mindwiped

So my boyfriend has been dying to show me that he can make me a safe gluten-free meal. We spent over an hour at Wal-Mart last night reading labels. We love eating grilled meat, but I was having the hardest time finding any that I knew were safe. All the fresh steaks and such said that they contained broth. I don't know if that's safe or not. I literally couldn't find any steaks that I knew were fresh. Are these fresh steaks usually considered gluten-free? I don't know how to go about buying meat anymore. This is frustrating.

If they contain broth, there should be a manufacturer's phone number somewhere on the label. You'll want to call it and ask if the broth has gluten in it. Usually there's someone who has a clue, since a lot of celiac's have to call to find out. You might try a search and see if anyone else has called and knows a safe brand. Sorry this isn't more helpful, I usually grab my meats from my local grocery store, and they know what to look for, since they see me regularly.

It could be just the allergies, and nothing celiac related at all. I have year round allergies, but when ragweed goes into high gear, I have so much post nasal drip, that I start having stomach issues, since I can't blow my nose enough to keep it from going down my throat. Non-sedating antihistamines (Zyrtec or Clariten) could help, just be sure to check the gluten status on any off-brands.

I get it at my hyvee, although I did have to ask the health market manager if she'd grab the peanut butter chocolate flavor. I like the soy and coconut of this brand, but prefer to stick with the coconut whenever possible to avoid developing an problem with soy.

Yesterday I had some black tea (Republic of Tea brand) and immediately my stomach started acting up. On the can it say it's gluten-free as do all the teas I have by this brand.

Is it possible to have issues with black tea? It just seems like such an odd thing to give me issues.

Thanks,

Karen

Caffeine gives some trouble, also, if you drink you tea in the British fashion (with milk), you may be struggling with a milk problem. Hope this can help a little

Personally, my symptoms are fatigue, gas, loose BM's, about 4-6 inches of belly bloat, and migraines. I wouldn't be able to say either way if your symptoms are dairy or something else, but if you only have them after eating dairy, and only at that time, then they probably are.

Ok I might be over-reacting but we were considering eliminating soy and we realized it is in 95% of what she is eating. What do you eat when you are vegan and can't have soy? She cannot survive on fruits and veggies! Is there a soy free dairy free butter? Does anyone know which rice milk is gluten free?

I don't know if they are out your way, but I've been using the Hyvee store brand rice milk, although I like the almond milk better for lattes and drinking. Truthfully, as long as you made sure she got enough protein for a growing young lady (beans and nuts/nut butters) your daughter could be healthy, happy and survive very well on fruits and veggies. The only thing close to 'soy free/dairy free' that I've had recommended butter wise is ghee, but it's still clarified butter and it bothers me. Some people on the boards, Riceguy I believe was one, spoke highly of the coconut oil spread (Spectrum brand I think). They say it tastes nice, if coconutty, and works well on toast, in popcorn and as a baking substitute.

If you do have Hyvee's out your way, double check the rice milk, I just remembered that dh (the celiac) won't drink it, so I was just concerned about dairy (my intolerance)

Good luck on your trial of soy free!

You know the old line about assuming things, right? The Mexican restaurant chips are probably contaminated, since if they fry in house, they probably use the same fryer for the chimichangas, which have wheat tortillas. You really need to ask the server/manager anywhere you go out to eat, and never assume its safe, just because you think that it is. If the chips are made in house, they may be dusting the work surface with wheat flour, and you'll never know if you don't ask. I know, I keep saying 'if you don't ask...' but that's where you're probably getting contaminated.

Cross contamination is going to make this tricky, but do-able. First, they will need to make the gluten-free treats only when there is NOTHING being made with gluten. Then, everything will have to be washed down to eliminate surface gluten (counters, anything left out where gluten flour can dust it) They will need a specific mixer, spoons, bowls and pans that only gluten-free items are prepared with (I'd suggest something in a color completely different from what they have now, so they know it's the gluten-free spoons, pans...). As for the treat itself, I'd go with a flour-less chocolate cake or a 'monster' cookie, but with the cookie, they will have to get gluten-free oats, and oats are a concern for some. If you google flour less chocolate cake, there are many different recipes, find one that looks good, and make sure to tell the bakery which brand of everything to buy ingredient wise, the chocolate and vanilla must be gluten-free. Since the cake doesn't need any special gluten-free items to make it work, it will be easier for a chef whose not used to cooking gluten-free to prepare, as there's no need for flour blends or xanthum gum.

Reading all this has made me feel so lucky. I got started on the name brand Synthroid, 25 mcg, and felt so well on it the doc upped me to 50, and ran the blood work to check my levels. By then the free samples ran out, and my insurance requires generics whenever possible, so I switched to the Levothyroxine, and never noticed a difference, which is not the normal from what I've read. I'm on the 75's now, and at least the thyroid part of my life feels so much better! I think with any medication, there are those who response wonderfully, and those that have more trouble. Take care, and I hope you get it all figured out for yourself!

okay thanks.....does that include Unithroid or is it limited to Synthriod? I guess that means you are taking Levothyroxine.

I take the Levothyroxine, but DH is the household celiac, so I'm not as careful about checking my meds. If you get ahold of your pharmacist, either they can call the manufacturer, or get you the info to do so and check. Levothyroxine, is generic Synthroid, so if the manufacturer is making it 'off label' than you might have an issue, so I would call and find out. I'm glad to hear you're doing better!

pele- you're right, some of these dairy substitutes aren't the healthiest foods out there, but there are a few dishes that I am just not quite willing to give up yet that do require a dairy substitute, which is why I was asking for help at the start of this thread. I did try many of the items, and for the first week or two, my processed food intake was probably quite a bit higher than I was used to it being, since I was looking for and trying substitutes. I am trying to avoid the soy based substitutes, as the more I read about soy, the less I want it in my diet, however the only truly milk free cheese I have found in my area is a soy based substitute, so I try to keep my cheese consumption down. I have tried rice milk, mostly to bake with, as I have never been a 'drinks milk by the glass' person. I will confess to having a sweet tooth, and really enjoy the 'So Delicious' coconut milk ice cream, but I did not think that the coconut milk itself was highly processed. I will admit that by the time it's ice cream, it's been processed, as would any ice cream, whichever milk base you were using.

I do know how easy it is to read a thread, and be certain you know what the issue is, and I am not trying to fuel any flames here, merely agree that I did have a few weeks with a lot of dairy substitute 'junk food.' I do think it's easy to have a very un-nutritious sounding diet when all you're asking about are substitutes for foods that can so easily be junk food. After the revisit to the neuro and the diet modifications she has placed me on, I am eating very nutritiously, and am cautious about making any major modifications without passing them by her, as she was very adamant about me being on her diet. Therefore, if I sounded defensive to anyone, I wasn't trying to, and I hope you'll forgive me.

Thank you all, I know you're all trying to help get me/keep me healthy!

AliB- Not a big deal, I just know that there are those out there who assume all prescriptions are evil, and tell all those to stop them immediately, and with this particular combo, that wouldn't be good. After DH was diagnosed as celiac, I did have the panels ran, and this was as a full blooded carb queen, so I know that the tests would have been positive if I were celiac. They also did an upper GI scope about 2 years after DH's diagnosis (on me) and there were no signs of any villus blunting.

For all- I will watch for signs that my occasional gluten (toast in my own toaster/cup o soup) may be leading to celiac type issues, I am certainly familiar with the symptoms

Rolling Along- we had the thyroid dose settled prior to going on the Topamax, but the nuero's running labs to check all that, I think just because of how strangely I reacted to the meds. On the essential oils, if you have any pollen allergies, avoid any oils in the families of anything you're allergic to. Last night was the last dose of Topamax, and I'm doing well today, the gym really is helping, I'm just struggling to get myself up in the morning and get there.

Ali B- Thank you for your thoughts, we do try to eat as natural of a diet as possible, and with as much nutrition as possible. I cook as many of our meals from scratch as time permits, and keep a few 'cheater items' around for meals on the run. Last night's dinner for me was a large portion (probably 3 portions-it tasted so good) of sesame stir fried Kale and a small portion of steak, followed with a half serving of homemade zucchini bread 3 hours later that I needed to help get the evening pills past the point where they got stuck.

I would love to be off all the medications, but for this particular moment, stopping them cold turkey would be BAD. The Topamax is an anti-seizure med and has been approved for use as a migraine preventative, which is why, after 26+ days of migraines in January, I was willing to try it. Once you taper up to your holding dose, you must taper off. If you stop this medication cold turkey, it can cause seizures, which no one wants. This is why I'm currently on the Neurotiun and the Klonipin. Both are to help me taper quickly, without seizures or other unwanted side effects. After I get off the Topamax and have it out of my system, I am to begin to taper the Neurotin and Klonipin, until I'm only using the Neurotin if I actually have a migraine, so hopefully with the dairy free diet, I will shortly be using it less and less.

"The very fact that you are getting the migraines suggests that your liver is already in overload mode." When I began getting these migraines I was on 2 daily medications, a diuretic for vascular migraines and a thyroid replacement pill, while I was concerned about rebound/MOH migraines the thought that Synthroid or verapamil would be giving me these headaches didn't cross my mind. I'm on the verapamil to prevent episodes, in fact.

While I understand you feeling about medications and will respect your point of view, right now, the hope is that dietary changes and some medications will take away my pain. Please realize that SCD/Paleo/etc will not be the fix for everyone, and I have looked at those as possibilities. But thank you for voicing your thoughts.

It's been another couple of weeks, how are you doing? Just wanted to check in and see if things had gotten better.

Just checking in on you, have you heard anything or figured anything out yet? Hoping for the best!

OK, well I did the neuro's yesterday, and the doc confirmed what I was thinking. I'm not a good candidate for Topamax-- I didn't want to just put a bunch of stuff out before talking to her, but I was having severe panic attacks, and really bad brain fog, along with a bunch of other stuff. Last Friday I was supposed to increase my dose, and just thinking about doing that set me into a panic attack, so I decreased my dose instead. I am doing a quick taper off and I've started Neurotin and Klonipin. The Klonipin is because I had an attack in her office, and she knew I'd need something to work the Topamax out of my system and the Neurotin is to help with the quick taper down, and then I'm supposed to take it with my rescue meds, to increase their effectiveness. I've also got a list of supplements and I've been prescribed to go to the gym every morning, to help with the anxiety and hopefully decrease the attacks. She's thrilled that I went dairy free and it helped as much as it did, which is why I think we're working on pulling me off of preventatives, other than my verapamil. I really like this doctor and her office staff, if there's anyone in the KC metro who needs a neurologist, please send me a message, I'll gladly tell you who I'm seeing.

The dairy free is still going well, but I boo-booed today. I grabbed a new 'vegan' cheese and after shredding it onto my pizza I see that it has a trivial amount of milk. Blast! I was hopeful as this was a nut cheese, and I'm trying to watch the soy intake. Maybe the Purely Decadent people will make a coconut milk cheese, as I love the coconut milk ice cream, and I've seen the yogurt, but I've never been a yogurt person.

Fragrances are funny, I work in a store where we sell handmade bath, hair and skin care products that are highly fragranced. Not a trigger, because other than synthetic musk (they use no animal-harmful ingredients) it's all essential oils. Walk me past the perfume counter in a mall and I'm holding my breath, trying to avoid triggering an attack. Sunflowers, the perfume from the '80s would do it every time, and walking past an Ambercrombie and Finch is almost a guaranteed migraine. I've learned, actual essential oils, I'm fine and I love scented products--Synthetic perfumes, no way!

I'm glad to hear what you think about the sub lingual allergy drops. I did it the old fashioned way with the injections. It helps, but, I think that the sinus surgery helped just as much, and going off dairy has amazed me with how well I'm handling things going into bloom. Not to go too far into TMI, but I'm actually draining, not just sitting there all stuffy, and I'm not using decongestants to start the drainage.

Rolling Along- thank you for all the advice and help. I'm sure I'll be back on here asking for more, but I wanted to be sure to let you know that all you've shared is VERY helpful, and has made thing much easier for me and my DH as we work on getting everything changed over to gluten-free/df

I should have known better than to brag, I jinxed myself. Two doses of Frova later.... ick. Yes, we're just a happy household of dual migraine fun, but at least we both have sympathy for all of each other's special needs. I totally get his ice cold, roll down the car windows in Jan to freeze his migraine away, and he completely understands my don't bring ANYTHING scented, not even toothpaste breath near me, or you're going to take care of 'the bowl.' I understood his gluten-free life, but now that I'm df, I'm beginning to understand the withdrawal cravings a little better. I'm gluten lite, but if I'm eating outside the house, or a containerized gluten, that won't contaminate (cup o soup) I'm not gluten-free. Now that I have to be the one picking apart the menu for me, not just him, or worse, picking it apart for us to share, especially at a restaurant (now I need a little screaming smiley), I realize how much tougher our lives just got. But then I look at my waist, in two weeks df, I've lost about 5-8 inches in belly bloat, along with 7 pounds of weight from the Topamax/df diet. When I challenged the df diet, the next day all the pants that were so nicely loose, were all back to the comfortably tight again, and I don't need anyone to hit me with a stupid stick to make me realize that that's the dairy, gassing me up like a balloon.

OK, I need to stop whining/ranting, or I'm going to open a bottle of wine and have a pity party. And I don't need that! As for the rescue meds, yes, they're not cheap at all, which is why I'm trying to stick with the Topamax, but I'm not sure it's preventing any, and the brain fog and the tingling are really getting to me. I see the neuro again next week, and it's going to be a subject of discussion. Thank goodness that dh's employed and has decent medical, and they do OK with Rx coverage, or we'd be in trouble.

Thank you, mindwiped, that is good to know. Now, all I just have to find out is where in the world I might find it. As I said in an earlier post, I've no access to Whole Foods or some of the other places I've seen mentioned here. In this state, it's just Wal-Mart/Sam's and they don't carry it. I'll keep trying.

Are there any other grocery stores besides Wal-Mart/Sam's? I've found it in Hy-vee's here in KS, our Dillon's (Kroger/Bakers/King's family) would have it, I've heard other's speak of finding it in Safeway's in their areas, and if you have any sort of 'natural' store, they would probably order it for you. I'm also sure a Publix would either have it or could order it for you, they seemed good about gluten-free/vegan/health food at the one I've seen. Wal-Mart might even order it for you, but you might have to commit to buying it by the case in order for them to do that.

The Follow Your Heart Vegan Gourmet that Janet mentioned is one of the better cheeses I've found. It is truly vegan-which means they aren't hiding milk proteins, and it melts really well. I will say that it is a softer cheese, and especially after freezing and thawing it seems to have some excess water, just so you are aware. But it has great flavor, and makes a great gluten-free/df pizza.

Thank you for the forum links, they've been quite helpful! I've been migraine free for nearly 2 whole weeks I'm no longer a dopamax zombie and I feel really good for the first time since Christmas. This is Great!!! I have only been to the first two forums, but they were quite enough info, as they've got me pushing dh into going back to the pcp to get into my neuro (I've been thinking he's been using the rescue meds way too much, but I haven't felt well enough to begin the doctor battle with him) Having other migrainers telling him he's using too many meds, both OTC and RX is really helping build my case for me.

Sweetie, Sorry to be the one to tell you this, but this is the celiac's equivalent to 'White or Wheat' Bread? A lot of the answers are going to be preference. There are a few flours I found repulsive, but that's my tastes. For me, the biggest part is, unless your recipe only needs 1-2 Tablespoons of flour, do not use any single flour. Find a flour blend you like: domata, bob's red mill, featherlite, bette hageman's, I know they're more out there, these are the first few commercially available ones I could think of. You can also find a personal blend and make your own, if you wander around here, many people have posted various blends.

Down in the other intolerances section I have a thread about dairy issues and celiacs, the people there gave a lot of great advice to me to help me on a dairy free road.

Good Luck!

Mine is not a gluten success story, but I will share hope. DH is a celiac, and since January, I have been suffering long multi-day (12 and 14 day) migraines. My PCP sent me to a neurologist after the second one, knowing it was out of their league (hooray for an educated PCP) and the neurologist's first approach is two pronged, a preventative medication and a dietary change to see if an unknown milk allergy is aggravating the migraines. I went completely dairy free for 8 days, and challenge, per the neuro's advice, BAM, migraine day nine. I'm dairy free and mostly migraine free (crosses fingers), but even if this isn't the trigger, I feel so much better off dairy, I'm not going back on it, even if I could without the headaches.

DH started feeling better right away, even when I was still making stupid newbie mistakes (soy sauce etc), but when I went dairy free, he went extremely dairy lite, and it really seems to be good for him, so he may end up going gluten-free/df, just because his stomach and his head are both happier without dairy and gluten.

Yes, it can be the thyroid meds, and yes, just 3 doses can be enough for you to know there's a problem. I know the name brand Synthroid is gluten-free, I don't know about the others, that may need to be checked, also, there are different formulations for thyroid meds, synthetic vs natural, T3 only, T4 only, and T3/T4 combo pills, plus I think there are liquid and pill formulas, so you may need to go back to your Dr. and tell them what's happening and find out why you're having trouble. Constipation, or slow bowels may be due to gluten or not having enough of the thyroid med, since that will slow down your digestion. Also, the binding agent in the pill may just be one that slows your bowels, gluten or not. The edema and the heavy heartbeat, I don't honestly know, call your doctor.

I'm in the same place - do I still need that 50 mg of Topamax? I think I do get rather stupid right before a migraine, (prodome?). And lately I sometimes just get the stupid and don't get the headache.

What is your preferred migraine forum, BTW? This is one of the highest quality boards ever, IMO.

Migraine forum? I haven't even looked for one of those (why don't we have a hand slapping head smiley?) I guess feel free to recommend any good ones of those you know of, if you please. I started the topamax the same day I went dairy free, and they are trying to titrate me from 25 mg to 100, adding 25mg each week. I did OK with 25, just said farewell to all the soda, but the first 2 days at 50, I was a mess, I had a bit of a reaction getting used to it and had brain fog and panic attacks, so the neuro's office had me split the dose and take half AM and half PM, which really helps. Unfortunately, I am almost at the point where I need to go to 75, and I'm scared to do it after last week's reaction. I do think I am staying at 50 for an extra day, simply because I need to be OK in my Thursday classes, but if push comes to shove, I'll just miss the Friday lab, it's no chemicals this week and the professor would let me play with the models in his office with a note from the neuro. Usually the migraines themselves just make me distracted and short tempered, but not stupid. Frova makes me a space cadet, but it gets rid of the migraine, so it's worth it. Between the Dairy Free and the Topamax I seem to be doing so much better migraine wise that I'm hoping to avoid the frova, and hopefully I'm worrying for nothing about the next dosage increase. I grabbed a pint of the 'Purely Decadent' Yesterday, but my Hy-Vee only had the soy, not the coconut. I have them working on getting the coconut ice cream and the Vegan Gourmet Cheese. Their Health Market person is the nicest lady ever! She already knew me from dh's celiac's, asked how he was doing, and got an earful about me instead of him. If any of you out there have they Hy-Vee's in your area's please get to know your Health Market people, they *will* take care of you!

I do have some headache/migraine response to weather, we had the snowstorm come through with the dairy challenge, and I'm sure it aggravated it, but I know if I'm feeling one of those migraines coming on, to either hit my nasal spray or the OTC afrin. I also know that blood pressure spikes are a trigger, the first round of 'what in the world is wrong with me?' was solved by a diagnosis of vascular migraines, and so I take a blood pressure medication, so that it can't spike and trigger an episode. I was working childcare, and about 5 PM, the noise and stress would just have me tense a little, and the would trigger a full blown event. The other trigger is extreme stress, the last doozy was going to visit Dh's grandparents. They love him, but grandpa smokes in the house, and they have a dog, so I'm an allergy mess (it's in BFE Oklahoma-no hotel-no grocery store in town). And they try so hard to keep dh gluten-free, but every time she's forgets something, which for a 70 year old woman, who's not having to do this daily, I love her for trying, but....you all know how that goes, and he loves her to much to tell her, so I can't step in or I'm the evil grand-daughter-in-law. Anyways, yes, I am very lucky, 10 days after getting to the neurologist and I have a answer, and its working for me. Now if I could figure out if I really need the Topamax, or if it's just making me stupid...but this isn't necessarily the board for that.