mindwiped

I'd at least call to ask what they wanted me to do. Tell them just what you posted, that you feel yourself running down and don't want to get back where you were, does the doc recommend the tests be moved up? I know I asked a specialist about doubling a medication that I'd had doubled, but had backed down to the 1/2 dose, and was needed doubled again. They weaseled around, and I finally said something along the line of, well the 30 mg isn't cutting it, and they've given me 60 before, why can't I have 60 now? At that point they realized the med list my PCP gave them was old and had me listed at the higher dose. Dose doubled, and I'm a happier camper. Ask, and you might just receive, ask not, and suffer in silence. Good Luck!

I actually miss dairy a LOT more than gluten... so I know it's not easy. At least you have an answer now

BTW... this morning I bought some groceries and I noticed that my co-op is now stocking "So Delicious" coconut milk (they also make coconut yogurt and ice cream). It's good!! You can drink it straight out of the carton. No dairy, gluten, soy, nuts, or corn

I've seen the 'So Delicious' coconut milk ice cream in my whole foods, and have been so tempted, but it's 3.99 a pint, and I can get a 1/2 gallon of the soy or rice dream cream for the same price, or even cheaper if I get the whole food's house brand. Has anyone tried it, and if so, is it worth the extra?

I am glad to have an answer to what had been going on for the last 6-8 weeks, and I'm glad it's something as small as a dietary change. And, unlike gluten, milk's clearly labeled, and easy to read, so that's easier at the grocery store. You'll all recognize me as the squinting woman with the cart full of fruits, veggies, meat, and vegan food--which is a weird combo, but vegan guarantees no milk or butter. I confused the Aunt Annie's pretzel people on Wed, they had no clue what vegan meant, it was almost funny, except it was sad.

OK, well I've challenged, and I have an answer, I'm off dairy. I finished up classes last night, and hit the chocolate milk, followed by Mexican food, covered in oozy gooey cheesy sauce. If I'm leaving the land of dairy forever, I'm going out with a bang...and bang my skull did, repeatedly all day today. I'm also all nasal drainage-y and my throat hurts, as well as bloated and gassy (I figure since most of ya'll are celaics, or family of, a little gas talk won't scare you) So thank you for the advice and support, I maybe back in here crying for help to find replacements for holes in some of the diet, but I think I've got a lot of the basics down, as we were never an extremely dairy heavy household anyways.

I'd bought DH Whole Food's house brand chocolate chip gluten-free cookies as I saw the posts, so I turned and asked how they were. In his exact words, 'They're decent', which for week old cookies, and from a grouchy morning bear, they're pretty good fresh, especially if you warm them up again.

Take a deep breath. Now another. It will get better! For now, I would concentrate on naturally gluten-free foods your whole family can eat. Will your family eat tacos? Crunchy shell tacos (Old El Paso is General Mills and won't hide gluten) are gluten-free. Ground beef is fine, and use the Old El Paso spice packet, it's fine too. Lettuce, Cheese (if you tolerate lactose), beans...are all fine. Watch the label on your sour cream for 'natural flavor' Daisy Brand is safe. Chili (General Mills spice packet) is gluten-free-no crackers unless they are gluten-free. Indian Food is safe for the most part- no naan. There was a lady with a gluten-free daughter who did a crock pot blog every day last year, it's been a wonderful resource, and she names brands, so as long as you just do a quick double check, there's a wealth of gluten-free recipes.Open Original Shared Link

Also, you will need to take some time to make your kitchen safe to cook gluten-free in. There are a number of other threads about which pots/pans/utensils you need to keep/wash/get rid of. You need your own toaster, PB, butter, and any other condiment that you stick a knife into (anything that squirts or sprays without touching the gluteny surface is safe)

I'm so glad you're feeling better!! (Kinnikinnki makes donuts, but give yourself another week or two before you try them, they're good, but they're not fresh yeast raised glazed death donuts)

It gets easier, and soon you won't think twice about it. My DH was diagnosed celiac 8 years ago, and I found out last week that I'm probably off dairy for good (I do my challenge tomorrow), bless the people on here, they're helping me with the dairy, as well as all the gluten-free stuff. Keep asking questions, that's how you learn, and I think many of us here learned from someone 'paying it forward' from someone else, it's just my turn now.

I've been really good, it's been an entire week, completely dairy free this morning. The way the papers read, they want you to try to go as dairy free (I read as dairy lite-won't work, but they don't think they'll talk people into truly no dairy) as possible, and then 7-10 days later dairy do a dairy challenge, since it won't do the villi damage that gluten will, but after being daily lite or in my case dairy free, you'll know right away if dairy's going to be an issue for you. Since I knew more from DH about 'gluten lite' and how that was a no-no, I went with the assumption that at least for the self diagnosis part of this, I need to be completely off dairy, so if anything said dairy anywhere on the label, it's been out of my diet. Post challenge, if I find that the small amount they use in Italian Dressing doesn't flare a migraine, I may cheat that much, but I'm finding that this really is helping me, and I bet that tomorrow evening when I have that pizza and ice cream (I'm going out with a bang!) I'll have a migraine on Saturday. Plus, some of my lifelong sinus trouble seems to be getting better, I'm nose breathing first thing in the morning, without medication, and I could clear my nose by just blowing it, no saline irrigation. (Sorry if that was TMI for some). I will definitely let you all know my outcome and please realize that I am still thankful for all your advice and recommendations

That is so cool that your neuro recommended you try this! My migraines improved significantly when DH went gluten-free/CF and I went along for the ride. I was way too spacey to attempt a mixed kitchen! Now my meds are down by 50% even though I am eating known "trigger" foods like dark chocolate. I've made sure my neuro knows about this diet.

My husband prefers that his coconut oil taste coco-nutty so I can tell you he does not like Spectrum brand. I'm not a huge coconut fan, but I like the vanilla coconut ice cream. It is costly, so I'm gearing up to make it at home. Even if I weren't dairy free, I would stick with this ice cream, because you don't have to worry about the hormones in the dairy and it is that good.

We also like cooking with ghee or clarified butter. I have bought an organic brand, Purity Farms, that is lactose and casein free.

I found headaches improvements from both gluten-free and CF. Some improvement was immediate and direct, some took awhile. I found that my menstrual cycles were much more manageable and I needed less thyroid med.

I heard that the alternative cheeses were so bad that you should wait a few months before trying them! So we didn't and now we know that he doesn't tolerate soy anyway....I think you can make a form of cheese from nut milk. I haven't looked into this yet. But I do want to say that home made nut milk is way better than store bought. I'm not positive it is cheaper unless you're in a buying club or co-op, but it tastes much better and the leftover nut pulp can be dried and makes a nice low carb, gluten-free flour.

Here's a no dairy web-site you may find handy/inspiring. I don't know of any forums. Open Original Shared Link

good luck with your trial!

I've gotta give my neurologist big thumbs up for trying to attempt dietary modifications along with the medications. I know many neuros will just drug you up and send you home, so her willingness to try this is wonderful. They've also mentioned caffeine free, but I've tried that in the past, and for me its not a trigger, so, if I'm giving up milk chocolate, and all the chocolate candy at the checkout stand, I'm not giving up chocolate completely, thank goodness for vegan baking chocolate chips!

I worried about the cheeses, in fact, the guy I mentioned at Whole Foods laughed at me, since I mentioned 'Do I need to walk away from cheese for a couple of months to forget what it tastes like and then try this, like we did with dh and gluten-free bread?' The Vegan Gourmet really is good! This is from someone who had cow's milk cheese last week, so it's really good. I don't know if I could eat it cheese and crackers, but I made that pizza, and all it's missing is the Parmesan, which I've read I should sub nutritional yeast. I really don't drink liquid milk, so while I appreciate all the advice on the milks, I'll probably end up just grabbing whichever is on sale or cheaper when I go in, which last week was rice milk. It bakes fine, and tastes fine in scones, so it's fine with me, and I hadn't done cereal with milk in ages, so I won't even miss it there.

Thank you all!! I'm really grateful!

My dd uses almond, rice or soy milk. She likes soy the best. I use any of them for cooking/baking. I cook with light olive oil. It works great in Chex Party Mix! I use soy sour cream in homemade tortillas or muffins. I found a really good gluten-free/df waffle recipe if you want it. We pop popcorn in lots of coconut oil so you don't need any butter...delicious! Mexican pizza or BBQ chicken pizza is fine w/o cheese.

You can crunch up gluten-free Fritos or tortilla chips to put on chili, tacos, mexican foods, pizza, just about anything...my dd is creative with chips and nuts. You can make enchiladas lots of ways w/o cheese.

I use Earth Balance for cookies. I make lasagna and layer it with veggies/mashed potatoes and no cheese. My dd loves baked potatoes, plain, no butter, or with chili and green onions.

I read you can use a more protein milk like soy for making boxed pudding but add some cornstarch to thicken it.

Thank you. The dairy free diet does seem to be helping the migraines, I've got 2 more trail days dairy free, and then I attempt to reintroduce it, but the reintroduction may wait for Friday evening, so that it won't interrupt school if the reintroduction flares a migraine and I'm dairy free for good. I've felt horrific for my Chemistry lab partner, I'm running on auto-pilot and she's been out of school since the 1970s and struggling. Now that I'm not constantly on the migraine meds, I'm a bit more help to her, and not just hurrying to get my half done to go home and try to sleep it off.

I do have more questions, I'm beginning to feel like I did at the beginning of dh's diagnosis Does the coconut oil taste like coconut? If so, is it nice fresh coconut, or the icky dried sweet yuck? Have any of you all tried the Purely Decadent Coconut Ice Cream? I'm on Thyroid meds and trying to watch the soy, and wondered about it tasting coconutty too. I did make pizza last night, dh is out of town for work, or I'd have used a Chebe crust (I keep one old gluteny pan away from all the others) and I used a mix of Vegan Gourmet mozzarella and Monterrey jack. I was really pleased with the pizza, but I will have to watch how often i have it as it is soy, but it was yummy, fyi for any of you all who are off dairy. Another board I'm on also recommended Dr. Cow vegan cheese. I did grab a tub of the Earth balance spread for toast and whatnot, and I'm really happy with it! It made great 'butter' chicken used 50/50 with canola oil in a recipe I have.

Thank you all who have taken the time to read all this and reply, I do know that this is something you pay forward, but I'm grateful for all of you paying it forward to me!

You really need to get some fruit in your diet since you're having trouble getting moving. Since you said you live in a house, not a dorm, do one big cooking session, once a week, and just re-heat leftovers rather than eat all that fast food, or you'll end up really sick, due to malnutrition. There's a crock pot blog, you could make a big family size portion of something, and then just reheat meal sized portions. Get frozen veggies instead of all those fries, it'll be better for you, or take an hour while you're studying and bake 7 potatoes for lunches, they'll at least have less fat, and if you threw in a couple of sweet potatoes, you'd get a lot of vitamin A. Also, if you have housemates, check your condiments, they maybe contaminating them, be sure to keep the butter, PB, jelly, salsa, and mayo clean and away from the gluten eaters.

Almost all of the blog recipes are gluten-free, but check for changes in the ingredients: Open Original Shared Link

You're right, everyone here has been very sweet about everything. Even just mostly lurking, I learn so much. I did get by my local whole foods, and the dairy guy there is great (if anyone is in Overland Park KS, shout out for Will!) He sent me home with some of the Vegan Gourmet Montery Jack and Mozzarella, which are totally milk free. Since they said no dairy, I didn't go the goat's or sheep's milk route, but if I don't have a migraine flare up after this 10 day dairy free trial, I may try some just to keep the diet a little lighter in dairy. Since I never really learned to like yogurt, I just needed cheese, milk and sour cream, which I got a tofu version to try in a recipe later on.

DH is a celiac and has been diagnosed since 2001. We know his diet and are doing well with it. I've had a LOT of trouble with migraines, and the neurologist I saw on Wednesday wants me to try milk/dairy free. I asked for clarification and the nurse told me to try to avoid any product with milk anywhere on the label (which means its not just lactose, right?). Obviously, this is all a new playing field for us, and I'm beginning to realize that there's milk in everything. I feel like I'm going through the first few weeks of going gluten free all over again, which in a sense I am. I'm not worried about his gluten-free snacks and crackers being lactose free, as I don't eat those (we are a mixed gluten house, but I am extremely careful and he has no issues with CC), but for main meal 'stuff' do any of you have any recommendations? I did get the Earth Balance 'Butter' spread, and it's really good, is there a vegan 'cheese' that's good (since I checked and simple lactose free still has milk proteins)? A sour 'cream'? I do want to give this a fair trial, as I'd been having daily migraines, and they stopped Thursday morning, which is when I started a new preventative medication and went dairy free, so if the dairy free is doing this much to help, I'll learn to live without milk. FYI- I did grab plain unflavored rice milk as a liquid milk substitute, I rarely drink liquid milk, and use milk as a baking ingredient, so I went with the one least likely to have gluten or cause any other food allergies due to exposure (soy). Finally, is there anywhere like here for an adult with a milk intolerance? Any boards I could find were all infants, which had good info, but it was about formula.

Thank you for any help you can give me!

I think Australia does the codex wheat as well as the UK, but I've been wrong before. If it's codex, some celiacs tolerate it, but many do not, and you may well be one that doesn't. I also know some of the UK celiacs say that they are both celiac and wheat intolerant, so the codex is not safe for them. Personally I don't know how a company can claim to have made wheat gluten free and still have it resemble and act like wheat.

okay I definately now know it's soy, causing a major problem with me...

I have only just started get over mt reaction to the cake, and have been ever so carefull about what I was eating, ensuring I ate nothing different, meat, fruit and veg,,,,,

but I got hungry tonight, and opened a pack of rice crackers.....

it clearly stated all over the pack gluten free.............and I had tried another brand of this rice crackers before without any reaction, So I ate away freely.......

Then 30 minutes later, it felt like a punching match going on in my stomach..........

it's grumbling and rumbling like crazy!...........

I thought , gosh I grabbed the packet of rice crackers to see the ingredients....

and whammo................there it is..................

rice flour,seasoning (sugar, salt, soy sauce powder.....contains ,hydrolysed wheat ,flavour

I am so angry!!!!!!!!!I never thought in a million years they would put soy sauce in plain original rice crackers...

grrrrrrrrrrrrrrrrrrrrrrrrr will I ever get use to this...............

I hope I don't awaken in the morning with gluten head....I hate that feeling!

The brand of rice crackers are "FANTASTIC" BE WARE!....they sure aren't too fantastic to me!

If these have soy sauce, with hydrolysed wheat, how can they be gluten free?? Are you in the UK? I know they have what they call codex wheat, which is supposedly gluten free, however is only gluten extra-light. You maybe what I hear people on the UK based boards refer to as a celiac with a wheat intolerance (seems silly to me as wheat=gluten). A lot of the UK prescription foods are supposedly the best tasting gluten-free mixes ever, because they have codex wheat flour in them, which means a small population of celiac's will still react to the gluten-free items and have to maintain a gluten-free/wf diet

OK, I'm going to be WAY out in left field, but reading your last post had me thinking. Are a lot of your battles over food at a point when your daughter's blood sugars could be either very low, or dropping like a rock? I know that dropping or low blood sugars can cause a lot of irritability, and with the teenage hormones, it just magnifies it. Since you have insulin, I'm assuming you're diabetic, and I know that diabetes can run in the family. I also know it's not uncommon for a person to be both diabetic and a celiac. In my mind, it would explain the cravings for all the 'junk food', she's fighting to raise her blood sugar, not knowing it's low. Knowing how you speak, and seeing your concern, I'm sure you've had your daughter screened for diabetes, but if its been awhile, it could be good to have a recheck.

Also, I'm glad that on the whole it was a good week! I hope for you next week will be at least the same, if not better.

I agree with all that everyone above has said, but just wanted to add to it. OK, you've slipped, you know it wasn't what you should be doing, and you're making a plan to keep it from happening again (at least I hope so), at this point, don't beat yourself up for slipping. Everyone has the occasional glutening, be it through CC or not checking a label that just changed. Get back on the horse, learn from your slip and move on.

She doesn't refuse to take a swallowable. She doesn't like to take them. She would refuse any sort of chewable though. I could get her to take the gummy vites sometimes, but not always. And they don't really contain very much in terms of vitamins. The problem is I just keep forgetting to give them to her and she never reminds me.

I would never offer her bread for dinner. Why would I do that? There's hardly any nutrients in bread, especially the kind she has to eat. I consider it to be junk food. I have on occasion allowed her to have cinnamon toast along with some meat, and a vegetable if she is being super fussy. But she hasn't asked for that in a long time.

Sorry, I misunderstood about the vitamin. As for forgetting to take it, I don't have a lot of suggestions.

I do understand your feelings about bread, but my mother refuse to raise us in a manner that would allow us to treat her as a short order cook. She would always try to get us to eat the veggie and the fruit if the entree wasn't one of our favorites, but if it came down to brass tacks, and all we would eat was bread and butter, she was OK with that, she knew we could make up the lost nutrients at breakfast.

What I'm personally noticing is that you've come here, appearing to ask for help, genuinely wanting help, but are totally unwilling to change anything in your daughter's life to achieve the change you want. I'm sorry if this is blunt, but if you're here to rant, and get feelings off you chest, please let us know, and we will sympathize and stop offering solutions. If you really do want things to change, you might try a few of the suggestions. I know you said you'd tried some of the things mentioned back when your dd was 4, but that was 7 years ago, and trying them again can't hurt. Other ideas that have been mentioned you just blow off or get defensive about. For example, her bread, there are nutritious breads out there, that have a place in a healthy diet as much as any gluten-free whole grain, assuming there's not a candida issue, but you automatically go to bread is 'junk food', which it maybe unnecessary carbs for your blood sugars, but maybe very necessary starches for your daughter in order to give her the energy she needs for all those dance classes you mention. I am not trying to make you angry, and I'm not trying to back you into a corner, but for 6 pages, very nice people have done their best to help you, and all you seem to have for them is scorn and a sense that your choices are superior to any of ours. If any of this did upset you, I apologize for the upset, but I feel that what I wrote needed to be written, and I do not apologize for my words.

I'm jumping back to the vitamins, and sorry if I'm misunderstanding, but you said that the Doctor told you she'd outgrown the children's vitamins and she refuses to take a swallow-able? I think that's how I read it. I do know that the 1 a day people make a chewable adult vitamin, and they state that they add no gluten to their products. Also, I took that box, and compared it to a children's multi, and there were very few differences, mostly the iron was higher in the children's which women need anyways due to women usually having lower iron levels. Dh eats little red meat, so I got him the flintstone type vitamins, since he was gagging on the swallow-able tablets. He takes one a day.

Also, as a non-celiac child, my choices were dinner or bread and butter. Take it or leave it and go hungry. I know butter is out, but there's got to be some sort of spread to put on gluten-free bread and that should be the only thing available other than dinner. Flat out refuse to let her pig out on junk food, keep gluteny stuff for dh that dd can't eat if it comes down to it, or get it all out of the house, as no one needs junk food. If she doesn't like your meals, she can cook for herself/go hungry. Same with your box lunches. She knows that the foods will make her sick, and she has limits, and as this is a recent rebellion, she knows how often she can/can't eat certain foods, so put it in her control. I know that mom's icky food sure tasted great after I'd been cooking for myself for 6 months after moving out. When I tried that phase with my mother as a teen, she put me in charge of the household meals for a week, no whining allowed, you don't like what I cook, fine you're the cook now.

I know you're catering to her foods issues because you love her, but she's seeing it as you controlling her, so cut the strings, she's grown up enough to not like what you're making, she can cook for herself.

I take the generic Synthriod, Mylan's Levothyroxin, and was started on samples of the name brand, I've noticed no difference between the two, personally. I know everyone's different, and some have issues, but as long as you're feeling well, stay with the same dose. Likewise, if you start slowing down again, have your PCP up your dose, or draw bloods for comparison. FYI- I'm not the celiac, DH is, so if the Mylan's brand is glutened, I wouldn't know.

All very good points, I guess I was just used to seeing DB so scrawny and ill and then found out that it's a food intolerance (autoimmune disorder) that I never even thought about it being sexually transmitted. BTW, I've noticed that they've removed the posting on the board, so the link may now be dead, but to any late comers, the question was asked if celiac could be sexually transmitted. I know a LOT of my giggles were due to the fact that I'd just spent the last 6 hours studying off and on, and was slap happy by that point.

OK, I know it's mean to laugh at the stupidity of others, but this was too good to not share with others. I follow a UK based board as well as the one here, and I literally ROTFL at this person's posting:

Open Original Shared Link

Even at the beginning of everything I _knew_ I couldn't get this from DH, even with the most intimate of contact. And that was way back when DH was just DB (darling boyfriend). Anyways, after LOL and having DH ask, 'What are you doing?' I figured I had to share it with other people who might laugh as much as I did.

I chose to put this here, as I think it's the best fit (this is about some celiac's special someone). If it's in the wrong place, please move it where it's needed.

ETA- it seems the UK board pulled the posting, as I paraphrase below, a celiac's very new girlfriend asks if condoms are enough to keep her from getting celiac. Sorry for the dead link.

I called Truvia last Friday (1/9/09) and their stevia is Gluten free, so if you use it, no worries.

I know it would be rude, but my personal reaction would be to wait for her to beginning discussing her BM's over dinner and immediately stop eating and flag the waiter. Ask for a 'to go' box, as you've lost your appetite. Wait for anyone to ask what or why and explain that you're sorry, you'll eat later, as you simply cannot eat while discussing BM's. As I said, it's rude, but it would clearly put your point across, and may make her rethink her behavior. While commiserating with a friend or family member is one thing, discussing stools over food may not be tolerated by everyone's stomach. This does have me assuming that at some point you've asked her to change the subject, as it's not appropriate dinner conversation.

The FDA has just approved of the stevia sweetener branded Truvia for consumption. It is now available in your grocery store, with the sugar and other artificial sweeteners. I've tried stevia, which has been used in plant form as a sweetener for many hundreds of years, but not the Truvia brand, and I don't know about it's gluten status. I know that the Truvia branded stevia is the only one currently approved (like Splenda was the only sweetener of it's type approved), but as other companies jump the FDA's hoops, we'll certainly see more. I found that even though it was labeled as an equal sweetener to sugar (able to measure out just like table sugar) it was sweeter than sugar, so I cut my amount back by about a third. It does have an aftertaste, but it's the first 0 calorie sweetener my body tolerates, and I'm looking forward to having a soda that has a lower calorie count.

heep70-

Thank you so much for posting that e-mail, it was just what I wanted to see! Hopefully DH will be able to have gluten-free Godfather's soon!

I have been able to get gluten free pizzas at Godfathers in Iowa for a couple of years now. Not sure if this is the same as the frozen pizza the original poster mentioned, though.

Thanks for your response!

I called the local Godfather's after reading about things this summer, and they told me at that time the gluten-free pizza was a local test market item, but if successful, it would expand. I was hoping to hear it had succeeded.