thleensd

Ok, so I am embarrassed to admit that pre-celiac Dx, when my fridge was opened, I might have some corn tortillas, two left-over dinners from restaurants, some cheese and a couple beverages. I never learned how to buy and use all of what food I need. So, here are my perceived problems, I hope someone can help me with solutions!

-my diet is now 95% non processed foods, so I need a fridge full of perishables

-I need a high calorie diet, say five meals a day.

-I get tired of a meal easily... Leftover full meals are rare and limited to things like casseroles

-I tend to get half way through something (let's say a melon) and then forget I have it or lose interest.

-if I store food in Tupperware, it tastes like plastic. Glass bowls are ok, but the lids absorb odors and tastes quickly. I'm freakishly sensitive to that taste!

-I'm not a big fan of old food. I don't do well with the "taste it to see if it's good/just cut the mold off" type of thinking.

I'm tired if throwing away food! How can I organize my food/meals?

Oh yeah... I tend toward ADD, and am not inherently skilled in organization (follow-though) so those of you in a similar boat with good coping skills here, please chime in!

Pimp my fridge!

I've used home test kits, but they only test down to a certain level (10 or 20 ppm?). If you are highly sensitive, that won't help, sorry to say.

Eat clean. Fresh veggies, fruits, meat, dairy (if you can handle it), nuts and seeds... give yourself time to get accustomed to reading labels... by shopping the perimeter of the store (fresh foods), there are very few (if any) labels to read! If you avoid as much processed food as possible, the possibility of cross-contamination is very small!

You'll want to find some easy snacks so you'll have something to reach for when you're starving. A couple of mine are almond butter with apples, yogurt, smoothies, and eggs.

Google paleo or caveman diet for recipe ideas. That community has been very helpful for me.

I made the mistake (at least it was for me) early on of buying everything that said "gluten-free" on the package. I didn't really start healing until I got rid of the processed junk. I admit that I am more sensitive than most, but my body sure appreciates the whole foods.

Best!

Congrats! You may already know this but i had to comment that Bob's Red Mill products give several others on this board trouble. We have concluded that it is because we are also sensitive to all oats (even certified gluten-free oats) and since BRM gluten-free products are made in the same facility as gluten-free oats we get sick from all Bob's Red Mill gluten-free products. Might just be somehtign for you to think about. You may just be super sensitive to cc. Keep up the good work of eating clean and healthy though! It's great to feel good again isn't it?

Yeah... I saw my GI doc a couple weeks in and the possibility of it being oats was her comment too... though I'm not 100% sure she gets it. I wished she would've suggested it a year ago. =b

Whatever it is, this is working. I just don't know if I'll be able to start introducing things back in to see or if I'm going to be life-long grain free. I of course can live without them, I just wouldn't want to miss out on rice and buckwheat for the rest of my life if I don't have to!

I definitely think I'm one of the super-sensitives, though.

Especially for those who have had a long recovery:

I've been strictly gluten-free for two years and five months. When I went gluten-free I went from mostly bed-ridden to sort of being able to function. For the next two years I got a little better, but still had debilitating fatigue. I had to stop working and have family members care for me. We all have been eating a very healthy diet (gluten-free house), and started to drink more fresh juice and veggie smoothies. Tried a few elimination diets and settled on corn-free as well. I stopped eating *most* processed foods, but still was cooking with Bob's Red Mill flours and a few other products like tinkyada pasta. I still wasn't improving. It was as it there was a ceiling on my getting better. I have been in physical therapy (since my body was pretty wrecked from the whole ordeal), but not able to make process since my fatigue was so persistent. I've looked into MANY of the healing diets so many here speak of, and....

...I found something that seems to be working for me! I have been completely grain-free (and pseudo-grain-free...ie buckwheat, etc) now for 44 days. I also go easy on beans and potatoes, though I still eat those at times. In this time my stamina has already increased dramatically. I've been able to cook, load and unload the car, concentrate to do errands and pay bills, play frisbee and even dance. Not all the time, but more often. I went on a hike yesterday long enough to get sunburned (duh! skin hasn't seen that much sun for a while). I still need to be careful with my activities since my muscles haven't caught up to my energy level and my back and hips are pretty messed up (read: painfully slips out of place) I will be increasing my physical therapy dramatically starting in about two weeks, and am hopeful that my muscles will actually build now! Fingers are crossed, wish me luck!

I just wanted to share my excitement and give some encouragement to those who are still trying to find their personal magic combination of what to eat and what to avoid. I've gotten a lot of inspiration and recipes from the raw diet people and the paleo (caveman) diet people.

=) =) =) =)

I've gone completely grain-free and processed-food free. It's been a month, and I feel slightly better. (2+ years gluten-free, 1 year corn free, tried other eliminations, this is the one that seems to be working).

I'm definitely super sensitive, but sometimes my reactions are subtle. I've heard from many that can't do Bob's Red Mill products (maybe a secondary oat sensitivity or who knows?), so you're the ones I'd like to hear from. I'd really like to make some tapioca flour cheese bread or be able to thicken gravy, but I'm not sure what to use as a trusted brand. Any ideas?

I'm specifically looking for grain-free starches: potato, tapioca, maybe even nut and bean flours.

Thanks!

The latest research I've read says to wait until your gut is healed (I've read one year or two years), then only take oats in small quantities under the supervision of a doctor. Then they may be tolerated in small amounts.

Plenty of people don't have a problem with them... but many do.

I just got back from my GI appointment (year two follow-up), where my doctor agreed that oats can be a problem for some with Celiac (and therefor for some, oat cross-contamination can be an issue).

Try life without them for a while, and see how you feel. If you need a warm cereal breakfast, maybe you can find some that is rice or buckwheat based?

+100 to shopping the perimeter of the store! A lot of gluten-free processed foods aren't that good for you anyway... so, to avoid the crying breakdown in the supermarket while trying to figure out what to buy (been there, done that! ;-) ) Fruits, veggies, meats are a great way to start. Rice and beans, too. Then work in other things as you find them.

Staples for me: San J Gluten Free Tamari (soy) sauce, brown cow yogurt (lots are gluten-free, but a lot of them have junk in them like corn starch - yuck), and quick-grab snacks like Lara Bars.

There's SO much more gluten-free food available now...try to resist the urge to try it all - there are some good posts here about "favorite snacks" etc if you search.

I have a little bag I grab whenever I'm leaving the house. It has nuts and dehydrated fruit and a prana bar in it. If I'll be out for a while, I also add a couple of pieces of fruit and maybe an ice pack plus yogurt.

Welcome.

Putting on a little muscle is a good way to gain weight. I'm similar height/weight, and I find if I do too much cardio I lose weight. If I do some resistance training without over-doing the cardio, I can gain.

This came up when I searched the forum for Cyrex... trying to figure out if their tests are legit. I'm 2 years gluten-free and not better yet. I think my next step is to try grain free.

How did you get the Cyrex test?

Are you feeling better off grains, chocolate, etc?

I'll have to look into ANA... sounds interesting.

I'm worried about grain free, too, as I'm also looking to gain weight. =b

Any one else have experience (positive or negative) with Cyrex tests?

Are you eating "gluten free" breads, crackers, and other grain products or only things like rice and potatoes? Processed foods that could be CC? Are you eating other foods that can cross-react like dairy? I also just recently learned that coffee can cross-react with celiac antibodies from this blog post.

Open Original Shared Link

The first thing I would try if my doctor said refractory would be to drop all processed foods, including the gluten free breads, pastas, and so forth. If you're reading labels it's a problem. The foods you need to eat don't have labels at all. Try switching to a diet of fresh fruits and vegetables, potatoes, rice you sift through for wheat grains, plain nuts, beans you sort and cook yourself, and raw meats you cook yourself. If it comes in a package or has a label, don't eat it. I know how much of a pain it is because I am sick right now and trying to do that myself but it beats drugs!

I would also drop dairy and (gasp) coffee. I don't know anything about the Cyrex labs mentioned in the blog, but perhaps you should look into their cross-reactivity testing before you go onto immunosuppressants.

Does anyone have more info on this? I know about the possible CC in grains, but I'm wondering how legit Cyrex labs and the idea of cross-reactivity is? Does anyone know anything about the research? I'm also aware of Dr. Osborne that advocated grain free (Open Original Shared Link), but I'm not finding more conclusive evidence. At this point I'm willing to try just about anything, but I hate that his site is too sales-pitchy.

If in fact this is true - that some (many?) people with Celiac cross-react to other foods, it needs to be shouted from the rooftops. But I want more info! Anyone??

For the OP, the word refractory is being thrown around by my doctor, too... but I'm not done looking for other answers. There are people in this community that were sick for years, figured out what else they needed to do (often eliminate foods) and got better. So, if this is indeed a possibility, I for one would like to know!

For energy bars, I'm a fan of Prana bars - fruit, nuts, coconut, puffed millet. They're easy to eat. and remind me of power bars a bit. My favorite flavor is coconut acai. I don't like the others as well. Lara bars are pretty good, too and made of fruit and nuts.

If you figure out what you like, you can make your own. Sounds more complicated than it is. Stick you favorite nuts and dried fruits (raisins and dates work the best -dried cranberries are good too) in a food processor, mold into bars in saran wrap and stick them in the fridge. You can add coconut, df chocolate chips, sunflower seeds, etc. You can even make them bite size and put a couple in a baggie if you need something while you're out.

Good luck.

I didn't see this posted anywhere today... but here is a contact to help Celiacs in the Joplin area.

Open Original Shared Link

I had to laugh a little... my tastes have gotten SO sensitive. It's kind of become a joke. If you're eating less salt than you were before (not eating out, less processed foods, etc), you'll definitely be more sensitive to salt.

I loved reading this! I've been to fatigued (etc) to travel but have a 10 day trip I've booked this summer on the other side of the US. The trip will (only? lol) take about 11 hours, then we'll have a car and can stop at a grocery store. Of course, I plan to lay down on the airport floor during the l=) I have very limited sitting tolerance, too (20-30 minutes)...terrible back pain... but heck, if you can do 30 hrs, I can do 11... =) I'm anxious to get back on the other side of the world. Maybe next summer.

Thanks for sharing!

No, no - you have to let someone in the family be well treated

Oh wait.... haha... I guess I should've been more specific. I wish that my cat's vet (who is awesome) was my doctor, too! lol!

My dog's veterinarian spends more time with her than most of the doctors have spent with me.

Yep, JER.

HA! Totally. I wish my doc was my cat's vet!!

Speaking of "safe" and clean...We make our bread and the only place we eat out is in an entirely gluten-free cafe. I got lucky-- there is one about 45 minutes away. Just awesome. The first time I ate there, I started to cry....I knew I would be able to eat and not get sick

Been there, done that! "You mean I can eat *everything* here?" *tear* .... if I had the energy and money I'd totally open up a cafe!

Can I ask what state/country you're in?

JER due to BDA ... being dicked around? We kill me.

I have severe back pain, and you bet it's related. Remember, Celiac (or gluten-intorance) can damage every system in the body (from inflammation or malnutrition...)

See if you can find a heath care worker that will understand and help you through it. I have a very patient physical therapist who has come to understand that since I'm still in a health crisis my body doesn't heal as fast... so everything I do needs to be at a slower pace. I've been in it for a year. A year ago I couldn't sit, and would have days and weeks of spasms. Now I can sit through meals, take 20 minute walks, and bend and stretch some.

Best of luck. I hope you can find some relief. Are there modifications you can make at work so it doesn't get worse?

I feel for you! You said he feels he isn't showing he cares enough? If that is the case, it sounds like he *does* care... he just needs to learn how to show it in a way that *you* appreciate.

It is SO hard on both people, isn't it? Is he willing to see a counselor with you? If not, maybe you can go and learn some things to cope and help communicate. The guy I was with when I was diagnosed couldn't handle it. That sucked, but I'm better of knowing *now* where is priorities were. Since then I found a guy that can handle it. They do exist. =) Hopefully, your guy just need a little help knowing how to support you through this emotional and physically difficult time.

There are a lot of crazy emotions. Hopefully you have someone other than your boyfriend to bounce those off of. I have been off work for some time as well, and there's a lot to cope with. Feel free to vent here. There is plenty of empathy!

Hang in there! It will get better.

I'm trying to think if there is anything I eat that isn't whole food. Sometimes I get boulder canyon plain potato chips. I think that's the main one, every couple of weeks. No pre-made stuff as far as cookies, meals, sauces, sausages. I don't even buy pre-cut produce. I buy bob's red mill gluten-free flours. The manufactured things I eat are: tinkyada pasta (rarely)... oh, and some trader joes gluten-free tortillas. I'm looking to get rid of those... but I really need SOMETHING that's crunchy/salty (I make them into chips). I'm corn-free. Was dairy-free and nightshade-free for a while, but when I added them back in (after a couple months) I didn't feel a difference. Can't handle corn, sorghum or quinoa. I don't eat soy unless it's gluten-free soy sauce.

I do consider myself one of the super-sensitives, though. I feel special?

>>Me, too...that's when they reach for the pad to write antidepressants and anti-anxiety scripts ....like that's the answer.

Right?? Spent 5 nights on anti-anxiety meds. Oh boy, that was wild! The wrong solution for the wrong problem, and I won't be doing that again! (Unless I want to end up in rehab )

Never. That is a dangerous game to play. She needs to do some research. Please help her.

+100000000 to "a little bit of arsenic"

Kneading amount and rise time is different. Here's a little write-up explaining:

Open Original Shared Link

Follow the directions/recipe carefully, though, because some call for a gluten free bread cycle and some don't.

Meanwhile, he's a really easy recipe for little cheese-bread biscuits. No bread maker required.

I use butter instead of oil, and for cheese a mix a parmesan and cheddar.

Open Original Shared Link

I sent her an angry email , saying I was offended, and she responded that she wanted to talk about it on the phone. she asked me to be respectful. lol.

isn't that too much?? she brings gluten along, then does'nt apologize, and she asks me to be respectful.

I agree that she needs an etiquette lesson, but I declined from the conversation. I just don't have the energy, especially since there was no apology, or sense of responsibility from her for her actions.

I mean, how hard is it to type "oops". or "sorry"???

It just makes me wonder "what's next?" if i talk to this doctor.

I don't need the stress, i need to heal. I hope she learns, somehow, but i fear that some ppl might be too smart for their own (and everyone else's) good.

I'll talk to her!!!!

We can certainly sympathize that getting used to the diet is rough. When you have some time, look through some of our stories here and hopefully you will see what your future could've held without the early diagnosis. If I was diagnosed based on my anemia and low weight, I would've saves many years of pain, suffering, and tremendous expense. I, too had no stomach problems, ate wheat all the time for the first 30 years of my life. A little anemia here and there, took iron, ate more. ... Three years later I was being loaded into an ambulance on the side of the road, had to have a caretaker for a very long time, and went into debt for not being able to work for two years.

I know it sucks. It's not fair. But you've just dodged a potentially huge bullet.