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Virgie

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  1. Thank you so much for posting this. :rolleyes: I had tried to ask a similiar question on a different board but didn't word it right because I didn't quite get the response I was looking for. But at the present time my 13 year old celiac daughter is tired of alot of the gluten free foods and so wishes that she could just once have a regular pizza or McDonalds chicken strips, etc. She wouldn't cheat and she knows that she has to be gluten free and has done really well with the gluten free diet but like you said I think we are just in a rut. And it is true that now that the kids are home from school there is more cooking involved and I am at times at a loss as to what to make.

    Thanks again for asking this question. I think we all sometimes have this problem. Even before gluten free I would have trouble of what to make tonight that everyone likes and is easy and fast, etc. etc.

    Virgie

    son 18 UC,EE, IBS, Asthma

    daughter 13 Celiac Disease dx 9/07 & UC dx 1/08


  2. Hi! Not trying to scare anyone here but my 13 year old daughter was dx in 9/07 with Celiac and did not seem to be responding to the diet. We were very strict & watched cross contamination & even changed the cat's food but she still had symptoms. Last month we visited a dietian at Mayo and had blood draws & stool testing done & was recommended to go dairy free for awhile to see if that helped. It still did not help as she still had lots of diarreha. So back to Mayo on Monday the 28th for endoscopy & colonoscopy. Well good news bad news. Endo showed real improvement so the diet is working, bad news is that she has Ulcerative Colitis. Her older brother has this too so maybe no big suprise there.

    So I guess moral of this story is that sometimes it could be something else and not it is because of Celiac & that they have been accidentally glutened. Even her GI thought that maybe she had refractory celiac and wasn't thinking about UC. So it did kind of surprise him too.

    I guess you never know sometimes but if you as a parent feel that something still is not right keep searching!!!

    Take care all!!

    Virgie

    son 18 UC, EE, IBS, Asthma daughter 13 Celiac & UC


  3. Thanks for posting this. It is true that everyone can look differently but after looking at this drawing I now realize that my daughter did have that type of belly before dx. And I just thought it was baby fat and that she would stretch out during puberty and lose the belly then. Never gave it a thought that was how someone with Celiac could look.

    Thanks again.

    Virgie

    son 18 UC,EE, IBS daughter 13 dx Celiac 9/07

    drawing: www.pigur.co.il/imgceliac/celiac.jpg this one works, sorry about the other one! (Cut and paste in your browser.)

    related discussion with link to same drawing (link actually works in this one): www.glutenfreeforum.com/index.phpshowtopic=18505


  4. Hi! I am still trying to figure out why daugher is feeling bad. She has been totally gluten free since September 07 and now dairy free since mid December. I changed everything in the kitchen so got all new utensils, toasters, strainers, etc. We've looked at lotion, shampoos, etc. So now comes my truly paranoid question - If the rest of the family is eating gluten and we forget and touch her - like hold her hand after eating a sandwich or kiss her on the cheek. Or if my husband drinks beer and hugs her is there any chance at all that she could get glutened from something like this. Or am I going wacky with paranoia here :( !!

    Oh & yes I took everyones advice & I have also changed the cats food to gluten free too.

    So any thoughts for this wacked out Mom??

    Virgie

    son 18 UCD,EE, IBS daugher 13 dx Celiac 9/07 Ttg 53.1 still


  5. Thanks everyone for all the advise. I am now looking into the various brands. The nearest vet has some called Feline ZD which costs $18.33 for a 4lb bag. Have also looked into California Natural & the Innova Evo brands. I will definitely look into the Friskies too as I do have coupons for that brand.

    Thanks again everyone. She is still get glutened from something so it could possibly be from the cat. Appreciate all the advice.

    Virgie

    I just switched to Friskies Signature Blend. It doesn't appear to have gluten in it. I'm sure it's not the best food out there, but it's better than what we were using & the price is still reasonable.

  6. Hi! Finally heard back about daughters blood & stool tests. Stool tests were negative. Ttg was still elevated at 53.1. So she must still be getting gluten. We are very strict with her diet, she doesn't eat any food outside the houses without asking first, she reads labels like crazy, have checked shampoos, chapstick, lotions, etc. So now what?? I did post a question about our cat the other day so I will switch to a gluten free cat food. Although she never feeds the cat but still could be getting CC from it maybe??

    She still is bleeding when going to the bathroom. Any ideas.

    Thanks.

    Virgie

    daughter 13 dx Celiac 9/2007

    son 18 UC,EE, IBS


  7. What do you feed your cat then?

    Thanks for any info.

    Virgie

    Yes, it is very likely that your daughter gets glutened by the cat. Cats lick themselves all over to wash, and if the cat eats food with gluten in it, there is gluten on the cat's fur.

    Why won't your husband buy gluten-free cat food? Cats can't tolerate gluten any more than we can. Cats aren't meant to eat any grain at all! Only meat and some vegetables. The only reason there is wheat in cat food is, because it is cheaper than meat. It is terrible for the cat's health.

    If you would buy gluten-free cat food, you'd likely add years to the cat's life span. And your daughter could pet the cat without worry.


  8. My husband thinks daughter could be getting glutened from the cat because the cat's food has wheat in it and then she pets the cat. Do you think this is so? He wants to get rid of the cat but the kids love the cat and it would be very hard on them. He doesn't want to buy gluten free cat food either. If the cat is making my daughter sick then yes I would want to get rid of it but not unless I know for sure. Cause we all love the cat so much.

    Virgie

    daughter 13 dx Celiac 9/07

    son 18 UC,EE, IBS


  9. Hi! We have a appt. at Mayo with a dietian on the 19th and will also be doing bloodwork. Just wondering what kind of questions that we should be asking the dietian. At the moment my daughter is not doing so good. 8-10 bloody stools a day. She has been gluten free since 9/07. She felt ok for about 3 weeks and then bam just started feeling bad. She hasn't been cheating and is a wonderful label reader. Also I replaced toasters, pans, spatulas, etc. so the kitchen should be good too. She packs a lunch for school so she doesn't get any gluten there either. So I am hoping the dietian can shed some light. We also have to submit some stool samples locally because they want to check for infections.

    Any help on what I should ask at the appt. would be appreciated.

    Thanks.

    Virgie

    daughter 13 Celiac dx 9/07 Gluten free since then.

    son 18 UC, EE, IBS, Asthma


  10. Hi! We have a appt. at Mayo with a dietian on the 19th and will also be doing bloodwork. Just wondering what kind of questions that we should be asking the dietian. At the moment my daughter is not doing so good. 8-10 bloody stools a day. She has been gluten free since 9/07. She felt ok for about 3 weeks and then bam just started feeling bad. She hasn't been cheating and is a wonderful label reader. Also I replaced toasters, pans, spatulas, etc. so the kitchen should be good too. She packs a lunch for school so she doesn't get any gluten there either. So I am hoping the dietian can shed some light. We also have to submit some stool samples locally because they want to check for infections.

    Any help on what I should ask at the appt. would be appreciated.

    Thanks.

    Virgie

    daughter 13 Celiac dx 9/07 Gluten free since then.

    son 18 UC, EE, IBS, Asthma


  11. "I feel like I was the drill sargent in the kitchen - "No, you can't use that. Get a clean one"; "You have to use an unopened stick of butter"; "You can't have that one, it's for the kids" :lol::lol: Then, when the buffet line was ready, I announced to the crowd of 20 that my kids were going first in case the rest of them screwed everything up! :lol:"

    That is exactly how I felt - like a drill sargent or something. I hope I don't feel like this at every holiday!! My husbands side was really pretty good. Now my Mother (I love her honestly) still thinks it can't be that bad if she eats a little bit or if she uses the same cutting board, etc. She also thinks that my daughter won't have to do this for life just for a couple of years. And I can't let the doctors talk me into everything. Sigh!! Time for more education Iguess.

    We'll see how Christmas goes next.

    virgie


  12. Hi again! Well we did make it through the holiday. I made my daugher a gluten free pumpkin pie that tasted fairly good. She ate it anyway. And my hubbys brother, sister-in-law & family were excellent always asking my daughter about what she could eat and asked if she wanted to cut up the celery, and prepare other foods if she was worried about cross contamination & such. So that day went pretty good. Sunday was another story. Went out to eat and she just didn't trust eating anything so she just drank some milk. And something still probably didn't sit right with her because she didn't feel good and had the worst smelling gas ever. We really hate eating out. It just seems so hard. She has an appt. at Mayo next month & I would also like to see if she could get in to see a dietian as I am not sure she is geting all the vitamins she needs and such. Always something.

    Next Monday I will have surgery on my hand. I have had carpal tunnel for 18 years and did have my right hand done 9 years ago but have been putting off the left hand. And I hope everything goes ok that morning because my son hates Monday mornings. Well mornings in general are awful for him. He usually has nausea, fatigue, & dizziness. So I hope next week he won't have that. He has been under alot of stress with school as he is taking both college & High School courses. And he missed about 20 days of school last quarter which didn't make it any easier. So I have been feeling a little stressed too and haven't been on as much lately. I have been thinking about you & your family and hoping that the diet change has helped your kiddo. Hopefully she doesn't find it as hard as my daughter does. Mine does really good with reading labels & that sort of thing. For her it is more emotional. She hates fast food commercials and yells at the TV. But she is campaigning to make people more aware of Celiac so I am proud of her for handling that so well. And she doesn't cheat which I am glad that she has no desire to cheat at all.

    Well, I have to see if my kids are feeling better and ready to go to school. Hate mornings. And it is the same on the weekends too so its not that the kids hate school or anything like that. In fact daughter got on the A Honor Roll. She is a smartie (doesn't get it from me).

    Take care & write when you can. I am anxious to know how everything is going with you.

    Virgie

    Hello Virgie,

    It's great to "see" you online again. I know that Thanksgiving has already passed, but for the upcoming holidays, you could maker her her own plate of food. I was going to bring a stuffed cornish game hen with a mini pumpkin pie for Thanksgiving (I ended up sick..so I didn't, but was a good idea). That way you wouldn't have to worry about CC.

    I hope this helps. I hope your son is feeling okay.

    Kassandra :)


  13. Hi! I am so anxious about my daughter and eating during the Thanksgiving holiday. This is her first holiday as gluten free. We have potluck one day & eat at a restaurant the next day (I hate eating out now). She is 13 and has been doing very well with shopping, reading labels, does not cheat, etc. So I am not worried that she will sneak off and have pie or anything like that. What I worry more about is cross contamination and what other people bring to the potluck. I also don't want her to feel like she can't eat anything. And she does feel that way when we eat out. Eating out is tough!! Hopefully it isn't where you live but where we live it is hard to even find a place that has even heard of gluten. We really feel the need to educate people around here.

    So am I the only crazy, over protective Mom here??!!!

    Happy Thanksgiving all!!! :)

    Virgie

    son 18 UC, EE, IBS, asthma & daughter 13 Celiac


  14. ARGH!! :angry: Sometimes I just hate going to the doctor. My 15 year old sons doctor one time gave him a 15 minute lecture about how he should have some drive and go to school. At the time my son was suffering from sleep problems due to Prednisone and he was taking a medication for his Ulcerative Colitis that was making him worse (he was having 15-20 episodes of diarreha a day). Oh yeah, doctor really easy to go to school when you are feeling like that. And that medication that was making him worse I had printed off information that said my son could be allergic to it and the doctor was like "no not possible". Yes it was possible because the minute he came off of it he got better. So I totally understand your frustration with your doctor. You could find some information and print it off to give to her so that she doesn't offer some other patient this wrong information. As for your pots and pans if they have scratches in them yes do replace them. Otherwise you do risk cross contamination with gluten being in those scratches. And especially your pasta strainer. Get a new one of those. And your wooden spoons too. Also don't forget about your toaster. I even bought another griddle so I could have one for my daughter and one for the rest of the family. And when it comes to the shampoo and soaps I would look into gluten free types. After all how many times do you touch your mouth after washing your hands. Better safe than sorry.

    Sorry that your co-workers taunted you with donuts. How mean :angry: ! What people don't get about gluten free is that it isn't just some fad diet to lose weight. You are gluten free because your health depends on it. Would these people taunt a diabetic with food that they shouldn't have?? By the way to help your donut issue I bought some Ener-G brand donut holes and they were pretty good. Also I bought this pan called a Pancake Puff. http://www.pancakepuff.com/?cid=390224 and they almost taste like a donut. My daughter loves them. I just use a gluten free pancake mix and then dust them with cinnamon sugar. Yum :) !

    I wish you success with the gluten free lifestyle.

    Virgie

    son 18 UC/EE, IBS, Asthma , daughter 13 Celiac Disease dx 9/07

    Ok. So I have been seeing this doctor for about 2 years now. Everytime I try to talk to her about something she responds with a blank look on her face...ok?... do you not know what I am talking about or are you just having problems hearing. It drove me crazy. So I had not been there in several months because I lost my health insurance and after recently getting it back, decided to get some bloodwork. I can never remember a time in my life when I have ever felt good, not one day. There has always been something that made me tired, or have an upset stomach, etc... I never really paid attention when I was younger and for the past 4 years I thought it was the combo of work/school. Well I graduated and guess what... I still feel bad all the time.

    Anyways, I do my own research and then all of a sudden, *light bulb, fireworks, bells & whistles*, I have Celiac Disease. I just knew it. When I went for my bloodwork I asked her if she knew of Celiac and she seemed to know a decent amount of info. So I went back for my follow-up and my bloodtest confirmed what I had thought. She starts telling me to go on a gluten-free diet and about how hard it is because she has to follow the diet too because she has a gluten allergy. Finally, I thought, something she can finally give some solid info on. She told me that I could eat Corn or Rice Chex, that I did not need to change my shampoo/make-up because that is only for people who break out in rashes, and buying new pots/pans is not that necessary. She said "You only need to change the things that you put into your mouth." I believed her too.

    Well I go grocery shopping yesterday which was a horrible experience to begin with. I go to check out and my bf says, you may want to double check the ingredients in the Corn chex. I start reading the ingredients and what do I see?.... "Barley Malt Extract"!!!! I almost flipped out. Why would my doctor tell me I can eat this??? Why?! I know that I can't have this and I have only done research on the web for about 5 days. Yes she can eat that because she has an allergy to wheat, not celiac. Why doesn't she know this?

    So does this mean she was wrong about the shampoo and pans also? I bet she was. I mean why do I have money taken out of my paycheck for someone to tell me false information? That money could go to buying better gluten-free foods, ya know?

    I'm sorry for ranting but this is my 3rd day on the diet. I am cranky, I had a really gross frozen dinner for lunch, and my coworkers were taunting me with krispy kremes. I have never wanted a donut more then I did today.

    So do I change my shampoo, make-up, etc? Are doctors visit worthwhile to me any more? Should I call up Dr. "I don't know the difference between an auto-immune disease and a freakin allergy" and have them transfer my info to someone else?

    Help please!


  15. Hi!! My daughter is 13 with Celiac and lives in Minnesota. But yeah she feels like she is the only one around here that has it too.

    Virgie

    I sure know what you mean. I don't know anyone with celiac. A girl i talk to says her aunt and aunt's friend has it but i don't know them. It is definately frusterating. I went to a ROCK funderaser thing and all i saw were little kids and elderly. There were absolutely no teens. I'm like come on i can't be the only teen in MN with Celiac!!!!

  16. Hi! My 18 year old son was dx 3 years ago with Ulcerative Colitis. So I am sure the GI will also want to do a colonoscopy. I know fun (not) It's kind of weird but my son can not eat Pretzels and soda together. But then there are lots of things that bother him when he eats.

    I hope you get the answers that you need.

    Virginia

    quote name='fulloftrouble' date='Nov 9 2007, 04:37 PM' post='362340']

    Blood test came back negative. I'm going to find a GI specialist and get them to start running tests.


  17. Hi! I suppose this is not really a new question but I keep going back on forth on this and was just wondering what you all thought. My 13 year old daughter just got dx with Celiac in September. And I am wondering if the rest of the family should get tested. My son did get tested 3 years ago but it was negative then. He has also had endoscopies that did not show celiac and has had allergy testing done so I feel that he probably does not need to be tested again. Now as for me I do not have any real diarreha or constipation issues although I do sometimes get diarreha after eating McDonald's fries (not sure why). I am also not losing weight (in fact I have gained weight in the last year). What I do have is an almost constant achy body, sore knees, sore feet, etc. I am only 47 but somedays feel like I am 67. I also get head aches. And often have cankersores in my mouth so bad that it is hard to eat., & I also have dental issues. So I am wondering if with any of these symptoms if celiac could be the reason? For my husband the only reason I worry about him is that he is losing weight. He is 5'9" and weighs 135. A little thin there I think but maybe I am just jealous that I'm not that thin. My sister-in-law tells me that he is so busy that is why he loses weight. Which is true that he works alot and I think does have a fast metabolism but he also eats a whole lot more than I do and drinks at least 2 beers a day (more on the weekend or at a party) and they have alot of calories in them too and yet he still loses weight.

    Do you think we should be tested? Should we do Entrolab? Would that be just as good as going to the doctor?

    Thanks for your input! :)

    Virginia


  18. Sharon, That is a good idea too. I really appreciate everyones ideas on how they take communion.

    Thanks. :D

    Virgie

    Hi Virgie,

    I am also Lutheran...For a while I just had the wine and passed on the wafers. I am one of two celiacs in our congregation. We take a bag of rice cakes to the altar guild ladies and each communion Sunday they put a small piece of rice cake in a small dish and when the pastor comes to me he takes the dish off the altar and I pick up the piece of rice cake. That way, the pastor does not handle both the regular wafers and my host. Hope this helps.

    Sharon


  19. That is a very clever idea! I just found out that someone in our sister church also uses gluten free wafers so we will be getting some from him. We always take the wine from the tray ourselves so that shouldn't be an issue as the pastor never touches it. But I do like your idea. Really good thinking.

    Thanks. :D

    Virginia

    www.cokesbury.com has gluten-free communion wafers (I'm Methodist). Our church bought them, but I keep them here at the house.We have communion every month, so I go a little early and snag two cups of juice (Welch's)from the stewards. We bought a little cut glass covered butter dish (I think at WalMart, actually) and I squished fimo in one end and made dents with two communion cups to hold the two we use each month. I put a few communion wafers next to that, and put the lid on. Our communion stewards put in on a little tray and with the rest of the elements it all goes on the altar.

    When it's my son/husbands turn, our pastor brings them the little glass box, and they open it themselves. Or, if we're taking communion in pews (hey, Methodists just can't have enough variety!) he'll bring it to us. He was happy to do it, and nobody has to worry about x-contamin. because nobody actually touches it but me, and the cover keeps it safe.

    My son was confirmed last year, and it went off without a hitch. Eventually I'd like to see the whole thing be the responsibility of the stewards, but I'm not quite ready to trust other people with all that bread around!

    joanna


  20. Hi! I'm fairly new to this board so forgive me if I ask questions that you have already told the answers to.

    My son has ulcerative colitis and he too feels very fatigued in the morning and has dizzy smells also. Has your daughter been scoped to check for that? My son too has missed many days of school. He is now a Senior but when he was a freshman & sophomore he missed around 80 days each year. And many days he did go in only for half days. And unfortunately this year is not all that great for attendance either. He failed a couple of his subjects but made them up last year. It was a very tough year with lots of homework but he got through it. He has an IEP so that does help. Does Susie have an IEP or a 504 plan? That would help her out alot if she did.

    Hope you get the answers you need and that she starts to feel better soon.

    Take care :) !

    Virginia

    son 18 UC/EE & IBS, daughter 13 Celiac

    Well, I finally got Susie to give her 'samples', and sent the package to Enterolab by FedEx today. She has been too sick for school at least twice a week for the longest time. If she goes to school at all, she is usually late, because she is so fatigued and dizzy in the mornings, that she is so slow getting ready, that even two hours are usually not enough.

    Today she was sick again with tonsillitis (which has become chronic). She failed all of her classes last semester, and is not doing well in this one, either. It is very frustrating. And she is one of the smartest kids I know.

    She refuses to try the gluten-free diet without 'proof' that she needs to be on it. She had a blood test done a year ago which came back negative (one number a high negative), which gives her the excuse to not even try the gluten-free diet, claiming she is fine. Obviously, she isn't fine at all.

    So, needing to know what is wrong with her, I hope that the tests will come back positive. Because then I'll know what to do to make her well again. She was such a healthy kid when little!

    The situation here at home has gone to where she needs to get away from her dad, as he drives her out of her mind (me too, but that's another story). So, she is going to move to live with her older sister's family for the new term in February. She lives a four and a half hour drive away with her husband and two little kids (Susie is holding the younger one in my avatar).

    Since they eat mostly Gluten-free Casein-free (and the older child strictly so), it would work well diet wise, too.

    Anyway, I'll post the test results when I get them.


  21. Thanks for th reply. We usually have little cups for the wine but thanks for mentioning about the shared cup. I probably would have forgotten about that. So much to think about when it comes to being gluten free and we are still learning.

    Thanks.

    Virginia

    Hi there! I've never been to a Lutheran church so i'm not sure exactly how they do communion, but in my church at home(baptist) we pass it around and everybody has their own, we don't share the cup or anything, so I just take my little cup of grape juice and skip the host.

    I know most churches don't do that...when I'm up at school i usually go to a catholic church, but i'm not allowed to recieve because i'm not catholic. I was told by one of my friends who helps serve that they were told to excuse anyone who skips by the host or wine because they most likely have some sort of allergy to it. I also know that some churches do have a gluten-free host that they wil serve if asked.

    Basiclly it is up to you and your church. Seeing as it is a church, i would hope it would be very accomodating and make sure that all would go smoothly. Talking to them is your best option, because really almost every church is different in their communion. also make sure you consider the wine as well, because depending on how sensative your daughter is, drinking from the same cup as all the others might effect her!


  22. Hi! It is a ways off yet for my daughter to have Communion but reading in the Living Gluten-Free magazine that I got in the mail today one person said they use a pyx to hold the gluten free (or low gluten) host during communion. I was wondering what you have done for your child for communion. We are Lutheran and she will be getting confirmed in May. I want to make things go as smooth as possible for her.

    Thanks. :)

    Virginia

    son 18 UC/EE & IBS daughter 13 Celiac


  23. Hi! In our experience I would say YES! My daughter is 13 and before her Celiac dx she had some accidents because it came so quickly and was so watery that she just couldn't make it to the bathroom in time. Very embarrassing for a girl that age. That was one reason I knew something had to be very wrong with her.

    Best to you.

    Virginia

    hi there all!

    Have any of you experienced a fully potty trained child begin having 'accidents'?? everyone thinks i am crazy to think it could be gluten related but...what do you all think? heres the story:

    DD will be 3 in Dec and we had a little trouble getting her potty trained but once she was trained (this past spring) she never had any accidents at all. then 6 months later she is having accidents. AND we have her back on G now because we are hoping for a definitive answer/dx in the hopes of finding out if her allergies include gluten or not. AND even weirder, i was thinking back to when we had trouble potty training. it was so frustrating because she would go on the potty and then have an accident 10 minutes later. you just never knew when she was going to go. i listened to everyone and chalked it up to her not being ready. so anyway...she was on G then. we hadnt gone gluten-free yet! and her elimination diet coincided (at least loosely) w becoming potty trained...i hadnt even made that connection b4. and now w her back on G for about 2 weeks she has had 3 pee accidents (2 during day and 1 at night) and 2 BM accidents in the last 5 days.

    so am i just blaming EVERYTHING on gluten (everyone thinks i am nuts) or what?

    Celena


  24. Hi! I hope you all can help me figure this out. My daughter (13 years old in 8th grade) at school gets stomach pains & has to go to the bathroom almost every day during 3rd hour. This would be about 10:30 in the morning. It happens whether she eats breakfast or not. So why that time of the day. She isn't having any problems in the Biology class (she's an A student and likes school) so it isn't that she is anxious or anything. She was dx with Celiac in September and has been gluten free since then. She does not cheat because she was accidentally glutened and does not like how that feels so she really is gluten free. She reads labels and thinks of things that sometimes I don't think about. So she really is careful.

    Anybody have any thoughts??

    Thanks :) .

    Virginia


  25. This is very true. My daughter got glutened at a restaurant because a onion ring accidently got put into her fries. Even though they use a dedicated fryer for the french fries and we told them about Celiac and not having gluten, etc. And she did quit eating the fries the minute she saw the onion ring but still it had touched other fries that she had eaten. So we too will have to be more careful.

    It does seem awfully inconvenient for us at the moment because we are still fairly new to the gluten-free lifestyle but we keep telling ourselves that after we learn more it will get easier.

    Take care & please be careful :) .

    Virgie

    Oh, please don't do this! Whether you noticed a reaction or not, you definitely put gluten into your system when you ate that chicken. Your food must not come in contact with gluten-containing foods. Ever. At all. Gluten cannot be removed from any food item. Once it's there, that food is not for you.

    It's mightily inconvenient, but very important.

    Hang in there!

    Beth