thleensd

I know some of you have shared similar experiences, what did you do?

I'm too weak for a normal job. I have a couple good hours in me per day, but have a few more than that if I can be at home and work on and off (like on my computer). I tried to work for a while, but was running myself into the ground, getting worse instead of better. It seems that rest and LOTS of food is the best remedy for me. (And, I'm getting better... just not very fast)

Long story short, when I was working, I thought I was paying into disability, but I wasn't. So, I can't have state disability. I meet the criteria for federal disability, but in order to qualify, you have to have been disabled and not working (not working, not collecting unemployment) for an ENTIRE YEAR! I can't afford to do that, and I'm running out of money. It's frustrating, because I've been very responsible with money in my life, but am now whittling away my savings.

I know there are plenty of disabled (for lack of a better word?) people that figure out how to make enough money to live.... but I don't even know where to start! I am college educated/masters degree, but not in a computer friendly field (music/teaching).

Now that my brain fog is lifting, I've had a million ideas of home based businesses run through my head, but none of them actually seem feasible without either a tremendous amount of energy or start up funds. For sale: gluten-free cupcakes, $25 each. What a bargain!

Any brain cells firing?

Yeahhhh... I definitely wouldn't go all raw because I'm trying to gain weight and tend towards iron (and other vitamin/mineral) deficiency, not to mention my gut isn't digesting things as well as it should... but I have some veggie/vegan friends that seem to be doing pretty well. I guess we all have to find what works for us.

Living in San Diego, our winter is pretty short, and we more or less have avocados and pineapples year round. Of course, finding organic/local is a little tougher... but I seriously can't complain.

GAPS looks complicated. Of course, what we do looks complicated until you figure it out. =)

I bought a raw recipe book because they have some wonderful ideas for crusts and wraps. Many of them are dehydrated... but the pictures sure are pretty! I wonder if I can get them to look that nice.

Peace.

I take Floravital, it's a lifesaver for me. BUT, Iron absorption is easily affected by other things. This explains it pretty easily:

Open Original Shared Link

YES, I believe we should all be taking Magnesium (I take a liquid form), but when you take it is important. Take Magnesium with Calcium and D...but don't take it at the same time you take your iron.

BTW, the Mag I take is "Mega Mag" by trace minerals research. I usually drop it in some apple juice and chug it (shot style!) ... doesn't taste that good.

Understandable... You're not alone.

For me, one of the things that helped me get diagnosed was gluten-induced anxiety. When I went gluten-free, from time to time I would get the out of nowhere just sitting there and BAM! anxiety. Remember that your body is now in big time repair mode, and it doesn't always discern real danger from fake danger. Sometimes it's right, and sometimes it's wrong. Like Marz says, learn to embrace that moment. (I know, easier said than done) I would think, "Wow. Fascinating. My adrenal system is fascinating." Then, console yourself like you would a child scared of a monster in the closet.

I'm a new BIG believer in the importance of nutrition. Take your vitamins. Eat your veggies, meditate, enjoy quality people.

That being said, keep your eyes open for possible triggers, in case it isn't a false alarm. I found that most of my anxiety happened when I needed to eat (kinda like low blood sugar, but my blood numbers were fine)... hormone shifts also trigger it. Also, when my ferritin or B-12 drops too low.

Best. =)

I read an article that there was a gluten-free family in Rexburg, ID that started bringing rice bread. Same thing there, it turned out there were other gluten-free people that needed it. They ended up training the people that handled the bread that the SAME PERSON would only handle (break) that bread, then only gluten-free bread was on that tray... and everyone has gotten a Celiac education!

Bravo, and a good reminder for all of us to speak up!

I totally hear you on the brain fog thing. It's been two years gluten-free for me, and I'm still pulling out of it. The good news is, I have more and more hours of clear thinking as time marches on!

What has helped me:

Sleep. I know it's not always possible, but it's your body's healing time. Find a way to get more.

Water.

Veggie Smoothies (Blendtech blender... throw in carrots, celery, frozen grapes, a bit of juice and water).

B-12 AND a good multi (that contains coQ10 and quercetin). I feel a NOTICEABLE difference when my multi kicks in daily.

And, Floravital (by floradix). The stuff is crazy expensive... we call it "crack" at my house, because when I take it, I have reasonable energy, when I don't take it for a few days, I drag. Totally addicted.

Be careful, though, if you try the floravital, there's an almost IDENTICAL package, except for the writing that contains gluten. BLEH. The stuff if B vitamins and iron in a liquid form... so it absorbs quickly and well.

Wheat, by law, must be labeled in the US (but not necessarily "processed on equipment")

Brain fog sucks.

Good luck.

Before I was diagnosed, and therefore gluten-free, I had so much of the craziness many here have shared. I've been glutened twice that I know of by tiny amounts of gluten. First...I was working at a high school, and some kids had crushed cheerios right outside my door. When I went out to tell them to clean it up, a big gust of wind came up. I kept my mouth closed, but I know for sure they got into my eyes (I could feel it... ouch), and probably into my nose. Within a few hours I was doubled over on the floor, cramps, D, etc. The second time was at a restaurant (where they have a gluten-free menu, and the manager assured me they were careful). I don't have allergies, and no one else got sick from the same dish, so it wasn't food poisoning. Same thing happened.

It seems now that I'm gluten-free, my body's first and main reaction is to get the toxin OUT!

Good luck.

So, this came across my google alerts today: Open Original Shared Link (which links back to the celiac.com site...nice) =)

I see that they're going to have pre-wrapped rolls, and one time use knives, and have the same person prepare the sandwich. All good things. I like. I wonder about the other cc issues though. How many times have you been to a Subway sandwich type place where they put some lettuce on... but it's too much, so they take their gluten-bread laden hands and put the lettuce back.

Trying not to be too cynical here, I HOPE they get it right!! So, Dallas! Help us out! Let us know how they do!

I see this is quite a few months old, but have you had any luck? When I was first diagnosed, I couldn't digest most raw foods... I still have some trouble, but I've been juicing (whole juice, actually)... just throw it in the blender and chug. It's much easier than trying to chew a salad.

I'm still trying to gain weight, and I do love me some juicy steak, but I've been re-thinking some things and am going to try some raw uncooking. I've been to a couple raw restaurants, and the last one was amazing... it's what has started me really looking.

It seems to be quite a learning curve when you get into dehydrating, sprouting, etc, but by incorporating more of this into my diet, I'm feeling a bit better (although it could still be a coincidence at this point) =) I still have fairly debilitating fatigue.

The thing I haven't figured out is how to have TIME to do it all! There are some wonderful looking crackers and wraps that I think many Celiacs would love to eat. I think I need someone to tell me/show me HOW to do all of this within a schedule. (I mean..I've just now started to master making food that can be used as decent left overs!)

I flipped through this book today ....

wow...I just tried to post and it says the company spammed this forum. Mkay, I hope it was the retailer, not the author. Ani's Raw Food Essentials was the title. It had some wonderful looking food. Just not sure I'm ready for that much work. But I'll start with a few things =)

Please share if you have any success!

This is a great idea! Hopefully some more people will add in. I'm always looking for good food ideas.

B-Egg, Apple juice

S-Fruit/yogurt smoothie, cheese, bacon

L-Home made veggie soup, celery with almond butter, shepherd's pie (beef)

S-More cheese and apple juice

D-Pork chop, baked potato, honeydew melon

Later I'll probably snack on some Boulder Potato chips (YUM!) with some sour cream dip

Thanks. By Seattle proper I did mean the city downtown, but since I don't know how the neighborhoods work, I didn't realize all of those were Seattle. I will have a car, so I don't mind driving a bit. =) These places look great. I'll definitely try the Flying Apron and probably Cafe Flora. I saw mixed reviews about Wheatless in Seattle, but I may check it out because I can. After spending some time on google and yelp, there seem to be quite a lot of options. I generally don't trust chains like Outback, because you never know from day to day or city to city who will be working there!

The ones I listed are ones I particularly trust.

Flying Apron is entirely gluten free (aside from a few items they make with gluten free oats which are plainly labeled).

Chaco Canyon is a primarily vegan/raw food place, so while they have bread on the premises, they are all quite knowledgeable about the basic ingredients making up all of their foods. (And it's plainly listed on the menu.)

Cafe Flora is a fancy, limited menu, restaurant that is also well known for the chef being very aware of gluten issues (and other food allergy issues).

Ditto for Pizza Pi, though again it is a shared facility, they're focus is on vegan offerings, and they stay quite aware of what's in their food.

(The "funky food" places tend to be more aware because there are ingredients that they want to avoid for various reasons.)

There are a couple other places mostly dedicated to gluten free - DaVinci's changed it's name (Wheatless In Seattle?), I think, and there's a bakery down in Kent and one in Maple Valley (but there's no need for the half hour drive if you're in Seattle proper). Google will help direct you to those places that specialize in gluten free as well.

Edit: I realize there might be some confusion as you said "Seattle proper". All the places I listed ARE in Seattle - those are the neighborhoods of Seattle. If you mean downtown Seattle, then you're in a spot where Yelp reviews are what you'll have to rely on. There isn't as wide a range of options downtown as in other places, but there are a few. (There's a Thai fusion place under the convention center... can't think of the name of it at the moment.)

I'm heading to Seattle proper in a couple weeks. Know anything good there? I don't always trust yelp because I'm super sensitive, and have had glutenings after ordering off of gluten-free menus even after talking extensively with what seemed like very knowledgeable managers. ...and I don't have other foods that do that to me. So, no food bars, etc for me! =)

If anyone has any trusted restaurants in that neighborhood, I'd love to hear about them!

Yelp has a gluten free section that can help you find places - but check the reviews to see what people have actually said about them, of course.

Flying Apron bakery is in Fremont.

Chaco Canyon Cafe is in the U District, not too far away.

Cafe Flora is just south of the arboretum, and pricey, but I hear it's quite good.

Pizza Pi in the U District also have gluten-free (and CF) pizza.

Whole Foods, of course, has lots of gluten free options, even in their food bars, if you're ok with those.

Yelp and Google will find you a bunch more. It's not too hard to find places in the area that can meet your needs around here. (I'm on the eastside, and tend to favor Thai Ginger or a local, small sushi place.)

Reading these posts made me start thinking. (Guess I am in the right place! ) I was diagnosed with "atypical migrains". It would distort my vision, and the last episode, when I got the diagnosis, I had numbness in my left arm and my lips. It only happened twice (though the numbness caused enough concern I ended up at the hospital) so I have no clue what I might have eaten. I was not gluten MRI's ruled out anything going on in my brain (actually they said my brain was insignificant ) But after that I had multiple times it felt like hot pins were being stuck in my arms and legs. I realized since I have gone gluten free that I haven't had any of these sensations. Has any one had similar symptoms?

Yep! First time I was about 13 and shopping with my parents. One hand, then arm, tip of nose, toes, foot started to tingle. Everyone thought I was having a stroke. It happens from time to time still, but FAR less since going gluten free and becoming less malnourished.

Also, you may consider looking up "peripheral neuropathy" ... may or may not find some similarities there.

I can relate to the stumbling! I've always found it hard not to walk into things, like I bump into people walking next to me or I clip the edge of the door frame as I walk through into a room - I sort of tip towards things; I always thought I was clumsy. I had particular problems with walking down a corridor with people walking towards me, it makes me feel even more wobbly and all too much to deal with, I'd often stop so they can walk past me. These things have resolved considerably since I went gluten free.

Me too. haha...I used to be such a graceful person... or at least athletically coordinated. Now I walk into walls all the time - especially hallways. Ok, not all the time, but it IS getting better (1.75 yrs gluten free), except when I need to eat. Then it's right back to drunken stagger.

An unknowing acquaintance told one of my gluten-free friends to eat some of those pink and white animal cookies. Ah...., mainstream processed junk food. My new gluten-free, corn-free, organic life seems so far from there.

I used to eat out all the time, and I now frequently drive past my old favorite restaurants and remember my "last meal" there. One day I'll be able to re-create my favorite snacks and meals (in my fantasy kitchen), but until then, I'll "enjoy" my flashbacks. At the risk of opening an uncomfortable can of words, what do YOU remember?

When I was starting to get sick, nothing tasted good, so I tried a LOT of different things which I very fondly remember the taste of. Remembering the last time I ate:

-pink and white animal cookies

-Del Taco (it's nasty, but oh so good)

-Afghan restaurant across town

-Cheese dip at Miguel's restaurant

-midnight rolled tacos with sour cream and guacamole from Alibertos.....

...so much more

Sometimes there's just nothing wrong with a good cry. And then another. I feel like I've done way too much of it... and I completely understand feeling like the grief won't end.

When I was at my acupuncture treatment this week, we were talking about how I'm having such a hard time with it all, especially "letting go" ... he said that I need to let myself experience those emotions and grieve. There is no way around the emotions, the only way to the other side is to barrel straight through them and allow yourself to feel the anger, pain, disappointment, frustration. It's HARD to let go of our old ideas of how social life works. Food with friends was so central. But, we'll all find our way.

And then, after the cry, the next morning, pick yourself up and make one more attempt to live life on YOUR terms. Me? I'm getting my house fixed so *I* can be the party host. And, while I, too am scared of travel and restaurant food (got hit at a seemingly VERY knowledgeable restaurant two weeks ago today and still recovering!), I found the one hotel in town with the kitchenette and will find the one health food store in town. I fully intend to show up at a two weddings next month with my own brown bag lunch. Maybe I'll even splurge on a gluten-free cupcake or cheesecake to bring with me for dessert.

My friends are getting used to me carrying my "feed bag" with me wherever I go. It becomes a non-issue.

Best.

Certainly you need to test B12, full iron panel, and D. My D was low and ignored until my *physical therapist* noticed! Mega doses of D followed, which kind of helped, but now I'm back in the "barely functional" energy range... and I don't know why either. Frustrating, isn't it!? I find that eating frequently helps a little... but something is still very off.

You definitely need to press for more tests. Although... quite often, vitamin/mineral deficiencies don't show up until they are very low. I think I'm being affected by "sub-clinical" deficiency issues.

I have constant low energy levels and often have very extreme energy crashes out of nowhere. My iron levels are actually okay. My problem is low Ferritin levels. Ferritin is the protein that stores your body's iron and releases it as needed. So basically I have no reserve battery.

So when you get your iron levels checked, make sure they include Ferritin levels.

This sounds very familiar. Mack - what are they doing about your low ferritin/normal iron? I have low ferritin (but "normal" on their scale - barely). When I brought this up to my GI doc she pretty much shooed me away and said "don't worry about it". I don't agree. It's up to 20 (as of three months ago, but a 10 point drop since before then), which is much better than last year when it was down to 2 (!!!). Still, I'd like it higher.

I'm not sure where to go next, though.

Good luck!

Thats a great article. I guess I always thought in the back of my mind this could of course happen, but to read that samples analyzed actually had enough of an amount to make celiacs sick is upsetting. Is this true for rice as well?

thanks for posting

After I saw the abstract of this article the other day, I decided my grains needed a little more research. I emailed Lundburg farms, and they test their products for gluten contamination (I don't know if they test their plain rice, though...) They did say they don't have much control over what happens before it gets to their factory, but are very strict within their factory. Probably one of the safer companies, though. Bob's Red Mill also tests for presence of gluten.

That being said, the companies that are aware and do test are the ones that will get my money, even though they're generally a bit more expensive.

I wish the article gave specifics - company names and products!

I hope the FDA is carefully considering their new rules. ...."Millet: a naturally gluten free food ...but not really if you're sensitive. Or if you're not sensitive and we weren't very careful. Whatever. Here's a coin to flip"

We do something similar, visual inspection with a three wash procedure - we just do not use soap. I think soap would make the wash procedure more effective, but I just cannot do it . . . yet. And I am trying to improve our visual inspection process. It is just part of our routine now, and my kids are loving the pancakes, cookies and cakes!! We had to drop all grains except our rice as we were figuring out our grain cross contamination issues. It was all so confusing. It still is confusing at times. But to quantify how long it takes . . . it will depend on each individual's circumstances. I process our grains like that for a family of five, including any special functions (like school events). And I bought some special equipment to help. It is just a different approach to food consumption, and it seems to take far less time than recovering from constant gluten exposures did! And we have been able to eat so many fun and exciting things without suffering - what a joy!! But our wash procedures are not effective on gross contamination of grains. I failed to be able to fully clean contaminated millet and buckwheat, so we are still limited by access to carefully sourced grains (including harvest, transport and packaging procedures). We also use this process for our nuts and beans. And I feel like I am *always* behind on production! But we are having fun with it all, so that part is good.

Here is a recent study addressing this issue, validating what a concern this is for some!

J Am Diet Assoc. 2010 Jun;110(6):937-940.

Gluten Contamination of Grains, Seeds, and Flours in the United States: A Pilot Study.

Open Original Shared Link

Thanks for sending this other study. It's very helpful.

I would love to find the whole article, but I don't know where to find it. I bet it has some excellent information. Does anyone have access to more specifics on this study?

And to think they told me "just don't eat gluten and everything will be fine."

HAHA! *sigh* Yeah..... totally understand. Good luck... Let us know how it goes. I recently finished up 6 weeks of 50,000 once per week. Brought my levels up from 18 to 59. Just trying to figure out my maintenance dose now. Going to try 2500/day and get retested soon. Now I'm thinking I want to be closer to 80. Still have struggles with fatigue...

Make sure they test your calcium too.

I am very sensitive to trace gluten. To eat grains, I buy then whole and then go through them grain by grain. I bought my millet from a millet only facility. They said that there wasn't any wheat grown within 100 miles and no chance for contamination. In the 25 lb bag, I found roughly 50 grains that looked like wheat. When questioned they said that they do use shared harvesting equipments. I get my sorghum from a place that cleans their harvesting equipment for two days before harvesting the sorghum. Then the first bit goes to non gluten free sources. My first 30 lb bucket had one piece of corn. My second had two pieces of what looks like wheat.

After sorting the grains and removing anything that doesn't belong, I triple wash it with soap, rinse well, dry and grind.

I don't think that the contamination that I found is enough to bother the majority of celiacs, but it is enough to bother me.

WOW! How long does that take??

ppm is mg/kg:

Open Original Shared Link

Get a new doctor!!

As yourself how important a formal diagnosis is. You know your body. Are you convinced enough to go gluten free for life? Even if it's not Celiac, you've clearly found a solution to feel better.

If you are still deficient in vitamins... maybe your gut is still damaged and would show on a biopsy? (which most won't do unless the numbers support it...)

Good luck!

I am REALLY careful about what I eat because I'm super sensitive. I'm not getting better as fast as I'd hoped (numbers are fine though), so of course, I'm reading up on a bunch of stuff. Side note: I don't have any allergies, though it seems that I'm not currently able to tolerate corn in any form (gives me an aching gut & constipation). So I'm off corn.

If you are tempted to say, "but I eat these all the time and I'm fine", I'm happy for ya, but I'm looking for some info on the other side.

There's an old study (2003) that said that other grains - and not just oats - were at times cross contaminated. Sometimes up to 200 ppm. In defense of grains, it also says "In most cases the level of contamination was low and probably not harmful". Which is sort of good....except I'm not loving the words "most" and "probably" these days.

read me: Open Original Shared Link

SO....what does one do? Brands like Lundberg seem pretty aware - do they test their rice? I also looked up Ancient Harvest quinoa, and they seem very safe...except I've yet to develop a taste for quinoa.

Do brands that mark their products "gluten free" have to test? I don't think they do... unless they're certified by GFCO or another certification system.

Have you heard of any more studies like this one? Know any good brands?

I'm ready to take my life back...still too weak for a full time job. Do I try grain free? Just go with trusted brands? I'm trying to gain weight, and a lot of that comes from rices or gluten-free flour mixtures (rice/tapioca/potato).

Thanks for your support

I got the stangest phone call from her yesterday. She started out by reminding me that not only do we share the same birthday, the same interests, have had most of the same life experiences, etc, but now we both have the same sickness. She had begun feeling sick with most of the same symptoms, both lost over 50 lbs apiece, and we have both been on a mission to find out why. We both had all the same tests, kept getting told all the tests were normal. I was beginning to think we were both being poisoned (technically I guess we were!) I was diagnosed through Enterolab since my doctors were awful and wouldn't consider gluten after negative blood tests/biopsy (although after showing them my Enterolab results they changed their tune, even made copies of the lab results for my file). My friend found out because she had a positive biopsy. She has an awesome gastroenterologist. Too bad I can't go see him, she drives about four hours to see him.

I was so sad for her diagnosis, but also happy for me since now I don't feel alone in this new journey (I have only known for about a month and have been feeling like a freak of nature). Funny thing is, a couple of weeks ago my hubby was joking with her that he thought she had the same thing I did and we all just laughed. She always jokes that she is really my mother (she is 65 I am 35) so now this is really funny.

You're lucky to have each other! Understood on the happy/sad sentiment.