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I don't know about Medicaid, but my insurance company wouldn't reimburse it. It's not a mainstream medical thing so I'd guess you'd have some trouble. Why not just try the diet? If you're someone who can stick with the diet without an "official" diagnosis, dietary response is an easy, cheap way to go.

Thanks everyone! I don't think it's Ehlers Danlos, none of the other symptoms seem to match.

I have taken a weight training class so I've got the basics like don't just work the biceps, work the triceps, too, but seeing a PT would probably be a good idea. I talked to someone who goes to my gymnastics open gym who used to be a PT and she was giving me some advice on what to do for my hip tendons that are loose and snap over the bone so some good exercises aimed at specific joints is a great idea.

I just looked up the Q-RiBb Lyme test and it looks like this one will eventually become the "gold standard" of Lyme testing since it tests for the bacteria rather than the antibodies to it. From what I've read the blood test can have false negatives. Although I've had several blood tests over the past few years and these symptoms are a more recent thing since I started to become super active again. I've also had several injuries that I feel are related to the extreme flexibility so I don't know, it could be Lyme, but I don't feel all that strongly that's what it is.

I've been having joint pain lately that seems to affect most of my joints. One day it will be the knee, the next the elbows, etc. I went to a rheumatologist who diagnosed hypermobile joint syndrome. Which is just a fancy way of saying I'm flexible. He's very right - my joints are loose and I do tend to get injured easily because of it. His suggestions: lift weights and maintain a healthy body weight, both of which I am already doing. When I told him that his next suggestion was to get a second opinion... But honestly, I was impressed that he even came up with a syndrome for me.

So, I feel like this is one of those diagnoses like IBS or FMS that is describing the symptom not the cause. Any ideas on cause or what I can do? I was thinking about eliminating nightshades for a bit, but that's my only idea.

Rundown of the bloodwork: Lyme, rhumetoid arthritus, muscle enzymes, thyroid all fine. The only strange thing was my blood calcium level was 10.2 (normal is less than 10.1). Doc didn't seem too worried about this (although I don't really trust him 100%). I know this could be a sign of hyperparathyroidism, anyone know how to know for sure? I will definitely be getting this test redone in a few months to recheck, but my symptoms do seem to match that of hyperparathyroidism.

The shredded wheat might be enough to make you sick, but it's very possible it's not enough to show up on a blood test. I think the guideline is 3-5 slices of wheat bread for several months prior to the blood test to get a positive if you have celiac. Gluten-light could be enough to not give you a positive. Try the diet and see how you feel. If you feel better after a few months, you have your answer.

I also have a solo kitchen and love it! I find the little things that stress other people out like insensitive coworkers or lunches out bother me a lot less because of it because of it because I only have to deal with that stuff occasionally, not everyday at home. I threw away the really beat up tupperware (like the stuff I used to try to pop loose popcorn in when I was in college and was all melted and burned...). I would have gotten rid of wooden stuff if I had any, too. All the rest of my tupperware, glassware, etc stayed.

I'm guessing the salad bowl has a finish on it that makes it easy to clean. Wooden cutting boards usually have a finish, too, but it gets cut into a chipped off which I wouldn't think would happen with a salad bowl. If you can give it a good scrub I think you're fine. I think you should be able to wash the rubber well enough, too. The best part about a solo kitchen is that after you do your initial clean and scrub, you never have to think about contamination again!

that's exactally what I will do and when I have this meeting with the head cook (who I'm sure doesn't actually cook the food she just orders and plans it for all the hundreds of sites in the area) I will say how can you guarentee me that his food will be cooked separately and in it's own brand new containers that haven't been previously used for other food that has gluten. Like I will say are they gonna buy new pots,pans and cooking tools because that is what my family did to avoid cross contaimination (I'd be really suprised if they'd agree to buying new stuff). If for some odd reason they did agree to buy new thing I would ask them ok how can you guarentee it will only be used for food for my child who can not have gluten or dairy.

Anyone have any good cross contaimination articles please fwd them to me.

thanks.

Janel

I'd print off a list of celiac-related diseases, here's a link to a list: https://www.celiac.com/st_main.html?p_catid...-55107413872.96

You can emphasize that some of these are short-term (e.g. behavioral issues, does the school really want to deal with a kid who might get ADD symptoms when glutened) and long-term.

Or how about Gluten Causes Brain Disease: https://www.celiac.com/st_prod.html?p_prodi...-25107507472.a8

How about the list of things to watch out for: https://www.celiac.com/st_prod.html?p_prodi...-29107507472.e5

Or the can't have list:

https://www.celiac.com/st_prod.html?p_prodi...-29107507472.e5

I'd be overwhelmed already if you came in with all this info.

I don't have anything about CC so I tried to find a definiton of how much gluten would be harmful.

I found this article: https://www.celiac.com/st_prod.html?p_prodi...-28107424272.61

At the end it sortof states how many ppm of gluten can be harmful. It also illustrates that gluten can show up in the weirdest places that I would never expect a school to know about.

Another article about the FDAs proposed gluten-free labeling being at less than 10ppm:

Open Original Shared Link

I'd say that's pretty hard to guarantee, especially if they are cooking with wheat flour.

You might also want to ask if all the cooks will be using gluten-free personal care products. Yes, they are supposed to be washing their hands and wearing hair nets, but can you honestly say that no cook is ever going to scratch an itch on their nose or brush their forehead?

Oh gosh, I would absolutely outlaw wheat flour in your kitchen! That stuff flies all over and is impossible to clean up. I find gluten-free flour all over my kitchen for days after cooking. Maybe you could use the cooking classroom at a local school for days when you need to demo wheat-based foods.

I've never tried Chinese since going gluten-free, for some reason it makes me nervous. Have you called the restaurant and talked to the manager? You'll probably get a really good sense of how well they'll be able to accomodate you and if you feel at all not sure, go ahead and bring your own food. I do it all the time. Some days it's just too much effort to deal with waiters and managers and I prefer to eat my own.

Interesting about the coke. I always thought coke was gluten-free, so I'm looking forward to seeing the answer!

You could also also try the recipes in The Gluten Free Gourmet cookbook. I've had decent sucess with their bread recipes, especially their french bread (works great for fondue!). Bread is really tricky. I've moved more towards corn tortillas instead of bread, like PB&J wraps. BTW - if you want to make cake or cookies, that cookbook is great: everything I've made from there has ben great.

I always ask my dentist to use the flavourless tooth polishing stuff. It's made from plain ground up pumice and should be something most dentists have on hand. You never know what the flavoured stuff is made from! I also like the taste of the plain - I never liked the flavoured so this works to my advantage.

I've read a lot of posts about Amy's being contaminated. I'm not willing to risk it!

Welcome!

From my experience at Girl Scout camp - the girls all help cook lunch which would be a contamination nightmare. You're probably going to be best off sending food. If you want campfire food - try baked potatoes or casserole wrapped in foil and cooked in the fire just like everyone else's food. When I used to go to camp we'd vote on Monday what we wanted to eat for the rest of the week. The leader might be able to send that info home with you daughter so you can provide similar food. Most of it's pretty basic: mac & cheese, hotdogs, etc so it should be too hard to send that stuff.

Cocoa Pebbles recently had gluten added back in - sorry But mint oreo blizzards - I'll bet you can make a modified version at home with mint ice cream and Kinnikinnick K-toos (imitation Oreos).

Does the teacher know that her serving all gluten food is upsetting to you? Unless you've told her that you'd like your son to be accomadated she may not realize, especially if you always send food. It's not too hard to include something gluten-free, but she might need some help in realizing that you'd like her to do that and maybe some tips on what gluten-free foods to substitute. We've all gotten really good at thinking outside the box for what "normal" foods are gluten-free, but I can imagine the prospects of organizing a semi-gluten-free kindergarten party for someone who doesn't do gluten-free on a daily basis coud be overwhelming.

That food looks delicous! I'm not a kid and can handle the disappointment of boring-looking food, but I might have to start spicing up my lunches that way.

When I was a kid, my mother always made me take my food in a lunchbox. It was certainly more environmentally friendly than a brown bag, but I was always embarrassed because all my friends had brown bags. In high school I started using the brown bag, but I'd reuse it until it started ripping.

Gosh, that sounds like a tough situation. Can you put together a ton of information about cross-contamination (and how it's nearly impossible for the school to feed him safely everyday), how celiac is serious even if he "just" gets a rash, etc, and bombard them with that? It sounds like you somehow have to convince them that there's no way they can get it right and you don't expect them to. It's taken you a long time to figure out the diet and I certainly won't want someone else going through that initial trial-and-error period on my kid.

I would think the teacher would really appreciate the up-front information about your daughter and what she can do to keep her safe. I don't exactly know how 504s work, but you may be able to discuss it with her teacher for next year now and get a feel for how well the teacher will handle it. Most teachers will probably be fine, but there are some who won't deal as well as others and if you sense your daughter has one of those teachers, you can probably still switch now.

I went to a party this past weekend and met a fellow celiac sufferer. He told me a couple things his doctor told him. I have read 3 books on the subject, and when I meet other Celiac, I get different information than I've ever read anywhere.

He told me he got the tip from his doctor that if he was ever glutened, or wanted to cheat that all he needed to do was take a double dose of pepto bismol and it would coat his stomach. I'd never read that anywhere before. He also mentioned that he'd read that red wine is sometimes "thickened" with some types of flour or grains. I haven't ever read that anywhere. Can anyone point me in the direction to find this information out?

I heard from another friend that self-basting turkeys often have gluten in them, and every brand I looked up online on the sites for the turkeys, none of them had any type of gluten listed in their ingredients.

I am wondering if some information that is being passed around is older information. the book my doctor gave me, he said it has old information in it, but over-all, it is good and pointed out i should read more than one source of information to keep myself up to date.

I came to the conclusion that is what this website is the best thing for... help us sort through all the different types of information we have access to and to let each other know what works. Maybe each of our experiences is going to be different, but to have some beginning guideline to start from will help me for sure.

Ummm, yeah, I'm pretty skeptical about this. I know there are some docs who say go ahead and cheat if you don't feel too sick, but you're still going to be doing damage. And the pepto coating the stomach - it's the intestines that get worn away and I would guess that the pepto wouldn't make it any further than the stomach so your intestines would be unprotected.

I have heard somewhere that some red wines may have thickener in them. Can't remember the details but I do remember making the conclusion that it wasn't something to worry about. Hopefully someone else will remember the details.

If a turkey contains a gravy packet it's 99% certain the gravy contains gluten (but you can still eat the bird). Some turkeys and chicken are plumped up with turkey/chicken broth, too, so if you see that as an ingredient it's probably a no-no. I don't know anything about self-basting turkey. Does it bast itself with gravy? Or water?

Older info may be incorrect if it contains brand names because formulas change all the time, but the basic info should be the same. I can't think of any major gluten pitfalls that are different today compared to 10 years ago. As long as you keep reading labels, you'll be fine.

Someone posted something about being sure your shampoo doesn't contain gluten/gliadin.

I'm curious though about that. I haven't been diagnosed with Celiac Disease, but I am 99% sure I am gluten-intolerant as I get horrific GERD (acid reflux) if I eat anything containing gluten, so I've been on a gluten-free/casein-free diet since December 2006.

Is it really necessary to check the shampoo? How can that affect me? Can it absorb through the hair or skin? Perhaps the residue left over in the hair can somehow get into the food later on?

Sorry for the dumb question. (I thought checking my medications was paranoia until I learned that it only takes 100mg of gluten to cause a reaction. I'm so sensitive and just one bowl of oatmeal will give me severe GERD for 2 days, so I try to avoid gluten/CC as much as possible. I only eat from the produce department now. Potatoes, broccoli, rice, extra virgin olive oil and sometimes beef.)

I'd use gluten-free shampoo. Most celiacs don't have a skin reaction to gluten (although there are definitely some who do, especially those with DH). The bigger issue is you wash your hair, you touch your hair, you touch your food. I'm always pushing my hair back from my face or pulling it into a ponytail or wrapping it around my fingers... Life is risky enough for us celiacs - this is a risk that's easy to eliminate!

I'm not really sure I followed this post. You put meat on the 'eat' and 'do not eat' lists. Also, chicken is typically easily tolerated by most any stomach. Lots of water and limited exercise are very important to recovery, it's important to improve your circulation as opposed to letting it stagnate.

I think this means to find the foods that don't sit well for you - for some that may include meat. Beef never sits well for me, but I still recommend a newly diagnosed celiac eat plain meat because it's easy.

I usually bring my own food when I go out to eat. I'm there for the company and social stuff, not for the food so I could care less what I'm eating. This way I don't have to stress out about the food and I get to hang out with people.

It can take a while. I'd been diagnosed and reading this board for nearly a year before it occurred to me that I should check the ingredients on my shampoo. Most of my things were packed when I was diagnosed so a year later when I moved and unpacked it never dawned on me that I need to check all my personal care products that were in storage. I'm still learning little things everyday.

I have rarely had a problem with drinks at bars. The one thing that I can see as being a major issue is that some bars pour the shot into a shot glass to measure and then into the glass, but they're using the same shot glass for every kind of booze... Most place free pour the alcohol, I think it's just newer bartenders that tend to measure.

The other issue that's been bugging me lately is the slice of lime. They reach into the limes with bare hands and I worry that beer has been splashed in or that there is beer residue on the bartenders hands. Haven't come to a conclusion about what to do about that one yet.

I find it helps to carry a card listing all the things I CAN'T have. And some of the things I can that people think I might not be able to (like corn, rice, etc). This helps eliminate the communication issues from the waiter (who likely won't even know what gluten is) to the chef. For salads I also ask about all the things I CAN'T eat even if the menu doesn't say it has it. I tend to get burned by the roll - I can't tell you how many times they've brought out my nice, crouton-free salad with a big wheat roll because I forgot to mention it mainly because I don't even think of the possibility of someone putting a roll on a salad. If I have to send it back I emphasize that they CANNOT just take the roll off; I need an entirely new salad. And I try to remember something about how the food was arranged (i.e. there were two tomato slices on top of each other) so I know for sure if it's a new salad they bring out.

You may also want to try going out to eat at non-peak times when the staff can devote more time to you. I try to call and talk to the manager at a non-peak time, too, to answer all my questions about what has gluten and what doesn't.

Good luck and sorry you're sick today.

Welcome! There is a HUGE learning curve with this diet that can be very stressful. I suggest starting with just eating a few things (like maybe plain chicken and veggies) and everyday research one or two new foods to find out what brands are gluten-free. Once you figure out the brands, you'll find that you can eat nearly everything you used to and shopping and eating is no big deal.