminar where lunch was served, banquet style. In other words, the choices were chicken alfredo on penne. period. I was a substitute at the last minute so I didn't have time to explain before I got there what I could have. I asked if I could just have a piece of chicken with steamed veggies. A server brought me a plate of the regular choice and told me no gluten was added to it. It didn't have to be added...

And my other plate turned out to be a beef stew with gravy all over everything with, of course, flour thickener. I was sicker than I'd been in a long time.