thleensd

Hi all,

I haven't been to the forum for a while, so a quick recap: Got really ill (downhill for years, then acutely), misdiagnosed terribly for who knows how long, finally diagnosed February '09. I had a ton of non-GI issues, the longest lasting seems to be fatigue. The brain-fog, neuro, and balance issues have gotten much, much better since first going grain-free, and now I'm on GAPS diet.

It's been 3 years. I still am not well enough to have a steady job or even really take care of myself. I need constant food (eating many more calories than "needed" for my weight), I'm underweight, have to be careful with how much energy I expend - that is for many reasons. 1-My weight drops if I do too much (I eat as often as I can!). 2-I fatigue easily. Not as bad as before, but still pretty bad. I'm sure my grandmother has more stamina than I, and she's 92 (of course, she rocks, but that's another story!). 3-If I over-exert myself, it's a multi-day recovery.

I think I eat very well (lots of organics, ALL home-prepared foods), and take care of myself physically/mentally as well as I can.

At this point, I just don't know if there is anything else proactive I can do, or if I just have to keep doing what I'm doing!

Blood work is all good, with the exception of iron that I have a hard time keeping up to a reasonable level. I have kind of heavy periods, but am unable to take any sort of birth control/hormones to regulate it. I am super sensitive to EVERYTHING. I haven't even taken as much as an advil in six months (they rip up my stomach and make me sleepy).

My doctors don't know what else to test...and frankly, I'm in a place where I'm going to need to apply for insurance soon, so I don't want to get "pre-existing condition" tagged.

Mostly I'm ranting and venting, but maybe I can come up with some questions that you experienced, helpful people can answer.

-Does a Celiac Dx create problems for getting health insurance?

-What else can I ask my doc to test for? They've tested thyroid, and a bunch of other "standard" blood work. In my initial diagnostic journey, they tested liver, heart, brain CT scan, MRIs, x-rays, pancreas, ...pretty much haven't found anything other than Celiac that is "clinically" wrong....although there were some indicators they missed along the way.

-I'm learning to live a slower life, but I'm going kind of stir-crazy. Trying to start a home-based business I can do part time when I'm able...but I don't know how hard to push myself. It's not like I can exercise and just push through it and be better. I try to walk regularly (about 20 minutes average...some days only 5-6, others I can go for close to an hour). I don't have money to do anything...just scraping by as it is...so, I guess I don't know what to do with my time! I find that when I'm physically tired (a majority of the time), I don't have mental energy either, so reading, writing, etc aren't effective/fun/productive. So, I guess my question here is, for those of you who have dealt with extreme fatigue, how do you structure your time so you don't feel like a total couch potato? I tend to start projects when I have energy, but then get fatigued for many days and either lose interest or momentum.

Would love to hear your thoughts!

What kinds of foods are you eating? Just because it is gluten-free doesn't mean it's best for you.

I didn't turn the corner to feeling better until I started eating only unprocessed foods, then went grain-free/paleo. Now I'm on the GAPS diet which is quite similar to paleo.

As you'll see reading this forum, there are many people with secondary intolerances as well. Maybe start a food journal to track how you're feeling when you eat certain foods (although this is tough, because there are delayed reactions).

Good luck!

That is great news. Celebrate every victory, no matter the size!

Those of you that had to deal with the annual figuring out how you're going to handle food for Christmas/Hannukah/Solstice/etc, how did it go this year?

My family is awesome. They were very careful with the food this year. Wasn't a gourmet masterpiece, but it was certainly adequate to celebrate. At the actual meal, the subject of what I can/can't eat was only brought up once, but then quickly dropped.

I did have one break down in the afternoon for a couple hours that was either from not eating enough/soon enough OR possibly a little CC off of a gluteny kid. Not sure about that one.

How 'bout you??

You certainly have a right to feel bad about this! People often don't think of how much their words can hurt - even when they are the ones that are closest to us.

Please have a talk with your parents (not at mealtime when everyone is hungry or irritable) at a time when your dad seems in a mood to receive what you have to say. Explain very matter of factly why your feelings were hurt when he said what he did. Explain that you know it is hard for them, it's hard for you too. Maybe he need to hear a little bit more about Celiac disease or spend some time on the "friends and family" sections of this website.

Also, since I imagine you'll be on your own in not too long, take the opportunity to learn to cook more things that YOU like. Then, even if dad is being selfish, you can have some great food, and when you get out on your own, you'll know what to do.

Best.

I definitely need to go thermos shopping. I have one that stays hot quite a while, but it's not really big enough. Or maybe I just need a couple more small ones.

I did just buy an assortment of canning jars... a gallon of soup in the fridge so I won't have to do much the next couple of days =)

I couldn't make it through stage one of the intro without nearly passing out, so I'm on intro-3ish while we get better at making soups, etc. I'm not sure I can do without the eggs, but I seem to be tolerating them well. Also, the ferments aren't done (got the yogurt thing down, I think!), so hopefully when those kick in things will get rolling a bit more.

I think the squash and cooked carrots I started on might have a bit too much sugar, though. I think I'm fighting candida, so I'm reading up to see what I should do. I'm underweight, so I can't afford to skim on calories. I'm one week in, though, I've been able to maintain weight (except those first couple of days, that was rough).

This is definitely the right time of year to do the intro diet! It's great drinking warm broth all the time. Not sure I'd want to do that in the summer!

Thanks for the extra info! I'm going to try some regular (tested for heavy metals!) and if I do ok with it, I'll brave the fermented. FUN!

Pretty girl! Dogs (and cats!) are not designed to eat grains! Good for you for getting it out of her diet! =)

(makes me miss my furry family while I'm out of town for a few days!)

So, I'm coming up on three years since diagnosis. Not going to lie, it's been a struggle. Not the not eating gluten part - I'm pretty used to that - but my health. Just can't seem to get healthy. SO fatigued. However, since I've been eating cleaner and taking vitamin D I haven't had even a cold in two years (yes, knocking on wood).

I'm trying to get better! First I went gluten-free, then corn-free, then I added in more natural foods, then I got rid of *most* processed foods, then ALL grains, then ALL processed foods... whittled it down (tried dairy-free, soy-free, nightshade-free), and was getting *slightly* better with each step. But it's just not working. So, after hearing a bunch of you talk about the GAPS diet, I decided to dive in. I almost just went for it from the food lists without reading the book. I'm SO glad I didn't.

This book is great. Seriously... I'm gonna go all evangelical about it. I'll try to tone that down though. I mean, I'm just starting the diet, so I can't be a success story yet. But there is great information in it. That info alone is worth the price of the book.

I've been reading about nutrition and celiac for three years (had to start in little bits since the brain fog was mighty at the beginning). So, there is a lot I already knew about the gut, but this book really ties it together. I had ear infections, strep from time to time - normal kid stuff there, but plenty of anti-biotics. Also I had long term anti-biotic use as a kid as a PREVENTATIVE for UTIs. But I was healthy (um, other than that?)! (But the Dr. SAID there wouldn't be any long term effects!) As an adult, a bout with chronic ideopathic urticaria and angioedema (hives/swelling). More warning bells, too much histamine can be produced by bad gut bacteria! And then I took prednisone! Steroids mess up your gut, too. Hmph.

So, how much disease can be avoided if our gut flora is healthy? A LOT.

This book isn't written specifically for Celiacs. We get a few mentions here and there, but that's ok. If you read this, you'll see yourself in it.

Anyway, I'm excited to be starting this new way of eating. It's not THAT different from the last version of my eating habits, but the differences are important (fermented and cultured foods, etc). I'm a little scared about the whole fermenting thing...but I'm taking a deep breath and going for it. Homemade yogurt turned out on the first try (who knew it was that easy?). Next stop: sauerkraut.

I wish there were an area just for GAPS and/or SCD here. There's a post about SCD that has a gazillion entries on it (it's close to that, I'm sure), but that's really hard to wade though.

Anyway, I'd put this on the must read list, even if it's just the first few chapters. I found myself saying, "I wish I could send this page/paragraph to my allergist/primary care doc/GI doc/sister/friend...) When I get a few more bucks I'll buy a copy just to loan out.

Happy end of 2011! "Let food be they medicine and medicine be thy food!"

I totally feel your pain! My last job I had super brain fog during the interview. I was pretty surprised I got it anyway

Best of luck to you.

I do feel like my brain fog is worst certain times of the day or if I haven't eaten recently. I try to book important things during the best brain times. It's not always that predictable, but I find certain foods are helpful: high proteins and good fats. Sugars make me a little um...unpredictable. =)

LOL.... I know what you mean. People in general don't know what to say about a lot of touchy topics: illnesses, weight loss, break ups... I try to laugh it off. I'm not always successful but I try. ;-)

Today at a holiday concert there were free cookies. I'm learning to be happy for other people ( ) and so as I walked past an aquaintance eating cookies at the table (that smelled #$%^&* good, darnit!) I said, "mmm, cookies!" She said, "yeah! Oh, and you should try the Roca! ..ur, uh um... wait, you can't have any, can...voice trails off...SORRY!"

I just laughed and waved her off. I don't keep track of what people do and don't eat, so it's just funny. My celiac disease made me very ill, so it was kind of high profile.

I'm glad they care. I wish it wasn't awkward. Oh well.

MMM.....traditional barrel fermentation must smell AMAZING!

Thanks for the links.

Ok... Here goes nothin'

Still trying to recover after almost 3 yrs carefully gluten free. I've tried a whole bunch of things with limited success... But am definitely better than I was. Long story short, I'm getting ready to do the GAPS diet. It's not that far from how I'm eating, but I need to add in the "fun" stuff like cod liver oil. Yay!

If you take cod liver oil, what brand? Capsules or straight up? Fermented or not? Should I worry about the vitamin E Carlson brand adds? Have any of you had good or bad experiences with cod liver oil?

I'm ready to hear what you know. Bring it on!

Last week I took a plane trip-5 nights. Rented a car on arrival... we somehow managed one suitcase each (two adults) and brought a whole mobile kitchen (hot plate, frying pan rice cooker, utensils, herbs and spices-don't tell hotel management!). It takes some planning ahead and a some flexibility, but we ate every meal in the hotel room (or packed lunches). I couldn't afford a restaurant glutening for this important week, so we ate in style in the room. A "fun" surprise, the hotel was out of mini-fridges, so we just got a couple styrofoam coolers (changed ice frequently!)

One of my friends with food issues actually checked a small cooler WITH FOOD in it that went with the luggage. At least the stuff she knew she couldn't get at a normal store.

WIth a little planning ahead (or a lot until you really figure it out!) it can be done =)

This:

"except for rice milk and ground rice/millet porridge"

sounds like it could be a problem. Maybe make your own milk from cashews? (Blend with water, strain). Rice milk has a lot of ingredients.

I know there are a lot of possibilities, so an elimination diet sounds smart. I personally had to go grain-free. That's just what my body is asking for.

One of my friends just started an elimination diet under the supervision of a naturopath. She is eating lamb and veggies. That's pretty much it. Then will add in one food at a time. Lamb is supposed to be a fairly hypo-allergenic meat.

When I was having a lot of trouble with who-knows-what I found I could only tolerate cooked veggies. I know that's not an ideal thing to do for life, but it was the only way my body was breaking down the nutrients.

I know it's hard, but try to get rid of the rest of the processed food. That would include the chocolate, cereals, rice milk, etc. Don't forget to drink plenty of water if you have D! Good luck!

Are you ok with nuts? When I travel, nut butter is ALWAYS on my list. I usually just put some almond butter in a little plastic tub with a lid, but you could also go with Justin's nut butters - they're in a little single-serving pouch that can fit in a pocket easily. Whole Foods should have those. Another thing that is good for an instant blood sugar spike is dried fruit - mix it with nuts and/or seeds and you have some decent protein, too. That can also go in a pocket or purse.

I don't know how Legoland is for allowing other foods in, but there are some great ideas here somewhere about sneaking food into places that don't allow it. Any fun medical product box can be used to house food in a purse or backback. I've never seen a security guard ask to open up a box of feminine hygiene products or preparation H Perfect size for a Lara bar or nut butter packets, I'm sure. You might just call ahead and ask their policy to avoid that whole sneaking it in part.

Since you're driving, you might consider bringing a pan of your own for the hotel. Never know what you're going to get - a scratched up pan with gluten hiding in the rivets is no fun! I always get extra hungry on long road trips - so making sure I have lots to snack on in the car keeps me sane. I'm a fan of kettle chips for that.

How about:

Rice crackers

Cheese sticks

Nut butter

Home-made trail mix with nuts, seeds, raisins, chocolate

Dried Fruit

Celery/Carrot sticks

Apples, bananas, oranges

Yogurt (keep in fridge, eat within the first few hours of the day - some people would even eat it warm after sitting out, but that's not my thing)

gluten-free bars (Lara, Prana, Boomi...? All at whole foods)

When I cook in hotel rooms it's usually eggs for breakfast. Fast and easy. Add some cheese for more substance. If you eat gluten-free bread, you could even do french toast if you were feeling fancy =) Eat it with jam so you don't have to cart syrup, then use the jam later for sandwiches or yogurt mix-in!

I did NOT have good luck at Sea World. ....although I'm interested to know what bakery you're talking about.

I always bring food with me... even if it has to be smuggled =) But, I also got a doctor's note which I carry when going to airports or other places where they might not let me bring food. I can almost always bring it in by telling them I have a medical diet... Actually can't think of a time/place I've been turned away (other than a jerk at the airport that eventually let me bring the stuff with me anyway)

Could be any of these, really:

Guar Gum

Xantham gum

Sodium carboxymethyl cellulose

Distilled monoglycerides

Polysorbate 60

sodium metabisulphite

I can't do the gums, personally, and I try to avoid as many additives as possible. Only real way to know (if you want to chance it) is try coconut by itself.

Some people that react to trace amounts of corn have trouble with xanthan gum.

BTW, celery makes lots of people's mouths numb =) Open Original Shared Link

It's a struggle for me to keep it on, but I've been successful - coconut, coconut milk, nuts, nut butters, avocado, lots of smoothies. I eat often. Even though I'm a fan of eating plenty of raw foods, I couldn't break them down for a good year, so lots of soups and stews worked well. Anything in a blender, also! I had to eat about 2x the recommended calories for my size/weight, but now I'm back to a fairly normal calorie count and maintaining weight. For a while, I was taking protein powder, which some people recommend, too.

If you have candida, yes, check out the diet... and stay away from sugars and white rice.

I have to go against the "boost" recommendation, here are the first few ingredients: Water, sugar, corn syrup solids, milk protein concentrate, vegetable oil (canola, high oleic sunflower, corn oils)... The LAST thing you need with candida is to chug down a bunch of sugar and corn syrup.

Add healthy oils to your diet, and keep at it. There may be some other sensitivity preventing you from gaining.

Welcome. This is a great forum and you'l learn a lot here.

Something to consider - if your test comes back negative (or "equivocal" as mine did), they might want to do an endoscopy/biopsy, which is the "gold standard" diagnosis. You need to be eating gluten for that test to be valid, and once you stop, it's really difficult to go back to it (often the body will have a more severe reaction). That being said, if you feel amazing and are willing to go strictly gluten-free without that biopsy, that's a big decision.

As far as food goes, you'll hear from other people here that the easiest thing to do (especially while you're still reading labels) is shop the perimeter of the store. Fresh fruits and veggies, plain meat and dairy can make an excellent meal. Instead of bottled marinade, add some onion, garlic, tomato and lemon. Start with simple foods.

If you are going to buy packaged food, stay away from anything with more than a few ingredients. You can buy beans for example that contain beans, salt and water.... that's a pretty safe bet.

As you get more comfortable reading labels, then you can decide if you really want to put all that crap you can't understand in your body! =)

Good luck!

+1 to getting a note from the pediatrician! Some schools are notoriously terrible about accommodations, food, tests, etc. I hope the posters here can understand that just because their school was accommodating doesn't mean they all will be. I had some awful professors in college. Once you have a doctors note, disability laws should kick in. A note from an attorney may do the trick. Push to get off the meal plan.

As someone who has always been thin, then lost a bunch of weight before diagnosis, I understand how hard it is to get people to take you seriously. If I had a dollar for every time someone thought (or asked me or asked someone else if) I had an eating disorder I'd be able to buy a meal plan then some! It sucks to be judged about it all the time. (Disclaimer... of course you'll want to be certain it isn't an eating disorder, but this is assuming it's not) I really made me second guess myself with THAT MANY people asking.... she doesn't need that additional stress.

That being said, encourage her to thank people for their concern about her weight rather than just deny a disorder. "Oh, thanks for your concern. I don't have an eating disorder, but I *do* have.... and I routinely see a doctor to make sure everything is fine." They'll take her more seriously. Sometimes I throw some humor in for good measure ("I'm trying to gain weight...sadly, I can't accept donations"). Since she is athletic, she really needs to be making sure that she's consuming enough calories and nutrients. Things that have worked for me:

Avocados (they're actually quite portable... cut it in the cafeteria and add it to anything - it can make a salad worth something)

Nut butters (almond especially - the good natural stuff)

Nuts and seeds

Cheese, yogurt (can she do dairy?)

Good snack bars like Lara Bars

A blender for smoothies - this is huge. Even if they aren't allowed, I bet you could work it out (shh!). Even a little bullet blender would work. Blend fruit, yogurt, nut butter... even avocado. Add juice or milk of choice. Fast, healthy calories! (It's good to throw greens in, too, even though that doesn't add calories, it will add nutrition)

Snack all the time. I always carry a banana or almond crackers or nuts.

She may consider backing off a little on the cardio for a while and lifting weights to put on some muscle bulk. Also she should make sure she's getting plenty of nutrients. If she is still healthy, still having periods, still has plenty of energy. She's probably fine will get to practice standing up for herself in a positive way. Do intervene mama bear style if needed!

UGH! SO frustrated right now. gluten-free 2.5 years. Could hardly lift my hand to my face when I was diagnosed, so where I am is a definite improvement, even though I'm not "healthy". Going grain-free a few months ago has really helped, but I'm not out of the woods yet.

That being said, I'm SO tired so often, and I hate food today. I just wish I could take a little vacation from feeling so crappy and only eating at home (super sensitive, multiple "other" sensitivities).

Last week I had some really good days! What do I do when I have some energy for a few days? Use it! I cooked (well, helped cook...can't really do it all myself yet) some amazing meals, actually saw some friends, and connected thoughts (since my brain fog lifted for hours at a time!), walked, drove my car. I was hungry, and I ate a ton! (Awesome as I'm trying to gain weight).

Today, though, all of the extra exertion has caught up. I can't think straight, I'm tired, I'm starving, and NO FOOD sounds good.... not that I have the energy to put it together. I loved actually doing some things over the last few days, but, true to form, I guess I pushed a little to hard and am really feeling it now.

I'm sure I'll be a better self-cheerleader tomorrow, but I just needed to admit to people who get it that today really sucks.

Come to San Diego. You can get a gluten-free hotdog, gluten-free bun and a gluten-free beer! Of course, I don't eat those either, so yeah, I always carry a giant purse, and sometimes a doctors note...but I usually smile and don't get harassed about it.

Honestly, does it make me feel left out? Yes, a bit. But I try to prepare myself extra yummy things for those times - makes me feel a little better.

Do you have any issues with corn? I just found out the other day that coffee is often polished with cornstarch - wacky crazy stuff.

Wait, what? Ugh, this is not good. Do you have a link or any more info? Would it rinse off?

One of the first replies I received when I first started posting in these forums was

"" we have to be our own best detectives""

I have found this to be ones of the truest statements ever written

^^^^ This. Yes.

Hang in there. It's been 2.5 years for me, and I'm definitely still recovering. The latest puzzle piece for me was to go completely grain-free. It has helped tremendously. *Almost* grain-free and *almost* processed foods free wasn't helping. Now I'm starting to have longer and longer moments of clarity and energy. It started with 5 or 10 minutes, now I've had hours in a row, and I'm getting better. Finally.

Keep trying adjustments. Keep searching for improvements. You're not alone.