jmd3

I take several of the products every day and have been fine. This is their statement regarding gluten:

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Products containing gluten

The following information is based on ingredients that contain gluten. Although products not listed are likely to be gluten-free, we do not make that guarantee, because we do not test for the presence of gluten.

While a number of products on the market claim to be "gluten-free," there is no legal standard for such labeling, and testing for the presence of gluten is not required to make the gluten-free claim. Marketers of gluten-free products may base the claim on the presumption that, since ingredients in the product do not contain gluten, the product is gluten-free. However, consumers sensitive to gluten should be mindful that "gluten-free" products made in equipment and/or facilities that also make gluten-containing products can contain gluten through cross contamination. Therefore, individuals who are severely sensitive to gluten should confirm that so-called "gluten-free" products are substantiated by tests showing that gluten is not present in the product.

I would say these are take at your own risk. It would make sense that they would test their own products to claim gluten-free. Personally I would stay away from products/Shaklee that "claim" they are gluten-free, especially if they don't periodically test for gluten.

Other personal care products

Most do not contain gluten-containing ingredients. However, such products as lipsticks and cleansing bars contain ingredients from oats and/or wheat. If you are severely sensitive to topically applied products that contain gluten, please examine the ingredients listed on product packaging.

Again, same statement...lipsticks that may contain gluten, you are asking for trouble, as you may lick your lips, or eat something while wearing the lipstick that would affect you. I don't think lipsticks are just topical even though you clearly don't eat it.

Maybe I am just confused with the topic/question

I had a call on my answering machine from the Whatever show. They left there number to call and talk live on their show about the celiac sprue. I was not home so I missed my chance.

I am going to call to see if we can set something up so I would have another chance. I believe they were being genuine about the chance to speak about the disease - live on air. I am not by any means an expert, but I can tell them about my experience with the disease.

Just thought I would let everyone know that they sent an olive branch.

I haven't researched a whole lot yet about how bad gluten is for everyone, but I've heard it repeated here quite a bit. And having them gluten-free would sure make my life easier. However, dh isn't on board with it, so that would make it tough. And my eldest fought it pretty hard to. So, I have to pick my battles and weigh my options.

Check with your local library and see if they have a book by Mellissa Diane - " Against the Grain " I think you will find this a big eye opener! A very good read, and there is also some qestions to see if you are carb sensitive, wheat sensitive, etc...

I made my house gluten-free, and if anyone wants gluten they can go and get it. It is safer for me, and I am watching out for me. I tried the everyone else could eat gluten inthe house, but there was too much cc, so - no more gluten here. By the way, If I happen to be away from home for more than a day, visiting parents, my husband has a gluten fiesta for himself...But he is great, no pressure about no gluten, and that makes our home a happy home. He knows how sick I was, and he doesn't want to go through that ever again. He had to take a family leave to take care of me for 4 months, that was without pay or help from anyone, or anything - talk about tough, we are still playing catch-up!!!!

I am having an extremely hard time getting my girls tested for the celiac gene from their doctors. Their peditrician won't do it, my GI doc won't do it, and I suppose I will have to do enterolab on my own. ($369 each) Enterolab can detect gluten for up to 2 years, even if you are not currently consuming it, I believe that is what I read, and milk problems for up to a year. I took my youngest daughter off gluten, and almost all of the high fuctose corn syrup. We are not eating many processed foods right now - no can, no jar foods. Both doc's keep saying not at this time for testing, and don't punish them for my problems, and it is not fair that they eat this way for the rest of their life - blah, blah, blah... I have adapted a mostly paleo type diet, with a few ocassional treats. it is working for us, I have noticed a big change in one daughter's attitude without processed foods. She even notices a big difference....she had some kind of wheat product at someones house, and in the middle of the night I got a call that she was having an allergic reaction...she asked to come home, and on the way home she asked if she could get a new lunch bucket for school because she didn't want that to happen again. I itched like a crazy person for several years, and the doctors all told me they had no idea what it was. (Wheat) My little girl was on zyrtec for several years because of itching, and a rash, which I now think was DH... now there is no wheat, there is no need to take zyrtec - imagine that. But I quote the doc's again - "no need for testing at this time" Uggggh, this pulls my chain.

okay, stepping off the soap box

We used to travel on the auto train to and from Florida years ago - so much fun! I remember they used to serve alternate meals for those that needed it, but they had to let amtrack know in advance. I remember they did Kosher meals, they could ajust those a bit and be gluten free, but if you call them you could work out your meal preferences. Let us know how they did, I would like to take another trip someday on the autotrain, )

I am doing the happy dance for you! It is always so much better to know what is wrong, and luckily it is something that can be taken care of by removing gluten from her meals. Good luck with your new doctor, let us know how that works out for you.

HI,

I am hoping for anything you have got. I have figured out the things I cannot and can have....I think? How about a small amount of citrus fruits?

I am wondering if anyone has had their home tested and what test they used and where they got it from etc.

I also would like to know if anyone has tried using Nystatin before? Good results?

How long did it take to feel the results? I have a lot of fatigue and my nervous system seems out of wack (Sometimes anxiety like symptoms). My son has tourettes syndrome which I am on a mission to fix!!!!!!!!!!!!!!!! At least get rid of the tics from view...or at least a lot. I did this, but they came back and then we went to an allergist and got this diagnosis. He is amazing and trusts me with his diet. I can almost feed him anything, but he will be so excited to have something new. He is really enjoying fisth, we tried salmon the other day and he loved it. He is very sick of chicken, but if someone has a good recipe with a sauce of some sort that works, he may just be thrilled! Is shell fish a problem for anyone????

Thanks a lot,

Shelly and Tyler (Son)

My doc put me on Nystatin in April, I had to swish it for a minute in my mouth and swallow it...yuck, but it worked. Right after I was finished with it, I started the probiotics to get the good bacteria a head start. I have been doing better. Been taking them for about 4 months, I think they work.

My daughter is allergic to molds...and we had our house tested - very expensive, and a bit of a crock, but we know our house is okay. The only place we had any was a bit on the window seal of a few windows, but there is stuff out there to take care of it.

How old are your pillows? Sometimes if they are old, they can get not only dust mites, but molds inside them...You might want to get new ones, or even get the allergy pillow cases, nothing gets in and nothing gets out. It helped my little girl.

My other daughter is allergic/senisitive to shellfish. After she eats it she has always spent time clearing her throat for several hours, usually had to take benedryl ...needless to say she stopped eating it. She is to get an official test sometime in the next few months to see for sure so they can finally document her file..

*Have you ever made homemade salsa, or you can even buy it, most salsa are gluten free. I really like putting that over seafood, or chicken, and sometimes on eggs. Of course that is if you can eat tomatoes.

I went to the allergist today and he said he thinks I have a tree nut and soy allergy. I am gluten, dairy, peanut and egg free already. (Not completely egg free, but no omelette's, etc...okay in baking mixes though.) I don't know what to eat. Does anyone have any ideas? I need snack ideas and breakfast ideas...any help?? Thank you in advanced.

Kassandra

I feel for you, as I know what it can be like trying to figure things out. I am not only celiac, but I can't eat high fuctose corn syrup, (that is in most everything proccesed!!),yeast and I believe I will be adding corn to the list as well.

Your best bet would be to try and stay with plain meats, vegetables, and fruit, no processed foods. I have been doing that for just under a month now... It is worth a try, you may feel better. I know that it is making me feel tons better. I did have my first muffin today, I have not had one since January and I hope that I do okay.

I eat a pretty large breakfast if I can...protein, vegetable, and fruit...the same for lunch, and dinner....usually with a couple of snacks in between of fruit, or vegetables. Sometimes I have celery with almond butter, not sure if you can do that, but perhaps with some raisins, I do mix it up a bit, I had a wonderful salad tonight with garden tomatoes, romaine lettuce, a little bit of spinach, carrots, and added a half of avocado....small piece of grilled chicken with a little bit of ground pepper and sea salt, and I splurged and put a trace of balsamic vinegar on my salad too, I have been eating it plain, I forgot what salad tasted like without all the junk dressings. I made my own salsa yesterday and cooked up a bit of shrimp and put the salsa over it, it was wonderful. I can definitely eat this way everyday, no problem! Every other day I try and eat a couple of spoonfuls of organic brown rice. I am hopeing that I get better each day, and then I will try and add other things in.

I was addictied to breads, and bad carbs, and sugar...I can honestly say not anymore! I mentioned that I had a muffin, well I bought several, and froze them - before, I would have ate them all and not had anything to freeze.

Tomorrow I am going to try and freeze fruit so I can have some of this wonderful taste in the winter when there is snow on the ground!

I am not sure what to tell you, but I have been in your shoes thinking there isn't anything out there for me.....but really there is a bounty of foods to try. I know as celiacs/or with other food intolerances we are used to reading the labels, but when I started seriously to read them, they scared me.

Best of luck to you, I hope that you feel better soon.

Oh, sometimes if you are dairy intolerant you can do goats milk..I know it may sound strange, but most people can get away with it, something about it being from a small animal and not as many antibodies form, you can trick your system. You should be healing before you give it a try, or talk to your doctor first and see what they think.

Thanks to everyone that posted!!!!!

I was definately overwhelmed, thank heavens I did take a cooler, thanks again for your help.

Well, it was awesome, I didn't know where to start.

It took me a while because I have to have gluten free, milk light, and my daughter needs gluten free, soy free, and corn light - but we managed to find sooooo much.

juliem - I did get the morning glory muffins - we all had one in the car afterwards, they were fantastic! We kept going mmmm while we were eating them - My first muffin since January! My husband wanted the pizza shells, and we also got the carrot cake to cut into slices and freeze for a treat for Labor Day. My little girl picked out some of Pamela's cookies for her lunches at school. I wanted the biscuts, and the raisin bread, but thought maybe I would save them for next time. Forgot all about the rice tortilla's and I really wanted to try those - but I know there will be a next time!!!

So excited to get whole fresh pressed cranberry juice, the WF organic apple juice, and mineral water. My daughter loves Amy's light tomato bisque soup - we'll put it her thermos for school.

alamaz - my daughter found those salty potato chips, didn't even tell her about them in advance - she is a salt craving nut! I only let her eat chips once a week because she does better with her thyroid without them - The doc says it is fine to eat anytime, but I think she does better with a light diet of corn.

I got some great raw nuts, Tinkyada pastas, and rice crackers for snacks, BBQ sauce and KETCHUP without high fuctose corn syrup!

Now the best part of the foods that I got - oh my they had the COHO salmon, a bit expensive, but it was on sale!!! A great flank steak, I wanted the buffalo flank, but hubby was watchiing and I couldn't sneak it in, some kind of gluten-free sausage, I even got fresh cornish hens - I have never seen those fresh anywhere, ours are always frozen.

I even found goats milk in the refigerated section - Guilty, I did buy some.

I saw the gluten-free corn dogs....my daughter and I wanted those so bad, but thought those would not be good for either of us and we put them back, but who knows maybe next time we might treat ourselves.

Forgot all about the rice tortilla's and I really wanted to try those - but I know there will be a next time!!!

I did get organic fruits, but ran out of time (and money) to get some vegetables....but I can get those here.

Thanks again to everyone for your help!!

P.S. By the way - GREAT report from my surgeon - still cancer free!! - no more every 4 month visit - up'ed it to 6 months now ! He did tell me I will probably always still have pain because of the size of the tumor and the surrounding muscle/tissue removed, but all in all FANTASTIC news!

Does any one's children seem not do as well as other children without Celiac when they get overheated? My brotherin law has MS and has been told not to get overheated. Since my 10 year old has problms when she gets to hot I was wondering if it is the autoimune thing or the result of Having Celiac. Any thoughts would be most helpful.

Thanks

Yep, yep! My daughter that has hoshimoto's disease (thyroid - another autoimune disease) gets very red and overheated everytime she plays a sport, it has always scared me. She has earned the Presidental Fitness award, and is very atheletic so the gym teacher has always told me. She plays softball, and this always happens, at least for the last 4 years - this year we had cut most of her gluten, and did much better. For the last two weeks we have cut most processed foods, and she even seems to be doing even better. She trys out for the 7th grade basketball team starting next week, and I am extremely worried, but I have my hopes that being gluten free completly now it will be better...

I have a trip tomorrow to see my surgeon and found out there is a whole foods store there ( 2 hour drive to Dr) -I am very excited about going to the whole foods store that I maybe overwhelmed when I get there - I hear everyone speak so highly of this store and thought perhaps you could list your favorites so I know where to start! So please list your favorite items that whole foods carry.

Also, should I take a cooler?

thanks!

One of my guilty pleasures is watching Top Chef. I love all the drama and the foofy food they turn out. I think we could use this show to promote celiac awareness. Here is my idea. One of the challenges should be to create a delicious, allergen free meal. The chefs get a whole kitchen full of stuff to create a delicious meal, but they have to do it without using any of the top 8 allergens. To make it more challenging, some of the ingredients provided should contain hidden sources of the allergens (like soy sauce). The food could be tested for the presence of the allergens before it was judged. I think this would really help people understand about CC and label reading and things like that.

I don't know if they would ever do a show like this, but I think it would have universal appeal since allergies and intollerances are more in the news lately.

What do you all think?

Love that show, I usually do the all day shows to catch up on ones that I have missed.

You need to find there contact email and send that to them - how awesome that would be if they could do that - what a GREAT challenge. I agree that it would help sooooo many individuals understand CC, label reading, plus open up others to possibly understanding about allergies.

Anything to promote awareness and healthy living for us would fantastic.

The last celiac meeting that I went too there was a guest speaker (a doctor) that talked about peanut butter and being celiac.

The dr said that peanut butter was high in Omega 6 - (the bad one) and as celiac people we are already carrying around to much omega 6 in our cells. He suggested almond butter as a much better substitute. It is high in Omega 3's.

I have eated almond butter, it is expensive - the first jar was $8.50, now 2 months later is is $11.00 at the same store.

I have been putting it on celery, and never thought about it on apples until I read this, thanks for the tip! I don't use to much of it, but I did make an icing with it over a gluten-free cake for my hubby's birthday. It was a bit runny, but tastes oh so good on a chocolate cake!

I am reading the Paleo Diet book right now. It is pretty good book. My hubby, little girl and I are all eating that way. The only thing I have been adding a bit of brown rice every couple of days. If I go off at all it is to get some flax seed crackers - for the omega 3. I make them potatoes, but I am not eating them. It is going pretty good, my body can tell the difference. I would say I am definately at least 85% eating that way. I am not eating anything processed right now - except for the few flax seed crackers - We cut out ALL high fructose corn syrup - yeah!! My body can tell tell the difference, but it will take a long while.

I have my little girl practicing eating this way for school - She is still asking for junk foods, but she told me her body feels different. Her doctor is not happy with my keeping PIZZA and junk from her, can you believe it?? I am giving her the healthiest food possible, and I am denying her??? (Along with her hoshimoto's disease, I believe she has celiac too - but can't get any dr's to test her, because she looks good - WELL I DID TOO - I ate wheat for years, and years, and years, and then got sick) Anyway, we got her new lunch box today. We have talked about all the great food she will have to take in her bucket, the other kids would be jealous at school. I am making extra, extra food at dinner for the next day, or two - hubby takes it in his bucket, and we have it for lunch the next day.

Yes, I do agree about the bruises!! I was getting them so terribly bad. I must be starting to heal, although there are days that I question that... but I ran into a blanket chest last week with my thigh so hard that I thought I would have a complete black and blue leg....to my surprise I only had a few broken vessels...but no black and blue marks. I was totally shocked.

What I have been doing is chewing up a small amount of raw spinach very well before I swallow it. I have been doing this for 3 weeks now, and it is working! Spinach is one of the few ways you can get vitamin K.

This morning I put spinach in my scrambled eggs, I cooked a cup of spinach in the pan with tsp of canola oil then added the eggs to it. I like raw spinach better than cooked, but it is giving me some iron, and vitamin A that I need too.

By the way, most of my dark circles under my eyes are fading too - vitamin K helps with that also. (It is not because I am sleeping better - that is still the same.)

It probably depends on the brand of the envelope.

I know I was gluten once from this several months ago. Once I was standing is line at the post office with an open letter and I would not lick it, the postal man gave me some tape - better safe than ill!

I now buy the envelopes that are sticky already - you just pull the tab off and close. If you work in an office and you don't have the choice of buying them, I would be sure to use a glue stick or a wet towel or sponge like the others suggest.

Did they use a topical to numb the area before injection of the novacaine? This is often the culprit. You should double check on the glue though and also call your dentist today and tell him you have gotten glutened there. Many dentists are clueless and do not think there is a need to check products. They often assume they are all safe, they are not. It makes me so angry that in other countries dentists are often the first to notice problems because of the effects on the enamel and the first to refer children for testing. In the US they know nothing about it at all and just traumatize us further by yelling at us for not taking care of our teeth as they crumble out of our heads.

Yes, they used a topical to numbing gel too....I know the dentist scraped the extra dried glue away, and I did rinse, but I am sure I swallowed some of that also. I was so ill yesterday, had every symptom, and painful D, today the symptoms I have remaining are super gas in my belly, and abit of fatigue, dizziness, and extreme back pain. I will call tomorrow and tell them how seriously ill I got after being there.

I definately asked before I went to the dentist to check on what they were going to use to be sure there was no gluten in it...but I guess they did not take me seriously.

I explained to the dentist....of which I do like, and only been going to him for about 2 years.... that most dentists recognize the dental enamal effects caused by celiac sprue. He said he never heard of this disease before, but would keep his eyes open for the next patient. This should be something learned in dental school - it has to do with tooth enamal for heaven sakes!

Thanks for the advice.

Just wondering if anyone has any information about the cement that dentist's use in their practices? I had a cap cemented onto a post, inside a broken off tooth yesterday, and I am suffering severely today. I know that it was not food, only fruits, vegetables, and meat/fish yesterday...and the last 5 days, and everything was made at home by me in a gluten-free home.

I specifically asked them to find out before I went if it had gluten in it, but when I got there know one said anything.... 2 different cements were used, along with novocain, but I think the novocain was okay. I got the novocan at 3:00 - it did not wear off until after 6 at night.

Newly diagnosed people do not know all the symptoms....It was posed as a question....

I went through 14 doctors trying to find out what was wrong with me. When I was diagnosed I was first told by a doctor through the mail on a 3x2 piece of paper. I had absolutely no idea what it was. Then the following 2 doctors diagnosed me - one just told me to see a GI, then when I saw the GI and went through all the tests there, I was handed a piece of paper about the local celiac chapter's meetings, and one more sheet of paper as to things I should avoid. Wheat, rye, barley..etc.. I was in shock...

My shampoo before I was diagnosed had wheat gluten proteins in it, says it on the ingrediants. Many anti-aging products in the US have wheat gluten protiens. My current shampoo that I use now has rice proteins in it. I feel safer that way as I do get water on my lips when I shower, then it goes into my mouth..

By the way....some of my first symptoms was dizzy (vertigo), heart palpatations, then extreme thirst, then of course frequent urination, burning itchy skin, 6 or more canker sores inside my mouth, unrelenting brain fog....plus so much more!! I had a ton of things happening to me and not one doctor diagnosed me for such a long time -...then the more obvious symptoms happened with losing 32 pounds in an extremely short time. I believe that I got cancer and it grew so rapidly because my fighting cells were busy fighting my gluten filled cells.... instead of what they should have been fighting. Of course that is my belief and it fits with most of the books that I have read.

We as a community should be respectful to others feelings - we are a community and should not judge others, I am glad that when I posted one of my first questions that someone did not repost my questions and pose it to be wrong or indifferent for asking.

I am so sorry you are having a tough time of it - I don't eat out much, my family thinks I should, but I feel more comfortable eating what I make. It is much healthier.

It sounds like you need to get a handle on the yeast problem - what did your dr to for that? There is an oral rinse they can prescribe - then swallow it.

Also, it sounds as if you don;t have any good bacteria - you should think about a probiotic - it REALLY helps get your intestines back in order. The first few days on that might be very hard on you - there is usually a battle with the good and the bad bacteria, but it is SO worth it in the end. You should also be able to make your own B vitamins in your system after that. When your intestines are ill, they use up all the vitamin B that you have. I also think that the B vitamins that we would take in need to be absorbed in the upper intestines, that is where the villa is flattened so your body can't absorb them or replace what we need.

I DO NOT use any soaps or lotions that have gluten in them. I find that applying the lotion with my hands - then just eating something, or touching my mouth etc I get sick. (I also make sure I use lotion without mineral oil also, that is not good for anyone) My hair was falling out in handfuls, and when I switched to a gluten-free shampoo that stopped as well. There are many discussions about this on board, but you have to do what is best for you. Do watch what lipsticks, or gloss that you use, that can be a gluten source too.

You will get tons of great information here. But, have you read any books on the subject yet? In doing this it has helped me understand it so much more, See if your library has "Against the grain", Melissa Diane - That one is very interesting reading. There so many more good books as well; "Celiac Diease A Hidden Epidemic, "Dangerous Grains", just to mention a few.

I too am having a very long recovery from this. I had the Ataxia so bad, the celiac antibodies were attacking my brain cells, and I may have perminate damage, but it is still too early to tell.

Make sure all your medications are gluten free, that could be a hidden source too.

You may find out that you have another allergy or problem that is delaying your recovery too.

I hope that you feel better soon.

thanks for sharing the information, the pharmacist told me to take mine on an empty stomach...don't know why, I guess I should have asked. SO I take one early in the morning, then one right before bed.

I found a site that is an information site for probiotics. It might be useful information for someone.

Open Original Shared Link

thanks for sharing the information, the pharmacist told me to take mine on an empty stomach...don't know why, I guess I should have asked. SO I take one early in the morning, then one right before bed.

I found a site that is an information site for probiotics. It might be useful information for someone.

Open Original Shared Link

There is talk here everyday about probiotics - I found this site that may help give some information to probiotic usefulness. I found it interesting, and perhaps you will too.

Open Original Shared Link

Redbridge by Budwiser is pretty good - but expensive. There is another I heard is pretty good too, but even more expensive - Bairds Tale

What kind of probiotics are you taking?? They are all a bit different. I just ordered a new brand from my vitamin supply store - it is enteric coated and has 34 cfu's. I am currently taking one that needs to be refrigerated...but have to take one in the morning and one in the evening to be effective, but it is working.

Just wondering if there was MSG in the Hillshire Farms kielbasa? That effects me as though I ate gluten.

I know Cheetos has it in also.

I hope you feel better soon.